A Different Kind of Perfect

Oct 25th, 2011: Holland Revisited

2011-10-25T19:49:00.000-07:00

Most of us are familiar with the poem "Welcome To Holland" by Emily Perl Kingsley. Being from there, I have been asked about my opinion about this poem. It also recently came up in a discussion during a class I took part in, many shared their thoughts about it and it turns out most have some (different) issues with it. My first intruduction to this poem was when I was 2 weeks from having Annelies. It was mentioned on TV, I do not remember the context. I remember thinking at the time: "Fabulous. My ex-country is being compared with a disability. Fitting." (I have always been self-conscious of being from Holland. It is not that interesting of a place to most Americans. Being from France or Spain would have been so much cooler. My accent would have been waaaay cooler, too. The Dutch accent, like the language, sounds harsh. Not sexy at all!) Also, when I answered the question "Where are you from?" the responses varied from: "Oh, Holland, ...

-is that in Amsterdam?
-do they speak Danish there? Or German?
-did you live in a windmill?
-does everyone wear wooden shoes there??
-I just ADORE scandinavian countries!
-I have been to Sweden...(Denmark...Germany...)
-I have an aunt from there, do you know her? Her name is van den something...
-is that near the Netherlands (I find this a valid question actually. It is confusing! the Netherlands is the appropriate geographical name for the country, but it is often referred to as Holland by its people, those abroad, and rabid soccer fans. Holland is the name of 2 of its provinces (North - and South Holland). "Hol" literally means "Hallow", a lot if the country is below sea level. Oh, that reminds me of another one:
-are there a lot of dykes in Holland? (the big shiteating grin on that person's face made me realize he was NOT talking about the fantastic reclamation technologies that do exist over there)
-Oh, Holland...Yeah, I have had a Danish before...heh heh... (this from a drunk dude at a bar).
(Now, American friends, before you think I am making fun of you, there are sooo many funny things the Dutch say about the U.S.!!)

But a few times, I received something that went like this: "I went on a cruise/tour vacation to Europe, and was soooo looking forward to France and Italy, but HOLLAND TURNED OUT TO BE MY FAVORITE! I had NOT expected that! I want to go back just to Holland and see more of it!"

And it is that reaction I have to think about when I read the poem. I wonder if E.P.K. had been to Europe, or at least had a good idea of what people's perception was about Holland. So that part, I choose to see that way, simply because I, like many parents I know would not have things any other way! For us, Holland turned out to be an unexpected but perfectly pleasant surprise! One we like better than whatever our fantasies of Italy were. One we want to share with the world and say: It is ALL GOOD, we are in a good place!

E.P.K does talk about the pain that never goes away. For me, it is not pain. It is realization and awareness, and neither of those are bad things I am actually happy to have gained! The only painful thing to me is when I try to think about "B.A." (Before Annelies), if I offended anyone with my naivete! (So, since I have a captive audience of about one on this blog -heh heh-, I would like to take a moment and shout out that any dumb comments I may have made back then came from a place of ignorance, not unacceptance.) That makes me cringe if I dwell on it too long. But I don't, and I try to never forget this so that I can appoach people with some kind of grace, even if insensitive, cringeworthy comments are made.

And all those people who are bragging about Italy (or, their 'typical' kids), well, they are just proud parents like I am! Because they are proud of their kids does not mean they want to rub something in (there are some exceptions, unfortunately, that I have heard of but not yet experienced.)

So I guess I am back...Funny how life goes, isn't it?

Oct 23rd: Yuki

2011-10-24T16:57:00.000-07:00

The greatness of a nation and its moral progress can be judged by the way its animals are treated.

~Mohandas Gandhi

You came into our lives the way you left: surprisingly and dramatically. It was a Wednesday afternoon in the Spring of 1997 and I pulled into my driveway wanting to hear the song that was on the radio (it was “Your Woman” by White Town) and was slightly irritated when a very excited Leif came running up to my car. I rolled down the window and he told me that he had ‘found something interesting (don’t remember his exact words). I turned off the car and followed Leif inside.

Turn back time to the previous Sunday. We found a dead white cat in the office* driveway, it puzzled us and made us sad for the owner, but we did not really think about it much further. It did not look like it had suffered trauma, and we could tell it was a female. We were not super surprised, because one of the neighbors had a whole bunch of cats (more than 15) that frequented our yards. We were a little disturbed by someone who would have that many cats without managing their procreative activities, but we never had anything about the cats because we were ‘Cat people’.
A box was thrust in my face with little white creatures that looked like rats. My Mom and Leif explained that Leif had heard a bird-like yelping sound in the garage, so birds was what he expected to find. He found you and your 3 siblings; approx. 7 day old kittens who had lost their mother at about 3 days old (we now understood that the dead cat was in the driveway was your mom). The Veterinarian explained that you and your sibs survived because your mother was able to give you colostrum those first few days, which goes a long way to ensuring survival of a young one. You all were super thirsty. 2 of you had not opened your eyes yet (because you all looked like each other, and you certainly did NOT look like cats, we don’t remember who was who from the beginning). Leif and my Mom took care of you all, feeding you with eye droppers. The 4 of you thrived from the beginning. Even though Aaron and I already had 2 cats (Rusty and Spikkel), it was not too hard to convince him that we had to have one of you.
The kitten-box was also duly transported to and from the office on days where both mom and Leif were there. In about a week or 2, you started looking like actual kittens, and you ventured outside of the box.
Even though you had four legs, a tail and whiskers, something about you never actually believed that you were a cat. This had to do with the fact that you were fed by humans from the beginning of your life. You never saw your mother, by the time your eyes were open the only ones you ever saw feeding you were us humans (we spend a LOT of time at my Mom’s house in Granite Bay that spring.) Once you came to live with us full-time, you quickly established yourself at the top of the family hierarchy within the Fisher household. As the kids grew, you came to accept them a little more. Over the past few months, Marco became a little more careful in his approach towards you and you allowed him to pet you as long as he did not do anything ‘wild’.
You gave us an enormous scare in the fall of ’99. I guess you came a little too close to the dogs next door and one of them bit you. You did not look like there was anything wrong, there was no blood. But you were in shock, breathing really hard. We took you to the emergency vet clinic, where they put you in an oxygen chamber and you were able to breathe normally again. You had some internal trauma and spent 2 days in the hospital but you recovered pretty quickly. Because your outside skin layer was separated from the inside layer, some air caught in it and until that dissolved it sounded and felt like rice crispies when we petted you on that side. So for a while your nickname was “Rice Crispy Kitty”, interspersed with “Our Thousand Dollar Kitty”- the price tag to get you mended back to health from that little incident.
This thing about you where you thought you were ‘people’ was evident in your reaction when we brought home several other creatures to live with us. First there was Sophie, who came to live with us after Spikkel passed away. Then Marco and Annelies joined our family. Oh, the looks of disdain you gave us (and them) were absolutely priceless. While we laughed at these instances, the special bond you had with Aaron made sure you never ever lacked for warmth and love. You and I had our special times; when Aaron was not around, after the kids were in bed you came and graced me with your presence, cuddling on my lap. When Aaron was home, though, you never hung out with me. Initially I found this confusing, weird and a little irritating. But I learned and came to accept that animals choose their hierarchy with people, and as much as you thought of yourself as the top (boss) of our little household, Aaron was your number 2 person and once I understood the dynamics I never begrudged that relationship.
You knew when you did something ‘wrong’, usually when you tried to sneak out at moments when we wanted you to stay in. You had this hilarious meow-meow-meow thing you did when we ‘yelled’ at you. Because of this, we also called you “Our Back talking Kitty”.
As you got older, you became more cross eyed, something that happens to Siamese cats (that whole ‘I am People” thing is just slightly compounded by that little part of you that was also Siamese). This made for funny moment when you would try to jump on something, miss, and look around you as if to say: “Did anyone see that? And if there was someone, your look would be one of “I SO TOTALLY MEANT to do that.” Aaron and I would look at each other and laugh, but never in your face because we valued your dignity. One of us would pick you up and pet you to help make you feel OK about things.
Despite the fact that you were aging, you were always healthy and happy. You took care of yourself, and to help you maintain your beautiful grooming we sent you in for an annual trim every spring. We lovingly called this your “Attitude Adjustment”. Yes, you did have an attitude, again because it the whole “I-am-people-even-though-I-am-a-mutt-who-is-partly-Siamese” thing.
Aaron mentioned just last week that he felt you seemed to be slowing down just a week ago. It became evident you seemed to be sleeping more, usually in a sunny spot on the landing of the stairs. My comment was that you were probably more tired because Max (the latest addition to our family) was giving you a run for your money. You gave us our final laugh last Thursday morning. I got up to go to work and Aaron was still sleeping. You and I played the bedroom door game every morning; because you HAD to come see Aaron (You probably heard me get up and went to wait at the door so you could go in. Yes, I had a strict no-cats-in-the-bedroom rule which was of course broken the moment I left the bedroom. I opened the door and you swooped by my legs like a little lightning bolt. I muttered: “Geez, for an old broad she still moves very freaking fast.” Aaron dissolved in laughter (I thought he was asleep).
Aaron found you on Sunday morning. Your hind legs were paralyzed. We took you to the emergency vet, who diagnosed you within minutes; you had a stroke due to a blood clot, this caused your paralysis. Your tissue was already starting to die. There was no reversal for this condition, and we could not bear to have you finish out your days with a paralyzed hind-end. As we were sitting in the living room, Aaron, Marco, you and I (it was 6 am, Annelies was still asleep), Aaron and I exchanged a glance that said that we knew you would be leaving us. He explained to Marco that there was a possibility you might not be able to be 'fixed'. Marco took it in, he seemed to understand in his way. He gave you a kiss on your nose good-bye before you left. We knew what we had to do and it was so, so difficult. I brought the kids over to the grand parents and came to the vet’s office. When you saw me, you showed happiness to see me and you purred briefly. Thank you for that. We spent a few more moments with you before you took your final journey over the rainbow bridge to join Rusty and Spikkel. You were the final of the “Original Fisher First Three” kitties. You are now with your friends. You bought 14 ½ years at the beginning of your life in the most miraculous way and we are so, so grateful we were chosen to spend this time with you. You will be in our hearts always.

*Back then Leif ran his business out of a home on King Road in Loomis. For investment purposes, he and my Mom bought the house next door when it came up for short sale. The neighborhood was not that great back then, and houses were “gasp” well under $100K at the time. We rented (and eventually bought) that house from them.

Sept 17th, 2011: Two Worlds

2011-09-16T12:24:00.000-07:00

When I was 15, my parents divorced and subsequently my mom took my brother and I to the US to give her next marriage a shot. Moving at 15, after a divorce (which was difficult, I was the only offspring to come out of that union so I experienced this differently from my older brother) is not an easy thing. Moving to another country, well, fuhgetaboutit! I resisted becoming part of the world I was physically in, and choose to write to my friends back home instead. I spent hours and hours writing, We are talking 80's. Al Gore had yet to invent the internet; let alone Facebook, blogs, etc. You still had to put little "Airmail" stickers on your letters because if you didn't they would end up on a BOAT and take up to a MONTH to get there!) My wonderful friends rose to the challenge. Not a day went by where I did not receive at least 1 letter, some days as many as 5! Just between my BFF and my boyfriend I received 3 letters a week! We spent the first year in New Jersey because my mom's new husband had some harebrained plan for a house he had just built. Rather than selling it immediately he felt the need to hang on to it and sell it 9 months down the road. The plan after that was to move to California. The needs of a 15 year old, and how difficult it would be to get used to one place and then have to move across the country to another place, were obviously not considered in any of these plans. The marriage (combine an independent, stubborn Dutch woman and a fairly traditional Arab man...and the LAST thing you can count on is a happy union) was a bust from the beginning, so rather than having energy to be there for me, my mom was in relationship-survival mode from the beginning. So I took matters in my own hands (I am nothing if not resourceful!!!) and choose to NOT get attached to my environment in New Jersey. I wanted to save my energy for California. So while I lived in NJ, my heart was in Holland. When I went home for the summer after those first 10 months in the US, I was completely 'in the loop' as to what my friends were doing and I picked life back up without missing a beat.
Now that I have kids, I realize there are a lot of similarities to having kids with special needs and living in separate worlds. Having Annelies, we were thrown in the world of Down syndrome. So many preconceived notions I had about that one, oh boy! Because I was of *snicker* 'advanced age' when I gave birth to my kids, of course I had given Ds more than a few thoughts. And I had all these lovely preconceived notions about "those" kids and their parents, and the one thing I knew for sure was that I DID NOT WANT TO BE IN THAT WORLD!!! (For the most part, I felt pity towards families with Ds). So the first few weeks of Annelies's life, I decided to do whatever I could for Annelies to have as 'normal' a life as possible. Sure, she had Ds, but dammit, she was going to be the BEST, SMARTEST, CUTEST kid with Ds out there. In those early days I felt vindicated whenever someone told me: "Oh, she doesn't look like she has Ds." Any pictures I published or sent of her were ones where she looked as 'typical' as possible. I avoided contact with other families (not that hard at that time, it was a pre-Sisterhood era.)
In July of Annelies's first year, the annual Ds convention was held in Sacramento. I wanted to attend because I was beginning to realize that Annelies's interests HAD to come before mine in this matter. As her parents, it was (and continues to be) our duty to find out what we could do, and tap into the resources out there to help Annelies with her development and live the fullest, healthiest life she can. The older Annelies got, the more obvious her Ds became in delays and just in the way she moved and looked. But to my surprise, the older she became, the LESS the Ds seemed to matter!! I was (and still am) amazed at the things she DOES know and do, and she continually blows out of the water the preconceived notions I had about Ds. Towards the end of that first year, I found myself looking at Annelies and noticing the things she was learning, the personality that became more and more defined, and seeing the Ds less. So I am now amazed at how easy it is to merge the 'world of Ds' with all its fabulous people (yeah, another preconceived notion that was blown out of the water about parents who have kids with Ds...what an amazing group of people!) and experiences with the world we live in that includes typical daycare and friends for both of our kids. Kind of like both worlds have merged. Which brings me back to my move to the US. Initially, I felt like a foreigner here (people asked where my lovely accent was from) which made it difficult for me to 'nest', but when I went back 'home' for a visit, people would ask me when I was leaving again, which made it hard to enjoy my stay over there, settle in and feel at home, even if it was just temporary. After 25 years of being in the US, I feel at home here, and I feel great when I am in Holland, visiting my family. Same way as I feel at home in the "Ds world," and it makes me feel good that Annelies is thriving in *her* world, however she chooses to define that world. All I want is the wisdom to guide her in the best possible way.

03/13/11 13.1 (Lots of 1's and 3's in this title!)

2011-03-16T17:40:00.000-07:00

I have been asked to share a little bit about my half marathon experience, so I will. I am generally not too eager to write about myself, but this was an experience that I will share so that maybe others may be encouraged to do something out of their comfort zone as well. Here is the main reason I am sharing: When people caught wind of this 'endeavor' 90% would say; "Oh my gosh, I could never do that".   Well, yes, you can. As long as you want to give it a shot, anyone can do this.
Most of you have know me in person know I am NOT athletic (at least, I do not LOOK athletic even at this point). I have had periods of working out during my life time, have even had periods of being in reasonable-to-good shape, but that was during my 20's.   When I WAS working out, I always thought about running (jogging, really). I started running last summer, tentatively, a couple of miles here and there. My relationship with my body has not been a good one throughout my life, I have always felt overweight, even when I was not, but have been too heavy since my mid-20's.
Anyway, one of the Ds mama's threw out an idea on our forum: Let's get rid of some Holiday fat by training for the Shamrockin' Half Marathon. This was in January, about 12 weeks from the event. I looked up the event, and came across a Fleet Feet training class that was going to meet 2 times a week. I thought: If I can make it to 70% of the training sessions, I am going to sigh up. I checked my schedule, and was able to make to all but 2 sessions. It was "Meant To Be". I signed up for the training and the event, and zestfully threw myself into it. I started out running 25 minutes, built up to 30, then 35, 40. 2 weeks later, I was ready to start the Fleet Feet training. The thought of going to this training intimidated me to no end. For sure, people were going to look at me and think: "What the heck is she doing here?" Oh how little faith do I have in humanity (and if there really ARE people out there who think that way, well, they are not really worth my time.) I joined the run/walk group, because I was jogging a 15-16 minute mile (I TOLD you I am slow) at the time.
The training was really neat, we built up to a 12 mile long run once a week by adding one to 2 miles each time. The first training session, we ran 50 minutes. The first 3 weeks we did 50, 65 then 80 minutes (the 80 minutes was about 6 1/2 miles). Then we did 7, 8, 10, 12, 8 mile long runs on Saturday. During the week, we did shorter workouts and cross training (I did some swimming).   I found out that training for a long distance event does not take up more time than 'just' working out. It took my mind off working out to lose weight (my sole motivation to work out so far), making a workout actually a fun thing to do ("I am training for something..." rather than "Damn I am fat, I need to work out"). I even got to the point where I would plan on a 3-4 mile run, and end up adding a mile or 2, just becuase I felt like it!
The event itself was wonderful. I am glad I joined a training program, because I had done 12 miles, I knew I could do it. Nevertheless...I was nervous as hell the week before the event. The only times I did not feel nerves doing through my tummy was when I was in the gym (I did 2 long 1.5 workouts on the bike and elliptical machine to get mentally ready to move for a long period of time, while not having too much impact) or when I was sleeping. The night before, I slept about 3 hours, I was absolutely wired! The morning of, I woke up before my 2 alarms went off (it was daylight savings, too).
The run itself was a peaceful experience. I did not go out too fast, I kept at my slow pace and fgelt good throughout. The only time I started to feel ready to get it over with was during mile 10 and 11. After that, I felt good and knew I was close to the finish. I was able to sprint the last .10 in the stadium, and was at the same time really emotional. Could not believe I did it, and for the first time in my life felt proud of something I accomplished physically. I actually felt a slight bit of respect for my body for the first time ever! That is a new feeling for me.
I am going to do another 1/2 on May 1, am ready to get a little faster! I have my workout plan (and eating plan) all ready for this one, I am adding strenghth training and will watch my eating. Now, I want to lose some more weight so that I can actually get faster at this!
I could not have done this without support from some wonderful, inspiring people. One of them, is my friend Jen V. who planted this whole idea in my head in the first place, and who is an inspiration in all aspects of life. Then there is CM, my cubicle mate at work. She is a super-runner, and has patiently listened to my tales of beginner's woe (actually, not much woe at all, it has been good!). She has given me some very valuable advice! The coaching team from Fleet feet was AWESOME and so, so supportive! And then, of course, Aaron who has spent time watching the kiddo's on Saturday's while I did my long runs!   The bottomline for me is that one can DO a lot, when a support system is in place! And if you ask for support, it is usually there!

Feb 6th, 2011: Annelies's World of Opportunity Just Got a Little Bigger

2011-02-06T20:44:00.000-08:00

From the first day Annelies came into our lives, I looked for opportunity for her (once I got past the self-pity part). I read hopeful stories in blogs and on other websites from all over the world about what people with Ds can do and have achieved. Via YouTube, I 'met' a very cool lady in New Zealand who lives on her own and has her drivers licence (when I saw that video I initially thought...wait, you are driving on the wrong side of the road...). I 'met' kids who go to school and have typical friends. On Face book I 'met' these 2 beautiful girls who were hanging out at Starbucks in Germany via a fabulous photographer (Conny Wenk-Google her, her pictures are a true treat) who makes it her life work to photograph kiddos with Ds. I met in true life a beautiful 10 year old who attends public school in Colorado, and a just-21 year old who celebrated his 21st B day in style, in Las Vegas, where his Dad bought him his first shot. I also met 100 beautiful children in Holland, in a book my Dad sent me, taken by a photographer who has nothing really to do with Ds, but was just fascinated by the beauty of 'our kids' and felt teh need to publicize this. These images and real-life meetings gave me such hope for Annelies's future, and eased the 'freaked-out-ness' that I felt about the diagnosis.
What also helped tremendously were the words of our Pediatrician who told us: "Do not let this diagnosis lower your expectations for this baby. She will talk. She will go to school. She will lead a full, productive, independent life..." At Annelies's first physical she did not even want to write "T-21/Ds" on her chart.
So of course there is hope, and there is the question of: What are we going to do to bridge the gap, or as they are called in therapy, 'deficits' (also such a lovely word, but I am not worried that much about words.) How are we going to get this beautiful baby from here to a relatively 'normal' life without being too drastic about it? When I bottle fed Annelies those first months, it occurred to me that the bottle-nipple-holes were packaged and sold by age. 0-3 month nipples had small holes, 3-6 the holes became bigger, etc etc. Because Annelies is a child of 'least resistance', I gave up nursing her after she discovered how easy bottle feeding is when they started pounding those bottles into her at the NICU (They were just doing this because low tone can partially help cause feeding issues with many kiddos who have Ds. And I was still in the self pity phase of the whole thing so I went along with what they thought would be best. I knew nothing about Ds, and was more worried about other possible health issues that were presented to me she might have because of the Ds. I LOVED the nurses at the NICU and will forever be grateful to them, for giving us our start. At any rate, here Annelies was drinking happily from her bottles. I used lowest possible flow nipples because if she was not going to gain strength from sucking on a human nipple, she sure as hell was going to gain as much strength as possible from the fake ones. And I never moved from the low flow. The nipple I threw out just a few months ago was a lowest-possible flow nipple. When I pumped for Annelies, I found I had to set my (hospital grade) pump setting higher and higher. So I wondered about the 'wisdom' of the hierarchy (shall we say) of the fake nipple holes. And I applied my logic (I may not have much, but I DO have logic and common sense, and they DO help get you somewhere sometimes!) and made that decision.
Anyway, about 6 months ago I was told about Sara Rosenfeld-Johnson. If you have a child or loved one with Ds, you have to look at this article:
The Oral-Motor Myths of Down Syndrome

By Sara Rosenfeld-Johnson, M.S., CCC-SLP
Published in ADVANCE Magazine August 4, 1997
You can get to it via this link, scroll down to the bottom.
Annelies had an evaluation today, and it was so helpful. I will not describe all that we talked about, because my head is still spinning. But in a nut shell, we have a set of tools and steps we are going to take that will help Annelies strengthen the areas in her mouth that wll help her eat better and eventually talk as clearly as she is going to be capable of. SRJ gave a lecture last night for parents, and out of all the things she said that were so good, one thing that resonated with me. That was the part about how such a large percentage of communication has to do with visual perception of a person. What do people think about when they see a person with Ds? Slack jaw, tongue hanging out (partially). What do people think with they are presented with a person who looks like that? Right. Go figure. Slam that door (to opportunity-jobs, schools, etc) right shut! SRJ found methods to therapy that can be done at home to decrease this, and send out kids on their way to Oral Motor 'control' (for lack of better words). Annelies and I had a 2 hour meeting with SRJ today. I told her my thoughts on nipples and she told me I am "the perfect mom". LOL. She made me feel good, even though I am so far from being that (seriously, she was just being funny). But she DID tell me that becausee if what I did, Annelies's tongue thrust is so mild, and she has a wonderful 'basis' to work from! As I drove home, I was nearly in tears of hope and happiness. I saw more doors open for my child, and I am so excited for her!

Jan 1, 2010: Marco Has a Girlfriend

2011-01-13T22:28:00.000-08:00

Really never imagined it would go this way. Also did not think it would happen quite so soon but alas, my first born has lost his heart at the tender age of not-quite-4. Here is how it went down: New Years Eve at my Mom's house. Violet, a long time girl-friend of my Mom's, often indulges the kids with presents when she visits and she did not fail this time. Annelies was already in bed when Violet showed up, so Marco got to open his present. Not quite satisfied, he dragged (I say dragged because it was a LARGE box) Annelies's present over to me with a request to 'open Annelies's present, please'. My Mom told me to just go on ahead, Annelies would not really mind if Marco opened her present. He tore the wrapper off the box, carefully handing us each piece. So cute. When the wrapper was finally off, Marco's eyes became round as saucers and he grinned from ear to ear, because he was face to face with...an almost life-size doll. We found out her name is Lisa (The box said "Lovable Lisa") and we sat her down on the couch. Marco stood facing her, and looked at her out of the corners of his eyes from each direction, with a goofy grin on his face. We were all astounded at this very non-autistic bahavior. We told him to hug Lisa, and he did. We told him to kiss Lisa and he couldn't do it quickly enough!
When bed time came, Lisa had to come with. Marco asked for Lisa to sleep in the crib that is in my Mom's guest room, and I would share the big bed with Marco. (I asked him if he wanted her in the bed, he said 'No, Lisa in the crib'). We tucked Marco and Lisa in and told them good night. An hour later, I went to check on Marco. He had gotten up, turned on the light, gotten Lisa from across the room and tucked her in bed next to him, and fallen asleep (there is no way for him to reach the light switch on the wall from the bed, so the light was on). Unbelievable, so very cute!

The next morning, Marco wanted to take Lisa with him from the bedroom to the living room. I announced to my Mom that this was not just a one-night stand, this is the real thing! To this day, Annelies has not been able to get anywhere near this doll, who happily lives in Marco's room. (He does not insist on taking her everywhere, he is happy for her to just be there when he comes home.)

Dec 31, 2010: Looking To The New Year

2010-12-31T13:55:00.000-08:00

I did not make any resolutions because I learned early on that making a resolution for me is the quickest way to stop whatever habit the resolution required FAST. So at the beginning of this month I took some time to reflect back over 2010 and if I had to sum the year up with one word, it would be: chaotic. The biggest contributor to chaos in many homes would probably be kids. So many things need to be organized for kids. For Annelies, I tended to go with the flow of our therapists' schedules, fitting my work around them and not looking for better options (like, scheduling something for when Aaron was around). With most therapists, we did not have a 'standing' appointment, so often at the end of the appointment I would have to work with them to find a good time/day for the next one. Just thinking about this process made be break out in a cold sweat, because it is so hard to book an appointment with an already over committed therapist! It also caused me to decline one hour of warm water therapy per week for Annelies, because I just did not think we could fit it in!
Mondays were tough:
1) Bring Marco to Rancho Cordova for school (1 1/2 hour round trip in rush hour traffic on the way there), 2) Be back home in time for ST with Annelies at 9:00 am
3) Annelies to Monday Morning play/therapy group at 1:30 am
4) Coordinate drop-off/pick up for Annelies
5) Back to Rancho for work
6) Marco up at 4:30, go to class at 6:30.
By the way, I am sharing this not for sympathy reasons. Parents (special needs and/or SAH or not) are Just.Plain.Busy. Being that the kids at toddler age need more supervision and help doing things (potty, dressing, eating, etc) makes it even more so.
So early December when I thought things over, I figured it would be a great idea to set up all Annelies's therapies for set, weekly times. And I proceeded to call each therapist and do just that. Within a few hours of talking on the phone, we now have a steady appointment schedule for Annelies! Also, one of her Physical Therapies (Warm Water) she will mostly be able to attend with her Dad, and I love having him involved with her activities! I also arranged with one f her therapists that she will either come to our house, or my Mom's house, depending on where Annelies is. The appointment time will remain the same, I will just send one email at the beginning of the month telling her where to be.
One other load off will be that Marco will attend preschool and daycare in Loomis. He will go to ST once a week, on either Tuesday or Thursday afternoon, with Aaron. With this therapist, I arranged that Marco and Aaron will attend on the day Aaron does not work (he never works both Tue AND Thu, and I can let her know in the beginning of the month what days they will be there!). As I was arranging this, knowing my desire for regularity and organization in the Fisher household, I did freak out a few times. What if I can't do it? But I kept at it, and voila! Done!
In the physical-organizational-sense, Aaron installed shelves in our little bonus room (we have an 8 X 6 lighted room at the back of the house for storage (or time outs...KIDDING!). Up till now, we just threw things in there, and it had stacks and stacks of boxes and crap from our move (because when you move, you find all kinds of stuff you forgot you had. Stowing it away in a dark corner of the house will actually create the illusion that it is still not there and we don't have to deal with it. Right?!? Anyway, when I looked at that room/closet with the shelves, I asked Aaron: Where is the rest of the stuff? He began laughing and told me: It is all there, just easier accessible and much less messy! This prompted me to clean out our coat closet, which is now Annelies's favorite place to open door and go in and play (there is now room for her to do so, and I don't have to be afraid that something may fall on her due to the way things were packed in there, too.)
Who knows, maybe all this organization will give me enough energy to do AMAZING things next year. Just kidding, I am really just looking forward to a less-chaotic year!

And I wish for you all the same; not-so-much chaos but LOTS of Love, Happiness, Health & Compassion in 2011!!!

Dec 14th, 2010: Something Nice Happened at Work Today

2010-12-14T18:11:00.000-08:00

I never blog about my job or the company I work for, but today I am! I work at a large International Mutual Fund company, called Franklin Templeton, and have been there for 13 years in January (yikes)! Company leaders make it a point to encourage employees to volunteer in their communities and a lot of my colleagues do just that, in many different organizations; be they related to environment, people or animals. I love that aspect of the company. In 2006, a company leader who always made it a point to be involved with different good causes passed away, and an annual award is given out in his name to an employee who demonstrates a high level of involvement with local volunteerism. This is a very prestigious award; the person who wins it is given $10,000 for the organization they volunteer with.
Today, at the company-wide meeting with at least 3000 attending from various locations all over the world, the 2010 recipient was announced. This year’s winner lives and works in Hong Kong, and donates his time to a local organization that works with those who have Cognitive Disabilities. I can not begin to describe how this made me feel. When the award was given out last year, I hardly paid attention because I assumed it would go to a person who supports a cause that was a lot more ‘glamorous’ than one for people who have cognitive disabilities (oh, me of little faith).
Up to not long ago (unfortunately still happening in parts of the world), those with cognitive disabilities were mostly ignored by society. Thinking about those who have a cognitive disability (or having a baby with one) scares the crap out of many people, and it is easiest to push any such thoughts to the back of the mind, and hope it doesn't happen to you (at least, that is how it was for me before Annelies was born. I do not assume all feel the same way I did...). In front of a huge audience of people, a young man who donates his effort and time to a school where people with cognitive disabilities come to learn, play and develop to their fullest potential was put in the spotlight in front of several thousand colleagues across the globe. I am so thankful this large group of people got to see that people like my daughter are absolutely worth the time of day and so much more. The moment I realized what the organization this person volunteered for was all about (they showed a video), tears came and I felt so good at the same time, so validated in a way, on behalf of my daughter, her friends (the ones she does not know she has in Hong Kong and all around the world), and us parents. (Thankfully I was in a huge auditorium, and I am a good silent crier!) I had no idea this kind of thing would evoke such feelings, and I never, ever expected these feelings to happen at work, of all places!

Dec 12th, 2010: Annelies Cracks Me Up...

2010-12-12T18:01:00.000-08:00

...Her room looks like we had a toy drive, thanks to her many friends who visited her birthday party. Yet THIS is what she chooses to play with. (She goes all the way up the stairs, finds the cupboard they are in, opens it and digs them out)... But...she is wearing the pajamas Gracie gave her! And I was able to put one of Susan and Charity's flowers in her hair earlier today!

Nov, 2010; Almost 2 Years!!!

2010-11-16T18:18:00.000-08:00

Annelies turns 2 years old in less than a month! Thinking back it feels like a lifetime has passed in a short time. And then sometimes it feels like her birthdate was yesterday. I don't spend that much time looking back, but I marvel sometimes at how naive I was when Marco was born. Ds was a concern of mine and when I first laid eyes on Marco I said to Aaron: "He is OK, He is OK," meaning: "He does not have Ds". Of course, I did not know the first thing about Ds, except in my mind it was a life-ends-as-we-know-it diagnosis and everyone who had to deal with it were to be pitied. Oh, how little I knew. When Annelies was born, there was not that "She is OK" feeling. Oh no, we knew right away! I do not fully know how I got through Annelies's Birthday but for grace, family members and a couple of very good friends who visited. Rereading that post is interesting, it brings back a lot of memories. I am glad I went through the whole experience as well as I did, it makes me feel good.
The first year of Annelies's life, it almost feels like I went on some kind of publicity tour to let the world know WE WERE ALL RIGHT. I felt the need to do this because the thought that anyone might feel any kind of pity for us made me cringe. I started the blog, took and sent pictures, wrote letters, took and sent more pictures and even took Annelies to Colorado and Holland. I had a great time on these trips, but there definitely was this frantic need to show as many people as possible that we were fine. Better than fine. Interesting, isn't it? That need is much less now, I think for the most part I am aware that people either know/believe we are allright, or they don't and it really should not affect me that much. Most important is for me (us) to live our own lives and focus on ourselves.
One other funny thing I went through in the first few months was when we were told how cute Annelies was, I felt the need/urge to tell people she has Ds. Almost like I was afraid that people might think I was in denial about it, or like I felt that people might retract their comment if they knew, or not have made it. Crazy! I never did mention it to people unless I was asked or they made a comment about it first, but it was always on the tip of my tongue. (Reason I did not say anything was that I wanted Annelies to be admired just like any baby, exactly the way she deserved).
Also during that first year came Marco's diagnosis. Since that diagnosis was the culmination of almost a year of denial, it really rocked our world a lot more than I admitted at the time. I continued to go strong and we got through the Holidays and some really busy times at work (implementation of a major system we had been working towards for < 5 years). In January/February timeframe, I kind of crashed.
I am fortunate to have an AWESOME support system in my family and friends. I met so many wonderful people I would never have met, and am grateful for this every day. My world has expanded. So funny, my feeling about this would have been that parents of kids who have special needs live in a small world, with all their focus on their child. I guess it COULD be like that. But not for us. We enjoy our kids but learned to take time for our selves and each other. Heck, I experiences my first "Girls Night Out" this summer, and would never have if it were not for Annelies (or it may have taken longer).
It hit me the other day that my concerns for my kids are not that much more than those of parents of typical kids. Annelies and Marco are doing so well, have made and continue to make so much progress, that I think they will be just fine. They are kids, like all other kids, their diagnoses such a small part of who they are. I tend to forget about it, I don't live with it every day. Yes, we will still have the IEP's and don't get me wrong; they stress me out. Maybe because they are what draw me back into the reality of the "special needs" that have to be dealt with. Or maybe because I am just enjoying my kids and not counting every word Annelies now knows, how many steps she took today, or how many words are in the sentences Marco speaks and how much he can count. Hopefully, in time, that will become less. At any rate, We are happy with our 2 sweet, happy, astute, adjustable, compassionate, strong, cute kids!

November 14, 2010: Our First Photoshoot With Both Kiddo's

2010-11-14T12:43:00.000-08:00

Here are a few pictures of the kiddo's taken by a friend/colleague of mine who is exploring the "world of photography", trying to see if it is something he would like to pursue. Annelies was recovering from a cold and Marco was about to get one (I was not quite aware of that yet, realized that only in hindsight). So patience for both of them was fairly short. Still, Edwin took a couple of really cute shots that I wanted to share with you all! Enjoy, I will write a little more next week. Have been working on a paper for school and requirements/documentation for work so have not had much extra energy for writing!

Hugs!!
Debbie & Co.

Nov 2, 2010; Halloween!

2010-11-02T20:00:00.000-07:00

This year, Marco got to go Trick or Treating for the very first time. Initially we were wondering if it was even a good idea or if he would catch on to the idea. What were we thinking? Of course he caught on. It took less than 3 times, and he proudly walked up to the doors, knocked or rang the bell and said: "Trick or Treat". I am pretty sure Marco will probably not remember this night, he is only 3 after all. He will see the pictures of course. But I know Aaron will remember forever the first time he went T or T with his kiddo (Mom and Annelies stayed home to answer the door...Can't disappoint the neighborhood kids!!!)

My 2 favorite Firemen!!!

Verrrry tired afterwards!

Our Vacation: Part II

2010-10-23T09:00:00.000-07:00

Marco enjoyed going on small hikes. Can't wait until Annelies hikes with us, it is the best way to see nature!

The following pics were taken from "Going to the Sun" road. They do not do the beauty justice...

We found some horses in the grass near our camp...

Glacier National Park- Southern edge of the park. We were not even IN the park yet, and it was beautiful!

Marco made friends at the camping lodge...

Our little traveller :)

Take this, big ball of twine!!!!

Loved this!

Oct 16th: Monica and David...Saw it, Processing it, Some Thoughts

2010-10-16T09:35:00.001-07:00

Like most parents of kid's who have that extra chromosome, I have been awaiting the release of the film "Monica and David" for about a year now. Trailers I saw until now seemed very hopeful, it was about a couple who have Down syndrome who fell in love at one of their classes (Life skills or something like that), and were married. It follows them for the first year of their marriage. Here are some thoughts. Random, as I am still (like most, I am sure) processing like crazy in my mind...

Monica is about my age, my generation. When she was born, the general advise was for parents to give up their children who had Ds. Her Mom did not, decided to raise her and ended up doing so on her own. Marriage broke up. Same for David's Mom, but I have a feeling David is a little bit younger than Monica. This is positive to me. Here is where these Moms were pioneers for their children. These are the Mom's who started and continued the movement, and I am grateful to them for that. When Monica went to school, I am sure there was NO inclusion to speak of. Imagine what she could have learned if there was? She most certainly did not come across dumb, I actually was amazed at how smart and poised she is. She is just naive (and I do not mean this in a bad way, it was just thst she was not exposed to things!!!)
Monica's Mom said that because Monica did not go to College and does not have a car, they were able to afford a large wedding. I like that they did this, they gave Monica and David a wonderful day in the sun. It was a gorgeous wedding, I hope to be able to provide my kids that one day*, too.
I am NOT going to give up hope for Annelies to go to College. I think where it comes to Down syndrome and other special needs, there is a huge collecive changing-of-the minds that takes place over a long period of time. Where 50-40 years ago parents finally believed (and fought for the belief) that their kids could live at home with them, 30-25 years ago parents started fighting and are making headway to full inclusion in schools. Technically, "Full Inclusion" is now a reality not only in the US but also in other (Western) countries). But it is not the same from one place to the next. We are lucky (or were we smart? I still think back how funny it was that we both wanted to live in Loomis because of its school district at a time we did not even want kids, and thought we would never have any. Funny!!!) to be living in an AWESOME school district.
Monica's and David's Moms addressed a HUGE paradox, and I admire them for it. They both said they feel an absolute need to protect their children from the outside world. It was plainly evident that David would be totally up for working at Publix, the local supermarket. His Mom does not want him to, and he pretty much surrendered to her desire. When the time comes, I hope to be strong enough to allow my kid to do what she feels she needs to do. Both Aaron and I had jobs as young teens, and I would love it if my kids do something similar. We both had the drive to be independent, and I want to instill this need in the kids. Yes, we will ALWAYS be there for them, like my parents are there for me right now! Bot by god, I will do what it takes to give my kids the tools they need to make the most of their lives, 'special need' or not.
There is NO DOUBT there will be bullying. And it will SUCK. And I will want to stand up to the bullies to protect my kids but I won't be able to (without subjecting my kid to more of it). I was bullied when I was younger to. I read statistics that nearly EVERYBODY gets bullied at some point in time. It appears to be a part of life, and I will NOT be able to protect my kids from it. What I can do, as a parent, is help instill a healthy sense of self, a good feeling of confidence that hopefully allows my kids not to take those things said by bullies to heart. That will allow them to value their real friendships. Monica's mom gave a HUGE message for us parents of young ones out there, and I paraphrase: We, the parents of our kids, are the ones who TEND TO HOLD THEM BACK THE MOST because we think we are protecting them. Very profound. (I know kids that did NOT have special needs that were protected by their parents so much to the point there is no way they could buid an independent life. It happens, not only to those in the sn community...) I applaud this lady for being able to step back and take an objective view. She is a link in the chain to progress for our kids, and we are the ones who have to continue building that chain, and breaking down the "world's" expectations.
So yes, I was dissappointed in parts of the movie, but I have to keep in mind the genertional differences. This made me see the positives. We are all here to learn. I like to believe that we all learn from the generations before us, and the generations after us will learn from us. That was what I took away from it...

HUGS!

Debbie

Our Vacation, Part 1

2010-10-15T21:36:00.001-07:00

Here are some pictures from the trip we took in September. This part covers Idaho and Yellowstone. Enjoy!!!

OK! Ready to hit the Open Road!!! There was NO ROOM for anything else in my car. Probably a good thing it broke down when it did, the rental car was pure luxury!Coffee break somewhere (I think it was Battle Mntn) in Nevada.

Little Hiking guy...

Shoshone Falls, Idaho (I am amazed at how beautiful Idaho is!)

Marco was impressed at Shoshone Falls, too.

Little guy hanging out at the campground (before the snow.)

We HAD to go see Old Faithful!

SNOW In September! How awesome! (Not so awesome when you wake up in a tent though...)

Wading elk, we saw so many animals in both parks!

Mama and Papa

Oct 6. 2010: Will You Step Up with Us?

2010-10-06T20:29:00.000-07:00

Dear All,

The day Annelies was born one of the nurses on my floor made a connection between me and a Mom in the room next to me. Kathy’s 3½ year old son, David, has Down syndrome. She and her family had traveled the road we were about to embark on, and was able to tell me (along with many other things) that “IT WAS GOING TO BE ALL RIGHT”. She was there for me when I needed to ask questions as I came to terms with the diagnosis in the weeks after.
One of the Down syndrome Information Alliance’s main objectives is to ensure information is delivered to the right persons at the right time in the right place. DSIA organizes community outreach events which allow families living with Down syndrome to connect with each other. During these events, local siblings of kids with Ds meet each other in smaller groups and provide each other support. Parents meet in smaller groups (based on their children’s ages) and are given information and encouraged to share information about education, therapy, and other important issues. Educational events are organized where key-note speakers come and share pertinent information with parents about development, different therapies and research results.
One of the main objectives (my favorite one) of DSIA is to do what Kathy did for me that day; be there for new parents to answer questions and give support where and when needed. It would be wonderful if every family with a child who has a Ds diagnosis had the opportunity, when ready, to meet one of the parents who has been down this road to ask questions, someone who can be believed without a doubt when they say: “I have been in your shoes.” DSIA is working on implementing a plan that will allow for such connections.
The face of Ds has evolved (matured, in my opinion) over the past 50 or so years. With each generation, parents and teachers discover that Ds is not the main ‘thing’ about a person. Persons who have Ds are more like others than not, and also very different from one another. More and more, people who have Ds are actively involved in society; attending mainstream schools and figuring out what they enjoy doing, pursuing careers and eventually living independent lives, getting married and starting families of their own. DSIA is here to ensure parents and families are given information they so desperately need, hope at a time there seems to be none, examples and inspiration.
“SUDS” (Step Up for Down syndrome) is an annual fundraiser that enables DSIA to gather funds so they can continue services within our community. We would be honored if you would like to join our team at SUDS on October 17th at 10:00 am. We also know that time is limited for many of you, or you are not in our area, so there is the opportunity to donate to Annelies’ fundraising effort for DSIA. There is absolutely no pressure, I am not crazy about asking for money and only do so when the cause is important to me and those around me. I thank you from the bottom of my heart for reading this far if you have, donation or not.

Please use this Link to support Annelies’ fund raising efforts.

Please use this Link to join our team.

Warm Regards,
Debbie and Annelies Fisher

Sept 21, 2010: A Short Story

2010-09-22T19:36:00.000-07:00

I wrote a very short story, imagining myself at a future event in Annelies's life. I am well aware that her life will probably not go the way I imagined in the story, and I most certainly make it a point to live in the present with both of the kids and not even worry about the future. But many hopeful articles, pictures, stories and video's as well as the awesome progress Annelies keeps making has allowed me to fantasize a little bit about the future. Who does not have dreams for their kids' futures? All that said, I will allow my kids to develop their own interested and not push them into the things I (or my Husband) likes and keep them away from the things we may not care for. Here is the story...hope you enjoy...

...As I sit here waiting for the music to begin, I marvel at the fact that out of all the things I dared hope for my daughter in the past 23 years, this was the biggest. This is the event I hoped for but did not want to hope for so much that I might be disappointed. This is the event I wrote off on the day she was born. One of many, come to think about it. This event is one additional step she has taken to become a person as involved, as part of society as anyone could ever be. This event is 20 years in the making.
On the day Annelies was born, I thought I knew a lot of things. I thought I knew she was not going to be going to normal schools, let alone College. Ruefully I mentioned to one of the NICU nurses that I would not have to put money away for College for this child. (I have a kind of sarcastic, dark sense of humor). I thought I knew she might even be oblivious, that for sure I would not have any kind of ‘normal’ human contact with her. I thought she would be forever a child, which could be cute when she WAS one, but not very cute as she progressed through her teens into adulthood. On the day she was born I thought my life as I knew it was over.
The first 12 hours of her life, I was not really mentally there. I was dealing with what I thought was some kind of punishment, karma. What had I done to deserve this? Now, 23 years later, that day is a fog, I do not remember much about it at all. One thing I remember. Around 3 am that night, I went down to the NICU. I asked to hold Annelies. The NICU nurse could hardly contain her excitement; here was a mommy ready to bond with her baby. I held Annelies and rocked in the oversize rocking chair next to her crib (I still remember how comfortable those chairs were, you could just kind of sink into them, something my sleep-deprived body was grateful for). Many thoughts went through my head; I cannot tell you what they were. Suddenly, Annelies opens her eyes and stared into mine. It occurred to me at that moment that I was staring in the eyes of a person much, much wiser than myself. I got a message; I don’t know from whom, maybe it was Annelies herself? Maybe god? The message is this: “Everything Will Be OK. Trust Me”. The moment lasted seconds but will be etched in my mind forever. Its profundity still makes the hairs on the back of my neck rise when I think about it.
Throughout the years, Annelies has grown up to be a person with a strong sense of who she is. A big part of who she is, is fiercely independent. It was evident to us even when she was little; always exploring and chatting to herself and her environment, always testing things and bossing her dolls around. She would get irritated if something did not work her way, but would always insist on trying it. On the other hand, if therapists or other family members engaged Annelies when she was not ready for it, she would let it be obviously known. School opened up a world for her, she loved being in her classes. She loved the social aspect of school and was (still is) part of a wonderful circle of friends both typical and with Ds. Her natural curiosity gave her the impetus to put that extra effort she needed to put into most of her class work, getting very decent grades and being able to be mainstreamed with her peers in most classes. Like her Mommy, she did not ‘get’ and was not good at, math. So we got extra help for her (her Brother was a great help with this) and she was able to ‘survive’ this hurdle. She actually ended up doing better than I ever was at it!
One place Annelies was able to be without any prejudice (at least before people knew of her) was at horse shows. Like her Mom, Annelies was born with a “horse gene”; she loved horses from the very beginning. One of her first adamant demands was that she be put on a horse, and I had to let go of all my good intentions to not let either of my kids ride until they were at least 8 years old (it is a good idea for kids to have the ability to empathize since they are working with a living being after all, and I advocate the good treatment of the horse to be a priority.) Annelies wanted to be on a horse (she had seen me ride) and once she had her first taste of riding, she did not want to stop. We found her a pony, nicely trained. The pony was nice and stout so Mom could get on and fine-tune her from time to time. Annelies learned to ride and take care of the pony at the same speed any child with interest in horses would have. She took her first lessons with my trainer. When Annelies was on a horse, with her helmet on, no one saw Down syndrome. They saw a young girl who displayed a fabulous partnership with her horse, garnering a number of successes at local shows. Yeah, you should have seen the judge’s faces as they saw her without a helmet, hanging around the show grounds. She received many compliments, and had a lot of ‘fans’ (the biggest being her 2 sets of Grand parents, on both sides of the ocean.)
When Annelies was 3, we started play dates with a local mom and her son. Annelies and this boy developed a deep friendship; they were crazy about each other from the beginning. Even though he did not attend the same schools, this friendship lasted and blossomed into a romance when they reached their teen-years. Annelies always had a date for her dances at school which I loved…I never went to any of them.
The music begins to play. I glance at my family, friends and my ‘Sisters’, the ones who have been here for me my family through the years. My Husband and I squeeze each others hands in part nervousness, anticipation, excitement and a little bit of melancholy. Today, our little girl flies the coop. I look at Annelies’ husband to be, and then focus on the back of the aisle. There comes my Daughter, ready for a new chapter in her life.

Sept 7th, 2010: Road Trip with a Delay

2010-09-07T02:33:00.000-07:00

Yesterday was the big day! We were so excited to embark on our first big Road Trip with Marco! Annelies is at Grandma's house, we decided it would be a bit too much for her. In light of all that happened last year we also decided that it would be great for Marco to have a little alone time with us. So we hit toe open road! And then...the car started doing weird things. It felt like a fuel filter problem first, but then it became quickly evident that it was the transmission. By this time we made it to Reno, and I am GLAD that was where we were. Pulled over into a parking lot and called AAA. Tow truck guy came out and towed us to a transmission shop, which was closed due to the Holiday of course. So the tow truck guy (really nice guy!!!) took Aaron to Hertz to rent a car and Marco and I checked into the hotel next door to the transmission shop (how convenient!). Aaron rented a cool mini van, transferred all our stuff from the car into it (a lot of room!!!) and we went to early dinner after that. Tomorrow morning (oh, guess that will be this morning) we will check the car in with the transmission shop and go on our merry way. On the way back we will pick up my car (we were going to pass through Reno anyway, so it is not a detour. Just a small detour in our finances but these things happen!)
We are going to Yellowstone and Glacier National Park. Marco and I can not sleep (probably from all the excitement today) so we are in the hotel computer room, there are 2 computers. Marco is watching Blue Men Group on the other computer. It is teh only thing he will watch on a screen (he does not watch TV-not interested). He always asks for Blue Men Group when he sees a monitor. I do miss my little girl, but am focusing on having a good trip and seeing some beautiful sights neither Aaron or I (or Marco of course) have seen yet.

Sept 3, 2010: Big Boy Bed and Surgery for Marco

2010-09-04T21:44:00.000-07:00

The other day, Aaron asked me if I thought it might be a good idea to remove one of the rails from Marco's crib. I told him to go for it, so he did. Marco had an absolute blast that first night. He was sooooo excited, that he could not go to sleep. It was SUCH a big change for him. That first night, he only came out of his room ONCE! We were really surprised and happy! Next morning, boy, was he ever tired. I figured for sure he would sleep well the next night. Wrong!!! The next night, Marco came out of his room, oh, about a million times. We lost count as well as our patience at the end (just a little...). But we hung in there, and eventually Marco went to sleep. That was the end of it, he now sleeps in his Big Boy Bed all by himself, he handles his new freedom like a champ, only comes out once in a while. On weekends, he does get up first and insists in opening all our doors and turning on all the lights just to make sure we are all up. So cute! I love that we took this big step to independence for Marco, and he did too! Soon, we will go shopping for a twin size bed for him with a good mattress (those crib mattresses have no support whatsoever).
Marco has been diagnosed with an inguinal hernia, and needs surgery. Luckily, it is a routine surgery, so nothing to worry about. Personally I have never had major surgery and it is weird to me that I have to send my 3 1/2 year old to the Hospital for one! (Part of me thinks: My gosh, these kids have been through so much already, is this really neccesary??) But it is, and in the grand sceme of things, this is relatively minor.
Marco and I met the Urologist who will perform the surgery, and I immediately liked him. Marco warmed up to him also, which is a small miracle for my very suspicious child (especially in an exam room, he is NOT a fan of exam rooms.) Marco will have his surgery at the end of October, and it will be out-patient, which means we can take him home soon afterwards, he can recover at home and will probably do so within days. I have several friends whose children had surgery lately (Major surgeries, nothing like this) and the kiddo's recovered like champs.
Probably to me, the scariest thing about surgery is the aneastetic. People have different reactions to them. But we already crossed that bridge last week when Marco had an MRI (on his brain) done as part of a study at UCD MIND institute. He went through that very well, just groggy for most of the day. Glad we had that experience, so now we know what to expect.

Aug 23rd, 2010: Back To School

2010-08-23T22:59:00.001-07:00

Most of you may think I am talking about kids. But this is about me, and my kids are not quite of school age anyway. Today, I went back to SCHOOL! Scary! I went to Sierra College way back when, and finished my BA at UNC in Colorado in the early 90's. Totally clueless about what I wanted from/in life, I got a business BA (International Relations) because I thought that this major would help me in 'the corporate world' where I figured I should make my living. I really did not have the creativity/guts back then to think of anything else (my true interest was in Psychology...I had a love affair with this subject by taking all the undergrad classes in it I possibly could without extending my time in College -and racking up more student loans-), so I did what seemed 'right' to me at the time.
I did have an interest in my major, and did very well in College. I also was lucky enough to meet Aaron there. And, my first job out of College was even a little 'international' ish...I did customer service for international sales offices for the company I worked at. It was a good job, but all the other folks I worked with did not have an international relations degree, some did not have a degree at all, and they were all about as (or more) successful at the job as I was, so I can not say that my major actually HELPED. But...I was happy to have had the "College Experience". This experience ended when I mailed my last student loan payment while I was pregnant with my first child. All that said: I would do it again!!!
But now I am going to study what interests me, and who knows where it will lead! For some reason, I thought that a Bachelor's Degree would be all I would ever do, I would really not go to Grad school because I was not Grad school material. Whatever the hell THAT means. I just did not see myself doing it, really did not think I could for some interesting reason. (No one in my direct family went to college, both my parents went to trade schools. Both were successful at their chosen careers. My older Brother became wildly successful in his field just by being creative and using common sense. Both my younger siblings -early 20's- are in College). Anyway, I thought that in order to 'do' something with a Psych degree you had to at least get a Master's, and since that did not seem to be in my realm of possibilities, I choose to go with a Business degree. So funny, because many people I know have...Psychology degrees!!! (So, my advise to anyone going to College would be: Study what INTERESTS you. Do not even worry about what you use your major for). But I digress. So, now I am taking an undergrad Psychology class at the local Community College. Gotta start somewhere. I hope to be able to continue and get a Graduate degree. There is so much to look at, so much to research. I love data, and statistics, and researching. (That is the reason I am good at my current job...there is a LOT of data involved there...). We will see what happens, but for sure this time I am not going to let myself be limited by what I think I should or can study. I am enjoying it so much more now because I am doing what interests me.
For those of you who ask if I regret my earlier path? Heck no! Look at where that got me, I would have never met Aaron, and I will always cherish the college experience I had! It was probably the right thing for me to do back then. I think we all get where we are going by taking different routes. Some routes are very direct, some are a little more de-toured. Turns out my teacher actually went back to school in her late 30's and got her PHD 4 years ago, in her late 40's. There is hope for me yet...

Aug 16th, 2010: Camping Pics!

2010-08-16T17:04:00.000-07:00

After 10 years of vacationing in hotels, the Fishers went CAMPING! We went with a couple of families to a large communal-type camp ground and had a BLAST! Here are some pictures...

Some highlights:

Sleeping in a NEW tent
Getting beyond dirty and no one cares!
Playing with a huge styrofoam plane
Eating outdoors
Wonderful friends
S'mores and great conversation by the campfire

Mid Aug, 2010: Almost A Year

2010-08-14T12:25:00.000-07:00

Hard to believe almost a year has passed since we received Marco's diagnosis. SO many emotions, thoughts and feelings made this past year interesting but challenging. Very challenging.
I've been asked which diagnosis was the most difficult for me, so sometimes I reflect on each of them. There is no easy answer to this question. I look at these diagnoses as part of who my kids are, even part of who Aaron and I are, because each one sent us on a road to self discovery we would otherwise never have travelled. But in no way do they DEFINE any of us. Marco and Annelies are kids; they enjoy their lives, have good days and bad days, quirks, sense of humor, favorite toys, foods and people like all children.
Annelies's diagnosis was like the proverbial thunderstorm out of a clear blue sky so to say. There was never a time we could really deny that she had Ds (I tried for a couple of hours on the day of her birth, but quickly got past that to allow me to deal with all that came with it).
I like to believe I am a realist, but with Marco I allowed myself to be in denial and postpone the appointment that eventually would lead to the diagnosis. I sometimes think: "Oh, if I had only done it sooner..." but then stop myself. I don't want to pave my road to the future with self-blame. A word on denial: I learned it takes too much energy to stay in denial too long. Denial plays a certain role in self-preservation though. When we allow the grief cycle to do its thing, there is a place for denial. I have since heard from friends who know people who have kids who show definite signs of Autism, but don't do anything about it. It can be possible to not do anything if the autism is mild, I guess. If Marco was born in the 70's there is a great chance he would have not gotten this diagnosis, and eventually would have been OK (if not a little different maybe, in behavior). But I think the feeling that 'something seems wrong' has to eat away at those people. I hope they find the strength to deal with it, for the sake of the child and themselves.
I hold dear the memories of both my childrens' births. I had one experience with Marco that I did not have with Annelies, that is a 'typical' birth and new-born experience. I thought Annelies's diagnosis was a punishment towards me, bad Karma (or whatever you want to call it) coming my way for something I did wrong. For a few moments (hours) I thought my life was over, that I would never be happy again. That life with Annelies would be a cross to bear. Of course I realized that this was not the case, but that she was (and is, in every way) such a blessing. Both kids are.
Overall, I think the Autism diagnosis was probably the scariest one for me. I feel that Autism can look so much like an 'invisible' thing that takes over a child. Behavior is distorted, and communication lines are broken (or not established), making it difficult or impossible for the child to tell parents what is wrong. I was also afraid of it 'getting worse'. What if we woke up one day and Marco was like Rainman? Or completely inable to comunicate? What if Marco freaks out in the supermarket and everyone will look at us and think I have no control over my kid? And probably my biggest fear: What if other kids look at him and wonder what the heck is wrong with him? Think he is different, weird? Many thoughts went through my head. But once Marco began his therapies, he also started to speak more and show so much improvement. His communication gets better every day, he for sure can tell us what he needs/wants. He is now used to having a little sister around who wants to get into EVERYTHING he does, and is dealing with that probably like any older brother (from what I hear from my friends). I am no longer afraid that his progress will halt, I know that he will continue to do well.
One note about my biggest fear: I am sure that kids notice Marco is different. But the ones who can see past this and still be his friends, will be his true friends. The ones who don't want to be with him because he may act different...well, Marco would probably not want them to be his friends anyway. I guess this will be the same for Annelies. Maybe that is one of the biggest gifts these diagnosis will give my kids. They will know who are their true friends.

August 6th: Physical Therapy for Annelies

2010-08-07T20:59:00.001-07:00

It had been a while so it was time for me to freak out once again about one of my kids' development. This time it concerned Annelies, and the fact that her friends seemed to be able to climb up stairs where Annelies had not yet done so. In her last IFSP we finally were able to add PT (as well as speech) so I was happy for this. Now Annelies gets ST, PT, OT and general Early Infant Education as well as a weekly play-group. She has a packed schedule. Our first visit with the PT was...uh...interesting. The PT concluded that Annelies is very stubborn, and has a very strong will (tell me something I didn't know, lady). Although this is a wonderful thing that will serve her later in life (with some serious guidance), it makes her less 'mallable' than other kiddo's, sometimes making sessions with therapists more challenging.

I shared my concern that Annelies can not crawl up the stairs, nor does she seem to have any interest in it. I also shared that this concerned me because her friends seem to be able to climb up stairs verrrry well. One time I found Annelies on the 4th step and kind of freaked out. Maybe THAT was the reason that she doesn't do it, since I really never freak out around the kids that much (my freak-outs only happen inside my head...).
She asked me if anyone had addressed "motor-plannimg" with me. HMM, that was a new term for me (so the answer was 'no'), and another thing to freak out about. (I think one of the reasons I have my 2 kids is to teach me a lesson about not worrying so much- so far it has not really done the trick though). Anyway, since motor planning was not brought up to me, and I thought that the fact that Annelies may have trouble with it made me worry that maybe she was more behind than others, and that she may be less capable than others physically and cognitively. But as I was speaking more with the PT, I kind of started thinking that Motor Planning is a challenge for many kids with Ds. Maybe it just means they need to be SHOWN what to do, what the logical progression of movement is for, say, standing up (one hand on table, second hand on table, on one knee, on other knee, on one foot, on other foot first and eventually one hand on floor, then foot, foot). Same for crawling up the stairs. So we showed Annelies how to climb up the stairs. She resisted when we insisted on her getting onto her right knee (she wanted to just use her right foot and not her knee at all, but the PT said she had to get on her knee first). But she got on the first flight of stairs and then went towards the second, so she climbed the whole way!
Next morning, Aaron was alone with Annelies. He was in the kitchen, and heard thump thump in the upstaris halleway and realized Annelies crawled up the stairs in record time all by herself, without anyone asking her too. Now, she can't get enough of climbing the stairs, like a new world opened up to her! Little superstar... :)

What's in an IQ?

2010-07-02T18:20:00.000-07:00

One of the most exciting things about the birth of a baby is the "clean slate" of possibilities that accompany him or her. New parents look at their beautiful baby and imagine the things he/she can and might do. There is no limit to this imagination and the feelings of hope and anticipation that accompany it, which is such a wonderful ‘boost’ for new parents.
When your child is born with Down syndrome, your "clean slate" of possibilities is quickly filled in with a list of “Things to be Aware Of”, “Things That Can Go Wrong”, in essence threatening to take away the wonderful opportunity to imagine the great things our children will do. Among a myriad of potential medical issues from obesity to Leukemia is the mention that we can expect our children’s IQ to be between 50 and 70. This means at best, mildly mentally retarded -70- (I hate that word but am using it purely in a clinical form here) to moderately so -50- .
I feel that this sucks on a few different levels.
For one, I believe that the accomplishments of a child, or lack there-of, are largely attributable by what is expected of them by their parents. This goes for typical children as well as those who have developmental delays of whatever kind. Time and again I have seen articles and films describing a person with Ds or other disabilities who "exceeded all expectations" because he/she accomplished "unexpected" things. Parents in these cases always said: I expected from this child exactly what I expected from my other children, no more, no less.
It is difficult for a bit more of an easily intimidated/influenced, somewhat insecure parent of a child with special needs to stand above the expectations society wants to put upon our children. It is a challenge to have a kind of ‘blind fate’ that ‘Things Will Be All-Right”.
I believe that parents are the ones who put the biggest expectation on their children, and thereby communicate to these children what they are, enabling the child to reach for whatever those expectations are. You can have a super smart child who is an under achiever because parents just did not expect things from that child, sadly we see this over and over again. The reverse is also true, there are plenty of people who’s IQ’s might measure out to be ‘ below average’ but who absolutely accomplished things in life that are remarkable just because they were encouraged and believed in.
A few IQ-related things I feel very strongly about:

1) IQ is not the only measurement of intelligence. There are a lot of really dumb-ass smart people out there! There are things called “Common Sense” or “Street smart” that take us quite far in life.
2) ‘Our’ kids are NOT ‘doomed’ to have an IQ of between 50 and 70, just because they happen to have Ds. I have a feeling that this generation, if someone takes the time to track IQ’s, will show an increase, simply because we as parents will put higher expectations on them.
3) One person’s IQ can be measured on different occasions by a different or the same person, and come out to be different so it is NOT an absolute by any means.

A big revelation came for me when Annelies was about 4 months old. Even though it was evident from day one that she was a persistent child (she was trying to lift her head up 12 hours after she was born, I now realize how BIG that is!!), at around 4 months I started to relax and feel “OK” about the future. I began to realize that Annelies’ future is just as bright as that of any child out there, but that it would be up to us, as parents, not to put any kind of ‘ceiling’ on our expectations of her. I am thankful for the parents who began to keep their children at home in the 50’s and 60’s rather than having them raised in state institutions. I am thankful to the same parents for blazing a trail to inclusion in schools, for without this, we would not be able to even begin to expect ‘typical’ things from our children.
We have a way to go, and most certainly I felt like I was thrown into a battle I did not want or expect to fight when my Daughter was born (or, for that matter, when my son was diagnosed with Autism at age 30 months). But alas, here I am. Here we all are. And it will be OK. It will be more than OK. It will be excellent, because we will expect it to be.

Annelies enjoying a playdate with her friend Gracie at the park.

June 25th, 2010: Just Some Updates

2010-06-25T19:53:00.000-07:00

This poor blog is in big danger of getting neglected now that I am back to work. I will do my best to post once a week though. (Not even sure if anyone READS this anymore anyway...) Luckily, I am currently not working on Monday's, which gives me more time with the kiddo's. We have 3 different therapy appointments on Monday, so it works out well.

Last Monday we took advantage of a free morning by having a music play date! It was the first time for me to host this many people in our house. I counted at least 15 kids (this included siblings). So much fun! Annelies had a great time, she was more comfortable and actually was intrigued by the guitar (see pictures). Maybe there is a little future musician in there :)

Wednesday, Marco had an MRI appointment at the UC Davis MIND institute. The grand plan was to have Marco fall asleep on the way there, get there with him still asleep, get him out of the care and into the building, preferably directly onto the MRI table, and do the procedure (30 minutes of weird gnashing sounds which are kind of dimmed by a headset. In perparation for this, we had let him listen to MRI sounds on a CD with the headset on while asleep. This was no problem.

So, we set off for UCD MIND and Marco fell asleep within 5 minutes. Check! We were high-fiving each other, it was pretty hysterical (we were being quiet of course). Marco was even snoring. Then we got to the exit, and Marco WOKE UP! Darn! I called the lady we had the appointment with, and she asked if we were willing to keep driving. So we drove for an hour, Marco WIDE AWAKE the whole time (We drove to Roseville, then turned around and drove to Galt. Crazy!!!). I called and told her it was not going to happen tonight, and could they do this under anaestesia? She said yes, but best to try without. She was going to call me for another appointment. We drive home, get near the Gereenback exit and guess what? Marco ASLEEP! Since only 5 minutes had passed, I called the lady back, and she was thrilled and told us to go ahead and come on in.

This time Marco stayed asleep all the way into the room. Then he woke up, and was suspicious of the sounds the MRI machine made (kind of a whoosh-whoosh sound). He was super tired though, so I held him in the rocking chair in the darkened room. Twice I tried to lay him on the bed by the MRI machine, he would not have any of it. Can't blame him! Altogether, we drove for 4 hours and spent one hour at the UCD MIND image center. It was an intersting night allright! We will probably have the MRI done under anaestetic, because it would be good to have the images just to make sure all is well with his brain, and to have a 'baseline' for future images (as part of this study he will have an MRI annually).

June 18th, 2010: Hup Holland (World Cup Soccer)

2010-06-18T20:11:00.000-07:00

OK, we are ready for the NED-JAPAN game tomorrow morning!!!

June 16th, 2010: Made a Difference to That One...

2010-06-16T21:10:00.000-07:00

We waited anxiously...

I got to hold Sofia...what a wonderful treat!!! Sofia and her Brother are starting to bond...so sweet!!!

The Sanchez family...all 6 of them!!!

A long time ago I read a story about a little boy who was on a beach throwing little crabs into the sea. These little crabs washed onto the sand, and if they were not lucky enough to be caught in an outgoing tide, they would die there. The beach was littered with these little crabs. A gentleman came by and asked the little boy how he felt about the fact that he could never, ever help all the little crabs out there. As answer, the little boy picked up a crab, threw it into the sea and said: "Made a difference to that one".
Recently, someone mentioned recently to me how they felt that adopting a child is nice but you can't possibly help all the childern out there, so why bother? I reminded them of the above story.
Yesterday I was honored to be part of a homecoming so, so special it will be with me forever. Yesterday, little Sofia, 16 months old, came to the US with her forever family. She was lovingly greeted by her 3 handsome older brothers (what a lucky girl!) and a group of nearly spastic, emotional, happy, proud 'aunties' holding signs and so much love in our hearts. It was something to behold. I have no pictures, because I forgot to bring my camera (it was a challenge to get myself out the door in time because I made a sign...and it was all very last minute...because well, that is how I roll).
Sofia let herself be held by all of us, she was so cool about it all. It will be so neat, years from now, when she reads her Mommy's blog and sees pictures and video (someone took video, did they not???). She will know what all the hub bub was all about, how super special she is and will always be. While listening to the happy chatter of my Sisters, I could not help but think: "We made a difference to that one..."

May 31, 2010: Running (OK, Jogging...)

2010-05-31T20:48:00.000-07:00

This post is about me. I usually do not like to talk (or write) about myself, but maybe others recognize themselves. Most of you who know me, also know I have a weight struggle. This has gone on for most of my life, although I have had "thin" years. Looking back at pictures when I was younger and thought I was fat makes me think: WTF was I thinking, I was not fat there. Somehow the fat thoughts crept into my brain and never left. So now that I have 2 kiddo's, and our little family is complete, it is time to do something for myself.
Two months ago, Aaron and I went to the local gym. I decided that I was going to do something GOOD for myself during my leave from work. It was fun, I showed Aaron the weights (I used to work at a healthclub. Go figure. I used to HELP people lose weight.) After the weights we went on the treadmill. I had been walking on an incline so decided to do that, Aaron got on the treadmill and started running (the guy has not worked out in YEARS, but for some reasom when you get a guy on a treadmill, walking just won't do for them). So after 5 minutes I thought, shoot, I will jog, maybe a mile. 2 miles later, I stopped. I felt goooood! So I returned to the gym the rest of the week and jogged 2 miles. I have been jogging for a while now, and really enjoy it. I think it is because when I work out, it is ONLY FOR ME. When I do my other hobby (horses), I still always have to consider someone else (the horse), but when I work out, it is just me.
Last Saturday I was crazy enough to agree to work out with 2 mommies who are wanting to get in better shape but are not overweight. I was the slow one and kind of wanted to berate myself for even going (they might laugh, they might look down on me, all those kinds of thoughts went through my head that are probably not true because they are some of the nicest women I know, like so many I have met thanks to Annelies. Oops, run-on sentence...) It did make me think about goals for myself (we will talk on a regular basis about our goals and eating and hold each other accountable.) I also learned some additional excercises and was reintroduced to lunges. So this morning at the gym I used the indoor soccer field to do lunges and other excercises. I am sure I looked like a dork but I really did not care! It feels good to do something healthy for myself finally!!!

May 20, 2010: One Last Time

2010-05-20T21:50:00.001-07:00

Being a parent, it is tempting to feel you need to fill ALL the needs your little one has. To know the answer to all their questions, be the solution to their problems. But sometimes we need help. Funny enough, we needed Annelies to learn that Marco needed help. Annelies introduced us to Early Intervention so that we could open our eyes and see what Marco's needs were. Thank You Annelies. She is so, so wise.
Through Marco I learned that I, the Mom, do not have all the answers. When you deal with Autism, there are bridges that need to be crossed with the help of professionals. (OK, maybe this is not the case for all parents. Maybe there are parents who can do it and have done it all, and my hat is off to them. I am not one of those parents. I needed help.) The first person who helped Marco and us was Eric, his Speech Pathologist. Thankfully we were hooked up with him before the laws changed last summer.
Eric helped us see the different ways we could communicate with Marco. He showed us not all communication is verbal. This was information I knew in my heart of hearts, but when as a parent, after receiving a difficult diagnosis (and I have to say that Marco's Autism dx was WAY harder than Annelies's Ds dx) you just pain so much for those first meaningful words it is not easy to remember all you know. We had some desperate moments, Aaron and I. We wondered if Marco was EVER going to talk. We also had times where one of us was up, the other one down. One time I asked Aaron to go to ST with Marco, because I could not handle it. Aaron came back from the session so elated with the things Eric was able to do with Marco, which thrilled me because I was not able to see it at the time. This helped.
Of course, having SP's in our lives means that we do have to say good bye sometimes. Wednesday was our last session with Eric, because he is moving to the Bay Area. New opportunities await him, and I am happy for him while being sad to see someone leave our everyday lives. There is no doubt that there are a LOT of lucky kiddos in the Mountainview area!!! Having Eric leave makes me realize how much some of these wonderful people, who choose to study their butts off so they can help families like ours, mean to me. So, thanks Eric. Thanks for bridging a gap, for helping us and Marco. You truly are a part of our family, and are forever in our hearts. Good Luck to you.

May 16th, 2010: My Little Destroyer

2010-05-15T16:01:00.000-07:00

It cracks me up when people (usually of an older generation) oh and ah over Annelies and call her a "sweet little angel....so gentle". While I am OK with the compliments, she is a sweet girl MOST of the time, she has a destructive side. A verrrry destructive side that rears its head when she is in the 'play area'. We moved to a larger home, so we now have the luxury to dedicate one area of the living room, that even has its own window, as a play area. When Annelies is let loose there, she does NOT waste any time in turning the storage bins upside down (OK, pun not intended...seriously). Here are the pictures as evidence.

HUGS OXOXOXO

04/28/2010: So Who is the PT Actually For???

2010-05-01T15:41:00.000-07:00

If you were to ask Sophie the cat, she would say: Well, once or twice a week these ladies show up at the house with ALL THESE COOL TOYS for ME to play with! Although we have a LOT of things to keep our kitties (3 of them) happy, they LOVE when Esther shows up with her loot. The latest awesome thing was a cool box shaped toy to teach Annelies about spatial relations and her body, where things (and her body) fit and more cool things that help babies relate to their world/environment. Sophie gave it a test drive first though... After Sophie OK-ed the toy, Annelies got her session with Esther...

April 18th: How to Communicate with Marco - 101

2010-04-18T19:22:00.000-07:00

Take One:

Mommy: Marco, do you want peas?

Marco: No! (OK, so Hallelujah, Marco now gives Yes and No answers to most questions appropriately. I ask them in Dutch and he answers "Yes" or "No" in English which is fine by me. He answers very snappy and forcefully, hence the exclamation marks behind his answers.)

Mommy (thinking to herself); D'uh! while mentally smacking herself on the head.

Take Two:

Mommy: Marco, do you want to eat?

Marco: Yes!

Mommy (mentally) gives herself a high five and dishes up the peas.

Here is the result. Hah! I outsmarted the kid again!

Incidentally, this was to be a blog about Annelies and I have written very little about her. Right now she is busy growing teeth, about 3 at once 2 times in a row. She is a trooper!! I will write more about her soon.

Hugs and Kisses!

April 14th; Taking a Break...

2010-04-14T15:37:00.000-07:00

OK. So things have been interesting for us as a family in the past year and a half. Annelies was diagnosed with Down syndrome when born, and Marco was acting differently than we thought a then-2-year old should so about 6 months of being in denial he was diagnosed with Autism. Most of you know that the Autism Dx came last September. I took a few days off work, upped the anti-depressants, got Marco enrolled into a GREAT program thanks to our awesome early intervention coordinator, and re-focused on work where we had to complete a HUGE migration. This is project I had been working on for over 5 years. (Basically a system that we built in-house to deal with reporting transaction information in many different ways- those of you who I work with will laugh at the simplified explanation, but I don't want to bore anyone).

Sure I had initial issues with Marco's diagnosis, but I thought I had it all under control. I worked a lot, had a lot of early morning meetings (I mean, really early, like 4 am which happens when you work with people in India), hashed out and wrote a lot of procedures, worked on a lot of last minute stuff before the migration and a lot of fixing stuff afterwhards. It was the most successful implementation I have ever been a part of, and we were all super proud of what we had accomplished. By January, most of the bugs were fixed, and things were rolling right along. And I began a downward spiral like I have never experienced before. It is almost as if it hit me then, at that moment when work was becoming less demanding and I had time to think about things, that I put into this world 2 children with disabilities. I went round and round with self-blame. Seriously, if I ran into some one in the same position, I would never think they are to blame, but where it came to myself, I opened up a big can of blame. Nice, and not at all productive. I was tortured with the questions that came up in my head: How will the kids develop? Will I ever have a conversation with Marco, or will Marco ever have somewhat of a normal life? I have been asked about how I felt about the 2 diagnoses, which one was "worse". I would have to say the Autism was the worst. With the Down Syndrome, it was obvious when Annelies was born to both Aaron and I. (I think I knew, at some level, during my pregnancy.) The autism was something that was easy to be in denial about, especially since Marco is what they call "high-functioning." But autism is so "invisible." It is like a scary thing that takes over your child and can make him or her throw tantrums, in some cases not communicate at all and stare blankly out into the world. It can get worse. That is the scary thing about autism. Marco is stable, we think and hope, and that fear is subsiding a bit, but you keep thinking and hoping and really just having to have faith that "things will be OK".

With these diagnoses so close together (and it is rare to have 2 of them in the first place) I think I felt I lost all control. It is kind of like being hit by lightning, it happens out of the blue, it is a shock to the system, and you are NEVER THE SAME. That moment of diagnosis changes your life and makes us realize how little control we have over huge events in our lives. But it also shows the strong side of us. We deal with things we never thought we possibly could when we saw others deal with it. And at some point we appreciate ourselves more for it. But I hit a brick wall, started freaking out about all the things that need to be done to help the kids and also started looking at the world differently. Where I normally cared about my job, I began to not care. How important was this compared to the kids? I would wake up at night freaking out and being generally depressed about having to go to work. It was hard to focus. I was not the employee I really normally am. (Funny enough, my Manager told me he really did not notice, felt that I handled things so well...so I fake it well...). I explored my options and found that California has a financial compensation plan in conjunction with the FMLA (Family Medical Leave Act). I contacted HR, spoke with my management and arranged a 10 week LOA, of which I am now in the second week. It has been nice. Of course I know I need to go back at some point, but for now I am getting a mental break, counseling to deal with the Dx-es, and am working out somewhat regularly. I am spending time with the kids, going to their therapy sessions, and my Husband, and am kind of re-finding myself. It is easy to get lost in all the obligations of life, but I think our main obligation should be to ourselves first, THEN we can meet the other ones, especially the challenging ones.

Marco 17th, 2010: Bye Bye Mama

2010-03-17T06:36:00.000-07:00

Three simple words, easily taken for granted by most parents of little ones who develop typically. Not so in this household. Until yesterday, when one of us said goodbye to Marco, we would tell him Bye bye (or Dag - in Dutch-) Marco and Marco would promptly repeat "Bye Bye Marco", then we would tell him to say Bye Bye Mama (or Daddy, Oma, Opa or whomever we were saying bye to.) Yesterday evening, Aaron was getting Marco ready for bed and I was heading out so I stopped by Marco's room to say bye. I said "Dag Marco" and he looked at me (this is so key for Marco- he is learning to make eye contact while addressing people) and said, clear as a bell: Bye Bye Mama. Aaron and I were almost in tears. I walked on air the rest of the evening with the feeling that for now, I knew that Marco will find his way in this world. His own unique way.

March 4th: Small Breakthroughs for Marco (It is important to celebrate the things that seem small...)

2010-03-04T12:07:00.000-08:00

One of Marco's big challenges is not talking directly to/at people. He talks up a blue streak, but not at us. In the past 3 months he has really begun to talk, talk, talk but it is all repetitive stuff, he repeats things after us but does not ask us for anything. (So at least we know there is language in there. I consider this a baseline, a place to work from. Not a negative thing :) )
The other day we were in the car, the 4 of us, and from the back seat comes a little voice: water...(the spelling is the same in English and Dutch, but he used the Dutch pronounciation). I looked at him and he repeated what seemed like a request. Of course we were in the car. Damn! Here Marco asks for something and we can not grant his request. 10 minutes later at my Mom's house, Aaron remembered his request, we gave him a little bottle of water (he loves having his own container, that is a typical small kid thing though) and he drank like he was dried out. The next day, the same thing happend, this time he asked for juice. We were in the car once again, but I had juice with me this time.
This morning we got to school, and I had a breakfast bar for Marco (stellar mommy that I am, sometimes I feed my kids prepared food.) I gave it to his tutor to give to him and she bent down to his level and asked him: Marco, do you want this? And he said "Yes". WOW. Sometimes it is interesting (I have no other words) to see what our SP's (Service Providor- anyone who works with our kids) can get out of our kids. If I let it, it can actually make me feel a little bit bad as in "why did I not think of this". But I have to remind myself that these people are here to HELP us, and we can learn from them if we actually allow ourselves. It is the best thing for the kid.

March 1, 2010: Overwhelmed & Letting Go (or Re-directing?) Dreams.

2010-03-01T20:03:00.000-08:00

I think it is normal as a parent to sometimes get overwhelmed. I really seem to have reached something like it lately. There are times I feel I might not be exposing my kids to the opportunities out there for them. There are so many things I am not taking advantage of. Yes, it was my choice to work (I actually never really gave myself the choice, it was kind of an unspoken that I would continue to work.) Typically this is not that big a deal, I think, if you are a parent. We have a lot of extra-curricular activities for the kids though, just because of the nature of their dx-es. I hate when I can not take advantage of an opportunity for them. It stresses me out.
A the same time, I like riding horses. I have one horse I bought 6 years ago, for whom I had dreams. He is a nice horse, with talent. I got him for a good price. WHen I saw the ad, I remember the tingle in the back of my neck. This was my horse. I had a good time starting him. Took lessons, enjoyed that, looked forward to going to shows. Never did take him to a show though. That's OK, because the kids came instead. I always thought that I would get back to riding regularly and getting the horse ready for shows. "Maybe this year" I thought last year. Then Marco's Dx came. It really hit me for a loop, and even though I functioned pretty decently, I really had a hard time. Not only with the dx but most certainly the 6 months leading up to it. I was in denial but I knew something was up.
Now I am kind of dealing with Marco's dx, but I must honestly say it is harder than Annelies's. Why? I do not know. Is it because it is a second one, and it just is a little too much to deal with (well, of course we have to deal and we will. There is no question there.) Marco is doing better, he is making progress. But autism is such an unknown to me, such a black hole. What if he gets worse. Or God forbid, what if Annelies has it? Sometimes I drive myself up the wall worrying.
I have not been riding regularly. That stresses me out a lot too. Here is a nice horse who is not getting the attention he so deserves. (Luckily, all the horses are out in pasture, so they are not stuck in a stall, they get movement at least). Today I kind of hit rock-bottom and the thought came up that I might give up my horse. It will take some of the worry away of not spending time with him, and I can focus better on the kids and my work. It sucks to give up a dream, it really does. But maybe it is the best thing to do for now.
Maybe I will sleep on it.

Feb 26th, 2010: Speech

2010-02-25T19:43:00.000-08:00

It occurred to me that I have not blogged in over a month, so it is time to share some thoughts and pictures. With Marco just 3 and Annelies at 15 months, speech is now a very central skill we focus on in our household. Besides going to his ABA school 5 hours a day M-F Marco also goes to ST 2 times 30 minutes at the Loomis School District (this just started) and he sees a ST once every 2 weeks (Eric, who has been working with Marco -us, really, I guess- for almost a year now.) It sounds like a lot, but Marco does really well with everything. Going from a full time schedule to a part time at the ABA school has been wonderful, he used to be just exhausted at the end of a day. Now he either goes home or to Daycare, and usually he gets a nap, which makes for a much happier little guy.

I was nervous as hell bringing him back to daycare. He had not been there for 2 months, and during that time received one-on-one input at his ABA school, and I was scared to death to bring him back to a less structured environment. On the other hand, I was happy for Marco to go to a less structured environment so he could have a chance to observe other kids, interact if he wants or do his own thing (they are not really strict, it is not even pre-school yet). It turned out a lot better than I thought. When I bring him at one, the kids are settling down for their naps, so the teacher has Marco's bed all ready to go. She sets his bed up near a table so he can play or finish his lunch if needed. He has been taking at least 1 hour naps there!!! That tells me that yes, he needs that nap still. Otherwise he is doing pretty well, he participates in things quietly.

There was a time when I was hoping for Marco to start repeating things we said. I was freaking out (on the inside) that he was not doing this, because it is such an important, logical step in a child's learning. Now he is in that repeating phase, and he has days where he just talks up a storm. Of course, now I am looking forward to some receptive conversation. LOL. I guess it is a parent thing. We want our kids to do well, no matter what is going on. But one thing hit me like a ton of bricks yesterday. This came after a conversation I had with a colleague who has a 4 1/2 year old who is getting ready to start KG. She is not sure if he will be ready, and some of this readiness has to do with speech. It hit me like a ton of bricks that a child's speech level does NOT indicate his/her INTELLIGENCE level. OK, I think I knew this deep down, but it was nice to kind of have that thought come to the forefront of my conscience (Hah, I don't mean to get all weird on you here...). Anyway, I am adding a pic of Marco having a Yuki moment.

Love to All XOXOXO

Jan 31, 2010: We Are Standing!!!

2010-01-31T19:10:00.000-08:00

Look at what I found this morning when I came to get her out of bed! She is pretty proud of herself, too!

Jan 21, 2010: Happy 3rd B-Day Marco!!!

2010-01-21T20:37:00.000-08:00

I can't believe he is 3 already. It seems like he was born just yesterday. And on the other hand it feels like a lifetime...

Marco's birth day was so incredibly special, such a wonderful beginning as a parent. We have been through our share of things over the past year, and Marco has rolled with the punches right along with us. There are plenty of moments where I worry about the future of my kids. Will they be independent one day, will they be happy, will they have an OK time in school or will they be teased? I think every parent goes through those moments, special needs or not (sometimes I hate the term 'special needs').
Today I made it a point to just relax and enjoy Marco. Enjoy the moments with him, especially picking him up from school and taking him to dinner before his Speech Therapy. We sat and enjoyed dinner and I took a picture of him. He asked me to turn off the lights when they came on, I explained to him that these were not lights I had any kind of control over. He tried to stand on the chair, I made him sit. He danced outside the window by shaking his booty, and made the people who were sitting on the other side laugh. I was told how cute he was, once again. (Good god, if I was given a dollar every time someone told me how cute he was I could send him to College one day. As it is I just hope he can become REALLY good at soccer.) Then we went to Speech Therapy. Probably could not have had a better B-day party for him if I had planned one. ST is really a kind of play therapy. Although maybe on the surface it looks like play, Marco is learning from it. He laughed a lot today. He has an incredible report with his ST that warms my heart. I am so glad that Marco bonds with people (besides his Dad and I) who help shape his life, from whom he learns. Many of Marco's behaviors do not point to autism at all, which makes me happy.

Now that Marco is 3, he will have his ST via the LUSD. I met Ms Gabby, who seems incredibly nice and like Eric, is gifted at what she does. I look forward to Marco's chance to spend some time in the classroom, to get a feel for what that is like. He will go to his ABA school only 5 hours a day (8-1) and on M-W-F he will go to daycare in the afternoon (both are near my work so I will shuttle him in the middle of the day). The same day care he was going to before he started ABA. It will be nice for him to be around kids and just get to BE a kid. Play and interact when he feels like it, but to not be forced into anything. I felt 40 hours of ABA was a little too much. I was bringing home an overly tired child every night, who did not even feel like having dinner. Now he will have some energy to spare, and I dare think he will actually absorb more. (That is just my mother gut-instinct, of course studies have shown that 40 hours of ABA is what is needed for the biggest amount of benefit. I am going with my gut...no study can beat a mother's gut instinct, right?!?!?!?)

Jan 18, 2010: Milestones

2010-01-18T20:36:00.000-08:00

Proud Daddy

Wind-blown Annelies in front of Lake Tahoe

It has been a while since I wrote. Last entry was when Annelies and I were in Holland. It turned out to be a wonderful trip, Annelies and I both enjoyed ourselves tremendously.

It was good to see our guys again though, after almost 2 weeks! Marco had grown, and has many more words in his reportoire in both Dutch and English. He now counts in English really well, and in Dutch pretty well. At first he counted One-Two-Three-Four-Five-Six-Mama-Eight. So very cute. He laughs a lot, and communicates much better although he does not yet communicate very directly (we can not yet have a conversation with him). I got to a point last week where I asked Marco's ST if I will ever have a conversation with him. It is difficult because I see the kind of progress kids his age make and I get a little freaked out. I do not doubt Marco's abilities. He is also very careful but steady physically and he most certainly understands dangerous situations in play (he respects heights, for example). I still have to be careful in the parking lots but he seems to understand the urgency of staying with me. He is now mimicking both speech and actions a LOT, so I think he is developmentally going forward and will catch up at some point.

With Annelies, he is pretty cute. Annelies is crawling now, so to stimulate her, I put toys or her bottle on the floor for her to crawl to. Marco picks those things up and brings them to her, so cute.

We took 2 family day-trips up to the snow. Marco took some time to get used to the snow but before long he was throwing snow balls and running around in the snow. We are going up for a couple of days in February, looking very much forward to that.

Annelies is now crawling (really crawling, on all fours). We also started standing with her, where one of us sits in front of the table and she sits on a bent knee so she can pull herself up and sit back down on the knee. I am taking it one step further and making her bend one leg at a time. She got a great little rocking horse for her B-Day (Thanks Joan!!!) which she will be using a lot (I just put it together). Her balance is wonderful, and she loves to be in an upright position like that. Adding a couple of pictures of the kids....Will write more soon.

12/10/09: Annelies Goes International

2009-12-13T08:08:00.000-08:00

The big day began with a telephone call to tell me we had an emergency with the system at work (I must say, neither of my kids kept or woke me up as much as this 'newborn' system we migrated 2 months ago, LOL. Thankfully I get PAID to deal with this system). There have been too many of these early mornings in the past month, but because we were getting ready to skip the country I had enough energy to deal with what I could before handing it off to my co-workers so I could finish up packing and bring Marco to school.
It was difficult to say goodbye to Marco. He cried a little (he usually does now, the school is still so new for him), which made it even harder. Marco is in good hands while I am gone, getting some quality Daddy-time, and the rest of the time will be with Oma or at school.
I was still packing when Leif arrived to take us to the airport. It was a nice drive to the airport, all the work-worries kind of dropped away and I felt so good getting away from it all and just not thinking about it anymore.
Check-in went quickly, I was in the line for families going through security so I had help from others (it is a bit of manouvering with a child and a stroller by yourself, but not impossible). When we boarded I kind of had a small feeling of "ohmygod, how are we going to survive the next 10 hours? Cheapass Dutch person I am, of course I did not get a seat for Annelies. She was going to be in my lap the whole flight (or on the floor or whatever I could pull together. If I can get something for free, by god, I will. So proud of my roots!!! I was thinking: will Annelies behave or will she be loud and abnoxious? Will I regret not shelling out that additional 800 bucks for another seat (Shit, that IS a lot of money), but that fear was alleviated quickly because there were a lot of kids around us who were louder than she normally tends to be (Yes, that is saying a lot because Annelies, like the Vlaming side of the family, has a good set of pipes and does not shy away from using them).
Takeoff was smooth, I had a bottle for her and she kind of fell asleep as she was drinking. One of the flight attendants came and brought us a crib for her that I was able to put in front of my feet. A word about the service on KLM when you travel with a baby: EXCELLENT. I was impressed and immediately put at ease. The aforementioned steward came and checked on us 4 times during the flight to ensure we were OK. I also sat next to a Mom who had a 5 month old who travels back and forth quite often (she is Dutch, lives in Oakland with her Husband who is from India whom she met when he was doing an MBA in NL). We talked and had a nice time.
Annelies woke up around 3 hours into the flight and was up for about 2 hours. I fed and played with her, then put her back in bed to let her fall asleep which she did. It was awesome. I had a little TV screen where I watched about 4 episodes of the Office and 2 whole movies with no interruption. I was in heaven. Any mother is going to understand me, no kids and no work, no phone just me and a pretty comfy seat (I had the wall in front of me so put up my feet) and my own little TV. That is how I got through the 10 hour flight very quickly. (Almost too quickly, LOL).
Right before we started to land, Annelies woke up (they had opened the little window covers and turned the lights back on) and I repeated the routine from takeoff with a bottle of milk for her, it went beautifully, no crying, no fuss. She is such a trooper!
I will post pics as soon as I can figure out how to load them to my account...

Dec 2, 2009: Happy First Birthday, Annelies!!!

2009-12-06T17:52:00.000-08:00

She is ONE!!!!

Unbelievable that one year has passed since Annelies was born. In some ways it went really fast, in others it feels like we have lived a lifetime. One of Annelies' birthday presents was her 1 year checkup with the pedi. Since we are traveling within a week I asked to move her shots to next visit. That way we can be sure she will not have any residual effects from them.

Her stats are AWESOME: 95th percentile for height, 75th for weight and 25th for head circumference. This on the "typical" charts. Dr H (the pedi) is super impressed with how Annelies is doing. She is cooing a lot and says "Hi" appropriately (like when we say it to her), and is starting to wave. We have not done a lot of signing with her, because we need to lear ourselves, something I am planning to focus on more this upcoming year. She sits up and gets herself from sitting to laying down position easily back and forth. Today she said "Bye" (or at least, it sounded like it to Aaron and I). She is crawling, just needs to figure out that it is faster to crawl then to roll to places she wants to go. She babbles a lot, all syllables, with intonation. She will begin with Eric, the ST who has been working with Marco, in January. (When Marco turns 3 his services will mostly come from the LUSD (School District). So I already put in for Annelies to get that spot with him. I learned, above all, to be aggressive, proactive and organized on behalf of my kids. This has helped me with work too, so that has been a good side effect :)

Enclosed are a couple of pics of Annelies and Marco in bath on the eve of Annelies' B-Day.

Oct 17, 2009: Where Is Her Penis?

2009-10-25T20:22:00.000-07:00

This little gem of a question was asked to me by 5 year old Riley, my friend Jenna's offspring. I loved it. I loved it because it was so simple. To him, what was lacking in my daughter was not a few brain cells, eyes that go to the side and not up, or any kind of 'look'. To him, she was only different because she does not have a penis. Like any girl would be!

Annelies and I stayed with my friend Jenna and her to kiddo's, the aforementioned Riley and 1 1/2 year old Jace. For 3 days, Annelies basked in the glory of being loved and admired by Riley. Annlies took a bath with Riley, Riley fed Annelies her bottle, he tried to get her down a play slide, helped her play on a toy horse, and told her every 15 minutes that she is beautiful. Jace took it all in stride, but you could kind of tell at times he was thinking: Hey, waitaminutehere, I was the baby...what happpened?!?!

Riley spent the last night we were there at his Dad's place. The next day, when he talked to his mommy, he told her to tell Annelies good bye from him, and to tell her she is beautiful and he loves her. And don't forget to tell her she is beautiful! Yes, I admit that my heart kind of stung at times, knowing that when they are 15 years down the road, most likely she will not be getting that kind of admiration from 'typical' boys her age. That is why we enjoy it now, as much as we can. I must also say, though, that when I saw 17 year old Chris with Annelies (when I visited Robin- see previous post) I thought: "Heck, if Annelies meets someone half as sweet and wonderful as Chris, she will be a lucky girl!"

Oct 16, 2009; Past and Future

2009-10-21T17:14:00.000-07:00

Today was a wonderful day. Annelies and I woke up in the Denver area (Aurora to be exact). It was the first full day of our Colorado adventure. Since we did not have any 'dates' until the afternoon, I decided to head North to Greeley, my old College town. We stopped on our way out of town at Starbucks and headed North on I-25. We made it to Greeley by 10 am (I always get up early when I travel, so did Annelies, but she is always early). It was so strange and cool to be back on the campus! We drove around, and I snapped pics on my cellphone to send to Aaron. A lot has changed, a lot of nice new buildings. I loved the campus back then, and it is even nicer now. We parked the car, and took a long walk around Campus. In front of my old dorm, we took a break and I gave Annelies her bottle (see pic). It was so cool to be back. The weather was glorious. It was only today, sitting there looking at Lawrenson Hall in front of me, that I realized how much I appreciate my College days there. It was a rich experience, difficult at times because I funded most of it myself. Stressful sometimes because I worked my way through, and was so often freaked out at the thought about having to support myself afterwards. (Who the heck was going to give me a job??? LOL! Never should have worried about that.) I would not have had it any other way. I sat and reflected and felt good about where I came from. Students there are so nice, I talked with a couple of them. Then I did something I was never able to do during my college time: I spent $200 at the store to buy sweatshirts and T shirts and other gifts. That was awesome!

In the afternoon we headed to Arvada to meet Robin and Teri and their kids. Each of these women has an older son with Ds, and a younger daughter (Robin's daughter Janet is 13, Teri's daughter Suzie is 2). It was great to see Annelies hit it off with Suzie, they played on the floor (Suzie is a quick crawler, but will probably be walking soon). Teri's son Chris held Annelies for a while. Seeing these older kids with Ds was a revelation to me. It showed me how rich Annelies' future has the potential to be. After the visit with Teri, Robin and kids Annelies and I headed to Applebee's to meet Jaime and Makinna (see picture...Annelies giving her Lip Of Discontent to Makinna, LOL). Makinna just turned 10, she is a lovely young girl attending 4th grade in a typical school. She is more like all other 10 yr olds than different. She talks in slang, loves horses, and shoes. She has friends in school who love hanging out with her. Once again, my heart was filled with excitement and hope for Annelies' future.

As I drove home, I reflected back on how this day took me to a piece of my past, and then showed me possibilities for the future.

Oct 10th, 2009: NICU Reunion

2009-10-10T20:29:00.000-07:00

Today we were invited to Sutter Roseville, for a reunion of NICU patients from the past year. The NICU has now been open for a year, and we were absolutely lucky that it opened when it did. I recognized all of the nurses who were crucial to our stay, they were all there (except for one) which was AWESOME. We chatted, I took pictures and they lined up to hold Annelies. So cool. They were genuinely happy to see her, and thrilled that she is thriving. I also saw the people whose little girl shared a room with Annelies; they were born on the same day. I took some pics and have an email address to stay in touch. (I always regretted not getting their information before we left, but that time was such a daze for all of us...).
Annelies passed her 10 month B day, unbelievable how quickly time goes. We are planning a trip to CO next week, to visit my friend Jenna and also someone we met since we started this journey. I am so looking forward to it. Some 'girlfriend' time, I am very much due for that! It will be just Annelies and I, and my first plane trip with a baby. Only 2 hours, so it should be OK. If this goes off without a hitch, we will go to NL this December to visit my family. Since Annelies is still 'portable', it is a good opportunity. I regret I never did this with Marco when he was this little, so now I will take that chance.
We are thrilled the fall has arrived. We are looking forward to visit Apple Hill in november (hopefully with friends who have kids- it is a matter of arranging our schedules), and the SUDS walk at the end of the month. I hope to do some kind of Christmas open house this year. It is also time to think about Christmad cards again!!

Oct 4, 2009; Some Pictures

2009-10-04T16:33:00.000-07:00

Today was such a lovely day, we are finally getting some fall-like weather. I stayed home with the kiddos, took a walk with them, did a bunch of stuff around the house (unpacked more boxes) and took some pictures of them together "posing" for the first time. So much fun.

Oct 3; Just Some Thoughts

2009-10-03T19:35:00.000-07:00

Before I had kids, and was thinking about what it would be like, invariably my mind would wander to the "What Ifs". One of these "What Ifs" happened to be Ds. What is I have a child with Ds. How do parents do it? There is no way I could handle that (I knew nothing about Ds). I also had a hard time believing that parents with a child who had a disability of any kind could possibly love, bond with, and feel proud of that child the way a parent loves a 'typical' child. Little did I know. When Marco was born, one of my first emotions was a feeling of relief. He did not have Ds. I remember looking at Aaron and saying over and over: "He is OK, he is OK". Meaning: "He does not have Ds". I thought that was the key to happiness, my child not having Ds or anything else (the reason I was scared of Ds in particular was my age. It could also have been that I always, deep down -no pun intended!!- have known that this was going to happen, and I always pushed that feeling to the very back of my mind.) Anyway, life with Marco was and is wonderful. Then Annelies came along. And after those first difficult, confusing hours, I learned the best lesson yet. I love my child. First of all; my children are kids before anything else. They happen to have some things going on, and we are getting them the best therapy we can possibly get them. We are learning to be advocates for my kids and we do this with all the love and persistance we can muster. It is the most important job I will ever have, and I am happy to do it. But they are persons. Kids. People. They will eventually be valuable participants in society, like all of us.

Going back to those thought I used to have, I actually felt pity for parents of kids who had disabilities. I now cringe at the idea that someone may feel that way about me. Of all the things that could be the worst (besides anything that directly relates to the health of my kids), the fear that someone might pity me is the worst. Interesting, isn't it? I know there are/will be people who do. And I want to tell them to be happy for me (I mean, how freaking CUTE are they?!?!?!) LOL!!!) Not a day goes by where I don't feel so, so overwhelmingly happy and grateful to have these kids and Aaron in my life.

09/09/09: The Aftermath

2009-09-09T19:12:00.000-07:00

So it has been a week since Marco's diagnosis. We have been on a bit of an emotional roller-coaster. At the same time, life goes on. Kids still need to be cared for and jobs still need to be done, so there is not really a lot of time to mope around. We are not mopers anyway, but I have certainly had moments of feeling sorry for myself. Then there have been the moments of jealousy towards everyone I know who has 'normal' kids. Not in a bad way, so please do not avoid me if you read this and are near me. Nor will I come and steal your kid and leave you mine. LOL. I have been assured that these feelings are normal parts of coping with a tough situation.
One thing I started doing a lot was looking at Marco's behavior and thinking: Is that an Autism thing or is that a Toddler thing? I don't think Marco throws tantrums more than the average toddler, but he does get really impatient with himself. On the way home today, he started playing with his shoelace. He unthreaded it and tried to re-thread it. He was successful. Now, I would consider this an advanced fine motor skill for a 2 1/2 year old! But he will get upset with himself if he does not get it in the first try. (Ohmygod, he kind of sounds like me at work. LOL. Much of my job is trying to figure out things and sometimes I want to cry/scream/curse if I can't. At least, I do tend to get impatient with myself. ) I also started giving him brief commands when I want him to do something. Repeat until he does it. And he totally gets it!
Then, I freaked out because I read somewhere if you have one sibling with Autism, the others have higher risks. ACK. I mean, come on, you say. Annelies has enough to deal with with the Ds! I agree. Yet I have read about instances where kids with Ds ALSO had Autism. So I started drilling Annelies like a mad woman when we were doing her PT excercises this weekend. I made her hand me a toy, and I would hand it back to her, back and forth. And switching hands. And making eye contact. And calling her name to get her to look at me. I bacame drill seargeant Mommy. Annelies finally gave me a look that said: WTH is WRONG with you?!?! So I laid off. (Today in her Wee-play class, the teachers observed how good Annelies was about grabbing a toy from me, though, so we made significant progress. Go us!)
The bottom line is, and this goes for both Aaron and I, we love and enjoy our kids. We appreciate the challenges in front of them, and admire them that much more for being able to tackle those challenges, and overcome obstacles with grace and a sense of humor.
I also want to thank all our friends & family. Once again, your outpooring of support, words of encouragment and faith from near and far has been none less than phenomimal. Thanks, from the bottom of our hearts!

09/02/09: Annelies is 9 Months Old

2009-09-09T18:49:00.000-07:00

Hard to believe that Annelies was born 9 months ago. She is 9 months old, and thriving. She passed the 20 lb mark and is 28 1/2 inches long. These measurements put her in the top 75 percentile of typical growth charts for weight and length. She is able to sit independently for long amounts of time, and can spend some time on her hands and knees with hip support. She is starting to army-crawl a little, but sometimes goes sideways or backwards. Not sure how she does that. She is incredibly talkative, and babbles a lot with influctions/intonations in her speech, really cute. She also laughs out loud. I remember Marco doing exactly the same at that age. She is a little, uh, louder than Marco was though. She is starting to be interested in toys, and reaching a lot for different things we hand to her. Eating is going well (hence, the healthy weight). She eats a lot of fruit and is becoming more familiar with vegatables. I am preparing foods a little more lumpy so she gets used to texture. She is not bothered by this.
I am kind of forgetting what 'typical' milestones are, not really keeping track anymore of what Annelies does and how 'far behind' she is. I know some of the major milestones, like walking of course, but am not so bothered anymore that she will be developing at her own pace. That said, she really really likes to stand up. When she is on my lap of on the floor in front of me, and I grab her hands, she is up on her feet in a flash. So cute. But the biggest factor in standing is trunk control, if she does not have trunk control, she needs to lock her legs to stand up. She is getting much more trunk control since she is sitting up independently now, so she certainly is getting stronger.
It is hard to believe 9 months went so quickly. Soon I have to start thinking about planning a 1 st B-Day party for her!

09/01/09: Here We Go Again...

2009-09-01T17:23:00.000-07:00

So when Annelies was diagnosed with Ds, and I was kind of getting used to the diagnosis, I started to look at things that could be worse than a Ds diagnosis in order to help myself get past that moment. I am sure there is a fancy Psychological term for it. One of the things I said: Well, at least it is not Autism. Because my view of Autism was as bad as the one I had of Ds (I thought all kids with Autism were like Rainman, not able to have any kind of connection, severely cognitively delayed except maybe in one area where they were savants). Well, I get to eat these words today. Today we had an appointment with a Psychologist for Marco, to basically check out of he belonged on the Autism scale. And he does. On the mild side of the spectrum. Marco's indicators for Autism are that he does not share joy with others (I guess it is 'innate' for kids to share joy over a toy or a new thing, they show this my looking at the toy/object, then at the person near them. He does not do that. He shows joy, laughs and smiles, but does not look at us in such moments) and he does not make appropriate eye contact. Physically, he flaps his hands when he is excited (I always thought that was just a cute Marco characteristic) and he used to walk on his toes a lot, now he does it less to almost not. So he is on that cusp.
In the back of my head I know that this is actually something that can be overcome. But I have so many thoughts running through my head..like: so, now I am on that train, too. WTF!?. I mean, really. (and you have to realize this was in the last 12 hours, and I am running a 102 degree fever right now too, so I am rambling). Why us? Aaron and I were not even going to BE parents. We were going to not have kids, and be selfish and do what WE wanted. And...the worst thought is that I am an absolute failure as a procreator. (This is hard, buit those who know me best know that I tend to beat myself up quite often). Now, lest you freak out about me saying this: I would not change my kids for the world. I love them more each day, and that is endless. My pride for them could not be bigger. But I am a bit miffed at whoever thought that we could handle this. But somwhere in there, I know we can.
In a moment of clarity, Aaron said that our kids will balance each other out: Annelies will teach Marco to share joy, and Marco will teach Annelies intellectual stuff she will need to learn to get through life. That was the most beautiful thing I have ever heard him say. I think in the end we will all be stronger. Not feeling so strong right now though. One thing I learned about Autism is that 70% of people who have it are indeed cognitively impaired (the Psychologist said "retarded" but through my Ds connections I have learned that this is not a PC term to use..). Marco's IQ test indicates that his IQ is in the normal range. So we have that at least. He also said we need to 'challenge the diagnosis', which was nice to hear. He is not putting a label on our kid. He feels that there is a big chance that Marco can come in at 5 or 6 years old, and repeat the test and have the diagnosis reversed. He has seen that happen many times in cases similar to ours. He also said we needed to be very demanding parents. We need to do and ask for and get what is best for our kid(s), be it at school, daycare or whatever. The squeeky wheel, he said. Ironically so very different from how I have lived my life. I have always been a "Yes Maam, No Sir" kind of person, not really standing up for myself, not wanting to attract attention to myself. Interesting the lessons life sends our way. Guess I am not meant to be that timid person. (and believe me, since Annelies's birth it is much, much less).
It is kind of funny, because when we had Annelies's diagnosis, it was known that it was 'for life'. She will always have Ds, but she will be able to develop to her best potential simply because she has a lot of support and we are getting her the best of the best or therapy. With this Autism diagnosis, being that it is 'mild', it can be reversed, he can grow out of it, ot can go away (or whatever you want to call it). It is just so weird to have that stereotype blown out of the water. That a kid with Autism can be loving, and huggy, like Marco. That they can have joy and show it, but they need to learn to fully share it. He does look at us at times with a shy smile that is so heartbreakingly cute, maybe because it doesn't happen that often) as if we share a little secret. It is usually when he does something he enjoys, like the swing, or I give him something to eat that he really enjoys, or I praise him for something he just did, which shows me it is obvious he is happy to please others (another thing that did not jive with my preconceived notion of Autism). So here we are. We will be signing up for a "Walk for Autism" AS WELL AS a "Walk for Ds" this fall. LOL. In the meanwhile it is the next day, I began writing this yesterday but needed to share the dx with my oversees family before I put it in my blog. My fever is gone now, still feel weak but recovering.
The bottom line is that I love my kids. Marco is still the same Marco, I love him more every day. We will survive. Right now, the emotions are high, but we will get through (it will help when I feel better).

Aug 28th, 2009: Doing Something For Yourself

2009-08-27T19:42:00.000-07:00

This week, for the first time ever in my life, I got a PEDICURE! It was so cool! I never really did stuff like that for myself because, well, I really don't know why. Maybe did not really think I was worth it or something like that. And I thought I was too busy. But it is a good thing to take time out and let yourself be pampered. We are all busy, but we all have the same amount of time in the day. So it is what we do with our time that matters- how we choose to spend the time. And it is important to take a little time to pamper ourselves now and then! Now, I need to go take care of Marco, who is running a fever. (There is always SOMETHING...LOL)

August 25, 2009: Growing Up So Fast

2009-08-25T20:11:00.000-07:00

Funny how I don't really notice my kids' growth until I take a picture. I kept the camera nearby all weekend and took some pictures of both kids. When I looked at Marco's pictures, I was amazed at how 'un-toddler-like' he looked in them, especially the one where is is wearing the red shirt (which has to be my favorite of his shirts- courtesy of our friends the D'Arcy family). He is just over 2 1/2 now, and becoming more independent. Still not speaking like most kids his age, but he understands everything. Just because he does not speak or answer me back, he can follow directions in both English and Dutch. I learned that I can expect quite a lot from him. He can carry his lunch box to and from the classroom, and his plates and cups to and from the kitchen and dining room, pick up papers and toys that end up on the floor when he is playing (my Mom gave us a rack with colored boxes to store the toys in, he can help pick up and put toys away in that). So that is kind of nice. I give him small tasks, and if it is too much to understand I break the task down (like: 1: pickup item. 2: Carry item down stairs. 3: Put item in laudry hamper.) So I have a little helper who is really proud of himself when I thank him for his help or praise him for listening to me. Very cool. He is also starting to interact more with his sister. She will sit up and smile at him, and he smiles back. It is really cute to watch. This was happening a lot on Sunday. Of course later in the day, she cried for some reason or other, not even hard or anything, but Marco walked right over and whacked her on the head. Where the heck did he learn that??? I reprimanded him sternly for that. She did not even care. He did not whack her hard, really does not have the capacity to yet, but it was kind of a shock to me. I guess it won't be the last time...I mean, they are close in age, there will probably be fights. I do hope that for the most part they will get along. Time will tell...

Aug 19th: Annelies's First Class

2009-08-20T21:45:00.000-07:00

Wednesday the 19th I took Annelies to her first “Wee Play” class. We were the first ones to arrive (I was very eager, even though I know it is only 5 minutes from my home I left myself 15 minutes to spare…). The class is held in a portable building that is occupied by the Placer County Office of Early Infant Education (or something like that). On the floor was a huge mat covered with squishy toys and Boppy pillows, very welcoming stuff for the around 1 year old crowd.
I met a Mom who had her daughter on the same day Annelies was born. (Until now I had only heard from our PT that there was a child out there who was born on the same day, so I was very excited to meet them.) This child is adorable and already sitting completely by herself (Annelies is almost there). It was nice to talk to this Mom, because until now I have shared very little in person with ‘fellow’ mothers of children with Ds. Very nice Mommy, also works full-time, so her mother will be attending with her Daughter. My Mom will also attend with Annelies on some occasions, so she won't be the only grand mom there. The famous Gracie and her Mom were there (I call her “The Famous Gracie” because she is the one I heard about when Annelies was born. She was born at the same hospital, about 2 1/2 months before Annelies. The nurses told me about how they adapted to the Ds Diagnosis (without getting too personal) and they gave me the family’s number but I never called (was not ready). Grace has the same PT as we do, so I received regular updates about her in the past 6 months. It took me this long to actually meet her Mom (I met her at the Convention). Kind of funny how these things go.
About a month ago I felt I was getting to the point where was feeling ready to meet others and share experiences and now I seem to be meeting them without much effort at all. Gracie’s Mom happened to be at the same workshop at the DS Convention (we had, like, 10 to choose from, about 100 people per room, and she sat down in front of me. I looked at hear badge and recognized part of her last name so I asked her if she was who I thought she was after the lecture). I had heard about the little girl born on the same day as my Daughter (odds of which are so small considering on average only about 15-20 children with Ds are born in the US daily) having 2 in one county on the same day is an interesting coincidence. They will be at the same High School, too. I really wanted to meet them and am glad I will now see them on a regular basis. There was also a little boy who just turned 1 yr old (lucky little dude with all the cute girls in his class!), and another little girl who was a little bit younger than Annelies I think.
The class begins with a circle activity that singles out each child for a few moments. Then we learn about an activity we can do with our child (in this case it was baby massage). After that a play activity, where we focused on getting the kiddo’s interested in a toy and having them rotate their trunk while reaching for it. At the end of the class there is another circle activity.
It is amazing and cool to see the different levels of development, and how quickly the kids develop and learn. At some point in the class I realized I did not see a group of kids with Ds or other disabilities, I saw a group of kids learning and having a good time. Annelies fit right in, she was all over the activities. She paid attention when she was addressed in the circle, and did not get overwhelmed once. I came away from this class exhilarated, and happier than I have felt in a long time. Between this class and the Convention a few weeks back, and the experiences I read about on the message board I really feel that there is no limit to what I can expect Annelies to do and learn, and that makes me so, so hopeful and happy!

August 12, 2009: Annelies Goes To Class

2009-08-13T21:18:00.000-07:00

Very cool: Placer County offers a weekly class that is called “Wee Play”. It is facilitated by our PT

, Esther. Initially I thought this was not an option for Annelies since I work and Aaron has an irregular schedule. But I began to think about a way around it, and figured it out. The class is from 9:00 to 10:15. I will work from home early in the morning for a couple of hours, get the kids up, and take Marco to daycare. Then Annelies and I will go to the class. My Mom will meet me after the class to take Annelies, and I will go to work.
There are about 6 kids in the class, about Annelies’ age (she will probably be the youngest there). It will be a great way to meet other parents and for Annelies to have some social time around other kids. I am so excited about thi

s, as I was driving yesterday I found myself planning what outfit Annelies will wear to her first class on Wednesday.

Aug 7-9, 2009: A Nice Weekend

2009-08-13T21:15:00.000-07:00

A Few highlights:

1) I was off on Friday, this gave me time to be at Annelies’ PT session, hold 3 horses for the farrier, ride PG and Genie, and have a massage while Aaron picked up Marco from daycare.
2) Saturday I cleaned the house, rode PG, Genie and Diabolo, de-wormed the horses, picked up supplements for myself and the horses and had a short visit with Edgar, swam with Marco (he had his arm bands on for the first time and was able to float in the water, a whole new experience for him), played with Annelies, took a nap in the afternoon.
3) Sunday I rode PG and Diabolo, did grocery shopping, cleaned house, started the laundry, had a little time to myself in the evening after Marco went to bed, had a great night sleep (this has been hard lately, so it is worth a mention when I do get it).

Health-wise I feel a lot better now that I have been taking vitamin D and Iron (among other supplements. I have more energy. I am also talking more time to workout (I use the gym at work). I lost 20+ lbs so far, have a long way to go but feel a lot better.

August 1, 2009: Down Syndrome Convention in Sacramento

2009-08-11T19:35:00.000-07:00

1) We saw a couple who are planning their wedding. This was a very hopeful experience. They had lunch in the deli we ate at on the first day, they were holding hands and having their lunch. It was neat to see a couple in love, that they have Ds was secondary.
2) There were too many workshops to choose from, so we decided to divide and conquer in some cases where I went to one and Aaron went to another. That way we learned about Special Needs Trusts, Cognitive Development and disciplining an child (this was useful for both kids), How to still take time & communicate as a couple (we did that one together), Brain development and different studies that are being held at UC Davis (because it is so close, Annelies will be part of the research).
3) I met a Mom who had her daughter Gracie 2 months before I did at the same hospital. She and I will be taking the girls back to the NICU to visit the nurses who were so helpful during our stay there. It will be nice to get together with her and talk over our experiences, and get the girls together for playdates.
4) Aaron met a nice Dad (I met him & his wife later on) from Rocklin, with a 17 month old son. We will be inviting this family over to our house for dinner and also sharing of experiences. This way we are now starting to build up a network of support.
5) We found that we have it so easy compared to many parents whose kids have multiple surgeries. It is not unheard of for a child with Ds to have upwards of 30 surgeries! We are grateful for Annelies’ health.
6) It was so nice to have a kid-less weekend! Aaron and I enjoyed Dinner and lunch out in Old Sac, at times we did not even know what to say to each other because we are not used to being alone together. He has been working a lot (trying to get as much as possible overtime to help pay off some bills.) We now know the importance of making an effort to spend some more time together sans kids. My Mom, on the other hand, was pretty beat after 2 days of running after Marco.

July 26, 2009: New House & Kid Updates

2009-07-26T14:29:00.000-07:00

Finally...

I haven't written here since the beginning of June and here is it July already! The biggest change for our family is that we moved into our new house about a month ago. This went without a hitch partially thanks to the help of some of our friends! The new house is almost twice the size of the old house, so all our stuff fit in perfectly with room to spare. There are still boxes in the garage, but I am not thinking about them now. (If I can't see it, it doesn't exist, right?). The funny thing about moving (and I have moved OFTEN), is that when I move in about 2/3 rds of my stuff, I feel pretty much that I have everything I need and I wonder what I need the other 1/3rd for. (That is the stuff still sitting in the garage). At the same time, here we have this fabulous newish house, and I must say, our couch looks quite dated. But we are going to wait until both kids are out of the climbing phase until we get a new couch.

The other night, we hung pictures. That made me feel more at home.

Talking about the kids, they are doing well. Annelies is sitting, she has to hold on to something when she does, though, but she really wants to sit and stand. When I am on the floor with her, and help her sit up, she pops right up onto her feet. Our PT is OK with her doing that, she is actually quite impressed. I am no longer comparing Annelies's progress to what Marco did. I actually kind of forgot what Marco did at her age, and that is better because I will drive myself nuts.

Marco has a weekly speech therapy session, because he has a speech delay. This sounds incredibly serious, but if Marco was never in day care I would not have really been too bothered by it. The daycare urged us to get him some early intervention, and since we already deal with them for Annelies, it was easy to have Marco evaluated. The speech therapist is fabulous. This guy is obviously in his right calling. Have you ever noticed how delightful it is to see someone practice his or her profession when they are obviously in the right one? Well, this guy certainly is, and he has a wonderful report with Marco. I enjoy going there, because Marco makes such progress.

About a month ago, Aaron and I were asked to come to his daycare to talk with the 'powers that be' there and his current teacher. They were concerned because of Marco's speech delay, and the fact that when they asked him to stop doing something (like opening the door) he would hit. Now, he does not hit hard, he would just bring both arms up and then down out of frustration. So, we went to talk to them, and they urged us to get him a psych evaluation. They want to make sure 'nothing else is wrong with him' or something like that, and they seem to think that maybe Marco will get some kind of assitant who can come to the classroom and help them interact with Marco, give pointers and such. (In order to get that, though, you have to have a diagnosis on the Autism spectum, I was told). To satisfy them we called our EI person and she scheduled a psych eval for Marco. Personally, I am more of the school of letting kids develop at their own speed, as long as there is not something seriously wrong. But whatever, it seems like here (in the US), if your kid is not within certain lines of development, we need to do all kinds of things to 'help' them. His speech therapist felt that this is a bit over the top, because he is making good progress (he does not think Marco has Autism). But he said that doing the test would put my mind at ease (I have shared my concerns with him several times, and he has pointed out several times when Marco shows empathy and awareness of others and others' actions and how his actions affect others around him). Since we already have the appointment, and it is hard to get these types of appointments, we will go ahead with it so as not to irritate anyone.

So the other day I came to the school and pointed out that I had not received any additional notices about Marco being aggressive, and asked if it was less. The teacher said: "Yes, it is less, but he still does repetitive behaviors". Whatever that means. So I relayed that to Eric (speech guy) and he rolled his eyes and told me that Marco is 2 1/2, and it is absolutely NORMAL for him to do repetitive behaviors, because that is the way he learns (it is not like he bangs his head on the floor or the wall or anything, or sits in a corner for an hour straight and plays with the same thing over and over). Eric is going to talk to the school one of these days, he told me. (He is switching his schedule around so he will have Friday's free for education and meetings and stuff like that...so he will be able to talk to them on a Friday.)

Next week is the Annual Down Syndrome Convention, happening in Sacramento. We are going on Saturday and Sunday, and it will be interesting. Aside from my Daughter, I have not met anyone with Ds yet, so I may get overwhelmed (I am afraid of getting overwhelmed). But maybe it will be OK.

June 2, 2009: Annelies is 6 months old!

2009-06-08T15:20:00.000-07:00

The little girl had her 1/2 Birthday a week ago! She went to the Pediatrician for the 6 month well-baby check-up, who is very happy with how things are going. Annelies is at this time very tall, in the 90 percentile on 'typical' charts. I hope she keeps growing as much as possible. (Hidden behind this comment is the hope that Annelies will be as tall as she can possibly be...people with Down Syndrome tend not to get too tall...so maybe I sound vain here. Not sure how to express it, but I think every parent wants their kid to be 'normal' and even though she has DS, I still want 'as normal as possible'. I have no doubt that over time I will come to accept everything for what it is, that 'normal' for us will be not normal for others. It is what it is. I obviously love Annelies in her own right, so no one needs to worry about that...) . And despite all the rolls she has (cuddly), she is in the 50% for weight. Love me them rolls though, they are so freaking cute!

Anyway, Annelies is really strong which helps her with her PT (weekly appointment, and then we work with her, too). She really wants to sit up, especially when there are people around her having conversations. She wants to be part of things. So at her latest PT appointment, we worked on sitting in a box (it is kind of cool that just plain things you find around the house double not only as toys but also as therapy aides.) Some pictures below. Our cat Rusty is not so happy that we stole his box, though...

She is rolling over from back to stomach and lays on her side too (this is good because it brings her arms together in front of her body...). She makes all kinds of sounds, and laughs frequently. She is very charming, has a very outgoing personality and warms up to people and situations quickly. But she is also sceptical, when something new happens, you can kind of see her think it over. Like when a new excercise is introduced. The way she looks at you kind of quisically like: You sure about this? That makes me happy; I want her to question and test things and situations, not just go along with them 'cause someone says so.
Personally, I am doing OK. I went to a naturalist Doctor, because now that my child bearing time is over, I have to lose weight. A lot of it. This Doctor is very nice, and tested my blood for things I might be short of. I am iron and vitamin D deficient. So I am taking those along with other vitamins, and have radically changed my eating to a basically Vegan way of eating for the time being (I say for the time being here but I know that there is no way you can ever sustain weight loss by going back to an old way of eating. It is just that, after a certain amount of time I will be able to add back some other foods but the way I now eat will remain the baseline of how I will eat in the future.)

It works out for me as long as I plan ahead of time. I find myself bringing LOTS of food to work (due to all the layoffs on my floor, the refrigerator is practically empty, so I can store a couple of day's worth of food there) and eating often but light types of food (lots of spinach, whole grain stuff, fruit and beans). The Doc also sent me to the gym, which I started a little too zestfully because right now my right arm hurts like hell (I pulled a muscle). I did not sleep at all last night, and it was so paindful that I called in to work this am to stay home. I am taking 800 mg of Ibuprifin (presription) and that helps a little. Good god, I did not know a muscle could hurt this much. Childbirth was less painful (and it took a lot less time). Well, I will go back to work tomorrow because I don't want to miss too much (busy time right now, new system that will be implemented this fall. Finally; we have been working on it for > 4 years!). The drugs should help (Not that new sytem, but my arm pain. LOL.)

I will have to take it easier in the gym, will just do the cardio for a couple of days (probably not tomorrow, if my arm is still really sore it is so painful to get dressed!) OK, enough about my pesonal stuff :) This is a long post! Thanks for hanging in there with me. I am adding some pics of Annelies I just love, some in her chair and some in her box (Rusty's box).

5/31/09 Just Pictures

2009-05-31T12:02:00.000-07:00

Annelies 5 1/2 months old (May 2009)

Marco about 5 1/2 months old (July 2007- picture taken by Liselot)

I am a cheapskate; therefore my childern will be sharing outfits (not to mention toys and such) at times. This outfit is so cute, it was given to Marco 2 years ago by our friends Bryan and Shannan, they bought it at the Margaritaville store (yeah, I am sure it wasn't cheap). I loved it, and saved it for Annelies, and she fits it now too.

It is so cool to have 2 kids and experience several things twice. These pictures were taken right around the 6 month mark for each child, and at this time, Annelies is still keeping up with her big Brother where it comes to skills (we notice some delay, that is to be expected and not freaked out about).

Funny enough, on pictures you 'see' the DS more than when you look at Annelies in person. Even though I notice it less, and my Daughter more (does that make sense?). This is a good thing because as she grows it will become more obvious. I dread the time that will come where Annelies will be recognized for her DS and not for herself. I know it will bother me more than it will bother her. I also know that there will be the important people in our lives (and the occasional stranger) to whom it won't matter, who will see and treat her as a whole person.

I think the one thing my kids have in common are the fact that they have infectious smiles that light up their whole faces.

May 9th: First Emergency Room Visit

2009-05-17T07:56:00.000-07:00

Well, after being a Mom for over 2 years, I think I am lucky to have been spared ER visits so far, expecially because Marco is so boisterous. This streak ended last weekend. First off: Can anyone tell me why in the world fevers get the highest on Saturday or Sunday night, when even the Med 7 centers are not open, neccesitating a visit to the ER?
Annelies had a fever that began on Saturday and rapidly became worse. Somewhere in the late afternoon she stopped showing an interest in food, and by the evening the fever felt so high to me that I thought we really needed to go. Mothers intuition. Aaron even said that it would take another 24 hours for her to become dehydrated, but why wait? Once someone is dehydrated it is harder to hydrate, and they need an IV for sure. Besides, I did not know what amounts of OTC drugs would be OK for her and really wanted her to be looked at by a Doctor. She was also crying constantly, which shows me that she REALLY needed help since she rarely cries. So Mom and Leif came to stay with Marco (we popped "Slumdog Millionaire" in the DVD player for them) and off we went to the ER.
Luckily, we got there in time for the Saturday Night Rush. We were seen almost immediately. In the waiting room we saw a couple with a 4 day old (!!), they were really worried, and the Mom was still so post-partum- emotional, I felt horrible for them and hope their baby is OK!!
Annelies got her chest X rayed, and they gave us a diagnosis of beginning Pneumonia. She got an injection of Antibiotics and a prescription of the Antibiotic Du Jour, Zithromyecin (forgive the spelling if wrong). We were also insructed to keep her fever down by switching between Tylenol and Motrin, (one every 4 hours) which worked beautifully (I am glad to know this for the next time for either one of the kiddo's).
It is a week later now, and Annelies is doing a lot better. Her cough is getting better. She is such a little trooper.

May 2, 2009: Solids and Snow

2009-05-02T17:01:00.000-07:00

It has been a while since I added an entry to this blog. Not even sure if anyone reads it, but hey, maybe the kids will enjoy it when they are a little bit bigger.

Annelies was introduced to solid food a week ago. Esther, the EI lady who comes once a week to work with us, told us it is time. So, out came the rice cereal and teh tiniest spoon we have in the house. I mixed a tablespoon with some formula and sat down with Annelies in her 'eating chair', and it went really well! She made smacking sounds with her mouth and sucked on the spoon, it was an interesting new sensation for her and she obviously enjoyed it! I was relieved that she took to it so well. She smiled at me a couple of times during the meal.

Now that she has been eating rice cereal 2 times a day for a week, I added a tiny bnit of banana to it today, she seemed to like that also. I did decide to give her her solid mealk separately from a bottle though, that allows her to digest the solid for a bit before adding a bunch of formula and possibly making her throw up (like she did this morning).

Last weekend, we took Marco to see his first snow. It was a Sunday, we had nothing else to do, and we decided to take a drive up to Lake Tahoe before all the snow leaves for the summer. There was still some on the ground in patches. Marco enjoyed going from the dirt to the snow, the snow was crunchy under his feet and the dirt was like what he was used to. He fell in the snow a few times and realized it is very cold on his hands (it was a relatively warm day, so we did not have gloves for him because we did not spend a particularly long time in the snow.)

I am glad we went up there to introduce Marco to the snow, next year we will take a sleigh and let him ride it, he will enjoy that for sure!

April 4th: Room #4

2009-04-05T19:48:00.000-07:00

If I had to describe the moments and days following Marco's birth in one word, it would be "Idyllic". I fondly remember the first moments holding him, knowing he was 'OK' (during his pregnancy I was particularly worried about birth defects, or anything being wrong), feeling the pride of having given birth, and the elation of having done so 'successfully', and the gratefulness of the beautiful little guy we were given. I spent the first 31 hours of Marco's life in room #4 (my lucky number), where friends and family visited us to admire Marco for the first time. I am sure all of you who had a 'typical' birth experience felt exactly the same way.
So when I had Annelies, it was a little different. That first 24 hours, I would not want to re-live, yet I would not want to erase it from my memory and experiences because it is such an important part of what and who we have become. I was kept in the hospital for 48 hours, because Annelies was in the NICU. Maybe it is standard to keep a Mom who gives birth to a 'non-typical' child, especially when it is a 'surprise', a little longer if possible (I have fantastic insurance) because they might have wanted to keep an eye on me. I am not sure, I do know that given the easy birth (I described it before so won't go into detail) I could have walked out of the hospital that day, and probably would have if Annelies was OK. Once I was discharged from the hospital and Annelies was still in the NICU, I went there about 4 times a day to spend time with her. To get to her room, I had to walk past room number 4. The first time I realized where I was, and I saw that room, I went inside. It was empty. I cried and cried for the grief and sense of loss and scaredness I felt. I don't think I ever cried that hard. The floor was pretty empty, so on one saw me thank god. I think I felt I lost my innocence in a way. It was so hard to believe that the woman I was that day was the same one who had recovered in that room after having had Marco just shy of 2 years ago. It is hard to describe. That first 2 days, I had to choke back tears every time I passed that room. (Of course I was also extra emotional because of a lack of sleep.) I kept thinking, feeling, that I had lost something. But then, this dawned on me: My memories of room #4 with Marco are still mine. They are happy memories that I am grateful to have, and be able to have forever. No one, and no event can take them away from me as long as I am mentally fit and able to remember them. I have all the right to feel them, and to enjoy them, and will do so for the rest of my life. I began to get back that happy feeling walking past room #4, and by the end of Annelies' first week of life, I was even more grateful for the Marco memory because I had that wonderful experience.
Now, 4 months later, I am grateful for the experience with Annelies also. Her existence in our lives is nothing short of a miracle, I would never change that. Yes, I still have some difficulties sometimes. Any big life event like that takes away your innocence/naivete in a way. I sometimes go back to moments or events that happened before I had Annelies, and think "Wow, that happened Before I Knew. Especially at work, now that I am back, there are some things I have to work on that I was working on Before. But it does not have to take away from memories that came before it. I am so glad I realized that.

March 30, 2009: Marco and Rusty and the Water

2009-04-01T19:23:00.000-07:00

Marco really likes water. He would probably eat his dinner in bath if we let him. He can hang over the sink for an hour and play with the water coming out of the faucet if we let him. When I do let him play, Rusty the cat is there immediately because, even though he gets fresh water, there seems to be nothing quite like being able to drink it from the faucet when it is running. It must be a cat thing...

Last weekend I took some pictures of them in our hallway bathroom in the mirror. I think they came out cute!

March 25th, 2008: Milestones

2009-03-29T21:06:00.000-07:00

Annelies had her 4 month well-baby checkup today. I always anticipate these checkups because I am excited to find out her weight and height, to see how she is growing. I did this with Marco also. Since Annelies has been a lot more interactive (smiling, making faces back at us, following us around the room with her eyes and head- especially Marco-), I felt pretty good about her progress. Our Doctor is always glad to see us, she has a warm spot for Annelies. That is a good feeling also. Annelies was not so thrilled about being undressed to get on the scale. Just like most women, I guess. Who wants to get on the scale? She had just eaten, so her weight was a bit inflated but the scale kept flipping between 13 lbs and 12. 15 1/5, so we settled on the 12 lb, 15.5 oz (since she had just finished drinking about 4 oz). Her length is 24 1/2 inches. That puts her at 50% for her weight and 75% for her lenght on the regular charts! This is great news, we are thrilled she is growing so well. She is getting ready for some solid foods soon (some applesauce and sweet potato like we did for Marco).

Annelies is developing really well. The PT comes every week, and is thrilled with her progress. She has almost complete neck control, and wants to roll over but is not there yet. So physically she is starting to show some delays, but is still within normal range. I am beginning to learn what's normal for her, and will be comparing her to herself rather than to other children, or god forbid, milestones in books. I did that with Marco and drove myself insane. I am learning that it is so important to enjoy the moments with her (and with Marco, who is taking his sweet time learning to speak, and that is OK). I guess sometimes in this society we want to compare and we want to come out ahead or even, not 'behind'. Well, it is all about perception, isn't it? Annelies will not be behind where it comes to being loved and nurtured, and trying her best to be who she can be. I think that is what counts.

The PT gives us gets excercices to do with Annelies, which tires her out quite a bit (Aaron is really good about doing them with her, so is my Mom. I do them mostly while we are playing, especially during the week since I am not around as much). She lifts her legs up all the time when she lays on her back (see enclosed pic). She is also starting to hold onto her bottle herself. The PT loves this. Most of it sounds like regular baby stuff, and it is, which is SO COOL. She has incredible try in her, she loves to lay on my stomach and lift up her head and smile (she has been smiling a lot, too). She makes all kinds of sounds now. The other really cool thing is that the Doctor is sure that Annelies will (be able to) speak normally. Her palate is shaped normally, and her tongue also. I am sure we will get speech tharapy, but I am very positive about her future.

March 22: Playing Together...Sort Of ;)

2009-03-22T21:15:00.000-07:00

Today was the first time Marco and Annelies really kind of interracted. It was cute and surprising to see. Annelies was in her gym thingy (where she has things above her head that she can grab), and Marco was sitting near her head with his piano toy (a somewhat irritating toy that has 5 buttons that play popular tunes, and piano keys -Do to Do, 8 keys- he could actually play a song on if I tought it to him. I am teaching myself so I can teach him). Anyway, Marco hits the popular tunes and then the other keys randomly (we put tape over the speaker so it is not nearly as loud as it used to be). The thing was right near Annelies' head, and she was looking up to Marco (she tracks him always, which is really cool). So she started making noises, just regular baby noises, trying out her vocal cords. Then Marco would imitate her and laugh his little but off. It was so cute. It is neat to see Marco starting to kind of 'play' with her, for as much as that is possible at her age anyway. I took the attached pic on my cell phone to send to Aaron.

March 17th, Back to Work

2009-03-21T09:47:00.000-07:00

Back to Work

This week, I went back to work after 4 ½ months of Maternity Leave. This return back was conflicted: I was not thrilled to lose my freedom and go back to the daily grind. What makes it worse is that 60% (!) of my Department has been laid-off or will be by April 17. So, I feel guilty for not really feeling like going back because I should be happy I have a job. Which I am, for as long as it lasts. But I have worked hard and long to establish myself in this job (many of the positions leaving to India are operations type positions) and I am in a project-oriented position, so I am a little safer although no one is safe at this moment. Anyway, this in combination of facing people who now may or may not know about Annelies and who may or may not know how to approach me, or might feel awkward- a feeling I can pick up on immediately- made me a little leary. So far, things have been fine. It has been so nice to see people whom I have not seen for a while. I am still not used to the empty cubicles, especially of those I had a connection with.
An interesting thing happened: I went to the cafeteria and saw a girl who works there who had her daughter right around the time I had Marco (2 years ago). When she and I chatted about our babies when we both came back from maternity leave back then, she had shared that there were some medical concerns for her daughter, including a heart issue for which she needed surgery. So, I ran into her one morning this week and she asked how I was doing and how the new baby is. I told her Annelies was well, healthy, and then told her that she has Down syndrome. This was interesting; I made a split second decision to share this with her, based on a gut feeling that told me it was OK to do so. (Funny how I can pretty quickly seize up a person and just know what/how much to tell them to diminish the impact somehow. )
She told me her daughter has Trisomy8. This means her daughter has 3 of the 8th chromosome replicated to a number (not all) of the cells in her body. So we chatted a little bit until she had to go make a coffee for someone else. [Anyone living with T8 has a mosaic situation (the 3 8th chromosomes are in a group of cells on the body, not all cells. This allows for a large difference in issues someone with this condition has from not visible or not even diagnosed to very serious issues similar to serious health issues found in some who have Ds health and mental-wise.) It is nice to talk to someone who instantly understands, and I could tell the feeling was mutual for her. I want to talk to her more. I also had a nice talk with a colleague who has an older Brother with Ds. Support is everywhere, even in the workplace!
It is also interesting to find things in common with those who have become parents thru adoption. I know 2 women who have done so, and 2 men who are about to. A lot of the feelings they have described to me (not knowing fully what to expect for their child as they do not know the parents, that history. Or the difference because their child does not look like them.) It is funny how our kids, no matter where they come from or how they are created, bring us together in ways we never dreamed but would never change.

March 11: Panera

2009-03-11T21:49:00.000-07:00

Aaron and I went to lunch today, while it is still possible for me to be out on a weekday during the day. I go back to work next week. We went to Panera because Aaron has not been there before. I was introduced to Panera during one of my trips to STP, Florida. The hotel I usually stay in has a Panera right in the parking lot. While the hotel offers a decent breakfast buffet every morning, the coffee leaves a lot to be desired, so I trek across the parking lot to Panera for 'real' coffee. I realized at some point that Panera offers a nice menu so decided to take Aaron there. We ordered and found a table. It was lunch time, so the place was packed. The table next to us had 3 women at it, 2 with babies and one about to have a baby. The first thought that ran through my head was: Good for them, they have 'normal' babies. This was not a malicious thought, it was just an involuntary thought. Immediatly I looked at the car seat at my feet from which my Daughter was grinning up at me. As if she was saying: It's Okay. It is all good....It will all be all right. I felt like a bad mom. Guilty. I shared my feelings with Aaron. He listens to me, that is a comfort. He somewhat understands, but does not get himself hung up on thoughts the way I do.
Part of my overreaction at that particular point was due to yet another whole group being eliminated from my department at work. All their jobs are going to India. It is irritating to me, I do not see how this helps our economy. I have no doubt that this was the plan all along anyway, but now with the economy as an excuse, there is reason to do it quicker. I feel bad for those to whom this is a blindside, and for whom that job was the only one in the household. I wish all these people well. I will miss many of them (after almost 9 years of seeing these faces, interacting and working with these people, it is really hard to see most of them go). So I am in a bit of a cynical mood these days anyway.
I understand now that I am still in a bit of a mourning/grieving stage that I have mostly suppressed by keeping busy. Solving problems, getting things arranged and done. I was told at one point that it is good to be practical, but it is important to give myself time for grief when I need it. And not to get too impatient with myself. I guess today, I had a moment like that. Life is interesting. There is much to learn about it and ourselves, and we do this via others. At 3 months old, Annelies is a pretty good teacher. I think she understands more than most will ever realize.

March 2: Annelies is 3 Months Old!

2009-03-03T22:20:00.000-08:00

Annelies is 3 months old today. 1/4 of a year. It feels like yesterday- the day she was born. It also feels like I have lived a lifetime. So many emotions and changes, so many adjustments and so many things that turned out so much better, so much more hopeful, than I dared hope on the day she was born. Yes, I still have difficult moments. But I have so much hope and also -recently- confidence for her future. I remember thinking that first day (among so many other morbid, sarcastic thoughts that raced through my head) "Well, we won't have to save for College for this one..." Yet, on our last visit to the Pediatrician she told me about one of her patients, 20 years old who has ds, who goes to College. Guess it is time to open that 529! (For once, procrastination paid off for Marco, since I still have not yet opened his 529. With the Dow below 7K, it is a good time to get into the market!)

Feb 15th: Airport

2009-03-01T20:21:00.000-08:00

I like going to the airport. The best occasion for an airport visit is when I go on vacation somewhere, the second best is when I get to go pick up someone. Since we started having kids, the only times I have been to the airport has been to either go on business trips to St Pete, Florida or to pick up family members arriving from NL. (Since this thought went through my head the other day I realized it is time for Aaron and I to go on a trip together, we are planning to do so this fall. More on that in another post).
What I love is that at the airport you see people who were possibly on the other side of the world just 12 hours ago. You see airplanes at the hangar next to one another, one bound for Asia and the one next to it for Europe. People are generally going or coming back from an exciting vacation, or they are visiting California for the first time. There are also those who are in the US for the very first time, to live here. I kind of know how they feel...
Feb 15th finds me at SFO waiting for my Dad and Kathleen. My Dad has been in the US 3 times in the past 2 years. A lot for him! He was here in September with Rogier, and now to meet Annelies, his second grandchild. We take the same flight to 'commute' between Amsterdam to SFO. KL 605/KL 606. Too excited to sleep the night before, I checked to make sure the flight had taken off and was expected to arrive on time. I leave the house at 11, to be at SFO and have the car parked around 1:15. The International Terminal was remodeled a few years back. As I walk from the garage to the terminal I think back over the past 20 years, and how many times I have been to that airport. Too many to count. That is part of being an immigrant, I guess (well, not all people who move here go back as often as I do, probably, or have friends/family come out so often.)
Standing at Gate A (there is A and G, not fully sure what the logic is behind those letter choices, but I am sure there is one...) I look up to see the monitor. Cool new addition- they have monitors that allow you to see the passengers before they even get to the gate. The flight status monitor indicats that the passengers are in customs. Having just had a child, my emotions are a little bit out of whack, and standing next to people reuniting with friends and family members they have not seen for a while, or never seen in cases where grandparents get to meet their small grandchildren for the first time, makes me tear up a little. From happiness of course. The first sign that the reunion is getting closer is the KLM crew. They wear such recognizable outfits. I almost want to thank the pilot for bringing me my family safely (hey, this sounds corny but there have been 2 airplane crashes and that one landing in the Hudson in the past few weeks...). Then come the yellow bags. When you buy something at Schiphol, you get a yellow bag for your purchases. That bag says on it "See, Buy, Fly". It has been that way from the beginning (the 80's). When I start seeing passengers with those bags, I know it is any moment before they are here. My nervousness kind of peaks a little. Will we be OK right away, will there be awkwardnesses? Especially now, with Annelies in our picture. This does not last very long because when they arrive, it is like we just saw each other. It seems to me that when any of my family arrive, we are able to pick up the thread where we left off during our last conversation. I think that is a skill we all learned from living on opposite sides of the world (OK, NL is about 1/3rd across if you want to get technical). The 2 weeks they spend with us go by so fast, as usual. But they give us an opportunity to talk, understand each other even a little better, catch up, and create more lasting memories until the next time one or a couple of us travel across the pond (If you want to get technical again, when you fly to NL you travel across Canada, Greenland, the Greenland Sea,Iceland, the UK and the North Sea.) :)

Feb 7th: Marco and the Grapes

2009-02-07T20:34:00.000-08:00

Marco Loves (with Capital L) grapes. To such a point that he was able to hunt down the container I had sitting on the counter (had not put it back in the fridge yet), and somehow get it to the floor (the counter is still higher than Marco, so for him to get it on the ground without dropping it was surprising). I was feeding Annelies, and usually can hear what Marco is up to (yeah, another one of those skills that seems to be born when the second child is: the skill to hear what child #1 is up to.) I was listening to him but did not hear familiar sounds, so I had to take a peek. Then I had to get my camera, because he was just so involved trying to get the grapes off the bunch. So cute. I guess if he is going to sneak tasty foods, it is good that they are somewheat healthy as well, right?

Jan 30th, Feb 6th: Intake Meeting with Placer County- First PT Experience

2009-02-07T19:50:00.000-08:00

Jan 30th:

The purpose for Annelies's intake meeting was for the coordinator to assess our needs, answer any questions/concerns we might have, and let us know what the county offers for Early Intervention. EI is needed to give Annelies the 'tools' she needs to develop to her best potential. These services are provided and paid for by the county. We had no idea of course as to what is available. Since I still have the 'deer in the headlight' feeling at times (I am not going to lie about it, I keep myself very composed when I meet with people, but there are times I still have difficulties) I hadn't completely figured out what needed to be done in the long run for Annelies. What was so nice about the meeting was that they came to us and explained everything, and gave us a binder with information about resources available to us.

We met Esther, a very nice lady who will be part of our lives for the next 3 years (at age 3, the school district takes over for special needs). Esther is a Child Development Specialist, she will be working with Annelies and us on PT, OT and ST type things (Physical, Occupational and Speech). What strikes me, by the way, is that every single person we have met on this journey who works in this type of field absolutely LOVES what they do. Having someone like that come into your home and work with your kid is such a positive experience. Esther will also come to the daycare as well as my Mom's house, both places where Annelies will be spending some of her time when I go back to work.

Feb 6th:

Our first PT with Esther. Esther spent some time holding Annelies, and getting an idea as to where she is with her body. She observed her on her tummy on a small Boppy pillow, lifting her head, and was impressed that she had decent comtrol, and did it for such a long time. She worked with Annelies to get her to come up into a sitting position with her arms and hands towards her 'midline', and her head steady. Annelies did really well, but when she was done, she was DONE. Annelies tries very hard, but when she is done, she will absolutely let us (and preferably the neighbors) know. I am happy about that, she works hard but is most certainly her own person. As a fun break, she got to be in a swing (see picture) made of lycra. The lycra is nice and stretchy and gathers her body together (does not allow her limbs to fall to the side so much - even though she has decent limb control-). See, now this is a good use for lycra. Wearing it around our thighs when excercising is NOT. It was so cute to see her in the swing, looking up at us as if to say: Whaddareya doing? She looked really comfy in there though.

Jan 27th: 2 month checkup for Annelies, 2 year for Marco & some random thoughts

2009-01-28T21:35:00.000-08:00

Today we had 2 Pediatrician appts: 2 month well-baby for Annelies and 2 year well-child for Marco. We decided to take one child at a time, and leave the other one with my Mom. We wanted both to be there for both appts, and be able to give it our full attention. This resulted in a lot of back & forth driving, but well worth it!

Dr H was happy with both kid's progress. Marco needs to see a specialist for his feet, he kind of walks on the insides of his feet. Really weird, because he has high arches, so no flat feet. He might need some inserts, but does not seem uncomfortable. I guess the 2 year appointment is the last one of the well-child appointments. Next round of shots are not due until 4 year old. So Marco will not see Dr H on a regular basis unless he is sick (let's hope this does not happen often!).

Annelies is still growing and gaining well. She weighs 10 lbs 12 oz and is 22 1/4 inch long. Still towards the high-end of the charts, which is good. Her progress is good. She is becoming really social, making faces (she makes lots of faces) and smiling when you smile at her. She is starting to grab her bottle and has been grabbnig fingers since birth. At this point, she is blessedly sleeping 12 hour nights (has one this the past week). Her meals during the day are a little less often and she drinks more per meal. She drinks about 24-30 oz per day.

Dr Hopper has a 20 year old patient whom she has been seeing since age 12. This girl has Ds also. She currently attends Sierra College. I haer more and more positive stories like that, and it makes me feel good & hopeful.

As a parent it is normal to have hopes, dreams and desires for your child. When you have a baby and you see a child a few years older doing something (for me with Marco, it was seeing a little boy kicking a soccer ball around in the park) you can imagine your child doing that one day, or you doing it with the child. A child offers limitless hopes and dreams for the future to a parent. When that child has a 'disability', things are a bit different. During the first few weeks of Annelies's life, I remember vividly being at Baby's R Us. I saw a 5-ish year old girl with her Daddy. She was riding on his shoulders, laughing. Pretty dark pig tails with ribbons, a tall and lanky girl. I became overwhelmed with emotion because I did not know what to picture for my Daughter. I sometimes still don't. It hurts to think that when she gets a little bigger, and the Ds is more obvious, she might be 'dismissed', people might feel sorry for her/us when they see us. It might be the first thing people see about her. It may not bother Annelies, depending on how cognizant she is. It may not make sense to worry about things that have not happened, but it is the reality of how it is. I have read a lot of things about Ds in my research, a lot of what parents have said, felt, gone through. It is what it is. Most of it is good, though. The 'public' in general is more open, tolerant and educated these days. I know for a fact though, that when I am out with her in public, I will be as proud of her as any parent is of their kid. I have the right to be so. I already am :)

Jan 22nd: Wardrobe Malfunction

2009-01-23T05:04:00.001-08:00

This is how I found Annelies this morning. Since she is starting to grow out of the outfits given to her by Aunt Ericka, she had to resort to wearing a nightgown. They are practical since they have an opening in the bottom for easy access. Well, it appears the opening in the top is practical for her for easy escape. She wiggles her way up while she sleeps, and the nightgown stays in place, thus exposing her shoulders and more if I don't get to her quickly. I laughed so hard when I saw her, and got my camera (god knows what she was thinking). The look she gave me was kind of like: Yeah, this is what happened to me. What are you gonna DO about it? Poor child. LOL.

And to think that Aaron was all concerned about having a daughter, and how she might dress during her teenage years. We can not drive through Loomis (especially around the time school lets out in the spring and summer) without him commenting on the way teenage girls dress these days (where was he in High School, I wonder? I don't think that much has changed...but Oh well). So a week ago or so, when we saw an interesting outfit, I looked at him and said: Well, with Annelies having Ds, this may be an issue you never have to worry about. She may have a different mind set from 'typical' teenagers when she gets to that point. How wrong was I?

Jan 21, 2009: Mixed Feelings

2009-01-21T21:07:00.000-08:00

Today, the company I work for laid off 4% of its workforce, approximately 350 positions. So many mixed emotions there. A large group of my Department was let go. Many people who were let go were really positive about it, they have plans to go back to school and/or stay home with their kids, or have other jobs already. What saddens me is that positions were opened in India in order to cut positions in the US. This makes me mad and sad. The sarcastic part of me thinks maybe in a few years India will be oursourcing to the US. Sad LOL. Many of the positions cut were in IT/Help desk, about 300 (from what I heard).
After working in the same department for over 8 years, you can't help but feel about your co workers as a kind of extended family. You see them every day, they are a part of your life. To have a group of them cut out of your day to day is tough. You are grateful not to be let go but you feel guilty for feeling grateful because you know the people who did get let go. You wonder how these decisions are made. Another sarcastic part of me feels that whoever made these decisions still has a job.
I was close to some of the people let go, specifically one who worked on our floor. She and I went through the baby stuff together when I had Marco and she had her daughter. She is one of the most positive people I know. She is really positive about this whole thing, and will be successful at what she chooses to do next. I will so miss seeing her on a day to day basis though. Good thing there are things such as facebook to keep people connected these days.

Jan 21, 2009: HAPPY BIRTHDAY, MARCO!!!

2009-01-21T07:30:00.001-08:00

Today is Marco's second Birthday! He will be going to school, but only for a short day. Dad is working today, so Marco, Annelies and I will go up to Lincoln to the Grandparents and spend the night. Marco's Birthday will be celebrated on Sunday with friends & family. Attached is a picture taken by Liselot. This picture captures the essence of Marco, basically a very happy little guy.

Have a nice day, everyone!

Jan 20, 2009: Echo Cardiogram

2009-01-20T22:45:00.000-08:00

Today, we had to meet with the Pediatric Cardiologist for a follow-up echocardiogram. I was a little nervous. All babies are born with a 'hole' that seperates the 2 upper chambers of the heart, which allows for blood to be pumped through. This is because in utero, the lungs do not function and the heart does not need to pump blood to them. After birth, the lungs start circulating blood to add oxygen, and this hole closes since it is no longer needed.
The findings were as follows: Annelies still has a small hole between the upper ventricles, called PFO: Patent Foramen Ovale. The Doctor is not worried about this, he is confident it is closing on its own. She also has a heart murmur, which is caused by the openings to the lungs being a little on the small side. This is called Periphery Pulmonary Stenosis (PPS). This is a very routine thing to have happen, not even indicative of Ds, and the Doctor feels confident that this, too, will go away on its own. (Lots of people have heart murmurs, and this is a very common cause). So, everything looks very hopeful. This Doctor was absolutely awesome. When we asked questions, he drew the heart on a piece of paper, and explained it all clearly to us. Often, you kind of get a general explanation, because the Doctor is in a hurry and needs to go on to the next patient. Somtimes the Doctor kind of talks down and gives you a feeling he/she knows so much more and there is no way you will understand so they don't even try. This one took his time and made sure he answered every last question we had. I was impressed. It was a positive experience, and Annelies bahaved like a champ. She is such a good girl :)

Tomorrow, Marco turns 2!! I just finished putting together the treats for him to bring to his class tomorrow. We will have a party for him on Sunday, a lot of people are coming. I am planning this party and also one for my Sister in Law's B Day this Thursday, so this is a week full of party planning and cooking. I am enjoying it so much, and am realizing this is something I am good at! Maybe I missed my calling. Of course, the hospitality indusry is taking a huge hit in this economy so now is not a time for be to become entrepreneurial in this field, LOL.

Aaron and I were at Costo today (shopping for the aforementioned parties) and had lunch there afterwards. We had Annelies with us, and Marco was at my mother's. An elderly lady approached us and told us she absolutely HAD to look at the baby. She was really nice and told us how cute she thought Annelies was. We talked for a while. Afterwards, I turned to Aaron and told him how I kind of almost feel the urge to tell people that the baby they are going gaga over has Down Syndrome. Kind of almost like as if to ask them if they would still feel the same way about her. He understood exactly what I was saying. Personally, I feel that if I were to do this it would not be fair to Annelies. She has the right to have people go crazy over her like any 'normal' baby, right? And not to have to start her life out with a 'label'.
When she gets older, it will probably be obvious to a certain degree that she does have Ds. We will get attention then, I am sure. Most of it will be positive, but I am know there are still people who live in the dark ages and will label her in their minds as 'retarded', and actually feel pity for me and/or Aaron and even Marco.
I don't care for the word 'retarded', it sounds harsh. My most recent reading now has the definition of "cognitive ablilty" and "intellectual disability". I find these terms a little less harsh than "retarded". Funny enough though, I was at the barn today watching a lesson. The girl riding had to try to remember a course and was having a hard time of it. She said she felt so retarded. I was not in the least offended. I am glad about that, I am not too sensitive. I don't want people to feel like they have to walk on eggshells around me.

Down Syndrome- Some Statistics

2009-01-20T22:06:00.000-08:00

Statistics for the US:

Approximately 6000 babies are born with Down Syndrome each year in the US. This is about 16-17 babies per day.
Overal odds are 1 in 700 in overall births for a baby to be born with Ds.
Odds increase with Mothers age but 80% of babies with Ds are born to mothers who are under 35 years old.
Ds is not only caused by the egg, it can also be the sperm, although the chance is less.
Currently there are approximately 340,000 people in the US with Ds.
Survival rate is to about 55 years, but this is an average. I think if you look at Ds babies who are born without a heart issue, this age may be close to the number for non Ds people. Also, open heart surgery on newborns has become 'routine' just in the past 15 years, so I think that initial rate is artificially low.
One I do not like: Chances of Leukaemia are 15-20% greater for a person wioth Ds. Generally it is the kind of Leukaemia toddlers get. While knowing in the back of our heads the realities, we will not live our lives in fear, and not let anything get in the way of our enjoyment with her in our lives.

Statistics for The Netherlands:

One in 650 births, and 80% are born to mothers 35 and younger.
About 35%-40% have heart defects (smaller number than in the US).
1 and a half times as many babies are born with Ds in the Netherlands than 20 years ago.
16 in 10,000 babies are born with Ds.
In 2003, 322 babies with Ds were born in NL. (In 2003, the population in NL was determined to be 16,149,000 by the UN.)

Jan 15th Sandbox for Marco

2009-01-16T08:40:00.000-08:00

Today was a red letter day for Marco. My Mom and Leif got him a SANDBOX. He loved it! He played in it for about an hour, I had to tear him away. When he was done, most of the sand was still in the sandbox! I will let the pictures speak for themselves. Oh, for the Dutch people who are freezing their asses off right now...it was about 20 C here yesterday...Groetjes uit Californie!!! :)

Jan 13-14 Ode to Single Moms

2009-01-16T08:24:00.000-08:00

Aaron had to go back to work this month, after 6 weeks of FMLA. His first shift back was a double, that means he worked 48 hours. Count into that his commute (to San Francisco) and prep/shower time after his shift, that means he is away 2 and a half days. When he is gone, I am a 'fire house widow'. During those long shifts, I get a very small glimpse of how it must be to be a single Mom. It gives me a whole new appreciation for these women, because I know that at the end of the shift, Aaron will come home (OK, well, one hopes, at least. LOL!) I also know I have the emotional support if I need it (he is only a phone call away). I can not imagine having to do it all on your own, every single day, with no spouse to help or at least support you. Wow. That takes a LOT of strength, character and dedication.
On the calendar it does not look like he is gone a lot, he works about 10 shifts a month. Since his shifts are 8 am to 8 am, and he has to drive 2 to 3 hours to get there, that means that I do the morning routine with the kids 20 times a month. This is part of the reason I chose daycare near my work (it is < a mile from work). It allows me to spend the commute with the kids (and use the carpool lane- that saves about 10-20 minutes if I am stupid enough to leave during rush hour). I still have a long time before I have to go back to work, but boy, it will be a huge difference from the days I used to roll out of bed, into the car and to the office with maybe a stop at Starbucks on the way. I came to the conclusion that as long as I am still nursing, with the 2 kiddos, it will take me 2 1/2 hours in the morning from getting out of bed to daycare. Thankfully, there is a brand new Starbucks between daycare and work!

Down Syndrome- What I know about it

2009-01-13T19:22:00.000-08:00

I spent a lot of time reading about Ds in the past 6 weeks (oh, by the way, Annelies is 6 weeks old today). Here is a synopsis of what I know so far (kind of what we learned in Biology, but for me it has been a while).

Ds is also called Trisomy 21 (Tri = 3). The most common type of Ds is called Nondisjunction, approximately 95 % of people with Down Syndrome have this type and I am pretty sure this is the one Annelies has (we will know for sure once we speak with the Geneticist). Nondisjunction Ds is the failure of one of the reproductive cells (can be the sperm or the egg) to separate during meiosis (this is when the cell divides- normally it would divide into 2 sets of 23 chromosomes. In this case, it divides into one set of 22 (dies off) and one set of 24 chromosomes. When it comes together with the other reproductive cell which carries 23 chromosomes, there is a total of 47 chromosomes instead of 46 (the normal amount). The extra chromosome is an additional 21st chromosome, so instead of 2 21 chromosimes, a person with Ds has 3 of them. Because the 21 chromosome is smaller than the others (it is the smallest one) it carries less genetic material than all the others, and T21/ Ds is survivable as opposed to Trisomy 18 which is much less so.
Approximately 4-5% of people with Ds have "Translocation Trisomey 21". In this case, the extra 21 chromosome attaches itself to anothe chromosome, usually 14, which also results in 3 copies of chromosome #21. As in Nondisjunction T 21, approximately 75 % of cases of Translocation are caused 'spontaneously' during fertilization. 25% of cases of Translocation can be inherited from a parent who has a genetic abnormality, called a 'balanced carrier'. This person has no symptoms and would never know they are a balanced carrier until they have this genetically researched.
A picture of a person's chromosomes is called a "Karyotype", we will have a copy of this for Annelies once we see the Geneticist, and I will post it. Much research is still being done as to specifically which genetic information is located on that 21st chromosome, a lot has been found already and helps in determining what people with Ds should be aware of.
Having this extra chromosome affects individuals in different ways, most significantly health wise. I learned that Ds in itself is the least of your worries. Here is the list of health issues we are grateful we don't have to deal with at the moment:

Approximately 50% of people with Ds are born with congenital heart defects, many require surgery in the first 6 months of their lives.

Gastrointestinal problems, partial or total block in the part of the duodenum (just beyond the stomach). Occurance approximately 7 %. Higher occurance of Hirschsprung and Celiac desease. Also possible problems are reflux and constipation, caused by decreased muscle tone. Neither of these are problems for Annelies, and with a healthy diet she should not have constipation issues.

Decreased muscle tone: Depending on how low the muscle tone is, this affects motor development. Much is done to help with Physical Therapy /Early intervention. Annelies has Low-Normal muscle tone, meaning it is low cpmpared to 'regular' babies, but still in the normal range, and on the high end compated to others with Ds. I am so grateful for this.

Higher occurances of Umbilical hernia's, Epilepsy.

One to be aware of is Atlantoaxial Instability: Too much movement between the first and second vertebrea in the neck, 15% occurance rate. This may cause spinal cord damage if not detected and fixed. Annelies will be screened for this around her 3rd B day. If this is a problem, the treatment is surgery. I am hopeful that in the next years, advances will be made for this problem.

Sight and hearing will have to be screened on a regular basis, probably every 6 months. To me, these are things that can be fixed and I am not afraid of them, but it is so important to catch any possible issues with sight and hearing since they would hamper development.

Higher occurance of Leukemia

There are more, but these were the hard hitters for me.

I have been told (and I agree) that this is the best possible time to have a disability. So many advances have been made. Open heart surgeries that were not possible even 15 years ago are now routine.

We plan to live out lives on a day to day basis, without getting too freaked out about what the future holds for Annelies. I see her horizons the same as I see them for Marco, with many opportunities to find out what she enjoys, and build on that. Kids with Ds go to college these days, they play sports, they live on their own, get married, etc. She will have the best of the best of early intervention and therapy to help her on her way, but she will also be expected to live a 'normal' life. When I go back to work, she will attend the same day care Marco goes to, they have already welcomed her with open arms.

There is no reason for me not to be positive and hopeful for our future.

Dec 30: One Month Checkup at the Pediatrician

2009-01-09T08:47:00.000-08:00

Hard to believe it has been a month already! Annelies has been eating well, and growing. We had a good checkup today. The Pediatrician (Dr. Hopper in Roseville) is AWESOME. I am so glad I found her all these years ago, she has been our family Doctor, Marco's Pediatrician and now also for Annelies. She is about my age, so a lot of her training is pretty current. She has experience with Ds, and has high hopes for Annelies. We had a long talk about how even in the last 10-15 years, many things have changed. Kids with Ds are getting better and better guidance and health care, and are growing/thriving better than ever before. The charts that show the averages are just that, it can be normal to be above or below those average numbers.
Annelies was 21 3/4 inches tall and weighed in at 9 lbs 8 oz. These numbers put her in the 80-90 percentile on the 'regular' charts (Dr Hopper is going to keep her on those for now). Her head measured in the 40th percentile (that is significant because kids with Ds can have smaller heads, from the latest numbers I read they tend to be in the 3rd percentile on average. )
Overall, I am not too worried about those percentiles. I almost drove myself crazy keeping track of the numbers with Marco (first child, you want all indicators to be good...etc etc).
Overall, I think it is good to know where you stand and to keep track of the growth but it is good to know what is normal for the child, what are his/her own trends, and if they deviate from that, then you can figure out why that is.
For Annelies' sake, I am glad she is growing and gaining weight. I think it is normal to feel that way about any child, though. It is just that after reading so much about Ds, there can be so many problems, it is nice to see that so far, she is good.
At one month, Annelies holds her head up at a 45 degree angle for a half a minute, while laying on Aaron's chest. She also holds her head up when she is picked up, most of the time. Her muscle tone is very decent (it was described to me as low-normal).

Dec 26th: Back in the Saddle

2009-01-06T00:41:00.000-08:00

I can not remember a time I did not enjoy horses. They are my hobby, and I try to ride as much as I can. I have 2 riding horses, both of whom I trained under saddle. I rode from age 7 to 15, but quit when we moved to the USA. I had to leave my horse behind, and the move was kind of tough on me, so I kind of gave up but never lost the interest and desire to ride again at some point in my life. It was not until I was 30 that I went back to it (earlier in this blog I mentioned someone - my freidn EC- kind of 'dragged' me back into the horse world.)
On this day, it was kind of overcast. I rode my Standardbred mare Genie. She had not been ridden for about a year and a half, because before I became pregnant with Annelies I was too busy to ride 2 horses. I retired Genie from showing (she is 16) and casually trail ride her, and continued to ride my young horse to get him show-ready. I chose to ride Genie that day because I felt more comfortable with the idea of riding her at my Mom and Leif's place, they have some property in Lincoln. Genie gave me kind of a WTF??? look when I started brushing and tacking her up. When I got on, she kind of wanted to jump straight up but I got her going forward and we had a nice ride. It amazes me that you can put a horse away for a lonmg time, then get on and for the most part they still remember all the things they have been taught. I guess there are differences from horse to horse, and this mare just happens to be pretty smart. She was a joy to ride, very responsive. It felt good to be back in the saddle. I rode Genie 4 times before I rode the young horse (PG), he was fun to ride also. It was my goal to get on him new year's eve day, and I did.

Dec 23 Dinner Guests

2009-01-06T00:23:00.000-08:00

Tonight, our friends D & M came over for dinner. D's parents, who live in So Cal, came with them. It was nice to see them again, I met them first in Florida (I met D via work, we worked in the same Department but in different groups. I knew D when he met M, and they moved to No Cal a couple of years back when D took another position with the same company. D's parents moved to So Cal around the same time, so I get to see them from time to time.)
It was nice to see them again, I like having guests over around the Holidays when we have our tree up. They brought dinner from Macaroni Grill, one of my favorite restaurants. Their Chicken Marsala is delicious. At the end of the evening, D shared with me that dinner had been paid for by someone who wished to stay anonymous. This was a very nice surprise to us, and one of the many kindnesses we have received in the past month. So many people have showed so much warmth and support, it is incredible. I will never be able to repay them all, but I will certainly try!
Dec 24th we had my Mom and Leif over for dinner. I made a standing rib roast, which came out beautifully. I have been enjoying cooking & baking since I am not working right now. It is fun to be domestic, I feel like I am "playing house". Once I go back to work cooking will be done less often, and I will freeze more. We have a deep freeze now, it will come in handy!
We celebrated Christmas evening at my Mom's, with Edgar (older Brother) and his wife Susan. This was the first time we took the kids somewhere, and it cracks me up: I have packed lighter to go to Holland then to take 2 kids 30 minutes down the road. I had heard parents complain in the past and really never gave it much thought. Now I am thinking a mini van is not an excessive luxury.

Dec 17...2 Kids in Car Seats

2009-01-03T18:53:00.000-08:00

On Wed Dec 17th, I had to bring Annelies along to pick up Marco from day care. It is about a 30 minute drive from my house to the day care, since I choose daycare close to work. I am the one who will be bringing and picking up mostly because iof Aaron's schedule, so I choose day care close to work. I like the idea of sharing the car drive (I sing or talk to them) and also like the idea of being able to go over there & have lunch with them once in a while.
When I had strapped the kids in their seats and started the car, I felt like the richest woman alive. 2 beautiful kids in my back seat! Who would want more?!
15 minutes into the trip home, they both started crying...Oh well... ;)

Dec 13: Marco is...Happy

2009-01-03T18:45:00.001-08:00

On Dec 13, the day after Liselot left, I asked my Mom to watch Marco. I was sick, and wanted him to have some time with Oma whom he had not visited for a while. When they came home, Marco had learned a new word (so far, he has only said Mama, Dada, Papa, ja (yes) and nee (no). He does understand everything in both Dutch and English, so I was not worried about his speech development. At my Mom's that day, Marco learned to say: Happy!!! (My Mom would say: Marco is...and Marco would say: Happy!!!). So cute. He still does that, sometimes he just says "Happy" over and over. How fitting that was...

Dec 10-12, 2008; My Sister

2009-01-03T18:24:00.000-08:00

Somewhere during my pregnancy, I had the brilliant idea to ask my sister to come & stay with me for a month around the birth of Annelies. A little background: My parents divorced when I was 14, and both of them remarried. My Mom married an American & we (older Brother, Mom and I) moved to the US. Dad found his wife, Kathleen, closer to where I grew up and they had 2 kids, 19 and 17. The 17 year old is my sister, Liselot, who graduated from high school last summer, and now has a year in between before going on to College. She has visited us in the past, and I thought she might enjoy coming out here for another month. I figured it would be good for Marco to have some extra attention around this time, since he is not big on change. It is also good for his Dutch (the kids are being raised bi-lingual).
Liselot was with us from Nov 12- Dec 12. She and Marco got along like a house on fire (may not be the best expression to use for a fire fighter's wife, but oh well). Liselot pretty much gets along with kids anyway, they really like her. She is a pretty popular baby sitter back at home from what I hear.
Little did we know how emotional and interesting and good this stay would be. For a 17 year old, she shows a lot of maturity. Initially, when the Ds diagnosis came, and I was rushing back & forth to the NICU, meeting with doctors and nurses and social workers and pumping, and basically trying to keep things together, I did not really share many of my feelings with her. I think I felt the need to not burden her. I felt bad enough about the whole situation [this was one of my problems- I felt the need to apologize to everyone for putting a (what might be conveived as) less-than-perfect child into the world.] But then I started thinking about how she must feel. Here she was, in a country far away from her home, with me not there a whole lot, and not sharing any information. This lasted only one day or 2, I decided to just go ahead and level with her, talk to her like I would to a good girlfriend. We went to lunch and had a good talk. It was good. We laughed and cried, and both felt good. She was such an awesome support for me throughout the time she was here, it was so nice. We also had good times, we invited friends over a couple of times and she fit right in. Funny, I sometimes forgot she is not even half my age. How cool to have a sister!

Some background and some stuff I left out of earlier posts...

2009-01-02T11:24:00.000-08:00

Happy New Year, Everyone! I hope this will be a good one for all of us.

It was pointed out to me that I left out some vital info about Annelies, mostly because I was so glad that her health is so good...

At birth she weighed 8 lbs. She was born at 40 5/7 weeks of gestation. She was 19 3/4 inches long.

At 4 weeks (on Dec 30), she weighed 9.6 lbs and was 21 3/4 inches long. These stats put her in the 80-90 percentile for baby girls. The Pediatrician suggested we can keep her on the regular charts until her growth changes, then we can use the ones generated especially for people with Ds. I am good with that, I know that she will not be expected to be as tall as I am, but maybe she will be tall for a person with Ds. Even with my son, I checked him on the charts really closely the first year or so, then I started to relax about it. As long as they eat healthy (Marco likes vegetables and fruit) and are active, I don't want to be too freaked out about their growth & weight.

Since I was 37 when I became pregnant, I did the first trimester triple screen. I was well aware of the stats for Ds, because I went through the testing with Marco. (Marco will be 2 on Jan 21st). The triple screen came back with 1 in 470 odds for Ds, and 1 in 7000 for T18. (With Marco they had been similar). Odds at my age alone would be 1 in 130, so I felt really good about the new numbers (they had been similar for Marco). These numbers gave me no reason to do an amnio (besides, I heard that an amnio carries risks with it in itself). The 20 week echo revealed nothing wrong, all the measurements were normal. I had 2 heart echo's also, this is due to a heart issue my Dad has that I disclosed on my medical information. Annelies had no heart problems (At that time I had no idea that heart problems happen to such a large percentage of kids with Ds).
Back in the fall, I was watching election coverage on TV (there was nothing else on) and I remember seeing Sarah Palin with her little guy. I remember wondering how in the world she could be so upbeat and positive, and thought: "If I had a baby with Ds I would NOT be able to handle it". The next thought was (as I looked at my stomach): "What if you DO have a baby with Ds?" Then: " Nah...the tests came back so well...one never gets dealt more in life than one can handle, so I REALLY don't have to worry about it." Now I look back and think that this was some kind of gut feeling. Really weird and interesting.
I guess no matter how you vote, it was nice to see Ds be brought to the mainstream public vision a little bit more, and I hope to see more of it (and will find ways to work on that).
With the tests the way they were, I just know Annelies is meant to be here. Had the test results been squirrely, we would have had such a difficult time, especially because neither Aaron nor I knew a thing about Ds. If I allow myself to think about it, it freaks me out that I might have let myself be swayed towards a decision I could have regretted for the rest of my life. The way she 'squeeked' under the wire with all the tests just shows that she was not only meant to be here, but determined to be here.

Dec 2- 9, in the NICU

2008-12-31T09:16:00.001-08:00

I stayed in the hospital for 2 days. I could have walked out of the hospital right after giving birth, they kept me an extra day because Annelies was going to be in the NICU for an undetermineed amount of time. I think they were observing me and how I was coping with the DS diagnosis. I did not take any pain medication the whole time in the hospital, or after leaving, short of tylenol for headache.
My room was on the second floor, the NICU is on the first floor, past the nursery. Normally, a Mom would stay on the first floor with her baby in the room or in the nursery or a combination thereof. We had this with Marco. On that floor, you run across new moms walking with their babies in a bassinet, and you hear babies crying. I think they put the Moms who have babies in the NICU away from the others, so we don't have to hear babies crying. That thought hit me kind of like a brick. In the beginning all I could see was how different things were this time.
When I was discharged, I had a difficult moment leaving without Annelies. I kept comparing how it had been with Marco, leaving with him 24 hours after he was born. You go into the hospital to give birth and you expect to leave with a baby. But putting it into perspective: By now, I knew Annelies' heart was good. I knew her kidneys and bowels were good. She was breating on her own, and eating well (by now she was getting my milk, I was able to provide 100% of her milk within 4 days). I focused on the things to be thankful for, and this carried me through that moment.
On Dec 6, I woke up and I knew at that moment if someone were to come and offer me to turn back the clock one week, to let me relive it all with a different outcome, I would turn that offer down. This was for me the moment I accepted the situation. I accepted it, but still continued to go through grieving moments of what 'could or might have been'. I learned that the stages of grief to acceptance are not clear-cut. You go through them back and forth. Like a roller coaster, you can not get off until the ride is over. But you get used to it and things sette down in your head.
I was lucky enough to have a talk with a friend who has a daughter with CP. This friend has been a horse friend for quite a while (I got to know her via her Mom, who was a colleague of mine and became my friend during my illustrious HP career in the mid-90's). Now we have something in common besides the horses. It is funny.
Something about "coincidences". I do not believe in coincidence. I believe that people and things happen to us for a reason, like the fact that KD was in a room on my floor and came to talk to me when I needed it. Or that Aaron called his friend- one particular friend out of about 10 close ones he could have called- whose wife came over to the hospital immediately. Or the fact that I have been friends with this person for years who now was able to give me great insight of how it has been for her to have a child in her life who has a disability, how she went through the diagnosis and how her life with her daughter has played out. (And she told me I turned her on to the particular horse-discipline she is now persuing). Or the friend I met at my current work who kept insisting for about 6 months that I take her to my Brothers' breeding farm, which I reluctantly did to get her the heck off my back, and then talked me into taking riding lessons 15 years after my butt last felt the back of a horse, which re-started my horse passion...All these people in life who make things possible, I am grateful for.
Annelies stayed in the NICU for a week, she was discharged at one week old on Tuesday Dec 9th. One day before we left, we were informed she would have to take something called the "car seat test". This test consisted of putting her in the car seat we had for her, hooked up to an oxygen machine for 1 1/2 hour to make sure she could breathe in the car seat. The prospect of this test scared the crap out of me. Not because we would have to buy an expensive car-bed if she did not pass, which could only be used in emergencies like Doctor's appointments (so how was I going to take Marco to day care if Aaron was at work?), but because it would make me feel scared to take home a baby who might have oxygen shortage problems. My fears were ungrounded, she passed that test with 'flying colors' (the exact words used by Chris, the nurse who gave me her results.) I was so relieved, and proud: My daughter had passed yet another test.
A few words about the NICU at Sutter Roseville: What an awesome place. It opened in September, just 2 months before we had to make use of it. What timing. The staff there is fabulous, I felt in such good hands while we were there. They were comforting and nice, and had senses of humor. They helped me so, so much those first couple of days.

Dec 2, 2008: Birthday

2008-12-31T02:43:00.000-08:00

On December 2nd, 2008 my daughter Annelies was born. I can only describe the birth as quite easy, I have had root canals that were more uncomfortable. I went into labor around 11 the evening before. Contractions started about 15 minutes apart, and I was able to read and doze through the night. 3 am, contractions were about 10 mins apart. I was beginning to think that my girl might arrive on Dec 2. This was a good thing because I wanted her to be born on or before Dec 2, as this is the cutoff date for the local school district. Born on Dec 2, you can go to school as an 'early' student, or not, it gives you that option. My daughter has a great sense of humor because this desire of mine to have her born on that particular date is a bit ironic considering she has Down syndrome. For all I knew, she would not BE going to a 'regular' school (this was one of many thoughts going through my head in those first 24 hours after her birth, when I knew nothing about Down syndrome).
At 7 am I decided to take a shower, by now I was beginning to think about going to the hospital and possibly giving birth sometime late morning, early afternoon-ish. During the shower (maybe because I was standing up?) labor sped up quite suddenly, and I thought, "Oh wow, we should really go to the hospital soon, like, maybe NOW." I woke up my Husband, Aaron, at 7:15 and told him to take a shower asap, we needed to go. We left the house at 8:00 am. (My sister, Liselot, was with us, she stayed with Marco.) The hospital is 10 minutes away from our house (I timed this, you see, because when I was in labor with my son, I had 4 contractions on the way to the hospital and they were 2 1/2 minutes apart at the time.)
This was different: 8:00 am on a Tuesday morning: RUSH HOUR. We had to take surface streets. I was not comfortable, and contractions were coming fast. I remember looking at the clock at 8:17 (contraction had just ended) and at 8:19 (contraction started). I almost panicked, but kept telling myself that panick would increase the pain, so I stayed calm. We checked in at 8:30. We bypassed triage, because it was evident I was going to have this baby pretty much immediately. I was 8 cm dilated. I heard the nurse asking for the Doctor quite urgently. A few minutes later again: Is Dr Riley on the way? We need her NOW, this baby is coming NOW!!! At this time I was on my right side in the hospital bed, and I felt 2 things (besides the contractions):
1) Glad we made it to the hospital in time and I was in good hands.
2) This was going so fast, and so well, I felt I had to prepare/brace myself. I am not a negative kind of person at all (such as-something good is happening, this must mean something bad is right around the corner). No, this was a pure gut feeling that I had to mentally prepare myself. I actually felt a sense of dread coming over me slowly. Dr Riley arrived in the nick of time, I was able to push out Annelies at 8:51 am. 21 minutes after arriving at the hospital. (So, I lost approximately 15 lbs - baby 8 lbs + amnio fluid + placenta comes to about that much- in 21 minutes! Take that, Biggest Loser!!
The moment I held Annelies, I knew she had Ds. So did Aaron (we talked about it later- we did not talk much that day because we were each trying to deal with the shock individually). Even though I knew, I tried to deny it to myself. The conflicting feelings that ensued are hard to describe, but after talking to several mothers who went through the same thing, they were all 'normal' feelings. Initially, I did not feel that elation I had felt when Marco was born. I did not feel that immediate bond I felt then. The baby I held in my arms scared the crap out of me. I did not recognize her. The feelings I had scared me even more.
Annelies had great Apgar scores (8 and 9). They observed a heart murmur (they thought) and did observe the Ds features, so they took her to the NICU.
Suddenly I was alone in the delivery room. Dr Riley had moved on to the patients she had to see that day, and the nurses had all left with Annelies, and they had taken Aaron with them. I called my Mom and told her Annelies was here. My Mom told me she would come as soon as possible. I did not say anything about the Ds suspicion (I was still trying to stay in denial). I called Liselot, who said something like: She is here already? You just left the house an hour ago! She then called our Dad & the rest of the family in the Netherlands (NL from here on out).
Then I called my Mom again and asked her if she was on the way. She said she was, and I told her something was probably wrong with Annelies. I told her they were looking at her heart, and that she probably has Ds. I was still alone in that room. I have no idea why in the world they left me all alone.
Mom and Leif arrived 30 minutes later. I was just being taken to my recovery room upstairs. I asked to see Annelies, and they took me to her (They offered me a wheel chair, but I walked. Mind you, I had just given birth, so this was kind of unexpected). She was at that time in the nursery, but they were about to take her to NICU. In the nursery, a very kind nurse came and spoke to us and told us that they had observed some features in Annelies that were in line with DS. She had creases on her hands and there was a space larger than normal between her big toe and little toes. Her muscle tone was low-ish.
Annelies was wheeled to the NICU, where a Doctor approached me and told me the same thing the nurse just had. I asked him if it was possible if baby's could have some of these DS features, but that the test could come back clean. The look in his eyes told me everything I needed to know, that this was not a hope I should cling onto.
I quickly learned that Ds is not the worst diagnosis one can receive; it is the medical issues that can come along with it that are scary. 40-45 % of kids with Ds have congenital heart defects, a large % can have kidney failure or other bowel issues. Many have feeding problems, some have cleft palate or other issues with their mouths. There is more, but I was pretty numb at the time because for me, at that time, the Ds suspicion was the worst. Not knowing a thing about it, it felt like a life sentence to me.
I do not remember what happened immediately after that. I believe I went back upstairs to my room to try to sleep (I had not slept in 36 hours at that point). I don't think I slept. At some point I called a friend (Aaron and I each ended up calling one friend that day). My friend was in shock and so supportive. He said he wanted to come see us that night, I said OK.
At some point in the early afternoon I asked one of the nurses to take me back to NICU to see my baby. At the NICU, the nurse asked me if I wanted to hold her, and I did. This is where the bonding started, tentatively at first. I had been sitting there for a while when CS showed up. CS is the wife of the friend Aaron had called. I have to say this about girl friends: Sometimes they know so much better than you what it is you need. C told me Annelies was perfect. (In my head, a voice kept screaming: No, no, she is NOT perfect. She has DS, can't you see??!!) We talked for hours, I do not remember what we said, but it was so, so comforting. She gave me what I needed that afternoon, I will be forever grateful to her.
Later that afternoon, back in my room, a nurse approached me and told me there was a woman in the room next to mine who has a 3 1/2 year old son with DS who really watned to talk to me, if I wanted. I was glad about this and said I would love to talk to her. (The nurse was really discreet about it, she did not want to force anything on me, and also did not really know how/if I was coping with the situation. I thought this was really cool of her). A few hours or so, KD came to my room. I think I had visitors at the time, but I wanted to talk to her (or, have her talk to me- which is what she did). She told me she knew how I felt (and I knew she did). She had felt exactly the same way. She also had that feeling that she did not recognize her son at first. She also thought her world had stopped. She told me that now, 3 1/2 years later, she would not go back & change a thing (At that time I thought- yeah, OK, that worked out well for you, but it might not work out for me or something along that line). She was so nice to talk with, we have been in touch and will catch up with each other soon (her baby is in NICU because he was born preature, so she has a lot to deal with at this time).
Later on that night some more friends came to visit us, which was comforting. I also held Annelies inside my shirt, and she tried to lift her head. What a trooper. DB kept saying: She is so cool, she is so cool! (And she IS!)
Once all visitors left and I was once again alone in my room, I started pumping (that gave me a way to begin to care for my daughter).
In the middle of the night, I went back to the NICU to hold Annelies. I looked down at her and she opened her eyes. When I looked into her eyes it hit me that I was looking into the eyes of someone who had been there before. Almost like she was telling me that things would be OK, just take her lead- let her show me and things would be OK. I will never, ever forget that moment. At that moment, I was her mother and she was my daughter.