Oct 17, 2009: Where Is Her Penis?

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

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

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

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

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

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

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!