Nov, 2010; Almost 2 Years!!!

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

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!

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

 



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

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

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?

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