Scary Roller Coaster Ride... in Let the Adventures Begin

  • Aug. 9, 2018, 7:59 p.m.
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  • Public

So nothing prepares you for the diagnosis of Down Syndrome, nothing. Its quite a shock, its like you’re on a magic carpet ride and then its pulled out from under you and you’re just free falling, with so many questions and you think you see hopes and dreams of your child going up in flame. My first question that i asked my husband after talking to the doctor was “What did i do wrong?” And his response like it has been every time I’ve asked the same question has been “Nothing”. Its just very daunting to think of all this stuff and just being a week and a day shy of halfway through our pregnancy. But with more resources available and the more we talk and find things out, it seems to get a bit easier every day. I’m sure there will be so many more things to come but for the time being i feel content. I wondered how is my child supposed to breast feed since they tend to have low muscle tone in their little bodies? Come to find out that it is possible and it can help them further in life, such as speech, just like all other babies it helps fight infections and DS babies are more prone to these. Wanting to give our baby every fighting chance that we can do is something that i feel is important. After further research we’ve learned that they are not so different than other kids, just need a bit more TLC sometimes. We were told that he has Trisomy 21 and that it was just a fluke at conception.

Which makes me feel better since we wanted at the most 4 kids, but being 38 can make having a child with DS higher but most are born to women under the age of 35. We haven’t yet decided how many more we will have since he is our first, but with age and having a child with DS it does up your percentages with having another one. I view children as blessings, we are still over the moon that we have him in our lives. Its just a different way that we have to live, to figure it out together.

I just recently read an article from my local Down Syndrome support group by a woman named Emily Perl Kingsley who raised a DS son back when they told her that she just needs to institutionalize them, and the article is called Welcome to Holland. And it just puts everything in a perspective that’s just amazing.

​​I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …

​When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland???” you say. “What do you mean Holland??? I signed up for Italy! I’m supposed to be in Italy .. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt’s. But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away … because the loss of that dream is a very, very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …. about Holland.

Me again…And we don’t want him treated like he’s different, he’s ours first, he’s a boy who just so happens to have DS, i hate how people view it as a something horrible or are you sure, are the tests like 100% true. He’s a blessing! He’s ours! I was afraid with age that i wasn’t able to have kids, because i didn’t seem to be a fertile rabbit in my younger years, blessing in disguise for sure. It makes me angry that people call children and adults with DS the “R” word, stupid and just so many other things that I’ve that i can remember. They are children first of all, capable of learning just like any other child, and just like other things there are spectrum’s of how DS can affect a child. I’ve seen pictures of kids that you wouldn’t believe that they have it and others are more prominent with how they look or talk. it does anger me, after we told family and there were a bunch of we’ll prayer for you. Why? Will you love him any differently than you love your other grandchildren, nieces, nephews? I still worry about how he will be affected. There’s some people that he will never have contact with, like my SIL, who used to be my best friend. I’m just paranoid that she’ll start some BS and then ill have to go psycho on her. I’m afraid that she’ll tell me that i deserve what we get. And what we got was a blessing, he’ll be loved. Every story that I’ve read or heard has the same message, their baby is a blessing and they couldn’t imagine not having him or her in their lives. I did have the thoughts that maybe there was something that we did in our past and this is either a punishment or this is something that we’ve needed in our lives. A woman i worked with had a different thought on it, what if he needed us? I liked that thought a lot, i used to be so much more patient with everyone, but since my concussion last year i’m not and its worrisome. But the things I’ve heard from people over and over again is that we’re going to be awesome parents. I just want to be like how do you know?

Until the next entry…

Last updated August 09, 2018

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