In honor of World Down Syndrome Day, I’ve decided to post in honor of my own special child, Marissa, who’s 13 1/2. I’ve written a bit about her already, but this post is specifically about my fun little kid.
Fourteen years ago, I found out I would be giving birth to a child with Down syndrome. I felt very blessed to know ahead of time that my baby had this extra chromosome. I’m the type of person who likes to be prepared, so it was nice to have half of my pregnancy to learn more about Down’s and just be ready to have a child with a disability. For me, what made it particularly nice was that her birthday was like any other baby’s birth: a day of joy and welcoming, with lots of photos, phone calls, snuggling with the new little one. If we had been surprised by her extra chromosome that day, I am sure a hush would have fallen over the room and there would have been feelings and reactions other than just pure joy and excitement over a new addition.
Marissa was the sweetest, most content baby I’ve had. She was happy to sit in a car seat or bouncy seat and just sleep or lie awake and watch me and smile back at me. She is still a very happy girl, no matter what. She has moments of frustration or anger or sadness, but they’re so fleeting it’s almost as if they never happened.
We’ve been very blessed that Marissa hasn’t had any health problems, no heart surgeries or anything that we’ve had to monitor. Over the years, she’s had a variety of therapies and extra services through early intervention programs and the school system, and she’s done really well. In fact, for a long time I could practically forget there was anything “different” about her. She walked right before she turned 2, and she has always talked fairly well and mostly clearly. She loves to read and does a great job sounding out new words. She just seems unbelievably bright to me and to others.
It’s now that she’s a teenager that I am more often reminded that she isn’t really in the same peer group as kids her age. She’s always been very small for her age, and the older she gets and the taller and more developed everyone around her gets, the more that distinction is pronounced. She is the size of an 8-year-old and behaves much like a 6- or 7-year-old, really. For a long time, she’s been quite happy playing with her younger sister who’s 4 years her junior; now she seems to be just as content to play with our youngest, who’s almost 5.
She was strictly in a regular classroom at school for some years, up until about 4th grade, when it seemed a better strategy to put her in a class with other students who had some learning disabilities of various kinds. She still gets to interact with her peers in p.e. or in art or computer classes now, but she has a better opportunity to have learning tailored to her needs in a special class. And I’m happy with that, mainly because she gets plenty of attention and seems quite happy with her class.
Marissa is eager to help and do nice things for others and she loves to hug. That actually can become a small problem sometimes because she’ll hug anyone, even someone she’s never met, and we have to keep reminding her not to do that.
At this stage of raising her, I’m honestly most concerned with her biological changes; she’s slowly starting to grow into a womanly shape (even though she’s still really tiny height-wise), and that means she’ll soon be experiencing other womanly changes I’m not sure how to address or warn her about as I did with my oldest. It’s all kind of a trial and error situation, raising her, but that can be said for any kid, I suppose!
There are tons of resources available out there now for parents of children with any disability, and there are many wonderful places to find information and support if you have a child with Down syndrome. The difference between what’s out there now and what was available just 14 years ago boggles my mind. The internet was barely around when she was born, with not nearly as much information as it has now, and my city library was where I turned for some information when I had my amniocentesis. I found a book that had a little useful stuff, but I think I was just looking for some photos of cute kids, and then I didn’t really find any. Now, there are some wonderful sites and resources that feature gorgeous photos of beautiful children and youths with Down’s, and it does my heart good. This organization, Band of Angels, apparently was around in 1998, but it wasn’t as easily found as it is now, and it just has beautiful photos. When I meet someone with a new baby who has Down syndrome, I either buy one of their products to send or tell the parent about it. It’s just reassuring to see other kids with Down’s given the adorable-photo-shoot treatment. I found it comforting, at least, when I learned about it.
In the first months of her life, I was actually given some books and tons of pamphlets and packets of information about Down’s and different resources available and services and ideas of things I could do to give her a stimulating environment and help her develop. Honestly, I barely read any of them. All that information is simply too overwhelming. When you’re just trying in those early days to get some sleep when you have a baby waking up at night for feedings and diaper changes, that’s the last thing you have energy for: reading and researching. And then as she grew, we had some good support systems referred to us, so I didn’t feel the need to go searching for a lot more.
I think it’s that way parenting any child. There’s always more you can do for them, but never enough time and energy. So you just do the best you can to make their life happy, fulfilled and enriched. Now, I just hope and plan for her to have opportunities as she finishes up with the school system to be able to live semi-independently and have some kind of work and a good support system and network of friends. I want her to have a happy life, just as I want for my other three daughters. And she seems well on her way. Marissa is one happy teen.
Happy world Down syndrome day.
Life and Lims 
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