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Down Syndrome Awareness: Get to Know my Kid

Down Syndrome Awareness: Get to Know my Kid

When I was pregnant with Amelia, I was absolutely convinced that this baby, from conception, was “meant to be” and therefore did no amniocentesis or CVS.  Everything about my pregnancy was amazing:  The long string of coincidences that allowed me to find my OB, the dedication of that amazing doctor who discovered the cause of my stroke some years earlier, and the preventative care that got me safely through labor, delivery, and post-partum. 

After she was born, imagine my shock when doctors “suspected” something was up and took her off to have a karyotype blood test to look for chromosomal damage.  By this point, I’d learned enough to know that if a baby as healthy and together as mine had some chromosomal issues, it could only mean one thing: Down syndrome.  When I finally got the results a few weeks later, I broke down and spiraled into an 8 month depression. Why would God let this happen? Wasn’t she meant to be?

The months rolled on, and we discovered that she had a hole in her heart.  We watched her like a hawk, looking for changes in appetite or breathing or color that never took place.  In fact, Amelia was an easy baby. She rarely cried unless she was hurt or getting an echocardiogram – no baby likes those sticky things all over her chest!  She learned to smile and laugh early on, and in no time at all, she’d cheer whenever I’d come into her bedroom.  She slept through the night by four weeks old and is, to this day, a champion sleeper.  By the time she was cleared of heart problems, we already knew she’d be fine. She made me laugh and forget problems so often that knew that I was right: this baby was meant to be. 

I don’t know whether I‘d change things if I could. She was not what I expected at all, but Amelia exceeded all that I could have hoped for.  Every day is a pleasure. She is quick to laugh, and easily gets over anger, pain, and sorrow.  She has a loving heart and a nurturing soul.  If you hurt yourself, she will come over and ask if you are OK, and if you cry, she will put her arm around you and tell you it’s OK.
She works hard at school, sports, and she’s a true movie buff, preferring films like “Jurassic Park” and “Pandora”.  She loves playing basketball, climbing, dolls, and the Wii, and she is the most popular kid in her class.  Really – all the moms I ran into over the summer told me their kids were worried she wouldn’t be in their class!

I’d like to tell you what a privilege it’s been raising Amelia.  Was she meant to be? Oh yea.  Will she be something amazing when she grows up?  Yes, because she’s something amazing already.  Am I worried about her future? Nope.   Just like the song says, she’ll make her way. If you’re wondering what you can do for Down Syndrome Awareness Month, get to know a person or a child with Down syndrome. Stop thinking of it as some disability and put a face to it, because, just like the rest of us, people with Down syndrome have amazing tales to tell and personalities to share, and if you’re lucky, they just might turn your world right side up.

To learn more about Down Syndrome Awareness Month and  how to participate, check out National Down Syndrome Society's web page.

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  • cocoabella By cocoabella
    11.02.11  

    thank you for sharing your wonderful story. Sounds like your daughter was a blessing in yout life. My hat is off to you for championing for Down's Syndrome.

  • TankaWanka By TankaWanka
    11.02.11  

    Gina, I am a mother of a child with a genetic syndrome. We tested him for nearly anything, and 5 years later, we still don't have an answer. Honestly, now we don't need one. I have learnt to enjoy him the way he is: he looks different, develops at his own pace, but he has a great sense of humor, is loving and now I know: this was a gift! I have learnt to be more tolerant, patient and understanding. Thank you for sharing this, and cheers to us!

  • Luzecita By Luzecita
    11.02.11  

    Thank you so much for sharing your story. Thank you for helping remove the sigma from children that are not "normal". My youngest sister has a chromosomal syndrome. The first years of her life were very challenging for her and my parents. But she was meant to be. She brings joy to our family and your story about Amelia resonates with me. God bless you and your family...

  • basilandcatnip By basilandcatnip
    11.10.11  

    Thank you for sharing your story. I've been lucky enough to meet some special people through my volunteer work. I just love seeing life through their eyes.

  • MiscRamblings By MiscRamblings
    11.10.11  

    Gina - You are such a wonderful and loving person. I am glad to know you each and every day!

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