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October 2, 2012

What’s this all about?

Well, October is National Down Syndrome Awareness Month and 19 years ago (August) I became the mother of a little boy that just happens to have DS I figure I need to jump on this band wagon and ring the bell so to speak.

Having a baby with Down Syndrome isn’t all the doom and gloom many doctors predict it to be, in fact, the early years often find you dealing with the same issues as all mothers of newborns deal with on a day to day basis. The difference? Well, some babies have heart issues (but then again in the typical population some babies have heart issues). Some babies have GI issues (oh, wait, that too happens in the typical population). When Nickle was born he had some heart issues but they were the same ones many newborns have Patent Duct hadn’t closed by birth but did within the week and he was diagnosed with an Aortic Valve Regurgitation (that is similar to the Mitral Valve issues many people have, basically his Aortic valve while fully formed didn’t seal when it closed so there was a little back wash so to speak). Around the time Nick was 6 we found the AVR wasn’t heard via stethoscope but only found during an echo and even then it took some looking. His ped at the time said we’d treat it the old-fashion way. In other words, what we can’t hear we’ll assume has corrected itself unless other signs show it hasn’t. So far, we’ve been good following that advice.

As a toddler and preschooler Nickle was behind many of his typical peers but he was able to figure out how to get what he needed or get where he needed to go. For the longest time he preferred to crawl commando style rather than on all fours. His OT (oh, that’s one thing we learned that was different from having a typical baby/toddler/preschooler — lots of assistance in the form of OT {occupational therapy — think fine motor}, PT {physical therapy — think gross motor} and speech therapy) finally got him walking by putting a golf club in each hand. He still enjoys golfing today and has actually gotten his Dad to enjoy the game as well. As his Dad put it, playing baseball or passing a football was out but golf was something they could do together forever.

Nickle is a senior in high school now and is so proud of that status (aren’t all seniors?). Life hasn’t exactly turned out like I dreamed as a young girl but in many ways it is much more richer than I ever could have imagined. There are struggles as we face life with Nickle as an adult. You moms of typical seniors who are worrying about your baby bird leaving the nest — take heart, they will fly provided you have given them the proper training (and even if you haven’t) and I pray you have given them the roots they need so they can cling tightly to those when they need to as life goes forward. As for me and Jeff, we’ll be working hard at teaching Nickle to fly and one day I can trust he’ll figure it out just as he figured out how to walk and run without those golf clubs in his hands.

One Comment leave one →
  1. April 23, 2014 1:27 pm

    Do you still blog anywhere? I just found your blog from incourage – women are saying why they love their husbands. I have a 2 year old with Down syndrome, so I had to check out your page. Now that Nick is out of high school, what is life like? I’m learning so much. You can email me at tomaid at yahoo. Or find me on facebook. Deborah Tomai

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