Somewhere along the way Down syndrome has sort of faded into the background of our existence. Life, as it pertains to The Boys, has stopped being about the role Down syndrome plays in the issue-d’-jour and has become, instead, about My Beautiful Little Men! About who they are and the amazing Little Men they are becoming. About what they need and what THEY want. About living a regular ol’ life…
just like everyone else!
I know that sounds strange and every mother, myself included, would rightfully insist it’s always been all about The Boys… not ever about the diagnosis. And while that’s absolutely true — it HAS always been about MY children… Always — it feels somehow a bit different now. I can’t tell you exactly what, when, how or why it happened. For all I know, it might have been when they turned two and I just missed the turning point while I was understandably immersed in living our lives. It certainly didn’t happen suddenly like an ah-ha! moment. I’m sure it was a gradual transition. A rounding of the bend sort of feeling, and then we just arrived…. Here!
Perhaps the transition started when their primary health issues — albeit minor — abated and I didn’t have to worry so much on a daily basis. And then a little bit more when we finally got fully and comfortably potty-trained. Then, perhaps we took another step toward “here” when The Boys started first grade in the school around the corner, with their sister, in a class of their typically developing peers, with appropriate support and friends who love them and who they love right back. Maybe we pushed on through when the phone started ringing for play dates. And then, suddenly, My Boys just became Brian and Michael and we found ourselves just living our lives… not noticing the change.
It hit me this morning as I sat down to write (something I’ve been missing lately). As I explored the potential insights I might share with those who follow in my footsteps, parenting a child (or two) with Down syndrome, I realized that Down syndrome is no longer occupying space in my consciousness anymore. Oh, it’s still there… back in the corner next to pneumonia. And, yes, I continue to advocate for my two Beautiful Boys who happened to have been born with an extra 21st chromosome and for anyone else who wants to chat about how we got here. BUT, on a day-to-day, livin’-our-life basis, whatever issues may arise are dealt with from the perspective of the Little Man in question and the issue at hand, not from the starting point of Down syndrome and the role it may or may not play in impacting My Boys’ lives. It’s just no longer about how Down syndrome may or may not play into whatever issue we are in the process of resolving. It’s just about the kid, about the symptom, about the solution, but NOT about Down syndrome.
Heck, I’m not even sure I, or anyone that really knows them, even sees the Down syndrome anymore. It’s just two Big Little Men growing up big and strong and healthy. And when a challenge arises, we deal with it. Once in a while I’m reminded that Down syndrome may be an underlying factor affecting my children. (Often because some well-meaning but under-educated person refers to them as “Downs kids.”) But it sure feels GOOD to not be focused on the diagnosis or how it will, has or might affect My Little Men yesterday, today, tomorrow or any time in the future. Today we live our lives like everyone else, and when we hit a bump in the road we ask, “WHAT is it and how do I get over it?” It’s liberating!
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On Sunday, My Boys turn eight. EIGHT! Every year I reminisce about that day… 2,920 days ago. The day My Beautiful Little Men graced the earth, and our family, with their presence. It’s not the day they came to live with us… THAT took several weeks more.
The silent fear that gripped me that day has faded like the pain of childbirth. It mostly eludes me now. Mostly… thankfully!
Eight years ago on Sunday I hadn’t felt The Babies move in two days. We knew nothing of their as-yet-undiagnosed Down syndrome but the concerns expressed by all but one of the doctors and one of the techs plagued me. Their highly informed medical opinions included microcephaly, hydrocephaly, viral infections in their brains and more, none having anything to do with DS which wasn’t on anyone’s radar (or sonogram). The doctors’ words — “still-born”, “vegetative state” and “painful death” niggled at my nerve endings. I was 32 weeks pregnant and more than HUGE. I prayed My Babies were just over-crowded in there, with less room to move about as they, and I, grew. That often happens towards the end of a pregnancy though I wasn’t at the end, per se. But, there were two babies so I reasoned against the doctor’s educated guesses. Then, before bed, I spotted bright red blood. In the pregnancy realm…. that’s NOT good! Calmly, I told the hubby and called the midwife. She said what I knew she would… go NOW to the hospital and get on the monitor to make sure the babies weren’t in distress. At 9pm I left “Lou” and the Old Soul promising, “Mommy will be right back.”