Some Things Are Just Meant To Be

My oldest son, Daniel, was born with Down syndrome. Because I've never wanted to define him--nor have others define him--purely by his disability, I always try to view him more as a young man who happens to have Down syndrome than "My Down Syndrome Child." He is above all else a human being, deserving of the same dignity and respect as any other human being. That's why I like to stress the things he has in common with other human beings, rather than focus on his differences too much.

Acknowledge them I freely do. I know, for instance, that he'll probably never marry and have children, never drive a car, never earn a Ph.D., learn to play an instrument, become a star athlete. But I also believe that focusing too much on his physical, emotional, intellectual and behavioral differences would only serve to limit him in life, and limit how others perceive him.

So until now I've avoided writing posts that focus on his disability. I don't intend for my blog to become Down Syndrome Central or anything. But because, as I said in my previous post, October is National Down Syndrome Awareness month, I hope you won't mind if I indulge myself in one more Down's-related post before the month is out.

I have a few thoughts to express today about how, in retrospect, it almost seems as if Daniel was destined to come into the lives of my husband and me.

There's the issue of genetics, of course. I had a great uncle who had Down syndrome. Lived to the ripe old age of 69, he did, which is quite old for someone with this disability. I attribute his longevity to the fact that, in an era when so many handicapped infants were whisked out of the arms of their heartbroken mothers and fathers to be hidden away in institutions, my great grandma and grandpa--a hearty Minnesota Swede and German, respectively--kept their boy at home, where he was raised alongside his three "normal" siblings, and where he remained until both of his parents had died. Only then did his siblings look for, and find, a wonderful group home for him, where he had a job, friends, and a thriving social life, and where he was eager to return after his weekend visits with family. (Which is always a good sign. It's when they DON'T want to go back that you should worry.)

So was it simply a question of genetics that brought Daniel to us? Surprisingly, it wasn't. When the doctors did all the blood tests, they discovered that neither my husband nor I was a carrier of the gene that causes the extra chromosome associated with Down Syndrome. So it was purely an "accident." And because we were quite young when we had him (early 20s), it was against pretty high odds (about 1 in 1000) that he was born with the disability. Everyone knows that the odds of having a baby with Down syndrome increase greatly with the mother's age, so that by the time a woman is in her 40s, the risk is very real, and goes up higher with each year. But to be 23 and have your first child born with Down's...well, let's just say it takes you completely off guard.

So what makes me feel that I was destined to have a baby with Down syndrome? Call it intuition if you like. First there was the fact of growing up with Uncle Tommy around. Everytime dad would put mom and all of us kids (there were *ONLY* five of us at the time in our still-growing family) onto a train in Chicago's Union Station and we'd head up to Minneapolis to visit her relatives--there Uncle Tommy would be, just he and great-grandma left in the old white clapboard house he'd lived in since his birth around 1930.

As we kids and our Minnesota cousins ran wild around great-grandma's cozy old house, Uncle Tommy would be sitting there in his big worn armchair like a king on his throne in the tiny living room, watching his favorite shows on TV. Every time we got too loud for him or blocked his view of the TV, he'd get all flustered and forcefully say "SHHH!" to us, putting a finger to his lips for emphasis. But other times he seemed to enjoy having all of us little kids bustling about and disrupting his normally calm, quiet house. A smile would crinkle his sweet slanted eyes as he'd

watch us play. Sometimes he'd even try to talk with us a little.

Ever since those days, I always felt somehow drawn to people with Down syndrome. Whenever I'd be out with my parents at the zoo, a museum, restaurant, etc. and spot a person with Down's, I'd just kind of watch them for awhile. I wouldn't stare rudely at them or be impolite in any way about it. I just felt compelled to acknowledge them, just because I cared, and felt a strong affection for them. Long before my Down syndrome baby was born, I often had to resist the overwhelming urge I sometimes felt to wrap my arms around people with Down's and give 'em a great big hug.

To be completely honest, in those early years I was also slightly afraid of and even slightly repelled by my uncle, with his thick tongue that was always pushing out of his mouth as if there just wasn't enough room for all of it in there (which of course I later found out is exactly why many people with Down's have the very same problem). And I was scared a bit by his droning, slurred speech and the moaning noises he'd make when he just couldn't find the words in his limited vocabulary to express what he was feeling, and so had to lash out somehow in frustration.

Yet at the same time, I was also mystified, fascinated, empathetic and curious about him. Though he was a grown man in his 30s at the time, he seemed so childlike and vulnerable with his lumbering, shuffling gait, his stubby fingers, his thick neck, his wire-rim glasses and that protruding tongue, so I felt almost protective of him, even when I was just 6 or 7 myself. I guess I just sensed that he was still a lot like a kid himself. He had a thing for Superman, liked to wear a towel pinned around his neck with a safety pin as a cape. And he loved cap guns. So how could a 7-year-old not relate to him, right?

So this background of growing up with Down syndrome as a normal part of my family life sort of groomed me for what was to come in my own life, though of course I had no idea then what the future held for me.

Then there was that textbook in my Intro. to Psychology course in college. I remember very clearly being drawn to pictures of people with Down syndrome in the chapter on "abnormal psychology." As I pulled an all-nighter to prepare for a test, I can still remember staring at those photos, quite mesmerized by the sweetness and innocence of those faces, feeling a surge of compassion, love almost, toward them...that protective feeling again.

And perhaps most strangely and presciently of all, there was the time in the hospital, just days before Daniel was born. My doctor had admitted me two weeks before my due date, after we realized I was quite small for my dates. After he'd studied the results of an ultrasound, he sat us down in his office. I clearly remember him sitting across from my husband and me at his desk, giving us the diagnosis: Intrauterine Growth Retardation. He must've noticed the involuntary reflex of fear in our eyes as soon as he uttered the word "retardation." Because he quickly added, "And I stress, this just means PHYSICAL retardation. The baby's PHYSICAL size isn't measuring up." (I guess he really didn't know about the Down's at this point, or I don't think he would've said that. At least, I hope he didn't know yet, and that he wasn't just withholding that information from us to postpone our grief.)

As I lay there in my hospital bed that weekend, missing my own baby shower, waiting for labor to be induced the following Monday, I picked up my copy of LaLeche League's guide to breastfeeding and started flipping through it. Though I'd exhaustively researched this topic over the past nine months, I figured it couldn't hurt to review. After all, I'd be needing this knowledge a little sooner than I'd expected.

And there in that book was a photo of the sweetest, most beautiful baby. My eyes kept being drawn back to it, almost involuntarily. Yes, you guessed it: The baby had Down syndrome. And he was a boy, in an adorable little baseball cap, I remember. He had the sweetest grin on his little face. I couldn't stop gazing at that photo, my heart swelling with love and tenderness for this pure, innocent little guy who'd drawn a short straw in life, who was starting out life with a huge strike against him. But he didn't seem to know that, or to mind. With that sweet smile on his face, he just looked so happy to be alive. He was in the chapter on nursing a child with special needs.

I finally forced myself to turn the page after awhile, truly thinking I'd never need such information. I still had that confidence that most first-time parents have that their baby will be absolutely "perfect."

And then, two days later, our Daniel was born...with Down syndrome. It was a devastating shock and a raw wound for quite awhile. But in some ways I'd been preparing my whole life for his birth. Strange how life works sometimes, isn't it? And he DID turn out to be quite "perfect" in his own way, after we, his parents, were able to do some adjusting, some rearranging of our initial dream. We just needed to learn to live with a new, slightly revised definition of the word "perfect."