Calvin attended preschool at a place called Morrison Developmental Center. It used to be called the Cerebral Palsy Center, though it caters to disabled kids and typical kids alike, sharing one big classroom. That’s what made it great.
There was a cute little boy in his class who had what seemed like a pretty severe case of Down Syndrome. He also had epilepsy, like Calvin. His nurse pushed him into class reclined in his wheelchair, his head in a supportive rest. I think he may have been tube fed, too. I recall him crying at times, his face all hot and pink, making my throat tighten and my heart sink. Poor little guy, I thought. I wished I could take his misery away. Mostly, though, he slept during the few hours I was there watching Calvin, the heavy sedating epilepsy drugs working their black magic on his brain, and Calvin's.
Last year we ran into the boy with his mother at a Boston hospital. Our sons share the same wonderful neurologist. In a short exchange we introduced ourselves, she a kind, attractive curly-haired blond who I guessed was several years younger than I. She asked if we had other children. I said, no, thankfully we did not, thinking Calvin such a handful, medically, physically and emotionally, and being too old to risk another pregnancy. By sheer reflex I asked her the same. Her eyes brightened and she replied, "thankfully, yes," that her second child was some sort of godsend that helped her get through the difficult days, the grief, pain and worry over her disabled child, and who somehow made it all worthwhile, all okay. At that, a hot poker jabbed into my ribs and worked around fiercely in my viscera. My heart cringed and I felt a little ill. Cat got my tongue, too, though I tried my best to conceal the blow. I wanted what she had, what she so effortlessly seemed to have that filled her heart and soul with joyous riches beyond any I could possibly imagine.
She ... had a healthy child.
There was a cute little boy in his class who had what seemed like a pretty severe case of Down Syndrome. He also had epilepsy, like Calvin. His nurse pushed him into class reclined in his wheelchair, his head in a supportive rest. I think he may have been tube fed, too. I recall him crying at times, his face all hot and pink, making my throat tighten and my heart sink. Poor little guy, I thought. I wished I could take his misery away. Mostly, though, he slept during the few hours I was there watching Calvin, the heavy sedating epilepsy drugs working their black magic on his brain, and Calvin's.
Last year we ran into the boy with his mother at a Boston hospital. Our sons share the same wonderful neurologist. In a short exchange we introduced ourselves, she a kind, attractive curly-haired blond who I guessed was several years younger than I. She asked if we had other children. I said, no, thankfully we did not, thinking Calvin such a handful, medically, physically and emotionally, and being too old to risk another pregnancy. By sheer reflex I asked her the same. Her eyes brightened and she replied, "thankfully, yes," that her second child was some sort of godsend that helped her get through the difficult days, the grief, pain and worry over her disabled child, and who somehow made it all worthwhile, all okay. At that, a hot poker jabbed into my ribs and worked around fiercely in my viscera. My heart cringed and I felt a little ill. Cat got my tongue, too, though I tried my best to conceal the blow. I wanted what she had, what she so effortlessly seemed to have that filled her heart and soul with joyous riches beyond any I could possibly imagine.
She ... had a healthy child.
Respectfully and with bona fide interest I write as "the mom" (and fellow advocate and writer) of whom Christy writes today. One of the most astounding things I learned as it became obvious that our firstborn was profoundly disabled was that no one sees the same situation in the same way. Our son Miles' dad and I almost never were able to get on the same page in the way we viewed Miles' terrible, ravaging seizures, and the appropriate next course of treatment. So in posting a reply today, I simply want to share my view of the same encounter--not to defend or backpedal or dissect Christy’s great writing, but simply to compare and contrast and illuminate its ironies from where I sit.
ReplyDeleteMy first reaction is "Could I possibly have said that I had another child with those words?!" and, if I did, that I am sorry to Calvin's parents. What probably came across as gloating from me that day was a woman just starting to exhale after four years. And most of all, I owe Miles an apology if I spoke in a way that implied that our having a healthy second son made up for having him. Because that's honesty not how I feel about Miles.
I will say that, for OUR family, we could not have started to achieve some semblance of normalcy having only one sick child. Our blinders about his total-care requirements and his medical fragility were too heavy, too all-encompassing. Both my husband and I pretty completely both lost our joie de vivre as the depth of our son’s “challenges” sank in, as we packed endless suitcases to go live with him in the hospital time after time and felt the floor of our comfortable world completely fall out beneath us. Life as we knew it was over; nothing was easy or predictable or fun anymore, but most of all, we were stricken with grief every second at how little our son had been given. Having another child nearly four years later who developed normally did help us to get back some of our joy while enabling us to feel more at peace and happy about Miles at the same time.
I will say that I do worry for parents with one sick child who choose not to have more, because of my firsthand experiences in that regard. Miles’ and Calvin’s shared doctor also encourages families to continue with their original family planning for the same reasons. But that I have tremendous respect for those mourning parents’ needs, and for that very individual decision.
I will say that having a second child after Miles felt like like playing roulette, and waiting those two weeks for the amnio results for Miles' in-utero sibling may as well have been five years. This type of lightening can and does strike twice, and we knew it. What gave us a modicum of confidence was that it was statistically improbable that we would have a child that severely disabled a second time. That was our sad reassurance.
And I will say that my ongoing desperation for ANY development in Miles (who was pretty much robbed of all his skills by his seizures) still can somehow make me envious even of our "comrades-in-arms" like Calvin and his familly. Calvin can walk, Miles cannot, so things MUST be easier for them. Except that Miles seems to have outgrown his seizures, and Calvin has not. So things must be easier for us. The truth of the matter is that neither of these boys was given a fair chance, regardless of the scorecard breakdown. Somehow the grass is perpetually greener on the other side, even though Christy’s and my God-awful deep pain about our beautiful sons is more shared and more similar than we probably know.
michelle, you have brought insight full circle with your thoughtful comments. i can tell you are an amazing woman who not only walks with grace but also walks in others' shoes with grace. it is often difficult, if not impossible to know, what others' lives are like and thus, we can only begin to imagine. you have painted an honest and beautiful portrait of your family life with utter clarity and purpose. thank you so much for writing. i am most humbled and i cannot tell you how much you have taught me in this one, short entry. no matter how worn, abraded or obscured, there are indeed two sides of every coin. i want to see and feel both. you have helped me.
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