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The support group didn't cover this part.
By Karen Murphy |
May 22, 2008
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Read more: karen murphy, long journey on a short bus, special needs, down syndrome
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I have a secret.
Well, it’s not really a secret. Anybody with half a brain can see that my son has Down syndrome. Of course, anybody with Down syndrome only has half a brain. Ba dum bum.
(I can tell those tasteless jokes because believe me, I have earned the right to.)
No, the Down syndrome thing is not the secret. Although I did try to keep that a secret for awhile. More about that later.
The secret is this: sometimes I wish my kid was somebody else. Or somebody else’s kid.
(Did I just say that out loud?)
Eric is four. He spends his days this way:
1) Eating and rooting through the cabinets to find more things to eat,
2) Systematically throwing our large collection of lovely wooden Waldorf toys (they make great dents in the walls),
3) Gazing sort of blankly at the television, the one I de-Waldorfed enough to ignore half the day while it plays mindless PBS kid’s shows and endless Scooby-Doo reruns. And please do not ask me the words to the songs on “Big, Big World,” because, sadly, I know them. And I often find myself singing them.
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Eric goes to preschool. The day a year and a half ago that he first got on his bus, the short bus, I cried. He was my baby, my youngest. He was barely three and I had carried him his entire life. I breastfed that kid for over two years. We were inseparable. I knew everything about him. I signed to him, played with him, did therapy with him. I spent my days for three years trying to make him more. More appealing, more communicative, more healthy. Just... more.
Eric got on his bus. My fingernails were bitten stubs. I stood outside the bus, trying to catch a glimpse of his little face through the glare on the window.
He was waving.
“Baah!” he yelled, smiling. Bye. He probably didn’t know where he was going.
When Eric was about six months old, I began having pains in my chest. “My heart hurts,” I told my now ex-husband.
I hate doctors. They never find anything wrong. My heart hurt, it hurt for weeks, and there was nothing to see, nothing to detect. It just hurt, and no one could tell me why. I wanted something concrete to point to, a reason to continue ignoring my reality.
I knew why my heart hurt.
At Eric’s birth, a gentle quiet birth in a huge warm tub of water, the midwife looked at me sort of funny. She glanced at Eric again, looked at his hands, his face, then gave me another intense look.
“He has Down syndrome.”
From somewhere an anvil dropped on my heart. My brain stopped. The Universe held its breath.
Not my baby. He was fine. A little small, but so what? I didn’t eat during the pregnancy, didn’t want to gain weight (didn’t want to be pregnant, but we’ll ignore that a moment). I wore my regular jeans buttoned below my baby-belly and everyone was so admiring. So he was fine. He looked just fine. He was fine.
By the time the results of the genetic testing came back, I knew there was something different about him. Sort of. The holistic practitioner I took the other kids to didn’t want to treat him. I heard phrases like “failure to thrive.” Everybody was so interested in weighing him all the time. Five pounds? So what? All my babies were small at birth. He’s fine.
The Ex suggested we not tell anyone outside the family, and he meant just himself and me, that Eric had Down syndrome. I couldn’t tell my parents, my friends. I couldn’t even tell Eric’s big brother and sister, 8 and 4. I couldn’t tell myself.
So when my heart began hurting I went to the doctor anyway. Even though I knew.
Up until a year and a half ago when Eric started riding the short bus and coming back home, more himself every day he was away from me, I thought I had the thing licked. I had won. I loved that boy, his sweet face, his round belly, his eyes. He was mine. I loved all his impossibilities.
But sometime since then, something happened. He’s not the same boy. I’m not the same mom. I look at him, as he commands me to turn on Curious George (“T.B”, he yells. “Gah!”). He looks back at me with his empty Down syndrome eyes. Who is in there? I can’t tell anymore. I thought I knew. But he’s not a baby any more, no longer nestled in my arms in a sling next to my broken heart. He’s a boy who digs deep behind him and then smears his own poop on the T.B. while he stands 4 inches away from it watching Curious Gah. He’s a boy whose communication is limited to pointing at the bananas on the counter and then himself, smiling and nodding in encouragement.
He’s a boy who has given up. He can’t be more. He can only be Eric.
And I wish I knew who Eric was. I think he incised it on my heart once, and sometimes I still feel the scars.
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| Karen Murphy is presently between blogs and between homes. Armed with only a laptop and typing with her bare hands she scrawls holdup notes and to-do lists for Work It, Mom's Catch Your Breath and for Parentricity. She's also a professional channel-psychic who knows what you're thinking right now.
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