special someone with autism

Custom Search

Thursday, January 19, 2012

Except for Breathing

From Alex: The Fathering of a Preemie

I get up at 4:30 this morning, and now it's almost 8 p.m. My eyes are raw, my head is light, my legs ache, and I think, "I've been a <I>lot<I> more tired than this lately."

It has been five months, and Alex -- my son who was born premature at 21 ounces, my son who won't meet his mother's eyes when she holds him -- is okay except for breathing. He spends his time on a vent of one kind or another, the oxygen pumped into him slowly scarring his lungs, making it tougher for oxygen to be taken into his blood. But he's getting there, I guess. He's been getting there ever since Jill and I stood outside the hospital and said things like, "At least it isn't turning into a hot summer." Now we're still standing outside the hospital, hugging our coats closed while the leaves swirl around our ankles and Alex climbs out of October. He's eating from a bottle again, looking at the ceiling, gaining weight. And yet "you have to be the best person you can be for when he comes home," they're telling us again. They love to tell us things, as our lives are still laid bare under hospital neon. I've lost whole nights of sleep since June.

Other nights have just evaporated. And he isn't even home yet. Parents of healthy full-termers say, "You'll be happy to get six hours when he comes home!" Okay. Just remember there's a world of difference between getting up at 2 a.m. to rock a baby to sleep, and getting up at 2 a.m. to speed him to the ER before his lungs give out. These days, the morning coffee slides uselessly over my tongue. By 9:30 my bones feel like balsa wood. By noon I need aspirin. By afternoon, my head grows heavy and my sight grows weak.

Most nights I leave work at 5 p.m., and catch the subway uptown. Sometimes at the hospital door the security guard still asks to see the plastic ID band that was fastened onto my wrist when Alex was born and rotted off weeks ago. Alex still has a tube up his nose, but the weight is returning to his face and he's taken to bopping his arms to cassettes of Pete Seeger and Chet Baker. He chomps on his pacifier, bouncing his eyes across the ceiling and across Jill's face as she reads him a baby book: "How cute is baby? <I>So<I>cute! How smart is baby? <I>So<I> smart! How sleepy is baby?...

When I rest him on my chest, I close my eyes. I feel his five pounds seven ounces and think, "There is a future here." Who's daddy's little guy? Alex is. To watch him sleep is torture as my head lolls forward. Then I open my eyes and he opens his and seems to ask, "How much longer?" What a cute, smart question! For about 130 nights we've called for Alex's condition before we went to bed. We've asked for the nurse. She – they’re all women – has said "Hi." We've said how are you? She's said fine. There the conversation has often settled until we asked how in hell Alex was doing. I would like to care how the nurse is feeling. But I don't. 


Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Related Posts Plugin for WordPress, Blogger...