 |
||
My kid's going to die. Is yours? |
||
| |
||
|
When you have a kid with special needs, all bets are off. Nobody plays by the rules. This was driven crashing home to me recently. My friend’s son died unexpectedly. One day he was there, and the next he was shockingly and heartbreakingly dead. There was no accident; his body simply failed to continue living. I had never met him but I was blindsided. I had forgotten. It all came rushing back to me then, all the panic I had felt for months after Eric was born, all of the middle-of-the-night pleading, the bargains, the all-night vigils, the waiting and fervent hoping for him to take the next breath, and the next. You play the game until you can’t stand it anymore, your breath coming in loud ragged clumps as you imagine the tiny coffin, the tiny headstone, and your life so forever changed that you don’t know where to look or what to say or to think. You play the game until you either rush downstairs, desperately putting your hand on his tiny warm chest to feel his little bird-heart beating and the rising and falling of the breath you strained to hear through the monitor, or you hear your baby snuffle and sigh and the game is suddenly over. You’re back in your body again, breathing, and you tell yourself how silly you were. That there was never anything to worry about. That everything is fine. That it was just a game. Except with some kids the game is real. When Eric was small I used to lie awake next to him for hours, willing him to take the next breath. Just one breath. I’d hold my own breath whenever the pause between the rise of his chest and the next fall seemed to take too long. When it did I’d shake him a little and call his name as if that would help him to remember to breathe again, to remember where he was. He was just forgetting to breathe, I told myself, just letting himself drift along in some peaceful state of baby-nirvana and it was my job to make sure he remembered, to call him back from whatever warm place he went to and to remember to stay here. With me. At night I whispered urgent pleas to him, asking him to stay a little longer. To stay and to grow up so I could someday see who he was. To stay so I could feel him near me. He was a part of me and I wanted him close. I had known him forever, somewhere, and I wanted him here where I could touch him, where I could say his name right into his eyes. His heart-response always was that he was tired, so tired, but that he’d try. I figured that if I wished it hard enough, I could keep him alive. I could keep him here. I could keep him breathing and wanting to be here. It’s a terrible burden, this taking on of the responsibility for another life. We are not meant to bear the weight of another as well as ourselves. The tension of those months was unbearable. It kept me awake for weeks on end. It wore ragged holes in me. It shattered my heart. So many parents have so much more to bear than I did with Eric. He was one of the lucky ones: he was only small and fragile. So many other kids have heart issues, surgeries and more surgeries, and really precarious lives. So many kids live just on the edge every day, walking a fine line between here and not-here. Eric grew, finally, and he’s now a sturdy kid, on the small side maybe and prey to every respiratory infection known to man, but sturdy. My worries about him have a very different flavor now than they once did, and these days I take his breathing for granted. Like we all do. I believe that death isn’t forever, that we are all a part of some great All That Is, but I expect life to play by the rules. There’s a good chance that Eric will still die before I do. But I can push that thought aside again for awhile until another reminder comes crashing into me, another reminder that sometimes in life there just are no rules. | ||
|
||
4 Responses to "My kid's going to die. Is yours?"Leave a comment: | ||
| ||
| ||
IMPERFECTION IN YOUR INBOX
 | ||
 | ||
| ||
POPULAR RIGHT NOW
Coffee or Tea, Which One is for Me? When I registered as an Independent, I did so because... read more » The Ides and Crooked Teeth of March According to the old saying, the month of March usually... read more » Why I'm tired of the GOP There's no doubt (except perhaps among loyal listeners... read more » |
About The Imperfect Parent | Submission Guidelines | Press | Contact Us | Advertise on The Imperfect Parent | Privacy Policy | Terms of Use
All original content © 2002 - 2010 The Imperfect Parent™ and Tiny Tantrums Media. The Imperfect Parent and Mominatrix are trademarks of Prudentia Communications Group.
The views, opinions and information expressed in articles and blog posts published on imperfectparent.com and all subdomains are those of the authors alone. They do not represent the views or opinions of The Imperfect Parent or its staff, nor do they represent the views or opinions of any entity of, or affiliated with, The Imperfect Parent and Prudentia Communications Group. The Imperfect Parent is designed for entertainment purposes only and is not meant to be a substitute for medical, health, legal, or financial advice from a professional.
Reproduction of material from any of The Imperfect Parent's pages without written permission is strictly prohibited. The Imperfect Parent and Tiny Tantrums are trademarks of Prudentia Communications Group.
1. Anne
Sep 26, 2008 14:53
Wow, this was good. I thought I was the only one to play the Baby Monitor game - I'm glad to hear I'm normal and not the obsessive, morbid-thoughts-thinking Mommy I thought I was! I'm sorry about your friend's son. Nothing hurts like hearing about children dying. I'm glad for your Eric - you're a great Mommy.2. Jessica
Sep 26, 2008 17:53
Every time I read your essays, it touches me deeply. You're such an awesome writer and I love how you're able to bring people into the heat of the moment, feeling the anxiety as if they were peering at you through a window.I can't imagine anything worse than losing a child. The thought of it makes me heart-sick.
3. Kathy
Sep 26, 2008 18:42
My 19 year son is a special needs teen and going strong, but you're so right about the risks of early death being so much higher for them then for others. Thanks for the thoughtful post and I look forward to meeting you a LONG TIME from now in the All That Is! : )4. Jonathan
Sep 26, 2008 20:59
I'm not a mother, nor do I have a special needs kid, but you put so much emotion in your writing that it just draws you in. You really help create compassion and understanding.