Wednesday, May 2, 2012

Special needs parenting

Imagine someone is relentlessly and continuously chucking molatov cocktails at your child. Not in any regular pattern, just haphazardly, so you never know when to expect them. Sometimes you can see the bombs sailing through the air from fairly far away and can quickly throw a makeshift shield -- your own body, if necessary -- in front of your child. Other times they come from out of nowhere with no warning -- crash, scream, flames. This isn't some sort of punishment for past deeds. Your child is absolutely innocent and undeserving of such a thing. It just happens. Just one of those things that happens to a random minority of people. No one is to blame. It's the luck of the draw.

Your only weapon against this relentless firestorm, your only hope of helping your child, is ... a thimble. Tiny, fingertip-sized, it holds maybe a couple of milliliters of liquid. Oh, and the nearest water source? It's 10 miles away, surrounded by an electric fence and razor wire, and owned by someone who is armed to the teeth, devoid of empathy and reason.

So the bombs come, and your child screams and burns, and you go running with your thimble that whole 10 miles, as fast as you can. You can see the water there, a whole lake of it, but you can't reach it. It's off-limits to you. You ask, "Please, may I fill up my thimble? My child is burning!" But the person who owns the water doesn't believe you. "Your child isn't REALLY burning. And even if he is, how bad can it be? Why should I take your word for any of this? Bring me a letter from an expert on fire who will swear that your child is, in fact, burning."

So you run back, all the way back, the whole 10 miles with your empty thimble. Maybe the flames have gone down a bit on their own. Maybe a kind soul has stepped in and tried to dampen the fire. Maybe, miracle of miracles, a tiny, temporary trickle of water has been discovered nearby! Or maybe the bombs have continued to fall and there is no other water and things are so much worse.

You find the expert. He can't evaluate your child for months, maybe even a year or more, and meanwhile the bombs keep falling and your child keeps screaming and burning, but finally you get that all too valuable piece of paper. You run 10 miles with your empty thimble back to the water.

"Look, the expert says my child is burning! Please, can I fill my thimble in your lake? Just one thimble full of water?"

But the answer is no. "I need more information. Is your child on fire ALL the time, or just some of the time? When he's on fire, does it keep him from performing ALL of his basic functions, or just some of them? How do I know your child is burning enough to really NEED the water? And anyway, what have you done to fireproof your child? You have to help yourself, you know. You can't expect other people to do it for you. Oh, and what are you feeding him for breakfast? Are you married to his father? Did you take drugs when you were pregnant? Here, you'd better fill this out. In triplicate."

So you do. You fill out the forms. You explain about the fireproof clothing and the shields and the safe rooms and all the things you've done since the day the bombs started coming. But there are so many bombs coming all the time. There is just too much fire. Just a little bit of water would help so much. But the answer still is no. "Other people need that water too, you know."

Now you have to actually bring your child the 10 miles to the lake, your child who is on fire. So you run 10 miles back home with your empty thimble. You grab your child and struggle to carry him the entire 10 miles back to the lake. It takes ages and ages. Maybe the flames go out on the way and your kid is just a burnt husk but not actually on fire by the time you get there; that means no water for you, regardless of the objective certainty that the bombs will never stop coming. Maybe you get "lucky" and your child is completely engulfed in flames when you reach the lake. Then -- and ONLY then -- are you allowed to fill your tiny little thimble and throw a few drops of water on the fire. That's assuming you can afford to pay for the water. Oh, did you think it was free? No, silly. You have to pay for it. Probably more than you can afford.

But if you need more water than that one thimbleful? Or if it takes you a while to get the money together to pay for it? Well. Be prepared to repeat this process all over again from the very beginning. Every last miniscule step of it, for every tiny little thimbleful of water you need. While the bombs keep falling.

Sometimes good things happen. In your 20-mile round-trip journey to the lake and back, you see other parents running, limping, dragging themselves along with their own thimbles and their own flaming children. At first you keep a wary distance from one another. Pretty soon you find yourselves nodding and waving. Before you know it, you're trekking along together, comparing notes on where any creeks or ponds might be located and which doctors make the best burn ointment.

Every now and then the clouds lift, the angels sing, and the lake gets a new owner who takes one look at your battered thimble and your scarred hands and says, "Kid on fire? Right. I can have 50 gallons delivered to your house, free of charge, every week. Let's see how that goes for a few weeks and then re-evaluate. Sound good?" But these reprieves are rare and always temporary. Before too long you find yourself once again making that long trek, thimble in hand, clutching your burning child.

And you just keep on doing it, carrying that thimble wherever you go in case you find water closer to home. You do it over and over and over again until you are exhausted, and sometimes you get so numb that the crash of the bomb doesn't even make you jump, and you hardly hear the screams, and you barely feel the heat. Other times the flames lick out in your direction and you burn and scream right along with your child, feel your skin blister and peel, and not a drop of water to be found. Either way you find yourself time and again halfway to the lake, soot-streaked, clutching your thimble, before you're even fully conscious.

You keep doing it because you love this child more than anything in the world. Because he is worth a thousand million treks to and from that lake (barefoot, over broken glass). Because he's done absolutely nothing to deserve what's happening to him. Because you're all he has. And because the only thing worse than continuing is the thought of what might happen if one day you just stopped and let him burn.


  1. Yep. Like that.

  2. Beautifully, achingly said.

  3. This is such a beautiful and heartbreaking post.

  4. This should be compulsory reading for anyone wanting to understand what it is like to be a parent to a special needs child. Between you and Kim and the lessons I have learnt from you both are deeply felt.

  5. I completely second what Mary just said.
    You and Kim are amazing women, powerful people and the quintessence of what a mother should be.

  6. This should be published somewhere. Brought tears to my eyes. I don't even have children.

  7. Oh Kathy-wow! This is an amazing post.

  8. Profound !!!
    This post should be required reading for all. I can not begin to imagine your struggles thru the maze known as bureaucracy; loving your child as hard and as strong as you do.
    God be with you and yours.

  9. In this country of ours, especially, it should not be what it is to medically care for ourselves and especially our children. We all would do whatever it takes for our children and should not have to fight such horrid obstacles to do it. My thoughts and prayers are with you.
    vickie in kc