Wednesday, February 23, 2011

Hard Work

I have to tell you guys, asking for help is hard work.

I don't do it much. Probably because it's so darned hard. It isn't just the asking - though, that's pretty difficult - it's the balance you need to maintain and the waiting, and the letting go of the outcome part that hangs me up, I think.

The whole van thing's been coming on for years. The knowledge that someday Kam would be huge, and that I wouldn't be able to keep transferring him has been hidden in the back of my head, crammed in with a bunch of other "things to think about later" thoughts. I've had back and neck problems for years (not just from lifting him, but that's where my stress sits - like most everyone's does). And anyone who knows me has heard me talk about it for a long time, too.

But it's one of those things you just don't bring to the front burner because you really have no idea how to address it. Money's been an issue for quite awhile - though I probably could have saved enough for a decent used van by now if I'd been diligent - but something else always seemed more important. So, I waited. I delayed. I procrastinated.

Then came the surgery. Talk about eye-opening. I'd resigned myself to being home with him the entire six weeks he was in the spica cast. He was just too wide and heavy. He'd NEVER fit in my car, and barely fit in the rented wheelchair. So, that I was okay with. But when he came out of the cast on November 8th, I must have imagined he would rehab for a bit and then be all better, bearing weight on his legs and helping with transfers, like he was before.


He was in more pain then I'd ever seen him in, and he's been in a lot of pain over his short life. Oxy-codone pain; pain so bad it made him throw up. Serious pain. But this cast removal post-op recovery thing put him in a tailspin, and me too. Physically, he was as weak as a newborn, but weighing 114 pounds. He cried every time I touched him: doing his range of motion (exercises to stretch him and get his muscles back - 3x a day) or moving him from any spot to any other (like from the bed to the wheelchair or the commode or the tub). It was horrible.

It took two people (a part time care provider and me) to get him in and out of my car. One of us (me) inside the thing pulling him up into the seat, and one on the outside trying to get his hips up over the side of the car, him crying all the while. More horribleness.

Somewhere in this nightmarish time, I started really jonesing (old addict-speak for serious craving) for a van. All I could think about was how much easier our lives would be if we could just roll him onto a lift and strap his chair down and drive away.

I fantasize about it. It would be safe to say that I'm almost obsessed with it.

Now, that's not a good thing. It's skewed this whole fund-raising process. When we are obsessed, everything gets filtered through that obsession. My self-worth is getting tangled up in whether or not any money comes in.

Here's some of what I've done: I tweeted every major person who "helps" I could think of; went on the Special Needs sites and blogs; emailed and tweeted local news stations and people; called and emailed local associations that help adopted, special needs and foster children, DSHS people, Van dealers, local and national, Kam's therapists (past and present); churches, every friend of mine I could think, I've opened an Etsy shop (online craft selling) and am making hats and scarves every night when I watch TV. I can't think of more to do.

But it's very very slow going. And, that's probably okay. I have never tried to fund-raise before, I don't have a paradigm for how it should go.

For me, though, it takes a lot of time I don't really have. And I'm getting really tired. Trying to raise this van $ is just one more huge job in a life crammed full of huge jobs. I apologize here, I'm sliding into self-pity, and I HATE self-pity. I haven't blogged in quite awhile, and part of the reason is I can't come up with any happy, hope-filled topics. I'm just getting worn down by the daily struggles - and don't know what to do about it. The Bible says, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." Proverbs 13:12

I am really fighting against this slide into hopelessness. But it seems like I've been fighting for, well, for my whole life, and I'm wearing out. So, please pray with and for me. If we don't get the van, I guess we just don't get it, and we'll adjust. I'll try to keep saving and making my little crafts; I'm finally submitting some stuff for possible publication, too - maybe that will "work." But in the mean time, I need to get my darned chin up off the freaking floor and do more than just make it through each day. I need to get some of that "life" stuff flowing.

As I wait for Ellen to call.

Thanks for your patience, everyone.

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