Tuesday, August 21, 2007

Too Good to be True?

Whenever I share my perception...OUR perception...of how the boys are doing and what life is like with hemophilia, it feels strange. It feels like people think I'm making it up. I know a few other families who have kids who seem to be well adjusted like mine but there are far more who struggle.

My kids self infuse and have self-infused since age 8 and 7. They wear medical bracelets and have since birth. They share openly with their peers, adults and others about hemophilia. They have never "faked" a bleed (knock on wood). They don't have joint bleeds. They don't have breakthrough bleeds.

We have left them with babysitters, family and friends for extended periods without incident. We have taken them on several trips and never had a problem.

I dunno. Sometimes it seems too good to be true. And I feel like I'm going to jinx us if I say it out loud. But then I have to remember what I've forgotten. All the shitty ER visits. Facing off with the hematologist about starting prophy. Transitioning from port pokes to arm pokes to self infusion. Driving 1200 miles so they could go to a camp we felt confident in.

And then there's the whole moving from one state to another. But a lot of that stuff caused my husband and I grief, hopefully not so much the kids (except the move). I'd like to think the boys have remained relatively unscathed. Unusual senses of humor? Twisted? Too big for their britches? Oh, sure. But that's not hemophilia related. That's just us! :)

We do...each and every one of us...know exactly how fortunate we are that things are manageable. We've met people in far worse situations. That's a good thing because it makes us chuckle when others (clotters - as a commenter wrote) say "Oh my goodness, that must be so hard.

I suppose there's always my idea for a new "savings plan" for the family. I think parents should be able to pre-pay their kids' therapy. This way, if I have to do something (on purpose or on "accident") that may mentally scar them, I can just deposit an extra $50 in their therapy accounts to make up for it.

Tax-free therapy. I'm thinking it's the wave of the future.

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