What we've gained

When #1 was born and diagnosed with hemophilia we did not feel that "God only gives you as much as you can handle". We did not feel that "God gives special children to special people". And really, we still don't feel that way. Shit happens.

BUT

There are about a million and 1 cool things that we've gotten to do because they have hemophilia. We've met people from all over the world and traveled to several states. The boys go to this really cool camp that is way cooler than any camp we would be able to send them to if they didn't have a bleeding disorder.

We did an ad campaign for a company and the boys got to see their faces in a magazine. We did an interview for a t.v. station and they saw themselves on t.v. I went to a fancy black tie ball and gave a speech.

In the next two weeks we're doing a couple more interesting hemophilia-related activities. But the boys are getting kind of "whatever" about the whole thing. I tell them that these things are going to help other families not freak out about having children with a bleeding disorder. They understand that they have it pretty easy, as far as hemophilia goes, so they go along with me.

But I'm thinking that in the not too very distant future I'm going to have to start asking their permission before I agree to some of these things. #2 says he's shy and doesn't want to talk. #1 says "Don't be cheesey, Mom".

It's strange watching them grow up and assimilate their bleeding disorder into their maturing lives. It's actually more like they DON'T have to assimilate it because it just is there. It's become sort of "what's the big deal?" All these years we made their self-care just part of their everyday lives...and now it really is.

I told #2 to do his poke the other day. He got all his stuff ready and then complained that he didn't want to have to do it himself. He said "Why do I have to do it myself" and I said something snippy like "it's not MY poke...that's why you do it yourself". To an outsider that would probably sound really, really mean and uncaring. But this is what we've been working towards.

If I'm going to take that tack with them...that it's THEIR bleeding disorder then I'd better honor that sentiment across the board. It's THEIR bleeding disorder and they can chose when and where they want to talk about it!

We're getting to a time when my involvement with the hemophilia community and their involvment will be two different things. They like going to meetings and meeting other kids and adults. I like talking to new families and easing their minds and teaching new families how to advocate. I hope that my kids will remain active in the bleeding disorders community, but I guess it is THEIR bleeding disorder and they'll find their own way to be a part of the community.