Tuesday, July 17, 2007

Overkill? Underkill?

Just got a new issue of Hemaware. The magazine of the National Hemophilia Foundation. There were several items about protective clothing, helmets, padding, etc. It seems that things have moved backwards since the boys were young. No fancy clothes or dorky looking helmets for us. It just wasn't us. We considered it. Even tried the helmet once, but the strap made a bruise on the chin. Once we cut off the foot of a baby sock and slid it up over a knee when there was a bruise and it looked uncomfortable when #2 was crawling. But overall, I thought these guys were going to have a hard enough time as it was, I didn't need to draw attention to the situation any further by putting a goofy helmet on or cumbersome pants. If black is beautiful, so is black and blue...and purple. Yellow and green are even more beautiful - where bruises are concerned (that means they are healing).

Did the boys have bruises? Heck yeah. Did they bump their heads, heck yeah. Did people stare at the grocery store? You bet. And it bothered me. I got over it. My kids didn't notice the stares...they were too busy raising hell in the candy aisle!

I don't know. Pretty quickly after son #1 was born, we read all we could and decided that we wanted to do preventative treatments (prophylaxis) instead of waiting for a bump or bleed and THEN infusing. We started prophy as soon as we could.

And the reason we started as soon as we could was so the boys could grow up leading normal lives.

And there it is...that word. NORMAL. Some of the older members of the community rail against us parents who use that word. They think we are deluding ourselves by thinking our kids will be normal. I use that word in it's loosest sense.

It's not normal to have to poke your arm and infuse $10,000 worth of medicine twice a week. It's not normal to have a closet full of syringes, needles, saline, and biohazardous waste. It's not normal to be 5 years old and have scars on your chest from surgery to place a foreign object in your body. It's not normal to have parents, friends and family freak out when you climb to the highest branch of a tree...oh wait, maybe that is normal.

Our goal was to give these boys every chance in the world to live a happy, fulfilling, and well rounded lives with as little interference from hemophilia as possible. So far so good.

But about all the padding, helmets and other over-the-top precautions. Those things are more for the parents than the kid. These kids are going to have to poke and poke and poke themselves. Maybe I'm cruel, but I figure the sooner they get used to it and make it a normal part of their lives, the better.

And besides, Murphy's Laws of Hemophilia dictate that the child's forehead with make contact with the one corner you missed.

1 comment:

mama o' the matrices said...

You told me so, years ago. And *damn* if it's not true.