Derek and I were talking about how much our plans changed over the course of Harris' first 12 months. If you would have told me that by the time he turned one I would be infusing my baby on our coffee table three times a week, I would have asked you to hand over your keys.
It may seem counter intuitive, but I cannot express how lucky I think my son is. This morning I was able to access his port, infuse him to some of his favorite music while his dad held him and then pop him right into a warm bubble bath. His crying and escape attempts are subsiding substantially - he hardly fussed at all today, and I have every hope that the routine will be less and less dramatic with each infusion.
As I was wrapping him up in a big old bath towel, I thought about how amazed my father would be at the advances in care for those with this condition. If he were alive, my dad would've been 60 years old in May. There was not even an effective treatment when he was a child. He did not have the luxury of good joint health, or instant relief from the pain of an active bleed. In the end, the miracle treatment led to an early death. (Which I'm still a little pissed about.)
I do not have a memory of him that doesn't include a wheelchair (although I've seen pictures with him on crutches. It's a little weird to me.), but it has never crossed my mind that my son might someday lose the use of his legs due to joint damage. 60 years can make all the difference in the world, I guess.
I have learned that in hemophilia, and in life, the choices you get aren't always the choices you pictured yourself having to make. Sometimes that means choosing the least crummy of all the crummy options... and sometimes you can end up believing that the option that scared you the most has become the biggest blessing of your life.
Happy birthday little man. Next up - soccer.
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