I've been learning how to infuse Jaxon peripherally (through his hand and arm veins) over the last few weeks. It's pretty tricky, but Jaxon has been amazing, not complaining and even being exciting about practicing on fake plastic veins. (He wants to practice on me, too. I haven't let him yet, but maybe I should)
So today, Jaxon looks down at his arm in the tourniquet and is probably just beginning to understand that he has to do this three times a week for the rest of his life.
He looks up at me and says, "Mom, I wish I didn't have hemophilia."
In my heart, I cried. I know, Honey, so do I. In this moment, Jaxon articulated what I have been feeling for seven and a half years. Up until now, he's hardly been aware of his bleeding disorder or it's impact on his life. He's a very healthy boy and hemophilia only affects his life 5% of the time. But, here we are in the 5% and it's still something that holds him back, that makes him feel different, that could potentially kill him. I knew there would be a time when he said this to me, but it still broke my heart.
So in my most cheerful voice I said, "Yep. But you have it. That's how things are. I wish I didn't have these dark circles under my eyes. That's why I wear make-up. You have hemophilia and you get this medicine to fix it."
Okay, so it sounds pretty lame now that I've written it out. But, I don't want him to think it's okay to feel sorry for himself.
I can do that well enough for the both of us.
