November 27, 2006 mcfadyena


Summer/Fall 2006. Like father, like son.

I was reminded last night, of another reason why I don’t like waiting. You forget what has become your world, you feel normal for a few seconds or minutes, and then something happens to remind you. And your heart drops. You are considering something that in a few months could end your child’s life. And that the reason you’re considering something like this is because he has a disease which could significantly shorten his life and affect his brain. When I’m calling doctors and politicians, sending out emails, and going to appointments, it’s okay. I’m fighting for my kid and doing everything I can for him. And I know and I remember. It’s funny because we’re actually doing well. We spent the weekend with friends and celebrating Avery’s first birthday. I think all of this is coming up for me because this past weekend was the first time in a while (if not the first time since February) when I wasn’t consumed with MPS. And I was able to forget for a while…


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