buried

I've known I was a carrier since I was 12. So 14 years or so. I've known for so long, that I buried it so deeply that I forgot what it meant. So I was walking around thinking "no worries - you've had years to deal with this - you'll be fine by the time you want kids." But it hasn't been like that at all.

For most of my adult life, I desperately wanted to avoid having kids for other reasons - school, freedom, my career. Now I am ready to have kids, but not really any better prepared to deal with the whole carrier thing than people who just found out. But then, I feel so so lucky to have this knowledge before having a child with this disease. My mom is a carrier but didn't know until we were 8 and 10 (in other words, too late). I am realizing for the first time as I write this how different our perspectives are. I'm sure my mom, and lots of other parents of children with MD, wish they had the benefit of knowledge.

But that whole "it could be worse" way of thinking is cold comfort most of the time. It doesn't make it any easier to see my family, friends and colleagues having healthy children the "normal" way. And it doesn't change how alone I feel dealing with this most of the time. Putting yourself in someone else's shoes is a great intellectual exercise but it doesn't really change the emotional side of the equation.