genetic disorder

When genetics make adoption even more complicated

Recently, I’ve talked a bit about this pregnancy, and the genetic disorder I share with my 2 sons, and potentially this baby as well. What I haven’t talked about yet, is my 8 year old. My birth son. Each child I have, I learned, has a 50/50 chance of inheriting this brutal disease. We know …

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When religion/faith and trauma don’t quite mix

Maybe I should warn you now, this post might be one you disagree with, or not understand, and that’s okay. I’m aware I’m probably in the minority with my feelings, but that’s okay too. I don’t talk about religion or God much or anything like that. Usually, I avoid the topic at all costs. The …

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Today is not the worst, and I consider that a success.

Today, simply put, is not the worst. Pregnancy mixed with my less than stellar heart caused me to feel really sick and pass out this morning, but other than that…it is not the worst day. I had some intense anxiety when I woke up this morning, but I managed it. I’m trying so hard not …

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When strength is the only choice you have

Right now, we are on our way to the childrens hospital 2 hours from us where both of my children are regularly seen. They have their “big”appointment today, neuromuscular. This is the doctor who diagnosed all of us and has been sort of the leader in their care. She’s the top neuromuscular doctor in the …

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A gentle reminder that my life isn’t “normal”

My son had his 3 year visit with his pediatrician this morning. The appointments that, for typical kids, might last 15 or 20 minutes, takes us an hour to complete. I hate these yearly visits. It’s a brutal reminder of just how….abnormal my life is. When I always seem to convince myself to forget. I …

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