special needs

Freedom looks different on all of us

Here in good ole America, it’s the 4th of July. A day you celebrate independence and freedom…or whatever. Current thoughts on that aside…yesterday, I was watching my son and really thinking about what that means, what independence means. I was watching my 5 year old son play outside yesterday and he started getting frustrated and …

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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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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 your fears remind you of your childrens strength

Right now, I am sitting in the heart hospital for an echo and a few other tests. As I was walking in, I felt nervous and uneasy. And kind of afraid. My 2 children and I have a severe genetic disorder, and one of the things it causes is cardiomyopathy. We are all at very …

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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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