The Mom Chronicles

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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Innocence

This morning, I asked my 5 year old son “what would you do if you could plan a perfect day?” He smiled, not really sure why I was asking him, and threw the question back at me. “Hmm, well, I don’t know. What do you think?“ I told him I didn’t know. That he would …

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