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When Trauma Catches Up With You as the Parent of a Child With a Rare Disease

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Laying next to my sleeping son, I hear his labored breathing and persistent, barky cough. I check in with my body, because lately, it’s the only way I can measure my anxiety.

I notice a sudden thickness in my chest, like a dark cloud of pressure sits directly on my heart. “What if there’s something more to all of this?” I ask myself.

It’s an hour before I have to bring my son in to get a blood draw. It’s something he’s done a hundred times before, but on the other side of it — the side where results lie — awaits a potential answer to a nagging feeling I’m having.

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