In the first days after Elie was born, I’d awaken in the early morning hours and make my way half asleep into her room. Guided only by her nightlight, I’d place my hand on her stomach, the exaggerated but rhythmic elevations of her abdominal breathing serving to comfort and reassure me. There’s a medical term for this. It is not normal. It’s one of the first things the doctors look for when they suspect SMA as the diaphragm overcompensates for the weakness in the chest wall muscles. We didn’t know. She is the only baby we’ve known. But it provided us with another nickname, Elie Belly, or just Belly. What was once a source of amusement has now become an area of intense focus and concern. Over time her ability to breathe will decline. We know this. For now we watch and we wait.

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