Joseph and His Family: Life with SMA: mohawk

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Thursday, July 23, 2009

It Takes a Family to Cut the Hair

Not surprisingly, Nana, Ms. Frances (Jojo's caregiver), and even Daddy do not particularly care for Jojo's current 'do. Austin and I think it's cute. Well, it will all be shaved on Saturday.

Living with Spinal Muscular Atrophy

This is a snap shot of our life with Spinal Muscular Atrophy. After we found out that our son Joseph (Jojo) had SMA, we grieved. We grieved for all the motor milestones that he would never meet, and for the life that we dreamed and visualized for him. It is tragic to see our child not being able to move much, and then to watch as he progressively loses even those minimal movements and skills that he was born with. But we learn to adjust and keep the focus away from our grief. Because really, he is not fundamentally different from kids his own age: he learns stuff, he knows what he wants, he rationalizes, he whines and occasionally throws a tantrum, and he knows how to wrap his Mom and especially his Dad around his little finger.

Joseph and His Family: Life with SMA

Thursday, July 23, 2009

It Takes a Family to Cut the Hair

Living with Spinal Muscular Atrophy

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