Saturday, November 6, 2010
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Jojo at 6 mos. old
I miss the smile ;(
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.
Jojo at 6 mos. old
I miss the smile ;(
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