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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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Blog Archive
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2009
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May
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- Tennessee Vacation
- Vacation winding down
- Trip to New Orleans
- Race-n-Roll 2009: A five-year old child's race
- More singing with Daddy
- SMA IS JUST HORRIBLE!
- Jojo and Mommy
- First Veggies from Daddy's Spring Garden
- Mother's Day Weekend
- Rainy Sunday
- Saturday: A Glimpse of a Well-day
- A look-back: CureSMA Race-n-Roll 2008
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May
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Way to go Jojo, you are a great little singer.
ReplyDeleteMaria, Jojo has such expression in those big brown eyes of his.
oh my gosh I LOVE IT!!!!! Jojo you are an amzing little man, I love to hear your voice, I wish I could teach Sky that song (its one of my favs) Have a great day hugs and loves Sheila
ReplyDeleteHi Maria, that tray in the pics is the one I made for Junior. Abilitations prototype version is a little different and I like Junior's better. They are going to change theirs and then we will try it out again.
ReplyDeleteHey, JoJo... you did a very good job with that song.. Benjamin and I just loved it...
ReplyDelete