What an amazing date. But it does not really signify anything for us. Except, in two days, Joseph's Tita (Aunt) Leah - my sister- will be a year older; and in twelve days we're going on a trip somewhere magical. Joseph is excited about this trip. And he is equally excited about Halloween. So, we decided that he should have a taste of both on 10-10-10. Please note that Joseph is wearing a ninja costume and not a nijab ( I can just hear him hollering "Take it off! Take it off" if someone even suggests that he's wearing what women in other cultures wear.)
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.