Then it made me think back of playing in piles of dry leaves we had raked from under a couple of large regal maple trees in my backyard. We’d arch high on swings and eject ourselves into the thick heaps, scattering crumpled brown leaves into the wind. Then we’d bury ourselves under them and hide, waiting for my father to find us. I’ve never done that with Calvin. Likely never will.
My mind continued to reel with images of all the playful games and silly larks I might be engaging in with my seven year old son, if only he were healthy, normal, could stand up and walk by himself, could understand humor and silliness in that way. And though I grieve daily—will always grieve—the absence of these millions of subtle gestures, these playful moments between a mother and her child, I am grateful for the fact that Calvin relishes tickles and kisses and hugs. At least I have that—for now.
But I’ll forever be missing the chance to cartwheel and somersault in the grass with Calvin, see him sled down a hill or climb a tree, ride bikes with him, play in the sprinkler and build glorious sandcastles at the beach.
|photo by Michael Kolster|
I just read your blog. I've got the link recommended by a group on facebook of the woman you met in ice cream shop. After I read it I could not help but write. I had no goal to write you other than if it's any consolation, you're not alone. My wife and I have a son with the same syndrome (MeCP2 Ducplication Syndrome), he is 9 years old and a very charming guy, also with some challenges around the move and on the whole moving of his lems. Seizures, he has had one about 2 months ago, so maybe we're now in the "later" stage now (A bit scary).
It was a pleasure reading your blog and I can 100% put myself in how you feel. To your statement about "only" having one child that carries a disease, it is something we tried for 5 years. We chose, in spite of all doctors' warnings to have a child again. We did not realize at the time what our first boy's diagnosis was, and that it was an inherited gene defect. We luckily got a great boy, now 4 years and no other "problems" than normal boys his age.
thank you for your comment. i am glad you were able to have a healthy child. we were too nervous and busy to have another child, plus take attention away from calvin. both my husband and i were 40 when we had calvin so we were also risking having a child with down syndrome. you might be interested in my posts "healthy child" and "envy."
take care, christy