… you have explained to strangers that your baby did not break both his legs; he’s in casts for a different reason.
… you have walked out of doctors’ offices after hearing, “Caudal what?”
… you have imagined having your child’s legs removed to improve his quality of life.
… you know the names of several different methods of treating constipation—and how to use them.
… you have battled with neurosurgeons, urologists, and orthopedic surgeons and not let up until you got answers.
… you are best friends with the woman who does the referrals at the pediatrician’s office.
… you notice that half the hospital staff knows your child’s name.
… you have been frustrated trying to find pants that fit your child. And forget about the shoes! :)
… you have spent the day on the phone with the insurance company, the night standing next to your child’s bed after surgery, and the middle of the night wondering if it’s all your fault.
… you know the difference between an HKAFO, a KAFO, and an AFO and kind of get the difference between CRS and SA.
… you have shopped for stickers to put on a walker or crutches.
… you can be casual when talking about your child’s underformed spine, curved spine, or dislocated hips.
… you let your child walk with crutches knowing his hips are not in the sockets, let him walk on his hands knowing his spine is misaligned, and let him do stunts balancing on his walker or wheelchair that take your breath away.
… you have told relatives no, not all children potty train the “regular way.”
… you have worried that your child would be made fun of at school but then see how sociable and friendly she is and think maybe it will all be okay.
… you know all the best features in a wheelchair or forearm crutches or a walker.
... you have a whole stock of Velcro and shoe inserts in all different colors.
… you have cried your eyes out from sheer joy when your child crawled for the first time using only his arms, took one step with her walker, or walked on his hands.
… you have watched miracle upon miracle unfold before your eyes with a hilarious, active, creative, beautiful, and wonderful child, and you wouldn’t change him for the world.
Friday, August 29, 2008
Thursday, August 28, 2008
I saw this story about a 19-year-old girl, Miracle Buckley, who has CRS/SA. She is studying to be a concert pianist. She says, “I would say there is a testimony to my name because somebody in my condition is not supposed to be here.”