I never dreamed that all the twists and turns of my life would bring me down the road less traveled, to here, to Rett Syndrome. I remember a boy in our neighborhood who had polio, he used braces, but he was funny and I liked him. I never gave much thought to how he must have struggled or the anguish his mother must have held within her heart. I remember the disabled adults at our school who sang Sesame Street Songs at the spring concert one year and how happy they were, but I recall feeling sorry for them, never knowing that these were the lucky ones. THE LUCKY ONES! I never ever knew growing up that there were children who couldn’t speak at all. I never even knew what a seizure was, or that children that weren’t this “high functioning” were most likely in institutions and how horrible that must have been. I was ignorant. But I do remember thinking, I’m glad I won’t have a kid like that when I grow up, it would be too sad. And then along came Katie…..
and I got a great big Gibb slap to the back of the head.
Through the years, I’ve often thought of those parents long ago and how they must have loved their children so and felt so helpless in an age when there weren’t nearly the services there are now. I cannot imagine how they did it, not one bit. I’m sure their struggle and fortitude resulted in the world Katie came into, one of more acceptance and help. But, I wonder all those years ago, did I make them sad, those disabled adults I never talked to, though I saw them every day in the school. I hurt from knowing I should have, could have just made their day with a “hi”, because I know how much it would hurt me if people didn’t talk to Katie. I think back and know now the pride in their children those parents had and the joy they felt hearing them sing. What I wouldn’t give to hear Katie sing.
Each day now that we get closer to leaving for Texas and the hope it represents, I am hit again by the staggering, heart wrenching loss of what could have been.
I will never help Katie get ready for the “real” prom, never see her get married, never hold her child in my arms. We’ll never argue because she stayed out past curfew because the boy “ran out of gas”. She never told her sister secrets in the dark under the covers when they both should have been asleep, nor covered for her so she wouldn’t get in trouble, her brother won’t ever have to give “the brother talk” to a boyfriend, and they’ll never double date. I won’t get to help her pick out a wedding dress or drive her to the airport because she just got a job on the other side of the country. And every time I see a girl her age, getting to do all the wonderful, fun things girls her age get to do, it’s like being hit with a sledge hammer over and over. And you never know when it will strike. Maybe in KMART when you see a child pick out their Halloween costume, and you know that Halloween just is no fun for your girl. Maybe it’s watching “Say Yes ToThe Dress”, knowing that will never happen, or watching girls huddle at a table somewhere and giggle over the cute new boy at school.
Poof. Gone. Never Going to Happen.
And yes, the can’s and the do’s outweigh those can’ts and wont’s, but there are times I wonder if the day will come when I can say I haven’t grieved a loss all year. That’s what I hope for parents of newly diagnosed Rett children, that one day, with help and research, they won’t ever need to grieve a loss again.