Soon after my daughter’s birth, my mother noticed that my girl was “floppy”, that she was not as strong as other babies when my mother held her. I chose to attribute this to the fact that I held my baby girl all the time and so she didn’t have to do much and could just be floppy in my arms. At nineteen months though, I did realize that something wasn’t quite right. My baby girl was not walking. She would try to get up and walk – she had all the desire – but would fall quickly. Then, I went back in my mind to all the milestones that she had reached – she was late in achieving all of them.
I quickly made an appointment to see the doctor and while waiting, I went back to when my daughter was gestating and I realized that I would have to poke her so she would move, and that there were hours of little activity. I poked her so much that she was born with a birth mark on her knee – the exact spot that I poked!!!
The doctors told me that she likely has Cerebral Palsy – I was in shock. I couldn’t imagine what that was – I mean – I knew what that was, but I couldn’t imagine what that meant to me, and her, and our family.
I went down a labyrinth of testing and doctors and neurologists and teachers and therapists and appointment after appointment. I think I was in a daze for all of them. I was going through the motions and doing what I was told but I was lost in the shuffle. All those professionals were sympathetic and they asked me how I was doing but none of them saw me and saw my anguish.
That has gone on and it still does, but I find solace in talking to people who have similar experiences. This brings me the greatest comfort of all. We started this support group because I think there are people like you who feel the same way and because we are the only ones who truly identify with each other! Hence, the birth of this support group!