October 1999 – Emily is just over 15 months old and we finally have a diagnosis…. She has something called the Cri du Chat syndrome. Back in 1999, there isn’t much of anything out there for us to find information… It is hard to believe that all this was before facebook!
I remember sitting in the genetic counsellor’s office and listening to what our life was going to be….. All the information coming straight from what seem to be a giant book of everything a doctor needs to know….. just between us, I really dislike that book!
….. your daughter will never walk, talk, recognize you, understand you or show emotions. She will be fed by tube as she will not be able to eat enough to grow properly. Your child will be in her own world, in a wheelchair, fed by tube…. The “good luck” was not said but we felt it!
I remember telling the genetic counselor that Emily could recognize us, that she recognized voices and that when her dad or I entered a room, she was looking for us. Her head, the only part of her body she seemed to control, would be turning around looking for us. She didn’t do that for strangers….
The answer from the genetic counselor was harsh…. You want to believe she is recognizing you but in reality she isn’t… your daughter can’t do that.
It wasn’t my imagination! She knew us! She also knew her babysitter and she loved us, in her own way!
Over the days, weeks, months and years following her diagnosis, I held on tight to the fact that Emily could recognized us! If she could do that, what else would she be able to do?
I didn’t care what was in that book, I was going to give my child the best life she could ever have and I was going to make sure that she kept recognizing us and that slowly other milestones would be cross off the list…
When you are faced with bad news, what keeps you going?