Diagnosis Week is the week following getting the news that your child has __________ syndrome/disease/disability. It's the week that your world is turned upside because you're forced to face whatever fears you've kept in the dark recesses of your mind. Your fears now have a name. In my case, it was autism.
What most people don't understand is that you're in mourning. You're mourning the death of a imaginary child; one you've carried around in your head and heart. A child whose life you've planned since before their birth, possibly before their conception. A child that you've watched grow up, become the best and brightest, go to college, marry and give you grandchildren. All of the hopes and dreams you've pinned on that child have now cruelly been snatched away. And what's worse is that you are reminded of those hopes and dreams every time you look at that child. And it hurts... it hurts so much.
After Myriam's diagnosis I couldn't be around my friends' children for months. I didn't really even leave the house. Because every time I saw a "normal" child doing "normal" things it cut me to my soul. My child isn't doing those things and maybe never will. I hated those "normal" children and I hated my friends for having them. I couldn't stand to listen to their blathering about how hard parenting was and how tired they were. More so, I hated their pity and I lashed out at them for it.
If you take nothing else from this post please, PLEASE, when your friend comes to you with news like this don't ever tell them you understand, because you can't, everyone's journey is different.
I was lucky. When my mourning period was over, my friends were still there. They were waiting for me. They still loved me. I have wonderful friends.
What I've learned about Diagnosis Week is that the first week is horrible and you will go crazy and you'll stay crazy for about six months. In that time your heart will break, many, many times over and you'll find strength in anger. You'll curse the heavens
It's just a word, a label--that doesn't define your child. It doesn't change who your child is. Nor does it change the fact that you've lived with this child all this time without needing that label. That diagnosis that changed everything six months ago means nothing today. The details of my dreams for my child may have changed but the big picture is still the same; I want her to grow up to be healthy and happy and a diagnosis can't change that.