Diagnosis Week

     One of my friends is smack in the middle of a really rough several months. I remember that period of time and it sucked! Today I'm going to try and explain something that parents of neuro-typical children don't understand. Something that I frankly, hope you never have to go through, the hell of Diagnosis Week.
     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.

     That week you will cry more than you ever thought possible, privately and away from pity-filled eyes. That week you will reject all forms of help as intrusions and anger will dominate your vision. You may spew this venom at those you love the most; I did. And you will wear a badge on your chest that proclaims that you can't be helped by anyone, because they don't know the torment you feel, because their children had the audacity to be born "normal".
     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. And never, ever compare this with you're kid's peanut/soy/milk allergy or seasonal asthma. Because when you do that you not only marginalize your friends feelings you look like a big, fat, ass. When in doubt, say nothing.
     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. Except for that one, and I wasn't her biggest fan anyway.

     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 ok, God can take it and your tears will flood the oceans. But eventually you will say goodbye to that imaginary child and it won't hurt quite so much when you next think about her. In fact, one day an amazing thought will occur to you, out of the blue! That diagnosis that took so long and you fought so hard to get... that diagnosis that rocked your world, tested your faith and left you a broken shell... it means nothing.
     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.

Peace Out!
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