I think it’s fitting, personally, that Halloween is the last day of Rett syndrome Awareness month. Some parents are rock stars… they come up with THE BEST costumes for their kids in wheelchairs, and for those with children that love going out, I’m so happy for them that they get to keep that, a piece of childhood that Rett syndrome doesn’t get to take away. But, for me, Halloween was my biggest breaking point.
I LOVED Halloween, ever since I was a kid. I LOVED coming up with costumes for my kids, sometimes store bought, sometimes home made. I was pretty darn inventive. It was so much fun heading out with all three. Their cute little …twick or tweet. Then, regression hit and just like Katie losing her skills little by little, Halloween became less and less fun.
She got anxious with the commotion of getting into costumes… so, my other two started getting dressed in their own rooms, end of special family time.
She got too big to carry… so, no going up to the door with my other children to see their happy faces when they got candy.
She became scared of the dark…so, no going out at all now. I arranged for others to take my children out or let them go with the neighbors to their Halloween fair at the church. I didn’t get to see any of it.
Then, it came. The end of it all. I decided to bring her to the mall to trick or treat. It was lit, lots of people around, food if she got hungry. Seemed optimal to me. I made her up as a clown. Just a little red nose and black eyebrows and red circles on her cheeks. Showed her herself in the mirror and she freaked and rubbed all the makeup all over until she looked like Darth Mal and screamed until I could get her into the car. Where I bawled my eyes out.
It had been my last chance, you see, to give her something normal about childhood; my last chance to have the happy memories of something normal about her childhood, something that couldn’t be taken away…but it was. Even this was taken from us, from her, from me. The realization that life truly, never ever would be normal again despite how hard I struggled against it, came upon me like a curtain falling at the end of a play that started out so full of color, music and life but ended as a tragedy.
And then the “nevers” set it… never go on a date, never go to the prom, never get married, never hold her children… never have a job, never buy a car, never go to college, never be on her own… never get a phone call, never asked advice, never tell me a sweet secret. NEVER NEVER NEVER just screamed in my mind for a very long time.
And that is grief. It will hit you at any time. Everybody’s breaking point is different. Mine is Halloween, I still cry on Halloween. It’s almost the same as if someone died and you cry on the anniversary of their death. Because, in a way, it was. The child born to me, was truly, truly gone. On that day, I had to finally break away from all the dreams I ever had for her, I had to face the truth; and the truth of Rett syndrome sucks. It hurts. It’s frightening. It’s as scary as any horror movie.
So, as I end my last post for this month. I would like to tell people who can’t comprehend our grief for a child who is still here- we love the child we have, fiercely, but we did lose a child, too, and that is who we grieve for. We celebrate the child we have, we’re lucky and we know it. But that doesn’t mean we don’t cry for the child that should have been there with that group of kids going to the prom, all dressed up, waiting to see if they would get their first real kiss, or would this be the night they fell in love, would their date actually be “the one”. So, please forgive me if come the 31st I cry myself to sleep, I’m just missing the baby girl I once had.
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