Grief

Thursday, November 17, 2016

(a post I wrote in one of my PANDAS/PANS support groups last night)

Grief. It has crept out of the recesses of my mind where memories of her childhood have been quietly packed away. It's been weeks of "relative" calm since we got her most horrid flare under control. But it just keeps taunting us, the OCD, the sensory, the indecision and agitation.

Days of remarkable recovery when she is just a typical 7yo child and my heart overflows. We have figured it out, it's okay now. It's going to be okay. I just watch her and am so filled with gratitude. Then, that moment of recognition when I see a glimpse of it return. A chair that isn't quite straight, couch pillows haunting the periphery of her vision that must be removed immediately, and the agonizingly painful process of trying to get her dressed in the morning because she can't decide which outfit to wear and because non of her clothes feel good on her body.

The photos of years past, when it was all beginning and I had no idea. This silent enemy was taking hold but I thought she was just going through something, just a sensitive child. That 3yo photo we just found...that dress was the only one she could wear, the crocks bc nothing felt good on her feet, and the braid in her hair....I remember that braid because I was anxiously making it as loose as possible so she wouldn't cry and rip it out. I just wanted her to be a happy, healthy little girl on her birthday.

Tonight she had symptoms again. Not severe, but enough to create some stress in both of us.  "I'm tired of being different Mommy. (Starts to cry and I pick her up.) There are 21 kids in my class and none of them have these problems. They can all get dressed. I don't want to be different. It's so hard." My heart shatters a million times over.

She is tired.  I am tired. I am sad. I am lonely. I am angry. I am frightened. I am thankful because I know it could be worse and I am terrified because I know it could get worse.  We've only been at this since January but now I see the years stretching out before us. I don't want this for her. I can't have this for her. This can't be.

But I picked her up and held her and told her she is special and strong, and has so much to offer the world.  I reminded her that we walk in the sunshine and practice gratitude even when it's hard.  I hugged her and told her I get tired too but that we are in this together and she will be okay. It will get better. She will get better and better...look how far you've come already my love.

Grief. There is no other word to describe it. Simple grief.  I saw a counselor for myself today because I've got to get myself support from somewhere. I will handle this and I will carry this and I will carry her every step of the way, but I need just a little support. Just a little corner to let the grief out.  Thank you for being here, for being in it with me.