I’m sitting at the bottom of the stairs crying, holding grace who is nearing the one hour mark of screaming, crying, throwing her body around in my arms. There’s nowhere else I can go. I can’t take her into the warm sunshine of the back garden because all the neighbours have their doors open. The boys are in the front room having a nervous breakdown from the ear piercing screams. I can’t justify a back breaking trip upstairs simply to sit in a chair. I’ll do my useless comforting at the bottom of the stairs thankyouverymuch.

I despise these screaming hours. I’m totally helpless, completely useless to help her. I can’t hold her standing up because she doesn’t wrap her legs around me. She just hangs there, breaking my back.

I do what any parent with a voiceless newborn would do. I run through the check list. Hunger, dirty diaper…I have no clue what’s wrong with her. She’s had all her meds today. Has she had a poo? I try to think past the screams {which have now muffled my hearing} to remember the last time she had a poo. Has it really been so long that I can’t even remember? Could Steven have changed a poo diaper that I don’t know about? Yes that’s it…she must be constipated! Even still, there’s nothing I can do about it but hold her while she gives birth to her gigantic poo.

The poo never comes. She cries herself to sleep in my arms and before I know it, I’m sleeping too.

These times baffle me. While they’re happening, I swear that I won’t ever let it happen again. Next time, I’ll definitely know what she needs. I tell myself that there won’t even BE a next time because this surely can’t continue. And then a day or two goes by and it becomes a blur. I question if it was even as traumatizing at I thought it was. I think I must have been overreacting to have cried and screamed, too…I think that she must be totally fine…I’m just making it seem worse in my head. But then the next one hits and it’s even more pain filled than the last. And suddenly, I find myself again, hiding away in a safe corner of the house holding my giant, ridged, screaming toddler who has no voice to tell me what is wrong.

Rett Syndrome, you suck. I just wanted you to know.