With Thanksgiving behind us it seems that the holiday madness has firmly set into Rettland. It’s been a hard week for a lot of families dealing with scoliosis, seizures and the reality that growing up is different when you or your sister has Rett syndrome. We deal with this stuff all year but come December, it morphs into a new level of madness.

It is my theory that this is because magically, the day after Thanksgiving society starts screaming two messages at us all:

1. You are not enough, you do not have enough.

2. Everyone is very happy and bursting with love and joy.

Really it is insanity and it gets most normal people down. While we are a lot stronger living in Rettland, we are also more vulnerable. So when we are hit with this on top of the issues with feeding and school and staying alive on a day by day basis, it is hard, really really hard.

Earlier this week I collapsed on the floor crying my eyes out because I couldn’t think of what to cook for dinner. The fridge was empty and so was the pantry. I hadn’t cooked because my Chrone’s had me in a world of pain. The stress of the seizures from Thanksgiving had led me to lose track of space and time and suddenly it was Monday night, I was exhausted, already home before I realized the situation. At that moment figuring what to make for dinner felt like moving a mountain (truly it was as easy as microwaved rice with canned pumpkin stirred in) and it crushed me.

All week I’ve been talking with others in similar situations. I’ve talked with people not living with Rett syndrome and they feel the holiday madness as well but seem to be able to cope. I’ve talked with others dealing with things like depression, disability, grief and health challenges and it just seems like too much.

I wish I had an answer or a magic wand. I wish that all of the pain didn’t compound at years end but it often does. All I can do is keep going. I can put one foot in front of the other on days that I can. I can smile at strangers and be vulnerable and honest with those that love me. Hang in there. Only twenty some odd days to go before we resume typical insanity and I can’t wait.