House of Cards

The last few days have reminded me that even when things seem to be going smoothly with Janey, it's all a house of cards. Monday, it felt like the start of a week where everything was falling into place. Janey went to summertime school, Freddy and William to summer programs they are in. I got a lot done, paid bills, went to the library, did laundry. The only issue was a slight pain I was feeling in my right upper leg. However, by evening, that pain was not slight, but horrible---very, very severe pain. I think I pulled a muscle when a pile of library books started to fall and I righted them by twisting around, while holding Janey's hand and her backpack and my pocketbook, taking her to the car in the morning. I couldn't sleep last night, despite everything I tried for the pain, and this morning it was obvious there was no way I could drive Janey to school. That left a problem. I could of course keep her home, but that would not let me keep my leg up. There is no sitting by relaxing when caring for Janey. You have to be ready to jump up constantly. The boys had their own places to be. And so Tony needed to stay home. It's not easy for him to miss work at his current job, but there was really no other alternative.

My leg is already feeling better, thanks to rest and ice and heat all day. But I kept reflecting on how easily it all falls apart. Of course, that's not unique to a family with an autistic child, but I do think it makes it harder. If Janey were a "normal" 7 year old, I could have kept her home and probably cared for my leg too. Or I could have called a friend to see if she could go to their house, or they could drive her. But with Janey, something like that is not a last minute thing. There are few people that can watch her, and even for those who can, they need lead time, instructions. They need to be able to help dress her, they need to know what she is prone to doing, they need to understand the huge need for handholding and constant vigilance. I can't call someone on 10 minutes notice, I couldn't take care of her myself. So it's Tony. But what if Tony was away? What if both of us got hurt, or sick? What if Tony simply couldn't take a day off? What if my leg was still bad tonight, and we needed help all week?

We'd work it out, someone. The boys would help, family would help, friends would help. But it would be hard for everyone, and more than I want to ask of people, and more than they could do for an extended time. It's truly a house of cards, with a breeze or a careless hand or a moment of not paying attention causing it all to potentially fall apart. It's scary.