Towards the end of last week, I began feeling stressed. I'm not feeling ready for this trip to Utah. At all. I don't want to go. I'm struggling with feeling that way and also knowing, or think I'm knowing, that this will be good for Samantha.
Over the past few days, I've spent about $400 on the car getting it ready to make the voyage...Utah-bound. Samantha's been struggling with sleep. And, more than that. She hasn't quite been her self. Her teacher called me yesterday. Apparently Sammy was fine in the morning, but wouldn't eat lunch, and wouldn't stand. They couldn't even get her to stand up. She seemed ok at home. She has been fussier than normal, but I look at her body and think...she just must be so uncomfortable. She is so tight. All curled up, more than ever. Her feet hurt to have her braces on because her tone has increased so much. I get a few hours a day in her braces but then we have to take them off, or they have to at school. She has pressure marks from her braces, and that's not good.
Today at physical therapy, her PT said she didn't really know what more to do to help her. All the options that they have aren't a good fit for Sammy. Botox is an option, but they don't think it's a good one for her for many reasons. Her PT then decided to measure her legs. She measured the left one longer than the right. That could be an issue, for sure. People's bodies can compensate for small differences in leg length, but Sammy's can't. Instead, she curls up more and goes further up on her toes.
When I dropped Sammy off at school, she clearly wasn't happy about walking in. Her teacher came out and we talked for a few moments. Then she said, "I don't want her to lose her ability to walk. I'm really worried about that because, well, it just is looking like that." Crush. I was crushed. I've known for a long time now that Sammy's body is changing and getting worse. But to hear her say that put into words what my fear should be. I never thought of her losing her ability to walk, but that is exactly what we're fighting against. Many kids like her are in wheelchairs, all day. I just never imagined she'd be there. Am I really in the process of watching my daughter deteriorate? Do I sound a little dramatic? Maybe. But it doesn't feel that way.
So, we're heading to therapy this weekend. And I'm going to, obviously, tell them my concerns for this session. But I have so many questions that can't be answered right now.
Do I try to do this therapy again in 6 months instead of waiting a year? If we do, how do we possibly afford that? And can I really pull the kids out of school for a month? Sammy's school really doesn't like it for a lot of reasons. How do I take 3 kids alone? My parents will be there this time, but they can't fly out again. So do I go to the place in Michigan instead? But that's WAY more expensive. What can I do that's local, more consistently, that I can really commit to doing? I can't find a program that will really work for her. Do I just pay for traditional private physical therapy?
My thoughts are going all over the place, really, and I'm so emotional about it all.
I'm usually grateful, sincerely, for Samantha and don't feel angry about her earthly condition. But, in this very moment, I'm so overwhelmed. I hate money. I hate cerebral palsy. I hate that I can't just figure it out for her and get what she needs. I hate that my 7 year old is nothing like other 7 year olds I know. I hate seizures too, by the way...and the bucket load of medication she has to take. I hate feeling sad. I hate allowing bad, unproductive thoughts to overpower my day and interfere with my life. I hate that, so honestly, it rarely happens. But, this is real, and I hate that it's real. I hate that I can't take Callie to the park today with her friends simply because I can't pull it together. And it just all feels so...miserable. Not unfair. It doesn't feel unfair to me...just miserable.
And I don't like miserable.
I have a lot of things left to do today, including having some people over for dinner...so I better buck up. And then maybe I can cry again at 7:30pm. Yeah. That'll be my plan for today.
And I'm ok with that for now, I guess.