I am struggling lately. I feel depressed. Defeated. My emotions and thoughts are all over the place. I feel like I am constantly contradicting myself. For example, I feel the need to explain myself because my friends might be worried about me. I’ve been quieter. Less fun. Less Liz. On the other hand, I really don’t give a crap what people think because no one will understand anyway. I’m sure there are a lot of parents of kids with special needs who feel the same way… at least I hope so… so I’m not alone.
Something that I’ve always struggled with is the contradiction between being a champion of the cause, a spokesperson, a tiger mom if you will, for the benefit of all children with special needs and the urge to crawl into a hole and shut the world out. Some days I want to show everyone how great Ryan is, how far she’s come, and although no one will ever really understand our life with her, I want to shout from the rooftops that although being her mother is the hardest thing we have ever experienced, it is also the best. On other days, I just want to tell everyone to mind their own business and leave us alone. I’m caught between love us and go away.
Our most recent struggle is Ryan’s schedule at school. We are just finishing the first quarter of the year, and there has only been 1 week out of 9 where she has gone every single day for the full day. 7 hours from bus ride to bus ride is a really long day for her because she fatigues more than the typical kid (probably because of her CP). She comes home, plays a little, takes a break with a show or iPad, and then at the dinner table she is practically falling asleep. Some nights it’s a struggle to get her a bath and in bed fast enough. I know the transition from Kindergarten to 1st grade is hard on most kids, but with Ryan, after a couple long days she gets overtired and actually can’t sleep. Many days she has woken up at 4:00 or 5:00 a.m. so she will go to school but has to get picked up early to get a nap. If Ryan doesn’t get enough sleep she won’t eat. If she doesn’t sleep or eat she’ll get sick. We have to be really careful. We met with her teacher and adjusted her schedule to try to make the most of her day even if she has to leave early. But just recently she has paired those issues with behaviors such as refusing to get on the bus and not wanting to go school altogether. We are now considering adjusting her schedule again so she doesn’t have to go full day. So there’s another contradiction: more school = more learning (and she is learning A TON) yet more school = more fatigue. More fatigue = more sickness yet napping every day = not pushing her to her full potential. Or does it? I really don’t know.
I’m sure we’ll figure something out. We always do. Put out one fire and two more pop up. In the meantime I’ll be here like: