I saw a sign the other day. It said something like "there's 3 options to any situation. Accept it, Leave it, or Change it. If you can't accept the situation, change it, if you can't change it, leave it." This is so true in so many aspects and really hit home with me. My family and I have been dealing with a situation for a couple years now. Something is constantly happening on this subject that when I try to talk about it, I swear I can hear eye rolls or people banging their heads against a wall in my support group wondering why I don't leave it. To be honest, I would LOVE to, but when it involves my kids, I can't give up the fight. So with this blog post, I need to explain why after 2 years I still fight.
Connor couldn't wait to go to school. He is the youngest in our family and always heard the other kids talking about school. When he was in pre-k, his goal was to get to the school with the "big green roof". That's where sissy went, and his cousins. When he finally got to that school for kindergarten, his new goal became to eat lunch at the school, since kindy only went half a day. This year he has accomplished that goal and loves it. His teacher, who is an absolute sweetheart, told me the class knows about his CU and why he misses so much school. In the mornings they check the weather to see if Connor will be there. When Connor can, the class celebrates when he walks in.
Taylor is looking forward to her goal happening this coming school year. She will be in middle school and she is seriously excited about having a locker. To her, her 5th grade year is a hurdle that she must get through to get to her goal. I swear that she may hear the angles singing as she pictures it in her head, but there is nothing that will keep her from that locker.
Those are the reasons I fight. Those are the reasons that I don't give up, march them out of school, and celebrate that they will never go back. Those goals mean something to my children, and I need to help them get to those goals. Why should they have to give up something that means so much to them because some yahoo is on a power trip and wants to have access to all past and future doctor's records, tests, or anything else they deem necessary at anytime? Why do my kids have to suffer because my husband and I along with the doctors and advocates I have talked to believe that what they want is none of their business?. With the paperwork that has been signed by the allergist they can call him anytime and ask questions to get information, they don't need a medical release for that,
I think what is really disheartening to me is that this behavior would not be tolerated on other well known conditions, but why is it with CU?