Yesterday afternoon, Emily casually mentioned that she would like to go to King’s Island this summer. (We went a couple years ago – in July or August before she dislocated her knee and this nightmare began. She was just brave enough then to try a couple low key coasters and loved them. She looked forward to the next trip when she could try the next round of coasters. Our lives have changed so much in the last couple years, but she still loves the idea of going to an amusement park and riding the coasters.)
I had to tell her that, with the cranial instability, she will probably never ride a roller coaster again. Horse riding will also be off limits. (Honestly, even riding in the car without her cervical collar is probably dangerous.) I had to say the words ‘it could kill you’.
Needless to say, she was not pleased with that info. She wanted to know why no one had ever told her this. Well, there was no need to mention it until now – it isn’t as though she has the opportunity to ride a roller coaster everyday. And maybe the headaches, dizziness, nausea, etc aren’t really caused by instability or maybe it isn’t as bad as we think. We just don’t know for sure and won’t until all of the scans are done. At that point the doctors will be able to say exactly what is going on and what her limitations will be. I think Dr. Tinkle is convinced that it is instability and I certainly am, but only time will tell.
It is absolutely heartbreaking to have to tell your child that something she finds enjoyable could kill her. I have had to tell her so many unpleasant things through this journey. It is getting a little old, to be honest. I wish she could just be a normal 12 yo and enjoy life, but that is not her reality – at least for now.
But, we do have hope. We have Dr. Tinkle and his people at Cincinnati Children’s Hospital, we are probably going to qualify for BCMH so we should be able to do the 2 week therapy program this summer and get all of the scans and tests we need. And surgery, if it is necessary. Without those wonderful possibilities, we would be short on hope indeed.