The Dark Days No One Sees

Sometimes a crash looks like this. A few sniffles and an immune system running wild.

Hyrum rarely complains or rarely mentions the pain daily pain. But this week, the usual pain kept intensifying. This twelve year old boy who daily nemesis--pain--could not take it anymore. He felt like his head would explode. He couldn't walk, he could barely move. The normal pain meds weren't doing much. I piggybacked him out of the house and today was grateful for the wheelchair to carry him the rest of the way.

The doctor was at a lost of how to help him. We have been here before. Too many befores. They did some test that all come back clear once again. The final conclusion was that is was a migraine. They give him a little bit stronger pain meds for today and send him on his way. The migraine lasts four days. The freefall into a major setback goes on for weeks. The rest of the school year is not happening.

This are the days no one understands and no one sees. They see the boy who is helpful, silly, who loves playing video and hanging out with friends. We walk alone through the days full of pain, the days full of fatigue, the endless cycles of setbacks and recovery. I use to think if people actually saw more of these days they would understand and the compassion would come. I have come to understand that this type of compassion escapes most people. So we will continue to navigate these endless cycles. Watching and reading for new research. Listening to other stories of what has been helping them. Hoping for a day when there is healing, more knowledge and maybe even a cure. We will keep moving forward until then.