7 years ago today we took him to Lurie Children’s Hospital through the ER. We were told to do so or he would die. We gave him morphine before we left and it didn’t touch the pain. I took this video. I watched in desperation many times before this time. Many nights and days void with ease as he would pace and cry and scream and beg me to make it stop. He said it was like lightning hitting his buttocks. Like he was being punched 500 times be said. It. Was. Awful. And he had been suffering for months with it. I felt the video was necessary to show the truth. To show I wasn’t crazy. To show how awful it truly was. I got ridiculed for it. But even more I got supported for it. Soon. We would know why…..kind of. We would have a team of docs backing us up and taking care of him. Not just me searching relentlessly for help. Soon he would be in that 2.5 hour MRI and the results would not only change our lives forever but save his. Save his life with emergency shunt surgery and find the tumors in his brain and spine. Soon treatment would being along with pain management of heavy narcotics. Fear would sit with us as we waited for those results. And it has never left. Anger and sadness would grow inside me like it’s own tumor. 7 years. 7 years later here I am sitting up with him with esophageal spasms for me that are wicked painful and him with pain in his legs. The pain changed but still remains. For us all. 7 years since the beginning of our walk through hell. A living nightmare. This one is always hard.

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

Adler