Chiari, You Suck

Since receiving Gabriel's chiari diagnosis, we have been on a roller coaster. This is a new "normal" we are still adjusting to and I don't know if it will ever feel like a normal day again. We were told to prepare for a surgery discussion over two months ago when we scheduled the first neurosurgery appointment. We spent several days researching and preparing to make the best decision for Gabriel.
When we went to the appointment, we were prepared emotionally for a discussion about the surgeon cutting his skull open and removing a section of his skull as well as a portion of his cerebellum. As possible as that is for parents any way. We went with the three children since we don't have a reliable babysitter right now and talked to a pediatric neurosurgeon. I, mean, seriously, these kinds of specialists shouldn't even exist. Neurosurgery and child should not be a statement anyone makes, ever.
The surgeon believed Gabriel had tethered cord syndrome and needed an MRI to determine if a tethered spinal cord was pulling his cerebellum down. He said that was a surgery that was much easier in terms of recovery and would alleviate the chiari symptoms. He has also seen autistic symptoms get better for some reason after TCS surgery. The surgery involves cutting the frayed spinal cord.
I scheduled the second MRI for a month later. I had to drive Gabriel for an early morning MRI. It was the longest 40 minutes I've spent in the car with him. He ripped my hair out of my head. He bit me. He hit me. He tried to fling himself out of the front passenger door into traffic. I don't know how we made it to the hospital but by the grace of G-d, we safely arrived.
After he hit an adult working at the hospital, I had to walk holding his hands while he screamed and cried about going to the hospital. Gabriel is 9 years old, almost 4'5" tall and 62 lbs. He is strong and smart. However, he can't communicate about what is upsetting him or how I can help him.
We made it to the elevators. I waited for the first elevator and I kid you not, another mom with her son, jumped on the elevator. She smiled at me and said, "come on, there's room." I just stared. I had tears rolling down my face because I was already emotionally exhausted and physically tired. Here was this oblivious woman asking me to join her on the elevator. Is she NUTS!!?! She repeated her statement and I had to explain that we would wait longer for the next elevator because I didn't want my son to hurt anyone.
Eventually we made our way to the MRI. I was able to get two people to help Gabriel and keep him occupied. A child life specialist we worked with brought more activities and a projector that created stars in our waiting room. The procedure went well. He woke slowly from anesthesia and we were on our way.
Andrew and Lane joined us at the hospital. Gabriel had an enormous meltdown on the way home. Andrew pulled the car over and we had to leave it in a parking lot in order for one of us to drive and the other to hold Gabriel safely. He didn't know how I managed to get to the hospital earlier that day. I am not entirely sure either. I can not effectively explain how awful his behavior was on the way home.
The results came back later that day. Gabriel does not have tethered cord syndrome. We have to keep a three month journal of his symptoms and return to discuss everything the end of July. We aren't meeting with same surgeon, but someone who works with him. Our neurosurgeon is in charge of the entire department.
A couple days ago we met with our wonderful neurologist. She informed us that our NS would like to move our appointment up almost four weeks and discuss surgery and pre-op. He wants to discuss performing surgery as early as two weeks so Gabriel has the opportunity to recover before school begins in August.
I can not stop thinking about our upcoming appointment and probable surgery. I feel helpless when considering handing my precious son over to a stranger. I can not believe that surgery won't cure his pain, only possibly help. I have to find a way to believe that this stranger can remove a portion of his skull and his brain and safely give my son back to me. That is a lot of faith and hope. As I contemplate these feelings and procedures, I eat ice cream. Lots of ice cream. Salad just doesn't cut it today as I think about brain surgery.

Here are several post-op photos from decompression surgery. These chiari warriors gave me permission to post their photos and I am grateful for their generosity.