I took this photo the day we came home from he hospital. This was The beginning of July 2013. He couldn’t even walk on his own. He drooled and fell over his walker when he tried to use it. He choked on a lot of his food because of his weak neck muscles. The massive brain damage had really stopped the brain from telling the muscles when to move and that they could be strong. It is hard to understand. The brain tells the muscles how strong to be and what order to contract and expand. If the brain is damaged and can’t tell the muscles to be strong or react in the correct order to walk, then you fall over. If the brain can’t tell the neck muscles to push food from the top of the esophagus to the bottom, you choke. If your brain can’t tell the right side of your face to tighten up its muscles just a bit, then you drool. His brain took a massive blow to say the least.
But, at that point I had little faith that he would live more than a few months. I spent my days keeping him safe from falling and trying to find things he could play with that were interesting to him. I didn’t sit for weeks. As I tried to allow him to walk around with his walker, I had two hands hovering around his waist at all times. I never left him alone. I moved into his room to make sure he didn’t try to get out of bed and fall. He had a plate in his head freshly screwed in 5 weeks prior. His head was a huge concern for us. I didn’t breathe for weeks. I did not cook, clean, or sleep well. I had friends come into the house to help create safe places for John to play. We had to rearrange half the house to accommodate his needs. I held onto every moment and tried not to think of my son dying. He was still in diapers. I was not suppose to be fighting off thoughts of his death.
Im going to fast forward to today and what I have been struggling with. John’s not gaining muscle strength in his neck and legs right now. He is not gaining more balance. He has stopped progressing. he has hit a stopping point in his gains. the brain damage is permanent.
I never had the faith to look forward to what a year from now would look like.
So, I was shocked when the therapy department said they wanted us to take a break. I had not considered anything but constant gain until he was almost normal. In my mind, we were going to do intensive therapy until he was dead or 5 to give him the best chance at a normal life. For the last 10 months, my life has been consumed with John and his recovery. It has dominated everything in my life. Everything. I thought he would be dead by now, but that if there was a slim chance he should live….I was going to give the best shot at being normal that I was capable of. I have been a mess ever since this phone conversation with the therapist. I have cried and tried hard to come to terms with the fact that it is ok to take a break. It does not mean healing is over. It does not mean nothing else can be done for my son. It does not mean I have failed to provide everything I could for him to heal.
So I have sat in limbo between life and death for 10 months, never really choosing a side and staying there. But, rather, vacillating from side to side. It is hard to accept that where he is today is pretty much where he will be for the rest of his life. He’s broken on the outside. That is so hard. People see that. They judge that. They ridicule that. They do not appreciate the fight to be normal physically. Or that he is whole mentally. He is not like me. I am broken on the inside and look quite alright. But, my baby’s scars are set out for the world to see. That breaks my heart. My heart aches for what his 4-year-old mind is only beginning to comprehend.
A child didn’t want to be his friend a few weeks ago. I thought to myself as I watched him tear up. This is just the beginning. John said, “my heart is hurt, he didn’t want to be my friend.”
Enough for now, Faith