I was up all night just sick to my stomach at the idea of taking Nathan back to day treatment. It was such a flashback to three years ago when we did this. I really wish this was not the route we had to go, but know it is our only option at this point.
Day 1 of day treatment was not the best. Nathan did not want to go, but with the help of the nurses was able to go in. We met with the intake person and I was asked to come back at 11 to meet with the team. We discussed our goals and talked about Batten. I let them know my main concern was that they understood his disease so they could better help him. The next concerns were him to stop hurting himself and stop screaming. If we can get these behaviors under control, there will be more peace in our house. This has been so hard on all of us. Madison does not have any 13 year old normalcy and it breaks my heart. Nathan is not a happy 11 year old and that kills me. I don’t think Jay and I even know what normal is anymore.
After meeting with the team, I was in the hall and could hear him screaming for me that he wanted to go home. It breaks my heart, but we are hopeful that this will help. I waited at the hospital until 2:30 and picked him up. He was very agitated the whole way home. This will definitely take some adjustment.
Our wonderful community has organized meals for us. They have been such an amazing support for us. Since Jay and I both work, getting him to and from day treatment, working and getting dinner on the table is going to be a huge task. We cannot express how much we appreciate everything everyone has done or even offered to do. It really means the world to us during this difficult time.
I will keep everyone posted as they days go on. Thank you for all your love and support.
Jay and Stacey