A New Chapter: Coming Home...Alone

I don't know what I expected for to be like after day 1; however I must've had some pre-conceived idea. I am really busy. It is great. I wouldn't mind for everything to slow down a bit but I don't hate being so occupied either. I think it is much better than being alone contemplating life.

It's funny that despite the fact that I have 500 students; I feel like I talk to people less than ever. I am back to the FT teaching job. My room buzzes from 8 am - 2 pm. And that is what it is...a loud buzzing of children's voices. A buzz. If a parent were to accusse me of not knowing about what a kid was saying in my class...you are right. Try having your one set of ears and 20-30 people discussing things all at once. Every once and awhile your brow crunches in disappointment. What did that child just say? Something about poop!? Something about bloody Mary?! Why are they discussing if Santa is real or not? Why do those 5th graders keep saying the word "illuminati" over and over?

I digress. It's not stimulating as the adults I met in the last 3 months. In Maryland, I was surrounded by adults in 1 of 2 camps. Other parents caregiving for children with cancer, unusual disorders or other parents that have their child at the same place Grant was OR I was talking to a professional in the unit. If we weren't discussing G, then we could find some other mutually interesting topic. It was nice and it was much more stimulating than losing one's tooth or that next month is someones birthday.

I was almost never alone. Many days I didn't get into my room until 8 pm or later. Then I needed to call Scott. I was so busy that despite maybe only talking to my sister's once, maybe one phone call from a friend...I hardly noticed. Most days my throat hurt from the non-stop conversations. I didn't hate it. I am an extrovert when I want to be. However I love alone time and was surprised when anyone from MN commented how they imagined my life was in MD. They were frequently making off assumptions. I was not lonely. I was fufilled in many ways. I felt more home than I had in a year. I was with Grant.

Fast forward to now. The main question/assumption I get is about Grant is - the assumption is he is better because I am home. Or the assumption is I don't want to talk about him. Or I am asked how he is better. No matter how it is stated there is no simple answer. It was 3 months. I have not found a quick answer. I wasn't prepared to have a 30 second sound bite. So I will try to write about these topics here.

Is he better today? Yes and no. Compared to Oct? Yes, he is 100% better. But, he's also back to baseline. I watched him "wake up" and then watch all of his treatments fall apart. I saw that his SIB rates were not down and in fact they are high enough that I was starting to feel like maybe he needed a helmet or metal poles put back in his arm sleeves. He went from a supported self-feed back to feeding therapy where one person blocks and one person feeds himself in an adult high-chair.

I questioned every single policy and rule. I left angry. There are no simple discussions here. And while some things are better; I worried about his non-stop daytime bruxism (teeth grinding) and his inability to get fresh air. I worry about a person's mental health in a facility with little access to their family and going outside. These elements are much underminded at KKI. They should reflect on how to make these things better and I told them so. No parks. Some kids get out a lot. Others not. It can be better. It should be.

Coming home is hard and it's easy. I am back to grocery shopping, driving a car, going to school, cleaning my house, paying the bills, and taking out the garbage. I can go to the dentist, physical therapy or Target as I wish. I am back to having choices over what I eat and what time I would prefer to do so. I am choosing to re-acquaint with old friends and make plans. I am reminded I live much too far away from the main city.

I am living alone for the first time since 2005. I can't see my husband or my son. I don't have the non-stop support of new friends and employees that deeply care about us. Nor does anyone here have a full grasp on the situation so it's constant explaining that gets tiring.

Grant has been slowly eased back into ECT therapy. I am unclear of truly if it is helping or not. He caught a stomach bug and if he gets sick; then he can't go to ECT. Hopefully next week will be his first 3 time per week treatment. We need to get him back there for whatever reason. This "bug" means that he will stay longer.

When does he come home? We don't know. The fact that I came home because I ran out of sick days does not mean things are better. It means Scott and I traded places. Please keep our son, our family in your prayers or positive thoughts. There is still no obvious answers and there may never be. It is hard to accept this, but I think I have.