I'm going to stay home

I remember walking down the hall of U of MN Masonic Hospital. It was a private conversation. I needed to vent and my mom was willing to listen so I could get all of it off my chest. I was relieved to have her. I was full of tears, fear, sleep deprivation, and deep fatigue. We were discussing next steps. KKI was it. Masonic had zero ideas and with all of the people I kept meeting, none of them had much to offer at this point.

Grant was equally in the hospital this summer for his malnutrition as he was for his SIBS(self injury), but somehow this 2nd issue was not being addressed despite my plea for help. They simply agreed with me. Send him to another hospital.

The problem is, as you already know, KKI is in Baltimore and the wait list can be 6 months or longer.

Mom tells me in this moment she is going to come with me. I am so touched. She says she has to and it makes me cry. This is crazy, but I love the gesture. I know she would follow through, but this isn't going to happen because I can't go out there with him himself.

Now I don't know that on that day. But in that moment, it sounds awesome. Mom and I are roommates in a new city. I don't have to be alone and we help Grant with these very serious issues. Of course, my logical side is questioning her offer. But, in that moment I feel loved and supported.

I eventually tried to figure out if going to Baltimore on my own is possible. At first, I thought it would be easy or maybe not easy, but not that complicated. Scott would be in MN holding down this fort. I could take a leave, I would get a furnished apt, etc.

But, I learn it's not easy. It's not actually possible.I was disappointed, actually devastated. MA has yet to agree to pay for his medical care out of state. He has to be on my insurance so he can go to KKI. Scott's insurance won't work. I talk to people in HR (at my district). I realize it will cost me $20K. I have to come up with $20K alone to keep him on my insurance if I am not working full time.

I continue my math. My salary, of course is gone. His waiver money gone (because if he is in hospital it is discontinued). While math is not my strong suit, I realize we are almost to $100K. This has not yet factored in the apt, food, and transportation. This does not count having Scott come out to visit. This is not the kind of money we have.

I am not going to go bankrupt to live in MD while G is in hospital. This level of money is not realistic to fundraise or save independently. I have come to the conclusion this is fine. It really is despite my initial feelings of needing to be close to him. I will write more about that soon.

I can't thank ALL of you enough for contributing to our fundraiser, You have amazed me with your generosity and I feel so lucky to not only know you, but know that when life gets very hard...that there are many people that will try to make it better. Thank you. With the money we have raised to date, we will be able to make many visits to Baltimore. You have made it possible to spend many, many weekends out there. Thank you SO very much.