My brother had a scary incident Wednesday after dialysis. I won’t go into a ton of details, but he was given a ride to my parent’s house because he wasn’t feeling well immediately after dialysis. When he arrived there, he was unresponsive. His blood sugar and body temp had bottomed out and he was worked on by paramedics and rushed to the hospital. He is ok now, but this incident brought up all kinds of things for Mickey.
The good news is that Mickey’s fear/concern didn’t manifest in behaviors as it normally does. He used his words and asked his teacher all kinds of questions yesterday. After a full day of this and with regular communication with me, by both Mickey and his teacher, he asked if I would pick him up because his struggle to stay calm was very real and he didn’t want to take a chance on the bus without me or his teacher to help him. That was very self aware and self advocating, so I picked him up.
When he got in the car he said “I love Uncle. I don’t want you to give him a kidney though. I want someone else to”. When asked why, we figured out what had him so worried. He thought if I gave a kidney it cut my life expectancy in half – because I am giving up half my kidneys.
We are trying to prep the children for the possibility of me donating, and the almost definite that Uncle will have to have a transplant, even if I am not the match. We haven’t talked about more than the high level because we didn’t want them to worry until we knew, but Mickey doesn’t always work that way. Yesterday he was told that I will donate if able – it isn’t optional – and why. He needs to understand that for me it isn’t a choice – it is my baby brother. But, he has agreed to add some coping skills, which we worked on with his therapist and his teacher, to get through the six weeks of testing we have coming up. I promised him he could talk to doctors and that we would do research so that he knew what would happen and that we would deal with the surgery fears after the testing.
He agreed and he understands. No emails from the teacher today, so that generally means his day is going better. This is how Autism impacts our life the most these days – even with mounds of therapy and vastly improved social skills and coping skills, it is the things that we can’t control (health, death, war, etc) that throw Mickey. Most of the time he can handle the day to day, but it is the things he latches on to in his head and then worries himself sick about. I am just proud that we didn’t see anger and behaviors. He asked for help. He verbalized his fears – even though it took all day for him to get to the biggest fear – he expressed his concerns. These are accomplishments and ones that we will celebrate.
Right now our family stands in fear. My brother went from stage 1 kidney disease to stage 5 six weeks ago. We went from 5 years or so to immediately on the need for a transplant. My brother is 37 years old and he is not well. He is trying to work, he is making jokes, but he is ill and it is breaking my heart to see it. He is my first best friend, the person who drives me the craziest, my rock and my biggest annoyance. We have struggled with his health since he was diagnosed with type 1 diabetes as a child and I have spent my life protecting him – some might even say enabling him. He is not perfect, in fact he is annoyingly self centered and not always very thoughtful, but he is also charming and funny and I simply love him. My parents, my brother and I are very close and we see each other all the time and talk even more frequently. My mother works with him and she is stressed beyond belief at watching him decline so rapidly. It has always been us against the world and so all I can do is hope and pray that I match so that he can get back to living.
Me and Uncle