2 years ago on 4/19/22, Wyatt came home from school early because he was having a rough day since he did not take his medicine in the morning. If someone would have told me that my entire life was going to change in 24 hours I would have never believed them. We have learned so much in the last 2 years. I have definitely learned more patience and learned to accept and be happy with where our life is today. It has not been easy but I feel like we actually thrive somedays..
As we all know, this damn diagnosis is progressive. Lately Patrick and I have noticed he is getting weaker and he is more tired after school and weekends but we aren’t letting that stop us. We continue to figure out ways that he can enjoy his days and make the most of the days he has energy. He has friends that come over and spend the day hanging out at home, ratting the streets, or hanging out at the neighborhood country club.
We allow him as much independence as possible but it is so hard when you know even a cup can be heavy for him. I have created some work around and they have definitely helped. My boy though is continuing to live his best life. In less than 2 years he has 3000 miles on his chair. We have had to replace wheels, lights, and cushions. Everyone says it’s a good thing and I know it is…he is out and about being as much of a normal 17 year as he can be.
I want to thank everyone for your support over these very difficult 2 years. Especially our family and friends who make sure Patrick and I are able to take time for ourselves because caretaker burnout is real. Wee want to be the best parents we can be for him and Wynston. #NotTakingAMinuteforGranted #LovingEveryMoment #StrongerThanDuchenne
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