At diagnosis we were told that Wyatt would live into his late teens, soooo now what? He will be 18 on Thursday. I have been in a scary terrible funk since Jan 1, 2024. I’m sure it wasn’t that exact day but it was that week. I knew Wyatt was turning 18 this year and I knew his last first day of school would be August 9, 2024. I thought I put on a good face but I have been married to my best friend for 20 years and he could feel that I was slipping into a shadow of my normal self. He even told our DMD mom friends that I am in a funk and those moms (some of my closest friends) said "you just need to keep living" but this time for some reason I’m questioning how I am going to do it. .
It’s a hard reality to swallow. And so many times I don’t think anyone wants to hear about it anymore but one night, at the PPMD conference, 2 of my friends said "we want to hear your voice…this is hard. It suck’s, but your voice reminds us we are not the only ones." I hate to vent and lately I feel like it is heavy and that because it truly is….So today I am finally sitting down to put all of it out there. Michael and Ash this is for you. This IS A HARD ONE!
During conference I went thru many stages of grief and one happened while attending the adult DMD caregiver session. It was very informative and I made a list of things I needed to do but damn reality is hard. It felt like 2 years ago when I thought I was ready when Wyatt stopped walking and then realizing I was not. It’s my new soapbox to help prepare families for this new phase because when Wyatt was diagnosed we were not sure we would get to 18 years old and to get to graduation but here we are, so now what?
I’m scared, I’m lost, and I’m sad. The question I get asked most is what is he going to do after graduation....we have NO idea. He hates school so we know he is NOT going to college...but what then will he do after the last day of school. I know thinking of the future is not optimal and I try to live in the moment but sometimes I need a plan of some sort to get through the moment. So any suggestions are always welcome but we as a family need to find our own path so we can all thrive going forward.
It has taken me a bit longer than I planned to write this blog because when a family member's life is ripped away it makes planning for a future with DMD even harder.
On our way home from conference we were told my cousin Kristie was murdered and ripped from our lives. Obviously when something like this happens there is no planning and the grief is so deep. But as a family we will continue to live our life to the fullest for ourselves because in reality there is no real planning for an unknown future.
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