I don’t think there is another word to describe what I have been experiencing this last week or two. I am pretty sure I have been in mourning.
I am mourning the life we should have had. Instead of thinking about basketball games and tests, we get to think about those things and energy conservation and stretching and home modifications and managing a basketball game. The list goes on and on and on and on….
The worst part of all that is trying to find the balance. The balance of allowing Cole a mostly normal life but having to keep Duchenne in the back of our minds. The balance of what is too much and what is not enough. The balance of training our boys to become God loving men but yet considering that Cade may not be given the opportunity to become that man.
The balance of trying to find a release for all the emotions but remain positive for the boys. The balance of trying not to feel absolutely defeated. These couple of weeks I have been totally failing at that balance.
I am mourning the loss of my ability to think of things in normal terms instead of in terms of Duchenne. I wish that I could go back to the days where wanting to go to a basketball game meant that all I thought about was making sure the boys had all their homework done. I long for the days that whenever we wanted to travel we didn’t think about the burden that would be on either Cade or family.
I wish that when we are considering any new adventures we didn’t have to think so far into the future to make sure we can adjust things to Cade’s needs. I wish Duchenne was not a part of our everyday vocabulary.
But mostly, I am mourning the loss of carefree childhood my son should have had. I want for him to have friendships were I don’t have to worry about their reactions as they discover more of what Cade’s diagnosis means. I hate that we have to change everything for Cade. I just want him to be able to go outside and run and play like a normal child. I want him to just be a child.
But on June 1, those wishes were all taken from us. And for some reason, I can’t seem to get past that recently. I can’t seem to find an ounce of positive outlook in my body today. So if I seem distant I am working really hard to get past this period but it is definitely not passing as quickly as I would like.
In an attempt to be more positive, I’m posting a picture of the mock ups of the shirts we are offering. We are still taking orders until January 29. They are $20 each and we will be donating all proceeds to Make A Wish.
Cade is really excited to be able to make this donation and to see the shirts being worn around the community.