Change. Growing up as a military brat, then later being married to a military man for 27 years you would think I would be used to change, but I hate change. Every 3 years my dad would get orders. We would prepare for the move , learning everything we could about what our new world would be like. You would grieve with each move having to say goodbye to friends, school, and everything else that made that place feel like home. Change; we would start all over again in the new place. Trying to figure out how to fit in and feeling very much alone. I had to go outside my comfort zone to make new friends, get used to a new school and do what I could to make that new house feel like home. You would think that military life, and the changes that involved would have prepared me for what was to come in my life, Duchennes Muscular Dystrophy.
Change. Constantly shifting the normal. Constantly changing to make life as normal as possible for Ryan. Change; going from walking to needing a scooter to a wheelchair. Change; purchasing a wheelchair accessible van. Change; remodeling the downstairs of our home to make it wheelchair friendly. Change; putting in a stair lift so Ryan can use the upstairs of our home only 3 yrs later that lift is not longer usable. Change; building a wheelchair ramp . Change; trying to help Ryan to learn a new way to feed himself after back surgery. Change; purchasing a hospital bed. Change; bringing machines into the home that will help Ryan to breath easier.
In military with each move we had to say goodbye to the life we knew. Duchennes, with each change we have to say good-bye to what Ryan can no longer do, then do the best we can to make his new world as normal as possible. As with the military life, having a child with a long term disease you feel very much alone, like an outsider, you have to go outside your comfort zone many times to advocate for him.
With the military, we knew we were only going to live in that place a short time, so we got past our grief of having to say goodbye , excepted our new life and learned how to make our new world work. Duchennes is very much like that. You know your time with your son is limited. So you do the best you can to except these changes as they come, and learn as much as you can about this new world. In the military you knew those new orders would come and you would have to move, but while waiting you lived your life making the best of where you were. Having a son with Duchennes you also know that those changes will come, you try not to focus on that but on ways you can make today the best it can be.