For most, the word ‘progress’ means moving forward, making improvement, getting better.
For those living with Muscular Dystrophy, the word ‘progress’ is a four letter word. It means the disease is showing it’s self. It is something that sneaks up on you and you may not notice the progression until a skill is taken away.
I had mentioned to Liam’s warm and caring bus driver, Mr. Rick, that I thought Liam was having a hard time stepping up into the bus without my boost. It was something that even a week before was not as noticeable, but that day, progress showed.
Liam primarily uses his wheelchair at school, but occasionally he has the chance to accompany me to the grocery store. Liam can walk with me (or in the opposite direction, only looking at the seasonal candy, grrrr) for the first half of the store. This day in particular Liam couldn’t finish the store even in his manual wheelchair. I know I look insane when I push Lydia’s tiny cart, because that is exactly what happens by the end of the trip, and my arms stretching wide to also push Liam in his chair. I’m tired by the end of shopping, but I recover. I’m so thankful to be able to recover.
We visit Cincinnati Children’s every 6 months to meet with Liam’s team of doctors. The first few visits my heart would ache for the days approaching these visits, knowing that the doctors would be giving us news, hopefully no news (YEY!) or bad news. Recent visits have been far more comfortable to approach, as we are the ones that are telling the doctors about the disease. They know so much, and so very little about MD. As frustrating as it is to be a family going through the course of this disease, I only imagine what Liam’s doctors go through. They meet wonderful families, give them crushing news, and they know that there is no fix, no cure for the disease. To watch that happen must be heart breaking.
We have been warned that ‘progress’, that horrible word, comes in spurts and then levels off for those with MD. In our new normal, progress is holding tight to the skills he currently has. Holding on to the possibility that his tired days are few and far between. Holding tight to the idea that maybe he can run just a little bit farther to chase after his buddy. Most of all, I’m holding tight to this amazing little boy who calls me ‘mama’.