Caught in a Valley of Awkwardness

We're suddenly caught in a valley of awkwardness. In getting around, in day to day life, even in groups and conversations.

Pretend for a moment you are a ten year old boy and your muscles are not working and it will be a lifelong situation. You are to not fatigue during exercise. To limit yourself to 5 minutes of exercise and to not lift more than 2-3 lbs. Then, you go to say, Scouts- with other boys and hear various people say things to a big group of boys like:

"This makes boys strong!"
"You need to go outside of your comfort zone."
"Strong boys have happy lives!"
"It's so important to be physically fit and strong throughout your entire life."

Those are examples of general statements that have turned my stomach in the last week. They've left me feeling confused.

Overall, I feel like we've moved - even though we've lived in the same house forever. You know, when you move and every conversation you have is with a stranger, When you have to find your way to places you need to go to but you're not quite sure how to get there or where things are once you are there. When everything is new and all the newness is getting tiring.

After sitting stunned while these words linger in my head- I know that those around us have little idea what muscle wasting disease is really like. I used to see people with muscle disease and not think about it for more than a minute or so.The ramifications of losing your muscles is really intense. Every part of Max's day is affected by weakness.

In actuality, Max is stronger than most people. Real strength doesn't come from milk, or keeping a fitness log. Staying in your comfort zone can in some cases save your life.

From now on our goal is to keep what muscles he has for as long as we can.  It is also important to keep Max as safe as we can. It's really weird -all of this. Stuck in a valley, in our own neighborhood. When the day-to-day language makes us feel foreign.