We live everyday with Duchenne so when I say yesterday was full of it perhaps it’s not clear. The thing is that we get into routines and find our own normal and days turn into weeks into months and we just live this life.
But then we have days where things don’t go routinely and the disease seems like a bigger piece of our life.
I went to help Max up and down the stairs to the cafeteria at lunch. It’s something I do 2-3 times a week. The chair he sits it, that provides him with extra back and foot support was broken.
Rowen fell at school. At first, it was just an email letting me know what happened. Then it was a phone call because he was in the office with pain near his hip. He came home to rest and fell a second time. Falls are very scary.
Rowen is fragile. Any fall poses the risk of a break. A break in a child with Duchenne has the potential to take away the ability to walk or worse could cause something called a Fatty Embolism Syndrome (FES), a serious and life threatening condition.
Needless to say, falls cause a lot of anxiety for not only the parents, but for the child as well. I think that anxiety is probably why Rowen needed to come home. The fact that he fell two times in one day is a display of disease progression.
Charlie wants desperately to play baseball this summer. Several of his friends are now transitioning to travel summer ball. I’ve had to have a few conversations with Charlie about it. At his age, it is not always clear to him how his disease makes him different from his peers. It was hard to tell him if he was on a travel team he might not be able to hit or field the ball.
That, of course was in addition to daily meds, stretching, therapies. It was a lot.
Many times that’s enough to feel defeated. It’s ironic that as the boys grow weaker though, I think our family grows stronger in order to deal with the always changing and deteriorating nature of the disease. We grow more resilient.
We also work hard at finding the joy in every situation. It’s the only way I can imagine living this disease without giving in to the fears and realities and living in fear and desperation. We have to find the good in every situation. It is a survival technique for us.
When Max’s chair was broke, two teachers helped me carry it upstairs as I carried Max and they tried to find someone to fix it.
His school is a small private school that is not completely accessible, although they have fundraised and are working to make it a building more accessible to our sons and everyone.
It the midst of the chaotic day, I get an email from Max’s religion teacher.
Here, she is pictured with Max and another teacher. They were the two that helped me carry his chair.
All I see is love in this picture. They were watching a video of Max. One that I had shared on social media celebrating how well Max is doing in spite of Duchenne. They were huddled together celebrating my boy. All I see is love.
When Rowen fell the teachers and school secretaries took care of him and kept in contact with me.
Rowen was okay. Both times he fell. He got back up again.
Charlie doesn’t see how he is different. He could be very aware and it could change his joyful nature, but he doesn’t and that’s beautiful.
I swallowed my pride, embraced my humility and started asking friends’ parents about their summer plans for baseball. I had considered trying to have him settle for being a manager on a travel team and give up playing.
Then I found a friend, someone Charlie really enjoys spending time with that was willing to play on a parks and recreation team if Charlie was willing to play too! Charlie can play and with someone he really likes.
At the end of the day, our blessings and our joys added up were greater than any havoc Duchenne created.