We live it people! We live life!
Eight years ago when our boys with diagnosed with Duchenne; it was our first decision. We were going to live life in spite of Duchenne!
We go and we do. If you follow us on Facebook, I think most would agree that we are busy living it! (I’m a self confessed over-sharer).
During all this living, there are times that I have almost felt apologetic for how much space we take up when we are living it.
I mean our family of 8 is big and space encompassing for sure, but I’m talking about my boys that drive scooters. The scooters take up space. And they are driven by young boys. Young boys don’t travel in straight lines or at slow speeds. And, they use them to play and keep up with their peers.
Sometimes, I fight my urge to just let them be boys. If it were my son Chance and he was walking faster than me and got up ahead of me, I wouldn’t think twice about it. But when it’s my sons on scooters speeding up ahead they attract so many staring eyes. I get self-conscious. I start to wish we could blend in better, I wish we were smaller.
Today started that way. We were at state baseball, which means lots of people and lots of eyes.
An older gentleman sat his lawn chair right next to Rowen, who was sitting on his scooter. His chair was literally touching Rowen’s scooter. Immediately, I went to apology mode. I had Rowen move forward so the man could get to his seat. Rowen backed right back into his spot. I was ready to tell him to move and give the man some space (even though the man invaded Rowen’s spot).
The older man leaned over his arm rest and started chatting with Rowen. He asked him if he always had to use his scooter (after complimenting it, of course). It touched my heart because I know what that man was thinking. He realized that something was not right and he was hoping it wasn’t as bad as he was maybe assuming it was.
Later in the day I was caught up in the game, I didn’t realize Charlie left for the bathroom. I turned my head just in time to see him on his way back to me, burning through the crowd on rabbit speed (that’s the fast end of his throttle).Of course, I saw a horrified look on a woman’s face. We see it often. Often, it is followed by a comment like, “kids these days are so lazy.” A comment both heart-breaking and infuriating.
No comment this time. The woman watched him just a little longer and then her face lit up in a huge smile.It is happening more and more.
When I can let go of those heart breaking comments and take in the bigger picture, I always find smiles in the crowd.
They watch my boys, jovial as all get out and loving life. They see them on these scooters and most realize the boys have been dealt a tough hand. They see my boys loving and living life even though they’ve been dealt a tough hand.
They are doing something special. On some level they are showing us all that there is always a reason to be happy. They show us how to enjoy every day.
If these boys with an awful disease can laugh and play and enjoy and live, then we all can! I think that is what they show people.
When we are out living it, in spite of Duchenne, they are showing people how.
Maybe that’s why God chose us, he knew already how on the go our life would be.
I think they are making others more comfortable around people with disabilities.
First, they are too cute to be intimidating (my opinion). Second, they have so much fun and laugh so much, it is hard not to join them in laughter or meet them with a smile.
I think they have a special ability that makes their disability disappear. All you can see is the boy.
I never imagined we’d be that family. I never imagined 3 sons in scooters/wheelchairs, but that is how God blesses me.
He gave me a life with a front seat to some of the most beautiful things I never imagined.