Front Row Seats

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.

I took the dog to the vet today. She needed an allergy shot. For just a quick minute I thought, “if this is biggest thing I have to worry about today, I lead a pretty charmed life.”

Then I laughed thinking about how other people might react if they heard me say that out loud. I laughed as I remember the stress level I’ve maintained this week.

Duchenne is heavy and hard.

Results of what I consider to be a scientific breakthrough in the treatment of Duchenne Muscular Dystrophy were released this week. A promising new therapy is on the horizon! It is truly an answer to prayers. It makes me so happy and yet I’m grieving.

It has the potential to save Duchenne lives. I want my kids on that therapy.

My kids are already on another therapy. One that 10 years ago was a scientific breakthrough of its own. One I feel blessed to have access to and have fought hard for. It is helping; but it is not doing what this other therapy appears to be doing.

I feel panicked. I’m worried that because we already have access to the first, we may have put our boys in jeopardy of having to wait years to have access to the new therapy.

I know nothing for sure. I’m playing a game of life or death chess in my own head with limited amounts of information.

Next week I will spend several days in Arizona at a conference with the most influential people in Duchenne. There will be the leading scientists and doctors, industry representatives, and hundred of advocates and parents attending this conference.

This will be the place I will absorb enormous amounts of information, ask my questions, and form new ideas about the best way to care for my boys as they get older and as more therapies become available.

I’m scared.

I’m scared I will not be brave enough.

I’m scared I will not be brave enough to make a decision.

Do we stay on the course we are on and risk losing access to new and better therapies? Do we stop what we are doing and try something new and risk losing all the benefit we are currently experiencing? Is there an in between? What if we choose wrong?

Will I be brave enough to make a decision and live with the consequences?

And I realize there are parents whom have lost their beloved children to Duchenne and never had access to any of it. To them, I must sound so damn spoiled. They would have done anything to be in my situation.

I haven’t slept. I think I feel an ulcer, or at least a huge knot in my stomach that is making eating very difficult.

So today, when the worst thing I was worrying about for a few moments was the dog’s allergy shot, life felt pretty charming.

But as I thought a little harder, scratched a little deeper…

the fact that I can forget for a few minutes,

the fact that I can celebrate a mundane task,

the fact that I have decisions to make about a disease that had no options 15 years ago…

There was magic in those few minutes. There was something very simple in that task. Magic and simplicity for a few minutes in a life too full of complicated and stress was really quite charming while it lasted.