It was a mere 5 months ago that I promised to write again soon – seems like only yesterday. But, Duchenne Muscular Dystrophy is a balancing act, and we ended up on one side of the see-saw. We spent the last few months taking care of Gus – we bought a new house – one that’s better for him (not perfect,but better). There are far fewer stairs and a flat lot. While it seems like yesterday when I promised to write, the actual yesterday was Gus’ birthday. He turned 6 and I had to write in honor of that.
It was a great birthday! Gus came down at 5:40 and crawled in. At about 6:20, I slipped out and we gave Gus breakfast in bed. When I came home from work, Tonya left to pick up Abe and Isabel, and I asked Gus what he wanted to do. He said he’d like to, “Ride the tractor down to the pond…” (Disclaimer #1: We don’t actually have a tractor, we have a small riding mower. Disclaimer#2: We don’t have a pond, we have a vernal pool…it will be gone by June.)
ANYWAY, the moment was sweet, even if it was fleeting. We climbed onto the ‘tractor’ and drove down to the ‘pond.’ Then we mowed for a bit and Gus steered – making S-curves all over the lawn. When Gus got tired of that, he said he wanted to read a story – we went inside and snuggled under a blanket on the couch.
Tonya got home with the other two kids, and we made Gus’ chosen dinner. We moved to the ice-cream cake, Gus opened presents and loved every minute of it. It was perfect, a day full of moments that will become precious memories to be tucked away and treasured forever.
Gus turned 6 yesterday and his disease reminded me that each of those memorable moments are rare and shimmering and beautiful. At the same time, it wouldn’t let me forget that they are also far too fleeting.
That’s the balancing act. This disease, Duchenne Muscular Dystrophy DEMANDS that you be aware of EVERY moment because those moments won’t last. At the same time, it has you forever vigilant about what’s next. It won’t allow you to be satisfied unless you are doing something to change the impending future.
I wrote and recorded a song that ended up dealing with this balancing act- I started it when Tonya was being treated for breast cancer and finished it after Gus was diagnosed. Gus’ verse goes like this:
“At night I lay down next to you sometimes I can’t believe that someday all of this may change – your eyes, your smile, your innocence, the way you laugh the way you dance, I want to hold back time just to keep you safe.
I had another verse that didn’t fit into the song…“They tell me all I have is now which always makes me wonder how I’m supposed love this moment then just let it go…”
And that summarizes it. How do we love this moment fully and then just let it go? How do we give our boys with DMD a life’s worth of love in every moment? How do we somehow use that love and devotion to make us stronger when we know that it makes us more vulnerable? How do we live full lives with our boys and, at the same time, be full-time advocates for them?
In the end, I think, we shelter their dreams. We deeply believe that those dreams are far more precious than memories but we live our lives honoring both.
Enjoy the song – and finally Disclaimer #3 – WordPress won’t let me upload just an mp3 – so I made this into a video with pics of Gus and the family – I hope you enjoy the song, and I hope you find the pics of the family an appropriate backdrop…