Birthdays in Duchenne have traditionally always been bittersweet for most parents I know. When our boys are diagnosed we are given an aggressive timeline of when they stop walking, when upper body becomes affected and when the heart and lungs will fail. So it’s no surprise that we associate every passing birthday with one more loud tick of the tick-tock that plays as the background music of our lives.
After the Grand Canyon adventure, Anthony stopped walking completely. Since May I have struggled to write a follow up piece. All my energy was being used to adjust to our new reality and I had nothing to give. I wanted to write what an enormous influence the trip had on me, the boys, our family and everyone involved. I wanted to thank so many people for what they did to help that dream come true…but I was at a loss for words. for months. until now.
I cycled through some grief making the transition with AC. It couldn’t be avoided. It’s a vital process and I’ve learned when it comes to pain, there is no way out except through. But with that said, the love and joy that boy emulates every day is SO loud; it easily drowns out that tick tock in the background as long as I let it. And today I believe we have, once again, come out the other side stronger.
Today Anthony turns 15. When he was little, I wouldn’t allow myself the luxury of daydreaming about the future. That was just too complicated of an undertaking. Today I can say I’m SO thankful I couldn’t. Because no matter how great and limitless those dreams would have been at that time, they would have fallen so very short of what we have today.
Never did I imagine in 15 brief years, my son would make such an indelible impact on not only my own heart but the heart of everyone who has spent time with him. He has taught gratitude, connection, humility, humor, courage and unparalleled passion for adventure. He’s taught several of us to show up in life in a way we never would have without knowing him. And he has taught me that it’s an emergency to be happy.
Since the Grand Canyon, Anthony is still touching lives and planning new experiences. And even in the space of becoming completely wheelchair bound (not to mention all the other new challenges that came with that change), he constantly carries with him a smile that he generously shares. Constantly.
When I asked what he wanted for his birthday this year, he gave me that gorgeous grin and said “I want a lovefest .” I know… that sounds scary… considering his age and all. I thought the same thing first time I heard it. But when I asked for clarification, I was told, “It’s a party where everyone who loves me, comes over and tells me.” That’s it. That’s all he wants for his birthday.
So lovefest it is!Feel free to come on over next Sunday if you want to join in. We will be here “celebrating everything until further notice”.
