However, as I reflect today on the memories of my seventeenth year, I do so with mixed emotions. Sure, I’ll hold onto those times and keep them close to my heart. Of course, I’ll reminisce and treasure the lifelong friendships. That will never change. But, now, those memories also bring a touch of melancholy as my son, Alex, passes that beloved milestone this weekend (April 3) while living within the grips of Duchenne Muscular Dystrophy.
On one hand, I am certain to celebrate his birthday as most parents do. When Alex awakens, I’ll jump on his bed with enthusiastic well wishes. I’ll dance and sing and tickle and tease until his face cramps with laughter and he begs mercy to breathe (note: there is no better sight in the world than Alex’s face during an uncontrollable, deep, belly laugh). I’ll appoint him King for a day and grant him most any wish. Later, as a family, we’ll celebrate over whatever meal Alex craves (probably Five Guys, Red Robin, or Steak ‘n Shake). We’ll help him open presents of video games, movies, or anything related to Star Wars or Batman. We’ll enjoy a dessert of his choosing (can you say DQ Blizzard!). In all, we’ll make his day as fun and memorable as possible because he deserves as much.
On the other hand, I will mask certain emotions, those I don’t want him to see. I’ll hide the heartbreak of another year gone by under the weight of Duchenne. I’ll disguise my concern for the next as he grows another year older. Because beneath the showering of smiles, laughter, and love, birthdays with Duchenne smack with reality of terminal disease. With each birthday, the someday of Duchenne grows closer. With each celebration, the gulf between dependence and independence grows wider, deeper, and less forgiving. With each year, we discover new obstacles, frustrations, and chapters of this merciless disease that become our new normal and settle as unwelcome fixtures in our lives.
None of us know our exact time. We just know it's someday and hopefully someday far from now. But, for kids with Duchenne, the weight of someday becomes heavier with each muscle loss, labored breath, and weakened heartbeat. It becomes more threatening with each sniffle, mucus drainage, or chesty cough. No matter what you do, living with Duchenne is like being strapped to an unstoppable, slow-moving, train on a downhill, shortened, track. As the train gains momentum, you increasingly experience bumps, twists, and turns, as you ride helplessly and blindly to the end, wherever that may be. Such a life can be terrifying.
…if you let it.
If there is one thing I have learned from our budding 17-year-old, it’s that life – no matter how tragic, shortened, or still – CAN be enjoyed to the fullest. Whether it’s fitting for hand splints, fist-bumping a complete stranger, or petting a dog, Alex has shown us that we CAN turn the simplest experiences into the best. We CAN find the joy in anything and hope in everything. He shows that our lives are not measured by years, milestones, or achievements, but moments, smiles, and love. Alex proves that life is not about waiting until things get better or racing to the next day. Life is about seizing, living, and loving…THE NOW!
I say this because we are lucky to see it every day. Caring for Alex allows us to experience how he absorbs each moment and any opportunity. It allows us to witness his love for anyone he meets, his want to communicate with sincerity, and his willingness to share a smile without invitation. Caring for Alex allows us the opportunity to hear his laughter bellowing from his room for the slightest of reasons and at any hour. It allows us to witness how he makes the most of his time while he has it.
We should all learn from this.
The tragedy of parenting a boy with Duchenne is that as you experience this life lesson you slowly lose your son – the teacher. It is heartbreaking. But it is also rewarding. That is why I blog. That is why I intimately share Alex’s story. If you know him, you will understand. If you have never met him, I hope someday you will. Because, I have never met anyone as upbeat about life, with as much going against him, as Alex. He makes a family proud.
So, Happy 17th Birthday, Alex!
Seize it! Live it! Love it!…every moment of it…as we know you will!
Oh, and about those stories of your Dad at seventeen….don’t believe any of them!