Today I find myself a little lost for words. However, I have found this piece of writing which I feel sums up everything. It sums up now, and it predicts our future with Duchenne. I don’t really need to say anymore. For those of you struggling to understand the impact that this cruel condition will have on our lives, please read this. Credit to David Click for this powerful write-up.
“You never know what to expect with Duchenne. You never really know where you are along the journey. Duchenne is predictable as much as it’s not. It’s bearable, as much as it isn’t. It teases with normality as much as it destroys. It draws others to you as much as it isolates. It blossoms with love, support, and perseverance, as much as it seeks a foothold with anger, resentment, and despair. It’s exhausting as much as it is strengthening. It’s consuming as much as it’s giving. But, mostly, we have found, Duchenne is a journey of love and acceptance that is beautiful as much as it’s fleeting.
Our Duchenne journey began in 2002. The diagnosis left us stunned, in complete shock and disbelief. Duchenne Muscular Dystrophy? What’s that? It does what!? Are you kidding me!? It can’t be! We were following a path we had always dreamed for years! This can’t be happening!
Welcome to your new reality, Clicks.
Sometime after that first shock, life settled down as we came to grips with the then immature beast. Alex still played in the yard, though waddled. He still swam in the pool, though weakly. His friends visited frequently, and life was good. He had no real complaints, nor did we. Sure, Alex was slower than most kids. But, that was something we could handle. It ain’t that bad, I remember thinking. We can tame this beast, I naively convinced myself. Just look at that smile on his face!
Despite our positive outlook, Duchenne settled in.
Soon, Alex began to fall…a lot. He would appear stable one second, and then face-plant the next. School became a dangerous place for him as kids moved swiftly through the tiled hallways or on the asphalt playgrounds and Alex struggled to keep up and avoid being knocked down. We noticed how his muscles were weakening, as did he. I remember many bedtime talks when he would ask “Why am I falling so much? Why can’t I keep up? Why won’t my stupid legs work?” That early stage broke our hearts. As parents, you do your best to protect your child and soothe any concern. We pumped him with confidence and told him we loved him no matter what. We did anything to keep his smile alive.
That semi-mobile stage was tolerable because Alex was still walking, though his freedom started to wane. We carried him often. I hoisted him on my shoulders like any proud Dad. I tossed him through the air in the pool and jumped off the diving board with him in my arms. We laughed and played and let our imaginations soar. Life was still somewhat normal as we still used the family car and took those beach vacations we’d always dreamed for our family.
Despite our support, Duchenne kept marching.
We soon realized Alex needed a power wheelchair. Although some may consider that milestone tragic or sad, it actually brought us relief and happiness, because it gave Alex freedom of movement and us peace of mind. It also brought new challenges. Accessible vans cost how much!? Our home needs what kind of modifications!? Holy crap!
The concerns snowballed. Will his school accommodate his advancing needs? Will they understand his limits? Will my employer understand absences to care for him? Will they allow me to adjust my hours? Will they understand Duchenne? Should we get a nurse? Should we care for him ourselves?
Our heads were spinning.
Somehow, we made it through those transitional times, and then entered what I consider the cruise-control phase where we adjusted to everyday life with Duchenne. We learned routines for dressing, grooming, and traveling. We learned to live with bumps and scrapes on our walls as he learned to handle his wheelchair. We learned where wheelchairs were welcome (malls, big box stores, parks, museums, zoos) and where they were not (old cities, water parks, hiking trails, friends’ homes). We learned grass, mud, gravel, and sand were bad, and that concrete and asphalt were good. We accepted Duchenne for what it was and realized our good fortune.
Duchenne could care less.
With time, Alex started having back problems with the onset of many spinal compression fractures. It became painful for him to sit comfortably and he missed a lot of school. Toileting soon became impossible, and we were forced to find other means to help with bodily functions. His torso weakened dramatically as did his arms. His weight increased from immobility.
As his body weakened and matured, we learned to adjust. We learned how to lift deadweight (note: Alex now weighs more than me). We realized the importance of our health in his daily care. Likewise, Alex encouraged our well-being, and knew we must stay strong to help him. I reconsidered physical sports (i.e., softball, basketball, racquetball, etc.) to avoid injury. I learned to appreciate the power of low-impact exercise (walking, swimming, hiking) to stay fit.
Still, frustrations never ceased and tempers often flared. Alex became increasingly dependent, and frustrated by his inabilities. He could no longer feed himself if sitting, and needed to lean back far in his chair to “climb” food to his mouth. He frequently dropped things (cell phone, Lego pieces, PS4 controllers) because of his weakening grip. He struggled to hold a menu or lift a simple drink. He increasingly became uncomfortable in his bed or wheelchair as bunched shirts, wedgies, and itches would drive him (and me) crazy. If he wanted to leave the house, dressing, grooming, preparing, and hoisting became major, time-consuming, productions. Often, the littlest of things sparked angry words, and arguments snowballed for no reason other than frustration, fatigue, and exhaustion.
Duchenne smiled with pride.
Thankfully, such eruptions are short-lived and burn out quickly. Afterwards, we laugh and love as always, and push back against the stealthy beast. We share knowing looks, smiles, yawns, and belches. We talk about life’s joys, sorrows, worries, and fears. We laugh about the past. We talk about the future, but focus on the present. We hold hands every night while falling asleep, and our last words are always love you.
As our journey advances, if there is anything positive about Duchenne it’s that Alex and I have become close…very close, like-an-old-married-couple close. We finish each other’s sentences. We know each other’s quirks, habits, and needs. He gets my jokes even before I say them, because he’s heard them a thousand times before. He looks to me for wisdom and direction, and he trusts me completely. I enjoy his outlook on life. We appreciate what we have and try to forget what we don’t. We keep marching onward, together and unafraid, as we watch the beast grow.
We’ve been through a lot over the years and know it’s only just begun. Knowing those living with Duchenne in their advanced years, like Ian, Paul, and Ricky to name a few, I am fully aware that we ain’t seen nothing yet. Life with Duchenne never gets easier, only harder.
Oh joy. Can’t wait.
Until then, we simply just do the best we can and take each day as it comes.
So, this is where we are right now. Somewhere in the middle of this incredible journey. This is where I take a deep breath, reflect on how far we’ve come, and buckle down for the long and challenging road ahead. This is when I walk into Alex’s room and sit near him while he plays a game or watches a movie. I listen to his laughter and join in his smile. I talk Star Wars or Disney because I know he enjoys it. He may ask me about the Reds. Oh, I still roll my eyes, every now and then, and grumble when he asks for yet another water bottle. That’s every parent’s prerogative. But, I try to remind myself where we are in this journey, and appreciate all we have right now.
Because with Duchenne, each day is the best it will ever be. That fact alone smacks me with life perspective I never would have imagined otherwise.
For that, I strangely say thank you, Duchenne.
But, don’t get a big head, because I really don’t like you….at all.”