Then, there are times when we have seconds to think and fewer to speak. Sometimes we hit the mark, other times we miss. Either way, our audience expects something, anything because they value our perspective. They know we have experience in what they face, and hope for guidance along their journey. In these times, words often emerge quickly, unfiltered, but from the heart. They can even surprise, causing us to smile in self-awareness, as if to say where did THAT come from?
For me, such words emerged the other day faster than I could think.
Alex and I waited in the blood testing lab at Children’s Hospital in Cincinnati. Our visit was off-schedule, atypical of the standard six-month interval we now experience with Duchenne. Our visit did not include Dexa scans, MRIs, EKGs, or the like. We were not there to see Neurologists, Cardiologists, or Endocrinologists, as we typically do. We came to Children’s to figure out how to end Alex’s congested misery, which had entered its 17th consecutive week.
As anyone knows, colds are downright annoying. The drainage, the stuffiness, the cough, the tissues. Ugh. All of it…miserable. For Alex, after rounds of antibiotics, over-the-counter drugs, restless nights, and cough assistance, the stubborn cold still would not go away. Although colds and Duchenne are familiar friends, we wanted to somehow end the relationship and bring Alex his needed relief. So, we met with Alex’s pulmonologist, Dr. Sawnani, took x-rays of his lungs to eliminate concern of pneumonia, and had him repeat a previously failed pulmonary function testing. All in a day’s work for Duchenne families.
The surprisingly long day ended with yet another Duchenne blood draw. I signed us in to hospital testing lab, found a seat, and scrolled the latest news on my cell phone. Alex, per his usual, approached anyone and everyone he could find and wiggled his hand in greeting to those who would notice. The waiting area was full of children and families of all ages and from all walks of life. Clearly, it would be a long wait.
Before long, Alex met a young couple and their son, who appeared to be about two years old. I watched and nodded a seated greeting, but let Alex do his thing. From a distance, I could see smiles and hear laughter as Alex quickly made new friends. When the young family was called into the lab, they picked up their son, thanked Alex for his kindness, and smiled politely to me as if to say you have a very kind son. I smiled and nodded my thanks in return, and then resumed watching the news and waiting our turn with needles. Alex looked for another family to meet.
Before long, the young family exited the lab and approached us again before they left. As they put on their coats, we talked in generalities, but something about their eyes told me we had much in common. They asked if we had seen Dr. Wong today, as they had, when it hit me.
THEY were a Duchenne family just like us. WE certainly had much common. With their son at age two, their journey had just begun.
How could I have been so rude?
I quickly explained how much we loved Dr. Wong and her cross-disciplinary team. I shared how Dr. Wong’s team has treated Alex like family for the past 15 years, and that I was certain this family’s trip to Cincinnati (from New Jersey) was well worth the effort. I assured them they were in good hands.
Then, I started thinking too much. I looked to their little boy, who rested in his father’s arms unaware of his future. I recognized his innocence, and remembered Alex’s. I saw the father’s love for his son, as well as the abundance of dreams he would gradually, and likely reluctantly, let go. In that short glance, I saw his strength for the present and his worry of the future. I saw that look because, as a Duchenne Dad, I’ve lived that look.
Similarly, I saw the mother’s love. In the brief connection, I saw her concern for the future and her determination to do everything under the sun to protect her child. I saw her pushing aside her dreams to help her son live the best life he could. I again saw that look.
We exchanged small talk and smiles of unspoken knowing.
The words spilled from my mouth.
“Duchenne is a journey...”
They emerged without thinking. It wasn’t something I had planned to say. I guess, intuitively, I wanted to prepare them somehow for the road ahead. Not that they needed my help, or they didn’t already know the obvious with Duchenne. More than likely they did. I guess my words were shared more to acknowledge an understanding for what they may be thinking. I wanted them to know they were not alone.
Then, I added…surprising myself…the following words that poured from my heart.
“…but, it’s a beautiful journey!”
I immediately thought...Did I just say that? I’ve thought it. I’ve written it. But, I’m not sure I have ever SAID it before. Let alone to strangers.
Regardless, the statement rings truth. I see this more and more every day. Where I once dreaded every fiber of Alex’s muscle loss, I find peace. Where I once feared my son’s future, as well as my own, I find understanding. Where I more than once lamented lost dreams, and admittedly still do, I find love….all of it in Duchenne.
As much as it sucks…totally sucks…more than anything sucks…the journey is beautiful!
I say this because nowhere else could I have imagined finding the beauty in things like…
…lifting my son’s arm to his mouth so he can “feed himself,”
…lifting his arm so he can rub crusty sleep from his eye,
…wiping milk from his lip or food from his face,
…washing and drying his hair,
…showering him and toweling him dry,
…peeling dead skin from his feet,
…applying lotion to his dry skin,
…clipping his toenails,
…cutting his hair,
…massaging his feet,
…massaging his muscles,
…cleaning his “backside,”
...helping him to "fill a bottle,"
…brushing his teeth,
…combing his hair,
…scratching his itches,
…dressing his limp body,
…putting a coat on him while he lays flat,
…pulling his constant wedgies,
…straightening his feet
…re-positioning his legs,
…sitting him back in his wheelchair, and even
…calming his concerns about life…and death.
Likewise, nowhere else could I have found beauty in things like…
…traveling to regional zoos, malls, and bookstores – all places where he is free to roam,
…talking with doctors, nurses, and administrators who treat Alex like family,
…witnessing his love for complete strangers,
…witnessing his respect for any person, in any job, in any place,
…holding his hand every night,
…listening to his laughter despite his struggles,
…seeing his smile despite his future.
I could go on. Those who read this blog understand what I say.
Minutes later, the young mother came hurrying back, somewhat winded but smiling and a little nervous. I thought she had forgotten something. She hadn’t. They felt it, too, and wanted to exchange numbers so we could stay connected along the journey. We parted as newfound friends, in Duchenne.
“They were a nice family,” Alex said as we watched her walk away.
“Yes, they were,” I agreed, disappointed in with myself for not meeting them sooner.
In that simple meeting of strangers, the goodness of Duchenne came shining through. Although the future threatens us with despair and the road ahead is and will be rocky, the present unveils a beautiful life. We need to remind ourselves of this whenever we can. All of us. Not just those in Duchenne.
I looked to Alex to share the feeling, but stopped and smiled instead.
There he was, living it...
...and working the room again.