I remember walking down our stairs early one summer morning to find my boys playing quietly on the couch. Mitch slid down the stairs on his tummy and brought his favorite green and purple blankets with him. Ethan, being the stronger of the two, ran to the basement and lugged a plastic container filled with trucks, “guys”, and a medley of other toys upstairs. Both of my boys, gleefully unaware of their bedheads, began to play.
Mitch watched carefully as his brother showed him a trick from the top of the couch. “Ahhhh!” Ethan said with a descending tone as his truck tumbled down an imaginary cliff. I could see in my youngest son’s countenance that he was learning how to play in new ways, because of his brother’s example.
I sat on the steps quietly and watched these brothers just be themselves. My heart smiled. I always wanted children, and I knew I would love them. But I never knew how deeply I would love them. I simply wasn't prepared.
These were days of peace and serenity. Sometimes, when I grieve, I visit these lovely, ordinary moments in my mind and my heart finds rest. I am reminded that life was so good to me … and still is good to me. Though I carry the weight of grief and sorrow, I also feel gratitude and joy that serves as a counterbalance.
I can’t help but think how quickly these ordinary moments can slip by unnoticed. It is dangerously easy to confuse the ordinary as routine and uninteresting. Nothing is so taken for granted as the ordinary. Yet, when I think back on my earlier days, it is the ordinary that I long for. I don’t seek after the photos of our family standing at the gates of Disneyland or posing at some historical monument. I thirst for images of my ordinary life – for that is the substance of life.
At least to me, those seemingly ordinary moments are like bricks. They may seem identical in shape, color and substance, but over time, as we lay them brick-by-brick, moment upon moment, they can make something beautiful.
Though I cannot see with my mortal eyes what our little family has created, brick by brick, moment by moment, I can feel it with my heart. And in moments of grief, when the storms of sorrow beat at my weary soul, I can go inside that place and seek refuge. Those ordinary moments I’m tempted to think are nothing special are in reality, really quite special.
Two little women who completely stole my heart.
And thus began our family and our journey we did start.
Happy Valentine's Day!
When I peer out my window
There’s so much to see.
My eyes and heart, overflowing
At all the things of beauty.
But when I see my wife and kids
My soul begins to sing,
For they are all I've ever wanted,
I am richer than the richest king.
Though I ache to see my son,
To hold and kiss his face,
I know that I will see him again
In that other place.
The time will come, to see my son.
Of that I’m sure.
For I have heard a quiet whisper,
Spoken without a word.
Thank you, little boy,
For teaching me to see.
To look far past my grief and sorrow,
And appreciate life’s great beauty.
Each year Mitch was invited to go to the mobility lab at Shriners Hospital where technicians would attach sensors to his body and, with the help of sophisticated computers and cameras, model his mobility and muscle decline. I was always there to document the experience. While doctors were capturing his muscle movements, I was there to capture his beautiful, tender soul. Most importantly, I wanted my son to know how much I cared about him. I never wanted him to turn around and see a cold, empty chair where I should have been. I did my best to cheer him on until the very end. Although his body was getting weaker with each visit, I saw his countenance and kindness grow ever stronger. Sometimes the strongest angels have broken wings.
In this photo Mitchell’s Aunt Sonya, a pediatric physical therapist at Shriners, ran with Mitch and turned what might be a scary experience into something fun for him. She was a special tender mercy to our family. She loved little Mitch with all of her heart, and he loved her like a second mother. Sometimes guardian angels blend in with the rest of us.
Mitch smiled as he faithfully completed each task. With each routine doctors had him perform, their computer models of our son began to replay his movements with incredible detail. On their screen was a wireframe of a person walking, jumping, or standing up from the floor exactly as Mitch did moments prior. The same technology to capture body movements for movies and video games was being employed for medical purposes and Mitch thought it was fascinating.
What might have been a trivial set of routines for a healthy child was much more difficult for Mitch and he always left the hospital exhausted. One of the early challenges DMD parents’ face, while their children can still walk, is hearing comments from people who seem dismissive and comment on our child’s large calf muscles. “Look how strong his legs are!” they say with a slap on your back, “You guys are going to be fine” not realizing what looks like muscle is actually scar tissue. The truth is, the stronger (bigger) their legs look, paradoxically, the weaker they are. Thus enters the very real feeling of being misunderstood and further isolated from the world.
Gathering mobility data from Mitch was not only important for tracking his own health, we felt a responsibility to the DMD community at large, to contribute whatever we could to a much needed body of knowledge. We were just a tiny, invisible family and what little we could offer, we gladly handed over.
As we left the hospital I began to think deeply about our experience that day. I wondered what would happen if we applied as much effort to examine our inner selves as we do our outer selves. It is so much easier to observe and tend to broken bodies, than tend to broken souls.
So, when I stumbled across this image early this morning, I immediately wept for my son. I saw my little boy who loved his life, and suddenly it was done. I then renewed my promise, to my Father and my son, to live a life examined and to love everyone.
Yes, there are broken things to mend and I am sure to stumble a million-and-one times … times ten. It won't be easy … in fact, I know it will be hard. And when I reach the finish line, I am sure to have some scars. But all of that will be a small price to pay, including grief and pain, for those are the things worth examining from which we stand to gain.