My son, Samuel, has dwarfism. Not the kind of dwarfism seen on television, but a rare and lethal type called Thanatophoric Dysplasia. In Greek, this diagnosis means “death bringing.” I, however, chose to live as if it means “life giving.”
It’s easy to see this preferred definition in our son’s smile.
His fits of laughter and giggles fill our home with joy and bring this condition into a different perspective. One doctor even suggested his diagnosis be amended because our son is very much alive!
The odds my son had to overcome are hard to comprehend. At one point, he was on a machine which delivered 200 breaths per minute. The doctors gave him Morphine to keep him still. We were told he would die. Worldwide, only 8 other babies with this condition have lived past birth. Samuel was number 9.
The miracle continued when he came off his ventilator a few years ago. With this freedom, we gave Samuel a new view of the world by driving to see one of the wonders of the world—Niagara Falls. From the grand to the mundane things (like playing with drawers), our little man enjoys life.
We approach each day being a family of three. A happy, healthy, little family. Sometimes, I hear of a wee one with this diagnosis living only hours or few days, and I wonder how my sweet son ever made it out of the hospital.
With this knowledge in the back of my mind, I’m reminded to enjoy this precious gift and cherish every moment.
I have learned that I must choose to pause every time I walk by a beautiful rose in full bloom to savor its fragrant perfume. And so too, I must stop and savor the laughter in my home. I choose to put down my laptop, scoop up my son into my arms, and tickle him for the pure joy of it.
At times, I’m reminded of my son’s fragility. Every night, I turn on Samuel’s pulse oximeter, which reads his heart rate and his oxygen levels. I watch the numbers change. I do a happy dance if I see a 95-100% oxygen level and a heart rate in the 70s as he sleeps. Otherwise, I pray.
As I type this, his oxygen numbers are blinking red. An alarm sounds. My husband turns on the concentrator to supply my son extra oxygen. The number turns green as the machine works to give my son what he needs. His heart rate is in upper 70s, which makes this Momma happy.
The fragile side of Samuel reminds me to daily cherish this gift we’ve been given. To be thankful for health, love, and laughter. Especially the laughter of a child.