My wife had an ultrasound at 21 weeks.
Then she called me at work from the doctor’s office.
The ultrasound showed the nuchal fold, and just like that, normal life ended. Our baby had spina bifida.
We went to the high risk pediatrician and had the ultrasound which confirmed the diagnosis.
We talked with the genetic specialists, who told us there are states we could still go to…
It took longer to say the word than to arrive at the conclusion.
The next 3 months (and the 12 years since) were full of tears and worry, fear and anger. And oh, the endless questions – Why us? What did we do? What CAN we do? Will our lives ever be the same?
He had his first surgery less than 24 hours after birth, to close the lesion in his back. It looked like a purple golf ball, buried in the sand just above his little butt.
Wrapped up in gauze, feeding tube inserted, neither my wife nor I could hold him for about three days, as I recall. Even so, there were families, and children, in that NICU unit facing greater challenges ahead than we did.
The second was 7 days later. This time, they inserted a shunt to remove excess fluid from his brain.
Since then? I’ve lost count. I can only say for sure he’s been under knife in his 11 years many more times than I have in my 41.
Two weeks followed, days and nights of celebration and silence, love and loss, pain and joy. The overwhelming memory of this time for me is the twice-daily drive to and from the hospital over bad pavement, and my wife, recovering from her own C-section, facing with dread every bump, pothole and railroad crossing.
For extra drama, tack on a chicken pox exposure to the entire NICU. Good times!
But guess what?
That boy is an endless treasure.
He can’t walk without crutches, and even then it's a mess, but he can play baseball and hockey.
He’s well behind his peers in school, but only because they don’t measure passion, empathy, sweetness or imagination.
You know what else? Normal life doesn’t end. It disappears for a while, then reappears. It’s like the backdrop after shaking a snowglobe. For a short while, you can’t see the touchpoints, the anchors… the things you can count on.
Family. The good friends. God’s grace and mercy.
After a while, it all settles down, and normal returns after a costume change.
Now, normal means doctors in battalion strength. Bills to match. Shoes that wear through the toes before the soles (crawling is tough business, you know). Wheelchair maintenance. Laxatives, and pills like raindrops from the sky.
Weekly fights with insurance companies. How in the name of all that’s holy can you cover a surgical procedure and deny the claim for the anesthesiologist?
He’s a fifth grader who can’t control his toilet functions or fully dress himself. And after almost 12 years it’s…
Prying him away from his imaginary world where Luke Skywalker and Harry Potter fly around on giant birds of prey, fighting the nefarious forces of Voldemort’s SuperStar Destroyers and his light-saber swinging, Death Eating Stormtroopers and getting him to eat supper is...
A first grade daughter who reads at his grade level when he cannot is…
Sensory issues that plague all our efforts to get this boy to brush his teeth are nothing more than…
Close your eyes and think for 10 seconds on the answer to this question.
Do you have the perfect life you always imagined?
Anyone who can answer yes is a liar. WITHOUT EXCEPTION.
This life isn’t even mine.
I have the life God has loaned me. He put this landscape before me. Set me on this path and told me “Walk, and find me along the way.”
And so I walk.
And in that walk, every day I learn a little more about my precious disabled boy, and about myself – how caring for him is God’s work for me and for my wife; how his seemingly endless compassion and hope are a daily look into the face of Christ; how seeing him struggle to find his own crooked path in a world most of us couldn’t possibly recognize reminds me that the Holy Spirit is ever-present and always working in him, and on me through him, and through me on others.
And to think… I could have avoided all of this.
I had options.
I could have let it all go.
>Better to surrender to weakness than risk the fight. Better to back away from a daunting challenge, and rest in the ease of the smooth-edged, filed-down, tamper-proof existence.
I know that voice. Still, and often, I hear its seductive call. I know that voice, and to whom it belongs.
It’s the voice that never speaks back to my question in return:
At what cost? What infinite cost?
Again, I shout…
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