Several Years Ago…
When Noah was two, he opened the screen door and started his solitary trek down the sidewalk. Moments later, the realization that he was gone socked me in the gut, leaving a knotted pain cramping my insides. In one swoop, I grabbed Judah, threw him in the stroller, and took off after Noah, who was already crossing the next block.
My legs couldn’t carry me fast enough. Oh, good! There are people standing in the middle of the walkway. “Please! Can you grab my son? He has autism! Please, stop him!”
To my horror, they looked my way and watched as Noah’s two-year-old legs carried him the speed of light right past them towards the next street with busy, oncoming traffic. Chest heaving and legs burning, out of the corner of my eye I noticed that we had become the neighborhood entertainment. Closer…yards away…now only feet…leaving Judah on the edge of the sidewalk, I lunged to grab Noah as a car whizzed passed. The draft from the speeding vehicle left me frozen as I held Noah to my chest. The spectators, disappointed with the anti-climactic ending diverted their eyes. Tears burned in mine and my legs “noodled” as our trio began the two-block journey home.
Judah and I pedaled our final lap around the block. I rounded the corner only yards in front of him, stopped, and waited for the clickety-click of his wheels. Nothing. Is he walking? Waiting… Still nothing. Dread squeezed the blood from my heart, which now pumped wildly, as I circled back around the block. He’s gone. Called all my neighbors. Jumped in my car. And drove. Up and down hills. Left turns and right turns. Circling around again. Nothing.
A dear friend stopped at the house to keep Noah company and reassure him I’d be right back. Memories of watching Noah, just beyond my reach, naively walking into rush-hour flooded my memory bringing feelings of utter helplessness. My fingers, white from gripping the steering wheel, ached as my heart raced with all the potential places he might end up tonight. Fear had no problem taking my mind captive and forcing my tears. What if he’s in someone’s back yard…they don’t know who he is…he’s non-verbal… What if he drove his bike into the lake (like he did two weeks prior) and found the drop off? What if he walked into someone’s house…like a predator? What if…?
Just then Neil called from work. “Beck, call Shawn! He’s got Judah. He’s over by the golf course.” Fear relented. Tears gushed. This time from gratitude and relief as I piled Judah’s bike into the car and drove him home.
Schwannomatosis. (“Shwa-noe-ma-tosis”) Wikipedia describes this condition as “a genetic disorder called neurofibromatosis (NF) that has only recently been recognized. It consists of multiple cutaneous schwannomas, central nervous system tumors, and other neurological complications, excluding hallmark signs of NF. It is a rare disorder, affecting only around 1 in 40,000 individuals.”
My husband describes it as “nerves that misfire, causing constant chronic nerve pain, along with multiple other neurological challenges.” People greet him, “Hey, Neil, how’s it going?”
Always good? How? I have to know.
“I wake up. I get out of bed. I drive to work. It’s a good day,” he explains. “I live today everyday. I’ve been blessed with ‘today.’ That’s all I need to know and live for right now. I take each day as it comes. I wake up. Get out of bed. I go to work. I come home to my sweetie and my two favourite ‘shorties.’ It’s a good day.”
No cure. No medication to relieve the pain. Prognosis: it’s get worse over time. So, where does that leave me with my mental-frantic-antics? I take my cue from Neil. I love him in and through his pain. When I see his pain more intensely some days, I’ll kiss him longer. Hold his hand, ever so gently. Make the moments last. He’s not dying from Shwannomatosis. It won’t kill him. It just hurts.
Pain and fear go hand in hand. Am I afraid? Sometimes. But the God who helped me reach Noah just in time; who saw and watched over Judah when I couldn’t see him, and who holds my husband’s life securely with hope has given me courage to face fear when it comes.
“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”
(Link below: Ready for the Storm by Rich Mullins)
This post was inspired and is dedicated to my sweet friend, Angie Dugi. I feel as though I’ve found my fraternal twin!
Thank you, Gary & Charlotte, Jason & Jayna, Shawn & Deanna, Caleb, Christian, Hilton & Sheri, Jim & Stefanie, Chris Mercado and Sheriff John Hall for being the a part of the neighborhood watch, the search party, prayer chain, and most of all, our friends last Monday.
Love you guys,
Neil & Becky