The phone rang. It was 3am.
“Mom,” my son Sam said so quietly I almost couldn’t hear him, “can you come get me?”
Eight months earlier, Sam had walked across the stage in cap and gown, head held high, a smile playing at the edges of his lips and accepted his high school diploma. In August, on a Presidential Scholarship, he’d headed for college without a backward glance, ready to shake free from the past three and a half years of serious illness and start fresh. Clean slate. New beginning.
But you can’t shake free from the illness written in your DNA.
“I’m on my way,” I told my son and pulled out into the icy February night. Snow crunched beneath the tires and a few flakes glittered in the headlights.
My son had gotten sick with what we thought was the stomach flu on his brother’s 17th birthday and never got well. He’d lost 22 pounds in eight weeks and wound up on the acute care floor of Children’s Hospital. Five days into his stay, very late one evening, Sam’s surgeon walked slowly into the waiting room, sat down across from my husband and I, and said, “I owe you an apology. Your son is far sicker than he presents.” Sam was diagnosed with eosinophilic gastroenteritis that night, but other diagnoses soon followed: spontaneous pneumothorax, dysautonomia, autonomomic neuropathy, delayed sleep phase disorder, Ehlers-Danlos, and finally, after full exome sequencing, malignant hypothermia and several pathogenic mutations of the RYR1 and SCN11A genes.
For three years, Sam worked with a team of specialists: gastroenterologist, neurologist, pulmonologist, cardiologist, urologist, endocrinologist, as well as sleep medicine, internal medicine, pain medicine and complex care doctors.
He went from weeks at Children’s Hospital to months in a recliner to inching his way back to an active teen life. Sam’s diet was limited and he’d regained very little weight, but as he left for college three and a half years from the day he’d gotten sick, he was active again and enjoying his life.
Then the phone rang in the middle of that icy February night, tears spilling the span of that long road north as I headed to campus to pick up my son. I pulled up in front of his dorm and texted him, “I’m here.”
Minutes later, Sam walked through the door, backpack slung across his shoulder, box of meds under his arm, and slumped into the seat beside me.
“Hey, Honey,” I said quietly, laying my hand on his shoulder. He didn’t answer. He didn’t have to. For awhile we drove in silence.
“I just wanted to be a normal college student,” he finally said. My heart jumped back three years to another conversation we’d had in the car while driving home from Children’s Hospital. “It’s true,” my son had said then.
“What’s true?” I’d asked.
“That you never know what you’ve got till it’s gone. I’d give almost anything to go back to before I got sick and really appreciate what I had.”
I didn’t have an answer for my son then and I didn’t have one on that cold February night, the last night my son spent on campus. Two weeks later, in one of the most gut-wrenching moments of my life, we medically withdraw Sam from college and watched him spiral into hopelessness.
But Sam’s story doesn’t end there – in that place of “not yet,” in that long pause between what was and what will be.
Because God doesn’t leave us in the pause, but encourages us to:
“…rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” Romans 5:3
There is always more to the story.
Chronic Joy Ministry was born of that hope, born to remind all those in that long pause between what was and what will be that there is more to the story, so much more. There is RADICAL HOPE and COMPASSIONATE CHANGE. God doesn’t leave us in the pain of Good Friday or the desperation of holy Saturday. He knows Sunday is coming!
Hope is in the wings!
Our circumstances might not change, healing might wait just beyond the veil, but there is hope. There is always hope.
It’s why we published Discovering Hope. And why we’ve just completed the manuscript for Finding Purpose: Rediscovering Meaning in a Life with Chronic Illness.
Sam wrote the subtitle. They are words he is living, rising from the wellspring of his heart:
“I will find my purpose…I will rise like a Phoenix, and whether I burn steady and true for a long time or go up in a short-lived blaze of glory, I will fight through every day with as much fortitude, strength and honor as I can. I’m going to have some terrible days and I’m not ever going to meet the standard of ‘productivity’ normal people can. I’ll always have to be supported by those around me financially, physically, emotionally, and even spiritually, for that is who I am, but I am not a burden. I am not useless. I do not suffer in vain. For whether my voice spreads to thousands or to just one, after meeting me you will never be the same.” Sam Re
This is why Chronic Joy Ministry matters.
Will you GIVE TODAY to remind all those affected by chronic physical and mental illness – like my son – that their stories don’t end in the pause, that Sunday is coming, that hope is in the wings?
Thank you and God Bless!
CINDEE SNIDER RE is wife of nearly 25 years to the man she loves most in this world, mama of five world-shaking creatives (15-24), author, photographer, craver of quiet, and lover of cotton, denim, Jesus and tea. And she is co-founder of Chronic Joy Ministry, Inc. Cindee and four of her five kids have Ehlers-Danlos, dysautonomia and myriad co-existing conditions.