A Story of Hope • Sam Re

“…we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.” (Romans 5:3)

SUFFERING PRODUCES PERSEVERANCE

The phone rang. It was 3 a.m.

“Hello?”

“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 17^th 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 into the waiting room, sat down across from my husband and me, and said, “I owe you an apology. Your son is far sicker than he presents.” Sam was diagnosed with eosinophilic gastroenteritis that night, and other diagnoses soon followed: spontaneous pneumothorax, dysautonomia, autonomic 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: gastroenterology, neurology, pulmonology, cardiology, urology, endocrinology, 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 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.

YOU NEVER KNOW WHAT YOU’VE GOT TILL IT’S GONE

 Then the phone rang in the middle of that icy February night. Tears spilled 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 a while, 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 that day and I didn’t have one on that cold February night, the last night my son spent on campus.

PERSEVERANCE PRODUCES CHARACTER, AND CHARACTER, HOPE.

Two weeks later, in one of the most gut-wrenching moments of my life, we medically withdrew Sam from college and watched him spiral into hopelessness.

Sam’s story doesn’t end 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, He 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 was born of that hope, born to remind all those in that long pause between what was and what will be that there is always 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.

That hope is why we published the first three books in our Thrive study series, the first book in our Abide series, and a small group-leader guide. It’s why we launched 11 ministry programs for children through adults, addressing the needs of all those with chronic illness and mental illness, those engaged in marriage, parenting, caregiving, and leadership, and those responsible for shepherding in churches. That hope is why we do what we do every day at Chronic Joy. Sam’s words are our reason why.

He wrote the subtitle for Finding Purpose, and these words – his why – words he lives into daily, words 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’ that 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 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, and that hope is in the wings?

Thank you and God Bless!