A Story of Hope

CJRejoiceInOurSufferings
The phone rang. It was 3am.

“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 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.

SamHospitalFor 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.”

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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.

SamIt’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!


jbu_200-5CINDEE 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.

 

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Radical hope. Compassionate change. Equipping those affected by chronic physical and mental illness through community and education rooted in Jesus Christ.

8 Comments Leave a comment

  1. My heart goes out to you and your children. I’m blessed that my two children are well. I’m the only one in my family with chronic illness. I do have some trepidation about my son going off to college because he has Asperger’s (on the other end of the Autism Spectrum). But I leave it in God’s hands as I do with my own health issues.

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  2. Thank you for sharing your story. I pray God will continue to use you and your family for his glory despite all you have been and are going through. Thank you for writing from your experience. My heart goes out to you. Fortunately, I am the only one who is chronically ill in my family. I look forward to the new book. The Hope book really blessed me and helped me in my journey. This is not easy, and I cannot imagine how you do it with sick teens/young adults. I know God gives you the strength and I pray he continues to do so. God bless you xx

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  3. I believe it is more difficult to rise from depression when we are acutely aware of how much we have lost in a struggle with chronic illness. Praise God for being so ever present in our stillness and illnesses. My daughter suffers from gastroperesis, IBS and CVS (cyclic vomiting syndrome). My younger son left my home Friday evening to drive back two states away in the small covered bed pickup we gave him so he would have somewhere to sleep after his girlfriend finally had to kick him out. He was diagnosed with schizophrenia while with me but only had 3 days of the meds he needed from the ER to function . He refused to tell a family practice doctor about the diagnosis so all he got from her was anti-anxiety medication. Sunday morning a hospital in Oregon called. The social worker there had put a psych hold on him while trying to get him placed in a brand new behavioral health center in Portland. I’m praying it happens. Nathan is currently incapable of making a decision one step forward, let alone decide what his next step is. The hospital he’s in today is the fourth he stopped at on his drive north. He thought he was dying after every two hour trip on I-5. Panic attacks have his heart pounding, feeling as if it is coming out his chest. He had to get to the one he’s in before the passionate about her job social worker figured out he was in psychosis and wasn’t going to make it back to the Seattle area. This mom is exhausted from his visit here and the sleeplessness and worry and arguing that accompanied that visit. Please help me pray the psych hospital accepts him so that he can get the care and medication help he needs. Thank you for listening to my cry for help! I know God is because he put Nathan where he is at the right time for the right person. Again, a heartfelt PRAISE GOD IN THE HIGHEST! 💙

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  4. A very inspiring story. Thanks for sharing the hope and love you and your family have found in Jesus through your suffering. My thoughts and prayers go out for your son at this time.

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  5. Oh, Sam. Oh, Cindee. Thank you. Your story has actually touched a whole bunch of Countermans already. I am sure that it will continue to do so. Thank you.

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