This week’s story is a flashback written by my friend Cindee five years ago. Many of us are not just walking the Gauntlet on our own. We have genetically passed the DNA glitches to our children and are navigating this painful journey with them as well. It is heartbreaking to see them suffer. In families like Cindee’s and my own, there may be a sibling who has been spared. All the guilt and gratitude the well child feels along with fear and sadness for their brother(s) or sister(s) swirls into a vacuum of physical and emotional pain we never could have imagined.
God brought Cindee and I together last fall in the most beautiful place at the perfect time in both our lives. Her kindred heart is treasure. She has faithfully covered me with her prayers and words. During my last plasmapheresis treatments she sent me a card with a poem every single day. Before my last surgery she filled an entire journal with handwritten quotes, poems and verses. They continue to be balm for the wounds of my soul.
Today Cindee is at appointments all day with her daughter Meg. They had PT this morning then four hours in the research unit this afternoon. Tonight they are helping genetics and their PT/OT clinic launch a brand new offering (Thursday Night Live) for teens with connective tissue disorders and their parents. This is what warrior moms do. We are not just fighting for our own children to have the most whole life possible but also for the ones to come after us. Will you please pray for my friend and her family today?
Even Giants Fall
By Cindee Snider Re
(This post was written about five years ago when Sam was 15 and about 2 years into diagnosis. Kyle was 17. The boys are now 22 (Kyle) and 20 (Sam). You may remember Sam shared his story here earlier. You will want to go back and read it if you missed it or are a new reader here.)
It was late Tuesday afternoon. My son Sam and I were driving home from Children’s Hospital. Traffic was heavy and although the radio was on, I wasn’t listening. Sam was. “It’s true, you know,” he said.
“That ‘you never know what you’ve got till it’s gone,’” he answered as the song’s chorus replayed in the background. “I never understood that before, never appreciated waking up and feeling good or being able to do whatever I wanted when I got out of bed. I just took it for granted, figuring it’d always be that way.”
Tears welled in my eyes as I struggled to find words to answer my son. In February, he’d been diagnosed with Eosinophilic Gastroenteritis, an auto-immune disease affecting his GI tract. He’d lost 22 pounds in ten weeks and spent time in the new acute care wing of Children’s Hospital. Sam’s illness had caught us off guard. He’d been a physically strong, able, active teen who regularly ate us out of house and home, and suddenly, overnight, he wasn’t eating at all and rarely left the house, rarely left the recliner.
Tuesday afternoon, four months into treatment, we were heading home from more appointments. “I’d give almost anything to go back to before I got sick and really appreciate what I had,” Sam continued.
His words sliced through my soul. “Oh Lord,” I prayed, “why does my son have to go through this? He’s only fifteen, such a hard age to be different, sick, unable to eat his favorite foods or go out to eat, and he never, ever complains. He just gets quiet and tries so hard to focus on something, anything besides the pain. This is hard, Lord!” I silently cried out. “And I don’t know if I’m strong enough to help him through this.”
My oldest son, struggling with similar emotions and rocked by the changes in his brother and their relationship, poured his heart out in song.
This is a song of my greatest friend,
The one whom I love and would die to defend,
Whose honor and loyalty have no compare,
A soldier in a battle, too much to bear.
I thought that you were unbreakable
That my faith was firm and unshakable,
But now I find that I was wrong.
There’s only one Being who’s that strong.
I can’t stand that you’re in pain,
And I don’t have the power to take it away.
It’s just too much for me to take,
That even a giant like you could break.
So hold on, Sam, this storm will pass.
Just hold on, Sam, this pain won’t last.
Hold on. Hold on. Hold on.
God’s got you in His Hands.
I feel like I’m dying on the inside,
And I’d rather run than face a lie, cause
When it comes to compassion, I’m hit or miss
But you stand and say that we’ll get through this.
And He’s watching, watching out for you,
Just have faith, and we’ll make it through
“Father, there are no answers, just questions and emotions and a family holding on in faith, knowing You’ll see us through, and that we’ll make it there together, hand-in-Hand, standing strong in You! Amen.”
About Cindee in her own words:
I’m wife of 23 years to an amazing husband and mom of five creatives — Kyle, 22, Sam, 20, Sarah, 18, Anna, 17, Megan, 14. We’ve homeschooled for 16 years — kindergarden through high school. Quite an adventure! Our oldest graduated from college (with honors!) in May. Our home is often filled with teens/early 20s I’d claim as my own in a heartbeat. I love words, photography, nature, hiking, cotton, denim, and tea. And I crave quiet. Four of our five (and me) have Ehlers-Danlos, a genetic connective tissue disorder, through which I’m learning the deeper the valley, the greater the joy. I live in hope, grateful for grace.
Cindee’s blog can be found at http://www.breathedeeply.org
SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at email@example.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.
Photography by Cindee Snider Re. Used with permission.