Last Saturday night Rick and I had the honor of attending the JDRF Rock the Cure Promise Ball. It was a fancy affair, and I enjoyed the opportunity to peel off the yoga pants and sport an actual gown. And see Rick in an tux. Yes. He is hawt.
Our new digs also inspired a lot of Rock the Cure group selfies and fun pictures with friends….
Photos above provided by Stefanie Marco, KINDSPIN DESIGN
As you can see, I had to practice the poses, as I had to impress Bret. He and are are true besties now. Rock on!
*Photo Provided by JDRF
We went to Rock the Cure in honor of some of our favorite people in Connecticut. The Christensen family and the Poulin family bonded last year at the humid indoor pool, where Jessica and I spent several hours a week on the butt-numbing bleachers while our older kids were at swim team practice. We both have little ones who sat with us… her son Jack, and my little Stella.
I remember the day Jess told me she was worried about Jack, who was suddenly mad-dog thirsty and peeing every ten minutes. It was totally justified worry, it turns out, as Jack ended up in the ER the next day, Valentines Day 2013. He was diagnosed with Type 1 Diabetes (T1D) and the Christensen’s life course was radically altered.
Type 1 diabetes is an autoimmune disorder that attacks the pancreas, and halts the ability to produce insulin, the hormone that metabolizes fat and sugar in the body. T1D is a life threatening disease.
Suddenly, Scott and Jessica, Jack’s parents, were thrust into the unwelcome role of acting as their son’s pancreas. This includes regular finger pricks to test the blood, adjusting glucose levels by giving shots of insulin or consuming more sugar. They had to become experts in nursing, nutrition, endocrinology, and Worry. And through the past year, they have launched themselves into actively doing all they can to help find a cure for their little boy.
The Promise Ball was an incredible night. It was conference center full of men and women whose lives have been touched with T1D, and peppered with beautiful children. Many of them had ports taped to their arms, a badge of their courage and vulnerability. There was a palpable spirit of camaraderie and generosity that I have never witnessed at this magnitude, and it was deeply moving to be a part of it.
Photo Credit: Stefanie Marco, KINDSPIN DESIGN
After listening to various experts share the advances being made in the research, Bret Michaels spoke about his own challenges living with T1D since he was a six year old boy. We got our 80’s rock on with Bret as he performed for us, including Poison’s legendary “Every Rose Has It’s Thorn.”
Photo Credit: Stefanie Marco, KINDSPIN DESIGN
Later, our friends got up in the spotlight to share their story.
As they spoke, I remembered a conversation we had last summer, about six months after Jack was diagnosed. We were sitting around their fire pit chatting after a delicious meal. Despite the darkening summer night, our kids giggling in the yard, and good company, I was feeling heavy. Filled with a dark, syrupy worry that stuck to my insides and made it hard to match the lightness of the evening.
Every rose has it’s thorn.
We all have our sharp, thorny parts, the pricks that will make us bleed, along with the beauty. And that night, I felt overwhelmed by my thorns. Misophonia had been escalating in our house to sanity threatening levels, (which you can read more about here and here). I was lost in my own sorrows.
We began talking about misophonia and T1D with Scott and Jess. I had sought comfort by expressing how everyone has painful challenges. Everyone has the hills they must climb to bring their children to safety and health and sanity. Theirs was T1D. Ours, misophonia…. drawing comparison to our mutual struggles as parents.
I remember the look on their faces in the firelight. They kept quiet.
I had been so, so wrong.
Watching them bravely presenting themselves on the stage for JDRF, outlining their heartache and their hope last saturday, their love and passion for their son was powerful.
They presented this amazing short video, highlighting their journey:
WIth the birth of each baby, I went through a phase of utter exhaustion that made my body feel as if it became one with any solid surface if I remained still for a few moments. Despite the numbing fatigue, I felt the overwhelming compulsion to watch my baby sleep, driven by fear that the length of time I closed my eyes would directly correlated to the length of time my baby’s breathing would cease.
Thank God that passes.
But for Scott and Jessica, it has begun again, in one eternal phase. The fear is real… the fear that one night while they sleep, Jack will slip away from them.
This is their new normal.
There is the scary day parents face… when we must leave our child in the care of another, trusting someone else to love and protect our baby… It is a painful loss of control for any parent.
But for Scott and Jess, they must ask his teacher not just to educate their son, but to be Jack’s pancreas too.
And did you know that blood sugar is affected by all kinds of things… not just the food you eat?
Swimming lessons, a family hike, a hot summer day, a fever, a bout of the stomach bug, a stressful day at school…. these normal, everyday occurrences can tip Jack into unstable territory for hours…. they teeter on the razor edge of worry, phone at the ready to call 911 as they watch him sleep and wait for his numbers to improve.
It is true, every rose has it’s thorn. But not all provide a prick that can take your child’s life.
I thought about that night around the fire, and how I wasn’t able to see this family clearly. I was bound in my own despair.
I had been blind to the realities of their crisis.
At the JDRF event, I was awash with gratitude for my own challenges. I have not been required to become a vital organ for my child. I am not living with the real and present danger that T1D presents for Jack.
The night provided Rick and I with the conviction to stretch and do what we can to help JDRF find a cure. As a recognition of my gratitude. As an acknowledgement of their struggle. As a path around our own wounds and a means to feel empowered by sharing what we do have rather than focus on what we may lack.
If you can, please spread the word. And donate here… even a small amount makes a difference.
It may soften the thorns you carry, too.
Photo credit: Stefanie Marco, KINDSPIN DESIGN
Hi there… Hello… Greetings…What’s up girlfriend… Hey sista… Dear mom with a child with Misophonia,
I tried any salutation to avoid the last one that repeated itself like a terrible two year tugging at my shirt.
I am a mom too with a child who has Misophonia. I am compassionate, patient and logical and capable of understanding things that have no clear answers. Well. Sortof.
Until Misophonia arrived I followed a narrow Christian road that lead me to peace, exalted me to a place I couldn’t explain but internally lived. By Gods beautiful Grace I was healed of MS, my agnostic child received Christ, and my stubborn husband didn’t balk at going to church. My worlds were colliding. And I finally saw God moving in they’re lives too.
Then my 14 year old began to act possessed. Ha ha Ha I say that lightly… But then again misophonia appears that way sometimes. My daughter would curse me, scratch me, punch me, berate me, and hate me all in the name of Misophonia.
At first when this new journey began she would shun me an coil up in a ball with pillows suffocating her ears. She didn’t understand why she felt the way she did all she knew was that I disgusted her and enraged her.
After a long angry stressful ugly process I accepted this condition has a brain disorder that my child could not control. It took for ever to convince her brother and her dad and her grandparents that this was really real.
I might be a big softy but I told Allie to not blame herself at all that it was this little glitch in her brain that was controlling her emotions. I’m sure that gave her a green light to blame every outburst of hers on the Misophonia but it was the only Christmas gift I had to give her to relieve her pain.
So back to my Christian journey. All I’ve been thinking about is “wussup with this Lord?” I mean the kid was just starting to pray and accept everything I have told her since she’s a baby. The family had seen miracles happen with me and smaller God things that they knew when not just coincidence. They were just opening themselves up to what I considered the only way to live life and they considered irresponsible and reckless but effective nonetheless.
Then the Misophonia arrived.