Waiting to Exhale

The calendar showed October 4th, 2012. She and I sat in the sterile office surrounded by semi-gloss light blue walls, our hearts thumping, hands like ice. We waited for the man who wore a white coat to join us, hoping he would provide gentle answers to appease our questions.

The matter was serious, but when I first saw his face, I thought of Santa, stark white hair and fluffy beard, red, rosy cheeks good for pinching. The only thing missing was the apple red hat, and though he would bear dreadful news, his smile was welcoming, as if the three of us were meeting for a stroll in the park on a lovely spring afternoon.

It was amazing how a tiny scope could be guided through the mouth and throat then down the esophagus. CT scans, lab work, MRIs, and a needle too long to discuss occupied her hours for over 1,000 days. Still, we craved clarity. Our world was hazy like thick fog a driver would endure crossing the Golden Gate Bridge during summer in the wee hours of the morning.
And we waited – a necessary evil that all people grapple with too often to count the times on their hands.

Then on that autumn day came words we would have liked to have hurled back to Santa. We had hoped for gentle. Instead…
“All tests point to this auto immune disease, and there is no cause or cure,” he told us with a touch of remorse. The future would necessitate a transplant. It was not cancer, but this finding should not be shunned. She was twenty years old, like a sunflower of friendliness and optimism. He added, “Just live your life.”

I felt her physical pain rip through each atrium and ventricle – my most excruciating moments of being a parent. But her strength embraced and consoled me, her mother, of all things.
Life pulled us through each season.

The calendar now presents the year 2021: She is a lovely, young woman – a wedding band adorns her left ring finger, and geography has changed along with a new insurance card. She meets with another man who wears a similar white coat. X-rays and jabs repeat. “All of your tests are normal,” he affirms. All is normal. Words we had hoped to hear from this new expert.
“I don’t see a reason to keep you in the same box,” he confirms.

This is amazing news! But abdominal stabs and pruritus from the past were as tangible as a twisted knife to the gut. How can we negate that agony? What is the deeper meaning? Should we get the champagne flutes out, give them a quick wash? Has this nightmare finally ended? She chooses to live in the here and now.
Life continues to draw us forward to witness each sunrise and sunset,
although we are still waiting to exhale.

Lauren Scott (c) 2021

Working on “Finding a Balance”

Dear Friends,

I am embarking on a new adventure and this is an introduction. My second poetry book, “Finding a Balance” is almost ready for publication and it’s nice to not be such a novice the second time around. This book isn’t just about sharing more poems I have written. It’s not only about me. It holds a deeper meaning; the new adventure part. The proceeds will be donated to an organization for a purpose close to my heart and my family’s. I’ll begin, though, with a back story…

Part I:
After three years of abdominal pain and ongoing tests, on October 4, 2012, our daughter, Stephanie, was diagnosed with Primary Schlerosing Cholangitis (PSC). She was 21 years old. Her doctor was the head of the Gastroenterology department and was extremely competent. He didn’t beat around the bush. He told us this wasn’t good. Below is a brief description:

Primary sclerosing cholangitis (PSC) is a very rare condition where the bile ducts inside and outside the liver become inflamed, leading to scarring, narrowing and blocked ducts, potentially causing a build-up of bile in the liver, and in some cases cirrhosis. Patients with PSC are at a high risk of developing liver cancer. Symptoms begin gradually with abdominal pain and itchiness and include worsening fatigue and, later, jaundice. Liver transplantation is the only cure for prolonged life. This is usually needed within 10 years of the diagnosis, but each patient’s case is different. 

I’ll try to keep the drama at bay, but I’m sure you can imagine our reaction. Our daughter doesn’t drink or do drugs so there is nothing she did to provoke this diagnosis, which is why it’s called an auto immune disease. This was a shock to our entire family. My husband and I had many emotional moments, wishing we could take her place. We were paralyzed of doing anything that didn’t need doing for the rest of that year, except for the necessity of living. We asked God why…why Steph? She has a heart of gold and is simply a nice, caring individual. Many have asked these same questions and there are still blanks waiting to be filled.

Since 2012, she has had symptom flare ups with several ER visits, but otherwise, on the outside, she’s beautiful and looks perfectly healthy. The doctor told her to live life to its fullest. That was his profound advice. She has a stellar attitude. She lives in the HERE AND NOW and there is no other option. She is due to graduate this year with a Bachelor’s Degree and has been busy with school, friends, her boyfriend and of course, family, with no time to sulk. She is human, though. She has broken down at times, but I think, as her parents, our score is higher.

So…I’m telling you this not for sympathy but to bring awareness to this horrible, slow progressing, life threatening disease and most importantly, the need for organ donors.  

Part II:

All proceeds from my book will go to The Chris Klug Foundation (www.chrisklugfoundation.org), also found on Facebook.
Chris (born November 18, 1972) is a professional alpine snowboarder. After receiving a liver transplant in 2000 to treat PSC, he went on to compete in the 2002 Winter Olympics in Salt Lake City, winning a bronze medal in the Parallel Giant Slalom. This was the first and so far only time a transplantee had competed in the Olympics. He also won a bronze medal and lit the torch at the 2002 National Kidney Foundation U.S. Transplant Games. In 2004, Chris released a book called To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder. (Wonderful book of inspiration and hope)

chris klug foundation

Below is an overview and mission of his Foundation:

Founded in 2003 by liver transplant recipient and Olympic snowboarder Chris Klug, The Chris Klug Foundation is dedicated to promoting lifesaving donation and improving the quality of life for donors, donor families, organ transplant candidates and recipients.
CKF is passionate about sharing the message of donation, and educating people on the impact one person can have on the lives of so many others. Over one hundred and ten thousand people are currently on waiting lists for solid organ transplants across the U.S.A. CKF is devoted to making a difference to those waiting for a second chance. We are also there to help promote the message of organ donation.
Working with young people across the nation, CKF provides campaign materials and information for “Donor Dudes” chapters in high schools and college campuses. People everywhere are touched by organ donation and transplants, and we want to get the message to everyone.

The publication for my book will be at the end of this month or beginning of February. I’ll do a separate post when it’s available and again, I’m very excited for this new collection to have a greater, deeper purpose.
Our life now is about “Finding a Balance” between PSC and all the good things!

Someday Stephanie will need a liver transplant so becoming an organ donor is an unselfish way of giving another soul a second chance. 

Thanks so much for reading and I wish you all Happiness and Good Health!
If you’re so inclined, prayers and positive thoughts
for Stephanie will be greatly appreciated.

Lauren
♥ ♥ ♥

Be

be free

Are you ready to smile?
How about a chuckle?

Say bye to the blues
and all your troubles
Forget your laundry
It never ends
So what’s the point
Call up your friends
Leave technology
it won’t forsake you
Its devotion is solid
and so very true
Shed the comfort coat
Give life a try
Reach with your “All”
You may touch the sky
Now dance around
for everyone to see
Don’t be shy
Be You, Be Free
Just
Be

LScott © 2013
Photo Credit: Google Images

🙂 🙂 🙂