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…
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.
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)
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.
♥ ♥ ♥