Inspirations: Raise a Hand for Rett

By Kevin Black (with Mary Chavoustie)

Photos by Kevin Black

Dave Clements (left) and Kevin Black created the book Raising a Hand

Every parent would agree there are no words to describe the loss of a child…or the perseverance needed to move forward after one’s world is shattered. Singer/songwriter Kevin Black knows firsthand the pain and struggle such a loss can bring.

The neurodevelopmental disorder known as Rett syndrome, affecting 1 in every 10,000 female births each year, took the life of Kevin’s daughter Cortney in 2002. Over the past 14 years, Kevin has chosen to channel his grief in honor of his daughter, traveling the country providing awareness and education through concerts and fundraising events – bringing the reality of Rett syndrome to the public.

The book, Raising A Hand, is a collaboration of the commitment of Kevin and his close friend Dave Clements to bring the visibility of Rett syndrome to the global forefront…in hope that with increases in research funding, a cure will soon be found.

In honor of Father’s Day, Kevin shares his deeply personal story with Postcards.

It was late February 1986, and spring was on its way. It’s the time of year when nature brings the promise of growth and freshness, along with all the beauty God paints. Something else very exciting was on the way, our firstborn child—a precious little girl we decided to name Cortney.

It didn’t matter to me that things were going to be pink instead of blue, or that there might be a dance lesson instead of a football practice. We were just happy to be blessed with a healthy, beautiful child.

“Look at her! She is making such wonderful strides, walking and talking, hand-to-mouth with her favorite foods…” At the time, we enjoyed every milestone. But then came a sense of alarm as her growth process appeared to progress at a slower pace. Her vocabulary started decreasing instead of increasing. She would throw uncontrollable tantrums anywhere, at any time.

Cortney with her Uncle Clint

Doctors told us she was “lazy” and would outgrow it, but the fact is, it got frighteningly worse. We were losing our child to something we didn’t understand. All of the motor skills and social skills she had obtained slowly regressed to the point where she no longer even said “Mom” or “Daddy.”

She was losing the ability to pick things up and, if she managed to, she couldn’t get them where they needed to be. Soon everything about our beautiful Cortney came to a screeching halt. No more walking, no more talking, no more eating.

The only communication between us was through her eyes— it was the only way I knew we hadn’t completely lost her.

It’s so very painful to have your child look at you, begging for help, through her eyes. It was living hell to not understand what was going terribly wrong with our baby girl…and why.

Fortune finally fell upon us when we discovered a place called the Blue Bird Circle group of physicians, and Cortney was very quickly diagnosed with Rett syndrome.

As time passed, things continued to get worse. The older she became, the more she returned to infancy.

Her body deteriorated with every passing day, increasing the amount of medicines she relied on to sustain what was left of her. We still held on. She cried to let us know when she was in pain. She smiled giving us hope that she was happy and comfortable. Her eyes twinkled when I walked into the room, as if she wanted to shout, “Hello Daddy, I’m so glad you’re home!”

Her eyes also damaged my soul when they showed the suffering when days were unbearable. The medical conditions that followed due to the continual collateral physical damage finally took its toll.

Cortney lived with major complications throughout her life. Then, we lost her at the age of 16 due to the horrible complications of Rett.

My relationship with God had changed drastically over the years until something happened that gave me faith again. I somehow managed to free myself of the blame for Cortney’s suffering, and I released the taxation on my soul that made me feel she was being punished for my sins. To this day, I still question God’s motive, even though I have made peace with Him in this regard.

I began believing Cortney was given to us for a purpose and, little did we know at the time, it was going to add a path to my life. I came to a fork in the road and, rather than selecting one, I chose to travel both.

We had to go on with life for the sake of our two healthy sons, Marshall and Coleton, whose lives were largely affected by Cortney’s disorder. We tried to create the best environment we could for the boys, but the simple truth is life is much different with a child that is totally dependent on Mom and Dad and help from extended family.

Clint Black has used his voice to become one of the main champions for the Rett cause.

I was then, and still am, in the music business, as are two of my three brothers, Brian and Clint, along with both of my sons. Clint became a worldwide household name and, since Cortney’s death, he has used his voice to become one of the main champions for the Rett cause.

Clint’s voice will continue to be heard loud and clear until we have educated as many people as we possibly can, and until we raise enough research funding to wipe out Rett syndrome. We will do it for the girls. We will do it for their parents and for their siblings. And I will do it, personally, because it’s part of the path I chose at my life’s crossroad.

With the help of my friend and fellow dad, Dave Clements, and our tireless team of volunteers, we created Raising A Hand, what we call ‘a photographic music festival with a cause.’ The beautiful coffee-table style book gives readers a front row seat to over 200 musicians “raising a hand” during their stellar performances, captured through the lens of a camera. Although Dave photographed the majority of the artists, I feel privileged to have contributed a variety of photographs. We are grateful that each artist has given his or her permission to be an integral part of the book.

Raising one’s hand – a simple gesture so often taken for granted – is desperately yearned for by many Rett parents who, day-by-day, watch helplessly as their daughters struggle even with the simplest tasks. Raising A Hand features heartfelt interviews with several Rett families whose daughters are lovingly known as “Silent Angels.”

Raising A Hand was created over a period of three years as Dave and I photographed musicians across the U.S. Once back home, we combined our photography skills with the expertise of Lead Writer/Editor Connie Strong and a team of talented professionals to bring the 231-page book to fruition. Proceeds from book sales will help raise awareness and fund research for the often unknown, yet life changing, neurodevelopmental disorder.

I sincerely believe we will win this fight to find a cure for Rett syndrome in my lifetime. I will fight with my last breath. And then, joyfully, I will be reunited with my daughter and once again get to hear my Silent Angel say, “I love you, Daddy.”

Kevin Black is an award-winning musician whose concert career spans the globe. His song “A Tear for You” (Kevin Black: SOLDOUT Live at Dosey Doe) is written as a tribute to his daughter Cortney and is included as a complimentary download within the book, Raising A Hand. To obtain a copy, go to raisingahand.com.