April 14 2010

Don Warner

I think every family who has a child with CF goes through a time when they have to decide if they want to be public about it – who they want to tell and how involved they want to be within the CF community. Many kids don’t want to be defined by CF or treated differently – which is how our daughter, Angela, felt.

So Angie had a “normal” life – at least as normal as it could be. Kids with CF humble me with their discipline and courage. Sure, Angie became discouraged sometimes, but I never sensed that she felt her life was unfair. For most of her life, Angie thrived. After being diagnosed at three months, she was not hospitalized again until she was 18. In high school, she was a cheerleader, an honors student, and had an active social life.

We worked with wonderful caregivers at the University of Minnesota. Dr. Warren J. Warwick believes in a very structured approach. He says, “You are always in preventative mode. Don’t skip therapies, even when you feel well.” My wife Linda and I helped Angie follow his advice. I was up at 5:30 every morning to get Angie’s 60-minute therapy done, and we had a similar routine every evening. IF she had a cold or more, we did therapy sessions three to four times per day.

We lost Angela when she was just 21 in 2003. She has complications with a bowel obstruction that led to surgery. Within hours of her surgery, she developed a sepsis infection that spread into her lungs. We stayed with her in ICU for 86 days, with her on the ventilator and heavily sedated. Family and friends visited daily to show their support and love.

During and after that experience, I decided to stop keeping a low profile. In 2003, we started the Angela Warner Foundation to support CF research. We started the Angela Brooke Warner Scholarship Endowment at the University of Minnesota in 2005, and completed the Angela Warner Children’s Memorial and Prayer Garden at Gethsemane Cemetery in Minneapolis in 2008. It is a place of comfort and peace for people who have lost a child and has a special area of dedication to those who have lost their battle with CF.

When Angela was diagnosed with CF, our world changed forever. But we had a full life too. Angie was her mom’s best friend, and Angie and I shared a love a sports and enjoyed our special walks along Laguna Beach. Angie was a wise soul, and during those walks over the years, we discussed everything from the stars above to the ocean life below, eventually sharing thoughts on life, mortality, and eternity.

You never completely get over the loss of a child. You learn to live with a broken heart, and try to stay connected to family and friends. That’s why I wrote my book, “Walks on the Beach with Angie: A Father’s Story of Love,” about our experiences. It details her 86 days in ICU, but primarily tells her remarkable story – sharing our reflections on coping with enormous loss and how to move forward with life. I hope that it can help other families who face similar challenges.