I have dedicated my career to helping people with cystic fibrosis ever since my second child, Jonathan, was diagnosed at 8 weeks of age.
When Jon Jon was alive, my life seemed to revolve around his frequent hospitalizations and demanding care schedule. Even as a stay-at-home mom, I struggled to be there for him and to focus on my other children, Daniel and Bekah.
CF takes a huge toll on families. Your other children may, at times, pay a high price. Your thoughts, worries and prayers focus on the needs of the one child. And even though you give it everything you have, you may still lose the battle.
Jon Jon, the boy who could play chess by kindergarten and poker by first grade, who loved big dogs and girls with long hair and who, more than anything, loved to make people laugh, died in 1993 at age 11. How could death swallow up someone so full of life?
The loss of my son felt at times like more than my heart could take. We as a family hurt and we as a family grieved. Over time, I found the loss changed me as I became committed to seeing this disease cured. I wanted to be a part of the solution. Within six months, I enrolled in classes to prepare for nursing school.
Health care professionals kept our family's heads above water so we didn't drown in the sorrow. They helped me cope -- which in turn enabled me to help my surviving children. When I considered becoming a nurse, I thought, “What an honor to be part of such a high calling.”
My first nursing position was on the general medicine floor at St. Louis Children's Hospital, where I took care of many children with CF. I didn't share my personal story with the families. I didn't want it to be about me -- I wanted the focus always to be on them.
Eventually, I was hired as a cystic fibrosis research coordinator at Washington University School of Medicine (Wash U.). I was part of a team that was busy doing what I had been praying for, for so long. When Jon Jon was diagnosed, there were no CF-specific drugs. There was little evidence-based medicine. At Wash U., we did the Kalydeco study that brought what some call a “wonder drug” to market. I can't tell you what it meant to me to make real progress on this disease. I know firsthand that real people need real drugs, and they don't have time to wait.
Today, I serve as the director of clinical trial affairs at the CF Foundation, where I help support the 82 CFF-accredited Therapeutics Development Centers and the clinical trials team. I remain highly motivated to make a difference. By the time I retire, I will have seen the ball move forward in meaningful ways. I know we are helping to answer the prayers of mommies, daddies and grandparents. It's a privilege.
Having spent my career working for a cure, I'm still not content. I want to remember Jon Jon in a more enduring way. I don't want his name to be only in the hearts of those who loved him and on a gravestone. I want his life to stand for something more. I want to remember him in a way that makes a difference for others.
That's why I have made the CF Foundation a beneficiary of my life insurance policy.
When I pass away, I want my two surviving children to see that Jon Jon is remembered, too. For me, this gift to the Foundation meets a need in my heart. It's much greater than the money. It's the way to heal my heart and bless my children.
We hope you too consider making a legacy gift. It's easy to do, and the CF Foundation is very helpful in the process. The Foundation offers a great (and free) publication called “Easy Ways to Leave a Legacy” that can help guide you if you also want to leave an enduring legacy. You can obtain this by visiting www.cff.org/legacygiving or contacting Tricia Benson, Senior Director of Planned Giving at tbenson@cff.org or 240-482-2845.
