May 19, 2009
Peace has come
Last Saturday, our family walked in Great Strides Atlanta, a fund raising walk for the Cystic Fibrosis Foundation. There were hundreds of people there--families, friends, corporate teams, health care professionals--all walking for the same purpose. As I came onto the field before the walk started, I was overwhelmed by the amazing power of community, all coming together and working to solve what is still an incurable disease.
When we first found out that our son Peter had CF, the social worker said, "I know it's hard to see it now, but peace will come." The next months were a whirlwind of medication, treatments, doctor's visits, and many, many moments spent in sorrow, tears, or frustration at this horrible monster in our lives. Jacob and I have both had to come to terms with the fact that our son will die of this disease, probably before we do.
Any parent would want to stop that from happening. Any parent would want to believe that a cure would be found in time to save their child. But when we were first coming to grips with the disease, that sentiment seemed trite and unrealistic. The worst thing anyone could say to us was, "Medical science has come so far. They'll find a cure."
Now, it's different. First, of all, our son is doing well, remarkably well. He is a precocious toddler with all the energy and curiosity of his two-year-old counterparts. He loves singing, learning, dancing, eating, and watching Sesame Street. Aggressive medical intervention has helped slow down the degenerative effects of the disease.
More importantly, things have changed for me. I'd say the real turning point was after Jacob and I created our family's Great Strides video. I uploaded the video to YouTube then spent the better part of the day emailing friends and family for donations to our Great Strides walk. It was such an amazing feeling: I was doing something, something real, to change the outlook of my son's future. Family members, friends, even people we hardly knew donated to the cause and contributed to the over $590,000 that was raised on May 16th.
Part of preparing for the walk was getting to know the current facts about CF. That has also changed my outlook for the future. People in the CF community are beginning to feel more hope. A recent article in the New Yorker cites development of a a drug that appears to correct the basic defect of the CF gene.
This week I've been reading Alex: The Life of a Child about an eight-year-old girl who died of CF in 1980. The book is exquisitely written by her father, Frank DeFord (of NPR fame), and absolutely heart-breaking. While I resonate with DeFord's description of the pain and anxiety that comes from being a CF parent, I also feel relieved that Peter was born in a new generation of CF. Life for Peter is not the same as life was for Alex. Medicine has progressed: new therapies make those used on Alex seem crude. Early treatment and intervention have helped keep CF kids healthy enough to live into adulthood. The life expectancy of a CF patient is now 37 years.
Peace has come, but not because the reality of CF has changed. CF will still probably claim my son's life. Daily medication and therapies to manage the disease will steal hours of his life everyday. Much of my time as a mother will be spent taking care of his disease. But I am making a difference where I can: walking in Great Strides, blogging about my experiences, educating my family and community about CF, and soaking up all the love and sweetness of everyday life with Peter.