Last weekend Laura and I were out in Des Moines… We had a wonderful time at Ted & Bethany’s wedding. Their services were beautiful – they wrote their own vows and after sharing them with all of us, we know they have a lot to live up to. And I think that all of us who know them, know they are two people who will be able to do so…
And I got to spend time with Jenn and Kathryn, and had breakfast with Christian and Jenn & Kathryn's folks on Sunday – spending even a little time around Kari’s friends means so much to me…
We drove out in some crazy weather and wind on Friday night after work. Jenn had told me about her friend, who was one of Kari's friends, Carly. Carly and her husband have a beautiful little baby named Grant. Grant has cystic fibrosis like me. This is Grant:
On Saturday morning in Des Moines, and all over the country that weekend, the Cystic Fibrosis Foundation held their Great Strides walk for CF. Jenn asked me if I wanted to stop by and meet Carly and Grant. Duh… So, while Kathryn and Laura went to the mall for pedicures – I got to meet a new little CFer and his family and friends… Grant had a whole team of family and friends at the walk. His team is named Grant's Guardians...
I was diagnosed with cystic fibrosis in 1973 – on the day of my 13th birthday. It seems that ever since that time, we’ve always been told that a cure is “just around the corner…” In 1989, the gene responsible for CF was discovered – and that was a very exciting time with the feeling that a cure was imminent… That was 20 years ago. But, there really are exciting things in the pipeline now to treat CF, and a cure – or a treatment that would allow Grant to live normally – may happen in the near future. Life expectancy was in the early teens in 1973 – now, it’s moving towards the late thirties. I hope for Grant and Carly that, over the next few years they will be able to say a CF patient will have a normal life expectancy…
I hope that Grant never needs a lung transplant. I love my new lungs – I appreciate that I struggled for almost 40 years, because that reminds me, every moment, how precious it is to breathe like I breathe now. And I think of Kari always. I hugged several of her friends last weekend – at the CF walk and at the wedding and after. I love being introduced to her friends as, “this is Kari’s lungs!” I never imagined, during my CF years, that life could possibly be as good as the life Kari and her family have given me… Yet, I’d rather Grant didn’t go in that direction…
But if he does – I hope that Ted and Jenn and Melissa and I help to see that whatever gift he might need, is available when he needs it…
