We met Gage Bingham, the eight-year old grandson of our cousin, the other evening. Although he was playing with his Star Wars Lego when we arrived, he greeted us and made us feel welcome. We came by to have dinner with Gage, his parents (Stacy and Jason) and his brother (Hunter) and catch up on our visit last summer to their home in Haines, Oregon. Gage’s sister Lindsey was there when we arrived but left shortly after to babysit.
We ate at a local cafeteria allowing everyone to chose their meal and it was burger and fries for the two young men. During our meal we all shared our connections to each other as well as our life experiences and aspirations for our individual and collective futures. Gage and Hunter dove into their burger and fries and toward the end fought for the last of the fries on their plate. Hunter shared his love of baseball and Star Wars and was surprised we had only seen three of the Star Wars movies and was willing to share the stories we missed. Gage defended his fries and talked about some of the recent videos he watched. We really enjoyed getting to know Gage and his family better through our shared conversations.
As dinner concluded Gage indicated that he was tired but still up for watching a video or two before bedtime. His tiredness is due in part to that fact that Gage like two of his sisters suffers from dilated cardiomyopathy a condition that causes enlargement of the heart, usually starting in the left ventricle, the main pumping chamber. This causes the heart to pump inefficiently and can cause irregular heartbeats, blood clots or sudden death. Sierra and Lindsey, Gage’s sisters have had heart transplants and are doing very well.
After waiting 512 days, during which he was on an artificial heart, Gage received a donor heart last month. Thus, we were visiting him at the Lucile Packard Children’s Hospital on the Stanford University campus where he and his family have been for 17 months, residing at the Ronald McDonald House.
Over the 512 days the family has endured being apart for many of the days with Stacy staying in California and Jason traveling between eastern Oregon and Stanford. They have been able to all come home for a few days over that time acknowledging that, with the availability of a heart, they would immediately return to the hospital. The family has made many trips back and forth; spent many nights without the entire family being together; experienced many days of not being able to see each other’s activities; and missed too many days of experiencing the joy of togetherness.
Gage is doing better although he does experience occasional set backs – Stacy and Jason share updates frequently on their blog and keep many of us informed of his activities and progress. They plan for the entire family to return home to Haines, Oregon this June or July and be able to enjoy the benefits of being together. This is not the end of trips back to the hospital at Stanford as Gage will return monthly; and Lindsey and Sierra travel quarterly for check-ups and biopsies to measure their progress.
The family refuses to be defined by the illness and through all of these challenges Stacy and Jason, could not be more proud of their children. During our dinner they shared about Sierra’s job at a local ice cream parlor and how excited they are that she will be a senior next year; told us about Megan and her school and athletic activities; acknowledged how Lindsey was growing up and was babysitting that night; indicated how much they enjoy Hunter’s activities and excited that he is playing baseball this season; and that Gage is a progressing in many ways.
Stacy and Jason talk about their blessings not their challenges; they share their love for each other and their admiration of the doctors and hospital staff; and they focus on the gifts they have rather than problems they encounter.
As we departed that evening we reflected on how Stacy, Jason and their family respond to their challenges and that we have never experienced such love, commitment, dedication, courage and caring.
At a time when there is too much divisiveness among us, the way that Stacy, Jason and their family address challenges is a model for all of us to focus on the things we can control, love those close to us, understand the feelings of others and commit to the courage and caring they daily demonstrate. Loving life is a commitment we can all make.
We are organ donors and encourage readers to formally sign up (on line at organdonor.gov) so that others like Gage can access organs to stay alive.
For more information http://www.nbcnews.com/dateline/heart-troubles-forever-haunt-oregon-family-s-five-children-n496646 and review the NBC Dateline feature on the Bingham Family http://www.nbcnews.com/dateline/video/full-episode-where-the-heart-is-605384259650 to donate http://www.heartsforbinghams.org/