Seven years ago today, Jennifer and I had to say good-bye to our son, Graham. He and his twin sister, Reece, had to be delivered 15 weeks premature as a result of my wife becoming pre-eclamptic. Within days of losing Graham, I knew we would create a foundation in his memory. We were still riding the terrifying roller coaster called Prematurity but this purpose had chosen me and this was where I could make a meaningful difference in the world.
After three more months we finally brought our daughter Reece home. Three weeks later she was back in the hospital, needing emergency brain surgery. The roller coaster ride lasted another few years and now, seven years later, we have learned that it in some ways it is a ride that never really ends.
We started Graham’s Foundation nearly five years ago and we have been humbled by the opportunity to support thousands of parents who are on that same roller coaster of Prematurity. I will admit that there are times when it still feels overwhelming. Building an organization is no small task. It is difficult seeing parents going through the same challenges that we did and knowing that the healthcare system is not well designed when it comes to the parents’ role in the journey of Prematurity.
What is even more difficult is seeing so many parents go through the same experience of loss. I know our bereavement care packages, while simple by design, help bring a bit of comfort, but I wish I could sit down with every parent and give them a big, long hug. What is most difficult, and I hate to admit it but I know I am human, is the twinge of jealousy I feel when a baby born early like Graham comes home from the hospital. I am ultimately happy for the parents but it reminds me that Graham is in my memories, not here at home with me.
So it’s seven years later and I have so many questions about this roller coaster called Prematurity. I have discovered that it is way, way more complex than I ever imagined. The causes run the gamut but I believe that is yet another reflection of the magical mystery of life. As modern medicine continues to evolve I suspect that Prematurity will only grow in complexity not get easier. I do believe we can learn much from the natural flow of the universe and the beautiful forces of Mother Nature and what I have observed in that regard is when it comes to the creation of life, Parents are at the center of the newborn’s care.
I still have many, many questions, and have found few if any answers but I nonetheless have the same commitment I found in myself seven years ago: that no parent goes through the journey of Prematurity alone.
Perhaps there is a new way of looking at this roller coaster called Prematurity? Perhaps it is time to turn our entire approach, our goals, our measures and view on outcomes upside down?
I would appreciate your thoughts, comments and feedback. You’ll be hearing from me on a more regular basis, too. Wishing you and your family a healthy 2014.