It’s been 8 years since Jenn and I said good-bye to Graham and yet the tears pour as I think about what our lives would have looked like as a family of four and what Reece’s life would have looked like with a twin brother. They say time heals all wounds, but losing a child does not leave a wound, it leaves a hole, in your heart that never heals.
Much has changed since we started Graham’s Foundation in 2009. We understand so much more about prematurity, and how difficult it is to implement best practices in NICUs and the difference that the collective parents’ voice could make while in the NICU and after we take our babies home.
Sometimes I get a bit depressed with the gap between how much of an impact Graham’s Foundation is able to make today versus the needs that preemies and their families have. But for those of you that know me, you know I don’t stick around in that negative mindset for long and ultimately, it only adds fuel to my fire.
The core focus of Graham’s Foundation has been supporting parents of premature babies throughout their journey and that will continue to be our primary areas of focus. In fact, we have an ambitious goal for our care package program, a goal of delivering at least 15,000 care packages annually by the end of 2016.
There are two areas that we will be adding as components of our long term vision and mission.
One area is Parent Advocacy. Parents that have been through the journey of prematurity have a unique opportunity to help shape the future of care for our preemies and for us, too, but we need to more effectively use our collective voice to impact change. For those of us that have preemies that are entering their school years, we know that there are many unique challenges to get the help our children need. Since prematurity is an occurrence, not a diagnosis, we struggle to qualify for the help our children need.
The other area is Research. Money is being invested to try and reduce prematurity. Unfortunately, little is being invested to produce breakthough solutions that will improve the medical and developmental outcomes for our preemies. That needs to change.
Over the coming months we will take steps to engage with our preemie parent population to better understand how you see prematurity, the issues that you’re facing and the opportunities to impact change that will improve the long term outcomes for our babies and families.
If Graham had lived I doubt I would have the same burning desire to make a difference. It is simply the nature of humanity. Our greatest pain can produce the biggest impact when channeled appropriately. As I remember my loss, not of what was, but what might have been, I can take some comfort knowing that I am doing my all to demonstrate that life’s true measure is not the days lived but the lives touched.