Last weekend, in sub-zero temps, my family traveled north to Boston. It had been seven years, exactly, since the time we spent there when my son Griffin was born. It was a weekend to feel all the feels.
My husband is running the Boston Marathon this spring in support of the Ethan M. Lindberg Foundation team, Team Frannie. Our connection with the Foundation runs deep. Over seven years deep, if anyone is counting. They were the moms who connected me to other moms in the early days of Griffin's diagnosis, when my belly swelled in front of me and his heart was the size of a grape. I've followed the stories of so many heart families supported by this foundation in big and small ways.
The four runners on Team Frannie were in Boston together to film a video capturing their own stories of connection to congenital heart disease (CHD). The families of the runners were invited to participate too. It's hard to put words to the feeling of being in the same physical space as these families, all touched deeply by CHD, who have chosen to put their energies towards helping other families. Well, and towards running many, many miles. Several of the moms with us last weekend, including Ethan's mom and Frannie's mom, have lost their children to this disease. So yes, there is a great sadness. And, there is also a great hope. A great light. That from the deepest, darkest place a tiny seed can be planted. It may take a long time, but that seed can grow. The sprout may be tiny and it may be surrounded by grief, but still, it can grow. These families are a living testimony that the from the deepest pain can come the most beautiful joy. And yes, that joy is tinged with sadness, because life is both, not either or.
The memories of being in Boston for Griffin's birth came rushing back. I have visual memories of that time and visceral memories that I feel in my body. There was so much uncertainty, deep, never-ending uncertainty that we had no choice but to manage in the moment. And now, seven years later, we have this joyful, endearing, sweet, sweet boy. Who still has not had an open heart surgery.
We are so grateful and happy for Griffin's outcome. And I am so affected and saddened by the losses of other families. Again, it is both. I hold both of these thoughts together anytime, literally, anytime, I think of Griffin's journey. There is still so much uncertainty, but I have become much better at dealing with it and of course the intensity is not as strong. I think, well, actually I know, I am a better person for facing it and turning it around and around to examine every day.
Our stories don't end. I will likely keep rewriting my story of being a heart mom for the rest of my life. There is hope in that for me. That our stories can always be changed, they always will change. And that we can influence them, we have that strength. We can reach out to another mom to share what we've learned, we can choose to advocate for a cause we believe in. We can nurture the seed planted in the dark.
p.s. One of the highlights of the work of this Foundation is a retreat for mom's who have lost a child due to chronic illness. If there is someone you know who might benefit from this retreat, please pass along this info. Moms are the backbone of our communities and we need to support them. http://www.ethanlindberg.com/retreat/