Your story doesn't end.

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/

Uncertainty

You can imagine my dismay when, about five years ago, an elephant sized uncertainty moved into our house. There was no invitation. At times it's almost undone me, crushed me by his weight. At times I pretend the elephant is not there. And at times I have taken the elephant by the trunk and marched it to the front door. "You are not welcome here! It's time to leave. Goodbye, good riddance!" I walk away from him, the elephant of uncertainty; I can see him leaving in my head, squeezing through the front door. I run to my office downstairs saying to myself please go, please go, please go. I imagine he's gone. I tell myself: Finally! We can move on! 

But when I come back upstairs to get a drink, he's still there. Hasn't moved an inch.

If you have children, I wonder whether you recognized that so much of it would be filled with uncertainty? Our first year with our first child was enough to question my confidence ten thousand times over. And then congenital heart disease, this elephant, entered my life during my second pregnancy. The king of all uncertainties in my book. The question of your child's health. Life in the balance. We had an endless stream of questions after we received the diagnosis. When his heart was still the size of a grape. Would he be able to run and play like his sister? Would he have a normal life span? How many nights would we spend in the hospital? And the biggest uncertainty - would he survive?

In the five years since the elephant took up residence in our home, I've gotten more comfortable with his presence. I understand he is not leaving. There are stretches of time where he shrinks to the size of a tiny forgotten Lego in the corner. It's not a complete shock to wake up every morning and see him sitting there, like it was for so many, many months. It's been an active process of noticing what works and what doesn't, this living with the elephant. I've learned that I cannot let my wandering mind stay for long in the space of my son's future. Recognizing that I'm torturing myself with unanswerable questions is a first big step. When I catch myself doing just that, I try to bring myself back to the present. Stare out the window at the tree outside my office. Make a cup of tea and feel the hot mug against my hand. If he's sleeping, go into his room at stare at his skinny, adorable little self.

I've found my heart community; other parents of children born with imperfect hearts. Turns out community is essential to coping with the elephant, because as much as your friends and family can try to understand what it is like, the ones who have been there just know. The night before my son was born, in a hospital 450 miles away from home, my husband and I found ourselves standing in a circle holding hands with a beautiful stranger, a heart mom I had been communicating with by text, email, phone. Just beyond our little circle lay her son in his crib; physical proof that it was possible to somehow survive this, to live. I don't remember the exact words she prayed that night, but I have drawn on the connectedness of that moment in many other uncertain moments since then.

Sometimes the elephant makes me weary and I assign more certainty to a situation than is actually warranted. Eventually the thoughts come back; it must be time for surgery soon. My son been so tired, so cranky, not himself. It must be time. I start planning in my head the next trip to the far away hospital. One of our providers will put me back in my place. "Rachel, you can't schedule an open heart surgery simply because you want it done before he starts kindergarten." Oh. I guess I can't. 

I'm learning, in those moments, to go easy on myself. Of course this struggle with uncertainty is hard for me. I am, after all, human, Type A and all. We all deal with personal uncertainties and societal ones too, constantly. Acknowledging our struggle, recognizing what is within our control and what is not, and finding community can be useful for elephants of all sizes. 

The agony of uncertainty will always have a place. It's up to us to figure out how to live alongside our uninvited guest.