Dear Heart Community

Since it's Heart Month, I'm sharing some of my heart with the community I've been apart of for 13 years and whom I serve daily. 

Dear Heart Community,

We are long time, dear friends. You took me in and made me one of your own when I was 29, pregnant with my first child, and scared out of my mind. I thought I’d have healthy children, I never considered I wouldn’t. The moment I learned my son would have HLHS, you came along side of me and let me know I was not alone. When my dreams of bringing my son home from the hospital days after his birth and thinking his biggest “owies” would be his vaccines were dashed, you were there. You shared your stories, your children inspired me and gave me hope for my son Ethan.

When I grasped that my experience of motherhood would not be typical, you reminded me yours was not either. You made me part of something bigger than just my story. I grew up with you. I became a mother amongst you. I learned from you. I leaned on you.

When I became part of you, I did not realize I would love you so. I did not realize I would meet countless children who would thrive and also way too many who would die. I did not realize I would cry so many tears because I love your children like my own. The first year of Ethan’s life 13 of our children died. I counted each one and remembered them by name. I still remember their names. I kept following along as their mothers wrote of grief. I wondered how they could get through it. Maybe I wondered how I would get through it, if IT would ever happen to me.

I clung to hope, to research, and a future that would be brighter for Ethan. I learned to fight with knowledge, and advocacy and grit. I agreed to new approaches to HLHS. I traveled far for Ethan’s care, I entrenched myself in every detail of his story. When I spoke about Ethan, those who did not know me, asked if I was a doctor or a nurse. I believed all we were doing would pay off, pan out, and forge a long life for Ethan.

Then he died. I spent 7 years raising him, giving him my whole heart to try and make him better. I put my professional life aside, I gave up dreams, our family gave part of our future, we sought the best care, we loved and loved and loved some more. We came up short. And I wasn’t sure I fit in this community any more. I wasn’t sure I had a place.

But I couldn’t leave.

Because I knew my harrowing experience could make it better for your children.  
So I spoke up. I felt it was my calling and Ethan’s purpose to love you and to fill in big gaps.
I’ve tried. And I realize that I’m a reminder that kids die and that even the best care does not always work.
And maybe that’s hard for some of you.

Last summer I attended a meeting where cardiologists, nurses and parents gathered to learn and discuss how to improve care for children with HLHS. It’s a powerful group. During a breakout session I sat at a table amongst parents. We all discussed the mental health challenges and realities we face parenting a child with complex heart disease. We discussed PTSD and how to offer better support.  A sweet, pretty woman and heart mom to my left said (in so many words), “I don’t want advice from parents whose children have died. I want to talk to parents whose children are doing well. I want hope”.

None of us sitting at the table knew each other’s stories. We just wore tags displaying our names and home heart center. She didn’t know my story. I didn’t know hers. I took no offense, because she meant no harm. She was just being honest. And since I used to be her, I got it.

As the weekend progressed, you, my heart community, asked how old my son is. And over and over and over again I had to say, “he died at 7 years old”. You looked at me with a mixture of pity, sorrow and a look that said you didn’t want to know that. You wanted hope.

One colleague said to me “It’s so great you are doing those grief retreats for moms". I felt like my contribution was relegated to the grief corner that everyone tries to avoid. That all my other work was unseen.

And I wanted to leave and never come back. As I flew home, I thought, “maybe it’s time for me to leave, to be done with this community.”

But here’s the truth. You have a lot to learn from me, from moms like me and from parents like us. Those of us whose children have died have nothing left to loose. We can be honest, we have perspective. For some of us, things have not gone so well. We have regrets. We’ve paid the highest price so our doctors could learn. For some of us, our children were so sick and there was nothing left to do. Science did not catch up in time. We had to make the ultimate decision to let go. After fighting and fighting, we had to stop. There is nothing more heart wrenching than that.

You see we no longer have allegiances that temper our words. We have perspective that only comes from the place we are sitting right now. We love you. We want to share what we have learned. We want to teach and make it better for your children.

I hope that you will make more space for those of us parents who have so much teach you. And our precious kids, now in Heaven, have so much to teach you too. Progress comes when we look at things that did not go well, and we do something different. Our children call for more research, better techniques, regenerative medicine, improved decision making, better thinking. We call for it too. Our bodies, minds and spirits cannot erase what we have seen or experienced, and we don’t want it to. Because we are heart moms and dads, forever.

And so I will stay. I will stay and fight and advocate. But mostly I will stay and love. I will look for the ways that I can make your journey a bit straighter and smoother. I will ask others to do the same. I will challenge you to change, to evolve, to see things differently and to offer better, more targeted support for families.

May we no longer relegate each other to our corners of the community based on where our child is treated, or what their course has been like, or if they are alive.

But rather may we see ourselves in each other. And in turn may we do work that matters, that changes, that loves, that risks, that moves this field forward. Work that honors all our stories, experiences and children, whom we love with all our hearts.