I used to post quite regularly during heart month to try and raise awareness of CHD. Sharing our story to try and bring hope to other families or to raise awareness of research that might help other heart children. Sharing our experiences in Facebook groups to help other families going through similar experiences. I wanted to be able to help other families and to give them hope. After Jessica died, I stopped writing much about CHD. Our story was no longer a story that brought hope to others. And so I stopped sharing it.
Some time ago, I was asked to share Jessica’s story again. After I’d submitted it, I received a reply which said, “I’m so sorry, I didn’t realise that Jessica had died.” On one level, a simple message of condolence. But I also knew that it meant that Jessica’s story was no longer wanted.
We are the ‘club that no-one ever wants to join’; the side of CHD that many heart parents would prefer to forget exists. Our stories are often only shared in moments of remembrance and days that mark infant or child loss. A brief time for us to share our stories, and then we slip back into the shadows once more.
I used to share some of our experiences of Jessica’s heart surgeries when she was a baby to help others. However, I’ve not been able to do the same with her last surgery; her Fontan procedure. If someone posts a question in a Facebook group asking “did your child experience X after their Fontan?”, I can’t share our experience of that particular problem. Because what this question is really asking, what all these questions are really asking deep down, is “is my child going to be okay? Please tell me my child is going to be okay.”
No-one wants to hear that my child had a similar experience; not when she died three months after the Fontan. It doesn’t matter whether or not that particular experience might have had any impact on her death; the fact that she died is enough for my story to be terrifying. I can’t give them the hope they are seeking; I represent the fear that they try to forget.
It hurts sometimes that a community I was once part of is now closed to me in this way. That at the moment Jessica died, her story stopped giving hope to others. That even though she lived six and a half beautiful, wonderful years and lived as full a life as possible in that time, the ultimate message from our story is that she died. When you live with that deep-down fear that your child will not grow up, you don’t want to be confronted with the reality of children for whom that has been true. You want the hope of the ones that have reached adulthood, that are going to university, that are doing well.
No-one wants to be on this side of the heart family community. There are specific groups for those of us who are bereaved parents, of course, and while many of us are still part of the more general heart parent groups, we tend to be quieter there. Partly because our stories represent the fear that every heart parent lives with, and partly because sometimes those happier stories bring pain to us too. As much as I try to celebrate the milestones that my heart friends’ children reach, there will always be a part of me that feels so very sad that my daughter didn’t reach those milestones too.
Here on the dark side of CHD, in the bereaved heart parents community, there is love and support. We might not share our stories as easily, but they matter too. Our children’s voices are important; our children lived and were loved. Their lives had an impact; their lives mattered, and we need to have their stories remembered and their names spoken.
It might sound strange, but our stories can give hope too. When I first found out about Jessica’s heart condition and the prognosis looked very bleak, a former colleague messaged me to tell me about her daughter who was born with a heart defect, many years earlier. I knew she had lost a child, but I’d never known more than that. I felt touched that she’d chosen to share her daughter’s story with me, and the hope that since medical technology had improved so much; that my story might have a different outcome. The hope that my story might be different did help, but what helped me too was that quiet strength that came from a bereaved mother. A strength that gave me hope that should my worst nightmare come true, I could survive.
And here I am, nearly three years on. I won’t pretend that it isn’t agonizingly hard at times, but I have survived my worst nightmare and continue to do so each day. I miss Jessica immensely; there are moments where grief and the pain of having to live life without her is utterly overwhelming. But there are also many moments when the memories of life with Jessica brings smiles and laughter, and there are still moments of joy. Bittersweet moments of joy, perhaps, but moments of joy nonetheless.
Maybe it isn’t really that our story is an unwanted one. Maybe it is just that the focus of the story and the audience have changed. That instead of it being Jessica’s story of living with CHD, it is now our story of living with grief; of finding meaning in grief and being inspired by the strength that Jessica showed throughout her life. I can’t give hope to other heart parents as I once might have done, but I can help those who are living with child loss know they are not alone. And while Jessica’s CHD journey itself may no longer give hope, the book that I wrote for her to help prepare her for her heart surgery still helps other heart children who are about to have surgery.
Earlier this week, I shared a photo of Jessica on Instagram with a short summary of her story. That photo is one of my favourites. As is the case with many photos of Jessica, she is smiling her beautiful, radiant smile. A smile that is full of so much joy. A smile that clearly shows why her godmother once called her a “joy carrier”. One of the comments on that photo touched my heart. Five simple words: “Beautiful Jessica – still spreading joy”. It means so much to know that my little girl, who spread so much joy in her life, is still spreading joy to others nearly three years after her death. Jessica’s legacy is joy. And part of her continuing story, and my continuing story, is about finding that joy and sharing it with others. Not such an unwanted story after all.