Our mission is to increase equity in pediatric cancer. One of the ways we can do this is talk about not only the hope and also pain. This letter was created for our fellow bereaved parents and we know it could be hard to read. Thank you for your support.
Fellow Bereaved Parents:
We see you.
It’s hard to believe the last time we saw our little fourteen month old girl, physically, was one year ago. I remember holding her hand and holding her twin sister as our tiny room, filled with our family sang to you “Danny’s Song” one last time. She was there. Her little hand curled around my finger, and squeezed it. Almost to say, “I love you mom.” And, then, she made us laugh as she kept holding on for one more, and one more, and one more. Maddy always surprised us.
Then she was gone.
I remember the goodbyes of her body. Washing her with her Dad as we held hands, in shock, and also relief that she was finally in no more pain. With each stroke of the washcloth we washed her in love. She never did get to take a real bath, but loved to watch her twin sister and squeal with joy when she splashed in the bubbles. The smell of Johnson & Johnson orange baby soap still fills my heart and mind when I get a waif. It reminds me of Maddy.
Leaving that night felt like the strangest nightmare. How was it possible that just 14 months before I brought her home from the hospital when she was born?
Packing up the room was the hardest part. As her body lay, we put our things away. All of the memories of Maddy. What sheets to keep? What bottles? The room that was our sanctuary of hope became her grave.
Then, we left.
The walk home. A daze of dream-like strides forward to a world that no longer had her in it. And yet, I felt relief. That this awful, pain she was in was finally over. And, I wanted to give anything and everything to just hold her and be with her in our bed one more night.
Our beginning of a life of “ands” began. We live each day as devastated parents AND hopeful for the future of Maddy's twin, Hannah, and the incredible other families we get to work with each day.
We know it’s hard to be a part of this community that has some of the best people, and the club no one wants to be a part of. How you feel like you are constantly trying to lift up rooms. All you want to do is talk about your baby, and when you do, sometimes, it is truly a mood killer. Death is with us daily. Yet, our society is not prepared or ready to talk about it.
And, also, everyone is different. It may be too hard to write or talk about them. It might be too much to remember the pain.
We focus on the light. The love that Maddy gave us. The community she created. And, this was really hard for us to write because we want everyone to know that we stay lifted in hope and we never lost hope. And, we are sad.
We created Madelyn James Pediatric Cancer Foundation for our Madelyn James because she loved everyone. If we focus on equity in pediatric cancer, we can save lives. Maddy would play in clinic with the snail push car and her face would light up so much that everyone (no matter the child’s age) would start playing with her. At 12 months old, she was quite the leader of the pack.
The ultimate perspective.
We see you, members of our courageous community.
Creating a loving space for all who have felt the anguish of burying your child and also, finding space to create hope so no other family has to endure this pain is our mission.
By writing this letter, we hope it creates a space for you to know you are not alone. And, that we can have so many feelings at the same time: and that’s okay.
We hope one day, no parent will have to bury their child. That cancer will be cured. That we will live in a world that prioritizes the health of our children, no matter where you come from or how you identify. And, until we get there: we will be here for you.
In love,
Jackie & Dan
Co-Founders of Madelyn James Pediatric Cancer Foundation
