2024 Walk to Remember — Opening Remarks

Hello, my name is Dr. Kristen Dillon. First, I want to thank the Massachusetts Center for Unexpected Infant and Child Death. I am both honored and heartbroken to be here today and welcoming you all to this event. 

December 29th, 2022 seemed like any other night. We put the girls to bed with lingering joy after a blissful Christmas. As I tucked them in, Junie, my 2.5 year old, stood in bed and reached for me with outstretched arms. She pulled me in for a hug or “1-2-3 squeeze” as we called it.  Little did I know it would be the last time I embraced my child. On the morning of December 30th she was gone. My vibrant, healthy child that I just had held tightly the night before had died unexpectedly in her sleep. 

How could life change so dramatically in 12 hours? How was it possible that everything that I understood about the world and fairness and life had come apart? I knew death and dying - after working as a clinical psychologist in hospice and palliative care for a decade, I know a few things about death and grief. But not like this. I was used to 80 and 90 year olds living a full life and passing peacefully surrounded by family. Not a child dying without reason or warning. So, on the day that Junie died, so many parts of me died too. The woman and mother that I was, was gone. As was my understanding of the world. My perspective shifted from a fair and just world, to that of a cruel and unjust one. And this new identity that had been thrust upon me had to navigate it.

 In spite of my shock and stupor, I knew I needed to access resources. I remember nesting in a large chair in my mother’s living room scouring the internet for resources and explanations. I outreached, I read, I connected and it was there that I learned about Sudden Unexplained Death in Childhood. Through foundations like Massachusetts Center for Unexpected Infant and Child Death, The Roberts Program at Boston Children’s, and SUDC I learned that unexpected deaths extend beyond infancy in spite of the fallacy that after 12 months our children are safe. Unfortunately, though the 4th leading cause of death among children between 1 and 4, a lack of government funding and a low public profile means SUDC remains unknown to most of society and the medical community.

As I searched for resources, beyond learning of SUDC, I also found a lack of therapists providing grief therapy, especially in the case of traumatic child loss. In addition, not only was I looking for one clinician, but four as I considered my mother, Junie’s father, and my 6-year-old daughter, Annaleigh. Though I knew how to access resources, this made the task of finding a competent clinician almost impossible. Again, fortunately with assistance from agencies like Massachusetts Center for Unexpected Infant and Child Death I was able to secure clinicians seasoned in child loss for each of us.

 As I navigated my grief, I remained shocked at various aspect of my experience and trauma. Until losing Junie, I truly knew nothing of grief. Nor did those around me. They floundered and faltered as they tried to conjure words and ease my pain. What they didn’t realize was that wasn’t their job. All I needed from them was to sit with me in the depths of my anguish and as I tried to rebuild what semblance of my life I had left.

 In grief, I realize that there are emotional grievers, who need to process and explore and instrumental grievers, who need to be task oriented and focused. I found myself leaning into both. I created rituals around me, much like we are doing today, honoring Junie in whatever small ways I could - doing acts of kindness to honor her joy, listening to “Hey Jude,” nightly as my precious girl thought the song to be “Hey Junie” and sharing memories with her sister allowing us to keep her present and near. 

 I told Junie I’d move mountains for her and so I looked for grander ways to honor her and preserve her legacy. I had the idea for a memorial playground, and with the support of an amazing community in Chelmsford, I was able to raise $153,000 in 9 months to fund an inclusive expansion to Junie’s favorite playground. Junie’s Place at Friendship Park opened on October 6th, and watching Junie’s friends and other kiddos storm the structures after the ribbon cutting was a most memorable occasion. 

 Given my personal experience and as a way to honor Junie’s deep care and consideration for others, I also founded Junie’s Place, Inc. A nonprofit that will provide no cost bereavement counseling and support to families experiencing child and infant loss or in the case of miscarriage or stillbirth. Beyond providing much needed counseling, the mission of the nonprofit is to support and educate communities surrounding the griever, ensuring that no one has to grieve alone. 

 So here we are, together, lifting our children up and not grieving alone. IlWe also recognize the importance of funding organizations like Massachusetts Center for Unexpected Infant and Child Death, to not only support grieving families, but also prevent these deaths from occurring in the first place. I know the fire in my belly that ignited for Junie burns within you for each of your children. And if this gathering today inspires us to devote even more energy to this cause, then we will have accomplished a truly lovely thing. 

 I remain grateful to Massachusetts Center for Unexpected Infant and Child Death for bringing all of us with aching hearts together on this beautiful day to honor our children . I’ll now invite all of us to say the name of the child we lost together on the count of 3. 1-2-3. 

 Thank you.

- Dr. Kristen Dillon