When You Need Someone to Talk To: The JJMF Offers Connection and Emotional Support
As the parents of a child with a devastating disease, sometimes the best we can do, as I learned with June, is to love the child we have for as long as we have her. For us at the June Jessee Memorial Foundation, doing our best to help other families like ours can mean accepting that no intervention will enable their child to make it to adulthood. What we can offer is the kindness of strangers, a little assistance with the often mind-boggling expenses of a terminally ill child—and the knowledge that they are not alone.
We learned about Henley in August 2017, when a nurse practitioner on the Pediatric Advanced Care Team at St. Louis Children’s Hospital reached out to us. She wanted to know if I’d talk to another mother who was making quality-of-life decisions that were similar to those we had to make for June. Henley’s mother, Nicole Pulliam, really needed to talk about her experience with another mom who had been there and could help her gain some comfort with her decisions.
Our mission at the June Jessee Memorial Foundation is to provide emotional as well as financial support. For Nicole, emotional support was the greater need.
As she told me, Henley was born with a serious, life-threatening condition called Hydrops Fetalis, an accumulation of fluid in two or more areas of a baby’s body that can compromise many of the baby’s organs and systems. Henley was immediately transferred to St. Louis Children’s Hospital. For the first few days, her condition looked so dire that the doctors said she probably wouldn’t live long enough to make it home. But after three weeks in the neonatal intensive care unit, she was stable enough to leave the hospital.
Henley lived for two years, or as Nicole says, “Two years, one month, and 12 days, to be exact.” Her short life was filled with complicated diagnoses that no amount of therapy sessions or medications could improve. But she also experienced a lot of happiness. “Henley liked taking walks and taking baths. Most of all, she loved looking at the family Christmas tree,” says Nicole. “She enjoyed it so much that we kept it up all year long for her.”
Henley was placed on hospice about a month after her second birthday. Around the same time, the palliative care team connected her family with the June Jessee Memorial Foundation. We were eager to help. June’s loss was still quite recent, and I knew what it felt like to have a child on hospice. I wanted to be able to offer some support.
But it can be hard, as a parent of a child on hospice, to share your life with a stranger. Or even, sometimes, to make room for people you know well. “At first, I was hesitant to reach out,” says Nicole. “The thoughts you have when your child is critically ill are not always pleasant, and it can feel very isolating.”
Still, we connected, and wound up talking for more than an hour by phone the first time. We began texting frequently, about some pretty serious struggles. As she puts it, “Having someone to reach out to, vent to, and cry to provided me relief and solace during such an unimaginable time. I believe our girls and their curls are the best of friends up in heaven.”
I tried to share the insights with her I wish someone had shared with me. The amount of effort that goes into caring for a child like Henley or June is unbelievably exhausting, both physically and emotionally. And then there comes a point when you realize that no amount of care will save your child, and that her life will get worse, not better. The death of a child is supposed to be the worst thing that happens to us. But if you’ve watched your own child suffer, you know that death is not the worst thing.
I didn’t have a foundation to reach out to when June was on hospice. I did know one mother whose son had passed away from a similar health condition, and I felt thankful to have her to talk to. She was one of the only people I knew who understood our situation. Today, I feel grateful that I can be that person for another, the mother someone can vent to or cry to now.