Maria Lees-Dunlap carries a large bin of items to her daughter’s headstone at St. John the Baptist Catholic Church Cemetery in Colerain Township, Ohio, and reflects on the objects inside it that remind her of her first child, Vivian.
“This is my, like, most favorite thing that I have,” she said, pulling out a three-dimensional frame. “This is a shadow box that was created the night that Vivian died.”
The shadow box preserves framed casts of Vivian’s fist and handprint, along with two beaded bracelets.
“There's a bracelet in here that someone made for her that she wore all while she was alive,” Lees-Dunlap added. “[They] made matching bracelets for myself and my mom and my sisters and my grandmas and some other people.”
Such acts of compassion were once a necessity for Lees-Dunlap, 39, who is an end-of-life doula, certified grief specialist and community liaison at Grace Hospice in Cincinnati. Her journey into that work began after Vivian died in 2012.
Vivian was born with a heart defect known as hypoplastic left heart syndrome. When she was three days old, doctors suggested her symptoms were the result of Turner syndrome, a condition caused by a partially or completely missing X chromosome that affects roughly one in every 2,000 to 4,000 infant girls. Lees-Dunlap had to quickly learn how to navigate the complexities of the medical system while dealing with the emotional impact of the diagnosis.
“So often, we go to our medical professionals and expect all the answers, and we treat them as if they're God and they can do everything and reverse anything,” she said. “And what I learned in that moment, and what continued to become very prevalent to me, is that they don't have all of the answers. That they are practicing medicine. They have a great skill set; they have great knowledge. But at the end of the day, they don't have the answers for every single thing.”
After learning about her daughter’s heart defect at her 20-week ultrasound, Lees-Dunlap started a blog, "God is Here," which detailed her experiences throughout her pregnancy and after Vivian’s birth.
“Writing that blog and being able to communicate everything that was going on inside of me was really so helpful and beneficial,” Lees-Dunlap said. “I didn't expect for it to take on the life that it did. I didn't expect for people to come out of the woodwork the way that they did to share something that they had learned on their journey with a child that had medical complexities. Receiving support from other moms, in particular, who had already experienced the death of their child, set an example for me on how to be present—even in my pain.”
Near the end of Vivian’s life, a conversation with a doctor opened Lees-Dunlap’s eyes to a painful truth.
“ ‘Maria, you are an amazing mom,’ ” Lees-Dunlap remembered him saying. “ ‘You have loved Vivian so hard. But sometimes, in medicine, we walk a fine line of doing things to someone and doing things for someone, and we've crossed that line.’ ”
Vivian died on Sept. 21, 2012, at just 59 days old. After her death, Lees-Dunlap felt a call to action.
“Truly, when I left the hospital without Viv, my heart was aching to find purpose, really, in the pain, and I knew that I couldn't unsee the other families that were struggling in the hospital,” she said.
That awareness inspired Lees-Dunlap to start a nonprofit called Vivian’s Victory (later renamed Reviv) to support families of children with significant medical diagnoses. Over a 12-year period, the organization helped 16,000 families in the Cincinnati area and from around the world. As a next step, Lees-Dunlap wanted to continue helping people in a personal and direct way, so she became a death doula and grief specialist. Now she supports individuals and families who are navigating end-of-life transitions, helping them understand how hospice care works and how to make difficult decisions regarding treatment.
“It's very important for people to know that when you are enrolling yourself or someone you love on hospice, we're not coming in guns blazing, wanting to write you all these scripts for high doses of pain medication,” Lees-Dunlap said. “It's…how are we able to see where you are right now? How are we able to help manage those symptoms today?”
Helping others through grief is one of the many ways Lees-Dunlap has used her personal experience to uplift those around her. Now a mother to seven children — ranging in age from 5 to 12 — she has her hands full, but she still holds on tenderly to the memory of her first child.
“Grief is a funny thing,” she said. “We have this idea that we're going to get to this end goal or destination with our grief. We're going to be able to be done with it, then pack it up and put it away. And the truth about grief is that we can only grieve to the capacity of what we loved. Grief is present because love was there first.”
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