Ben and Lara Gillham often remark that they’re members of a club they don’t want anyone else to join.
On the day before Thanksgiving in 2018, what they thought would be a routine doctor’s appointment for their firstborn son, Jackson, soon turned into the worst experience of their lives. Their 6-month-old baby had been showing signs of a cold, but when his breathing became labored, their pediatrician recommended he be transferred to the Pediatric ICU at St. Louis Children’s Hospital for more testing and treatments.
On his sixth day in the PICU, Jackson unexpectedly coded in Lara’s arms and was given rounds of CPR and placed on cardiac and respiratory life support. Eventually, Ben and Lara learned that their baby had a rare heart defect known as a pulmonary artery sling, which caused one of his arteries to wrap around his windpipe and block his airways. Although the couple tried to remain optimistic, after a few days, it became clear that Jackson’s brain would not recover from going without oxygen. On Dec. 3, 12 days after their visit to the pediatrician, Ben and Lara held Jackson close as he was removed from life support.
In the days and weeks following their son’s death, Ben and Lara tried to find something to help them in their grief, seeking out resources for parents who have lost children, as well as support groups and therapists. Although they received some resources from the hospital, they found them to be less than helpful, and in some cases even detrimental.
“The biggest thing for us when we left that hospital was we just simply did not have what we felt like were adequate resources or even a sense of direction,” Ben said. “Like, what do we do next? Who do we talk to next? We wanted to find people who have gone through this as well.”
“We knew that nobody would be able to bring Jackson back – we wouldn’t be able to fix that,” Lara added. “But we did want to figure out what we could do to help ourselves in moving forward and even getting a glimpse of what life might be like or what we might be able to do to continue.”
About a month and a half after Jackson passed away, Ben and Lara received a call from Dr. Ken Remy, one of the doctors who had treated Jackson in the PICU. Ken and his wife, Allison, a licensed clinical social worker, took the couple out for a drink to check in on them. They asked how they were doing and what they were finding helpful and not helpful. As the conversation unfolded, a seed was soon planted.
“After losing our one and only child to date, our thought process was like, literally nothing in life can get worse – why not dive into every experience we can, awkward as it may be in terms of support groups, going to conferences, checking things out,” Ben said. “Let’s just figure it out. Let’s see what’s good, what’s not good, if there’s a gap there and what can be improved. So that’s basically what we did in our first year after losing Jackson.”
Ben and Lara spent the next year brainstorming and researching, reflecting back on what helped them during their grieving process and what resources they wished had been available to them at the time. They sought input from their own friends and family, professionals such as the Remys and nurses at Children’s Hospital, and other parents who had experienced loss, including Martha and Nick McGeehon, who lost their daughter Everly to SIDS.
In February 2020, all that work came together when the Gillhams – along with the Remys and the McGeehons – officially launched Just Enduring. The 501c3 nonprofit organization is designed to support bereaved parents, as well as family, friends, grandparents, siblings and caregivers, through the grieving process. Just Enduring offers immediate resources after the loss of a child, as well as peer support.
The Gillhams acknowledge that there are many existing organizations to support those dealing with pregnancy and infant loss, but said they found there to be a gap when it came to parents dealing with the loss of a young child. To that end, Just Enduring focuses on the loss of children from a few weeks old all the way up to 30 to 40 years old. They also wanted to extend Just Enduring’s mission to provide support for the caregivers – such as doctors, nurses, therapists or funeral home directors – who are supporting families through the grieving process.
Ben likes to say that Just Enduring focuses on resources and relationships. They designed the organization’s website to include anything a grieving parent could possibly need, including book recommendations, step-by-step guides and general advice spanning everything from funeral home planning to lactation advice to sibling support.
“There was this age gap, but there was also a gap in finding all the resources in one place,” Lara said. “I was finding that I was hopping around trying to figure out different things. Whereas with our organization, the goal was having all these different resources together. We just kind of wanted to put it all in a place where parents didn’t feel overwhelmed trying to find it on their own.”
They also sought to make those resources easily accessible to anyone who could use them. Ben, who earned a BSBA with an emphasis in marketing and management and an MBA from the University of Missouri—St. Louis, put his professional background to use when building out Just Enduring’s online presence.
“We had family and friends tell us they went to Google and searched for what to do for a parent who’s lost a child and they couldn’t find anything,” Ben said. “That’s really been a source of motivation for us because that shouldn’t be the case. It should be easy to Google something and know how to support somebody. So just based on my background professionally, between putting a website together but also taking advantage of things like Google for Nonprofits, paid search and social, we’re trying to be more of that focal point to help get those resources in individuals’ hands.”
On the relationships side of things, Just Enduring fosters connections through its A Parent Like You program, which connects parents dealing with loss together based on similar circumstances, such as their child’s age or cause of death. So far, they’ve had over 100 people submit to be part of the program, which Ben said opened their eyes to how needed it was.
“We try to connect parents together because we have found that to be one of the most helpful things, just to find somebody with similarities that you can not only relate to in terms of what happened but you can also go through that grief journey together,” he said. “What is that first couple of months like versus when you’re a year down the road or even 5-10 years down the road? Those are really important different feelings as you progress along that grief journey.”
Although Just Enduring is currently a completely volunteer-based organization, the founders have big plans to expand their reach. They’re currently working on making more of an impact in local hospitals and funeral homes – a longtime goal stymied by the pandemic – and fundraising to hire a part-time or full-time executive director. Just Enduring is also seeking donations as well as volunteers to help with outreach, grant writing, blogging, events, website maintenance and more. It’s a lot of work, but for Ben and Lara, who are now also raising Jackson’s sister, Violet, it’s a way to keep Jackson’s memory alive.
“With how much blood, sweat and tears we’ve put into this, this is Jackson for us,” Ben said. “He’s not here, but it’s a way to honor him and put that work and effort into it. There have been so many times where we have had people reach out and tell us how impactful, how supportive and helpful this has been for them. We want parents to know that there’s life and love after losing a child. It is the worst experience of their life; it is a club I don’t want anyone to ever join, even though we know 50,000 children between the ages of 0 and 20 years old die each year in the United States. We know there’s enough that parents are going through it already, so if we can provide those resources and take just the slightest bit off of them, we’re happy to do that. And that’s what we want to be here for: to help people live and love after child loss.”