Elise Barrett has sound advice for caregivers who are walking the same path she has walked: “One of the things I had to learn over and over again is that human capacity is limited,” she recently shared. “These experiences take more out of you than you can replenish, and you can’t blame yourself. You are going to be compromised. You are not going to be able to always be patient, be loving, plan, or make meals. Whatever your thing is, you might not be able to do it. It is so important to normalize that uncomfortable truth, and to find ways of accepting it, and to discover ways of adapting. There will be many seasons, and letting each season be what it is can be what survival looks like.”
The Barrett family attended an Inheritance of Hope Legacy RetreatⓇ in Orlando in May 2015 while dad Chris was battling non-Hodgkin’s lymphoma. Elise describes IoH as a “waystation” where their grueling road was understood and all the needs of the family of five were attended. At the time, the couple’s children Emma Ruth, Margaret, and Erikson were nine, six, and four years old. Chris passed away less than a year later. According to Elise, “The IoH Legacy Retreat made a difference to the rest of the path we were walking.”
|The Barrett family at their Orlando Legacy RetreatⓇ in May 2015|
Other families that truly “get it,” and volunteers who provide a special level of attention make IoH Legacy RetreatsⓇ not only a welcome respite, but a game-changer in how families face the impending loss of a parent. Elise appreciates that her children made lifelong friends who are also living a non-traditional childhood, and says this was the gift of normalizing their unique situation.
Today, the three Barrett kids are all doing well. Emma Ruth is playing volleyball and riding horses, and Margaret is on the student council and basketball team. Erikson especially excels at math and loves all things Harry Potter. They have gone to Camp Kesem together (a nationwide summer camp experience for children affected by a parent’s cancer) and even met one of their IoH retreat friends there.
|The IoH bonds made at a Legacy Retreat are strong! Margaret (right) met up with her fellow IoH family member, Josie (left), at Camp Kesem.|
Beyond the friendships and support network, the Barretts benefitted from a new perspective on what a legacy can look like: “We discovered the idea that building a legacy is not an act of giving up. That was helpful for me as a caregiver, to see that being forward-looking and intentional was an act of love, and even an act of faithful defiance. And it prompted Chris to do things like write notes for each child on Valentine’s Day. IoH allowed us to talk about these things without fear or superstition.”
IoH families never expected to be in the places they are--the hospital, a chemo infusion room, a motorized wheelchair, bed, a funeral, or the dark places in one’s deepest fears. What Elise recognizes, though, is that there is another place: “IoH is a remarkable community of care. There are no rules in this space, and what Kristen and Deric did when they started IoH is to expand the imagination about how these journeys can look. I like to think of all of us together in a community of imagination, with more perspective, supporting each other and equipping people to walk forward.”
|Elise (right) with friend and fellow IoH family member, Sham Daniel (Orlando Legacy RetreatⓇ, May 2015)|
Angie Howell graduated from Davidson College, where she met Kristen Grady Milligan the first week of their freshman year. Kristen eventually started Inheritance of Hope with her husband Deric, and Angie heard about their work at a college reunion. In 2010, the two former hallmates got back in touch, and Angie became involved in IoH shortly afterwards. She has has served as a Legacy Retreat volunteer, Coordinator, and now, as Communications Manager, Angie helps tell the stories of IoH. She is constantly inspired by the people she meets in the IoH family. Read more Inheritance of Hope blogposts >>