Friends. Let me introduce you to Inheritance of Hope.
Once upon a time, there was a couple, and their names were Kristen and Deric. By all accounts, they were precious. I’ll bet they never cussed, and I’ll bet they always kissed each other goodnight. (I can’t be sure about that part, but it’s my impression after reading Kristen’s books. 🙂 ) Musicians, Christians, devoted parents to three beautiful children.
Then when Kristen was 30, she was diagnosed with stage IV liver cancer.
It’s a dramatic and deeply sad story, full of promising treatments and devastating metastases, a roller coaster veering wildly between life and death. Kristen and Deric were forced to transition from what looked like the fairy tale family story into the strange parallel universe of terminal illness, a journey lived one tentative moment at a time, in and out of hospitals and treatment plans, the universe colored with the knowledge that, despite everyone’s best efforts, your death is coming before you are full of years.
Deric and Kristen had ten years together after her diagnosis, and during that time, Kristen began thinking intentionally about the legacy she wanted to leave their children. They looked for resources to support them, to help them deal with Kristen’s illness as a family, and they did not find the resources they needed.
So they began to build a bigger legacy.
Together, they founded Inheritance of Hope. Together, they began to curate resources; together they began to work with friends and partners. Together, they began hosting what they called Legacy Retreats, experiences set aside where young families with a terminally ill parent could be connected with resources, with one another, with counselors and friends, and ultimately, with the God who loves them and who can be trusted – even in the valley of the shadow of death. The God who can be trusted even with the lives of children who have lost an earthly parent.
Kristen died in 2012, and those who love her still feel her absence – but her sweet, trusting, hopeful spirit is palpable still. She crafted an intentional legacy for her children in ways we can hear about – a hope chest full of lovingly chosen gifts for milestones, videos and letters – and also in ways we may never see. And she and Deric have created a legacy for so many families like ours, families who are trying to live into coming death with hope.
Chris and I, along with Emma Ruth, Margaret, and Erikson, were inheritors of this legacy this past weekend. We got a call Tuesday, letting us know that the waiting list had opened up and we could go to Orlando that Saturday. What better time, we reasoned, eight weeks after a cross-country move and less than 90 days into my new job? HAHAHA!! But my bosses said, Go! And Chris said, heck, we can just put some stuff from the boxes we haven’t unpacked into a couple of suitcases. And the next thing we knew, we were on a plane to Orlando.
First, you need to know that there were perhaps 150 volunteers and staffers taking care of 24 families. From the moment we arrived at the airport in Florida, we took care of very little else ourselves. We were met at the baggage claim with smiles and signs, and whisked away to the Doubletree Disney before we knew what had hit us. We got into our suite, and there to greet us were bags and bags of goodies – hair ties, cookies, snacks, books, sunscreen, tshirts – along with some other beautiful surprises that I can’t mention publicly so as not to spoil the fun for future families. And every minute of every day was cushioned by hours of forethought and preparation. Those of you who’ve planned events know what this required. They had thought of EVERYTHING. Anything that could make logistics or life easier on the families attending the retreat had been done. And it was all done with a spirit of deep care and love and hospitality.
In the mornings, we had age-level group times, facilitated by therapists. The little people did developmentally appropriate play-work and journaling, and were introduced to tools to manage worry and fear. In those groups, the experience of having a very sick parent was normalized, and they were able to talk and draw about what that was like for them. We grown-up folks had small groups as well, and the relief of knowing that the people in that room with us really, deeply understood our weird, constantly variably stressful life was huge. Huge. A lot of honesty. A lot of tears, a lot of dark humor. A lot of grace in those rooms.
And then in the afternoons – Disney! Universal Studios! Sea World! People, I am going to be honest here – I have been dreading the moment we would have to take the kids to Disney. So much hot. So much crowd. So much stuff. But we were assigned two volunteers to shepherd and care for us and the kids. You know what? Disney can be magical. As we were walking into the park, our volunteers pushing the wheelchair and schlepping a hundred pound backpack full of water and snacks and keeping track of our cards, I saw Chris talking with Emma Ruth, and I had a teeny little crossbody backpack with basically chapstick and my wallet and phone in it, and I was holding hands with Margaret on one side and Erikson on the other, and I felt myself smile spontaneously – not purposefully, not an “aren’t-we-having-fun-because-I’m-the-mama-and-I-have-to-keep-this-boat-afloat” smile, but a real smile. A, “Hey, I see the Cinderella castle!” smile. An, “Oh, but my children are precious,” smile. A, “This might actually be fun,” smile.
They took pictures of us. All weekend. All the time. Not intrusively, but we knew it was handled. We didn’t have to constantly think, “Oh no! We have to save All The Memories!” and be fumbling with our phones the whole time. We just Disneyed. We Universaled. We shot aliens with Buzz Lightyear and bump-bump-bumped through the Hundred Acre Wood with Tigger and turned into Minions and got soaking wet with Curious George and said yes to souvenirs, and these amazing, amazing volunteers and staff recorded it for us.
They loved our children. When they were sweet and adorable, and also when they were tired little travelers. They loved them.
They gave Chris and me a night out at a lovely restaurant.
And they helped us make a Legacy Video – a video where Chris is able to tell stories and offer wisdom for the children.
One of the things I loved most was the gentle way the staff helped narrate these things for us. Many families have an almost superstitious fear of preparing for death – it can feel like “giving up,” like “not fighting hard enough.” And sometimes, well-meaning people who want to be encouraging cut off conversations about death, really believing it’s helpful and supportive to keep saying, “God does miracles!” and quoting Winston Churchill’s “never never never give up” speech even in the teeth of hospice care. But Kristen modeled another way beautifully. She prepared early – and said, you know, if I’m still here for these milestones, it’s going to be so much fun! This actually happened – she got to present the gift she’d purchased years ago for her daughter’s 13th birthday. And it was delightful. Then, when she was gone by the time of her son’s 13th birthday, he had a gift to open from his mother as well. Preparing isn’t giving up. Building an intentional legacy – also not giving up. Facing the probability of an earlier-than-hoped-for death with courage and love, and not with denial – not giving up.
This is a sacred space, and Inheritance of Hope is one of the few organizations that walks into it intentionally with young families. We made friendships that will sustain us in the coming months and years; we learned more about how our children are dealing with this journey. We have a community that gets it in a particular way, and we know where to go if we need resources to help us love and support our children well. And we were reminded together of the truth that makes walking this path with love – and even, perhaps, with moments of peace – all possible, the truth that nothing, not life, not suffering, not death itself, has the power to separate us from God’s tender, persistent, fierce love.
I want to introduce you to our new friends – you can see them on the slideshow below. Maybe, too, you want to consider supporting Inheritance of Hope. Check out their website and read their story in their own words. Catastrophic illness can and does destroy families, destroy people. I saw people on the verge get a second wind this past weekend. I saw families receive the manna they needed for the next leg of their wilderness walk. This work is holy work being done by people with big, tender hearts. And we are so grateful to have been rested and loved and inspired on this Legacy Retreat.