Bringing hope to everyday lives!
In these days of uncertainty and limited social interaction, you might find yourself frustrated by the way your life has changed over the past few weeks (or even days). Those of us with ALS or other debilitating diseases get it. But if we can adapt, you can too!
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| The Douglas family made lifelong memories on their Inheritance of Hope Legacy Retreat® in May 2017 |
While the rest of the world learns to social distance, it’s business as usual for many of our Inheritance of Hope families. There’s nothing quite like a terminal diagnosis or deadly virus to quickly scrap plans and teach necessary health saving measures. For our IoH families, uncertainty is the only certainty, and they understand the disappointment, anxiety, and adaptations that have become routine over these last few weeks. Because we are all in this together, these unwilling experts offer their tips for coping with fear, near-constant change, and the need to quarantine.
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On March 18th, Inheritance of Hope (IoH) recognizes the birthday of our Co-Founder Kristen Grady Milligan. Kristen may have been the best legacy-builder ever--while living with cancer, she prepared cedar chests full of notes, gifts, and videos for each of her three children. Although young when their mom passed away, Kristen’s son and two daughters continue to feel her presence through the tangible ways she left a part of herself with them.
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| Kristen Grady Milligan, March 18, 1973 - October 26, 2012 |
While the rest of the world ho-ho-hos their way through the holiday season, those with chronic illnesses might be quietly struggling to keep everything together. Add to that the stress of decorating, attending parties and shopping for gifts and you’ve got a recipe for a holiday-themed disaster.
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Ashlea Milligan’s parents Kristen and Deric founded Inheritance of Hope together after Kristen was diagnosed with terminal liver cancer. Ashlea has perspective that resonates with the broader IoH family, and through her writing, hopes to shed light on issues surrounding terminal illness and those who are left behind in its wake. She wrote her first installment in this series earlier, and continues to share her thoughts.
Coming to college and discussing childhood with my friends has been a fascinating exploration. My roommates and I come from different backgrounds. While we all grew up under similar circumstances, all American, UNC Chapel Hill-bound children, there are variances that I find striking. Listening to them recount their childhoods is always slightly surprising, and brings out the nuances of my childhood that were contrary to those of my friends. I have begun to recognize how different growing up with a sick parent actually makes your life - the before, after, and during.
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| Ashlea and her mom, Kristen |
I didn’t know Holley Kitchen but I visualize her face when I hear her name. She has cute blonde hair and expressive eyes. When I first searched online for metastatic breast cancer in 2016, her powerful video was one of the first advocacy pieces that I saw. I cried at the computer when I watched and then I called my husband to sit beside me so we could watch it together. I handed him a Kleenex. Like Holley, I was a young mother that will be fighting cancer until my journey on earth is over.
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| Holley Kitchen used her voice for good |
There’s something irreplaceable about intentionality, no matter how small the gesture. I, for one, would prefer a thoughtful, handwritten note over a lavish gift of my own choosing. However, it can be very difficult to find the time and energy to go out of your way emotionally. But, because I believe in the value of intentionality, I’ve found a few fun things to do that make it feel like less of an endeavor and more of a creative activity. The list is quite standard, but I have added a personal twist to make it a little more fun. As a huge bonus, the recipient of your gift will recognize the extra effort put into their gift, and feel all the more loved as a result!
Of her family’s Inheritance of Hope Legacy RetreatⓇ, Amanda Coleman comments, “It’s pretty amazing what three days came to!” Amanda, her late husband Mike, and their daughter Leah joined IoH in May 2013 for an Orlando Legacy RetreatⓇ, while Mike was battling glioblastoma multiforme brain cancer.
Mike had vacationed at Disney World as a child himself, which Amanda describes as “his favorite place on earth.” Some of the family’s best memories from their trip were Leah meeting Princess Merida and Mike insisting on carrying his small daughter through the park when she began to tire out. Amanda remembers, “He said he didn’t know how long he would be able to do that, and he wanted Leah to remember that it was her Daddy who carried her.”
Amanda, Leah and Mike on their Legacy RetreatⓇ
1. “Don’t assume just because someone looks fine on the outside that they are OK.” Variations of this comment came up in multiple interviews with our IoH families affected by brain cancer. Wives described husbands who sleep afternoons in order to save up energy for cheering at a child’s big game that night, or the frustration of large gatherings where others may not understand that noise and questions can be too exhausting.
2. Anxiety can accompany any activity, and sometimes only a close caregiver is able to recognize signs of an impending seizure or other complication.
