Bluefield Daily Telegraph, Bluefield, WV

Columns

October 25, 2013

Embracing the time you have

— — Cross-town doctor appointments, medical bills as long as an arm, get well cards piled up by the phone and tear-streaked faces. These are typical daily affairs a family faces when a parent is diagnosed with a terminal illness.

Disney’s Magic Kingdom, Universal Studios, and Sea World or Radio City Christmas Spectacular, Circle Line Three Hour Cruise and Times Square. Those aren’t usual items on that family’s agenda.

But when Kristen Grady Milligan was diagnosed with a rare terminal illness in 2003, she decided that leaving a legacy of happy memories in the midst of hospital visits was a critical part of her critical care. Although she passed away a year ago, she’s helped 158 families from 36 states create that legacy as well.

The first Inheritance of Hope Legacy Retreat was held in August 2008, an all-expenses paid trip for 16 families. The mission was to provide an opportunity for families to escape the daily rigors of medical care while creating new fun memories with a community of families dealing with the same issues. It quickly becomes a family reunion of sorts, says Deric Milligan, executive director of Inheritance of Hope, the non-profit he formed with his wife before her death.

“Being with others who understand what you’re dealing with is very powerful, no matter your age,” says Deric. As Kristen said in a videotaped message, “The world cares for me and looks out for me, but I think they often forget about the caregiver who’s really dealing with so much.”

“I think it helped my husband warm up to the idea that he did not always have to be the rock of my family, that it was OK to express and share his fears, confusion and pain,” said Mary Korinko about the retreat she took to NYC with her husband and two sons while struggling with Stage 3 breast cancer. “My eight-year-old was more comfortable talking about my cancer, and asking questions about the reality that someday I may get sick again.”

In addition to days filled with amusement park rides or big city sites, the families are provided the services of licensed counselors, who use play therapy to help young children or talk therapy to assist older children and adults. And sometimes the retreat provides a “normal” thing nearly forgotten in the midst of dealing daily with a sick loved one.

Over one million families in the U.S. are facing a parent’s terminal illness, which can be an isolating experience. “To have others who are suffering the same way, to come together to talk and hug and have fun, reminds me that it’s not all bad,” wrote Mark and Dawn Contreras of Pennsylvania on the IOH website. “To know that there are other people that feel the same way — it’s comforting.”

The goal of IOH is not simply a nice family trip and a photo album. The reason for its mission recognizes the possible outcome:

That’s what Adam Patwa from Charlotte, N.C. says he and his wife, Amy, learned during their trip before she passed away in January of this year. “The retreat affirmed something that my wife and I were intuitively sensing,” he told me, “that her illness and eventual death shouldn’t be taboo subjects for our little girl.

Even though her daddy gets frustrated more easily when he can’t figure out what to put in her lunch, or sad and depressed when he sits alone at her gymnastics week after week, and though he sometimes fears what the future may or may not bring, I want my daughter to know that her mother is worth talking about.”

Meredith McDaniel, MA, LPCA, met Kristen during the last year of her life and is now the lead counselor for retreats and follow-up care for families after they return home. “She was able to have peace,” McDaniel began “...because she trusted that God had, and still has, her husband and kids in his hands and loving care. She recognized that they were not hers to hold too tightly. This has been the biggest takeaway (for) me and I still wrestle with it daily when I look at my own kids.”

 “As horrible as a terminal diagnosis is for a young parent, there really is an opportunity to embrace the time you have left...” said Deric, Kristen’s husband, as he faces the anniversary of her death tomorrow. “It’s too easy to just plod through life with no real consideration for the legacy we’re leaving behind. A serious illness can refocus your priorities in a very positive way if you let it, and that’s one of the most important ways Inheritance of Hope can help parents. For Kristen and me, we became much more intentional about maximizing each and every day.”

Jaletta Albright Desmond is a columnist who writes about faith and family in North Carolina with her family. Contact her at jdesmond@bdtonline.com.

1
Text Only
Columns
Editorials
Poll

Are you registered to be an organ donor? After voting, go to facebook.com/bdtonline to comment.

Yes
No
I am considering it
     View Results