My Nonprofit Reviews
Review for Inheritance of Hope , Pisgah Forest, NC, USA
I believe that two of the most important gifts a family who lives under the persistent, horrific reality of the physical or emotional decline and ultimate death of a mother or father are an opportunity in the present to live, for a short while, without the constant worry and stress of the illness and the opportunity to create a tangible legacy to fortify those who will mourn the passing in the future. Inheritance of Hope (IoH), founded by Deric Milligan and his late wife Kristen, have been offering these gifts via the Legacy Retreat, an all expenses paid, four day holiday, to families like mine since 2007. My family was served in August 2019 at a the 38th IoH Legacy Retreat which took place in Orlando, FL.
I discovered IoH while scrolling through my Facebook feed, interested in finding a fall marathon that might fit my schedule. Team IoH provides charity runners the opportunity to participate in some truly bucket list races, including Big Sur, Chicago, NYC and the Marine Corps Marathon. While researching IoH as a nonprofit, I thought the Legacy Retreat could be perfect for my family and sold the idea to my wife, who has become even more of an introvert than me since her illness. The application was very straightforward and required only two additional items, a letter from her doctor confirming diagnosis and brief letters from her to our children and me. Honestly, she probably put the minimal effort required into the letters, but within a couple weeks after uploading the application, I received a call from an IoH family coordinator, Heidi, to congratulate us for being selected. We were offered a choice of which upcoming Legacy Retreat to attend. After choosing Orlando, Heidi and I communicated via email, phone and text to cement travel and lodging arrangements. Heidi’s primary concern was to ensure that my family’s needs and special medical requirements would be met. We chose to travel with a collapsible wheelchair, but once in Orlando exclusively used the ones IoH provided for each family. It was all very convenient.
IoH is run by a staff of some of the most amazing, positive, supportive people I have ever come across: Betsy, Jill, Mikki, Audra, Eric, Gina, Aaron and others I will not offend by misspelling their names. Deric, cofounder and CEO, has assembled a truly great team. If Deric is the brain and the staff the heart of IoH, the Volunteers, an especially organized and selfless group of individuals personally assigned to each family, sometimes in pairs or more depending on the size of the family, are the body without which the Legacy Retreat could not happen. These individuals pay out of pocket to spend four days babysitting snot nosed brats, pushing wheelchairs through amusement parks, playing personal assistant to sometimes crabby patients, listening to caregivers venting and many other generally considered unpleasant tasks. Like a lodestone, IoH attracts volunteers as special as their staff.
The retreat was scheduled from Friday through Monday, though we decided to add an extra day before and after. The extra day prior allowed us to arrive in Orlando and prepare for our first experience participating in a “cancer thing with a bunch of sick folk”. We were somewhat anxious and admittedly ignorant. Postponing your departure at least one day following the retreat is highly recommended if you can afford the time to take full advantage of Monday. More on that later...
So we arrived on Thursday, and though the start of the Retreat was the next day, Heidi came and met my family at dinner to say hello and verify there were no issues with travel or getting set up at the hotel. We stayed at the Renaissance Orlando at Seaworld during the entire trip. Choosing to stay two nights additional to the Retreat, did require us to assume the cost of those two nights, however, Heidi was able to get us their rate for those nights. IoH’s rate includes a pretty phenomenal buffet breakfast which usually costs around $34 per person. This is not your typical complimentary hotel breakfast. Definitely try the omelet made by retired Navy Chief Mess Specialist and make your own freshly squeezed carrot, celery, tomato or orange juice medley.
Friday is when most families arrive, and that was when our volunteers met us. Over these four days, Brian, father of three, and Marina, a child counselor, became family, but without the drama. My kids still miss them. My daughter submitted a photo of our family with them for her fourth grade classroom bulletin board. Brian and I text back and forth and there is still an outstanding challenge to run a race for IoH together next year.
Friday culminates in a dinner at the hotel for everyone serving or being served that includes plenty of fun. If you decide to retire early and your children still have energy to burn, your volunteers will gladly stay and deliver them to your room at a time of your choosing.
Saturday morning began with breakfast before attending your Legacy group. Adults are separated from children and children divided into age groups for roughly two hours. The counselors leading the children’s groups are very careful not to share anything parents may not wish them to regarding terminal illness, but rather focus on compartmentalizations and introducing methods to deal with stress and emotions. We were skeptical about the adult group at first, but it turns out most couples were, so before long we were all telling our stories as patients or caregivers, sharing as much or as little as we chose. There was never any pressure to speak. Thanks Jill.
At 11:00, we came together with our children and volunteers and made our way across the street to Seaworld. The time was ours until 4:00 when there was a photo planned for all participants outside Shamu stadium. Mikki, photographer extraordinaire, did a fantastic job getting us all together and getting a great shot.
After the photo, the volunteers stayed in the park with the children while the parents prepared for a dinner date night. We ate at the Bonefish Grill, where a special menu was provided. A long table was set up for the couples and we ended up sitting across from a wonderful couple from Colorado. Our prayers are with you Justin and Katie.
After dinner, time was set aside specifically to create each family’s Legacy Video. This event is the capstone of the retreat. There is no specific format or required content. It can be done by both parents or just the patient. One of the staff can act as a facilitator or you can have the room to yourself. The staff can provide ideas if you are unsure what types of things you may want to say. I would bet you could even exceed the 30 minute time limit if you needed. This is a very personal thing, and highly respected by the staff. In fact, IoH is is so all in on the value of this opportunity that they will keep a room set up for you if you are unable to make a video on Saturday. Thanks, Betsy.
Sunday morning was very similar to the day before, but this time the adult group sessions were split such that caregivers and patients were separate. This was one of the most profound parts of the retreat for me, to hear how other caregivers were or were not coping and share some of the things I’ve learned and learn from others.
After group sessions, we boarded a coach to Universal. Unfortunately, my wife was not feeling well and rested in the room for the day. She was not forgotten, however, and the IoH staff ensured that she had everything she needed, including lunch and a ride to join up with us at Universal if she started feeling better. Yes, I went with Brian, Marina and my children and tried to wash away the guilt with copious amounts of frozen butter beer and roller coasters. Two important things about Universal: your ticket is a two day ticket for both Universal and Islands of Adventure, so stay the extra day if you can, and IoH has made an arrangement with the park that will forever change your perspective in a great way.
What began a nightly routine on Friday in the vast hotel pool, rounds and rounds of Sharks & Minnows, with a small number of players, encompassed more than half the pool and close to 50 adults and children by Sunday night. I think we finally played our last round at around 10:30 that night. Jennie, Seaweed, you both did swimmingly.
After breakfast Monday, you will all go to the closing ceremony. After a short time, the children will leave the room. There will be tears. It was not a bad thing.
Once the closing ceremony is complete and you are reunited with your children, the Retreat is over and it is time to say goodbye. More tears. Again, not a bad thing. If you are leaving that day, your travel arrangements will have already been made. If you are staying, IoH provided a bus to Universal to spend another day enjoying the park. They also ensure the bus will be available for a return trip to the hotel at around 5:30. Stay the extra day, the arrangement with the park will still be in effect and it’s so worth it. My wife was able to make it to Universal on Monday.
Listen, I honestly thought that I was going to just carry on watching my wife die, getting my kids to counseling and sucking it all up everyday without ever taking advantage of any the “cancer perks” out there. It was too much effort while taking care of my family. Plus, I’m smart, I know what I need to do. I’m not really into talking with anyone. Remember when I mentioned I was ignorant?
If you are a parent who is a patient suffering with a terminal illness or a caregiver, go to https://inheritanceofhope.org/retreats.html and apply for a retreat.
The vision of Deric and Kristen, made reality by the phenomenal staff and volunteers at Inheritance of Hope, to allow my family a much needed timeout from cancer and the opportunity to create a Legacy Video, the true value of which is beyond words. Thank you Inheritance of Hope for everything.