A Weekend of Hope

 2 Corinthians 1:3-5 "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too."

On March 4-7th our family was blessed to be gifted a trip with Inheritance of Hope (IOH) to Florida. IOH is like Make A Wish for parents with terminal illnesses that have children under the age of 18. Every step of the process was carefully thought out and implemented. You can tell that everyone in leadership and every volunteer put their entire heart and all their love into this weekend. Each one of us will forever remember our weekend with IOH and we have added people to our family.

Friday morning started out very early (3:30am). The first thing we had to do was take a COVID test so that we could travel on our trip. We quickly loaded the van and headed for the Lexington Airport. Once we arrived at the airport, I realized that I had forgotten to take a picture of our COVID tests. Thankfully, my parents were able to swing by my house and snap a picture and text it to me (thank you parents and technology). We flew from Lexington to Atlanta, where we had a three hour layover. We then boarded our plane and headed for Florida. When we left the terminal, we were greeted by our IOH team. They quickly introduced themselves and grabbed all of our bags because they wanted to make this weekend as easy on us as possible. 

The kids instantly bonded to Meghan and Brian, the two volunteers that were assigned to our family for the weekend. As we waited for our bus, we talked and played TACO CAT GOAT CHEESE PIZZA. Time flew and before we knew it, we were headed for our hotel, The Renaissance at Sea World. When we arrived, the team had our rooms lined up and had a gift bag that contained all of our shirts for the weekend, as well as masks, hand sanitizer, and many other little thoughtful gifts for the weekend. 

Brian and his wife Heidi

Meghan

Sophia was excited to see Jensi again

We changed into clothes for our family photos and waited for Abigail's plane from Lynchburg to arrive with her. Once she arrived, we quickly headed to the garden for pictures. We just finished before the cutoff time. 

After the pictures were done, we headed upstairs to change into our shirts for the evening program. Our volunteers led us to a reception area outside, which was so beautiful. When we arrived, Mickey and Minnie were there to greet us. After eating delicious meal and warm welcome by the IOH team and Kendra Scott, they opened the dance floor. Not only was there dancing, there were games set up and also Kendra Scott set up a color bar where we were able to go pick out a piece of jewelry! I was so fortunate that when my turn arrived, Kendra Scott actually made my jewelry for me. She is so sweet and generous. Her team and business helped support IOH and this weekend retreat!

Caroline (left) - a volunteer from Dillards who hung out with us Friday night and all day Saturday. She's a new member of our extended family!

Color Bar - Kendra Scott jewelry customized to our choices

Sarah and Zorte, two of Kendra Scott's employees that hung out with us Friday night and all day Saturday. They are now members of our extended family!

Jill and Sarah (they both hung out with us Friday night and Saturday)

Monogramed bags filled with goodies for Disney the next day (sunscreen, spray fans, bandaids, hand sanitizer, etc). So thoughtful!

Kendra Scott making my necklace and earrings!

That evening as we were partying, Meghan took Micaela and Joella to the pool to swim. They had a blast!

The kids enjoyed playing many games with their friends. This is an intense game that is really fun...especially for competitive people.

Wayne and I fell asleep right at 10:00 since we were exhausted from such a long day of travel and we knew we had a long day up ahead at Disney. The next morning, we started our day off with an amazing breakfast at the hotel. The kids enjoying chasing anything they wanted for breakfast!

After breakfast, we all broke out into our separate groups for group time. Micaela and Joella were each in their own class. Micaela did great all alone and made friends quickly. Grace, Naomi, Shan Chen, and Sophia were all in the teenage group. Abigail met with the young adults. Wayne and I met with a group of parents including people diagnosed with breast cancer, brain cancer, and ALS. These group times helped the kids work through some trauma of having a parent with cancer. I have to admit in our group, it was hard at times not to start crying while people talked about what was going on in their lives.

After our group meetings, we all met up to catch a bus to Disney. IOH was so prepared and had lunches from Jason's Deli to eat on the bus. Our volunteers had backpacks filled with water, sunscreen, and anything else we may need at the park. As a mom, it was hard to rely on someone else, but it was also so relaxing to not have to worry about all the little details. IOH took care of everything so that we could just enjoy ourselves and make memories!

To make toting things around easier, each family had a wheelchair. Our kids loved taking turns sitting in the wheelchair to give their feet a break.

Big man in a tiny car. He had to drive from the passenger side since he didn't fit under the steering wheel! Tall people problems!

After a wonderful day at Disney, we headed back to the hotel for some much needed sleep. We got up the next morning and had group time again and then we headed off to Universal Studios. 

Once again, IOH was so proactive in maximizing our times at the park. Not only did we have lunch on the bus, they were able to get us special passes at each park so that we were able to bypass the lines. This enabled us to ride lots of rides (15 at Disney and 7 for me and Wayne at Universal, many more for the kids). The adults only stayed at Universal from 12-4:30. They then sent us back to the hotel for a parent's night out while the kids stayed at the park until closing with the volunteers.

Kid's night out...look at all of those kids!

When Wayne and I got back to the hotel, they separated the men and women and had surprises for us. We were told to pick out an outfit that Dillard's had provided and select a set of Kendra Scott jewelry. They then had makeup artists to do our makeup for our date night. It was so fun to be pampered!

We then had some pictures taken before we were whisked away to a special dinner. It was such an amazing time to be alone with Wayne and know that the kids were making memories with their friends.

On our last day in Florida, we all gathered in a large room to discuss the weekend. There was also a panel of people who had lost loved ones and shared what IOH had meant to them as a family. The biggest surprise was that our amazing volunteers, after getting back to the hotel around 11pm with all the kids, stayed up and made us a scrapbook of pictures from our trip. The love we received from our volunteers and all of the staff at IOH was unbelievable! 

None of us will ever forget our weekend with IOH! In fact, we now have many new additions to our extended family. I'm sure it is hard to comprehend thinking of "strangers" as family, but the unity that you feel in Christ, with those who believe, and also the shared suffering joins you together in ways other friendships cannot. If you are ever looking for an organization to support, I highly recommend Inheritance of Hope. The work they are doing is truly life changing!

https://inheritanceofhope.org

7 Year Miracle

Psalm 145:5-7 "I will meditate on the glorious splendor of Your majesty, and on Your wondrous works. Men shall speak of the might of Your awesome acts, and I will declare Your greatness. They shall utter the memory of Your great goodness, and shall sing of Your righteousness." 

It is hard to believe that we have reached the seven year anniversary of Wayne's grand Mal seizure, which revealed a lemon size cancerous tumor in his head. The picture below shows the missing piece of his brain they had to remove because of the tumor.

This day is always filled with so many emotions. Our children's lives were forever changed that day. We were talking about some big feelings with our youngest two kids and we realized that their entire childhood, that they can remember, has been with the reality of Wayne's cancer. But even with all the hard that we have gone through, the thing that blesses our hearts the most is to see that this trial has not driven our children away from the Lord, but closer to the Lord. It's very true that in the hardest storms, you learn to trust your true anchor, Jesus. He is the only one that has sustained us through the good, the bad, and everything in between. 

I am not the same person I was seven years ago...but that is a good thing. You can see on this blog post how we reflected on God's goodness. I have learned to trust our big God with the hard and difficult things of life. I know that God is the one who holds our timeline in His hands. If it is my time to go, then I'll die. If it isn't my time to go, then God will keep me going. We see that clearly in Wayne's life. God isn't done with Him and He has a plan that is bigger then the doctor's life expectancy chart. He's so far out now that he is an outlier on the bell curve!  

I've also discovered that stepping out in obedience to whatever God is calling you to do is such a blessing. It can be scary to take the first step off the cliff, but the amazing journey you get to take with God when you radically obey Him is unlike anything else. The key is trusting God with everything. Believe me, I have not arrived at that at all, but I am so much better at trusting now then I was seven years ago. Each trial gives me the opportunity to put my faith and trust into action. 

I think the biggest struggle on this anniversary is trying to understand why Wayne and not others? We have lost so many godly men and women to this awful cancer and it just breaks our hearts. It's in these moments that we have to step back and just trust God's plan. We may not understand it this side of heaven, but God knows what He is doing. 

As we celebrate this seven year anniversary, we are super excited that during the first week of March, our family is going to be blessed by Inheritance of Hope with a retreat in Florida. We were supposed to go March of 2020, but COVID came along and disrupted everyone's lives. I first heard about Inheritance of Hope (IOH) from my friend Amy, who lost her husband to brain cancer. Their family attended a retreat with IOH and she said it was the most amazing thing. In March of 2020, we attended the first virtual retreat that IOH has ever hosted, since our in-person retreat was canceled. Everything IOH does has such purpose and meaning! We were blessed by the family activities they had us do that helped us work through some of the emotions of having a parent with a terminal illness. 

Not only did they help the kids start to process some big feelings, but they taught us to make the most of every day with our family....to make memories. That is a gift that every family should learn, regardless of your health. 

The friendships and relationships that have been developed through IOH are unbelievable. The kids are part of teen groups that meet together for game nights. I attend, when I remember, a support group for people with GBM and their spouses. It is comforting to be able to talk with others who totally get the fears, worries, and all the hard that comes with this diagnosis. 

We cannot wait to meet the IOH team in person and give them huge hugs! Abigail was so blessed by IOH that she has now served on three IOH e-retreats. She called me the other day very excited because she was selected to serve at an upcoming in person retreat later this year. She is using her hard trial with her dad to bless other families experiencing the same kind of trial. 2 Corinthians 1:3-4 says, "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."

In the next few days, Lord willing, I will post again with updates. I have not been very good at blogging. These kids keep us super busy. Thank you for all the years that so many of you have been praying for us. You do not know how deeply we appreciate each and every one of you and your prayers. Keep them coming!