Orlando Memories — Dr. Nace Lanier

When Josiah was diagnosed with terminal brain cancer, many felt deep emotions from the start of the journey. I imagine many wondered if they could really step in and help us. Can someone from “outside” the family and medical care team make a real difference during this traumatic time?

You can.

One particular friend quickly reached out to me when he heard about Josiah’s diagnosis. He is a very successful man with a ready smile and a large presence. He is not quick to speak and most would think him to be stoic. So most people would be surprised by the deep compassion and empathy in his heart.

He had tears in his eyes when he told me, “Go anywhere. Go have fun with your children. Don’t let money be an issue.” I will never forget the look in his eyes and hearing the tremble in his voice.

He was right. He was so right. I needed to make as many wonderful memories with my three as I could.

He and his wife did some research and connected us with the Make a Wish foundation. They would make a contribution knowing this nonprofit would take care of us. This was not just a family vacation. We would have special needs and considerations. They placed us in good hands.

The following was from the medical blog:

June 4, 2015

Josiah's Wish

I've been mulling over how to describe Josiah's wish for the "Make a Wish" foundation. I've thought about explaining how content he really is. He didn't want anything. Recently, he has been telling us, "I'm spoiled".
I've thought about explaining the mad rush to get the children passports. Making contacts and scouring the internet to figure out how to get them ASAP. Then to end up driving an extra mile before and after radiation because the one post office that doesn't work on appointments (others post offices said the earliest we could be seen was July 10) was right next to the hospital. I really liked the idea of telling you how God softened the heart of the supervisor to get us in on that very afternoon which meant Ella didn't have to miss another day of school.
I've also thought about telling you how funny it was that Josiah considered Hawaii and Texas as both foreign countries. But I've seen pictures of Hawaii and still don't believe it's real. And I've talked to enough Texans (and Josiah has too) that I easily understand how he would believe Texas would be considered outside the US.
But what I want to focus on is not how wonderful the people of Make a Wish have been and the two hilarious sisters that are volunteering their time to work with us, but what Josiah said after they left. I asked him to explain his choices: Texas, Hawaii, China and Atlantis. But he wasn't really interested in giving me a blow by blow of his dreams.
He just looked at me with those big brown eyes peering through his steroid swollen cheeks and said, "They really can't give me what I wish for."
"Really", I answered.
"Yeah, I would like for there not to be any more poor people. And I want to get into heaven. That's what I really wish for."
Fighting back tears of mixed emotions of pride and fear, I agreed. "Only Jesus can give us those."
He simply nodded and said "Yep". Turned and went into the other room. I bowed my head. Praised God and cried a few more tears.
I love my boy.

I still love my boy. He had such a connection to life beyond himself. After we returned from the beach (Squinting), I announced where we were going:

June 26, 2015

Some good news to share: we are officially going to Atlantis! We received the children's passports and forwarded Make A Wish the information. They called and told us we are in process for the journey... I really don't have any details besides the location. I will be sure to update everyone as it gets closer. It is so good for us to be looking forward to a fantastical trip.

But a few months later, plans had to change.

October 4, 2015

Lastly, we had a follow up appointment on Thursday. In the wake of the weekend struggles, the doctors at Children’s National wanted to observe him. The appointment went well and the doctors were encouraged that the increased steroids helped. But they also encouraged Josiah to consider going on the Make a Wish trip sooner than later. Dr. Hwang did a wonderful job skirting the “fear” of why Josiah should go sooner than later. He wanted Josiah to “make sure he got a wish”. So I told Josiah to think about some other place to go or something else to do. We’d talk about it when he got back from Pittsburgh. I assured him that we would go to Atlantis later when he could go and really enjoy the extreme water park. But it would be great to go on a trip sooner.

Josiah wanted to go to Disney world in Orlando. The blog update above said a lot without many words. The doctors were afraid that he would continue to get worse at such a rate that he either would not make it to the Bahamas or he would not be able to enjoy it if we did go. Between the headaches, lack of energy and mobility they felt Disney was the better bet. Make a Wish sends many children there and has a lot of experience with the special needs that Josiah had.

Even though it was not the first place he wanted to go, he was excited to be going to “the happiest place on earth”. I am very grateful for the Make a Wish organization and the excellent volunteers that served us. Making memories and having as much fun as possible is an excellent way to fight cancer.

My friend leading us to Make a Wish instead of “just” funding our trip was gigantic. Instead of changing flights, canceling reservations, and creating a whole new vacation, it was just like we pushed a button and it was done. They were equipped to pivot easily where we would have had to climb a new mountain in his journey.

I am grateful to my unsung heroes who made a difference in our lives. This couple wept, spoke, shared, prayed and continued to support us through the years. Please know that you can make a difference. You probably cannot take away the biggest hurts. You cannot make the source of the evil go away. But shining your light in the darkness makes a way that makes a real difference.