Last night, we returned from a quick four-day trip to Orlando, Florida. We didn't go to Disney, but just enjoyed the sunshine and pool.
Can I tell you the story of how that came to be? It really is a great story.
A few weeks ago, we reached out to Make-A-Wish, a wonderful organization that has only brought hope and joy into our lives. On a side note, I'm so glad they don't reach out to families, but wait for us to contact them. If they had contacted me, I would have been so angry. Hurt, to think about the possibility of my son qualifying for such a generous offer. To give in to the possibility that our son was terminally ill.
A trio of wonderful women came to our house and talked with Ben about what he would like most. He mentioned riding on an airplane. We went through the process of starting a trip to Disney World, a dream trip-of-a-lifetime! But it didn't take Andy and I long to realize that Ben realistically would not have the energy to enjoy a place like Disney. We called them and cancelled. Instead, Make-A-Wish threw him a huge bash where he got to enjoy high-impact, low-energy activities with go-carting, a magician, cotton candy and dinner for fifty of our closest family and friends. It was amazing. Go-carting has become such a favorite activity that he has requested it several times since!
We sort of gave up on the idea of going on a trip. But when Ben opened up an envelope of cash (with almost $200 in it) from one of the local dress-down days, he had talked of nothing but, "Mom, we can go to Myrtle Beach again. But we can fly in an airplane this time. Because I have more money than you even know!"
Amazing, how almost $200 in singles can make a four-year-old feel like he's the richest kid in the world.
Andy and I started talking about the likelihood of such a trip. JetBlue had graciously offered our family a roundtrip ticket to anywhere in the country a few weeks before. Perhaps they could give Ben the ride in the airplane he had hoped for?
Ben's doctor gave him clearance for the ride. But she suggested we go quickly, and return soon. So JetBlue worked fast - like within 48 hours - to secure a flight to Orlando and not only make our flight as comfortable as possible, but also paying for our rental car once we got there! It was a dream come-true. Ben even got to sit in the cockpit. It was just awesome.
Initially, we had looked into our favorite family vacation spot in Myrtle Beach. But when we learned that it was only supposed to be about 40*F, we decided to hunt for somewhere a bit warmer! JetBlue flew one-way to Orlando every day, so they made it sound easy for us to vacation there.
We told the kids the night before we left that we were leaving in the morning to ride on an airplane because Ben, indeed, had enough money to pay for it. I wish I would have videotaped his reaction. I couldn't have anticipated just how excited he would have been! "Let's go right now!" he insisted. "I'm too excited to sleep!" He woke up at 1am, asking if it was time to leave. He insisted on bringing his money bank with his vast collection of singles to pay for the trip, but we were grateful he agreed to leave it with my dad when he dropped us off at the airport. It was precious.
The media caught wind of our trip and we quickly denied any video cameras or interviews at the airport. But seeing that our plane was headed for Orlando, they immediately assumed that we were going to Disney World with the rest of the airplane, and on Make-A-Wish's dime. An understandable assumption. We were so pleased to then enjoy a quiet vacation, free from any cameras, because they had no idea we were simply going to a resort just outside of Disney in order to take advantage of the sun and the pool!
Our schedule was very simple. Movie in the morning, time in the pool, lunch, back home for naps, dinner and then home again for movie night before bed. We really didn't deviate too much from that. But it was all Ben could have handled anyway. It was awesome. A relaxing, enjoyable time with those I treasure most.
Andy and I almost dreaded coming home. Being away from home - away from anyone that recognized us - was sort of a break from reality. Coming home was acknowledging exactly where we are. And where we might be headed. But we were coming back with a handful of memories that wouldn't be forgotten any time soon. And with so many more smiles than when we started.
Ben is still very slow. He walks up stairs like an old man, one foot at a time and with his hand pushed against his knee to get enough energy to bring up the other foot to the same step. He lays down a lot. Takes at least one nap a day. And still sleeps through the night, waking up for a few moments just to take his steroid every five hours. Has only a few minutes a day where he has energy to do an activity of sorts. I spend a lot of my time on the couch with him and I love when he gets chatty, talking about anything under the sun. Mostly memories.
He eats a lot. Spaghetti, pizza, cinnamon raisin bagels and Ritz crackers, mostly. And he is chubby. Really chubby. His cheeks feel so tight, as if his skin can't stretch any more. His belly is perfectly round. His hunger and weight gain is because of the steroids. But the steroids are the only thing keeping him from feeling the pain of the swelling of the tumor. So, steroids, it is.
He gets really anxious. "Mom, how much longer before it's dark? How much longer before it's dinnertime? When is Papa going to come over? Are we going anywhere today? When is it going to be morning?" Anxious. Seemingly wishing the time away for the next thing. And he never likes to be in a room alone. Either Andy or I always need to be within his sights.
And he forgets words, or confuses them. He'll ask for a donut, but he really wants a bagel. He'll ask for pizza, but he means spaghetti. Just little things. But then he'll say, "I want a... what's that word again?" And he brags a lot about his poop. He even makes me text pictures of his excretions and send them to Nana and Papa. He knows that means his body is functioning, getting rid of the bad. And it's also keeping him free from stomach pain, one of the first things (in addition to the headaches) that landed us in the hospital in the first place.
I can't really say that he's improving. But he's not necessarily doing any worse. And I'm so grateful he's not in pain. That alone is a huge answer to prayer.
And for now, I'll take it.
Thank you, JetBlue, for a fantastic vacation. We will always be grateful for your generosity.
It was especially kind of you to allow Ben to keep his big bank of singles as well.