On Monday the 30th, my dad drove my older sister, three of our heart friends and myself up to California for a short trip to Disneyland. We met up with our other heart friends for dinner in Downtown Disney that same night. The restaurant thankfully had let me make a reservation a few days before our trip and we were able to put enough tables together to get 16 people all together to eat. It was an amazing weekend filled with a lot of laughter and amazing memories.
There are two topics I want to talk about that really stuck out to me during this trip, but since they're both rather long, I'm splitting it up into two posts. I will most certainly post tons of photos from the trip in my next post along with some great memories. But for this post I want to talk about an amazing family that I met when exiting the Indiana Jones ride.
Some of us got early entrance into the park and after everyone went on Space Mountain, we grabbed a quick bite for breakfast and headed over to Indiana Jones. Before all of this, I had spotted a young girl (either teenager or young adult like myself) with a medical mask on as well as a backpack that had tubing attached to it. At first glance I thought maybe it was cannulas for oxygen but I later found out that it was a type of permanent IV.
We all climbed into the ride once there, and I forgot about her for the time being. Its hard to focus on anything in particular when you're being thrown around in a vehicle and almost losing the bow you're wearing in your hair. It came back to me though when we all climbed out of the car at the exit and I turned around to make sure we had got everyone in our party when I saw her and her family climbing out of the car behind us. For a split second I wondered if I should ask if she's had a transplant. I know that I most certainly don't mind people asking me about my health, scar or why I'm in a wheelchair at times. But I also know that not everyone is as comfortable or open about their medical journeys and it can be a touchy situation that they prefer to keep private.
I made a quick decision though and decided to just go for it. What's the worst that could happen? I started off with, "Excuse me, I hope you don't mind me asking but did you have a transplant?" Turns out the teenage girl had had a bone marrow transplant not too long ago. After introducing myself, her mom asked me if I had had one, gesturing to the scar on my chest. I explained that I had four open-heart surgeries but will someday need a heart-lung transplant.
At this point one of my friends came over to us to see what was going on. I introduced my friend, explaining to the family that we all had CHD and met at a camp about 17 years ago. We get together as much as we can, knowing that when you have medical issues like us, it helps to have friends who "get it". The mom agreed and added that they had been waiting for 10 months in the hospital for the transplant, the people you meet in the hospital and in the medical community during your journey become like a second family to you. Nodding, I told her, "I know. I wanted to reach out because I know how hard this all can be. Had to let you know that there's people out there who get it and that you're not alone." Her eyes filled with tears and she thanked me for reaching out, telling me how much it meant to her and that she hoped I got what I needed for my health.
After leaving the ride, I regretted not telling her thank you as well. Within this past year and a half, most of my experiences with transplants have been so negative. I was denied by 4 transplant centers, during the evaluations I learned about all the terrifying complications that come with transplants, seen families and patients wait for months and months on end with false alarms concerning getting organs and then finally getting the organs but them failing within weeks and months - winding back up on the list in the hospital. But seeing this young girl going to Disneyland for the first time since being listed for transplant, it reminded me of the hope that can come with transplants. It was a bitter sweet reminder for me that transplant would have let me do so many amazing wonderful things that I've never gotten to do before, or have had to stop doing... but I was so grateful for the reminder of how wonderful and hopeful the process can be and I was beyond elated for this young woman who had gotten her second chance at life.
So to the young woman and her family I met in the exit at Indiana Jones ride in Disneyland, thank you for the wonderful and much needed reminder of how beautiful transplant can be and I want you to know that I am ecstatic for you and all that you'll finally get to do now with this gift of life.