I was watching ‘Miracles From Heaven’, a true story about a little girl fighting for her life against a rare disease. I don’t want to spoil it (YOU NEED TO SEE IT IF YOU HAVEN’T), but the family finds a specialist across the country that can possibly help her. This movie spoke to me in so many ways because some of this little girl’s story is so close to mine. I too have had to travel up and down the east coast for medical treatments and surgeries. In the movies, they don’t have time to explain what it is like for a young person going through this, so here is my story.
When it got to the point of having to find someone out of state to talk to, it was scary. I was only the second child in the state of Virginia to be diagnosed with Parathyroid disease. No one knew what to do, so we had no idea what the next step would be. My parents did a really good job hiding their feelings from me, because I had no idea the urgency there was to find someone. I remember when we drove up to Philadelphia the first time. We had a hotel to stay in the first night, but then nowhere after that. We didn’t even know if I would be able to have my surgery the next day. We were sent home because there wasn’t a open slot for me. I remember we were crossing the border into Delaware late at night heading home, and got a call to come back immediately. A spot had opened the next morning for surgery. There was only one problem….. where would we stay? We called the Ronald Mcdonald house in Philadelphia and they had a room open for my family and I. You definitely have fear of the unknown in this situation.
It can be fun.
When we travelled to Philadelphia for one of my post surgery appointments, we were able to travel the rest of the way to NYC. It was so much fun to forget about the reason I was there. This last year, we had gone to Tampa Florida multiple times for surgeries and appointments. While down there, we walked up and down the Tampa Riverwalk. We also went to the Florida Aquarium and to Clearwater to see Winter the Dolphin, star of the movie ‘Dolphin Tale’. When you are in the worst positions, it is so important to make the best out of them. You cannot let your illness consume you.
Airports are crazy after surgery.
Think about how crazy airports are, and then think about having a sore swollen neck and still on high doses of pain medication. Things can get pretty crazy. You don’t always have time to heal from your surgery before being put on a plane. We had layovers in Atlanta and only had ten minutes to get all the way to the other side of the airport. You constantly have to worry about germs and infection. The perk? You get to board the plane early!
For a lot of people, it only takes one surgery and then they are fixed. For me, it took five Parathyroid surgeries to fix me. Each time I had so much hope. Each time I was so disappointed. We traveled all that way just to need to come back and do it all over again. It was emotionally draining, and I began to not have as much hope. The only thing getting me through was knowing that God had a plan for me. He kept me around this long, so I knew he had a plan.
Although it is scary to travel for medical care at first, you begin to realize that you are getting the best care possible for your circumstance. If it wasn’t for traveling, I would not be living the healthy life I am today.