Mardi Gras break 2021 was different for New Orleans...even though Mardi Gras parades were cancelled the celebration moved forward. Most years we skip the parades and take time to do a family trip or bring Wyatt to doctor appointments so he would not have to miss any school. This year we split up: Patrick took Wyatt to his annual image DMD visit in FL and I took Wynston on a mother/son trip to Disney World with friends who are definitely family. I could tell Wynston wasn’t really sure what he thought about going to Disney without Patrick and Wyatt but I think he was excited and now I know he did enjoy our time together.
I woke up Mardi Gras morning and it was FREEZING; literally it was 24 degrees in New Orleans. I wondered if this trip would move forward; would we be able to fly out to warmer weather in Orlando. Luckily we were, we headed to the airport with my bestie and her grand-daughter. The kids, really all of us, were pumped: dressed in Mardi Gras shirts with huge smiles on our faces.
As soon as we landed in Orlando we headed to the hotel and the day continued on non-stop. We picked up some more friends and headed to Disney Springs. We didn’t stop, constant motion is what I kept thinking! We explored the area, took pictures, bought gifts, ate delicious food and then headed back to the hotel to get ready for the rest of the trip. As I laid awake in bed with Wynston that first night I thought of the title of this blog. My little boy NEVER stopped moving, he literally was in constant motion. He was tossing and turning, sleep-talking and grinding his teeth. It was like he couldn’t relax because he was so excited for the next few days and I couldn’t wait to be by his side for all of the fun.
The next 3 days in the park were so much fun and exhausting at the same time. Wynston was always moving forward even if the rest of us were 25 steps behind. He could not wait to see what was ahead, what fun thing he could do next. Many times the other adults and I just wanted Wynston to slow down, and live in the moment. At times it seemed that instead of him enjoying where he was he was ready to finish it to see what else lied ahead. On the last day I realized that he just didn’t want to miss anything. He hadn’t been to Disney in a long time and he wanted to experience it all and to do that he had to keep moving forward. I told him that even if he was faster than me I would be by his side (except for on Tower of Terror, I would not be by his side on that ride LOL). I feel so blessed that we were able to spend this time together because raising a child with special needs is not only hard for the parents but especially hard for a sibling of the special needs child. A little one on one time was good for both of us.
When we got home Patrick, Wyatt and Wrigley were so excited to see us. You see while we were in Disney, Wyatt, Patrick and Wrigley were moving science forward. Wyatt has been in an MRI study for almost 10 years. This research study has years of longitudinal information about Wyatt and the progression of the disease. Everyone is always so impressed how Wyatt is doing so well and continues to move forward even as Duchenne tries to steal his constant motion from him. Luckily he has Wrigley by his side to help him through the changes and progression, as is the rest of his family.
As this pandemic continues to move forward and change the way we live our daily lives, we have decided that we are not letting it stop us. We will move forward with our plans to make sure we live EVERYDAY to the fullest and love every moment even if it’s hard to slow down because there are so many fun and exciting things we have planned for the future.
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