Kelly & Ryan “Chapter Two: Don’t Miss The Magic”

Summer 2018

Summer 2018

Written by Ryan’s mom, Kelly

Thinking about Ryan’s update from last year and it seems so much is status quo. For the most part, things are steady…he is growing into a true teenage boy: facial hair, deep voice, and an appetite that doesn’t stop to prove so. A few minor medical issues that rear their head every so often, bumps through the school year, bumps at home, but for the most part he - and we - are steady. Looking back though there was a definite high point for Ryan & our family that I think has stuck with us and changed us a little more for the better.

It amazes me as I reflect on things how one event can carry us through that whole cycle of emotions. As we planned our summer vacation for 2018 we were filled with excitement about our first trip to the beach - a house on the water with twenty plus of our loved ones! Waking to the smell of the ocean water, the sound of the waves each morning. Eating dinner with our extended family each night, taking in the sights and sounds of a brand new place. Sometimes though, within seconds we found ourselves in grief, thinking about the “what ifs” like….what if  Ryan was a typical sixteen year old? How much fun this would be? What if If he was able to take care of himself more like the other two; what a relaxing trip this could be. Really, the what ifs are endless and they never get us to a good spot. Usually, the sad what ifs are just an extension from the worries we face over something that should be fun, like planning a vacation. We find we worry about the long drive and hope that he will not get sick again, we worry about the hotel stay and hope he will sleep, we worry about the change in climate and environment and hope his sensory system will love the ocean. We were confident he would love the water, but the sand? Definite worries about how that would go down. Followed by hope that he would love it all.   

Ryan is a pretty smart kid. Actually he is incredibly smart and intuitive about people. He reads emotion and stress levels pretty accurately; if I am ramped up, he gets ramped up. So, for the days leading up to the trip, we try to keep things relatively calm. We hide all of the bags and bring them out late at night and line the hallway. When we wake early in the morning, my husband Aaron loads the car before Ryan wakes up, so he isn’t in a panic (if he sees the bags he will insist he sit in the car until we leave town - refusing to dress, eat, etc for fear we will not take him with us). So, day of the trip we managed to load and hit the road relatively simply. The first night in the hotel was met with anxiety of eating dinner in a public place full of families. That can be overwhelming for Ryan so we found a spot in the back, away from the hustle and bustle of everyone. We had family with us helping and I remember we had to start taking turns walking him out of the room to calm him down. This quickly became a bit of an issue for Ryan and as usual, we were stressed and it showed which makes things worse for all of us. As the dining room emptied, the gentleman on duty cleaning came by and checked on us multiple times, insisting that we not rush and offering to help in any way. I remember he was so calm and clearly not bothered by the mess or noise we were making and I was grateful for him. The night moved on and sleep was difficult for Ryan, but not bad enough to go to the parking lot and sleep which we have done in the past trying to not wake the entire hotel. We enjoyed the rest of the drive to the beach with a couple of scenic detours on the way and Ryan, like usual, loved the actual drive.

Photo by    Randy Bacon    - November 2017

Photo by Randy Bacon - November 2017

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When we arrived to the house and unloaded, part of our family went directly to the water. We helped Ryan check out the entire house and watch us unload the bags so he knew we were staying and he was safe. Pretty quickly after we arrived, the magic began to unfold. That cycle of excitement, grief, hope and worry, still showed itself, but it was startling how short the grief and worry were and how long the pieces of excitement and hope stayed. We were surrounded by our village of people which made a huge impact… because it was also Ryan’s village. We were in a house with twenty people that loved us and loved him deeply. Everyone was rooting for us that week. Everyone saw up close how hard even the small things could be and all of our family stepped in to be a help. From taking turns feeding him, taking him for a car ride, helping schlep everything down to the beach, keeping an umbrella over him, bringing snacks… there were a lot of extra hands. I could not guarantee this, but I am confident we were covered in prayer by the whole houseful of people daily. Not to mention the love. It was abundant everywhere.

What I found even more impactful was that our village grew. We met the people on the beach that parked themselves near us everyday and everyone wanted to know about Ryan. Our normal day was that our parents took Ryan for a ride in the morning so we could eat, dress and hit the beach for a bit. When they arrived back, we dressed Ryan for the beach and headed down. Ryan lounged for a while everyday in his chair under the umbrellas (we found a way to keep the sand out of his reach and off of him - it was not a good mix!). Before long, we put on his life jacket and headed out to the waves. He laughed and smiled and soaked it all in. He loved the feeling of the waves rolling in against him and he wanted to simply stay out and bob….all afternoon! For hours! He was incredibly happy and the people around us on the beach turned into his biggest fans. A dad wearing an Alabama hat called Ryan, “Bubba,” everyday and asked him how he was liking the beach. Another family waded out into the water to visit with us; they have a son with significant special needs that they can no longer care for in their own home. He was unable to join them at the beach, and his mom, dad, and sisters missed him. The dad in fact, stood out with us for what seemed like hours and held Ryan in the water and talked to him. It was very clear that Ryan was helping this dad with his own grief. The entire week continued in this way. Magic unfolding each day in the water and the joy on his face clear for the world to see. The worries and grief faded away and were replaced with gratefulness and hope that the night and the next day would be just as amazing.

In the midst of the normal daily grind it is easy to miss the magic. It is so easy, (especially for me) to find myself consumed by the sad, the worry and the grief… the “what ifs”. This vacation though, showed me that when we simply pay attention, there is magic happening all around us. The people surrounding us are rooting for us even when think we are too busy to see us, they are covering us in prayer and love… and not just our family. I think that is what really changed me. The love others, complete strangers, showed for us. It is hard to write for Ryan, as everything I say is really my story and my perceptions. However, I am confident if Ryan were to tell us what the highlight of the past year has been, it would be this trip to the beach. The joy is clearly written on his face.

December 2018

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