When we first received the diagnosis of Leukodystrophy for our sweet, little guy, many emotions ran through our hearts: fear, anger, frustration, panic, and desperation. One feeling that wasn’t present was happiness.
Happiness was something that we felt, at the time, was lost along with our little guy’s future. Thinking back to the beginning of this journey, when we first heard the announcement of Leukodystrophy, it’s a miracle that we could even put one foot in front of another most days. We began mourning the passing of Stephen before he even left this world. We mourned for the life experiences he would never have, we mourned for all the milestones that he was losing, we mourned for our world without his presence, and we mourned for the future that would be filled with pain and suffering for such a precious child. We carried on for a time, until we realized that while we were grieving the future, the present was here and needed to be experienced.
Living in the Moment
Many doctors’ visits filled our days, with trips to Texas Children’s Hospital. To make these trips more bearable, we began to live in the moment, and suddenly we began smiling more and laughing at the silly, everyday occurrences. Surrounded by other caring families and their children at the hospital gave us comfort, knowing that we were where we needed to be. We stopped wasting the present on the unknown future.
We know that Leukodystrophy means a shortened life expectancy for Stephen and along the way there are major changes for him, but we have met these challenges and tried to keep up the positive energy. It’s not easy some days to find something to laugh or even smile about if we are focused on the monster Leukodystrophy. Nonetheless, we attempt to find a way to brighten Stephen’s days.
Happiness doesn’t always involve complicated activities, but sometimes it does. After careful planning in the form of a Make-A-Wish trip, Stephen, along with his parents, were able to take a Disney Cruise and spend a few days away from hospitals, doctors and everyday concerns. On this cruise, they were able to meet all the Disney characters and Stephen fell in love with Tinkerbell. He adored her and she was so sweet to him and let him touch her wings. Although his expressive language has left him, his eyes and face are still very clear on his adoration for this special person. In fact, for his third birthday he even received a Tinkerbell action figure. He smiles and tries to give her kisses. Who could blame him, a beautiful girl with wings?
Creating Laughter and Smiles
Brightening Stephen’s life has released us from the fear of looking silly because if looking silly brings forth his laughter and dimples, we will do anything. We invent songs for all occasions, such as “Diaper Head,” which involves a clean diaper worn on an adult’s head as an original song is sung. We are laughing along with Stephen, because honestly it is funny-looking. Who would have thought that changing a diaper would bring such happiness to everyone in the room?
It’s not always an adult who is the one who makes us all laugh, though. A favorite song can be used to bring a smile to everyone, when we use the appropriate props. Using a plastic hippo, while we are singing, “I Want a Hippopotamus for Christmas,” gives us an extra nudge over to the happy side of the day. Stephen’s mom worked long hours away from home, and when I sent this picture along, her day brightened immensely.
We have taken Stephen on trips that have brought happiness to us all. He loved the train ride at the San Antonio zoo and we treasure those memories.
His sister will talk to him, read to him and make sure that he knows that he is part of the world that has shrunken, due to his lack of mobility. She has learned to make sure that he is connected to whatever is going on in our life. When no one else can get him to smile, we can always count on this pure love to ease his discomfort.
We try to make sure that his happiness is our number one priority. For example, he used to scream when put in his stander, but once he was introduced to this fun game, “Knock down the blocks to find your friend Caitlyn,” he was all smiles. Strapped in with his AFOs and trying to support his head is uncomfortable, and yet he is now laughing with the distraction of this game.
True Happiness in the Present
Silly songs, games for distraction, supportive friends and the permission to enjoy the present moment have all increased our happiness. Don’t be misled, though, we are very realistic about our sweet little boy’s future. We understand the monster that is eating away at it, but we won’t let it have the most remarkable PRESENT of all: right now, this moment, this smile, this hug and this comforting squeeze.
My mom always said, “Good things come in small packages,” and she was so right, because it only takes a moment in time to make a difference in our lives.