Written by Mindy Dykes
Mindy is the mother of 9-year-old Connor, who is a brain tumor survivor.
My husband and I agreed from the beginning that we would raise our brain tumor survivor the same way we would his older sister.
There would be rules, guidelines, discipline, limitations and expectations. I mean let’s say that he survived into teenage-hood or adulthood?
We certainly didn’t want to raise a child who couldn’t contribute to society or his community in a positive way. We also agreed there would be love, compassion, hugs and joy.
As Connor’s days grew so did his challenges and hard days. With each year his barriers would become more visible and more noticeable.
He’d fall down between every other house on Halloween trick-or-treating because of depth perception and weakness from chemotherapy and a stroke he had before his diagnosis.
He’d get confused when we’d instruct him to do simple tasks because he couldn’ t hear the correct words, also a result of chemotherapy.
And, he’d have years of sleepless nights due to seizures in the dark hours of the night—a side effect from having a brain injury from tumor removal.
The “not so hard” days and the “hard” days can happen in the same 24 hours. It’s a tricky balance, with emotions sliding from one end to the other on the emotional scale. One minute I am feeling an ache in my heart when I witness him struggle—like when he’s trying to remember where something is kept, like construction paper. And the next moment, he’s showing elation and confidence when he has mastered even the smallest thing, like folding the paper airplane with the paper he found by following directions.
I am always looking for balance, physically and emotionally; bedtimes and reading times, play time and cleaning time, game time and cooking time, the list goes on and on. I will be the first to admit that I fail often, on the balance I seek. But our lovely children teach us when I am tuned in.
One afternoon, the kids had been playing together outside. I had a long list of errands to run and had asked if they wanted to join me. My daughter answered that she would like to come inside to read, Connor was distracted and didn’t answer. He was focused on the sound of a train in the far-off distance. He loves trains, playing with them, building with them and especially hearing them.
To a child with hearing loss sounds influence his entire day, hearing a train miles from our house is a huge win for Connor. I asked for his attention and repeated the question.
He decided in a flash that he would join me on my errands. I urged him to hurry up as we had much to do in very little time. As we were getting in the car and buckling up, my mind went fast to the order in which I should run our errands.
I wasn’t thinking about how handsome he looked in the sunlight, or how well he had gotten at fastening his seatbelt. I was thinking about how I could be the most efficient and save me the most time. I had to get back home to get dinner started after all.
As I put the car in drive Connor had asked, “Mom, can we go find that train?” Oh right, the train. “No buddy” was my response. I didn’t have time to race a train to a crossing; as a matter of fact we had to go the opposite way for our first errand.
He didn’t respond to my quick reply and just gazed calmly out the window. As my car started rolling out of my driveway I thought to myself, what are you doing? This day is a gift, his life is a gift. Make the most of this moment. The stores will be there, the food will get cooked and the errands will get done. Go find that train!
So instead of turning right (the fastest way to the highway), I turned left which brought us straight to the train crossing in town. As I pulled up, the gates went down and the train and its blaring warning signal came closer and closer. We were in the front row of the soon to be passing locomotive!
I put the car in park and made sure all of the windows were open. I did not watch the train go by. Instead I turned around to watch my son. His face was full of excitement and wonder, the grumble of the wheels on the tracks filled the air. The magnitude of the size and speed made his mouth fall open as we could feel the car shake. He waved as he saw the conductor and exclaimed an energetic, “Hello, Train Driver!”
My heart was filled with joy. His was too. In fact, he was the happiest errand buddy that day!
He could not stop smiling or talking to everyone about the train that he had seen. Pure elation that lasted for hours. It was that easy—that easy to give my child a moment of happiness and comfort.
These are the moments that bring balance into our lives. This is what keeps us going day to day, and some days hour by hour.
I cannot control what will happen to Connor’s health or what his future looks like. I can’t predict how many seizures he will have this week or next, nor what his struggles will be in social settings or math class, but there is much I can do. I can give him moments in time that when weaved together make a beautiful and full life. When I do this, the gift is given to me also, and my life is very beautiful and completely full.
Connor’s struggles and challenges have opened our eyes to what is important: Being present. The biggest gift I have been given from childhood cancer is just that, living in the present and taking advantage of the moments given to us.