I had never thought much about the saying, “A picture tells a thousand words.” But, as I stood next to my boy in the isle of Walmart, staring at the image on the side of a box, it said everything. It summed up years of struggle and longing. Years of exclusion and isolation. It told a story of pain and triumph. This picture of kids jumping happily on a trampoline, seemed to tell our whole story.
In reality we were not there for a trampoline. We were there for something entirely different. That summer we had begun to spend most weekends at my in-law’s place in the country. We were looking for a climbing structure for the lawn. It was a special gift for our little boy. In retrospect, a trampoline should have been an obvious choice. The fact that we hadn’t considered it spoke to how engrained into our mindset and lifestyle our accommodations and prevention of Gasto-Esophageal Reflux Disease (GERD) had become.
The cold hard truth is that GERD had been ruling our life. It terrorized our entire family for years. It affected everything from eating to sleeping and even playing. While it can have many causes, for our son, the doctors believe dystonia is opening his esophagus. Regardless of the cause, one thing is certain, childhood GERD is a war. Babies who suffer from it don’t eat and when they do it’s only after a battle. As a mom, the heartbreak of not being able to feed your baby effectively is hard to describe. They are so little and helpless. Every time you feed them it’s like pouring salt into an open wound. You are hurting them and they don’t understand why. The most awful part is you can’t stop. So, day in and day out, you have to hold your baby and force him do do something that causes him excruciating pain. Then tragically, after you’ve hurt your baby by forcing them to eat, they vomit it right up. All the pain and sacrifice for nothing. As parents, it is a torture we are forced to repeat.
When my son was 10 months old the discussion of a feeding tube began. Our little peanut had not gained weight or grown in five months. He was still in clothes for a three month old and had fallen to the 10th percentile in weight. We were told if we couldn’t get his weight up we would have no choice but to put in a tube. So, we were advised to keep him upright and do our best to keep food down. Thus began our ridiculously extreme “lifestyle” changes.
Swings, rockers, bouncers, jolly jumpers and tummy time were outlawed, along with anything else that would cause jostling or pressure on his stomach. My arms and back were not strong enough to hold him upright all day, every day. So my little boy rode in the carrier against my chest for 8-10 hours at a time. He ate and slept upright in the carrier, only coming out for diaper changes. Because a full stomach increases the odds of vomiting, I began breast feeding small quantities every 30 minutes during the day and every hour at night. Lying down meant vomiting, so his dad and I took turns putting him in the baby carrier at night. We slept in shifts with our little boy strapped to us upright while sitting in the recliner. When he jumped to the 13th percentile we were able to put the feeding tube on hold, as least for as long as he was stable.
It was over two years later that we were able to start lying him down at night. Our little man, at two years of age, was finally in 12 month-old clothing and had climbed to the 15th percentile. One of the hardest parts was watching him learn that he couldn’t do many things the other kids could do. No gymnastics classes and trampolines. No seesaw at the park and no eating anything without asking mommy first. He would watch kids play with a look of longing in his eyes, but he knew the pain was not worth it.
By the time he was three-and-a-half, with the help of medication, his GERD was classified as controlled. He was free to be a normal kid. It was this clearance from his doctor that led us to the playground section at Walmart. We wanted to get him something to celebrate that he had come out the other side of his terrible ordeal. We wanted to get him something that would allow him to do what he couldn’t do in all the years before. My husband and I stared at all the options, trying to figure out what we should get. I looked down to find my son no longer by my side. I felt an immediate sense of panic as I called frantically for him. His little voice called out, “I’m right here mommy,” but he was nowhere to be seen. I followed the sound of his voice and felt relief when I found him standing behind the box to the left of me. I went over to him, intending to lecture him on how I need to be able to see him at all times. But, when I saw him starring longingly at the box, I knelt beside him to see what he was looking at.
The picture on the box was filled with laughing children jumping on a trampoline. His face did not mirror those of the kids on the box. It was a face of defeat…of resignation. “I’m just looking,” he said defensively. He had this beaten tone to his voice that hurt my heart. He looked like a child who was just told he couldn’t play with the other kids at the party. “I know I can’t have one mommy. I’m just looking,” he said again. My heart broke even more when I realized he thought he needed to defend himself for simply wanting something so seemingly out of reach. I was saddened that he was so aware of his own limitations. Children are supposed to feel limitless, but my little guy knew all too well the risk he faced in even the most innocuous situations.
For so long he had wished to jump on a trampoline, but he had never been allowed. In the world of GERD, jumping like that would have caused excruciating pain. But unlike in years past, we now had the go-ahead from the specialist. It filled me with unimaginable joy that today, I could make it happen. Today I could give my little boy the gift of simply being normal. Today I could get him a trampoline. I looked at my husband and he just nodded. We bought the trampoline and headed home to set it up.
I was giddy as I watched his dad lift him up on the trampoline for the first time. He had the biggest grin imaginable. It was funny to watch him jump for the first time. The sensation was foreign and awkward. He reminded me of a colt trying to walk for the first time. All wobbly and uncoordinated, he couldn’t get his feet to work out the timing and move together. Eventually he figured it out and he was up and away, flying as high as his little feet would take him. Every time his feet left the surface of the trampoline, sounds of laughter hit the air and warmed my heart. I was so at peace and so filled with joy that I didn’t even notice the rest of the family join me outside to watch. “Look at me,” he said giggling, “I’m jumping mom! I’m jumping! I’m jumping!” His laughter completely replenished my tired body and in that moment I could think of nothing I wanted more. He was jumping. He was happy. He was not in pain. I stood on the lawn and cried. He was radiating so much joy it was impossible not to feel moved watching him. He had waited for so long to do something so normal, so common, so ordinary. And yet, his reaction was extraordinary. I looked at my husband who was also beaming, “Who knew a trampoline could make us all so happy?” I said to him, with tears rolling down my face.
Our journey with GERD had come full circle. In the year to come we would have yet another battle with his Dystonic esophagus, but today was a good day. Today our son was just a normal little boy on a trampoline. Together with my husband, we stood on the lawn and watched our little boy jump until the sun went down.