Shortly after Matthew Maddox was released from his first stay in the hospital, it was determined that he had acute myeloid leukemia and his white blood cell count had fallen to zero. Matt went back to his cagelike crib at All Children’s hospital in St. Petersburg, Fla., where I met him while documenting his life.
Childbirth. To many, it is a happy moment, a miracle, the genesis of life and a time of overwhelming emotions. It is a time when a new life begins for not just the child but also for the family. When Matthew Maddox was born, in addition to being told, “It’s a boy!” his mother, Vanessa, was informed that her son’s lungs were not fully formed and there were holes in his heart.
So began Matt’s life in and out of hospitals. Rushed an hour north from his mother, who was recovering from the emergency Caesarean section, isolated in a sterile environment to allow his lungs to heal, Matt’s first room was a bubble. Four days later he would see his mother again and months later he would briefly be free.
He fought hard. Within a half-year his lungs strengthened and the holes in his heart began to heal, and he was released. For a few months he was able to return to his home in Sarasota, Fla., and experience the freedom of being a child. Unfortunately, it did not last.
I have fond memories of my childhood in the Sierra Nevada Mountains. Many days were spent roaming through the vast jungles of myrtle and red-barked manzanita that surrounded my home. Amongst the pines, I created new worlds and made friends with bugs. By evening I would be covered from head to toe in earth.
My parents have volumes of photos that document my diapered adventures in the dirt with my trucks, learning to walk by clutching the mane of my collie, Dustin, who looked like Lassie, and overall showing my amazement at my surroundings.
My earliest memories are not so much scenes as they are sensations. Warm air rising off of damp grass that has recently been mown; the smell of the dusty ground and dried pine needles mixed with the potency of scotch bloom in the summer; and wood fire barbecues on Fridays. All these smells, when triggered, bring back a time I wish I could return to, if only for a while.
Studies have shown that scent is behind the deepest recollections. Think of a time when you have caught a whiff of something in the air that transported you to another place.
Aside from the maternity ward where my sister was born, I had never seen a child’s wing in a hospital. It had the sad feeling of a nursing home for the young. That indescribable smell, often attributed to cleaning products, was so strong that even if someone didn’t know where they were going, they would know immediately they were in a hospital. The lights were off-putting tungsten yellow and created the only sound, a dull hum, in the room when it was silent. Although there was a television, it remained off most of the time, and there was no radio. The only window was drawn shut, but it wouldn’t have offered much more anyway being tucked, as it was, in far corner of the room by the bathroom.
The centerpiece of the room was the crib. Metal bars at least 3 feet high on either side were locked into place around Matthew when I first saw him. His sleeping hand clutched a bar like an unjustly convicted felon’s. Plastic covers were rolled up above the bars that when in place would make the crib look like a wagon in the circus containing some exotic beast.
Around the boy lay his prized possessions, accumulated over 18 months of living. A toy guitar, musical piano and other such pulsing and flashing treasures calmed him when he was upset or discomforted. Vanessa knows which toys to bring out when such a time comes to return the light to her son’s eyes, removing him, if only briefly, from his surroundings.
“Maybe we can go home tomorrow,” Vanessa says. “Cross your fingers and pray for us.”
I, too, had a crib when I was young. It was made of brown wood, and I recall loathing naptime in the late afternoon. Listening to stories on tape, I would look through my bars at waiting toys that wanted me to take them again into my imagination. When I would hear my dad’s truck coming up the driveway, I knew I would no longer have to remain behind those bars, as my mom would come to take me to greet him.
Fond as my memories are, they plagued me after learning Matt could not leave his room and his father had never come to see him. In fact, Matt’s father wouldn’t even talk to his son on the phone when Vanessa had tried to contact him.
“Maybe we can go home tomorrow,” Vanessa says. “Cross your fingers and pray for us.”
Matt’s crib and room are his reality. There will be no playing outside in the near future for him. While taking his medications, delivered through tubes in his chest, Matt watches his favorite Baby Einstein videos and plays with his toys. A life of tubes, wires and syringes surround him. Trays of baby food, bottles and medications are brought in regularly. Every morning Matt and his family wake up to this life.
I was a visitor to Matt’s world, able to go home that evening knowing that tomorrow I would have the freedom to go beyond my room. Childhood is not something to be taken for granted. Neither are the memories that we call upon from a time before the realities of hardship and stress are known. My memories are not something I take for granted; I treasure them. But why should I be so fortunate when there are children like Matt who, for now, may only know the smell of disinfectant?
When I compare Matt’s life to my own childhood, it’s tempting to feel guilt. But I also feel honored, that Matt and his mom let me into their lives. I spent a day, a single day, with them. I told their story.
Cross your fingers and pray that tomorrow will come soon for Matt and his family, so they, too, can go home.
