Alexander was born when I was 13 years old. I was in the room, actually, just minutes after delivery. I was shocked to see spots of vibrant red blood on the cool tile floor. That shock passed when I saw the form of a tiny human being lying on the bare, brown chest of my sister in law. A boy. I had a nephew.
Four years later, I found myself in the same position. Wandering into a room, just minutes after delivery, to welcome another nephew. They named him Renwick.
Alexander was the happiest baby. He smiled often and cried so infrequently that I cannot remember what it sounded like. His dark hair was luxurious and his eyes were deep and warm and true. I saw wisdom in them, in the eyes of a human who was unable yet to speak, to walk.
Renwick’s appearance is strikingly similar to Alexander’s. Their baby photos are often mixed up by those who have not known and loved them as deeply as we have. Renwick’s temperament is different though. He cries so often that I cannot remember what his laughter sounds like.
I am not worried about the yellow in Alexander’s skin. He has jaundice, much like many newborn babies. I am not worried as I unload the dishwasher and think of the future when we will laugh that we worried over nothing. I am not worried.
I am very worried about the size of Renwick’s head. It seems to bulge out in the back more and more each time I see him. I am worried that his crying has something to do with his misshapen head. I am very worried.
Appearances are deceiving.
Alexander is diagnosed with Biliary Atresia, a rare but treatable disease of the liver and bile ducts.
Renwick is diagnosed with AT/RT brain cancer, an aggressive and highly untreatable pediatric cancer.
We are grim.
Alexander spends one day of every week at a children’s hospital in Wilmington, Delaware. His doctors and nurses are kind, optimistic, inhuman. They have seen so much grief in their lives that they can no longer connect with their fellow humans. He undergoes a surgery at just eight weeks old. This surgery is not successful. The doctors change their course of action. They put him on a diet. He drinks so much artificial formula that he begins to smell like a chemical plant. They spend months talking about a liver transplant.
One of my brothers has the same blood type as Alexander. Many of the other tests that he takes prove that a piece of his liver will be an excellent match for Alexander’s small, fragile body. They begin the grueling process.
Alexander’s parents take him on a trip to the beach. They want him to experience sun and sand and the salt of the ocean like small children often do. He struggles on the way home from the beach. He seems unable to breathe. They take the exit toward Wilmington, Delaware instead of the exit toward home.
Most of my family members find themselves at that hospital for the day. I am at home. I wash the dishes and feel positive that there is a light at the end of the tunnel. This is the twenty-first century, after all. Children do not die from rare but treatable liver diseases. We are overreacting.
My positive thoughts are crushed by Alexander’s final breath. The phone call is brief and the explanation, even briefer: he died. A choked sob escapes the swollen throat of the brother whom I have never seen cry.
The black of the funeral, the smallest casket I have ever seen, and Alexander’s ringing laughter are etched into the folds of my brain for all eternity. I am 14 years old and I have known death in its most intimate form, the form which steals the youngest lives.
Renwick’s doctor is concerned that the cause of his unusual head shape is fluid on the brain. He is sent to a children’s hospital in Philadelphia, Pennsylvania. Their find is much more severe: a softball-sized tumor slicing its way through his infant brain.
He undergoes surgery immediately to remove this demon. His surgery is highly successful and the elated surgeon reports to my brother that he was able to remove 100% of the tumor. He lives in this hospital for over two months. He is monitored, he is visited by hundreds of friends and family members. He experiences chemotherapy, that vicious treatment which terrorizes his tiny body.
He comes home and all of his family celebrates with a welcome home party. He turns two years old and his mom and dad cry as they light a candle on a cupcake for the boy they did not think would make it past April. It is October.
Weeks and months, countless days in the hospital pass. Renwick survives hundreds of needle probes, many rounds of chemotherapy, even a small stint with radiation. He vomits routinely because his immune system has become so compromised.
We are used to a new normal. Renwick is three years old and, still, he cannot walk. He has been out of the hospital and cancer free for one whole year. His therapists are proud of him. His mom and dad are cautiously grateful for every moment with him.
He no longer cries. The last time we heard him cry was that fateful April day, just hours before the surgery that would save his life. We are amazed. He will walk soon. He talks more and more each day.
He has beaten this monster. He has never met his older brother.
Perhaps there is a space in heaven where the children who once occupied hospital rooms will play together, experiencing the childhood that was torn from them upon this earth.