Our son Aaron was born on September 13, 1990. He was our first child and Susan had had a normal pregnancy and delivery. As Aaron entered the world several small physical anomalies were noted, a lesion on the head, ear tag, extra finger and rocker bottom feet. Aaron had trouble breathing and within seconds the serene delivery room was filled with nurses, doctors and chaos. Aaron was whisked away into the neonatal ICU without Susan getting to hold him. Soon we received the devastating news that every parent fears: "We're pretty sure your son has been born with a rare chromosome disorder known as Trisomy 13 and he is not expected to live long, maybe a few weeks or months," said the doctors.
Several days later Trisomy 13 was confirmed and we took Aaron home. As the nurses said, we took him home to die. As with all parents who have experienced this devastating diagnosis we were in total shock, consumed with fear and hopelessness. Aaron struggled the first few weeks, as did we, sleeping little, feeding little and crying constantly. He had an N/G tube down his nose for feeding and seemed to be in a lot of pain. Soon it was discovered that he had an inguinal hernia -- a very painful and discomforting hernia that needed repair, but no doctor seemed to be willing to perform the relatively simple procedure because of Aaron's heart and lung condition and his terminal prognosis.
I sat out on the front porch stairs with my Dad during Aaron’s christening at home and wept uncontrollably trying to understand how a God of mercy could allow such a fragile child to suffer so. It seemed so cruel and unfair. In the middle of December, about three months after Aaron's birth and shortly before we found a surgeon and anesthesiologist to operate on Aaron, Susan and I had reached our breaking point. Terribly sleep deprived, suffering from grief and enormous stress, the situation at home was getting desperate. We were without any help and the initial support we had received from friends and family was waning.
The alarm rang out, 2:30 a.m. and it was my turn to feed Aaron. Anger and rage welled up inside me, every emotion I had turned to anger. Numb, I arose and stumbled around the kitchen and nursery preparing for Aaron's tube feeding, cursing and swearing at every little thing that went wrong. I roughly grabbed Aaron out of his crib, hooked up his feeding tube and sat down with him in the rocking chair. A housefly annoyingly buzzed around the room, circling my head, then landing on my arm. Every nerve in my body was heightened with emotion and I could feel every movement of the fly. I prepared to slap it, to kill it with my hand -- it flew off, narrowly escaping. As it buzzed around the room I thought to myself, Why is there a fly in the house in the middle of winter? This angered me even more.
It landed again on the back of my neck and I flew around to smack it -- all of my anger was now directed at the fly and somehow I irrationally felt that killing the fly would somehow settle things, it would make me feel better. As I swung to hit the fly I dislodged the feeding tube from the container of formula and milk began spewing all over me and Aaron. I felt an anger now that seemed out of control. Somehow I managed to compose myself enough to clean up and get set up again for the feeding. The fly returned and again it landed on me in places I could not reach, it touched me in places where I didn't want to be touched. Every ounce of emotion I had felt was again directed at killing the fly -- if I could only get rid of this stupid, aggravating fly everything would be better.
The fly buzzed in close. I tensed every muscle in preparation for the kill. Closer, closer, it landed on Aaron's nose. Suddenly, I noticed Aaron was perfectly calm and drifting off to sleep, it was a miracle, and now the fly was going to disturb him! I hesitated ... do I kill the fly and wake Aaron -- or risk leaving it there and possibly waking him anyway. As I drew my trembling, tense arm back to swat the fly, Aaron smiled. Not just a smile, it was the most peaceful, angel-like smile imaginable. How could it be, I thought. How could Aaron be so content with this thing that was causing me so much anger and grief. How could he be comforted by something that was annoying me and touching me in places I did not want to be touched.
A wash came over me. A peaceful revelation. This fly, you see, was Trisomy 13. Aaron didn’t have a problem with it -- he was OK with it. It was me. I wasn't OK with it. But maybe if I could accept this Trisomy thing like Aaron did, then things wouldn’t be such a struggle.
The alarm clock sounded again at 5:30 a.m. and Susan arose to feed Aaron. Minutes later Susan called from Aaron's room . . . "Steve, can you come in here and kill this fly?"
I learned a lesson that night that I believe is summed up with 1 Corinthians 1:27: "God has chosen the weak things of the world to confound the things which are mighty."
Lord, thank you for teaching me to see past outward imperfections and to love others like you have loved us.
