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In June of 1978, I was 18, making summer vacation plans, and preparing to attend college a thousand miles from home. I had one objective; to get the hell out of Dodge and start my life. I was unaware that the universe had life-altering plans in store.
Instead of bidding farewell to high school friends on the shore of a Carolina beach, I spent the first weeks of that summer saying goodbye to my baby brother in a hospital room. He died from a brave battle with cystic fibrosis at the age of nine.
This was 46 years ago, and the pain is still present, the ache deep. And the tears are still fresh.
I got the news at age eight that I was going to be a big sister, and being the only girl so far in our family, hoped for another girl. My two older brothers were useless playmates because neither would help me dress my Barbies or do fun girly things. I was too young to process the fact that by the time a baby sister would be old enough for Barbies, I would have moved on to real-life Kens.
Instead, I got Jeffrey Scott. He was born in 1969, a healthy eight-pounder with chubby cheeks and dark hair. His first few months were typical except for his susceptibility to catching colds that eventually evolved into pneumonia. Mom noticed his skin exuded a salty taste as if he had emerged from ocean waters. He was nine months old when it became clear that something was very wrong with Jeffrey.
A diagnosis of cystic fibrosis was confirmed, a debilitating genetic illness that causes thick mucus to collect in the lungs, digestive tract and other areas of the body. There is no cure and the life expectancy for patients in 1969 was 11 to 15 years (in 2024, the average age is 44 years).
A sick child drastically changes the dynamics of a family. My parents, overwhelmed with the physical, mental, emotional and financial challenges, had only each other as support. Jeffrey’s daily physical therapy was a routine called postural drainage. A cupped hand sharply claps the chest area, dislodging the mucus. Mom served not only as our disciplinarian, housekeeper and cook, but also as Jeffrey’s primary caregiver.
My two healthy brothers and I did not receive the attention we needed and deserved. Emotions were raw and contagious and arguments quickly escalated. Besides experiencing the usual teenage angst and insecurity, we faced bouts of anger, abandonment, melancholy and dread.
Therapy would have been an immeasurable benefit for our entire family, but this type of private professional help was an unaffordable luxury. My only form of therapy was keeping a journal.
Jeffrey was a jokester and our daily dose of joy in a chaotic household. He had an infectious laugh and sense of humor, with a penchant for wicked sarcasm. He was a born mimic and loved to imitate the popular “shock rocker” Alice Cooper. Sporting face paint, Mom’s blood-red lipstick and a fake snake coiled around his neck, he would race into the room and belt at the top of his lungs, “No More Mister Nice Guy!”
He was artistic. He fingerpainted a colorful blob of bold colors, entitling it, “Flowers Growing at the Dump.” Because of the health risk posed by other children, he was homeschooled. He missed out on class events but had neighborhood friends with whom he staged afternoon front porch productions.
He knew that several of his friends with cystic fibrosis died, but believed he would see them again. Jeffrey loved to attend church and articulated his thoughts about an afterlife, often saying, “I can’t wait to see heaven.”
When pneumonia sent Jeffrey to the hospital early in July, his journey was over. The moments just after his departure from life were sacred yet devastating. In the waiting room, we heard Mom’s scream. We met her in the hall as she fled Jeffrey’s room, collapsing into the arms of her three surviving children. It was a moment of agony.
Although my feelings were jarringly complicated, I felt relief. Jeffrey’s fragile body could no longer sustain the ravaging effects of cystic fibrosis. The only comfort death brought was an end to his suffering.
For my parents, the void left by Jeffrey’s absence was great. Within three months, they lost three children with Jeffrey’s death, my leaving for college and my brother’s marriage. I believe their union became stronger and they were together until my dad died in 1989.
A message from The Compassionate Friends, a national support group for those grieving the death of a child, grandchild or sibling, expresses the loss of a sibling this way: “When your parents die, it is said you lose your past and when your child dies, you lose your future. However, when your sibling dies, you lose a part of your past, your present and your future.”
My brother would be 55 now but will forever be a boy of nine. The hole in my heart is still there, but his optimistic outlook was one I try daily to emulate.
In the summer of 1978, Jeffrey was excited to become an uncle for the second time. He adamantly wanted to meet who was already named Brian Michael and NOT another niece. As fate would have it, his niece was born at the same hospital where he would soon die, on different floors.
The staff was told of Jeffrey’s condition, so permission was granted to allow a nurse to bring the newborn to his bedside. The nurse leaned down and told him she had brought a surprise.
When Jeffrey opened his eyes, saw the pink blanket and heard the name, he said in a whisper with a slight grin: “Aw, Patricia Kathleen. She’s so beautiful.”
Jeffrey passed away two days later. The circle of life was complete.
Have any of you lost a sibling? Let us know in the comments below.
Sally Deng
