The following article first appeared in the East Greenwich Pendulum on March 8, 1989
It was 20 years ago this week that my three brothers and I lost our only
sister, Stacia. She died on March 5, 1969 of Cystic Fibrosis at the age of
four. Though our time with her was short, the memories of joy she gave us still
remain in our hearts. The pain of her loss has been and is still greatly
felt by all of us.
Being the oldest of "her boys", as she used to call us, I remember more than
my brothers. I remember the good days and the bad days, but it is the good
days I try to hold onto. I was 14 years old when she left us. I remember the short summers we had
together when she was able to play outside; the winters when her bed was
kept in the living room where it was warmest and she could watch my brothers
and I build snowmen in our front yard. I don't think I will ever forget those snowmen - and how slowly they faded
and sank into the ground during the days following her death. They seemed
to cry as I did, leaving me with just black stones where eyes once looked
The disease that took our sister is a genetic disorder, a disease that occurs
about once in every 1,000 births, but is is estimated that one in every 30
people is a carrier of the recessive CF producing gene. Cystic fibrosis changes the normal secretions in the lungs and pancreas into a thick mucus which clogs the lungs of its victims, interfering with
breathing, causing frequent coughing spells and repeated infections. In the
pancreas, the abnormally thick secretions block the passage of vital digestive
fluids, seriously interfering with digestion. At the time my sister had to sleep under a mist tent to breathe and had to take up to eight different medications to survive.
Our sister spent most of her life in and out of hospitals, but the most disturbing
part for me was the fact that her last week of life was spent in a hospital
separated from "her boys". None of us were old enough to be allowed in
to see her. At a little past 10 a.m. on the morning of March 5, she told
her nurse she was tired and she laid her head down for the very last time.
Your boys still miss you, Stacia, as do your mother, aunts, uncles and cousins. We still have dreams in our hearts of what could have been and what will be, someday - when we are together again.
My brothers and I would like to ask all of you who still remember Stacia,
and those of you who may know of some other child with this terrible disease
to donate what you can to the Cystic Fibrosis Foundation. Research is still
being done, and maybe, someday there will be a time when a cure is found.
A time when not one more child will suffer with this disease. Please send your donations to the Warwick Branch of the Cystic Fibrosis Foundation,
at 2797 Post Rd., Warwick, RI, or call them at: 401-739-6900.
My brothers and I would like to thank you all for what you did for us 20
years ago, and what you can do for us now in Stacia's memory.
The Matteson boys, Ernie, Ken, Doug, and Jeff
By E.R. Matteson
The Fairfield Ave. Tot Lot was named in honor of Stacia Matteson. It is located on Fairfield Avenue in East Greenwich, Rhode Island.
When Snowmen Cry
It is the memory of death that lingers with me from the past; my childhood. It is a memory that has become a part of my soul and my very being. I have never forgotten Stacia and she will be with me until my own death. But, I will never get over that day. That day in March of 1969 when my sister died.
She was my only sister and four years old when she left us. She had been sick since birth and always in and out of hospitals, but still I knew her very well. I was the oldest of her boys and her favorite brother and she did nothing without me. For four years I had no friends and I spent most of my time with her.
Stacia had to sleep under a mist tent at night so she could breath and she hated it. She sometimes would cry for hours before falling asleep alone under a plastic tent separating her from everyone. No one seemed to care about her crying, and I would always end up putting the mist tent over a rocking chair and sitting under it with her while I rocked her to sleep. In the morning she didn't want me to go to school and I sometimes played sick to stay at home with her. I think I always knew that she was going to die, but I did not want to know. All I knew was that she needed me now and I tried not to think about anything else.
It was winter vacation and Stacia had just come home from the hospital. It was a cold and bitter week and there had been two huge snowstorms that week so the ground was covered in a two feet blanket of white. Since Stacia could not go outside I made snowmen families in the front yard in front of the big picture window in the living room. She use to watch for hours while my brothers and I populated the front yard with tribes of abominable snowmen.
Toward the end of that week she again became very sick. I wanted her to be put back in the hospital, but I later found out that the only reason she had even come home from there was because the doctors had felt it would be the last time my brothers and I would ever see her. They wanted her to be with us and they wanted her to stay at home as long as possible.
A week went by and Stacia was still at home, but I was back in school. It was a long hard day but when I finally did get home I went right to her. I did not do homework. That was not important. I remember coming home on Tuesday afternoon at the start of still another snowstorm. Stacia was very sick and I knew it. My Grandmother was there helping and I was so glad that she was there. She would know what to do. She always did.
Later that night there was a power failure. It was cold and the snow was coming down hard. I went into the living room, where it was warmest, and saw my sister in the arms of my Grandmother. She was rocking my sister and they were both silhouetted by the flickering candle light. I was scared. There was no place I could go. There was no one I could talk to. I went to bed but cried for hours before falling asleep. I don't know why I cried. I just knew I had to and it made me feel better as sleep brought me peace.
When morning came my Grandmother was still holding Stacia. My parents were getting ready to take Stacia to the hospital and I had to go to school. Many schools were closed that day because of the storm, but not East Greenwich. They were always the last school to close during a storm and today was not going to be one of those days. I didn't want to go but I had to because my Grandmother made me. Before the bus came while holding back tears I talked to Stacia. She was amazed that she was going for a ride in her nightgown and it was still snowing. The bus came and I gave my sister a big kiss. I hated to leave her.
That was the last time I saw my sister alive. She died later that day while I was in school. My Grandmother told me what had happened when I got home. She told me that the last words Stacia said to her were, "Tell Ernie we've got a lot of new snow to make snowmen with." At 10:10 AM on Wednesday, March 5th Stacia told her nurse that she was tired and she laid her head down and went to sleep for the very last time.
I don't remember much after that. I remember crying a lot and taking pills to keep together, but that is all. It was the first time that anyone I loved had died. It has happened many times since then and it seems to hurt more and more each time. But it is always Stacia that I think of. I wonder where she waits for me and when that day will come to see her again. I guess death is only what the living make of it. It is nothing to fear. In fact, it can sometimes be looked forward to. It is a place to escape from life and all of it's eventual depressions. It is a place of silence, peace and nothingness.. It is Love and the bringing together of heavens. It is God........... It is snowmen.
By E.R. Matteson
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