| TREASURES OF UNEXPECTED BRIGHTNESS by Howard Martin |
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From a medical point of view, the shape of the mystery was quite similar for each of
them. In about their third year of life, they began to have trouble breathing and would
sometimes poke their tongues out between their teeth, as if clearing a space for air.
Their stomachs began to swell (actually it was caused by enlargement of the liver and
spleen), their hair grew thicker, and the shape of their faces changed. At a certain
point, they stopped learning new words and began to forget some of the words they
already knew. Over long months, they got weaker and weaker, unable to get out of bed,
unable to feed themselves, unable to tell us where they were hurting. Their resources
for fighting infection dwindled to zero and in the end they had no strength left to live.
Olive died when she was 10. Alison died when she was 17. Jeffi died a few weeks after
his 13th birthday.
I cannot honestly say that life was easy for us during those years. It sometimes seemed
as if chaos had descended upon our house and we were constantly beset by small
disasters: the keyboard of the baby grand piano tattooed with a screwdriver; an
antique dresser redecorated with a bread-knife; hamburger meat from the refrigerator
randomly applied
to the dining room window; ink spilled in the aquarium and the fish belly up on the
surface of the water; homework assignments spoiled, precious possessions lost, trips
cancelled, visits to neighbors or friends cut short. My other siblings and I have many
stories to tell--of awkward moments in public places, of messes to clean up, of
sleepless nights, of emergency-room visits, and of baffled doctors coming and going.
Every night, at our family prayers around the dinner table, we asked for a miracle--
that Ollie, Allie and Jeffi would “get better.”
We never saw the miracle we had most dearly hoped to see. I guess
that’s always the way it is with prayers. We did, however, have hints of another kind
miracle, and bit by bit, we learned to see our siblings as gifts in our home just the way
they were. The presence of these three Jellybeans brought treasures of unexpected
brightness to our family.
Among these treasures was the gift of song. My beautiful sister, Olive, was a singer.
Long after she had forgotten many other things, she remembered the words and the
music of songs she had learned in the first five years of her life. Throughout the days
she lived upon this earth, her voice remained pure and true, and the melodies she sang
could fill our hearts with joy. She loved the old English folk song about London Bridge:
London Bridge is falling down,
Falling down, falling down.
London Bridge is falling down
My fair lady.
She would sing the refrain over and over again—my fair lady, a-lady, a-lady-- and we
would all join in, answering her with the same words. The sweetness of the sound, the
comforting familiarity of it, lingers even now in my memory.
Is there such a thing as a “gift” of serenity? If there is, then that’s the gift my third
sister, Alison, brought into our lives. When we looked into her still, brown eyes, we saw
no hint of anxiety or despair. We perceived, instead, a gentle re-assuring light, that
seemed to suggest that we were safe in the universe, and that there was no reason,
ultimately, to be afraid. “Luh-hly,” she would say as she sipped a cup of tea, “Lovely.”
She saw loveliness in a cup of tea and in the simple fact of her existence. By making
short poems of her wonder, she revealed the essence of her life and made her own
irreplaceable contribution to the world.
My little brother, Jeffi, gave us the treasure of laughter. His art was acting and he
would put shows on for us at the drop of a hat. With his mother’s white gloves pulled up
to his elbows, he’d give an impression of a traffic cop directing imaginary traffic along
imaginary streets. He’d lace up his dad’s work boots, several sizes too big, and offer an
improvised scene of a workman tending the family garden, chopping away at the lawn
with a pair of long-handled edging sheers. He’d dress himself as a motor-scooter rider,
crash helmet, riding gloves and all, and pretend he was speeding to far-away places,
beeping the horn at slow-coaches and Sunday drivers on the way.
Jeffi saw himself as an entertainer and, in his own way, as a social critic. He thought
dirty socks were a social problem, especially when they were left lying around the
house. He would pick up a pair of well-used hose—never his own—and make a grand
gesture of waving them in the air with one hand and holding his nose with the other.
“PEEYEW” he would say, “PEEYEW” He’d grin and dance and mimic and wrestle and
play practical jokes, with never a hint of malice, and when the show was over, he’d
give away strong warm hugs. He loved us all— even the stranger who came to the door—
without condition. What more could we have asked?
In one of his books of Celtic wisdom, John O’Donohue writes: “The Divine Artist
brought no child into the world without the light of Divine Beauty.” I was privileged to
catch glimpses of that beauty in faces my own beloved siblings and I continue to see it
in the lives of the hundreds of young people, with and without disabilities, who
participate in the Jellybean Conspiracy. I can think of no better way to pass on the
treasures brought into the world by the three Jellybeans I know best or to honor the
gifts of Jellybeans everywhere.
them. In about their third year of life, they began to have trouble breathing and would
sometimes poke their tongues out between their teeth, as if clearing a space for air.
Their stomachs began to swell (actually it was caused by enlargement of the liver and
spleen), their hair grew thicker, and the shape of their faces changed. At a certain
point, they stopped learning new words and began to forget some of the words they
already knew. Over long months, they got weaker and weaker, unable to get out of bed,
unable to feed themselves, unable to tell us where they were hurting. Their resources
for fighting infection dwindled to zero and in the end they had no strength left to live.
Olive died when she was 10. Alison died when she was 17. Jeffi died a few weeks after
his 13th birthday.
I cannot honestly say that life was easy for us during those years. It sometimes seemed
as if chaos had descended upon our house and we were constantly beset by small
disasters: the keyboard of the baby grand piano tattooed with a screwdriver; an
antique dresser redecorated with a bread-knife; hamburger meat from the refrigerator
randomly applied
to the dining room window; ink spilled in the aquarium and the fish belly up on the
surface of the water; homework assignments spoiled, precious possessions lost, trips
cancelled, visits to neighbors or friends cut short. My other siblings and I have many
stories to tell--of awkward moments in public places, of messes to clean up, of
sleepless nights, of emergency-room visits, and of baffled doctors coming and going.
Every night, at our family prayers around the dinner table, we asked for a miracle--
that Ollie, Allie and Jeffi would “get better.”
We never saw the miracle we had most dearly hoped to see. I guess
that’s always the way it is with prayers. We did, however, have hints of another kind
miracle, and bit by bit, we learned to see our siblings as gifts in our home just the way
they were. The presence of these three Jellybeans brought treasures of unexpected
brightness to our family.
Among these treasures was the gift of song. My beautiful sister, Olive, was a singer.
Long after she had forgotten many other things, she remembered the words and the
music of songs she had learned in the first five years of her life. Throughout the days
she lived upon this earth, her voice remained pure and true, and the melodies she sang
could fill our hearts with joy. She loved the old English folk song about London Bridge:
London Bridge is falling down,
Falling down, falling down.
London Bridge is falling down
My fair lady.
She would sing the refrain over and over again—my fair lady, a-lady, a-lady-- and we
would all join in, answering her with the same words. The sweetness of the sound, the
comforting familiarity of it, lingers even now in my memory.
Is there such a thing as a “gift” of serenity? If there is, then that’s the gift my third
sister, Alison, brought into our lives. When we looked into her still, brown eyes, we saw
no hint of anxiety or despair. We perceived, instead, a gentle re-assuring light, that
seemed to suggest that we were safe in the universe, and that there was no reason,
ultimately, to be afraid. “Luh-hly,” she would say as she sipped a cup of tea, “Lovely.”
She saw loveliness in a cup of tea and in the simple fact of her existence. By making
short poems of her wonder, she revealed the essence of her life and made her own
irreplaceable contribution to the world.
My little brother, Jeffi, gave us the treasure of laughter. His art was acting and he
would put shows on for us at the drop of a hat. With his mother’s white gloves pulled up
to his elbows, he’d give an impression of a traffic cop directing imaginary traffic along
imaginary streets. He’d lace up his dad’s work boots, several sizes too big, and offer an
improvised scene of a workman tending the family garden, chopping away at the lawn
with a pair of long-handled edging sheers. He’d dress himself as a motor-scooter rider,
crash helmet, riding gloves and all, and pretend he was speeding to far-away places,
beeping the horn at slow-coaches and Sunday drivers on the way.
Jeffi saw himself as an entertainer and, in his own way, as a social critic. He thought
dirty socks were a social problem, especially when they were left lying around the
house. He would pick up a pair of well-used hose—never his own—and make a grand
gesture of waving them in the air with one hand and holding his nose with the other.
“PEEYEW” he would say, “PEEYEW” He’d grin and dance and mimic and wrestle and
play practical jokes, with never a hint of malice, and when the show was over, he’d
give away strong warm hugs. He loved us all— even the stranger who came to the door—
without condition. What more could we have asked?
In one of his books of Celtic wisdom, John O’Donohue writes: “The Divine Artist
brought no child into the world without the light of Divine Beauty.” I was privileged to
catch glimpses of that beauty in faces my own beloved siblings and I continue to see it
in the lives of the hundreds of young people, with and without disabilities, who
participate in the Jellybean Conspiracy. I can think of no better way to pass on the
treasures brought into the world by the three Jellybeans I know best or to honor the
gifts of Jellybeans everywhere.
