We knew that we were created from their love but that their love was an entity separate from us, a circle complete within itself.
I see the kiss, the parting. My mother wheeled through the door, alone. My father, his back to me, placing his hand on that door, praying love and strength and hope to the woman on the other side.
He turned and walked slowly toward me. The sunrise lit his face and I glimpsed the depth of this man's love.
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This love of great self-sacrificing. A love so great that he was willing to bear the pain of being the one to walk alone.
And though surrounded by our love, my father walked alone for the two weeks we waited out her coma, the months of doubt and rehabilitation.
In the end, my mother had lost her speech but she had won her fight to live.
She has not spoken to my father for five years, and for that, he is truly grateful.
Cynthia M. Hamond
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The Angel Who Fetched
Life is the little shadow which runs across the grass and loses itself in the sunset.
Crowfoot
Last Words, 1890
Two years ago, I paced away the longest day of my life in a windowless medical exam room, waiting for the results of a biopsy. My doctor finally gave me the news: I had metastasized squamous-cell carcinoma of the neck. I was told bluntly that I could expect little in terms of long-term survival.
I drove home in a stupor and vomited away the rest of the night. I prayed constantly and desperately those first few months for somethinganythingthat would help me get a hold on my life, but all that kept coming to mind was my old dog, Keesha.
Twenty years before, I had bought Keesha as a tiny puppy for five dollars. She was the offspring of a German shepherd and an Alaskan malamutethe runt of the litter. She had black-and-sand face markings and one ear that never quite stood all the way up.
Keesha grew into a sleek beauty with manners so
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polished I could take her anywhere with pride. She snuggled beside me on camping trips and taught me how to play "throw-the-stick" so that she could fetch. When I cried, she licked my face.
She was my constant companion all through my late teens and early twenties. When I took a position as educator for a local Humane Society, we even became co-teachers. For four years, we visited classrooms and businesses, and taught the community how to avoid being bitten by nasty dogs. Keesha had a flair for theatrics and would peel her lips back and spit out hair-curling snarls on command. She put on hundreds of convincing performances as the world's most vicious animal. And children loved herespecially the sloppy kisses she delivered at the close of each performance.
One day everything changed: Keesha coughed up blood. I learned just hours later that she had cancer. But Keesha kept on teaching between visits to the vet for radiation treatments.
Keesha's cancer appeared as a rapidly growing ulcer in her mouth, which later advanced into her throat. She approached her discomfort during her meals with patience, though, and learned to take smaller, slower bites. Nevertheless, her enthusiasm for dinner never left. The minute her bowl came out of the cupboard, her eyes flashed and her tail rose like a banner. Each meal was welcomed as the best of all.
I remembered Keesha's attitude toward meals after my first cancer surgery left me with a shortened tongue. My tongue was so swollen, meals were impossible. So was speaking.
Thanksgiving was just ten days away. With Keesha as my inspiration, I practiced for the event with Cream-of-Wheat and mashed potatoes. Somehow I managed to swallow turkey and pie that holiday. They remain the best I've ever tasted.
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I continued coping with my illness through positive, moment-to-moment living. This was no small task for me. Again I thought of Keesha. Deep into her disease, she was still chewing bones, savoring our marsh walks, barking at birds, splashing through rain puddles. Cancer had slowed her movements and shortened her breath, but her spirit remained light. She trotted along each trail with her ear-to-ear, good-dog grin, tail held high. Her life unfolded in front of her one paw at a time.
A year into my own cancer, I had another biopsy. Whoever said "Sticks and stones will break my bones, but words will never hurt me" never waited three days for lab results. I took one step at a time out of the doctor's office and into the pre-Christmas weekend, determined to value each moment as it came. I bought myself a sparkling dress for my office Christmas party, scheduled an ornament-making day with my dearest friend, and enjoyed the smell of Christmas-tree lots and popcorn in the malls. Monday afternoon finally arrived: The results were negative. Another crisis was behind me.
I've spent the past two years coming to grips with who I am today, as opposed to who I was before my surgeries. I've lost a few parts. My tongue has been shortened. Several large muscles were removed from my neck and shoulder, so I'm unable to turn my head easily or look up at the sky. Radiation treatments have caused some arthritis in my jaw. The worst, though, is that the radiation also destroyed my salivary glands, leaving me with perpetual "cotton mouth."
Here too, Keesha's approach to her failing body had been marvelously practical and inspirationalshe adapted. When tumors in her shoulder made it impossible to race along her favorite paths, she seemed just as satisfied to limp along and smell the dirt at a slower pace. When she could no longer trudge up the hill in front of our house, she let herself be carried home. When swimming became too much for her, she'd lie in the water and snap at the ripples, barking loudly.
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In my efforts to heal my life, I've learned that by confronting and accepting the truth of my own mortality, I am able to free up powerful healing energy that lies trapped under my fears of death. During this process, I am often drawn to the memory of Keesha's last day with me.
One day several years ago, I took her back to my office at the Humane Society where she had spent so many afternoons asleep under my desk. She walked beside me on unsteady legs, her breathing low and labored. No one can tell me an animal doesn't know what death is. Keesha reached her paw out to me, and my hands shook as I inserted the needle and emptied the syringe. She died quietly, resting against my shoulder, entering fearlessly into that greatest of all mysteries.
How can I ever express what it was like to lose her? There are no words. She was my friend and my teacher. She had faced her life with a dignity I can claim only on my best of days. I mourned her loss as deeply as I would later grieve the loss of a friend or family member. With prayers and tears, I scattered her ashes over the salt marsh where we had shared so many walks.
I have been free of cancer for two years now. For my condition, it's a miracle of sorts, and I'm celebrating wholeheartedly. My doctors now tell me that I might expect a full life if all continues to go well. I know it will.
I also know that when I do leave this world, Keesha will be the first to greet metail flying and voice sounding out joyouslyon the other side. I will stoop and wrap my arms around her neck and feel the grace of her slobbering tongue on my face again.
And when I finally meet my creator, I will offer my heartfelt gratitude for answered prayers and angels that play fetch.
Susan McElroy
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Ben
A baby is God's opinion that the world should go on.
Carl Sandberg
Ben was born on September 20, 1989. Not long after his birth, we learned of his blindness and deafness. By age three, we knew he would never walk either.
From the day Ben was two days old, our family traveled a road we had never envisioned. Hundreds and hundreds of miles to the best doctors and the best hospitals. Hundreds of needles and X-rays, CT scans and MRIs. After that came the contact lenses, braces, hearing aids, wheelchairs, walkers and crawlersalong with all the therapists to show us how to use all of these things. The operations never stop.
Ben's life today consists of his regular teacher, a teacher of the visually impaired, a teacher
of the hearing impaired, an inclusion specialist, an occupational therapist, a physical therapist, a speech and language pathologist, a pediatrician, a neurologist, orthopedic doctors, a pediatric ophthalmologist, an ear-nose-throat doctor, an audiologist, a dentist,
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an oral surgeon and an orthodontistand he is only eight years old.
Yet every morning my little man wakes up with the biggest smile on his face as if to say, "I am here for another day, everybody, and I am so glad."
Our daughter was born three years before Ben. I remember her dad and I staring at her for lengths of time when she was a toddler waiting for the next sound or word to spill out. Every time one did, it was a marked moment in historya topic of proud conversation with whomever had the patience to listen. We truly had a brilliant and remarkable child. We still do.
After Ben was born, our love for him changed our views on what was truly important about our children. It no longer was important how many words were spoken at what age, or what phenomenal development took place sooner than any of the baby books predicted. Our children became individuals, each having wonderful qualities, not to be compared. Their lives were not to be measured by lack of ability or exceptional ability, but by the strength to persevere.
By the time Ben was four, he was quite expertly maneuvering his wheelchair, but he had never spoken a wordonly open vowel sounds. So our family started putting a tape recorder at the table during dinner to record the sounds Ben was making because he clearly wanted to be a part of the dinner conversations. We thought maybe if he heard his recorded voice and ours, it would stimulate something in him.
One day in September 1993, the tape was rolling while I was feeding Ben and making some sounds, trying to stimulate an interest in him. Suddenly, time froze. I'll never forget the look in Ben's eyes, the concentration on his face, the formation of his mouth, how he was looking up at me from his wheelchair when he spoke his first
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three words: ''I love you." I turned to my husband, and he tearfully looked at me and said, "Terry, I heard him!"
Ben said those words for me, and I have it on tape to play back whenever I need to. I'm grateful, too, because he has not said another word since.
But, you know, I don't play the tape that often; I don't need to. I will always recognize the look in his eyeseven though they are blindas he reaches for my face to give me a kiss. That is all I need.
Terry Boisot
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Heaven's Very Special Child
We were on our way to visit an institution in 1954 with our three daughters: Mary, twelve, Joan, nine, and Ruth, eighteen months old. Because of little Ruth, handicapped since birth, we were making this sad and silent trip. We had been advised to place her in a special home. "It will be less of a burden," "Ruth will be better off with children like herself," "Your other children will have a home free of the care of a disabled person."
To break the silence, I flipped on the car radio and heard the voice of a former classmate. I remembered him as a boy without legs. He was now president of an organization employing persons who are disabled.
He told of his childhood and of a conversation with his mother. "When it was time for another handicapped child to be born," his mother explained, "the Lord and his counselors held a meeting to decide where he should be sent . . . where there would be a family to love him. Well, our family was chosen."
At this, my wife Edna leaned over and turned off the radio, her eyes shining with unshed tears. "Let's go home," she said.
I touched Ruth's tiny face. She looked like a beautiful symbol of innocence. I knew at that moment Ruth was
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given to us for a purpose. How miraculous it was that the voice of a friend, with whom I'd had no contact for twenty years, should that day speak to me. Mere coincidence? Or was it God's unseen hand helping us hold on to a little girl who would enrich our lives immeasurably in the years that followed?
That night, Edna awoke at three o'clock in the morning with thoughts that demanded to be written. A pad was on the night table, and in the morning we pieced her notes together into the poem, "Heaven's Very Special Child":
A meeting was held quite far from Earth;
"It's time again for another birth."
Said the angels to the Lord above,
"This special child will need much love.
Her progress may seem very slow.
Accomplishments she may not show,
And she'll require extra care
From the folks she meets way down there.
She may not run or laugh or play,
Her thoughts may seem quite far away.
In many ways she won't adapt,
And she'll be known as handicapped.
So let's be careful where she's sent,
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Come stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from heaven.
Their precious charge, so meek and mild,
Is heaven's very special child."
John and Edna Massimilla
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Lavender Roses
My education about autism began in the 1940s. As the youngest child in my family, by the age of four I knew Scott was our secret, an embarrassment we sent to a back bedroom when company came. His pain and the pain of him were too private to share with others. My sisters and I left as soon as we could, marrying young or attending college across the country. Years later, I heard a psychologist classify our behavior as "sibling flight." It was flight all right, but Scott hadn't chased us away. Fear, shame and confusion had made our home unbearable.
Early on, I thought Scott's disability was the worst curse a family could suffer. I'd seen my parents break under the burden and knew I couldn't follow. Could it happen again? Was it possible that I might father a "child who never grows up"?
This fear plagued me in my twenties, but after five years of marriage, I knew I had to start a family or lose the woman I loved. I traded my nightmares for hopes, and we conceived our first child.
At Ted's birth, I nagged the doctor for reassurance. Was there a chanceeven a small chancethat this perfectly
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formed infant had a flaw? Ted passed every screening. In spite of a cesarean delivery, he earned a nine out of ten on the newborn scalea champion in the delivery room!
Like many men, I didn't know much about babies, but I knew no other baby could compare with my firstborn. Each move, every step and word, seemed precocious and brilliant!
By Ted's second birthday, we noticed little "quirks," eccentricities that suggested he was different (but surely better!) than other children. His language was odd (maybe he didn't need to ask questions). He didn't play with other children (perhaps he preferred adults). His scores on developmental charts started to slip (maybe the charts were wrong).
By his third birthday, we suffered through a series of diagnoses that seemed more like professional guesses: "brain-damaged," "neurologically impaired," and finally, "autistic." We searched for help, ways to "fix" Ted. But the more we learned, the less we hoped. It looked like my worst nightmare had come truemy second family seemed as doomed as my first.
On the positive side, my wife and I had resources my parents had never known: steady employment, better education and access to a university-based training center. Furthermore, society had begun to recognize the rights and needs of people with disabilities. Unlike Scott who'd been born in the 1920s, my child of the seventies wouldn't have to stay home. The law guaranteed him an "appropriate" education. Medical understanding had progressed, too. Doctors no longer blamed parents for the disability.