Just a few years ago, on a beautiful spring day, my husband stood calmly waiting for me to uncouple a shopping cart from one of the long trains that are docked at the entrance to Costco. Standing six feet, three inches tall, he was wearing khaki shorts and a black T-shirt with the colorful image of a Chinook salmon. A couple, walking past, laughed out loud at the instructions: Spawn until you die!
Randy was a biologist and all forms of reproduction were honored and worthy of emphasis. He used to enjoy reactions to this shirt but on that day he ignored their laughter, seeming preoccupied. There was no indication that something was terribly wrong.
As we moved into the store, Randy’s body suddenly stiffened, seeming to freeze in mid-stride, like someone had accidentally pushed ‘pause’ on a remote. I followed his gaze across the warehouse to find that it had locked on a young man with Down Syndrome. Randy began pointing toward the boy, shouting in alarm, “LOOK! That guy is MESSED UP!” He started pulling me in that direction. I knew that he wanted us to get as close as possible, so he could be sure that I saw what he saw. I also knew that Randy would continue to shout, point, and follow the boy through the store if I couldn’t redirect him. I tried pulling him back while responding in a reassuring tone. “That’s a NICE GUY! He’s like our Scooter!” When he showed no sign of stopping, I pushed my cart across the aisle in front of him. He firmly moved me and the cart out of his way. In desperation, I grabbed a huge Costco-sized bag of potato chips that were on display, waving them in his face. “Look! Look!”
My tall, attractive, fifty-five-year-old life partner had clearly forgotten what he once knew about Down Syndrome. Yet, he had not forgotten how utterly delicious potato chips are. Randy blissfully surrendered to the salty crunch, while I swallowed the bitterness that crawled up my throat at this cruel injustice.
The boy and his family moved safely out of view, unaware of the little scrimmage that had just taken place. This time, I didn’t have to pull the ‘business card’ from my pocket, which I usually offered after an ‘event’. It says, Please excuse my companion’s language or behavior. It is caused by a form of dementia, FTD, that is similar to Alzheimer’s Disease. The cards were frequently tossed on the floor and occasionally in my face, because I offered them at the precise moment that his victims were attempting to escape. They had not invited this into their lives. I understood.
Randy was diagnosed with FTD several years before that Costco visit. He had gradually lost his ability to work, ride his beloved bicycle, and drive his truck. He could no longer manage money, make logical decisions, or adhere to social norms. However, he still knew me and most others who were important to him. It was not always clear precisely when something he had previously known, had completed the process of vacating his accessible memory. This scientist had once understood how an extra chromosome could be duplicated into every cell of a developing fetus, as it split and multiplied, eventually becoming an infant with Down Syndrome. Now he didn’t. I considered that if he could no longer know this, then he no longer knew how it was an inseparable piece of my son, Scotts, identity. I realized in those moments that I had deliberately ignored important clues.
Just a few weeks before, Randy had refused to engage Scott during a visit. Rather than the usual bear hug, Randy had greeted him with a look of detached confusion. At the time, I told myself that it was just a mood. Randy became visibly upset when Scott teased him in the same way they had teased each other for years. Scott called “Look!” while pointing away from the table to steal a bite of food off Randy’s plate. There was no exaggerated dismay or playful retaliation from Randy. Instead of laughter, Scott received a silent frown. Randy wouldn’t share the big TV so Scott could play Wii Bowling. There was no invitation to walk up to the mailbox together, or to creep outside at dusk and call, ErrrReet, ErrrReet, to excite the Chorus Frogs who lived in our pond. Randy had refused to play checkers with him. Finally, when Scott grabbed his wallet off the table and ran, giggling, to hide it, Randy did not chase him in fun… like he used to. He became upset and shouted, “WHY DID HE DO THAT?”
Scott was devastated. His face was ashen and he avoided eye contact. He grew very quiet, staying uncomfortably close to me the rest of that weekend. He watched Randy warily while rocking back and forth between his two feet, a sure sign of distress for Scott. I reassured him that he had done nothing wrong. I told him that Randy’s brain was sick and not working right. Whatever Scott understood about that explanation, it didn’t change what he felt. Randy didn’t love him anymore.
Weeks later, in Costco, I finally understood that a fierce and tender piece of myself had already unraveled from Randy’s mind. Scott’s story is a chapter from my story. It was woven into the fabric of our relationship. How Randy had responded the first time I told it to him was one of the reasons that I began to love him. He became the keeper of all my stories.
As I absorbed the reality of this loss, a vivid image filled my mind. Thousands, maybe millions, of words and pictures tumbling out of Randy’s brain, scattering across the concrete floor to pile up around my feet and legs, higher and higher. I also began to unravel.
The despair I felt was not unlike the day my son was born. This wasn’t what I had planned and Randy was no longer the person I had wrapped my life around. While I celebrated every milestone Scott reached, each day with Randy was now measured in loss. He had gradually devolved into an ignorant, self-centered, impulsive child, who happened to be 6′ 3″ tall. His generous, thoughtful, and witty qualities had been replaced with a random goofiness. He was beginning to need physical care and protection. His keen intelligence was gone, and he had lost his deep sense of compassion and empathy, along with his ability to love.
Feelings of love originate not in the heart, but in the brain, which is also responsible for telling the heart to keep beating. It seemed cruel, even pointless, for love to be erased while the heart continued beating. On the drive home, I began to grieve like a widow without a body to bury. I was grieving for myself and for what I had lost.
I eventually scooped up Scott’s story to cradle in my own mind again. It invited me back into that sacred space between knowing and not knowing. It is always peaceful there. I began to write Scott’s story down on paper, resurrecting the words and images that Randy’s brain no longer held. As I did this, I found that I was also resurrecting the man I had fallen in love with. There he was, sitting next to me again… listening.
Like patching holes in a tattered, beloved, blanket, I was warmed when Randy’s pre-dementia face came flooding back, and I heard his chuckle. I could see his sparkling blue eyes narrow or widen… at all of the right times. I witnessed his tears well up again, while his head shook back and forth in disbelief. I felt his warm lips on my forehead and his long, beautiful, fingers laced with my own. I also remembered how he had researched so that he could better understand the syndrome that had shaped my son’s mind and body. Randy’s admiring smile, as he called me “courageous” was like a shot of brandy on a cold night, and I felt it moving through my veins again. As a young woman, I had tripped, crawled, and stumbled toward the courage that Randy so thoroughly embraced. I would discover that he was actually attracted to my strength, rather than threatened by it. He didn’t want me to pretend, and I knew I could love a man like that.
As long as I am able to remember the stories that we shared with each other, the witty, intelligent, kind and loving Randy won’t be lost.
The world has changed since 1967, when I was 21 years old and expecting my first child. My first husband was in the army and had spent a year on the border of Thailand and Vietnam, running supplies into the war zone. I joined him when he was stationed at a training base in Ft. Smith, Arkansas, and soon became pregnant. We had been looking forward to returning to California after discharge, which would be a few months after the baby was born.
One morning, my friend Dagmar was visiting. Holding a cup of coffee, she gazed out the window at a boarded-up old building in the field below. We lived on the edge of town, in a one bedroom apartment built over a garage. There had been a deer browsing there just a few moments earlier. Suddenly she called me over to point out a young man, not a deer. He was stocky with an awkward, flat-footed gait, and his tongue protruded from a slightly gaping mouth. As we watched him, I realized that he had features I was familiar with.
I was 9 years old when I noticed a strange girl next door to the house that my family was moving into. She was standing in her yard, watching us through the wire fence, with her head tilted to one side and her tongue protruding from her mouth. Her eyes were slanted, she had short arms and legs, and her words were difficult to understand. I asked my mother, What’s wrong with that girl? She explained that she was “a Mongoloid”. Not a child with a condition, but a condition that had been tossed over the child like a hooded cloak on Halloween, hiding everything else that she was. Other questions like, “What made her that way?” were answered with Only God knows. The conversation was firmly terminated when she said, “There, but for the grace of God, go you!” My mother had a habit of conveniently calling up God to explain things for her. I felt tremendously grateful that God had ‘graced’ me, by not making me like that. I was left to wonder what the girl had done to upset God. It was my first exposure to Down Syndrome.
While Dagmar and I watched the young man, I noticed that he was clean and neat. Someone cared about him. He was walking around the old structure with a focus, studying each window carefully, his head tilted. When he picked up a piece of metal from the ground and began to pry the plywood off of a window, it seemed that a criminal act was about to take place. Dagmar grabbed the telephone to dial the police. I took it from her and said, “Maybe we should try to talk to him first.” She replied, “He could be dangerous!” and then added more gently, ‘He is retarded. He won’t understand what we are saying. Besides, he might get hurt.” She reached for the phone again and dialed. As she explained to the dispatcher what was happening and described the suspect, I could hear the voice on the other end say, “Oh, that’s Tommy. We’ll have an officer come by and pick him up. He lives with his Grandma a few blocks over. He slips out for a little adventure once in a while. Thanks for calling.”
A few minutes later, a patrol car leisurely maneuvered through the dry grass toward the old building. Tommy stood calmly, watching it approach, and then walked over and got into the front seat. It was clearly not his first ride in a police car. I was touched by the gentle policing, but there had been no burning question in my mind about why it was so rare to see people like Tommy in our community. As we watched them drive away, dust swirling behind, I rubbed my 6-month pregnant belly and said, “I could handle anything but that.” Dagmar somberly nodded in agreement. I didn’t know that I would soon be presented with an answer to the question that I hadn’t yet thought of asking.
Two and one-half months later, I woke to find four men standing silently at the foot of my bed. In my medication induced dream state, I thought they might be angels. Unlike the beautiful female angels from Sunday school stories, they did not open their arms with reassuring smiles. These man-angels clasped their hands in front of them like security guards. I did not feel reassured. As I struggled to focus, I realized that one was my husband. His skin was curiously grey and his red eyes looked less like an angel and more like a vampire who’d been out all night. He seemed helpless, yet somehow dangerous, all at the same time. I was to become more familiar with this confusing trait, but it took a very long time to understand the crippling danger in persistent emotional and intellectual detachment.
It gradually became apparent that I had not been dreaming. The memory of a tiny, beat-up, little baby that they wouldn’t let me hold, crawled back into my mind. It had been four days, and all of the other mothers on my floor, including my roommate, Debbie, had been holding and feeding their babies on a regular schedule. I had been asking the nurses when they would be bringing my baby to me. They always looked away, saying, “You need to get stronger” or “The doctor will be talking to you soon.” Each time I asked, they would give me a little white pill, called “Doctor’s orders” and I would take another nap.
Two nights before the angel lineup, I had gotten out of bed and shuffled past the empty nurses’ station to the big window around the corner where the babies were positioned in a row, for family and friends to see. The girls were wrapped in pink blankets and the boys in blue. The family name was printed on a tag and placed on the bassinet so that it could be seen from the window. I moved up and down in front of that window three times, but couldn’t find our name on any of the blue babies. Then I noticed a blue bundle placed in the very back of the nursery. I tapped on the window so the lady tending to the infants would look up. I pointed to the bundle in the back and showed her my wrist band. She looked terrified, shook her head “no,” and picked up a wall phone. Moments later a 6-foot tall woman, with huge shoulders and hands, came speeding around the corner from the nurses’ station, demanding to know what I was doing there. She escorted me back to my room, saying that I had defied doctor’s orders. I began to feel the familiar burn of rebellion stirring in my newly emptied belly…
The next night, I crept down the hall again and ducked into a bathroom near the nurses’ station, until I could be sure the coast was clear. When I got to the window, a different woman was taking care of the babies and so I tapped on it again. This time, when I showed her my wrist band and pointed to the blue blanket in the back, she moved the bassinet forward so that I could see the baby.
My tiny 5 1/2 pound son looked like he’d been thrown out of a moving vehicle, which I suppose he actually had when he was finally ejected from my writhing body. His little head was splotched with blood blisters and wildly misshapen, his eyes still swollen nearly shut. Both sides of his head had dark purple bruises from the forceps that were used to facilitate his transition into the unforgiving light of that delivery room. I later learned that forceps were necessary because of the medications they had given me to induce what they called a ‘twilight sleep’ which dulled the pain of childbirth. They no longer give these medications for several reasons, one being that they slow, thus extend, labor, which is not good for babies. In my case they also caused me to crawl over the rails of the bed because I thought I had to go to the bathroom when I was actually close to delivery. Oh the uproar.
As I looked at this poor little baby, a hand flew up to cover my mouth. The horror I felt was evident on my face because the attendant quickly returned the bassinet to the back, once again setting him apart from the others, and out of view. I got to my room just before the big nurse came roaring and scolding. This time she gave me two little pills. That’s the last thing I remembered before the man-angel lineup.
My husband remained with the others at the foot of my bed. He would glance at me from time to time, but couldn’t hold eye contact. He didn’t come to my side and hold my hand, like in the movies. Instead, he kept his eyes focused expectantly on the lead doctor, who had delivered the baby. Finally, after a silence that seemed to last for days, this doctor cleared his throat and made an announcement: “Mrs. Mathis, your baby is not alright!”
His words bounced around my skull without making any sense. I had counted the baby’s 10 little fingers and 10 little toes, and I’d heard him cry. Well, actually, he croaked. He sounded like a frog. But he breathed and made noise before they whisked him away. He seemed fine to me… in my drug-induced stupor.
As I tried to absorb this information, I looked at my husband again. His pain was palpable, but he couldn’t share that with me. His eyes began to move between the doctor and the door, hoping to be excused. I would eventually comply with a divorce.
The doctor began to explain, very stridently, that the baby had ‘Down Syndrome’ and was “profoundly retarded” because he also had suffered from oxygen deprivation during the long labor and difficult delivery. The doctor neglected to mention the drugs that had also entered the baby’s system. He drilled in his message of doom, saying that my baby had “a hole in his heart that is life-threatening” adding “even if he lives, he is so brain damaged that you will need to set an alarm clock for his feeding schedule, because he won’t know enough to cry when he’s hungry.”
I asked “Is he going to die?” and the doctor replied, “It would be a blessing.” My flame of rebellion died to a flickering ember. If there was nothing that could be done for my baby, then I would not have to figure out what to do. I began to imagine him painlessly slipping away in a deep, peaceful, sleep that would solve this terrible problem for all of us. Besides, this wasn’t the baby I had dreamed of, bought adorable clothes and toys for. I had no idea what to do with this poor little ‘retarded’ baby.
The doctor recommended that we immediately relinquish parental rights, giving the baby a priority spot for institutional care, which was still standard procedure in Arkansas in the 1960s. He would go into Foster Care for six months and then into an institution… for a lifetime. He comforted us with the stated certainty that “this child will never know the difference, and you can go on to have ‘normal’ children.” He then frightened us by saying that it would be the “biggest mistake of your lives” to take the baby home. If we did, and later found that we couldn’t manage, “there would be a five year waiting period for placement.” He also expressed that it would be unfair to raise him with other children, as he would “consume all of your attention and resources.”
The Doctor became very fatherly and, for the first time in my life, I was relieved that someone was telling me what to do. He said the papers would be drawn up for us to sign the next day. It was when they turned their backs to leave, that I began to fully comprehend the enormity of what was occurring. My baby would not be coming home with me. He might die. If he didn’t die, he would be condemned to life in an institution that was located in another state, far away from where we would be living.
They moved me to a private room so that I didn’t disturb others with my sobbing. They would not allow me to hold the baby, saying it was “best not to.”
At around 1:30 AM, I was lying wide-awake in spite of the little white pills, when a man came quietly into my darkened room and pulled a chair up next to my bed. Through swollen eyelids, I recognized him as one of the doctors who had been in the ‘line-up’ the previous morning. He explained that he was doing a temporary residency in Arkansas and would soon be returning to California. He said that he read in my chart that we would also be returning to California, after my husband was discharged. I nodded, “Yes.” He asked if I was aware that there were “services’ available in California, that are not available in Arkansas?” I had no idea what he was talking about. He said that in California, there was now community support and special programs for anyone challenged by a ‘developmental disability’ like Down Syndrome. He said that these services took place in the “least restrictive environment” possible, which rarely included institutional care. He reported that, with this support, most families in California raised their own Down Syndrome babies, and that these children were often wonderful additions to their communities. This young Doctor was the first person to suggest that my baby had been affected by the medications I had been given during labor, and also that heart murmurs like his sometimes repaired spontaneously, or were surgically repaired. He noted that the baby was already beginning to be more responsive as the medications cleared his little body. He felt sure that my son was “not a vegetable” and could have a rich and full life. Finally, he said, “We all deserve an opportunity to try” and encouraged me not to be afraid.
At 2 a.m. we could hear the nurses transporting hungry babies through the halls and past my door to other mothers, for feeding. The young doctor looked at me and asked, “Would you like to feed your baby?” I nodded yes. He stood up and stepped into the hallway, stopping a nurse who was returning with empty arms from a neighboring room. He asked,“Would you please bring Mrs. Mathis her baby?” She looked confused and responded stiffly that “The Doctor has given orders that she is not to have her baby.” The intern stepped aside and looked over at me, asking again, in a softly encouraging voice, “Mrs. Mathis, would you like to feed your baby?” It took me a moment to understand that I was in charge. I straightened my shoulders and said “Yes!” And then, looking directly at the nurse, more strongly, “I would like to feed my baby!” Her cheeks colored and she spun around on the polished floor to retreat. I suddenly realized that medical staff were all aware of something I had forgotten. I had rights. I had a right to information, and to my child. The young doctor seemed entirely comfortable with this conflict, and smiled at me approvingly.
A short time later we could hear soft footsteps coming toward us down the darkened hallway. This sound was accompanied by the sounds of a baby, alternately sucking on his fist and then crying out in frustrated hunger. His tiny fist did not produce what he needed. There was no alarm clock in sight.
It was many years before I considered how this young doctor, who worked in Fort Smith, Arkansas, in October of 1967, must certainly have risked reprimand, perhaps even dismissal, to give me hope and courage. I don’t know his name and have no way of thanking him for lighting that fire in my belly again.
The next day, they brought the papers for us to sign and I asked my husband what he was thinking. He shrugged sadly and looked at the floor, responding, “It’s your decision.”
We took the baby home and were both quickly captivated by our beautiful child. His bruises healed, soft skull rounded, and the hole in his heart closed on its own. He smiled and then laughed out loud with a bubbling chuckle that seemed to start in his toes and then move up through his entire body before erupting from his perfect little mouth. He wiggled and giggled with the joy of being loved. Our baby not only knew when he was hungry, but the formula had to be the perfect temperature or he would howl in protest.
There were still moments of fear and uncertainty, but after returning to California we had the support of family and friends and many dedicated professionals. As Scott thrived, my confidence grew.
We learned together, moving slowly but steadily through each stage of development. For four years, the toilet was our very best friend, until we succeeded in ‘potty training’. It took two years of practice, tying shoelaces every single day until Scott could finally tie them independently. A month later, when I woke up to discover that somehow, during the night, he had forgotten how to tie, a tear rolled down my cheek. Scott looked at it curiously and then reached over and patted my arm. After a moment, he held his foot up, repeating our call to action, “Let’s tie!” He wanted me to show him again. There would be no pity party. It took just a few days for Scott to retrieve that skill, and he never forgot it again.
There have been many mishaps over the years. Some hysterically funny, others terrifying. Each has been worth the rich life Scott has enjoyed… outside of an institution. He has been encouraged to take risks and face challenges. He has experienced both success and failure, just like his sisters who, by the way, truly adore him. He has taught us more about ourselves than we could possibly have known without him.
Scott is now 46 years old. He has a very important job cleaning restrooms and picking up trash at a highway rest stop. He is responsible, funny, sometimes grumpy, loves to play checkers, work jigsaw puzzles, watch movies, bowl, dance, eat hamburgers, and look at pretty girls. He says he would like a wife, but he prefers women who look like Olivia Newton-John in the movie ‘Grease’. This significantly reduces the likelihood of a successful relationship.
Like other adult children, Scott moved out of his mother’s house years ago and continues to live semi-independently with the support of his devoted caregiver and companion, Joyce. We have never once needed to remind him that it was time to eat.
Since Randy became ill, some people have expressed admiration for the way I have managed his disease, saying no one else could have cared for him with the same love, humor, or determination. Of course, someone else might have done it better.
What is true, is that I was rich with the experiences Scott and his friends had been so generous with. I had seen and felt the intact person beneath each ‘disability’, and watched as they reached for recognition and moments of joy. I had learned to stand up and speak for those without a voice. When FTD entered our lives, I already knew that if I crumpled under the weight of sadness and loss, I would miss the laughter and those precious moments of felicity that rise without warning. These were the tools, and the weapons, that I brought with me.
When we first began our search for a diagnosis to explain Randy’s growing confusion and loss of language, we suspected a tumor. We actually hoped for a tumor, because we knew that tumors are often treatable. We also knew that it could be something else. As the technician prepared him for his first MRI, Randy somberly gazed at me with still bright, blue eyes. He struggled to find the words, and with index finger pointing at his head, thumb cocked, he said, “Maybe a tumor, or… that other one … not de… dementia.” There it was again. Anything but that!
I smiled and nodded, bending down to kiss his cheek. I whispered, “We never know just how high we can climb, until a damn mountain blocks our path.” He smiled back. I like to think that he felt reassured because, at that time, he still knew the story of how I had laced up my hiking boots a very long time ago, in October of 1967.
SANDI PARIS has spent her life studying the people around her. She describes herself as a slowly maturing ‘woman of a certain age’, who is prone to profanity without notice. While she considers risk taking to be the primary source of her education, she also has degrees which are somewhat relevant to this endeavor. Writing has been her preferred process since childhood. It has been the creative outlet that produced something she could hold while the rest of life sifted through her fingers. She has threatened for years to ‘get serious and write a book.’ It seems that now is the time.
Featured image: Odilon Redon, “Is There Not an Invisible World?” lithograph with chine appliqué, 1887, The Museum of Modern Art, Manhattan.