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I gave the eulogy at my mother’s funeral a year ago. I remember trying to write it last March—at the same time as I was caring for her and making decisions to help her die comfortably and graciously. I remember feeling overwhelmed and overwrought. The piece grew more out of control the longer I sat doggedly at the computer. How could I sum up such a rich, full life? How could I get across how much she meant to so many people? 

It was my own children who suggested I read from my memoir for the eulogy. “Just tell about growing up with Grandma,” they said. So I did, editing “The Canning Jar,” to about five pages, choosing details to paint the picture of what it was like for me and my six brothers and sisters to live with our dynamic, delightful mother in Marshall, Minnesota in the 1950s.

Today I feel the urgency to write another eulogy—for my younger sister, Patricia, who, at fifty-five years of age, is in the last stages of Alzheimer’s disease. She will die, sooner or later. I’ve learned something from writing my mother’s eulogy: I want to be prepared. I look back at stories about Patty included in my memoir. This is what I have so far:

 

We kept a group lookout from the back window of our sun porch, waiting, watching for Dad to walk back from Weiner Memorial Hospital. Piled on the daybed, the six of us were betting on the sex of the baby.

I bet it’s a girl.” Mary threw her nickel in next to mine on the pot pillow. Mary was ten years old. I was eight.

I have a penny,” three-year-old Danny screeched, throwing it in.

Me too,” Tommy said, carefully dropping his shiny penny in. He was six years old.

As Jim, thirteen, called, “A dime. Chances are, it’s gonna be another boy,” John, twelve, said, “Here comes Dad!”

Mary and I won; a new sister, Patricia, named after our father Patrick, born on October 11, 1953.

As a baby, Patty hardly ever cried. She lay on a blanket and a pink pillow on the living room rug, her little head slowly turning to find our voices, or follow our movements. Because she had fine, soft, blond hair—so different from the rest of us, with our thick, curly, brown and black—she seemed like a tiny, fragile doll. Mary and I changed her diapers, and wrapped her in blankets just as we did our doll babies. We helped Mom with bottles. We danced around her, calling out her name, watching her slowly respond.

But within a few weeks, I overheard Mom talking with Dad, telling him that Patty was not gaining weight, that even though she didn’t want to—she had nursed all of the children—she was going to give up on breast-feeding, because Patty wasn’t interested. But the bottle didn’t seem to be the answer either; it took Patty almost an hour to finish it.

Dad had reassured her, “Honey, she’s probably just a little slower than the others. She’ll be all right. If you’re really concerned, why don’t you give Joe Murphy a call.”

Mom asked Doc Murphy if there was something wrong with Patty’s tongue and upper palette. He said no, that some children didn’t have a strong sucking reflex.

But there were other things. And soon Mom and Dad both worried.

She’s too good, Pat. She doesn’t even cry when she’s soaking wet. At first, I thought, how lucky, what an easy baby. So mild, like when I was carrying her, no kicking or rolling over. She’s still the same; she sleeps all the time. I never thought I’d want a baby to cry.”

Call Joe, Alice,” Dad said.

Mom called Doc again the next day, and asked first about medicine for John, who had the flu, with a very high temperature. Then she brought up Patty. Doc told Mom she and Dad should take her to specialists in the Twin Cities.

Why? Don’t you know what’s wrong?” Mom asked.

Patty’s not gaining weight. Some tests should be run,” Doc said.

It was difficult for a good friend to deliver the diagnosis. Doc—and Mom and Dad—had to strongly suspect Down’s syndrome at birth, what with the distinguishable, physical characteristics: the slanting eyes, flat bridge nose, curved little finger.

Mom and Dad left Patty at Abbott Northwestern Hospital in Minneapolis during Christmas week. For some reason, the tests couldn’t be scheduled at any other time. Our friends, the Flynns, invited us to their home in Canby, a small town about an hour from Marshall, for Christmas dinner that year. Mom seemed grateful for that invitation.

She and Dad returned from Minneapolis on December twenty-sixth, Mom’s forty-fourth birthday, looking tired and sad. Mom’s eyes were swollen red. When I asked her why, she said the cold outside made them sore. Dad asked us all to sit down in the living room, on the good davenport, a clue that something was seriously wrong. The six of us squeezed together. Dad’s regularly strong voice sounded weak. Mom started to cry—which was shocking; we had never seen her cry.

Dad told us Patty was different. She wouldn’t learn like the rest of us, because she had Down syndrome. He said God loved Patty very much, that she was special, very special. God had given her to us to help us love one another more. She was a gift to our family. Blessed with a little angel, we had the opportunity to take care of her.

Is she sick?” Tommy asked.

Does she have to go to the hospital?” Danny asked.

My brothers looked scared, their eyes big and round, reminding me of glass marbles. Patty, looking up from the floor, had tiny, blue steely eyes. Somehow, even that young, I knew Patty wouldn’t be a sister like Mary, but I didn’t know what that really meant: that we wouldn’t share clothes, or secrets, wouldn’t fight over jacks, or canasta melds. I didn’t understand it all, but I knew I’d always take care of Patty.

We helped her grow up, taught her to walk, and talk, and dress herself, tie her shoes, play marbles. She was slow, but eventually learned. Some things she learned really quickly, like how to get up on a chair to unlatch the back door. She never wanted to miss anything. Tommy and Danny pulled her along in their games, forcing her to keep up with them. Mary and I kept track of her, tried to keep her in our room at night, coaxing her to “be a good girl.” Jim and John taught her to say, “Cool, man, cool.”

We defended her. My good friend, Mary Ann, once laughed, “Gee, that Patty is dumb.” I grabbed her arm, and yelled in her face, “You’re stupid. She’s special. God doesn’t send many of them like her.”

Children quickly accept, act naturally. I didn’t know, until I was a mother myself, what a wrenching experience this must have been for my parents. I remembered my mom always taking everything in stride, dealing with problems as they presented themselves. That’s how I remember her dealing with Patty. Years later, however, she told me how utterly devastating it was for her. I never knew anything about the letter that accompanied the test results. Mom said she still kept it in her top dresser drawer. Sent to Doc Murphy, the letter said since this mother had six other normal children to raise, it would be a mistake for her to keep this child at home. She should be placed. The next Sunday morning in Holy Redeemer Church, Mom said she could only wave off Joe Murphy, who moved towards her at the end of Mass. She felt like a zombie. She couldn’t eat, or sleep. Barely able to get herself up in the morning, she continually pulled herself together to take care of the rest of us. She’d start to cry whenever she tried to talk to friends, and was hurt by the curious, insensitive people, who wanted to see what a child with Down syndrome looked like. “Can I see your baby?” they’d ask, when she took Patty for rides in the baby buggy. Her mother wasn’t supportive either. Provoked about the tests, Muzzy pronounced, “I don’t believe it. She’ll be fine. Wait and see.” Muzzy denied, never accepted, Patty’s developmental disability, which must have been very hard for Mom, who needed some advice on how to proceed. It must have been lonely for her.

Dad, too, must have been devastated about Patty’s condition. He sought guidance, of course, from the Church. He asked advice of Monsignor Meagher, director of Catholic Charities in the Twin Cities. Monsignor sided with the medical profession. “Find a home for Patty,” he said.

But Patty already had a home. Remarkably, and happily for us all, Mom and Dad decided to ignore the authorities they normally believed in so profoundly. “When it comes to your kids, you ultimately make the decision,” Mom said, “and with that decision, I went on with life. By that spring, we entertained the bridge group, and proudly placed Patty’s bassinet in the center of the living room.”

Mom and Dad became involved with a newly organized group for parents of children with disabilities, the West Central Association for Retarded Children. Dad wrote an “If I Were An Editor” column for the Marshall Messenger in 1955.

Now that the wall of secrecy and the veil of shame have been erased, I am confident that in the next ten years this problem [Mentally Retarded] will receive the same type of treatment by the American people as they have treated any problem after they have once been exposed to it.

 

Mom and Dad met with parents from five adjacent counties in southwestern Minnesota. Mom described how comforting it was to discuss problems and concerns with other parents. She remembered when Patty was eighteen months old, and still couldn’t walk, a kindly father told her at a group meeting, “Don’t worry. It will come.”

And it did. Patty learned to walk, and then ran from that time on. She was six years old when she fell off the gas tank in the backyard and broke her leg. I found her, and raced for help. “Looks like a fracture,” Mom worried, as she rushed Patty over to the hospital. I scurried alongside. They put Patty’s leg in a cast, and we pulled her home in our red Flyer wagon. Later, she had a walking cast, which had to be replaced almost every week, because she always hobbled through the heel. She was out visiting all her friends in the neighborhood.

In September of that year, 1959, the decision was made where she would go to school. There was no place in Marshall; at that time, the school district didn’t offer programs for children with developmental disabilities. Mom and Dad, inspired by what they read and heard about in the chapter meetings, believed Patty could learn to read and write. They did not want to send her to an institution, where children were placed, and then often forgotten by their families. They didn’t want to lose Patty.

My brother John visited Faribault State Hospital with his high school social studies class. He returned home from that field trip upset. Pale and shaken, he described the treatment he’d witnessed: kids tied in chairs, drooling, or sitting in vomit or feces, kids being beaten up by others. He demanded a promise from Mom and Dad that they would never send Patty there.

They searched for a special school. There weren’t many choices, and most of the programs were in the Twin Cities. They finally decided on a Catholic boarding school in St. Cloud, close to St. John’s University, Jim and John’s college, about a four-hour drive from Marshall. The boys could visit Patty during the week, and on some weekend breaks she could come home with them, and for holidays, and for the summer.

Patty was six years old—the age when normal children go to first grade—when we all took her to the Children’s Home. We kissed her goodbye. Mom cried. No one spoke on the way back home, not one word. That night, missing her, missing her climbing in bed with me, I cried, too.

 

That’s what I had written about Patty in an early part of my memoir. I had also added a few summary paragraphs:

Years of summers, and holidays, and family picnics, and annual meetings followed. Patty never missed calling all her brothers and sisters, and nieces and nephews, on their birthdays, and was in charge of the guest book for family weddings. Patty sang, danced, and played her harmonica whenever we got together. She read us her poetry, offered toasts and orchestrated riddle contests: “What does one light say to another light?” She’d pick winners usually from the newest members of the family, those marrying in, but often she’d choose me, because I’d sing my answer, “You light up my life . . .”

Dad was usually the first person chosen to give his answer in the riddle game. To be chosen first meant you were the big loser. Patty would smile at Dad’s answer, “Close, Daddio. Close.” She joked with him, her Daddio. She poked fun at his big stomach. She called him, “old man,” and then giggled, covering her mouth. Dad would say, “What did you say?” and she’d giggle some more.

 

Towards the end of the memoir I incorporated another story about Patty and my brother Jim and me traveling back to Marshall, set on a legal mission.

 

It’s too loud,” Patty complained from the back seat. Jim didn’t hear her, as we drove past the Marshall city limit sign. When our parents moved us to St. Paul, in 1961, Marshall’s population had been about seven thousand. Now, in 1987, close to twelve thousand people lived in our old hometown.

It’s too cold,” Patty grumbled again, shivering in an exaggerated fashion.

Jim had acted excited as we drew closer to town, putting Beethoven’s “Ninth Symphony” in the tape deck. He had pumped up the volume full blast and cranked open the sunroof of his new car.

And too windy!” Patty shouted. “I just got my hair set, Jim!” She placed her hands over her hair, over her ears.

Jim turned and laughed at her, “We’re announcing ourselves, Patty. We’re back home.”

Some people!” Patty grinned.

Months before, saying they were getting older, Mom and Dad had asked Jim and me if we would become legal guardians for Patty, to advise her, and be her caretakers. We both lived within driving distance of Patty’s Hammer Residences in Wayzata. Jim was a lawyer. I was a teacher. Together, we seemed right for the job. We immediately accepted, assuring them that Patty would always be watched over. The state required the court hearing in Lyon County, the county in which Patty was born. Today was the hearing date.

We decided we had time to look at our old house. “Go for it,” Patty cheered. Jim turned off Highway 19, and sped up Minnesota Street.

Oh, my God, look at the hill?” I gasped. “It’s so flat. It’s so nothing!”

Look at the house,” Jim said. “It’s absolutely miniscule. Goddamn, it looks trashy!”

Watch it, Jim; that’s a bad word,” Patty said.

 “Sorry, Patty, but it looks baad!”

 “I know, Jim.” She poked me in the back. “Jim knows everything, Marge.”

The house shutters hung loose, brown rather than Irish green. The whole house needed paint. The yard, too, needed attention: dandelions growing in the peony bushes, the apple tree dead, no sprouting green, spring grass, no remains of tulips, or smell of lilacs.

We knocked on the door to see if we could get a glimpse of the inside. No one was home. Feeling like trespassers, glancing over our shoulders, we walked into the backyard. I peeked in the garage door window, and my face stared back at me. Because I was feeling like a freckle-faced, pig-tailed girl, the image of the pale, forty-two year old woman with short, colored hair shocked me.

I looked past the reflection to see that the fort was still there. But the swinging ladder and dormer window seemed so small. And the pigeon coops had vanished.

We watched cars drive up Minnesota Street and park in the visitor’s lot of the hospital. “All the fields are gone,” Jim said.

I hid in the fields.” Patty said.

Yes, you did,” I said.

Why did I?”

You thought it was a good hiding spot I guess. I remember the first time. We were babysitting ourselves and you took off before anyone was up.”

Wasn’t Mrs. K there?” she asked.

No, she wasn’t.”

Mrs. Kaczrowski used to baby-sit us, when Mom would go with Dad on business or vacation trips. Mrs. K would talk about us at night, in Polish, on the telephone with her friends. Before she went to sleep, she’d recite her rosary in Polish. She loved to cook, and I think she loved us, because we’d eat all of her kolaches and bismarks.

Mrs. K wasn’t taking care of us anymore. Jim and John were supposed to be in charge. Mom and Dad had gone to the Twin Cities. When Mary and I got up, you weren’t in our room. You weren’t in any beds. Remember you always wanted to sleep with everybody? You’d start out with Mary and me, then you’d go to the boys’ room, then to Mom and Dad’s.” I gestured toward the house, to where the rooms would be. “We didn’t find you in any of your other hiding spots either.”

What were they?”

Closets, the basement pantry, under the piano. In the sun porch.” I indicated the part of the house that stuck out. “Anyway. We couldn’t find you. We yelled for the boys to help, and then we looked outside in the yard, over there at the Van Uden’s farm.” Pointing to the farm, I noticed a modern house where sheep and cows used to graze. “We started knocking on the neighbors’ doors, asking them if they’d seen you. Soon all of Morningside Heights searched.” 

Did everybody know me?” 

Yes.”

Why, Marge?”

Because Jim and John always took you with them, joy-riding through Marshall, in their Woody car. You knew all their girlfriends.”

Ah, hah, Jim,” Patty said, pointing her finger at him. “You’re still cute. Like Paul Newman.”

With his gray hair blowing, and his blue eyes glowing, Jim happy-faced her.

And you played,” I said, “with Tom and Dan and their friends. Mary and I had to baby-sit you and we trucked you around with us everywhere.”  

The neighbors knew you really well,” Jim said.

How come?” 

When you were little, you would just walk into their houses. We would find you hiding under their kitchen tables, scooping out ice cream you lifted from their icebox freezers. A chair in front of the refrigerators always gave you away,” he said.

Did they get mad at me?” Patty squirmed, fidgeting with her glasses.

Everyone loved you, Patty,” I said. “No one ever yelled at you, but we had to clean you up, and the kitchen, and then pick you up, because you always plumped down on the floor, refusing to go. It was a good thing you were a skinny little kid.”

I was remembering that, skinny or not, she was still heavy. She’d throw up her arms like a rag doll, and it was almost impossible to hold onto her. That’s when I would threaten to put a pillow over her head.

C’mon, Marge.” Patty brushed aside my skinny remarks, one hand patting her large stomach, the other pulling off her glasses and rubbing her hand over her face, through her brown, permed hair.

Well, when you took off that morning, we would have given anything for you to have been somewhere, anywhere. We were in a panic; we were almost ready to call Mom and Dad, and then we heard Jamie Marcotte’s call from the cornfield, ‘Found her!’ You were curled up on the floor of the fort, sound asleep.

Pretty smart,” Patty nodded. “I smart, right, Marge?”

Right, Patty.”

Let’s go,” Jim said. “We still have plenty of time. Let’s go see stuff.”

Jim stopped the car at Liberty State Park. We hiked to the river to check out our old haunts. The Redwood flowed high again, threatening its banks. The perfume of apple blossoms mixed with the moldy stink of rotting twigs and leaves. Old favorite elm trees still spread out their limbs for us. We raced, “Beat you back!” to the car and continued on our way, past the Marshall Theater and Post Office, the Lyon County Library, down Main Street and out to the American Legion Field. We got out and wandered around. It was May 18th, too early for the swimming pool to be opened, but the tennis courts were crowded. We didn’t know any of the sweaty players.

Doubling back, we followed the familiar gasoline and greasy frying smell into Mike’s Truck Stop, where we celebrated our return with an early lunch. Our dad used to bring us to Mike’s, where he’d know everybody, but we didn’t know anyone here, either. We were strangers, tourists now, from the big city.

Better get over to the Courthouse.” Jim wiped his face after devouring one of the Best Hamburgers in Town.

I’m scared,” Patty said.

Nothing to it, Patty,” I said. “Just tell the judge what you think.”

The hearing moved quickly. A lawyer presented the legal papers, which Jim and I had already signed, to the judge, who nodded, and signed his name. He, in turn, presented the document to the clerk, who stamped the order. A simple, uncomplicated case. No one even asked Patty to speak.

All rise.” Jim and I stood. The judge swept out of the room, in a hurry, his black robes like stretched wings of a bat.

Congratulations, Patty.” I leaned over and gave her a hug.

Great. It’s all over.” Jim reached for her hand. “Let’s go.”

Patty wouldn’t take his hand. Wouldn’t move.

C’mon, Patty, Peggy and I are your legal guardians. The judge gave permission,” Jim said.

Patty refused to budge; she sat, her heavy body solid on the wood bench. She glowered, her cheeks almost the same color as her pink sweat suit. Behind clear, plastic-rimmed glasses, her eyes stared straight ahead. She held a dry, callused hand over her mouth.

People are waiting. We’ve got to go, Patty,” I said.

She refused to budge.

It had dawned on me by this time that Patty had wanted to talk to the Judge. I was weighing our options when Jean Moon, the social worker, approached. Could she help? I took her aside and asked—if the judge would be so kind—could he please come back in, and ask Patty what she thought of his legal decision.

The bailiff announced his re-entry. “All stand, the Honorable George I. Harrelson again presiding.”

The judge swept in, bat wings flapping. Patty stood. And answered his questions: 

Yes, Judge, I am me.” Smiling broadly, “Patricia Jane Healy. Yes,” nodding quickly, “you got that right, Judge. I am thirty-three years old. Oh, yes, Judge, I want my brother, Jim, to be my guardian. And, Marge, too, she’s my guardian angel, whoops. Just kidding.” And then seriously, with emphasis, “I want her to be my guardian, Judge. Thank you, Judge. I know everything.”

She shot through the swinging, slatted door of the railing, up to the bench to shake his hand, “I’m me, Patty. Thank you, Judge.” Then she happily spun around, large hips swaying, and charged out of the room.

The bailiff and reporter smiled. Judge Harrelson, his robes lying quietly by his side, came over to Jim and me, smiling too. He shook our hands, “You’ve got quite a sister,” he said.

We walked out with Jean Moon. “Patty’s obviously pleased to have you as guardians.” She asked Patty how she was getting along at the Hammer’s Carlson Apartments, if she was eager to move into her own house, if her work at Opportunity Workshop was still satisfying. Patty was enthusiastic—as usual—about everything. She was excited about moving into the community, still plenty busy with church, social, and athletic activities, still enjoyed folding towels at the Radisson Hotel, but employment at McDonald’s, or Wendy’s, remained her ultimate goal.

She could also consider a simple clerical job,” Jean said to Jim and me. “Her reading and writing skills are quite advanced, you know.” She finished, saying she was sorry we had to drive all the way to Marshall to become guardians.

Leaving town, Jim punched Beethoven back on. Majestic melodies pounded through the car. We drove by the old house, for one last look, this time going up the back way. The worn, metal gas tank still stood out in the backyard, purple thistle weeds growing tall around it.

Let’s buy the house, Peg, and keep it up,” Jim said, driving fast out of town. We didn’t hear the siren. The patrolman must have been following us for some time. Patty spied him. “Jim!  Jim!” She pointed out the back window.

Jim got a speeding ticket. Patty grinned. “Some people!”

 

Again in the memoir I had added a summary paragraph:

When our family moved to St. Paul in 1961, Patty moved to Hammer Residences in Wayzata. She worked in the community in various jobs, receiving a twenty-year pin from Opportunity Partners. When Hammer downsized, she moved to a single-family home in Plymouth with three other housemates. Even though Patty—she now prefers the names Patricia, Trisha or Trish—has recently had a total knee replacement, she still doesn’t miss out on much at Queensland, her group home. Whether it is a basketball, softball, or bowling game to play, or watch, a dance to attend, a worship service, or event at her church, a trip out for coffee, an advocacy meeting on behalf of her housemates and herself, a work out at an athletic club, or a cruise around the neighborhood on her three-wheel tandem bike named General Lee, Patty (Trish) glows with a smile and spirit that says, “Life is great!”

 

And now I’m out of the memoir—and remembering these last five years, as Patty has descended gradually into the depths of Alzheimer’s disease. Statistics show that the majority of folks with Down syndrome will develop this awful disease, oftentimes suffering with it younger than fifty, which was Patty’s age when we observed a noticeable decline. I look up on my computer a poem I wrote four years ago in March:

Tangled Webs
Today at the Annual Meeting
the work supervisor reports:
Your sister’s memory loss is more pronounced.
She doesn’t remember in the afternoon
what I went over in the morning.
Patty says, Right, Kathryn.
She looks at me.
Kathryn knows everything, Marge.
Knowing the link
between Down’s and Alzheimer’s
—that 21st chromosome once again
spinning its web of loss—
I begin to quiver.
Patty says, It’s okay. I know
how to clean cords and phones.
I don’t have to remember
anything more. Right, Marge?
Marge knows everything.

Now Patty doesn’t know how to say my name. I’m not sure she knows who I am. She stuffs paper and a telephone handset into her clothes. Because of that, her physique appears bulky, but she’s not big anymore; all her foods are pureed, and her appetite has changed. Her grey hair has grown long and lanky, because haircuts have become difficult; she either pushes the stylist away, or jerks herself away. She has a large bald spot on top of her head—premature balding—but she won’t wear hats anymore. She doesn’t want to wear jackets or gloves either. I buy her a sweatshirt because at least the hood can be thrown over her head when she goes out in the cold.

She used to let me smooth lotion on her hands. Give high fives. Now oftentimes she won’t let me touch her. She just looks down, rubbing her teeth and gums with her index finger. When she does glance up at me, it’s with scared, vacant eyes. But, sometimes, when I visit, she responds to the TV or a DVD and sways her body or marches her feet to a musical rhythm. Sometimes, she will let me get close, even give me a kiss.

But she is unresponsive most of the time. One day she forgets how to walk, holding her head and moaning, and her staff rushes her to the hospital because they think perhaps some vein has exploded in her brain. She returns to her group home in a couple of days, able to walk without a walker. A couple of weeks later, she develops a bad cold and doesn’t seem to remember how to blow her nose. Her staff takes her to the hospital again because they worry she is aspirating. Again, they bring her back home, with orders to wipe her nose on a timed schedule. On weekdays, she goes to Community Involvement Programs, a day care program, where she parks herself on an occasional chair and peeks at others engaged in activities. She steals paper when she can, and stuffs it into her underwear. She is incontinent all of the time.

Alzheimer’s disease forces me to reevaluate my position on developmental disabilities. I am uncertain, caught between Patty’s two conditions. I don’t wish to see her as a symbol of either; she has her own intrinsic value. And in that sense, quality of life is always the question.

 Before Patty suffered from Alzheimer’s, I was saddened to think that, with prenatal screening, folks could readily choose not to give birth to a Down’s child. Knowing the sacrifice of choosing that child—a lifetime commitment—understanding that choice, I still believed in accepting the gift of that child. I believed Down’s individuals were joys for families and communities. Because of their physical characteristics, they beaconed, across all races and cultures, kindness and goodness in the face of an increasing hateful and cruel society. I always thought of Patty as Phoebe presented in Kim Edwards’s, Memory Keeper’s Daughter: happy, funny and wise.

Before Patty suffered from Alzheimer’s, I felt it would be a terrible loss not to have these gentle people in our world, just as I feel it’s a loss to not have more of what I am—a fourth child—in our world. In birth order theory, the fourth child is the peacemaker. With families limiting the number of children—again, a choice I agree with and understand—fewer peacemakers are left to heal our aggressive, chaotic world.

I shared my parent’s point of view—maybe not that Patty was an angel (I’ve grown leery of religious designations), but certainly that she was a special person given to us. An antidote to arrogance in our bright, competitive family. We learned empathy and sympathy from Patty. And love. Love of music and laughter. Love of being and doing—of using up every part of ourselves, physically, mentally, emotionally, of “giving,” in the words of my father, “one hundred percent.”

Now that Alzheimer’s disease is attached to Down syndrome—if it’s a given—I’m not sure what I believe. I hate to see Patty in such a state. I hate to see her suffer.

She’s not herself. I don’t want to write about this shell of a person. There’s been enough loss. I decide that I’ll sift through the writings of my memoir and decide to incorporate the liveliest scenes, to show how much this kind, generous person has meant to me, to my family, and to the many groups of people she touched.

And then I re-think my position and begin the eulogy with Patty in the throes of Alzheimer’s. I start with Mom dying the night of March 13, 2007.

Because it was quite late by the time we got the funeral director out the hospice door, and the out-of-town family members called, and all of Mom’s stuff packed up, I suggested to Patty’s staff that I come out the next morning to tell her in person. Patty had visited Mom the day before at N. C. Little Hospice, where Mom, dying of pulmonary fibrosis, hardly able to breathe, in an unbelievable display of strength and courage, worked to appear normal to Patty, asking the usual questions, ones she’d asked for years—about Queensland’s other residents, her work program, her massage at the Marsh. Patty hugged her and said, “I love you, Mom. Get better.”

The morning after Mom’s death, my older sister Mary and I drove out to Patty’s group home in Plymouth. I wasn’t sure how we’d find Patty. At this point, she wasn’t able to track conversations or to verbalize much at all. But she greeted us at the door, gave us hugs, clearly knowing who we were.

Let’s sit down on the couch, Patty,” I said, “Mary and I have something to tell you.”

Okay, Marge, “ she said, sitting down close to me.

Amazed that she said my name, I put my arm around her. “I have something to tell you,” I said again.

She looked right into my eyes. “I know, Marge. Mom died last night.”

I looked over at the staff person sitting across the room, her eyes, big, her eyebrows raised. She said, “Patty came down to breakfast this morning and told everybody that her mother had died last night. The other residents gave her big hugs and told her how hard it was for them when their parents had died. Patty thanked them. Then they all went on eating cereal.”

That’ll be the opening of the eulogy. I’ll close it with a poem Patty once wrote, which I had saved in a PATTY folder in my file drawer. Patty dedicated this poem to her mom. 

Song For The Kind
Thankful for love peace for joy
Thankful for God thankful for joy I live upon
Eyes bright blue star thankful
Morning star of love light saints of God
Bring all people together in trust
And love peace Lord hear our prayer
We pray thankful Rainbow Club
Faith peace love inside God
Health may the peace and love of God
Thankful people at Holy Name Church
Warm peace love thankful kindness
Truth peace for beautiful love of my family
Thankful bright blue star in love sky
Thankful Irish song thankful Notre Dame
Angels walk to water beautiful warm love song
Thankful beautiful blue bird come light
Of the world thankful for food
Bright red and blue white dove in sky
Bird sing a song love for joy to share
We pray for God love us
Let sing for joy worship love
I feel happyful warm love light
Of good friendship for Christ
Beautiful words fill my mind
As I write this song for the kind
Like the pen of a best good writer
My tongue is ready with beautiful warm love
Patricia J. Rogers







Copyright 2008, Marge Barrett. © This work is protected under the U.S. copyright laws. It may not be reproduced, reprinted, reused, or altered without the expressed written permission of the author.



Marge Barrett received a Masters in Fine Art in Creative Writing from the University of Minnesota. She was the faculty advisor for the art and literary magazine, The Ivory Tower. Currently, she shes at the Loft Literary Center in Minneapolis. Her creative non-fiction has appeared in such works as Community Connections, Gypsy Cab, Minnesota Parent, Sidewalks, River Images; poetry in Fauquier Poetry Journal, Full Circle Twenty, Lake Region Review, 100 Words, Community Connections, River Images, Minnesota Chapter News of the Nature Conservancy, University of Minnesota Creative Writing, Wake, Liminal, Dust and Fire, The Broome Review; an essay in Hot Metal Bridge; a historical booklet, the Story of Hammer 1923-1998.