Introduction

A loving, funny and profoundly moving literary memoir. The redemptive story of two sisters growing up in the shadow of a fatal illness, and a family fighting for a child's life.

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Excerpt

CHAPTER NINE

“My mind tells me to give up, but my heart won’t let me.” – Jennifer Tyler

The great mountain range that isManhattanfloats upside down on the water’s surface, shimmering and dissolving before my gaze. TheHudson Riverglistens in the sun, and glimmers beneath the moon. Great oil tankers and cruise ships maneuver the shipping lanes, dwarfing small pleasure boats and single-man kayaks. Mesmerized as I am by its breathtaking beauty, it is easy for a moment to forget what lies submerged, the cold and treacherous pull of the currents, the whirlpools, obscure shoals and the rocky ledges below. Rogue logs, called deadheads, float perilously shrouded by waves and whitecaps.

Beneath the great city that I so love, beneath the tall condominiums lining the Jersey side of the river, beneath the forests and farms of the Upper Hudson, ground water seeps through the porous rock and fractured aquifers. With steadiness and stealth, it permeates the interconnected cracks and crevices, slowly saturating the seemingly impermeable clay and shale, creating underground rivers which flow unseen into the vast tidal estuary.

As I think back to my family in the year leading up to my twelfth birthday, I wonder that we must have mesmerized those who gazed at us from the outside into thinking that we were negotiating the currents of our life quite well. Perhaps we also mesmerized ourselves. There were sunny mornings and cozy evenings, a house filled with music and laughter as we tapped our toes to Mitch Miller and The Beatles. There were warm hugs, hot milk and oatmeal cookies, buttery popcorn and the Wizard of Oz on our new TV. We had peach cobbler, goodnight kisses, and Sunday afternoon drives in the country. Pam learned to sew and my mother put up strawberry preserves. Yet, while my parents worked to create harmony and joy in our lives, we were each pulled by the hazardous undertow of a hidden dread for the future. Unexpressed, unfathomable angers popped suddenly to the surface like deadheads, hitting us broadside. Fear seeped like groundwater through the rock we thought of as our family.

Death was hiding in plain sight, so we tried to hide from Death, from the full and complete realization of it, from the unbearable anticipation of it. We hid in the warm and lovely parts of our life, the same way we burrowed safely into bed with our parents during thunderstorms.

I know now that the harder you work to conceal a truth, the more that truth becomes self-evident. I know that when you concentrate on the rocks or whirlpools in a river, that is precisely where you’ll end up. Focusing on a fear can lead you straight into the danger you are trying to avoid. Attempting to hide from fear can be even worse, as you negotiate the river blindly, denying your survival instincts, and finally wondering where that rock came from when you wreck your life upon it.

We hide our fear in our need for perfection. We bury it by keeping busy, working overtime at the office, cleaning out the garage, buying stuff we can’t afford. We drown it by overeating, overeacting, drinking, or turning to drugs. We stave it off by starving ourselves. We strike out in anger at those we love, trying to hide our fear.

Pam was in her twenties when she counseled me, “You can’t control life by being afraid of it.” She knew this all too well. She had first learned it the year she was ten.

It has taken me much longer.

*

The child who is dying says, in that case, I’d better have some fun before I go. The child who sits next to the child who is dying asks, how dare I have fun when my sister is dying?

Fun didn’t seem so hard for Pam, as far as I could tell. She was ten years old, in and out of the house with Molly McGregor and June Tranmer, up and down the street on the their bikes, down in the basement giggling, in the backyard running around. Her friends waited for Pam to cough, for her to catch up and get her breath. Then on they all went, having fun.

I played alone with my Barbie doll, working on a project to build a house for her out of a big cardboard box I had dragged home from Woolco. I decorated it with scrap wallpaper and carpet, Formica samples and pieces of wood molding from the showroom at the Summerhayes Lumberyard. Once in a while I spent the night at my friend Jane Wilson’s house, where I got to read contraband like ‘Millie the Model’ comic books, and watch ‘The Saint’ on TV afternine o’clock. After school and on Saturdays, I rode Tornado, with no hands, exulting in the wind on my face. I was twelve, and had secret crushes on Brent Cook and John Van Stalduinen. But I wasn’t really having fun. I was just working at it. I sat on the Wishing Rock and sang when I thought no one, not even Pammy, was around to listen. Someday I’ll wish upon a star and wake up where the clouds are far behind me…

I wondered if Pam sang these words too, when no one, not even me, was around to hear.Somewhere over the rainbow, skies are blue…any dreams that you dare to dream really do come true…

The difference between Pam and me was that she really believed somewhere over the rainbow existed, and I just wanted to.

On top of that, the world was “going to hell in a hand basket” as my mother was fond of saying. For months, ever since the Cuban Missile Crisis, we had been diving under our desks at school whenever the air raid siren went off, practicing drills in case the Russians dropped The Big One. Mrs. Hagey, my seventh grade teacher, said that in the event of a nuclear attack we were to squeeze our eyes shut so we weren’t blinded by the flash. What was the point, I wondered, of saving our sight if we were all going to die anyway? I wanted to see the light if it was the last thing I’d witness on this earth.

I’d heard we’d have twenty minutes from when the siren went off until the bomb hit. I figured that might be just enough time to grab Pam out of her fourth grade classroom, and Gregg out of Grade One, and high tail it down the street home so we could die with Mom in the basement. Or make it to the bomb shelter that Dad kept talking about building. Of course, Pam couldn’t run that fast so I might have to carry her, which would slow me down a bit. Something to consider.

If we had a bomb shelter, of course we’d have to live in it for years because of the radiation. I wondered, though I was afraid to ask my parents, if Pam was to die of CF while we were down there, what would we do with her body? Wrap her in a blanket, and then what?

Of course, whatever happened in the end was all up to President John F. Kennedy, because the decisions he made would affect all of us in theWestern Hemisphere. That’s what my mother said. Lester B. Pearson may have been our Prime Minister, but JFK was our hero.

OnNovember 22nd, 1963 I was down in the basement sick with a cold, wrapped in flannel and slathered up to my eyeballs in Vicks Vapo-Rub watching a western on TV, when Chet Huntley and David Brinkley appeared abruptly on the black and white screen, in the middle of the movie, in the middle of the day.

“The President has been shot.”

I stared at them in disbelief. I got out of my chair and flipped the channel. There was Walter Cronkite, fighting for composure. The President had been shot.

“Mom,” I shouted from the bottom of the stairs, trying to take the steps two at a time on weak knees, my cheeks already wet with tears.

“MOM!”

The blood drained from my mother’s face when I told her, and she quickly turned on the family room TV, moaning a long, low “Oh no…”

She kept us home the rest of the week, “to watch history unfold”. We stayed glued to the television screen. We wept at the sight of Jackie in her blood-stained pink suit. We gasped as Jack Ruby shot Lee Harvey Oswald right in front of our eyes. We sat speechless as the Corse moved downPennsylvania Avenuefollowed by the rider-less horse, and we bit back tears when John-John saluted.

Jackie’s face was staggering and bereft. I saw, for the first time, what grief looked like. I read my own future in her face.

I didn’t know what to be more afraid of then, the end of the world or my sister dying. They both seemed like the same thing to me. Some nights I lay in bed turning it all over in my mind, wishing they’d drop the bomb so we could all die together, rather than have to watch my sister slip away. We could melt like the Wicked Witch of the West in a tangerine-pink mushroom cloud. Gone straight to heaven before we knew it. Pam and me bravely holding hands, instead of me frantic by her bed as she suffocated slowly or coughed to death violently, while I was powerless to do anything, powerless to feel anything but pain as God took her from me.

God controlled people getting assassinated or dying. My mother controlled everything else. She washed, mopped, and spray polished the chaos out of our lives. Pinesol, vinegar, and Lemon Pledge were not merely household cleansers, they were weapons in the battle against helplessness and unarticulated fear. From the expression on my mother’s face, the way she held her tongue, and the ferocity with which she wielded scrub-brush and flannel cloth, I learned that scouring and hand-waxing the floors on bended knee were potent ways to deal with unspoken anxiety or unexpressed rage. Our floors shone yet she lamented, “There’s still dirt there I can’t get at. It gets trapped in the linoleum and hides in the corners I can’t reach.” Like fear. Like grief.

She cleaned the house the day before Mrs. Kathom, the cleaning lady, was due, and rearranged the furniture every other week. She rearranged me too, controlled me, dumped my dresser drawers upside down, turned my whole insides out and made me put them back, all my feelings, my entire wild spectrum of emotions, organized into straight lines and folded into neat piles.

“I want you to put your things away so that your drawers look like Pam’s drawers.”

Not only did I have to aspire to please God and my mother, I also had to live up to my sister’s ideal behavior. I was never as neat, never as smart, and never as composed.

If my mother asked me to do a chore and I complained, she said, “Pammy never behaves like that when I ask her to do something,” to which I argued that she hardly ever asked Pam. When I became frustrated with a homework assignment, my tears were answered with, “Pammy takes her time with things. You lose patience with yourself. You give up too easily.” I didn’t “apply myself” but Pam managed to “keep up and get good marks in spite of being sick and missing so many days of school.” When Pam cried, they asked her what was wrong. When I cried they told me to stop, because I was “getting upset over nothing.” It was a small house and Pam was usually within ear shot, which made these comparisons more humiliating. In my worst moments I asked myself: if Pam is so good and I am so bad, then why doesn’t God give me CF instead? What sense does it make to kill the good person and let the bad one live?

My clearly superior sister had no sympathy for me as I tearfully rearranged my belongings. She perched smugly at the end of her bed as if she were the Deputy Drawer Police, watching me to make sure I followed my mother’s orders.

“That’s not how you’re supposed to fold your undershirts.”

“There’s nothing wrong with the way I’m folding them.”

“You’re supposed to fold them in half down the middle and match the armholes, then fold them in half again the other way.”

I did as I was told.

“You know,” she said, “if you would learn to be neat in the first place instead of just stuffing everything in there, Mom wouldn’t have to dump it all out.”

“Why does Mom care how my drawers look as long as I find everything?”

“The way a person keeps their drawers is a reflection of the way they are inside,” my mother called through the door.

I took that to mean I was a mess. Pam pursed her lips and shot me a snotty look to underscore my mother’s remark.

I stuck out my tongue at her.

“Don’t,” she snapped, pushing me.

“Don’t touch me,” I spit, and grabbed her wrist.

“Leave me alone,” she cried, jabbing at me with her free fist.

I slapped her face. I couldn’t help myself.

For a fleeting second she registered shock, and her eyes filled with tears. I gasped.

She exploded in a white heat, socking me right back, putting the entire force of her iron will and her wiry body behind the blow. In an instant we were all over each other, scuffling and throwing blind punches. I rained blows on her shoulders as she twisted round and sank to the floor, her arms raised over her head. She rolled into a tight ball, shrieking, “Mom, Mom, Heather’s hitting me again!”

“You’re spoiled rotten,” I shouted. “You get away with murder just because you’re sick and people feel sorry for you.”

“That’s not true,” she squeaked. Pam’s face crumpled and turned scarlet. “I can’t help it if I’m sick,” she cried hoarsely, “or if people feel sorry for me. I didn’t ask them to. It’s not my fault.”

“Then whose fault is it?”

She didn’t have the breath to answer. Her lungs crackled as she gasped for air. Her body trembled and she began to cough.

My mother’s feet pounded down the hallway and around the corner. She blew into the room like a gust of Arctic wind.

“Break it up, you two.”

My mother took my sister by the hand and led her out the door.

“Heather, you stay here in your room until I tell you to come out.”

“Why doesn’t she have to stay? It’s not fair.”

I flung myself on my bed and sobbed loudly into my pillow.

My mother’s gentle, muffled voice echoed down the hall, followed by my sister’s cough.

“Are you all right? Did she hurt you?”

I lay in a mangled heap of tear-dampened, half-folded clothes, imagining my mother with her arms around Pam, telling her to never mind me, patting her back, stroking her hair, loving her more than me. “I hate my sister,” I thought. “I hate her stinky mask, and the time her treatments steal from me and Mom. I hate her stupid tent. I hate having to wake myself up at night to make sure she isn’t dead. I hate that she gets away with everything. I hate her, I hate her, I hate her.”

Later, my mother opened the bedroom door and poked her head in.

“Did Pam come back in here?”

“No, I thought she was out there with you.”

My sister had a habit of hiding when she was upset.

“I’m sorry I upset everything,” I sniffed. “Can I help you find her?”

“No thanks. I think you’ve done enough for one day.”

“I’m sorry. I’m sorry.”

“Sorry isn’t good enough. You’ve got to learn to control that temper of yours or one of these days you’ll do some real damage.”

My mother shut the door. I held my hot head in my hands, feeling my blood pulse with shame. Last week I had told Pam I wished she had never come home from the hospital. It wasn’t true, I didn’t mean it, but I was so mad. She cried for days after. I was sorry then. I was sorry all the time. I was sick of being sorry, but sorry was all I had. I knew it wasn’t good enough, that I wasn’t good enough. How could I be good enough if I hated my sister? Except I didn’t hate her, I just hated that next to her, I didn’t feel good enough. Self-pity welled up and spilled through my fingers, salty and wet, while my mother hunted through the house from room to room, opening and shutting doors, calling out Pam’s name.

*

My sister was a virtual skeleton. She had a staph infection raging in her lungs. She was up at the BGH for the second time that spring, and it looked like she might not come home. Dad said they were giving her high doses of antibiotics, but the drugs had caused Pam to lose her appetite and with it, more precious ounces. The nurses shot her up every six hours. My mother told me there was hardly an inch of her arms or legs or her tiny little bottom that wasn't bruised from the needles. One morning, she said, Pam got up to go to the bathroom and collapsed. My sister had not been able to walk since, and had lost all sense of feeling in her limbs. She slept more and more. Awake, she snapped angrily at the nurses.

“You know that’s not like her,” said my mother.

Lately she had refused food altogether, but that was not the worst thing, my mother sobbed. “She keeps insisting that the room be kept dark. Oh, that frightens me. Every time I go in there to open the curtains, she yells at me to close them."

I had read the statistics in the green CF Foundation pamphlets, which bluntly stated that seventy-five percent of children with CF died before the age of six, while the other twenty-five percent faced almost certain death between the ages of six and twelve. Pam’s original prognosis when she was diagnosed in May of 1958, at age four, was six years at the outside. It was now May of 1964. Pam was ten years old. It had been six years.

She had just gotten out of the hospital after spending sixteen days there in April, when they turned around and put her back in. In the few intervening days, crocus and hyacinth sprouted in my mother’s flower beds, and buds burst green on the trees. Just as Pam came home again, one last blizzard struck, taking us all by surprise. Gregg and I bundled Jeffie up and had one last snowball fight in the backyard while Pam watched from the bedroom window.

Now a win ter melancholy clung to her shoulders. She had grown quiet, distant and contemplative.

I acted silly, trying to make her laugh. When that didn’t work I messed up her underwear drawer, hoping to get a rise out of her.

“Leave me alone,” she murmured, closing the drawer, looking at me as if I was the village idiot, and walking away. Frequently, she hid from us. Roaming the house in idle moments, I would stumble upon her squirreled away in a corner, or behind a piece of furniture, sucking her thumb and staring into space.

One Saturday morning she disappeared altogether. No one could find her, and when she didn’t show up for lunch we really began to worry.

"Where on earth is that child?" fumed my mother. "Have you been fighting with her again? You know she's not up to that."

"No Mom."

"Have you looked all around the house?"

"Yes."

“Then she must have gone to Molly’s, or June Tranmer’s. I’ll drive over and see.” Meanwhile, Gregg and I gathered our friends and combed the neighborhood on our bikes. My mother took to the streets in her little beige Hillman. I tossed my bike in the tall grass by the roadside and ran through the Big Woods, calling my sister’s name. Meanwhile, my father came home from the lumberyard and made another sweep of the house.

"I still can't find her!" I cried an hour later, plowing through the side door on the verge of tears.

"It's all right," said my father. “She's here."

My parents sat together at the kitchen table with the tea things spread out in front of them. My mother’s eyes were hope-worn, puffy and red-rimmed behind her glasses.

"She’s asleep in your room. Leave her alone for a bit.”

I slid into a chair at the table. "Where was she?"

"Hiding under theDuncanchesterfield," my father replied.

“What was she doing there?”

My father looked as if he had been taken completely apart and basted back together.

"What's the matter?" I asked.

He hesitated, put down his cup of tea and looked for help from my mother.

She looked back at him and shrugged. "I think she's old enough."

My father sighed deeply and poured himself another cup of strong tea, adding two heaping teaspoons of sugar and a dol­lop of milk. I was suddenly aware of his long fingers, callused and rough from his labors at the lumberyard, quivering as they spilled milk onto the tablecloth.

"Pam was hiding so we wouldn't see her crying."

“What was she crying about?”

My father let go yet another sigh, and swallowed hard. He pulled a large white hanky from his back pocket and wiped his nose side to side with it, as he always did when he was uncertain.

“While the rest of you were out searching, I decided to take another look around here.” He had heard some strange choking sounds coming from the living room, so he tiptoed in and tracked them to the big Duncan Fife sofa, calling my sister’s name. The sound had stopped abruptly.

“I got down on my hands and knees and peered beneath the couch. And there she was.”

“Then what happened?”

“I asked her what was the matter.”

“What did she say?”

“Not a damn word.”

Slowly, carefully, my father inched the heavy, over-stuffed chesterfield away from the wall, got back down on his knees, and crawled in behind. Pammy sat up and stared at him with eyes so red and hollow they looked as if she had been staring into her own grave. These were not the eyes of a ten-year old. Neither was the candor in her voice when she asked him , “Am I going to die, Daddy?”

My father’s eyes glistened and turned pink as he told this. He fluffed his hanky and blew his nose.

"Is she?" I asked, my throat closing against my will.

"Is she what?"

"Going to die? I mean, for sure this time?"

My father flinched. His eyes shifted. He wanted to hide the truth from me, hide it from himself, but he couldn’t.

"She might."

My heart felt suddenly like it had stopped pumping blood, and instead was pushing cold air through my body.

My father shrugged his shoulders, trying to collect himself. "I guess this last time in the hospital sort of scared her. I guess maybe she just finally realized ...."

I fell off the cliff of my father's unfinished sentence. Reading something in a pamphlet, even hearing it said out loud, was not the same as knowing it in your own heart, or as Pam knew now, for the first time, in her soul.

"What did you tell her?"

"I told her that all of us have our time to die, and when it's our time, it's our time. I said it was God's decision. I told her she wouldn't necessarily die from having CF."

"What did she say?"

"She seemed to accept it."

My mother stared silently at the damp wad of Kleenex in her troubled hands.

I asked to be excused, and rushed from the table before anyone could answer. I threw on my ski jacket and ran into the street, my mother's voice echoing after me that it was still cold out and I should wear a hat. "You might get an ear infection…”

"I'll be okay," I yelled over my shoulder, running as fast as I could to the sanctuary of the Big Woods. I climbed to the top of my Lookout Tree.

"Please, God ..." I cried, but my voice died in my throat.

The sun began to set. Salt from my tears stung my cheeks in the damp cold. Pink and violet bled across the shivering sky, becoming a deep, velvety blue.

In bed after lights out, Pam and I made believe that nothing had happened. She left her tent open for awhile before we went to sleep. The bitter-smelling mist poured out, a silvery fog filling the dark room.

"Night night. Don’t let the bugs bite."

"Or the lions lick!"

"Or the turtles tickle!"

We giggled and then lay in weighty silence, each waiting for the other to speak of what had happened.

Finally, I called out to her. “I love you.”

“I love you too.”

“Let’s say our prayers together.”

We repeated our nightly prayer in unison.

“Now I lay me down to sleep, I pray Thee Lord my soul to keep. If I should die before I wake, I pray Thee Lord my soul to take. God Bless Mommy and Daddy…” Pam stopped to inhale deeply from moist, heavy lungs, and coughed sharply. Her voice penetrated the dark.

“It’s getting worse.”

*

Within days she was back in the hospital, and I had written a different prayer.

A Prayer for My Sister, Pamela

Oh, Lord why is thine hand upon her?

And why this ill disease?

That not a man can conquer

Oh, tell me if you please!

She cries because she knows now

Her life is soon at end,

But she cannot understand

Why heaven's round the bend.

It is not what I wilt

But what thou has in store,

But must I live with heartbreak

For now and evermore?

Oh please Lord, do not take her

Unless thou take me first

Or else my heart shall fail me

And belief in thee shall burst!

Amen

Heather Anne Summerhayes

Age 11 April, 1964

I could tell everyone thought this was IT. No one discussed it flat out, but the house was starched with tension, worse than I’d ever known. My parents tried to hide their fear, not realizing how they gave themselves away, alter­nately speaking to us too sharply or hugging us too long and too hard. I asked over and over why Pam was in again so soon. My father patiently explained that Pam never really got over the infection she had in April, and that the antibiotics she was taking at home weren’t doing their job. This left me to wonder what would happen if the hospital antibiotics didn’t do their job either. Why they didn’t send her to Dr. Matthewsw inCleveland, I wondered? The answer I came up with made terrifying sense. They didn’t want her to die so far away from home.

As usual, my parents made the effort to be up at the hospital to do Pammy's treatments at least two and sometimes three times a day. Mrs. Sloane, Pam's fourth grade teacher, took schoolwork up to her, along with get well cards from the class.

We were all like paper cut-outs at home. My father worked, my mother cleaned the house, bought groceries, tended to the boys. It was ritual, it was doing what had to be done, but my parents’ hearts and minds were somewhere else. Although I was well aware that they were dutifully applying their energies where they saw the greatest need, my sense of abandonment was just as keen.

I behaved petulantly with my playmates then stormed off to weep in the high branches of the Lookout Tree in the Big Woods. Returning home, I threw tantrums at my mother's feet when she asked me to set the table.

New, unaccountable fears took root. I refused to go to sleep without my doll, Susie, and I kept my poetry, which I had bound into a small manuscript, right next to me, in case our house burned down in the middle of the night. I was certain the sharp chest pains I felt were small heart attacks. My mother rubbed me with Vick’s VapoRub and said maybe I had a touch of pleurisy, but it was nothing to worry about. I suffered frequent, severe abdominal pains. When I complained of this to my mother, she told me that if I would just stop sitting on the cold ground in the woods, the pains would go away.

“I can take you to see Dr. Cleary if you want,” she offered, but the look on her face told me she did not need another sick child.

I knew that my small discomforts did not compare to Pam’s, and soon realized it was better to spare my parents much whining about them. I should speak up only if it really,reallyhurt, or if there was blood. This was not because my parents were unwilling to suffer with me, but because Pam’s suffering was life and death, which was clearly of greater value. As hard as it was to accept this, I did understand. Soon I learned not to voice my pain at all, if I could help it. In any case, I wanted to be stoic, like my sister. As time went on, I learned to relinquish the right to own my own pain, and suffered the death of my ability to voice it in any articulate way. At times I scorned it, treating it with a kind of contempt, challenging myself to hide it as much as possible.

Many nights throughout Pam’s absence I awoke in the middle of the night, stood up on my bed, and stared out the window, watching the wind sway the dark trees while my mind followed a path downKing George Road, around the bend past the cemetery, and up to the doors of the red brick hospital where my sister slept, and where I was not allowed to go. After a while, I crawled back under the covers to contemplate her empty bed, and think what I would miss most about her.

I would miss her laugh. I loved how we made each other laugh. We didn’t laugh with anyone else the way we laughed with each other. Her laughter was contagious, a jumper cable wired straight to my heart. We laughed at everything, at nothing, our laughter swooped and turned like a roller coaster. We laughed until we were weak in the knees, until we had to hold on to each other, until we fell to the floor and ran out of breath and she coughed so hard we had to stop laughing, but still we couldn’t.

I would miss her snooty airs, yes, even those, and the way her lips puckered and her eyes frosted over when she was disgusted. I would really miss our bedtime chats, and the way she listened when I read my poems. Our games, her mischievous spirit, her serenity, and her tough-mindedness.

Tears slid down my cheeks when I thought of how I would miss the way she forgave me after we fought, putting her tiny hand on my cheek and looking into my eyes as if offering salvation.

I was sorry for the times I’d said I hated her, told her to her face even, because I loved her, I loved her so much it made me wonder, if Pammy died, who would I be without her?

Memories grew more precious as I realized that memories might soon be all I was to have of her, of us together. Through the lonely nights I came to understand the importance of memory, and vowed that from then on, if God let her live, I would make it a point to memorize every single thing I could about Pam, and our life together. Before sleep returned to claim me, I stood up on my bed once more, gazed through the window, and searched the sky to see if God was up there. It was hard to have faith in Him, yet I was learning sometimes faith was all there was, so every night I offered the same prayer.

“Please God, let my Pammy live. Let me have more of her to remember, and let me remember it all.”

Gregg, now a sturdy seven year old with a charming, crooked smile, was missing her too. Even more, he missed our father’s mindfulness, and our mother’s cheer. Though he was otherwise quiet, obedient and unobtrusive, earning him the moniker of ‘a good boy’, he teased Jeff mercilessly, and was punished for acting out at school, where he was struggled to keep up his grades.

While Pam languished in the hospital, my twelfth birthday came and went. I celebrated with forced excitement, feeling as if I’d betrayed her. I breathed in guilt, and breathed out longing.

I longed for Pam to come home, and to be well. I longed for a life free from fear and sorrow. I longed to understand the meaning in all of it, why God made us suffer.

Pam had been gone a month, and already there were mo­ments when I could not remember her face.

Gone Visiting

We used to sit six places

At the table, but now

Their is only five,

You see, Pam got an invitation,

To a home that's up above.

She's just gone visiting

We'll see her soon

And give her all our love again

When we get an invitation from above.

Like humidity on a hot summer’s day, the longer Pam remained hospitalized, the more fear and tension built up in our house. I longed for the storm to break, although I sensed that when it did, there’d be no place to hide.

One night my father came through the side door like thunder, full of deep sighs and ominous rumblings. He never simply entered a room at the best of times, hurling himself through doorways and down corridors. On this night it was as if his limbs shot lightning as he took off his coat and hung it in the closet. He had just come from the hospital.

"How's Pam tonight?" asked my mother.

"I don’t know," he replied tersely.

"What do you mean you don’t know? Didn't you stop in and see her on your way home from work?"

"Yes, I saw her.”

“Well? And?”

My father tried to explain, and as his story poured out, I pictured the whole thing. On his way home from work he had whisked into Pam’s room, behind schedule as usual. He looked at his watch and apologized to her, all half-finished sentences and scattered nervous energy. He swept over and tried to kiss her hello, but my sister jerked her head away from him and waved him off, wordlessly, and rather viciously, with a bony arm.

The thought of it made me smile.

Nonplussed, my father pulled up a chair and sat down. “How has your day been?” he asked.

Silence.

He asked a few more questions.

More silence.

Pam sat on the bed so still, so small and white, that she almost disappeared into the tumble of sheets, her face carved in stone. She stared into the corner farthest away from my father, not so much as batting an eyelash.

“To heck with it then,” my father said finally, his voice thick with hurt. “If that’s the way you’re going to be, I’m going home.”

He walked to the door and lingered a moment, waiting for a response. Pam could have been catatonic for all she did or said. He left then, and brought home thunder.

His story told, he removed his big linen hanky from his pocket, wiped nervously at his nose, and waited for my mother’s reaction.

"Well," she said, fiercely mashing potatoes, "you must have said something to upset her."

I stood riveted, by the table, clenching the silverware. They were going to fight again. They had started fighting with each other more since Pam went in. My father protested, as usual, that he had done nothing wrong.

“Listen,” he said, “Pam just takes after your mother that way. They can both really give you the silent treatment when they want to.”

“You leave my mother out of this. My mother isn’t the problem here.”

“Oh. I guess that means I’m the problem.”

All the while my mother ground the masher furiously into the potatoes while the peas boiled over on the back burner and tears ran off the end of her nose. She had also been up to the hospital at lunchtime, and Pam had refused to speak to her as well.

"Maybe she'll speak to me," I piped up, my mouth dry and afraid.

"You stay out of this. Go get into your pajamas and leave us alone."

"But I haven't finished setting the table…"

"Just go and do as I say," she barked, waving the masher at me. The phone rang. "I'll get that.”

I went to my room, closed my door loudly and then opened it a crack, standing with one ear glued to the conversation that was taking place across the hall.

"She what? When did this happen? ... I'll be right up."

"What is it?" asked my father.

My sister had crawled to the bathroom and locked herself in. She refused to come out. All the nurses, including Miss Greenfield, Pam’s favorite, had been trying to talk her out, to no avail. They had sent for a master key but thought it best if Mom came up and tried talking to Pam again in lieu of dragging her out by force.

My mother took her coat from the closet and raced out the side door. The engine of her little Hillman revved up, the tires squealed and the gravel crunched beneath them as she drove off.

"Geez Murphy!" my father swore loudly, his voice cracking. I changed into my pajamas and crept out to finish setting the table. My father hunkered down in the den, hiding behind his newspaper.

I fed my brothers and got them both into their pajamas. My father tucked the boys in while I tidied the kitchen, wiping the counter three or four times like my mother always did when she was waiting for bad news.

The phone rang.

"Hello," answered my father. "Geez Murphy ... all right." He hung up sharply and went to the closet.

"What are you doing?" I asked in a small voice as he fastened his coat.

"I'm getting ready to go back up to the hospital. Your mother’s not getting anywhere with Pam, so she wants me to try again."

"Take me with you," I begged, "please. Pam will talk to me, I know she will."

"I'm afraid I can't do that, honey. They won't allow you up there."

"But I'm her sister. You already said she wouldn't talk to you. Maybe I'm the only one who can help!"

“Heather, I said no and I meant it. Stop trying to make things worse.”

"But why?" I cried, close to tears and stamping my foot.

"There's your mother's car. I’ve got to go." He kissed me swiftly on the cheek and stepped out into the darkness. I stood shivering and lost in the open doorway, waiting for my mother to come inside.

We sat together on the couch, wringing our hands, waiting for the phone to ring. My father had promised to call if everything was all right.

"Tell me what happened," I demanded.

"Well, after they called and I raced up there, my God, I just flew out of that elevator and down the hall to her room. And when I looked and saw that empty bed ..." My mother choked back tears. "Miss Greenfield was standing at the bathroom door waving me over, so I went and knocked on the door and whispered, 'Pammy, are you in there?' I could just feel my heart pounding and I was trying to catch my breath. She didn't answer me, so I knocked again and called 'Pammy, please, open up...it's Mommy, honey...' and she didn't make a sound, she didn't even cough…"

I saw it all as if I had been there myself, feeling my mother's terror as my own. Pam's silence was as powerful as the grave, the locked door a closed casket on which my mother pound ed in vain.

"So then I said to her, 'I'm going to call your Daddy,' so I called him, and then I went back to the door and pleaded with her, and I said 'Pammy, please don’t do this to me, you're scaring me half to death. Please, just say something. Tell me you're al l right.'"

The door stared back, mute. My mother pulled at it, shook it.

"Oh God, oh God!" she moaned. "What if she can't answer? What if there's something wrong with her? What if she's ..."

My mother rocked herself back and forth, got up and stood at the window, walked over and stared at the phone, came back to the couch and rocked herself again. I slid over and put my arms around her. We waited for my father to call.

"I wish Daddy had let me go with him.”

"Oh sweetheart, there's nothing you could have done.”

I did not cry or speak another word, frightened of upsetting my mother more than she already was.

My mother went to the window again, and the phone.

"Honestly, if she's just pulling some stunt to punish your father and me..."

The phone rang. My mother grabbed it as if it was a life preserver being tossed to her from a passing ship. She listened intently, weeping, collapsing into a kitchen chair, saying "Uh-huh, uh-huh…,” and blowing her nose. I crept to the edge of light that separated the kitchen from the den, and waited in the shadows.

"Okay," she said into the phone, "we'll put the tea kettle on and see you in a while." She hung up. "Your father's coming home.”

He soon arrived, bristling as he searched through the closet for an empty hanger, jerking our coats and jackets sharply back and forth. "I sat on the floor talking to her through that damn door for over an hour,” he growled. "All she would say was that she wants it to be over. That's all she said ... she just wants it to be over."

"She just wants what to be over?"

My father threw his coat on a wire hanger he had bent yanking it from the closet, and glanced around the room, as if the words he needed were hiding from him in the bookcase or behind the toss pillows on the couch.

"Listen," he said, "I think she's just got fed up with everything. She's been cooped up there for weeks and she's not getting any better, and everyone's prodding and poking at her and telling her what to eat and when to sleep…she can't see any of her friends or Heather or the boys…she doesn’t have any control, and it’s making her angry..."

Frantic, my mother’s eyes flickered about my father’s face as he stood there, frustrated as all get out.

“For heaven’s sake Doug, stop beating around the bush and just spit it out!”

My father looked at my mother like he was trying to figure out what she meant, when I knew he knew exactly what she meant. He hung up his coat and sighed from the bottom of his shoes.

“I’m just trying to protect you, Donna …”

“I don’t need protection!” my mother shouted. “Just tell me what she said.”

He whispered something that made my mother look as if she had been split down the middle with an axe. Her voice came out soft and full of tears.

"What did you say to her after that?"

"I said it was up to her. I told her we would all help her live but we won't stand by and watch her give up and die without a fight. I said she could think that over and call us when she makes up her mind."

"And then you left her there? Oh Doug, oh Doug ... how could you?!"

"What else was I supposed to say? What did you want me to do - break down the door and drag her out of there kicking and screaming? Miss Greenfield is right. Pam has to make this choice for herself, Donna. It’s the one thing we can't do for her."

My father swallowed his tears.

I stole quietly to the kitchen and put the tea kettle on, got the milk out of the fridge, gathered cups and saucers from the cup­board. I made the tea and brought it to the table. We sat down, speechless and spent. When the phone rang, we all jumped.

"Hello," said my father.

"Daddy?" It was Pam. She was crying. I could hear her through the receiver. "I'm sorry, Daddy."

"It's all right, honey, it's all right."

"Miss Greenfield had a talk with me after you left,” Pam sobbed, “and I'm calling to apologize for the way I acted. Will you and Mommy come and visit me tomorrow?"

"Of course we will.”

"Let me speak to her," said my mother, taking the phone. "Pammy?"

There was no need for me to hide now, for I had become invisible. I slipped off through the dark hallway and climbed up onto my sister's bed, giving myself over to a night of tears and bad dreams.

Pam had survived the measles and chickenpox. She had survived several bouts of staph and pneumonia. Each time, we had counted it as a miracle. How many miracles, I asked myself, was one family allowed?

In the days that followed, I called to God from the Wishing Rock, but heard no answer. I looked for Him vainly in the woods. First Baptist was bereft of Him. The singing choir sounded hollow, and the church was full of coughing, whispering and dead air. Even Reverend Squires seemed a caricature of himself.

My parents didn’t know how to help me any more than they knew how to help themselves. They seemed old to me, but in fact they were quite young. My mother was barely thirty. They were still learning how to cope with their own feelings, and with facts about the disease that remained vague and uncertain. They were good at sharing those basic facts with me, but there was still much that frightened me about Pam’s condition and prognosis, especially when my imagination got going. It was always worse when Pam was in the hospital, and my callow instincts were alarmed by my parent’s deep sighs, their anxious eyes and tight-lipped smiles.

Children react to the worst thing they can imagine. The worst thing I could imagine in my twelve-year-old mind was Pam’s death, in a violent, painful, bloody coughing spell, with me not there to help save her life, or at least to hold her hand.

There was no place to put my imaginings. I carried them around in the dark inside of me, where they waited for a time and a place to leap out and unleash their holy terror. With pubescent hormones beginning to rage, I was already in a perpetual bad mood. Added to this was the constant pressure of my parents’ compelling need for me to get things “right”, to control my thoughts and actions and refrain from causing further upset. Caught each day between crisis, fear and obligation, I was set up to react to anything as if it was the worst thing, to over-react, and I often did.

One day, I went over the edge.

"Where do you think you're going, young lady?" My mother's tone of voice was sharp. I ignored her.

"Heather Anne!" She used my middle name only when she was angry.

"Jane Wilson invited me over to watch cartoons.”

"You’re not going anywhere until you get that room of yours cleaned up. It's a pig sty. I can't walk in there anymore."

"Then don’t.”

"Now you listen here, we’re not having another fight over this. You've got to learn to settle down and do as you're told."

All the time, it seemed, I was being told. To be quiet, to shut up and to listen to what I was being told, instructions on how to be quiet, how do a task and do it right the first time. “I do listen!” I wanted to protest, to the birds and the wind, to the song of the poplar trees, and to my own heart beating in the dark of night.

“Did you hear me? Get downstairs and clean your room!”

"I don’t feel like it."

"Well, that's too bad because you're doing it anyway!" She grabbed my arm and hauled me down the basement stairs. "You begged us for your own room and now I expect you to keep it clean!"

Dad had answered my anxious pleas, and built a room for me in our half-finished basement. My mother had bought me new furniture, and hung the old curtains from the den. It was not the cozy refuge I had anticipated, however. In daylight hours, as I had discovered, my room failed to offer the privacy it warranted. My mother entered uninvited, scouting my room from time to time like an army sergeant seeking contraband. At night it felt like a bomb shelter, lonely, dark, and damp. Hidden away from the rest of the family, helplessly submerged in nightmares, I woke and no one heard me cry out. I stared wide-eyed into the shadows, heart pounding, physical pangs of guilt like knives in my chest, knowing that when, or if, Pam returned from the hospital, I would no longer be able to keep watch over her and listen to her breathe.

On the other side of my wall lurked the compressor that ran both Pam and Jeff's mist tents. It shattered sleep, vibrating my bed, reverberat­ing through the cavernous black furnace room, echoing off the cement walls and floor, droning like an airplane ready for takeoff. Woken again and again through the night, I lay alone in the dark, wondering if my independence was worth it.

"Just look at this mess!" my mother barked, shoving me through the door and into the room. "This room has to sparkle before you go anywhere."

"Cartoons will be over before I'm done. Jane is expecting me. Why can't I clean up when I get back?"

"Because by the time you get back it will be time to help me unload the groceries and do Jeff's treatment. Now do as I say and get busy."

My stomach churned with sudden rage. A piercing, violent disembodied shriek found its way out of my mouth. I threw myself onto the bed as if possessed, pounding and screaming. My mother strode toward me on her basketball legs and yanked me to my feet. I shoved her to the floor and hurled myself around the room, screeching, crying, bouncing off the beige pressed-wood paneled walls. With one mad swipe I sent everything crashing off my dresser. My mother lunged forward and grabbed me by the shoulders.

"Let go of me!" I shouted, "I hate you!"

I kicked and punched blindly while my mother lurched back­ward. I clenched my fists and ran at her. She jumped out of my way. I careened toward the wall. My right fist smashed hard against the pressed wood paneling. I sank to the floor, my body shuddering with deep sobs.

"Oh my God," gasped my mother, "are you alright?" She stretched her arms out toward me.

"LEAVE ME ALONE!" I screamed. "I HATE YOU! I hate you. I hate you..."

The blood drained from my mother's face. She turned slowly and left the room.

"I hate you, I hate you," I incanted, until I was out of breath. Weeping, I sat up and surveyed the damage. I had thrown tantrums before, but never this bad. I was scared and shaken, yet for a moment, the sense of my own power had been exhilarating.

I picked up the lamp, straightened the shade, and placed it back on the dresser. The curtains drooped where I had yanked them and bent the curtain rod. My arms trembled as I pushed them aside.

I crept upstairs, slipped quietly to the closet where my mother kept the cleaning supplies, pulled a dust rag from the paper bag full of old cloths, and tucked a can of spray polish under my arm. Gregg appeared in the hallway door, staring at me as if I was a complete stranger. I turned and ran back to my desecrated sanctuary, away from the anguish and awe in my little brother’s eyes, away from the sound of my mother sobbing in the kitchen.

Downstairs, I dumped out my drawers and reorganized them so they looked like Pam's drawers, underwear and t-shirts neatly folded. I made my bed with crisp hospital corners the way my mother had taught me for my Girl Guide Housekeeping Badge. I hunted down an old cardboard shoebox from the other side of the basement, and filled it with my hair curlers.

As I tried to write 'Curlers' on the side with a magic marker, my right hand would not work. I shook it. It flopped awkwardly, sending shards of pain up my arm. Once more I tried to write, putting the magic marker between my thumb and index finger. Painstak­ingly, I scrawled the label. Using only my left hand, it took me two hours to dust, vacuum, and put my room in order.

“I’m finished,” I informed my mother tersely.

"I'm just giving Jeff his physio. You wait for me downstairs until I'm done."

Though he was not sick the way Pam was, the doctors still wanted Jeff to have the standard three treatments a day. It was all my mother did anymore – give Pam and Jeff their treatments, strip their beds, wash their sheets, and set up their tents. I took these ministrations so for granted, I never considered how burdened she might have felt.

I slunk back to my room. My hand was a throbbing, swollen purple mass. I sighed deeply and stared out the win­dow at the careless poplar trees. Jeff coughed upstairs. The treatment was over.

My mother's footsteps were sharp and sure as she descended to the basement, to my room, my neat hell. I stood al­most at attention, determined not to cry. Her gaze fell on the dresser, the bed, the night table. She lifted the bed skirt and checked under­neath for dust balls. She looked me in the eye and said she didn’t want to see anything like this happen again. She was controlled, remote.

"I'm sorry," I mumbled, close to tears.

"I know," she replied curtly, "I'm sorry too." She walked to the door, then stopped and turned back toward me. “Heather, I don’t know what to do to make you happy.” The ache in her voice broke the dam in my heart. My eyes flooded, and spilled as she left the room.

Denying the pain in my hand, or stealing aspirin to ease it, I managed to hide the injury from my mother for almost three days. When she discovered it, she ran me up to B.G.H. I had X-rays in Emergency while my sister lay in her bed up on the ninth floor.

“How did this happen?” asked the doctor.

“I fell out of a tree.”

The doctor looked at my mother doubtfully. My mother stared at the floor.

They put me in a cast up to my elbow.

"Pammy will want to know how I broke my hand," I mumbled in the car on the way home.

"Why don’t you just tell her what you told the doctor?"

I turned my face to the window, and wept with shame.

Within the next few days, we got our miracle. Dr. Matthews discovered a new antibiotic inEnglandand arranged to have it sent to Dr. Cleary. Pam’s subsequent retreat from death’s door was swift.

Though I was not allowed to visit her, I knew this was true when I saw her picture in the newspaper. It was a relief to see her, smiling wanly, skinny arms and legs hanging out from her baby dolls and her hair flat from weeks in bed. The photo had been taken at the Brantford CF Chapters' General Meeting up at the hospital. 'BRANTFORD'S LISA' the caption read. Pam had been chosen as the poster child for the CF Foundation.

More publicity. They were going to put Pam in ads and on posters like Timmy for Crippled Children’s and the March of Dimes. I didn’t know what to make of this. One minute my sister was at death’s door and the next she was the centerpiece of a major ad campaign, sporting a fake name while plans were being made to buy her a new dress and have her hair permed. Confusion gave way to jealousy, all mixed up with plain old heartache and longing to see her.

"All right," my father relented, "hop in the car and I'll take you up with me."

"See that window up there?" he said as we parked the car across the street from the hospital. "That's where Pammy is."

I scrambled out and hopped up and down with excitement, ready to race across the road and through the hospital doors.

"Now just hold your horses there," said my father. "You can't go inside and see her, the hospital won't let you. I just brought you here so you can wave up at her. She’s expecting you, so she’s waiting up there in the window. Go on, wave."

I could not believe that my father would make such a fool of me, or that I could have been so stupid. I squeezed my mouth hard to fight back tears and waved duti fully up at the dark window, not willing to admit that I couldn’t see anyone waving back.

"See her?" smiled my father, waving and pointing, “there she is."

"I see her." I lied to please him.

"You wait here in the car now, and I'll just run up for a minute and say hi. I won't be long."

We acted out this charade a couple of times. No matter how many tears I shed, my father could not be convinced to take me any further than the parking lot. Hospital rules, he incanted sternly.

He may have been able to say no to me, but he couldn’t say no to Pam. She demanded to see me too, so my father, caught between the two of us, devised a plan.

On the appointed day, when we arrived at the hospital, my father took me for a snack in the coffee shop. After a few minutes, I excused myself and went down the hall to the ladies room, which was right next to the stairwell. Dad casually paid the bill and rode the elevator to Pam’s ward on the ninth floor while I counted slowly, “one,Mississippi, two,Mississippi,” all the way to a hundred. When I was done, I poked my head out of the ladies’ room door to make sure was sure no one was watching, then raced nine flights up the stairwell and flattened myself into a corner of the landing, where I waited panting and breathless for my father to come and get me. The door swept open and my heart jumped.

"Quick, quick," he whispered, "run straight across the hall!"

I dashed blindly into my sister's room. The cloying disinfectant smell burned my nostrils and choked me. Pam was perched high on her hospital bed, giggling, her hands bunched excitedly over her mouth.

I reached up and threw my arms around her neck, dizzy with joy, breathing hard against the tears that wanted to come.

"Don’t cry," she said, "I'm all right."

"I know," I replied. "Anyway, I'm no cry baby." I wiped my nose with the back of my hand and stared up at her.

"If anyone comes," she said, "you can hide in that cup­board," indicating a pair of doors below the sink behind me.

"How have you been?"

Pam laughed and rolled her eyes. "I had kind of a rough time there for awhile, but I'm okay now. Dr. Cleary said I should be home in a few days."

"I saw your picture in the paper."

"Oh," she groaned, "I'm so embarrassed about that. Don’t I look awful? Nobody warned me. Mom tried to comb my hair but it kept sticking up.” She giggled again.

I told her I was writing another play to raise money for CF.”

“It’s about Henry the Eighth and all his wives, but I’m waiting to do it until You get home.”

We discussed the fact that Dad had built me a room in the basement, and how weird it would be not to sleep together anymore.

“I think it will be good for you not to have the tent bother you,” Pam said. “What happened to your arm?”

I glanced sheepishly at Dad and told Pam I fell out of a tree, the lie sour on my tongue. She offered to sign my cast.

Pam showed me a giant scrapbook. She had been keeping busy gluing in get-well cards from Summerhayes Lumber, First Baptist Church, the John Noble Home where Grandma Birdsell worked, from school, and even from people she didn’t know who’d read about her in the paper. News of Pam’s plight had also been broadcast on the radio since the “Lisa” picture appeared in the Expositor, and the radio station sent her a Kookie Doll.

I perused the five-inch thick scrapbook and ad­mired the beautiful doll, taking it all as evidence of how much more my sister was loved than me.

"Quick," my father blurted, “into the cupboard."

I shut the cupboard door on myself and held my breath.

"I see you've got visitors," the nurse said.

"Just one," Pam lied, "just my Dad."

"Yes, I can see that. Let's take your temp."

I waited in the dark cupboard, tensing my muscles to keep still.

"Mmm-hmm, okay, that's normal. Have a good visit with your dad. Your sister can come out now, but then she has to go."

Dad opened the cupboard and the three of us convulsed in laughter.

"It's a good thing you're the actress in the family," Pam giggled, "'cause I'm terrible at it."

My father lifted me up on the bed. Pam was so fragile I was suddenly afraid to touch her. I reproached myself for the envy I had felt. The skin around her eyes was puffy and dark. Red and purple track marks ran in bright, neat lines up and down her arms and thighs. She covered her legs self-consciously.

"Looks like we'll have to stuff you with butter tarts when you get home.”

"Ya," she smiled. “Hospital food is yucky."

"Okay girls,” my father said. “Time to go.”

"See you in about two weeks," I chirped, squeezing Pam's hand.

"Before that if I can help it," she replied. She reached out her arms and pulled me close, kissing me on the cheek. I held her, trying once more not to cry.

"Dad," I asked as we walk down the hall to the elevator, "has Pammy's room always been on that side of the building?"

"Yes. Why do you ask?"

"Because her room doesn't face the parking lot. Just who have I been waving at?"

By the time Pam came home she had been gone forty-eight days. I was hyped up, live as a snapped wire. It was the end of June and school had just let out for the summer. I had passed into Grade Eight, although I had to write my finals in the cast, and lost marks for poor penman­ship.

Pam passed as well. Although she missed fifty-three and a half days of school, her marks were excellent. Mrs. Sloane, Pam's teacher, gave me her report card to bring home. It was full of comments like 'Pam is a lovelychild' and'How I will miss that sunny smile next year! Pam is a credit and pride to any classroom.' My report card bore no such remarks. None of this would be lost on my father.

Jane Wilson waited with me for Pam on our front porch. I stared impatiently up the street while Jane played with her dog Tammy and talked on and on about how great it would be to be in Grade Eight next year and maybe get to wear nylons.

I didn’t care just then about nylons, I only cared that Pammy was coming home. We would make tea and celebrate.

My mother's little beige Hillman came into view. Instantly my heart began to pound and my breath came short and sharp. I stood up as the car turned into the driveway. Pam smiled, waving at me from the front seat. The backseat was loaded with ‘get well’ presents. The report cards went soft in my sweaty palm. My mother got out of the car, but I did not move to greet her. Instead I stared at my sister, who was not only sweet, brave and smart, but alive, a wonder to all, no less than a miracle.

Jane’s dog jumped up and barked as my mother made her way around to the passenger side of the car. Pam clambered at the window while I stood paralyzed. My mother put her hand on the car door, turned the handle, and stared at me with hard eyes.

"Well," she said, "did you pass?"

I thought she meant she’d expected me to fail.

Suddenly the whole year caught up with me. Unkempt dresser drawers dumped on the floor, Jackie Kennedy in her bloody pink suit and black veil, hiding places and Lookout trees, dark nights and lonely hours, air raid drills and locked bathrooms, nightmares and empty beds, publicity campaigns and living miracles. My sister’s report card. “That sunny smile.”

Tears flowed likeNiagara Falls, so sudden and swift I could hardly see. The report cards soared like yellow birds into the sky where I had flung them. I watched as if I was standing outside myself. Everyone was staring at me, moving in slow motion, as if we were all under water. An anguished, wailing sound brought me back into my body, and I was shocked to hear my own voice, so loud that the neighbors peeked from behind their curtains to see what the commotion was.

My mother sent Jane home and banished me downstairs to my room, “to reflect on my behavior”. The sound of teacups clinking on saucers upstairs, the padding of footsteps back and forth across the floor, the soft click of the refrigerator door opening and closing, all hurt me. My sister’s cough echoed eerie and ragged down through the heating duct from the kitchen, her voice sobbing.

“It’s all my fault for being so sick.”

"Nonsense," my mother said. "Heather's just mad because you got all those presents. She knows better than to behave like that."

I didn’t understand why behavior was more important than feelings.We need to set a good example for the other CF parents, my Dad had said. What did that have to do with me, and the way I felt? I’m just a kid,I thought. Why do I have to worry about setting an example? Can’t they see how lonely I am? How scared? How helpless?

I knew I was letting my parents down. My behavior dismayed me as much as it did them, but it felt beyond my control.

Later, my mother called down the stairs, telling me to come up and set the table for dinner.

“You’ve had enough laying around down there and feeling sorry for yourself.”

I dragged myself upstairs, shrinking in disgrace as I folded paper napkins and counted out the stainless silver, while my mother muttered in the background, pushing pots around the stove.

“I wish I had the luxury to mope in my room. I can either fall apart or keep going, you know. I don’t have time to sit around and chew over every little thing. I’m too busy just putting one foot in front of the other.”

My mother had no time for nonsense, no time for playing games, no time for histrionics or for anything except cooking and cleaning, doing another load of laundry, going out to view abbreviated excerpt only...

Discussion Questions

1. Do you agree with the way in which Donna and Doug handled the diagnosis with regards to their daughters? Would you have been that honest? If so, why, and if not, why not?
2. What were the family’s strengths and weaknesses? How do you see them as compared to your own?
3. Pam said that whenever a friend died, she thought of the part of them that she admired most, and endeavoured to take that quality into her own persona, to give her strength, and give that person a way of living on through her. What did you admire most about Pam , Heather, and the rest of the family members? What would you take from them, or their story, to use in your own life?
4. Heather did a lot of acting out during her formative years. She was in a lot of pain that she wasn’t able to articulate artfully. Is there a young (or older) person in your life who might not be able to adequately express their fear or anger? What would you do to help such a person?
5. The extended family members were at the least unsupportive and at the worst hurtful. Do you understand their position and sympathise with their predicament, or do you feel they could have played a more positive role?
6. Heather had tremendous issues of self-worth both connected to and independant of her sister. At one point, she went to school in a wig and overly-done makeup. What were your issues of self-worth as a teenager, and what did they stem from? How did you overcome them – or have you?
7. Pam developed a philosophy of life beyond her years. Do you think she learned this, or was this outlook part of her nature? What did her family have to do with her success at battling her disease, and in turn, how was she able to help her family deal with it?
8. How much do you think Pam’s illness had to do with the demise of Heather’s marriage?
9. What do you think is the difference between giving up and surrender?
10. Has reading this story changed your perspective on your life or your family in an way? If so, how?

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