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Although the author and publisher have made every effort to ensure that the information in this book was correct at press time, the author and publisher do not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors, omissions, and information, whether such errors, omissions, and information result from lack of due diligence to legal requirements, negligence, accident, or any other cause. Some names in this story have been changed to respect individual privacy.

I dedicate this book to the two most important men in my life: My husband Vic, for being my most faithful advocate and my greatest love; and to my brother Paul, for accompanying me on this journey and continually showing me how to be a better person.

Sibling relationships naturally take on a variety of unique forms shaped by a shared history, family dynamics, and, often, where life takes us as we move beyond our childhood family home. The role can be much more complicated when that relationship involves a sibling with special needs. In that instance, as described in this beautiful, honest, and touching book, it can add many layers of responsibility and obligation. However, it can also inspire a bond that isn’t merely of convenience or necessity, but one of deep love.

There is another characteristic, which I have witnessed in person for over a quarter of a century of knowing Bernice and Paul, and that is mutual respect. Despite what many would view as challenges and frustrations when having a sibling with special needs, Paul and Bernice are very respectful of each other. They demonstrate patience and love toward one another and share a unique and wonderful sense of humour as well.

They understand what they each bring to the relationship and that being siblings is just the foundation. It’s an obligation, in the strongest and best sense of the word, that recognizes the power of being born into the same family, and is a quiet but mutual acceptance of the terms in memory of their loving parents.

I’ve had the great pleasure of knowing Bernice for over thirty years; in the time that she has been a part of our family, so has Paul. Or maybe I should reverse that: over the decades that Bernice has welcomed me into her heart and family, she has expanded my world by including Paul. He is a man of strength, determination, courage, perseverance, and independence; as I’ve mentioned, he has a delightful sense of humour and profound love for his extended family. To my children, he is Uncle Paul.

I could use all the above adjectives to also describe Bernice. She’s been a strong role model in my life, and a silent guide on the importance of the choices we make and the people we choose to call family. To our benefit, and this includes my two sisters Lorraine and Jessica, we’re grateful that she chose to love our father, Victor.

When Bernice started to pursue her passion for writing, it was clear from the beginning it wasn’t as simple as starting a new hobby; it was the natural evolution of her desire to tell a story that she had been carrying in her heart her entire life. It was years of careful recall, reliving past events, writing, rewriting, and editing with her wonderful tribe of writer friends that paved the path toward publishing and sharing this story.

This book is not only Bernice’s and Paul’s story; it’s the story of many families, which I know is one of the reasons she chose to write this book. It’s for all siblings caring for and about their own brother or sister with special needs; and it’s for those learning to become protective advocates in order to navigate complex legal, health, and social systems to ensure that bias or vulnerability does not harm someone who cannot always use their own voice.

This book also addresses, with authenticity, the heavy weight that can rest on individuals in these situations and the impact on their lives and family relationships. There is no handbook that can make this journey easier, but this book can be a guidepost to let you know that you aren’t alone, that what you feel is a natural response, and to acknowledge that this community needs to come together to support each other, to advocate, and to educate.

Bernice, you have contributed much to all of us and, together, we thank you.

Lying on the table, under the white felt blanket, my father was foremost on my mind. Today would have been his birthday; the first one since he passed. The last year and a half had taken its toll on my body, with a cancer diagnosis, several ensuing surgeries, and months of chemotherapy, not to mention the death of my father. In preparing for this post-cancer healing session, it had crossed my mind as to whether it was wise to book a session on this day, the date of his birth.

The Reiki practitioner stood over me to begin, so I closed my eyes. Enjoying the quiet peace of being cared for, I drifted inward with my thoughts.

My father’s Dutch accent penetrated my mind instantly. His gravelly voice was so clear it startled me.

“Bernice, you have to write the book,” he said. “You have to tell our story.”

Hot tears welled immediately and rolled down the side of my face, wetting my hair. “No, Dad, I can’t. I am too afraid. I can’t write. I don’t know how to write a book.”

“You have to write the book, you must tell the story. People need to hear it.”

As I kept insisting No, fear flooded through me like a foaming angry river that seemed to bounce around my insides, like the rocks on its bed. I knew what he meant. He meant write the story of Paul and our family, a thought that had nudged me every so often for many years now, but one that I had pushed away.

Leaving that Reiki session after having been completely immersed in my fear, I made the decision to write. I reflected on how alone I had felt growing up and how I hid my brother Paul. I wanted to reach out to others who may be struggling in the same way. Reading a story such as this would have helped me feel not so isolated, and better able to navigate my feelings surrounding the whole situation.

Sometime before that, and a while after my father had passed, I found them. Hidden in a tattered shoebox amongst black and white photos, a marriage certificate, newspaper clippings, baptismal papers, death notices, and various other documents—I had found a stuffed 9.5 x 6.5-inch manila envelope on which my mother had written:

Opening the envelope and reaching inside, a collection of loose, yellowed pages in a variety of sizes appeared. Some were lined, others plain. Some were torn from a spiral-bound notepad, while others had a straight edge that clearly came from a gum-bound pad. Each page had a date penned in the upper right-hand corner, ranging from October 1958 to September 1966: the years my siblings and I were young.

All were written in Dutch in my mother’s meticulous hand. Leafing through the pages and scanning the contents, I recognized an occasional word, but most were as foreign as the language. I could speak conversational Dutch, but I had never learned to read it. Carefully, I tucked the pages back into the envelope, making a mental note to find a translator.

It took some time, but I finally received the English copies of my mother’s letters in December 2011, shortly after I started writing this book. They seemed like the perfect addition to Paulie and Me.

I also wish to thank my writing group members; you ladies taught me how to write by the examples of your own writing, through your love of language, and with the help of your keen eyes. I was motivated to reach higher.

The white pines of Georgian Bay are best recognized as windswept silhouettes leaning away from the bay’s prevailing northwesterly winds. For years artists have been drawn into the symbol of their strength and enamoured by their beauty.

It’s one particularly poignant painting by Alfred Joseph Casson of The Group of Seven, titled The White Pine, that speaks to me. The artist depicts two white pines, one large and one smaller, alone on an outcrop of rock, their odd shapes lean toward the open water while their branches bend away from the fierce winds of Georgian Bay. The larger of the two appears to protect the smaller in a symbol of unity. They remain together, deeply rooted beneath the rock, utilizing what little soil the land has to offer.

So it is that my brother Paul and I are standing together in this life, our trunks fixed and strong as we lean into the wind and bend away from our adversities. Connected to one another like A.J. Casson’s white pines, I care for Paul as though he were my own child. Even before I was born, he was there waiting for me, trusting I would help him navigate the journey of his life.

Many times while braving the winds of our lives together, I have asked why as I struggled under the burden of my brother’s special needs. Still, I see Paul as the larger of the two white pines and myself as the smaller.

The Georgian Bay white pines—in response to the Bay’s northwest wind—are possessed with a strange beauty, attracting paintbrushes of artists for centuries; and so it is that my own artist has found beauty in my connection with Paul and compelled me to share our story.

Darkness had fallen when the raccoons came to visit last night. With the evening air still and warm, the heat inside the cottage was oppressive. Having filled our bellies, we migrated outside where the faint hope of a breeze beckoned. The smell of smoke hung in the air, rising from distant campfires. Laughter drifted invisibly across the lake. Cutting through the stillness and the dark, the phantom voices sounded close but came from several directions. They were familiar and soothing in their ghostly nearness. Settling into conversation, we were unaware that a pan left soaking in the kitchen sink silently beckoned our masked friends.

From a few feet away came a scuffling and scraping. That’s when we realized we weren’t alone. Around the corner from us, heedless of our voices, were four disguised creatures crouched at the kitchen door—two adults with their young. Cleverly, they inserted their claws into the front sliding kitchen screen door and pulled. They were almost inside. The anticipation must have been palpable, but they were oblivious that their scheme was about to be foiled. A loud shout followed by clapping sent them scurrying, leaving the door slightly ajar. Several minutes passed when a noise had us on our feet again. Running for the kitchen, we arrived to see one of the rascals was halfway inside, but at the rear door this time. Its brown, plump, furry body had two black eyes peering through its mask at us. It was wedged in a small hole where it had pushed its way through the corner of the screen. Then it was gone. In spite of the heat, the doors got closed for the night.

The next day, a chorus of crickets is my only company as I sit alone, remembering the raccoons’ visit. Curious creatures concealed behind masks, raccoons are full of powerful mystical symbolism. They remind me that we often hide or alter our state, simply to survive. None of us are who we seem to be, changing our masks depending on those with whom we associate and what roles we adopt.

Behind me, a broken fence sits yet again in need of mending. Mine is a green wooden fence, picket style; with so many repairs, surely a strong wind will take it down. Tattered and torn, many of the original pickets gone, it appears quite fragile. Each time a slat of green wood gets torn away, I hammer in a replacement. Multiple varieties and sizes of wood, some black, some brown, some raw coloured, each one different, give my fence a patchwork appearance. Some wired, some hammered, and others bolted into place. Some days I am fearful a sustained squall will topple this fence forever. Still it stands, defiant, intact.

Growing up, my family was fraught with worry. Worry over Paul, my brother whose life achievement prospects were dim under the cloud that was his mental disability. Worry when complex partial seizure epilepsy began at adolescence and threatened his safety. Worry for my mother whose heart was broken, both physically and figuratively. I had become the witness. Quietly perched in a chair listening while no one noticed, I was quite adept at staying invisible. Hiding under the table, listening to grownups talk between hands of cards, seamlessly switching from Dutch to English and back again, wordlessly I recorded events as they unfolded.

My brother Paul is my hero. This is our story. And yet I must also tell the story of my mother who masked her own disappointment, while she championed Paul’s right to live a successful life by teaching him the skills he would need to forge his own path. I know being born into this family was my fate. Even still, coming into this world with Paul waiting was my fortune.

It was on February 17, 1958, that Paul Terance Timmermans was born in Hamilton, Ontario as the first child to Dutch immigrant parents. Nine pounds ten ounces of baby, he appeared with a full head of jet-black hair. His birth was especially slow and caused him to develop hydrocephalus—what was once known as water on the brain. Although quickly controlled, unknown to the new parents, the tiny baby’s brain had been damaged.

Travelling comfortably on his mother’s lap, several days later he headed home, sleeping as she hummed to him. His father drove mindfully so as not to disturb the sleeping bundle wrapped in white and cradled in the arms next to him. Carefully, he navigated their blue Volkswagen Beetle along snow-covered streets. They had been buried in a deep freeze for several weeks, which was rare for Hamilton in February. Inside the car, the heater hummed, and their dreams filled the tiny space as the first-time parents tried to imagine what changes this new life would bring to their lives. Neither could have guessed just what shape those changes would take.

Since infancy, Paul’s dark brown eyes carry within them a perpetual smile filled with deep trust and carefree delight. Paul was there waiting for me when I arrived two and a half years later. Paul and I crossed several milestones together, but soon enough I surpassed him.

“Watch Paulie,” I said.

With exaggerated motion I picked up one shoelace and carefully placed it across my shoe from right to left. Slowly, using my other hand, I picked up and crossed the second lace over the first, making an X before pulling both tight.

“Now you do it, Paulie.”

“Okay Bernice!” His head nodded eagerly.

Carefully and deliberately, he mimicked my actions. His tongue snuck from his mouth and lay on his lower lip; his jaw was set, determined. But his fingers struggled.

Around us was the green and beige chequered linoleum floor of our kitchen. Mom had lain down for her daily nap. We were good at keeping quiet. Dad said Mom had a bad heart and needed her sleep. Soft rhythmic sounds of wood being hand sawed drifted up the stairwell; Dad was busy working in the basement. Mom said Dad was handy. Things have been busy in our house. Several months ago, a new baby brother had come to live with us. The new baby, whom we called Ronnie, slept with Mom. It was summertime in 1964. I was four and Paul was six. We sat alone.

On the wall, the green clock with glow in the dark hands ticked loudly. Paul was ready. Each hand holding one of my crossed laces, I tucked one lace down and under the first. I pulled them snug and tight.

Mom had been teaching us both to tie our shoes; I had mastered the task.

“Okay Bernice.” His gaze moved to his assignment.

Fumbling with the direction of the laces, he wound them over and under, then under and over only to find that when he pulled the laces they had not intertwined. Shaking his head, nose pulled up in a scowl, he dropped the laces. We began again.

About the time that Paul’s patience began to wane, we heard a muffled baby’s cry. Pulling off his shoes and scrambling to his feet, Paul shuffled away leaving me and the shoes behind. Mom emerged from her bedroom cooing at the baby and flanked by Paul.

“I was teaching Paulie how to tie his shoes, Mommy,” I said, running to her side.

“You are Mommy’s little helper!” she said, her eyes never leaving the baby.

Face beaming I asked, “What else can I do for you, Mommy?”

“I would like to put the baby outside. Would you stay with him and watch him? You can take your dolls. Mommy needs to help Paul practice writing his letters for school.”

“Why Mommy?” I asked, following her, dolls in tow.

“Because Mommy wants the baby to get some fresh air.”

Standing in the warm sun, careful not to leave my post, I had grown bored with my dolls. They lay half-dressed and haphazardly strewn, along with their various outfits, below the carriage. Quietly leaning into the carriage so as not to wake Ronnie, I marvelled at my baby brother’s tiny head and gently touched his soft fuzzy hair. Momentarily forgetting my need to stay quiet, I let out a shriek and ran into the house.

“Mommy, Mommy, Mommy!”

She looked up as I approached where she and Paul were working. I did not wait for her to answer.

“I think Ronnie is getting some fresh hair!” My voice screeched.

With a laugh I was sent back to my post.

We cannot have company anymore without Bernice knowing about it. About six weeks ago, so before your third birthday, you were drying the dishes for Mommy in the morning, and you counted out four teaspoons. Very quickly you asked: “Who did you have over for coffee last night Mom?” Mommy asked you to bring the dustpan and the brush and, yes love, you understood that fine and you said; “Here Mommy, here is the strawberry blik” (Dutch translation of dustpan and brush is: stoffer en blik.)

Paul is a real backseat driver. He knows the way everywhere, tells Daddy to watch out for this car or that man that crosses the road, to turn on the turn signal left or right, etc. He knows the way everywhere and is crazy about riding in the auto. Soon you will be going to school, Paul. When we went for the medical checkup, you did not want to raise your shirt so that the doctor could listen to your chest. What a spectacle! The party at school was more to your liking with cookies and ice cream.

A while ago, they were paving the street nearby. You, Paul, were lying flat on your stomach on the sidewalk to take in everything that was happening, all the while singing, “In the cross be my glory ever, till my raptured soul shall find, rest beyond the river,” at the top of your voice. Dear little Billy Graham. Some say you have a voice like a bell, so clear.

A splash creates rings that spread slowly; a fish has jumped. Rain falls gently with a steady soft patter. Strewn across the rock, green lichen mosses glow richly as though the rain has dropped an extra dollop of colour upon them. Pink lines sprinkled throughout the granite are more vivid now, matching their grey accompaniments perfectly. Nature had designed these colour combinations long before interior designers brought them into our homes.