Patti M. Hall - Loving Large: A Mothers Rare Disease Memoir

Copyright Patti M. Hall, 2020

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Publisher: Scott Fraser | Acquiring editor: Rachel Spence | Editor: Paula Chiarcos

Cover designer: Courtney Horner

Cover image: istock.com/123ArtistImages

Printer: Marquis Book Printing Inc.

Library and Archives Canada Cataloguing in Publication

Title: Loving large : a mothers rare disease memoir / Patti M. Hall.

Names: Hall, Patti M., 1966- author.

Identifiers: Canadiana (print) 20200164198 | Canadiana (ebook) 20200164236 | ISBN 9781459746367 (softcover) | ISBN 9781459746374 (PDF) | ISBN 9781459746381 (EPUB)

Subjects: LCSH: Hall, Patti M., 1966- | LCSH: MothersCanadaBiography. | LCSH: Mothers and sonsCanadaBiography. | LCSH: BrainTumorsPatientsCanadaBiography. | LCSH: Tumors in adolescencePatientsCanadaBiography. | LCGFT: Autobiographies.

Classification: LCC RC280.B7 H35 2020 | DDC 362.19699/4810092dc23

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To all the giants in my life, medical, mythical, and magical.

This memoir is a story of my truth, and mine alone. In some instances, I have changed names of individuals and places in order to maintain anonymity, and I have recreated events, locales, and conversations based on my memory of them, however faulty or diluted.

I wrote Loving Large for the raremoms and warriordads parents forced on a harrowing, interminable voyage without a map like more than thirty to forty million families across North America today. The metaphor of being lost at sea resonated with me. My new normal was fearing that the water around me was filled with unspeakably frightening things, and yet I had to move through it, toward a destination no one would ever choose.

We think we comprehend the boundaries of responsibility when we opt in to parenthood. (We think we know a lot of things when we have our babies.) I believed I was a competent mother by the time my kids were in their teens, but I was pulled into unknown waters by duty, loyalty, and love, sure, but primarily by necessity. Because I couldnt find an answer to the one question that drove me to wade in still deeper: If not me, then who will save my child?

This is what parents sign up for in the for-better-or-for-worse scenario called Life With Kids. But I was so far out of my depth that I wondered how I would survive without a map or the ability to read the stars. What did that make me? I looked up the origin of landlubber. Was it really, as depictions of pirates portray, just landlover mispronounced, its edges rounded by windswept, ruddy seamen, who cared less for diction than for drink? Did it mean landsmen those whove never been to sea? Was it a jab at someone who really should have stayed on land? Or was it an aptly applied label that centuries of usage had morphed into a stigma, a slag? Admiral W.H. Smyths 1867 digest, The Sailors Word-Book, defined landlubber as a sailors insult for the masses of people who didnt sail and were also unemployed, but other nautical dictionaries add that a lubber is a clumsy person and sometimes a lout, and to an able seaman, unseasoned or inexperienced. This would be fairly applied to a newbie sailor who hasnt yet gained her sea legs, I reckoned. A landlubber could be just a person who tipped and wobbled on vessels that were keeling. Ive been that landlubber, was she, am her. I was the sailor, the mother, the woman who found herself adrift. The one who lost her moorings.

Although writing was my profession and my passion, and writing to heal one of my specialties, I had to be spurred to write our story at first, and that prompt came from my son. We should write a blog or something, to tell other people how to find doctors. So I wrote. Aaron changed his mind, or his experience with the disease changed it for him. He waffled about being involved in the telling or not telling of his story, ultimately preferring his privacy over reliving the events. But he always supported me writing about it.

As a writing coach, I knew the sound of writers angst well, but was surprised to hear it coming out of me. I couldnt remember the exhausting anguish of inching forward. What I needed to nudge me arrived in the form of an email from the other side of the world, from a mom whose daughter had a diagnosis and little else. I saw myself in another plaintive, competent, frantic mother, who I thank for this published outcome. Aaron had presented with sore knees. Claire, Tonis daughter, had taut, unbending legs, her ligaments stretched by bones reaching for height her softer tissues were not designed for. My story gave Toni the knowledge that she could endure and her child would survive. Toni was magnificent. She is a medical superhero for Claire. I wrote as if Toni would be my reader.

Loving Large may be my book, but it is also your story, every parents story. You dont need to feel alone anymore. We are solo on the voyage, but never alone in feeling lost. Adrift at sea together, we endure because love calls us forward, and so we wade into the dark.

I was careful to place my feet between my teenage sons my feet that were less than half the length of his size fifteens, my painted toenails like ten dropped rose petals on the beige tile floor of the shower.

Lets do this, I told us both as he shivered, holding the towel around himself, and I checked the water temperature. How many times in his life had I dipped my toe in first or waved my bare hand under the faucet marked H before I let it touch his skin?

The warm streams pressed down on his hair, so thick that it took quite a while to get soaked against the shape of his head. He leaned back to let the water hit his face, to savour the rinsing away of the dingy feeling of being unbathed for so long, of tubes and medical tape and fluids.