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TToT: Insertion Follows Playback Like Edit Follows Automation – Full Cold Moon, #10Thankful #IDPD2017

“(UN IDPD) serves as an important reminder that globally there are over a billion people with a disability. This year’s theme, “Transformation towards sustainable and resilient society for all” is especially relevant to our accessibility efforts…”

—Microsoft

More on IDPD2017 from the WHO.

I know when and how to celebrate and I am learning when to stand up and speak up for the important things – overall, a thankful post brimming with gratitude really.

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Photo caption: sisters watching the decorating of their father’s 62nd birthday cake. Talking/smiling. Happy Birthday Dad! XO

Ten Things of Thankful

I am thankful for this artistic girl.

Making works of art out of the task of cupcake decoration.

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Making something, all her own, and loving it.

I am thankful for this sly guy.

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He likes to hide, but there’s a mischievous spirit just under the surface, behind the hands that sometimes cover his face when he’s playing shy to the camera.

I am thankful for such a smart and curious almost ten-month-old sweetheart.

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Photo caption: Cousin hugs.

Her big cousin Soph adores her. It’s sweet to see them interact.

Mya is so interested in everything now. She is so close to walking, as she sees the rest of us doing it and wonders why she hasn’t managed it yet.

She is the happiest baby I’ve seen really. She likes to cuddle, but I can barely keep up with her when she’s on the move, and she’s not even a year old yet. Her mother and I are in no real hurry though.

I am thankful for the missing and missed one at last weekend’s gathering and the kind soul he is.

Old soul is my man Maxwell.

I am thankful he could enjoy his new friend’s birthday party. He got so excited. He was counting down the hours to his first party invitation since starting junior kindergarten in September.

I am thankful for a name given, from a friend, that suited my current state rather perfectly.

**Given what you’ve shared recently, I’d say the cauldron’s selection is a potent one for you. Your Embrace the Darkness name is “Good Night’s Sleep.”**

I had mentioned my sleep/dream issues lately and she generously handed this one to me, gifted me with it as a way to accept and deal.

I am thankful for a visit with one of the few people in my life who understand about living with chronic pain.

She brought me a coffee, doughnut, and a sympathetic ear.

She lives with pain and manages to hold onto her most original sense of humour and I take lessons from her on that front – where I find strength through some good sarcasm now and again, I see she does too.

I am thankful my friend arrives home from Ireland next week for the holidays.

I see her and her daughter just once a year, at this time, and it’s a fascinating way to observe the growing up of any child. They are quite the pair.

A little Christmas shopping with them maybe? I want to get her something memorable, as I only get to see her once a year and it takes her a little time, each time, to warm up to me again. A toy may help, but it can’t be anything too big because it must get back to Ireland.

Lots for them to cram into only a few weeks here back in Canada, with family and friends, but it’s always fun.

I am thankful for such kind and generous parents.

They bring me medication when I go away and forget it at home. They go that extra mile, in so many ways, and are flexible in so many ways too.

They are both unflinchingly generous people.

I am thankful for another job completed and well done, hopefully.

I wrote a memoir piece about our family, from the past, and the early December trips to a giant toy store we’d make as a family.

I turned it into a bit of a back-and-forth with me and Brian. We recorded it and added sounds and a bit of music to the piece.

We are submitting it for consideration on my brother’s favourite holiday Christmas marathon radio show he has listened to for the last three years.

Even the year of his horrible fall, when he was slowly recovering with a brain injury, he listened. The jingle bells accompany the radio guy and he plays some of the most obscure music for the season, to be heard on a New Jersey college station.

In the midst of all the musical pieces, he plays short holiday themed stories, recorded by friends and fans. This year we wanted to be included in that.

We shall see what he thinks when we send it to him.

Adding more…

I am thankful for fresh edits to a piece and that time away so I can come back at it with fresh eyes.

I wrote about the road I took through my Yukon visit and the road I’m traveling down in my life.

I worked on it with one editor and took a few weeks away from it. Coming back now, with fresh eyes, I can consider other editing suggestions and work to make it the best piece it can possibly be.

I just saw a Yukon documentary, playing in theatres for a limited time, and this virtual return to the north of Canada has given me new life to put into the writing.

I appreciate all I learn and how I can improve and grow as a writer, with the guidance of talented people I am lucky enough to get to work for/with.

I am thankful for a movie about the Yukon in my heart since I visited there, even without the DVS working.

It’s funny to have the story, on the International Day of Persons with Disabilities, but again we ran into issues with the audio description service at the theatre.

I was pleasantly surprised to discover they said they had it. A worker disappeared somewhere and came back with two headsets and wireless boxes.

Once inside the we turned them on. One worked and the other did not. The first worked, but it was describing a story that certainly wasn’t that of the Yukon.

We were offered their apologies and two free movie passes, but that won’t address this issue.

I did enjoy the film, despite all that, but a documentary, at least, has steady narration.

I don’t even think about going to an action movie or one with a lot of adventure, not without the proper assistance from a helpful person sitting next to me.

This is no answer. Perhaps not that many blind people go to movies, anymore or ever, but this must be improved upon.

As for the movie, I nearly came to tears more than once, as it brought back sense memory of my days there and my deep feelings about so much of that wild beautiful part of North America.

I am thankful for the day, December 3rd, to highlight disability, not just in North America, but around the world.

Every day is a day to talk about it, without becoming preachy. I feel this is something I have been called on to do, but it is a rather tricky balancing act.

I watched a Canadian national news broadcast and no mention at all was made nor any story aiming to shed light on some aspect of disability and what IDPD means to so many. I know an hour long news program can’t get to everything, but I think this should have been covered in some way.

I plan to do a lot more of this activism stuff in 2018 and beyond.

I am thankful for the final super moon of 2017 and the fact that, in spite of my worsening eyesight, I could still make it out on the horizon as we drove home.

I am all about horizons these days. Onward and upward, all while still making the effort to enjoy the final weeks of 2017 in the meantime.

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Mothers Are Saviours, #SoCS

Safe to say: Happy Birthday Mom!

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The idea came from a cousin when I couldn’t think of anything good enough on my own.

Stream of Consciousness Saturday, #SoCS

How perfectly coincidental that the big 60 falls on a stream of consciousness day.

So many people care and wanted to be included in my present to my mom, and I am not done yet.

Whether birthday card greeting or nostalgia and memory, it isn’t hard to find positive things to say about her. The things flow from her, through her, if you’ve even just barely met her. I didn’t think the challenge I was putting out there was so hard.

Some people doubt their ability to use their words for self expression and toward another. They feel my expectation, perhaps, but I only wanted them to feel safe enough in saying whatever came to mind when they thought of my mom and the woman they all know and love.

Even those closest to her might have struggled, but that is just because the feelings are a little too close for comfort and, in having to put into words just what she means to them, it may have felt uncomfortable in the moment. I thought it, thought her, worth the immediate feelings of uncertainty as one sat down to write.

I wanted her to know how safe she made me feel, as her daughter, and how she has saved me, dozens and hundreds of times, from my biggest fears and from myself and the world at large.

Anyone can and soon does feel safe in talking to her, in opening up to her. That’s her gift to the rest of us who have the privilege of her in our world.

All the times I felt so sick, so much pain, and like nobody believed it, she saved me and made me feel safe again..

She was surprised by her gift and more is being added, even just today in fact.

A mother should want to do it, protect their children/grandchildren, and she does. My mother for the save.

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TToT: Raining Lumos and Dobby #DisabledAndCute #IAmAPreexistingCondition #10Thankful

Lord, when you send the rain

Think about it, please, a little?

Do not get carried away

by the sound of falling water,

the marvellous light

on the falling water.

I am beneath that water.

It falls with great force

and the light

Blinds

me to the light.

—James Baldwin, “Untitled”

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The magnolia blooms for a short time only. True beauty doesn’t often last. It comes and it goes.

The rain kept coming, across parts of Ontario and Quebec, for most of the week.

Raining cats and dogs: Lumos and Dobby are mine.

Ten Things of Thankful

I’m thankful for delicate things in nature.

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We found this cracked robin’s egg on the driveway and I thought it a sweet discovery. My mom improves on the nature and this sign of spring.

I wondered then, where the inhabitant of the egg went. How did the egg land and not crack into even more pieces? I wondered things.

I’m thankful for leftover wine.

My sister had a wedding shower for a friend and there were leftovers. She was kind to share them with me.

I’m thankful for a writing group built around a hand sculpted wand.

One of our members of “The Elsewhere Region” brought in a birthday gift she’d received. It’s like the Harry Potter wand I bought, even the box, but made specifically for her, with love from a friend who knows her well.

The Celtic Tree Calendar

The stories we all came up with were interesting. Mine was about a teacher of the blind who started a braille club in her class and her wand accidentally fell out of her desk drawer. She almost had to reveal to all her students that she was magic, until her visually impaired student saved her.

The others used their very interesting imaginations and came up with wild tales of magic and I was once more blown away by their storytelling abilities.

I am thankful I could help spread hash tags about the disabilities many of us were, in some cases, born with.

The hash tag “I Am A Preexisting Condition” is making the rounds on Twitter since the shocking revelation that the GOP and the House voted in their horrid healthcare plan, which is making many people I know with chronic illnesses and conditions afraid for what will happen.

I felt helpless and wanted to do something. I couldn’t think of what that could be. It’s just so outlandish.

I am thankful for my nephew’s creativity, imagination, and the ideas that are all his own.

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He drew an X on a piece of paper and tacked it up on the door. We saw it there when we arrived the other day and I was smiling when I heard what it’s for.

He put it up to keep the spiders out.

NO SPIDERS

I am thankful I could give my niece her bottle and put her to sleep.

My nephew was staying with his grandparents overnight and he was a bit sad as bedtime approached. My mom comforted him and I fed Mya her bottle. That girl loves to eat.

Then she fell asleep over my shoulder.

I’m thankful for echoes of a memory with a lullaby.

My mom started to sing an old lullaby that her mother, my grandmother, used to sing. This seemed to bring back memories for me, something so vague, about my grandma singing to me.

“Go to bed my little darling. Close your big blue eyes. Soon you’ll hear the sandman calling, far beyond the skies.”

It’s funny that you can sense a memory from the past, so long gone, and even start to wonder if it really happened. I remember being sung to like that, but I don’t know when or how old I might have been. I seem to remember being held, but can any of us remember back that far into our pasts?

Well, I held Mya and the entire time I tapped that song out on her back, gently, over and over again, trying to sharpen my own memories. It didn’t work, but the song is a beautiful one.

I am thankful that France did not make the same mistake the US made.

France is a totally different country than the US of course and I knew they would make the right choice with Emmanuel Macron.

Just a few weeks ago, Canada gave a giant sigh of relief, when our own (he was being called Canada’s Donald Trump) and he was running for the Conservative Party of Canada, dropped out.

Kevin O’Leary is a businessman, like 45, known for his role in Shark Tank, but he didn’t feel quite as outrageous. Maybe that was just my wishful thinking there, but he decided on his own that he couldn’t stay in the race.

I don’t know what will happen with the EU and I hope no more terrorist attacks occur in France or anywhere else, but I am sure we aren’t done with all that, sadly.

I am thankful for the sun to make its reappearance.

Even I grew weary of all that dreary weather, day after day after day. The sun does shine again, but unfortunately, some are dealing with major damage to their homes and their lives. Rain has power to mess with us. The sun revives.

And this last photo isn’t the most pleasant sight. I begin with a beautiful flowering bush and I cap off this TToT with the scene we came across in my back yard.

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I have squirrels living in the top of my garage and this one came to a sad end, landing in a tree and hanging there until we noticed it. Poor thing.

Loss and endings. I just hope those affected by the flooding, in Quebec mostly, can salvage something of their homes.

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Only When I Breathe #SongLyricSunday

How can I put this? How can I possibly make people understand how it feels?

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I struggled with these kinds of questions for many years. Pain can be physical or emotional. Both, I know now, are comparable.

This song is not her biggest hit. I’d say Melissa Etheridge was at the top of her game in the nineties, but this one came out a few years after I’d started experiencing daily pain around the year 2000, from either headaches or somewhere in the rest of my body, mostly my limbs, but really a sensitivity to the touch.

This song was likely about emotional pain, which most songs are about, but by this time Melissa probably experienced both, within relationships or physically because of the breast cancer she was diagnosed with.

***

I, played the fool today
I just dream of vanishing into the crowd
Longing for home again
Home, is a feeling I buried in you
I’m alright, I’m alright
It only hurts when I breathe
And I can’t ask for things to be still again
No I can’t ask if I could walk through the world, in your eyes
Longing for home again
Home, is a feeling I buried in you
I’m alright, I’m alright
It only hurts when I breathe
I’m alright, I’m alright
It only hurts when I breathe
My window through which nothing hides And everything sees
I’m counting the signs and cursing the miles in between
Home
Home, is a feeling I buried in you, that I buried in you
I’m alright, I’m alright
It only hurts when I breathe
I’m alright, I’m alright
It only hurts when I breathe, when I breathe
Yeah, it only hurts when I breathe, when I breathe
Oh,it only hurts when I breathe

LYRICS

***

It’s hard to make people understand. We all experience emotional pain from loss of a loved one or other family troubles. Love ends. People leave.

Most of us get a headache or the flu or a broken bone at some point in our lives. I know that child birth can be painful, not from personal experience but from those who have felt it, but I know that pain fades because of the reward for it in the existence of a precious child. Most acute pain fades from our memory as time passes.

It’s chronic pain that is hard to explain because most people, like the thought of living life as a blind person, can’t or don’t want to think too hard about it, don’t want to imagine that happening to them, but living with chronic pain changes you. It’s changed me.

The awful pain scale is a familiar way to help people understand, but pain is subjective and one’s ten is another’s seven. If ten is the worst pain you’ve ever experienced, what was that worst pain? Everyone has had such varied experiences with pain that it makes it hard to rate sufficiently.

Stabbing…throbbing…dull…sharp…pounding…and so on and so forth.

I’ve only found a few people in my life who truly understood it. One of them is gone, so I am greatly familiar with both emotional and physical pain from many sources.

I decided this
Song Lyric Sunday
I would focus more on the physical side, as I’ve written plenty on emotional pain already.

I don’t talk a lot about living with chronic pain, here or elsewhere, because I don’t believe people truly want to hear about it too often. This song brings it up in the chorus though, as saying “it only hurts when I breathe.” While coming off sounding dramatic, this one line certainly gets the point across.

Don’t get me wrong, I love breathing, but I could do without the pain.

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A Balloon In My Mind #AtoZChallenge

In my dream, the balloons were in the yard, trying to get in the house.

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My grandma once told me of the time she was walking along a beach and came across this blue balloon thing on the sand. She gently reached out toward it. She wasn’t shy, even when she had no clue what something was.

The A to Z Challenge – J is for Jellyfish

I have seen jellyfish in my distant memory, but since I’ve lost more of my vision, the image of what one looks like has faded.

So now, after my grandma’s description and the dream I had, I think of a balloon whenever I try to imagine what a jellyfish looks like.

I have studied them intensely, on the many ocean documentaries I’ve watched in my time. They aren’t something I would like to touch in the near future. I fear walking along the sea or swimming in it, for fear of coming up against one. I hear the stories of stings and still, for some reason, the jellyfish is still one of my favourite marine creatures.

There is a place, an inland lake, somewhere in the south Pacific Ocean, on an island known as Palau. I want to visit Jellyfish Lake, if I could go anywhere, because then I could stop imagining what a jellyfish looks like, and actually swim with a bunch of non stinging jellies.

What might you envision in your mind, if you’d never before seen a jellyfish? Balloon or something else? Balloon with stinging tentacles of course. Such cool creatures, but it made for one hell of a bad dream.

***This is my first year of joining the A to Z Challenge and so I’ve decided to post randomly, as a way for new visitors to my blog to get to know me a little better. I look forward to discovering some interesting new blogs too.

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Time, Timing, Connections, and Space #Diabetes #AtoZChallenge

It’s a disease which can eventually lead to things like blindness and kidney failure, both of which I already have.

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There is a connection there, just one of multiple connections.

The A to Z Challenge – D is for Diabetes

My nephew has a father because of modern diabetes treatments. A magical pump, carried close to the body, able to deliver the life saving insulin a diabetic needs would have been unheard of fifty years ago.

Sometimes, at night when I can’t sleep, I think about other late nights when I would talk for hours with my grandmother. Sometimes she would talk to me about her little brother.

I think about that small boy and I wish I could have reached out to him, like I did to my own little brother when he was sick.

My mother never got to meet her uncle and I never had the chance to meet my great uncle. He was only four when he passed away from diabetes, back in a time when treatments were barely available or known.

It’s twenty years since I was a sick and scared young girl, but I was lucky to have been born after kidney dialysis and transplantation had been well developed. A matter of timing. I think about that little boy, so ill, and I feel a connection that stretches through time and space. I wish I could ease his suffering. All the bits of memory my grandma told me about that time and that boy.

I think of my four-year-old nephew and I watch him colour with his markers and jump on the bed when he’s supposed to be getting ready for bed. Then that other little boy pops back into my head.

I would like to write more about this, a piece about timing and connections of strange makings. I’m not sure this is entirely my story to tell…just one of many I can’t get out of my mind when I think about all that happened in my own young world, just exactly twenty years ago. It weighs heavily on me, somehow.

And so is writing about it not the answer?

***This was a result of insomnia, a late night Facebook post I wrote and thought it fit this challenge and the corresponding letter perfectly.

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Past and Passing, #SongLyricSunday

Okay, so I decided to try the A to Z Challenge, on a whim yesterday, but the trick of it is that you are supposed to blog for every letter of the alphabet, each day except Sunday. Well, the challenge began on a Saturday this year, so I guess I can use today to prep for Monday’s post.

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And also I can do my favourite thing of the week.

Song Lyric Sunday #SongLyricSunday

In the month of March (of which we just completed a few days ago) a friend was posting for an 80s music challenge on Facebook. She shared a song from that decade, every day, and then she extended it. I discovered some great ones from her. I joined in for a week, stopped for a week or two, and then thought I would end the month (on the final days which were 30/31st) by posting two more.

https://www.youtube.com/watch?v=1NvsMKYgCsM

This is the first of the final two I posted, on March 30th.

I like it because it is a beautiful song by Richard Marx and I love the saxophone solo and the fantasy feeling throughout. Apparently he wrote it about him and his wife and a trip they took to Hawaii together.

Endless Summer Nights, 1988

Sounds like paradise to me.

***

Summer came and left without a warning
All at once I looked and you were gone
And now you’re looking back at me
Searching for a way that we can be like we were before
Now I’m back to what I knew before you
Somehow the city doesn’t look the same
I’d give my life for one more night
Of having you here to hold me tight; oh, please
Take me there again Oh, oh

[Chorus:]
And I remember how you loved me
Time was all we had until the day we said goodbye
I remember every moment of those endless summer nights

I still recall the walks along the beaches
And the way your hair would glisten in the sun
Rising in the afternoon Making love to you under the moon, oh
Do you remember all the nights we spent in silence
Every single breath you took was mine
We can have it all again
Say that you’ll be with me when the sun brings your heart to mine Oh, oh

[Chorus]

There’s only so much I can say So please don’t run away from what we have together
It’s only you and me tonight So let’s stay lost in flight Oh, won’t you please surrender


[Chorus]

Endless Summer Nights (Lyrics)

******

So, I went with A to Z Lyrics because that kind of mirrors the A to Z Challenge and I like coincidences like those.

I like this Richard Marx song because it feels nostalgic and that’s what the eighties feels like to me. He’s looking back on a past memory, a passing thought, vacation in paradise with a lover. The story is told well from Marx’s POV.

I, myself, was born in 1984 and so it’s the decade where I was able to just be a kid, with my family, a simpler time in reflection.

I’ll never get that back and that makes me sad, despite everything I’ve been lucky to have and experience since those years of innocence, when everything was under control in my world and I was taken care of. It feels like so long ago now, a time long gone by.

In the moment, sometimes, it feels like it will last forever, an endless perfect moment or night with someone you loved. Sadly, realistically, it never does.

And one more, likely lesser known 80s song, from my favourite movie of the decade: 3 Men and a Baby.

https://www.youtube.com/watch?v=aznod0Ij43g

BONUS.

Boy, do I love 80s music.

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