Friday, 29 March 2013

Read all about it...

I scoured the city to find lots of copies of the Newsleader, cause I'm crazy like that.  I finally called Brentwood Mall customer service and asked if they had some.  They did, and saved a pile for me.

Hopefully some of the people here in Burnaby, sipping their coffees, chasing after their kids, and enjoying this beautiful sunny day have also read it, and would like to donate to the MS Walk.

It's weird seeing yourself in print!

Thursday, 28 March 2013

It's Spring!

Just a beautiful picture that makes me smile.  I think it's officially spring in Vancouver.  What excites me most:  not having to bundle up my kids in a zillion layers, plus hats and mits.  Thank God.

Happy Easter long-weekend!

Wednesday, 27 March 2013


Buttons from Six Cent Press, Vancouver.

Please donate to team "Making Lemonade" in the 2013 MS Walk!

(You'll get a button!)

And here's Oliver, ready for the sandbox, modelling a button:

Monday, 25 March 2013

From a Mom: Guest post

I am excited to start sharing the stories of important people in my life.  Their relationships with me, our shared experiences, our lives in the midst of my MS.

Today, I start with one of the most important - my Mom.  She's a teacher, mom of two grown-gals, lover of art, travel, gardening, wine, and family.  And here's what she had to say:

From a Mom
By Sandra Hughes

Sarah at only a few hours old in my arms, eyes wide, seemingly composed, observant and aware - my memories of Sarah go way back.

And it became clear that a child is not a blank slate waiting to display the parents' mindsets and characteristics.

While it was and is true that we are very much alike - in our quiet natures and pragmatic views - it was very apparent that Sarah possessed qualities that were her own.  Her logic, drive, and inquisitiveness are hers alone. When she, her sister and I go out together, Sarah is the one to ensure we arrive at our destination.  Erin and I would navigate incoherently and eventually, inevitably get lost.  Sarah doesn't get lost.  As early as junior high, her drive saw her consistently on the honour roll, editor of the yearbook, collector of various academic awards.  The undergraduate and graduate degrees came next, with Sarah always clear about what she wanted and how hard she had to work to get it.

Sarah has dealt with her diagnosis of MS in the same head-on fashion.  She knows what periodically happens with her illness and does her best to head it off.  Injections, diminishing stress, eating properly - she does it all.  And when there's a hurdle, like vision or hearing that inexplicably isn't there anymore, she unflinchingly gets the treatment that will help her (and doesn't moan about the side effects).

And she's thrown her enery into being a fundraiser for the MS Society.  A good chunk of the persistence that she's shown all her life is now directed to raising funds and awareness. She's grateful for the treatment she's received and of course would like to see further advances.

She's a formidable asset to this cause


Me 'n my Ma (1980 or 81)

Saturday, 23 March 2013

I'm ready for my close up...

Today was interview-day.  I had to scoot all the males out of the house so I could quasi-clean and get myself presentable.  Read: get out of those pilled 6 year old Lulus, put some make-up on, and scrub the peanut butter off the couch.

The Burnaby News Leader came to my house.  I love the media - lights, cameras, and pen and small notepad at the ready.  And always a retro hat and good shoes. 

We talked about multiple sclerosis, my diagnosis, my treatment, my hopes, fears, and reality.  We talked about the upcoming walk and my premonition of tears.  Lot of them.

Then came photo time.  I perched across my sink, with some lemons, a lemon juicer, and a pair of muddy old sneakers.  What fun!  But to say I am not naturally photogenic is a huge understatement.  I did not know what to know to do... teeth?  No teeth?  Look at the camera?  Gaze at the lemons?  Chuck them across the room?

It all went well, and I feel so honoured to be able to share my story.  Hopefully it resonates with someone out there, brings more awareness to MS, and helps increase donations for the MS Walk.

Friday, 22 March 2013

Logo time!

My "will-work-for-wine," wonderfully talented graphic artist cousin has made this.  Isn't it wonderful?  We have grand plans... pins, buttons, stamps.  Join the movement! - Donate to the team or the MS Society.

Okay, I'll admit it, it is probably just me who wants the wine.  But you can come too, Shawn!

Wednesday, 20 March 2013

How to be strong?

Sometimes people ask me where I get my strength from.  How I cope with this and still manage to smile.

And, let me tell you, it is not an innate ability for me.

I have to force it, work on it.

It is a constant process.

A big inspiration for me was, and is, my step-Dad, Robin,.  He passed away from cancer almost 11 years ago.  He was diagnosed, given only months to live, yet to us, still had that same old smile planted firmly on his face.  I know that underneath it, his world was churning and he was terrified.  But he knew he couldn't fall apart. 

He showed me how to face adversity, albeit of a different kind.  He showed me how to not give up.

Even though this was a lesson that would take a decade for me to fully appreciate.  Until my diagnosis.

I was sent an email from one of his sisters today, telling me:

"I admire you and what you are doing so much.  Robin would have been so proud of you."

And I hope (wherever he may be) that he is.  The very thought of that makes me want to fight harder, advocate more, and remember how much he taught me.

Thank you, Jill, for making my heart smile with memories and happiness.  And thank you, Robin, for being a great human being, and for passing some of that along.

Laughter is the best medicine

I bought this retro-esque art in Guernsey this past summer simply because it made me laugh.  Ironically, this was while I lost my vision, and was in the throes of my worst MS relapse thus far. 

It now hangs in my kitchen, and every time I see it, I smile.

It's funny - It doesn't remind me of being overseas, terrified, and without familiar medical care.  It has become the ironic epitome of that trip, that process of diagnosis confusion, and the long drawn-out process of returning home and finding out what was wrong.

And it's true.... I have absolutely no idea what's going on - mostly involving my MS, but also involving parenting, house-keeping, cooking, and life in general.  And, sometimes, ignorance can be bliss.  At least for a few minutes, anyway.

Sunday, 17 March 2013


We had fun celebrating "leprachaun day" at the parade in downtown Vancouver.

It was cold, windy, but sunny, and a great way to squash some family time into our busy lives.  I think that is an important thing to remember.  Even more so right now.  Just a couple hours of  normalcy amid a lot of recent chaos.

Even the Englishman wore green (hidden under his coat).

Oliver yelled "More, more" at the pipe bands and Jack waited for fistfuls of candies to be thrown into the crowd.

And now I am having a (not-green) beer... purely to celebrate my heritage, of course.

Thursday, 14 March 2013

For a Mother's heart

Nothing makes you forget sickness, disease, pain, or sadness like your baby.

Especially with feelings of immense pride. 

It is an awesome experience.  And evokes the biggest smiles you could imagine.

Here's a little from Jack's term two Kindergarten report card:

"Jack is an articulate, interested, and enthusiastic student who enjoys the activities of the day.  He demonstrates growing feelings of confidence, following routines, and rules with ease.  He can focus on assigned tasks and makes personal choices easily.  He completes class assignments with care.  Jack has a good attitute toward work and learning, and always wants to do his best.  He is a good role model for the other students.  Keep up the great work, Jack.  Your desire to learn and be the best person you can is noticed."

To celebrate, he gets to dump ALL his lego on the floor and play to his heart's desire!

Tuesday, 12 March 2013

The waterworks

Last night I cried until my face was red and my eyelids were puffy.

I finally cried.

And I'm not sure what sparked it.

I have been sharing my story with the MS Society, to help bring awareness to the disease and encourage fundraising - so maybe it was that?  My entire family has been sick with the flu for a week - maybe it was the exhaustion from that?  I had just done my nightly injection, hit a vein, bled everywhere, and was left with a very ugly and sore bruise - could have been that too.

It was an evening that culminated in all the aspects of this I don't like.  The exhaustion, the physical marks and scars.  And perhaps the hardest - the emotional.  Thinking about, remembering, and talking about the moment of my diagnosis.  It's a hard memory to process.  Still.

But I cried.  I got some of that energy out.

It was liberating.  I felt free just sitting there, ugly-crying about my MS. 

And sometimes, all you need is 10 minutes to freak out.

And funnily enough - the morning comes, life continues  School drop-offs are made, rousing games of trains are had.  A visit to the book fair excites everyone.

And then you wonder what all the fuss was about. 

Sunday, 10 March 2013


Happy birthday to my Mom - my best proofreader, grammar-guru, and blog encourager. 

See, Mom, I do know the difference between "it's" and "its!"

It was a lovely day for lunch at a local winery.  We seem to end up there every year, for different occasions.  It's called Bacchus Bistro at the Domain de Chaberton winery.  And if there is a way to my heart, it's through some wine and good French-inspired food.


Jack's teacher knows I have MS.   And over the past 6 months of Kindergarten, has developed an amazing aptitude to read his little mind.

The other day she pulled me aside to tell me how conscientious Jack is.  He puts such effort into creating happiness for others and goes beyond 5-year-old expectations to put a smile on everyone's faces. 

I wonder if perhaps this is because he is more aware of my health issues than I thought.  He just has this extra sense sometimes.

I don't know how true that is.

But I am so proud of my little soul who just wants everyone to be happy.

Wednesday, 6 March 2013


Five months into my injections, I finally learned what the tweezers (ahem, "needle removers") are for.

I loaded up my injector, put it on my skin.  Then adjusted it - a little too vigorously, apparently.  All while I pressed the button.  Out came the needle - enough to jab me - but then it got stuck.  Stuck.  Yes, stuck

And then the machine stopped, and turned itself off!

Another moment too comical to believe...


Some reality came in the mail today.

I ordered copies of my previous MRI reports to have.  Honestly, I am not sure why.  I've heard the synopses from my Neurologist many times.  I've seen the images many times.  Everything has been analyzed, shown, viewed.  But I wanted something.  Something that had the words on paper. 

The official-ness of this all.

I think I wanted the reports to evoke the emotions I've been waiting for.  I think I was hoping it would feel more real. 

The highlights:

"Multiple high foci (greater than 10) can be seen distributed throughout both the left and right cerebral hemispheres.  The largest lesion measures 8mm in length.

The morphological appearance and distribution of the high foci are consistent with primary demyelination (MS).

At the level of C4, in the posterior aspect of the spinal cord, is a 5mm lesion which extends for a distance of 8.5 mm.  The appearance is consistent with a demyelinating lesion/transverse myelitis."


But, I am feeling happy today, so am going to end this post with this: