Gracie's Mum: A story of a Mum with MS

Do Over

2012-02-23T17:30:00.000-04:00

I’m thankful for my friends. They’ve been through a lot with me, and continue, both willingly and unwillingly, to persevere in the craziness that my world has so suddenly become.

Two years ago when I needed a drive to physiotherapy after my release from inpatient care but before I was declared safe to drive, Lenna stepped up and offered her service.

With her two beautiful girls in tow, she drove my battered body, embroiled spirit and defeated sense of self to my appointments.

It was the first drive to the appointment I remember the most.

She, always the great optimist, forward thinker, asked me a remarkable question. She said: “you must feel like you could just take on the world, you must see the world so differently now, I mean, you must feel so....like you’ll never take anything for granted anymore, like you’ll always live for the moment”.

“No”, I said. “I don’t feel any different. Things just happened to happen this way, it sucks, but it’s over, we move on.”

Wow. I couldn’t have been more wrong. But before I was wrong, I was bitter, angry and foolish in my thinking.

At the time, I was reeling from a great loss and from the fact I had avoided the potential of an even greater loss.

I didn’t feel at all lucky. I didn’t feel inspired. I certainly didn’t think there would ever be much of a future in which I’d be presented with the opportunity to take things for granted, let alone contemplating to either live or not live in the moment.

I was pissed. I was angry that I had to have gone through the previous 2 months at all, let alone the previous 4 years. I was angry that I had lost myself and that no one seemed to get it.

Lenna got it though. She knew, as she always does, that life is full of so many surprises, so many “do-over’s”.

I feel that I’m in my “do-over” phase now. I recognize how fortunate I am to not be in a wheelchair. I recognize much more than that too. I know my family, my friends, they had a choice. They could have left me. I had been awful to them. But they stayed. My god, they stayed where, if I could, I would have ran so fast, so far. But they stayed.

I owe them my do-over phase.

At least that much.

It’s been 2 years. 2 years since I fell suddenly ill. And the world around me fell down in pieces that blew away in the warm early spring wind of 2010.

And not one day goes by where I don’t worry that it will happen again.

On February 12^th we silently celebrated the fact that I had been in remission for one year. No party, no woo hoo just a simple Facebook status. Something about me making MS my bitch.

On paper, I’ve been in remiss of any great catastrophic event. But the fact remains that every little twitch, ache, pain, anything, causes me alarm. Most of the time I can hide it or go on without stress, but sometimes,

I’m driven to tears of fear, of real pain, of dire need to wish this hell on someone, anyone else.

But then the moment comes and I realize that there is absolutely no sense in worrying about what hasn’t happened yet and that that goes against the essence of the do over phase: to live in the moment.

I worry about letting my guard down, showing my fear in front of others, letting them know I’m undeserving of their claims upon me of being inspiring.

They see my drive as inspiring, but it is inspiring by accident because I’m mainly driven forward in fear.

I’m in constant fear of missing a moment, or of never getting that moment back or being robbed of future moments. Of failing at the do over.

I must admit though, I don’t know how much longer I can keep this pace. It’s hard to find the balance every day required of the wife. Of the mum. Of the instructor. Of the friend. Of the sister. Of the daughter.

The loss of my confidence is terrifying.

My legs have been growing weaker each day and my limp is far more pronounced than even a few weeks ago. My chest is heavy, with a constant feeling like a band is tightly wrapped around. My hands are numb.

My thoughts scatter more readily and easily. I’m so very tired.

Accommodations and concessions have been a constant topic of conversation. Do less at home. Do less at work. Just do less.

It’s terrifying how I am forever always embroiled in a battle between the me I was, the me I will never be and the me I have been forced to become.

Lenna was right that day, so right. Live for right now. But to apply this technique is not without difficulty.

Grace had the chicken pox last week. She had the vaccination on schedule and so therefore her bout with them was minor. However, I had to be careful not to get too close during the contagious stage because of the drug that I am on and the risk a virus poses to my compromised immune system. Steve had to be the alpha parent while I stayed back on the sidelines. I went to work while he stayed home with Grace. I missed out on caring for her, cuddling her, making her more comfortable. All for the sake of my own health.

All for the sake of not becoming weak, sick, hospitalized. Again.

Sometimes the fear is suffocating. Sometimes the fear is isolating. The fear is always what both propels me forward and stops me dead in my tracks.

At the moment, above the longing for my bed, a dark and quiet room and the dawn of a new and pain free day, I’m happy that the ridiculous pink cane remains, unused for over a year and a half, in the trunk of my car.

Small battles. Big victories. Life, done over.

Enjoy your today.

Hearts and Thoughts: Faded But Not Away

2012-02-01T14:42:00.001-04:00

Winter Angela sucks. She’s much more interesting in the summer.

Restless.

I need to move, I need to do something. Go on a trip. Reconnect with a lost friend, lost family member.

Reinvent myself. Find myself. Get lost inside myself. Something. I’m not melancholy, not blue. I’m just restless.

I actually did reconnect with an old friend over the past weekend. I reconnected with teenage Angela while watching the Pearl Jam documentary Twenty.

Man I love that band. As much now as I did way back then. Every song from Ten and Vs. and Vitology takes me back to some memory that was long forgotten. I can smell my old room, see the posters on the walls and almost hear the hushed, or uproariously loud with laughter, teenage telephone conversations while tucked away in my second floor bedroom in the days long before Facebook and text messaging.

The 1990’s were to me and most in my generation what the 1960’s were to the Baby Boomers. It was an era filled with pivotal moments in the journey toward one’s coming of age.

It was an era that began an existence without the Berlin Wall and saw the end to the Cold War but filled with many plights and fights in its own right like the first Gulf War and the Free Tibet movement.

Music was being reinvented and a new rock, an alternative rock was breaking ground.

And anything we could do that was an alternative to the mainstream became, in itself, the mainstream.

For me, it was a time filled with Friday’s at local music venues for shows and battles of the bands where my friends and I felt we were part of something bigger than ourselves.

My friends, my peers and I all had causes, from vegetarianism and veganism to fighting for religious and political freedoms both here and abroad which made way for the fight for social freedoms of expression like, body piercing and tattoos and for some, publically ‘coming out of the closet’. And at a catholic high school, that wasn’t easy.

We knew though, who we were then and we found ourselves only by being perpetually lost.

Lost in love, lost in the experimentations that come with growing up whether it was with sex, with drugs, with rock and roll or all of the above and we were lost in a space of time that required a need to both rebel and to be parented.

We found ourselves, who we were, in our friends’ parents’ basements. We found ourselves around campfires at campgrounds out of our parents’ sight and mind. And we found ourselves crammed in our friends’ old station wagons or pickup trucks which were always on route to nowhere in particular.

We knew we liked to be alone in a group where the music was always blasting and the air always thick with smoke.

And we knew we hated the cool kids for being cool because they were lame and they all looked the same.

But we knew we were cool by not trying to be cool and we were confident and arrogant and the sense of entitlement we felt, felt earned as if we had fought a hard fight to get what we deserved.

And many of us related to the rock stars and public figures we idolized at the time. We were inspired by them.

And frankly, rightfully so.

Imagine what one needs to experience, to go through, in order to write those songs, to sing those words.

Imagine what they have seen and felt along the road to glory.

The Kurt Cobain’s and Eddie Vedder’s of our world were living exactly what we were feeling, to some degree of course.

We had all lost someone important, somewhere along the way, we had all felt slighted and/or wronged by our parents or an older sibling at some point and we all worried how the world would look when we were 30.

We related to them because we too felt we were going through tough and important things, things no one else would experience or at the least, not in the same way.

I wonder though, how many of us know that person anymore: the person that we were.

That Angela has been through a lot as well and she has long since perished in the elapsing of time.

I was happy to have found her last weekend.

I was happy to recognize too that 14, 15, 18 years old Angela still has a warm and comfortable spot in my 30 something heart.

Somewhere between University and right now the angst was strained out of me.

I no longer live on a diet consisting of only Diet Coke and cigarettes and the occasional veggie burger. I no longer chain smoke or smoke at all for that matter. I don’t wear black nail polish or black lipstick or flip the bird in the face of authority anymore. I still listen to music way too loud and there are many times I wish I never quit smoking in the first place. I’m still a vegetarian. I still don’t go to church but I still and always will vote NDP. I still and probably always will speak before I think and always with more fervour then necessary.

Amazingly the one other thing from the 1990’s other than my love for Pearl Jam that has not waivered is my relationship with Steve.

In a grade 10 English classroom we fell in love. Albeit from afar and not publically official until university, it was love none the less. And while we were ‘just friends’ in high school and dated several other people, since August 31^st, 1998 we have continued to prove that love can and will weather any and all storms.

I have different causes that move and push me now, important as any before but most with a family focus. And the motivation to continue on is born out of pain and necessity, heartbreak and the need for redemption.

Like many, I too have grown up, forgiven, and moved on but somewhere , deep down below, we all remember the power behind the magnetism to a cause and the need for change, both around us and within us.

The young men of Pearl Jam are middle aged dads now and the generation that idolized them once, loves them still and is catching up in age. And the years that picked up from Ten, Vs. and Vitology at No Code and evolved and continued on to Backspacer and beyond will have a soundtrack all their own.

And it occurred to me.

We are all the same now as we were then.

But we’ve all changed.

By not changing at all.

On The Long Road We Play

2012-01-30T16:05:00.001-04:00

It’s amazing how a person’s path in life twists, turns and stretches into an entirely new direction. An unplanned route. A route that holds no promises of new beginnings or better beginnings, only, a beginning.

Last year, I began this blog where the premise of the story would be a window into the life of a family living with MS. My family.

I’ve been fortunate enough to have great family and friends who passed the word around, and I’ve had a great following made up of those who have simply stumbled upon Gracie’s Mum and offered encouraging words and praise.

I had a need to tell the Chapters, talk about the Monsters, climb the Hills and reveal the changes, twists and turns of our family and of the life we have lived this past year and discuss the life we hope to live in the years to come.

And telling the story has opened up flood gates of tears, repaired broken hearts, cradled old wounds and offered hope.

Hope that others were hearing me. That others were understanding and that others would spread the word about a disease that almost tore my family apart.

MS is a disease that almost tears many families apart. And somehow, we, the families, get up, dust ourselves off, find strength in each other and move on somewhat scared, somewhat jaded, broken and scarred but we move on.

We have no choice but to move on.

I resisted the inclination to let MS define me. To say “no, I can’t, I have MS”. I wanted so badly to say, “ I have to, I have MS, I have to go on. It will not beat me”.

In doing so, in adopting the Adapt or Die mentality, MS has defined me. I’m Grace’s mum, but now I’m Gracie’s Mum and the pressure to continue is now more tangible than ever.

When I began the blog I was not working, I was home recovering and the biggest task of the day, next to getting out of bed and my pyjama’s by noon was to write.

And write I did. Three times a week. It became routine, predictable. It gave me purpose, it helped me heal.

My goal was never to become the Mommy Blogger. My goal was to spread the word and open the window on a family’s enduring fight with Multiple Sclerosis.

Going back to work has limited my writing time, my time for family, friends, myself. The balance, the fine line between too much and not enough was and still is overwhelming. It’s impossible to think I can’t ‘do it all’ any more.

The idea, the words in black and white literally scare the hell out of me because one day in the not too distant future not being able to do it all will mean so much more. I may only be able to do less and less as time wanes on.

When you have Multiple Sclerosis or any other chronic illness it’s so easy to give up because the alternative seems so hard.

But you soldier on in spite of the pain and the fatigue and you accept the choice you have made.

I didn’t choose the easy route. I chose to adapt, I chose to go on. Head held high, arrogant as hell that this disease didn’t have me, that I was winning and that I was going to continue winning for my family.

But in order to keep winning for them, something had to give and schedules had to be reworked, adaptations needed to be made and time for rest needed to be increased.

So the posts on the blog started to retreat to a once a week rotation and now are sporadic at best.

It will now be a place to recharge and repair my broken spirit from time to time and for posts about personal triumphs and hopefully the occasional inspirational thought here and there. But mostly, for now, Gracie’s Mum will be a vehicle for updates on an exciting event in the works.

If the focus last year was to tell the story of how we got here, then this year will be about telling the evolving story of where we’re going.

Like many diagnosed with Multiple Sclerosis, my fears were rooted in the belief that I was destined to live the rest of my life in a wheelchair, having to wait for others to do things for me and to ultimately fade away in the background with no real purpose for anything anymore.

I couldn’t have been more wrong and I’m happy that those fears regarding limited purpose were unfounded and proven untrue.

I’m motivated now to persuade others to see MS differently and to become more passionate about finding a cure.

I’m hoping that my age demographic, and the young professionals and the stay at home parents, will see how similar yet how different my family is to theirs, and that they will recognize something must be done.

Typically, but not all the time, MS strikes a person in their mid to late twenties, often around the time they are starting a family.

They are new mums, new dads, new to a chronic illness that not too many people know anything about.

And they, and we, often feel isolated and very alone.

We feel robbed of the happy family experience as most of our day is about budgeting spoons and resting, napping, going to doctor appointments, having MRI’s and planning for the ‘next one’.

The next attack or relapse that might very well be worse than the last and that very well might put us in a wheelchair permanently.

We try to move forward embracing the time we have, the energy when we have it, and the rest when we need it.

But from time to time, we’re bitter that there are many more families that never ever have to worry about what we worry about and only think about a lack of spoons when the rest are dirty in the dishwasher.

It’s true that the face of MS has changed over the years. 30 years ago with no effective Disease Modifying treatments one inevitably faced a future that most often included limited mobility and pain.

Today, with the assortment of medications that exist, almost always there is one that will be effective for most, and living may resume.

For us, my family, it’s imperative that we keep the feeling of family normalcy alive.

We are working hard for all the other Gracie’s out there, whose families have been jaded, damaged, slightly mishandled by MS.

I know that this family, my family is not the only one out there.

I know that many of the thousands of faces of MS look like mine.

We’re not old ladies in wheelchairs.

We’re young professionals.

We’re friends, brothers, sisters, cousins, aunts and uncles.

We’re daughters, sons.

And in spite of it all, we are parents, first, and most.

We’re mum’s and we are dad’s.

Parents who coach sports, host birthday parties, host regular family fun nights, and on occasion family date nights with dinner and a movie ‘out in a real theatre with the real popcorn’.

We play, we teach, we sing, we dance and we laugh with them.

And one day, once in a while we’ll put it all on hold to rest, for a while, sometimes for days.

And we hope that the playing, teaching, dancing, singing, laughing and loving will hold them over until the pieces of their broken happiness are placed lovingly back where they belong.

Together.

In an effort to place the focus back on raising our families and not on the impending doom one faces when battling MS, we will be hosting a Play Date with a Purpose to raise money for the MS Society. (Credit to Sarah, for creating the original idea for the Play Date: here.)But more importantly, to raise awareness about those of us who fight this battle.

The families whose lives transition from stable to chaotic in the blink of an eye. The families that juggle work, PTA, sports practices, music lessons, homework – their own and that of their children-their own social lives and a chronic, debilitating disease.

We’re hoping that a young family with MS, can and will relate to any other young family and thereby creating an awareness that may not have been possible otherwise.

We want the world to see that the life of the individual when put on hold, affects the lives of all the family members.

The Public Relations class from the College at which I teach is helping me run the Play Date. The event will be a major project in their program. And it will be an eye opening and hopefully pivotal moment in their lives.

They are young men and women, embarking on an exciting career, and they will be helping me show the world, the new face of MS.

It’s the face of a young mother, a young father, a family.

We’ll be proof that we’re all in this together, and we’re having fun in spite of it.

Because in the end, all that matters is love and laughter.

With the money raised at the Play Date we hope that it will help raise awareness but also fund important research so that one day there will be a cure.

So that one day, the playing never has to stop.

Back to Start

2012-01-09T15:42:00.000-04:00

It’s hard to resist the predictable “new year, new me” post.

Hard, but not impossible.

I’m not in any way shape or form looking for a new me.

I’m still hoping to find the old me.

Even just for a day.

In the meantime, I love this me, just as much.

This me is one tough broad.

But never the less, with 2012 well under way it’s hard to not feel refreshed.

2011 was a pivotal year for my family.

A year that was not without setbacks, turmoil and big decisions that were all encompassing affecting us all.

A relapse, a postponed return to work, the selling of our home, the purchasing of another more accessible house that we have almost upon the first turn of the key accepted as our new home.

There were incredible strides in the advancement of this family too.

Adjustments to dosages in my Disease Modifying medications, changes all together in the type of medications and reducing the litany of drugs, period, to a more humane and manageable level have allowed for more clarity.

The weight gained from steroid treatments and the weight gained from being prescribed drugs I did not need to be on and weight gained from having to maintain a predominantly stationary lifestyle for months is finally coming off and I am returning to my former self.

Because I can move, I do move. It’s basic physics. (ok, maybe it’s not basic physics, I have never taken physics, but it sounds close enough. Don’t judge, just read)

Grace has started school.

She has fallen in and out of love with gymnastics and is gearing up to begin piano lessons next month.

She’s evolving.

She’s becoming musically inclined, taking even more interest in spontaneous dancing with me and urging Steve and myself to be more inclined in spontaneous singing.

She is constantly singing to herself, remembering lyrics to songs like no body’s business.

It was her idea to begin piano and she was flabbergasted when Steve surprised her with her very own real, big person sized, keyboard on Friday.

She’s already written her own tune, a lullaby in memory of a friend’s cat that had recently died.

Some folks shove spare Kleenex’s up their sleeve, Grace has no room for tissues as her sleeves are where she wears her feelings.

Steve has permitted himself to take time off from nurse, maid, daddy and husband duties, on occasion, and gone out and spent time with his new baby: the ’53 Dodge pickup that resides, for now, in our garage.

We are all back to where we’ve wanted to be, back to where we should be.

Steve and I don’t normally make resolutions for impending years, but this year we broke tradition and formally vowed to slow down.

What I think we secretly mean, is to start fresh, a new life that is as much as it can be with a chronic illness, normal.

This year is starting out with a workable schedule, we’ve learned and accepted limitations as far as MS and night driving go and we’re living with it. Not making due. Living with it.

We’ve adapted.

We’ve laughed more, sang more and danced a hell of a lot more in the past 9 days than we had last year, hands down.

It’s nice to be normal.

It’s nice to get back to a beginning we don’t mind starting. Again.

How’s your New Year?

Comfort and Joy

2011-12-20T19:38:00.000-04:00

Amazingly I’ve underestimated how difficult it would be once I returned to work to juggle the efforts of a successful career while maintaining an efficient and orderly household and care for a young child now in school, all the while adjusting to this regime with MS.

The MS I didn’t have 2 years ago.

Something had to give, and unfortunately it was the blog.

Although it was not for lack of trying it’s been a month, to no avail.

An entire month without a post.

Sad.

Because there has been plenty to write about, plenty to say.

But time was not of plenty, and the common theme to several posts leading up to now have been about the schedule we’ve been trying to maintain.

But as we wind down this year and approach Christmas celebrations we’re reflecting not only on the recent Christmas school concerts, the wonderful report card, the annual trip to the ballet to watch the Nutcracker, the perfect dentist checkups and the not so wiggly as once thought tooth, we silently reflect on the ‘remarkable’ progress report of my 6 month neurology check up, how well I’m tolerating the new drug and a future that now seems bright where it once was dreary.

Christmas always brings out the reflections, doesn’t it?

How lucky we’ve been this year, or how sad we’ve been this past year, how at this time we miss those who always seemed to make Christmas more Christmassy.

Like Gary, Ray, Gail, Marion and Betty. Nanny, Grampy, Pearl and Jo.

And the family members with whom relationships are now and have long been strained or damaged.

To the friends who have survived cancer, survived spousal separations and embark on a first Christmas where everything has changed.

And the new babies, and the babies whom we are awaiting arrivals.

It’s going to be a great holiday for us, surrounded by our families and friends and the warm, wonderful memories of those now gone, and of those from whom we wish were closer.

We’re keeping it, this year, as simple as convention will allow.

For years we’ve been pleading with friends and families to tone down the material gifts and notions and to focus more on the celebration, the goodness of our relationships and to take some time to just sit surrounded by food and drink.

We’re getting there.

Dianne, Steve’s mom flies from Toronto on Thursday to celebrate Christmas with us. My parents, brother, his girlfriend and my sister arrive on the 29^th for New Years celebrations.

Yes there will be gifts, but there will be so much more.

There will be a tree that took 3 hours to get the lights just right, and the timeless pondering of why exactly we, as a society, see it as perfectly acceptable to cut down a healthy tree, to stick it in our living room for two weeks.

And of course there will be the endless ongoing quoting of National Lampoons Christmas Vacation.

There will be the age old shortbread recipes from both my mum and Steve’s mom, now combined to make quite possibly the best shortbread in the world.

The chocolate advent calendars that lose their appeal by the 15^th or so and then end up being gorged on 6 or seven days worth of chocolates at a time.

The arguing with Steve over why the cats deserve a stocking too.

The last minute trips to the mall, grocery store and liquor stores, only to get home and realize we forgot something we just can’t have Christmas without.

And all the while, we’ll be together.

We’ll remember the years of Christmas eve parties at Dianne and Gary’s, Steve’s parents, with the older generation causing the house to be sweltering with the need for the heat to be on and the fire ablaze.

The aunt’s Marion and Betty who brought back and kept alive the glitziness of a ‘50’s Christmas with their overly decorated parcels and pink sparkling wine.

Steve’s French Canadian grandfather, with his chain smoking, stiff drinks and hands stretched out to grab your face for a double cheeked kiss.

The buffet following Midnight Mass, famously referred to now as the midnight buffet, at my parents’ house, where whomever went to mass was greeted by those who abstained to make a hearty late night meal consisting of appetizers, meat pie, and ceasars heavy on the Christmas cheer.

We’ll remember with warm hearts Christmas 2001, the first without Gary, but the year that inside an ornament box lay a square velvet box, with the most beautiful diamond ring inside.

We’ll remember Christmas 2006, Grace’s first and how she slept through it all.

We’ll remember Christmas 2010, the one we thought we’d never have together, the one we thought would be taken from us too soon.

We say Merry Christmas here, not to impose our views or beliefs on others, but because that is what we celebrate. We are not a religious bunch here, but we believe in the goodness of the season and the sentiment it brings.

So to those of you reading right now celebrating another occasion, holiday or reason, enjoy!

And hopefully you will be enjoying it all with the ones you love.

All the best for 2012!

For You

2011-11-24T10:03:00.000-04:00

Song of the Day: True Love Ways - Buddy Holly

So, here’s the thing: one day, a year and half ago, a doctor looked me in the eye and told me I had MS.

He could only be seen with my left eye as the right one wasn’t working.

Because of the MS fog, the shock and the recovery that follows a brain biopsy, I really didn’t absorb or react in any particular, hysterical way.

I was stunned.

And selfish.

Inside I immediately began grieving the things I thought I would lose.

The freedom of coming and going as I please.

Walking.

At the point I was told of my diagnosis, I was already bedridden and on week 2, going on 3, of what would be and 8 week hospital stay.

I didn’t think my future looked very good at all.

Sitting beside me, another person received the same diagnosis.

Steve.

With broad shoulders and breaking heart he absorbed what I couldn’t, made strategic plans for my recovery, contacted my boss and made plans to get my disability insurance application going, called my parents and his mom to arrange for child care and then called his boss and arranged for a leave from work to be by my side so he could be there to make sure all would go well, the best it could, as if I was running the helm and in charge.

Leading is something I like to pretend I’m good at, but I’m really just bossy.

Steve, he’s a born leader.

It was him that held this family together while I fell apart. It was him that held it together as I picked up the pieces of what was and what could be me.

And it is him that is the safety net now.

And it is for him, and all the other caregivers to those of us with MS that I am shouting out to today.

I’ve had several meetings with the MS society as of late regarding a project I am proud to be part of, along with Sarah.

We are focusing on an initiative that would provide more support for families, specifically the parents, who have MS.

We strongly believe that the overall quality of life of the child is permanently affected by the impact of MS as a chronic illness.

Time is forever being taken from the child and the family.

If you are fatigued, you can’t race around town to hockey, swimming, soccer or gymnastic practices.

Parent teacher interviews, school plays, book fairs, PTA obligations and any other school related volunteering opportunities are impacted and thus so too is the experience of the child.

Children can and often do become resentful of the ‘excuse’ that mum/dad is just too tired today.

So the other parent, the not ill parent, picks of the slack.

On top of all of the other responsibilities, the work obligations, the household obligations, they then have to fill the shoes of someone else all the while maintaining an impossible sense of equilibrium.

You better believe that this impacts the child.

Now, not only is one too tired, too sore or too weak to participate, but now the other is on the brink of emotional and physical collapse as well.

But what can we do?

This is our life and we don’t have the choice to either like it or leave it. We all know that the other would change places in a heartbeat and vice versa, but that’s not an option. So what do we do?

Crying is always a viable option, though it grows tired after not too long.

Getting angry works too, but again, it doesn’t really sustain the familial sense of being that one is looking to achieve in the first place.

Well, I can only speak for myself, and say that I put fingers to keyboard and fought like hell for my family and others like us.

So that one day, Sarah can sit down, have a nap, and maybe a martini and know that it, everything, will be ok if she does sit down for more than a minute.

So that one day, Steve will get to work on the car again, in his garage, that can be fixed all the way he wants, because there finally was money left over not earmarked for medical treatments or household modifications.

So that one day, Grace won’t be reminded of what it was like to miss out because mummy’s tired, weak or sore.

So that planning for the future doesn’t have to revolve around the uncertainty of disease progression.

So that daydreaming of dancing at our children’s weddings involve dreams of actual dancing, not wheeling.

And maybe in my lifetime, there won’t be a cure.

But maybe in the meantime, there will be hope and help.

And lately that hope seems all the more possible. There will be hope, and help and all from those like me and Sarah.

Parents, just like any parent, wanting the best that life can offer our children.

The best for our families.

For the Sarah’s and the Steve’s of the world, this one’s for you.

Courage

2011-11-09T15:41:00.000-04:00

I was reminded of a quote the other day:

Courage is resistance to fear, mastery of fear, not absence of fear - Mark Twain

They are powerful words.

They are words that speak the truth of everyone and anyone living with a chronic disease.

The unknown can be just as powerful and thus producing a level of fear that is almost certainly tangible at times and definitely tangible at others.

To confront your fear is as simplistic a task as getting out of bed in the morning, because the day before you may have been afraid to fall.

From the rudimentary to the impossible, there are things in life worth being afraid of, and it is the way in which the fear is handled I consider most notable.

When every day I’m reminded of what scares me.

When everyday a little piece of me is lost, like my night vision and ability to drive after dark.

Like last night, when thank god Steve was there to help and take Grace home from gymnastics so that I wouldn’t have to worry about crashing the car with her in it.

The point in which I confront the fear of losing myself, is still such a long way away. If it is a destination that is at all, one that is reachable.

I know that it is entirely possible that I will one day live life in a wheelchair, or with incredibly impaired vision or cognitive ability. That the world that is for the most part accessible to me now, will one day close most of the doors to the world I would rather live in.

However, I am courageous nonetheless, because for now, I am happy in knowing where I stand, as long as I continue to stand, to see.

I take comfort in the fact that I have at one point mastered my fear.

I put one shaky step in front of the other once, and I’ll probably have to do it again.

But like anything else, I as well as my fears, evolve.

Because so too, does my Multiple Sclerosis.

As I turn 33 years old this weekend, I will love myself a little more than I did last year, because for all the degrees and diplomas I have earned, the one I hold most dear is my Masters in Fear.

Stand By

2011-11-06T14:15:00.000-04:00

We're busy, busy, busy here and I'm on the verge of so many topics to write about that I don't want to rush it and produce something I wouldn't be happy with as far as a written product goes, so I'm asking you to stand by and wait for me to share the goings on and happenings in our life.

It won't be a long wait and I'll post soon this week!

©2011 Gracie's Mum: A Story Of A Mum With MS

The World in Words

2011-10-30T13:47:00.001-03:00

Song of the Day: Helena Beat - Foster the People

Trish once posted that as a photographer she sees the world in pictures.

Although I don’t consider myself a writer per se, I can relate to Trish in that I see the world in words.

As long as I can remember there is often an aside going on in my head recapturing in words an event going on around me.

Like the Hills post, the Monsters post, and the Like a Hurricane post, most recently published on Keli’s blog.

And although, many times there is nothing remarkable about my sarcastic mind bantering with itself, I take pleasure in formulating in black and white, ahead of a blinking cursor, the strewn together moments of the day, week, month, year or life that has inspired me.

This week was of no exception.

There was a lot going on from the mundane to the extraordinary and all was elaborated upon in my head.

An otherwise slow week as far as major issues on the MS disease progression front, there was a lot going on MS-wise nonetheless.

I received an email on Thursday from the MS Society with regard to a meeting I had had earlier in the month where the discussion focused on some initiatives I was mulling over and how to make them come to fruition.

Some grant money may possibly be made available to expand on one of the ideas we had discussed and they have asked me and Sarah to help in the work of putting together the grant proposal and to think about championing it and possibly leading the project if and when it is approved.

Pretty cool huh?

As more information is learned and as more development is made, I look forward to sharing with you its progress.

Because the project is in the early planning stages, I’ll leave the details private until there is more to write about, but the project will help parents who have MS.

A cause both near and dear to our hearts.

On Friday, oddly enough, I received a message from Sarah congratulating me on an article about me and

Grace in the MS Society Newsletter.

Seeing as I am terrible at regularly checking the mail, and by regularly, I mean close to never, I hopped in the car, and drove down to the mailbox. It was dark, freezing and I was only in my yoga pants and sweatshirt, and as I fought with the key and the lock in the dark, the air getting thick with swears, I then realized that I had the wrong box, so I fought again with the right box, all the while not being able to hold back my excitement to see what was awaiting me.

The front page of the MS Society newsletter, with a full page article inside, was in there with the subject being Grace’s Cupcake and Lemonade Stand to End MS she had held in September.

I quickly called my parents encouraging them to hightail it down to their local MS Society chapter office to grab their own copy when to my surprise my dad had figured out how to download a PDF right off the MS Society website and was reading it already!

I then posted my excitement all over Facebook and twitter and received some of the kindest words of appreciation and encouragement from friends, colleagues and coworkers.

It was a great way to end an otherwise normal week.

And by normal, I mean wonderful in its normalcy.

It was a week of last minute preparation for my new Travel and Tourism class beginning on Monday. It was a week of planning, organizing and falling into a nice step with our new routine.

Normal.

A word I never would have thought I’d use to describe my life again after the year that 2010 was.

But it’s back.

It’s back and instead of being unappreciative of all the hard work that went into achieving this long sought after state of mind by not only me but by almost everyone I know, I want to throw myself into making it a state of mind more easily achieved by others with Multiple Sclerosis.

Especially parents with the disease.

As the role models for our children, as the backbones of the family, parents have to remain strong, lucid and ready for anything.

We also need support, more so than most when dealing with a chronic, painful, unbalancing disease.

My life unraveled in April/May 2010 as I fought to understand what was happening to me all the while being an inpatient unable to go through the motions of something as simple as being a parent who is at home and able to tuck their small child into bed.

It was tough psychologically and physically and I would never want to know that another parent felt so helpless.

So, in an otherwise wonderfully normal week, extraordinary things happened and to be a part of them, is just so rewarding.

Cliché warning: I had said in a recent status update on Facebook that MS may have been the best thing to have ever happened to me. What I meant was that prior to MS, I was selfish and arrogant, rarely thinking of others.

And although most of that is still true, I am selfish and arrogant, and my sarcasm rages out of control most of the time, I now feel a compelling need to make a difference.

And, mainly because, selfishly or not, there may come a time when I can’t help myself let alone improve the lives of others.

But I do want you to know, that I do appreciate the recognition received for just being a mum, wanting to help other mums and dads, like me and often that recognition is enough to propel me forward in spite of the pain, numbness, fatigue and frustration that is a life with MS.

Thank You!

Thank you

2011-10-25T22:56:00.002-03:00

So I had a feeling I was about to move past the 10,000 page views mark and being vain I peeked at Gracie's Mum before going to bed and low and behold, sure enough I was over the benchmark I had being yearning to blast into oblivion.

I credit this final push to the land of five digit page viewing to a recently unbeknownst to me Canadian website savvymom.ca.

Savvy Mom had placed me, alongside some of the current best Canadian mom blogs and with that honor brought an influx of late night readers.

So, pay a visit to savvymom.ca, tell them I say thank you, thank you, thank you, and stay a while with Gracie's Mum before going off to bed.

Thank you everyone, for making a pretty good day, even better!

©2011 Gracie's Mum: A Story Of A Mum With MS

Forget Stella, This Is How WE Got Our Groove Back

2011-10-24T09:24:00.000-03:00

Song of the Day: Mountain Top - Bedouin Soundclash

My nerves were on overdrive this week, palms were sweaty in anticipation of some majorly huge mess up that I assumed would happen regardless of the endless preparation put into getting ready for my first day back to work after a year and a half hiatus.

Add to that our after school babysitter that had been secured for the past two months bailed on us at 3pm on Sunday.

Add to that Grace falling and splitting her lip open at 6pm Sunday.

After several phone calls to friends and neighbours we secured a babysitter and with icepacks, a warm bath and a liquid supper, Grace was put to bed, with albeit a swollen lip but, without any trips to emergency.

And five a.m. Monday morning came, well, early.

My lesson plans were ready, reread and reread again. I knew it all. The class arrived on time and ready to learn.

After several trips to the bathroom to check my makeup, outfit and hair for the inevitable explosion of frizz on what was a very rainy day, I was ready to speak, to inspire, to engage my students.

But they had left their personalities at home.

After several, never failed before, strategies to energize my audience I realized, that my efforts were in vain.

By the end of the first day, I started to question whether it was me or them.

Had I lost my groove? Probably.

Would I get it back?

???

I knew at this point, that it was going to be a long week.

Wednesday was my appointment for my monthly MS Disease Modifying Drug therapy.

In a suit, with briefcase in hand I hunkered down for 2 hours of intravenous drug treatment with the intention of working on lesson plans.

I enjoyed my Starbucks Chai Tea too much and instead became engaged in conversation with another patient about her Greyhound.

Fortunately Wednesday ended better than it began seeing as I spent the wee hours of the morning whimpering about being too tired to do this.

Too tired to keep the house clean, the laundry done, the grocery lists and weekly menus in order, the lesson plans in check, the students engaged, the appointments met, the gymnastics and swimming lessons obligations kept, and find energy to talk to Steve and Grace about our days.

An impending sense of doom finally made itself known to me come Thursday evening and the butterflies had completely taken over my guts on Friday as I prepared to speak in front of a crowd that was1400 people strong at our annual graduation.

It had as suspected, been a long week and any and all reserves of energy had been blown and I was convinced I`d fall down, wet myself and engage in a full on ugly cry in front of everyone.

Thankfully that didn`t happen.

Minutes before standing behind the microphone and in front of all those people and my grads, the butterflies frigged off and I became me again.

The confidence, the arrogance, and the pride in the fact that I did it, did my job, and did it in spite of all the B.S. and torture that MS puts me through mentally and physically every damn minute of every damn day, came flooding back to me.

I did it and I won.

So I’m sitting here waiting for an epiphany of words to come flooding from my brain to my fingers to my keyboard about how this past week had been and it hits me: amazing.

Amazing for several reasons.

Grace read three books this week, I went back to work, and I overcame a powerful sense of stage fright I had never before experienced. The routine, although not without some minor flaws, pretty well fell into place and seemed natural, the house wasn’t tidied every five minutes but nobody died because of it.

Now if that isn’t an amazing week, I don’t know what is.

And as usual the backbone of the operation was the understated hero of the family: Steve.

And as usual he performed with a calm sense of readiness for the unexpected.

And that used to annoy me to no end.

More opposite in stressful situations we could not be.

I freak out while he maintains a calm almost `should we check for a pulse’ sense of serenity that makes you want to just scream because you’re annoyed that you can’t be even a little more like that.

But it works, and it worked great for us this week.

I never would have been able to appreciate the efforts that went into making this week a success if I hadn’t been inspired by his energy to calm the hell down.

I would have missed the momentous milestone that is your child reading, on their own, for the first time.

Grace read for the first time this week.

Like actually read. Like, read for real.

Sounded the letters out, used her pointer finger to help her follow the words and strung together sentences like nobody’s business.

And it was so amazing! (The exclamation mark is here for emphasis, but also because it has become Graces favorite punctuation. She spells her name with one now, because, I mean, come on, doesn't your name sound better with an exclamation too!)

When I’m on the brink of conceding defeat to the craziness that is MS, I will draw on two things for inspiration to move forward: Steve’s calmness and Grace’s tiny voice reading with that creeping up grin on her face when she knows she nailed it.

And this week was the ! on the sentence that is our life, and this week was how we, not only me, got our groove back.

If you dig deep enough or even if you only look around the room you’re in, there is something, powerful, meaningful and profound that will get you through your day, your week or even for some, help you find your rhythm.

Draw on that and have a great week!

P. S. A Happy, Happy Birthday to my sister Janine!

No Promises, Just Ready

2011-10-16T11:40:00.000-03:00

Songs of the Day: Promises, Promises - Incubus/ Helena Beat - Foster the People/Centerfield - John Fogerty

Tomorrow is a big day.

Huge.

After 19 long months, I’m heading back to work.

19 months to the exact date that I lost sight for the first time in my right eye.

It’s been a road of twists, turns, hills and sheer drop offs, brain biopsies, spinal taps, and intrusive treatments, intensive rehabilitation and terrible drug reactions but a road that has been resting comfortably in plateau for about 3 months now and I’m ready.

The final goal on my list is about to get checked off and my life will be reclaimed.

And the butterflies are starting to take over valuable territory in my stomach.

There is plenty of reason to be apprehensive, anxious, and well, terrified.

I've been here before. Briefcase packed. Outfits ready. Relapse.

That was eight months ago.

And what if I can’t do my job?

This isn’t a desk job where I can sit down for 8 hours. This isn’t a job I can do comfortably from home in yoga pants and a hoodie. This isn’t a job where I can call in sick at any given moment.

No.

I’m a college instructor that teaches standing up right. Walks around the classroom, runs around to the photocopier room and back again. Often in heels. Often in a suit. And to call in sick, means a substitute needs to be found. And this isn’t high school. There is no bank of teachers waiting to be called upon at the last minute.

I am the Travel and Tourism department.

And yes although there are a few very well qualified instructors to teach my classes and who have filled in for me before, they also have their own classes to teach that often run concurrently with my own.

And, what if I can do my job, but can't handle it with everything else?

Can I really be a wife, a mum, a daughter, a sister, a friend, an instructor, on the PTA, fund raise for the MS Society, AND manage my MS?

There are fleeting moments when even my most arrogant self can't compete with the terror of failing.

Deep, deep breath. Do the Tree Pose, and move the hell on.

This week, as part of my gradual return to work, I am teaching a week long class designed to be an orientation for new students.

I’ve taught this class several times and love it.

I think I love it because of the control I have over the students’ first impression of the body of instructors they will have in the year or years they will be students.

I am committed to providing them with a fun and informative, but realistic point of view of what this new phase of their life will or could be.

I am the very first instructor they will have.

The first instructor some of them have ever had outside of high school and for some, in years and years.

I have to be good and on my A game.

I slip up and give them a bad taste and then their entire outlook on school will be faltered.

Also, if MS takes over and bullies me into a realization I’m not prepared to own, it’s back to yoga pants and hoodies for me.

That’s two scenarios I can’t allow.

Tomorrow I must immediately empathize with the students’ position. With the decision they have made.

To go back to school, to go to school at all, to make the decision to create a list of goals that will shape the outcome of the next little while of their lives, is huge.

It is exciting and full of promise.

It is terrifying.

And I can relate.

And the 16 of them and me will get through our first week together.

The most beautiful part of this week, is that on Friday our school is hosting its annual graduation ceremony and my girls that I had to leave too soon will be graduating. I saw them start, and I’ll get to see them finish the journey they worked so hard to complete.

And I can relate.

The outfits are lined up, and the briefcase is here beside me, notes finished, pens, highlighters ready to go.

Tasha asked me the other night if I was nervous.

Yes. I wasn’t when she asked, but now, oh god yes.

But if ready is a state of mind or if it could be tangible, then I am ready personified.

Thankful for Eight and Five

2011-10-07T10:47:00.000-03:00

October 4^th is a huge day in our house.

On that date in 2003, Steve and I were married.

On the same date three years later, Grace was born.

This is probably my favourite week of the year because the 4^th kicks off the countdown to (Canadian) Thanksgiving, which next to Christmas, is my favourite holiday.

With two important dates that celebrate the start of two lives: my life with Steve and the birth of Grace it would be pretty hard to not be thankful.

For the past 5 years I’ve marvelled at how many stars needed to be aligned in order for us to celebrate one important date.

Eight years ago when deciding on a date for our wedding, the choice was easy. We wanted an outdoor October wedding and in the area of Ontario we lived it wasn’t that crazy of an idea. The only thing was that Thanksgiving is always the second weekend of the month and we, at the time, didn’t want to share our anniversary with anything and the weekend after that would b e pushing the cool autumn air too far to still provide us with the colours we were pursuing.

So the 4^th it was.

Three years later, after being dilated and in early labour for seven days, Grace was born.

She was due on the 6^th, then a change of dates to the 3^rd and then with early labour she had several other dates in which she could enter this world, but the 4^th it was.

It is definitely meant to be.

After days of preparing, cooking, decorating, and pumpkin hunting, I’ll reflect on the people that make my life worth living.

And it is for them that I am thankful.

Always.

Happy Thanksgiving!

©2011 Gracie's Mum: A Story Of A Mum With MS

Round One

2011-09-26T09:57:00.000-03:00

On Wednesday I went for my first round of the new monthly treatments for my MS. This particular disease modifying drug is administered via intravenous infusions that take up to an hour followed by a one hour monitoring period.

I was told to bring someone with me for the first one, just in case of adverse side effects that would prevent me from driving.

Having done a lot of research about this drug I was both fearful and excited in the days leading up to my first infusion.

The big scare is the possibility, although slight in its chance, of contracting PML. A fatal brain infection. I have had pre-screening to see if I carry the virus known as JC which increases my chances of contracting PML. I am not currently carrying the JC virus, which is a virus we all carry from time to time throughout our lives.

Although PML could be fatal if not caught in time the scary part is that the symptoms of PML are pretty much the same as the symptoms associated with MS that I live with on a daily basis. Therefore, I must remain extra vigilant of the way I’m feeling.

Paranoia overload.

When I was first diagnosed in the hospital, the doctor recommended, because of the type of MS that I have, to go on this particular drug, because like my MS, it too is aggressive. But, even then, the little I knew about the drug kept me from going immediately to the second line of therapies and sticking to the first line, somewhat safer, drugs. And unfortunately though the drug worked, it, as you know, made me sick in other ways.

The upside is that my new drug is reported to be nicely tolerated by most and has even been noted to decrease the severity of some symptoms.

It’s only been five days since my first infusion and I’m happy to report there haven’t been any negative side effects and although I have experienced some minor irritations like dizziness, nausea and fatigue, I haven’t been prevented from doing anything.

So we’re going with the flow as far as this new therapy is concerned.

Wednesday morning though, brought on a familiar perspective that I wasn’t eager to have back.

Since Steve took the day off to accompany me to the appointment, we were both able to drop Grace off at school.

Keeping with our stance on making sure Grace knows what’s going on health wise with me all the time and in doing so, sparing her of too many gory details, she did know what was happening that day. I had briefed her teacher about what was to go on, and had co-ordinated with Lenna for Grace to take the bus to her house after school and that way Grace could play with her friend Danica and hopefully keep her mind of what was really happening.

We are sensitive to Grace’s feelings when it comes to my health. Her introduction to MS, like mine, was to see me rushed off in the middle of the night to the hospital only to come out, with a cane and a brace, eight weeks later.

MS, scares her to death.

So, although she knew I had a doctor appointment, Steve being with us, not in work clothes, and taking me to the doctor, sent her reeling.

She knew something more than just a doctor appointment was happening. And the fact that Steve was home, sent up alarms.

We parked the car at the school and walked her to her class line up.

We kissed her good bye and wished her a fun day.

I’m glad I looked back, and I’m still kicking myself for looking back.

I don’t know if it’s because she saw me look or if she was already in motion, but she was running toward us.

Tears in eyes, arms stretched out.

She pleaded to come with us. I think because she needed to know that nothing was going to keep me from coming home again.

We walked and talked with her back to her line. She was so upset but nothing would comfort her. She looked so sad, so vulnerable in her jacket, skirt, knee socks and with her lunch box in her little hand.

So small. So sad. So scared.

And then, her little friend X. came to help her get to class. He held out his hand to take hers and said that he would help her, and that everything would be alright. He’s five years old.

The bell rang and she went, hand in hand with him. In a sea of kids, he found her and he knew, somehow, he would be able to do what we couldn’t.

I swore that no tears would be shed this day, because I would be stronger than this drug, but my god, the power of this little girl, this little boy, and how much life has already been lived in Grace’s 4 almost 5 years.

There is no justification for having this little girl carry that much weight of concern on her tiny shoulders.

I vowed that in the afternoon after she was picked up from Lenna’s that I would be fine, I would act fine, I would assure her through my presence that I would be fine. Because she needed to know that I wasn’t going to leave her again.

So far so good.

Hopefully, next month, and the months after that, will be better tolerated by all.

Crossroads

2011-09-18T14:43:00.000-03:00

Song of the Day: Feel It All - Feist

I'm taking advantage of my favorite season: Fall.

The leaves are changing, the house is decorated with pumpkins, leaves and scarecrows.

New schedules have started to take shape, long sleeve shirts, sweater jackets and flannel jammies have all eased their way out of the way back of the closet.

And today as the three of us planted a bed of bulbs, that will in six to seven months signal the dawn of spring and another era, I contemplated the way things have been over the past few months.

How, right now, like the change of the seasons, I too remain on the brink of something new.
It’s been 7 months since my relapse and 2 months of being drug free in preparation for the switch to a new, more powerful, somewhat more risky but probably better tolerated disease modifying drug.

And I feel great.

So good in fact that I’m dangerously debating with myself, Steve and medical personnel about staying off drugs indefinitely.

The consensus is that with my MS, any drug is better than no drug.

And for one more week, I remain at this crossroad, this impasse, the time between the right now and the what's next. The choice has been made, and the path to feeling better, to stay feeling better is marked with once monthly infusions.

We hope.

We hope it’s that easy.

We don’t forget all the bad that the last drug did to me, to my liver, to my lady garden, to my stamina but we, like with everything else, move on in hopes that we can keep on feeling good.

I’ve been walking regularly over that past few weeks and my hike includes 4 hills in each direction. And I’m dead tired by the time I’m done the hour trek that I walk at a surprisingly vigorous pace. But after only a brief stretch and cool down period I’m ready to go again. The fog has not rolled in, the leg is not wobbly or weak or dragging or being spiteful of my resilience. It’s being an equally contributing member of Team Me.

And my team then carries on the everyday litany of jobs, chores and errands that becomes the life of the stay at home mom/housewife. A role with implications that I had despised and resented until lately when I realized that all the requirements to fill this role are innate qualities of my natural born personality.

Organization, planning, preparing, focus, drive and commitment.

Who would have known?

Anyway, two months ago, there would have been no way I would have been able to remain this functional with the stress of the past two months. The move, the first weeks of school and the change of medication, two months ago, would have thrown me so far off course I’m almost positive that I would have been in the throes of a relapse by now.

But I’m not. I’m fine. I’m planning like no body’s business. Planning new fundraising initiatives, planning on joining the PTA, the School Advisory Council and volunteering at Grace’s school when needed. And I’ve cracked the spine of my books again after an 18 month hiatus from graduate studies.

And yes, the outfits are planned already for my first week back to work.

October.

I’m going back to work in October. Come hell or high water, I’ll be back to work in October.

And then I panic. Just a little.

I’ve been here before.

Relapse.

But things were different then.

I didn’t own the MS then the way I do now.

Since then I’ve learned so much. Fatigue management classes, yoga, better eating habits, more exercise, less drugs, pills and injections, more reading, more talking to others with MS and I have now therefore been reformed to the point I almost every time try to see the positive point of view first.

And I’m not being negative now.

I’m scared.

Terrified actually.

Petrified that I will leave my family again. Maybe this time for longer.

On a recent walk, on my last incline, tears started to roll. The hot and stinging kind. The kind you hope to hell no one will see as you sweat your way through the last half kilometre to home. The kind you finally allow yourself to shed as you shut your front door, slide down to the floor and weep all over the tiles.

The tears fell for all that has been accomplished in the last 18 months and for all that could be lost in the blink of an eye.

The tears fell for all that I want to hang on to, and to never lose again.

They fell for the fear of having to put that frigging brace on my leg again, to have to walk with a cane again or god forbid, sit in a wheelchair again.

They continued to fall for the fear of spending one more night away from my family. For spending one more day in a drug induced fog. For missing parent teacher interviews, holiday concerts, school trips and volunteering opportunities. For missing work, for being on disability forever and for never being able to be me again.

And this fear is there every day. Not all day, but it’s there. And it’s most tangible when I actually catch myself letting go and planning for the future. As if to slap me in the face and say what are you crazy? You have MS. Do us all a favour and stop planning, you’ll never win. You’ll always, always lose.

It’s hard to be positive when you not only have that voice in your head but you also have MRI scans to back it up.

I have MS.

I will always have MS.

But I have a beautiful family and an amazing group of friends.

And it is for them that I will fight.

And it is for me and the rest of us with MS that I will win.

Every time.

But I’ll learn to take more Kleenex and wear darker sunglasses with me where ever I may go.

Just in case.

‘Cause you never know when the ugly cry is waiting for its chance to be seen and heard.

First Days

2011-09-08T08:40:00.000-03:00

Song of the Day: You Are My Sunshine - Ray Charles

In the editing process of this post, I’ve teared up several times. Not out of sadness or melancholy thoughts, but more out of pride, and hope because this post is about my daughter, the daughter I helped bring into this world, the daughter I helped raise up to and including this point and it is amazing that someone that has been in my care, of my responsibility is deserving of so much praise and of such rave reviews.

I know we’ve done a good job. I know we will continue to commit such dedication. I know the future for her, for us, is bright.

The week leading up to the first day of school was intense.

Not only for how busy it was with all of the organization and preparation involved leading up to the big day, but also too for the fact that we’re just busy people and usually take on a lot more than we have room for on our plates.

But amidst the chaos I would find myself becoming reflective and thoughtful about the previous 4 (almost 5) years.

The first time she clasped my finger in her teeny tiny hand. The first time she smiled what was most likely but still meaningful gas induced smile. The first time she ate my homemade baby food. The first times she rolled over, sat up and crawled.

The first steps have always stung my heart (and do still as I write this)as they were taken at day care and someone else’s mother got to watch my little baby girl toddle across her kitchen floor while I toiled away peddling travel products for 8 hours a day, not including the 2 hour round trip commute each day.

Ever since her first words, Grace has been wonderful with the gift of the gab. She’ll tell stories, made up and factual about the goings on of her day and the world around her.

She is giving and she is kind, considerate and compassionate toward others and on her way to being even more socially aware. She has participated in many of my fundraising efforts for Feed Nova Scotia and for the MS Society and has done so with gusto and dedication.

At first she’s shy and clingy but only for a brief moment and then when the ice is broken she often steals the show with her charm and enthusiasm.

She’s hot tempered too, and sometimes lets her emotions get the better of her and get her into trouble.

She frustrates easily, only because she exhausts herself in her never ending quest for perfection. She’ll often not paint, draw or colour for days because she allows the discouragement felt from an earlier attempt to leave a bad taste in her mouth but then out of nowhere she’ll allow herself to try again, getting it perfect in her eyes.

She’ll never know, until she’s a parent, how perfect it is anyway when the colours find themselves outside of the line.

She remembers everything. Everything. And she’s amazingly detail oriented for a 4 (almost 5) year old.

She’s a thinker, a contemplator, and is often found deep in thought.

She bottles in a lot too, never complains about sores, owies or most recently, what had to be a very painful UTI and we’re often left playing detective and following the signs of behaviour changes.

She detests transitions and in the last year and half there have been lots of transitioning. She worries I’ll get sick again, that something will happen to Steve and she vocalizes often her disdain about what she has missed out on by not ever meeting papa.

She loves her girlfriends and cherishes her times with all of them but has never asked about having or wanting a sibling.

I believe she is happy. I know she loves us and the cats and her own bed. I know that her grandparents are on the highest of pedestals in her mind and rightfully so as she is in theirs.

She’s funny, often cracking a recently heard joke or trying one out on us.

She loves gardening with me, and garaging with Steve.

She is happiest, most relaxed, more at ease when a good song is playing in the background. She loves all music, but her favourite is good music, meaningful music, music with soul. As an infant in order to be settled while harnessed safely in her car seat, facing the rear, unable to truly see what was going on, she would seek comfort in a song. “You are my sunshine” by Ray Charles. And her love of R&B was born. Now on car rides she requests songs by name, sings along and has broadened her interests to the likes of Buddy Holly, Bo Diddley, and more contemporary artists such as Blue Rodeo or Joel Plaskett.

She is the leader of spontaneous dancing in our house.

She gives the most amazing hugs in both good times and bad and she is often the first person to bring a Kleenex to someone with tears needing to be wiped.

She knows what it’s like to have an ill parent, a parent who has to undergo treatments, a parent who goes away to the hospital in the middle of the night for an unknown period of time.

She hangs on to us a little more tightly then most kids her age, but she knows the meaning of living moments like there is no way of knowing what tomorrow will bring.

Her smile can light up the darkest of rooms.

On Tuesday, the three of us walked together to school for the first time. Her body language and her face told us she was excited but nervous, anxious and a little bit intimidated but not scared.

In a sea of children and parents all we saw was Grace and even though the tears made their way to the lower lids of my eyes, not once did they fall, for I knew she was going to be just fine.

And so was I.

It was a new beginning, the end of an era, a day to be remembered and cherished alongside the others and unlike the first steps, I was here for this one and I breathed it all in.

She’s a schoolie now, and she is ready.

The Sweet Taste of Success

2011-09-05T15:50:00.000-03:00

Song of the Day: Pop Goes the World - Gossip

It's been super, crazy, insanely busy around here.

Grace is starting school this year for the first time ever, and with all that comes the shopping for clothes, the shopping for supplies, the planning of lunches, the new hair cut and my lamenting over the passing of the precious baby-toddler years.

On top of all that, in the middle of all that, in spite of all the moments of near public weeping, was the cupcake and lemonade stand Grace and two of her best friends held in an effort to raise money to End MS.

The event had been planned for months, schedules were coordinated, signs were made, flyers were hung up in local business establishments and hundreds of cupcakes were made by us and donated by many.

We held the stand at the end of our street, set up a table, an umbrella, a cooler and set out to enjoy what has been probably the most beautiful day weather wise yet this summer.

In two hours, selling cupcakes for only 50 cents, three little girls raised pretty near $200 for a cause close to all of their hearts. Money that will be divided and put toward their ultimate goal for fundraising in May's MS Walk.

Accompanying Grace was my god daughter Cadence and her sister Norah. Taking beautiful photographs of the event was my fabulous neighbor Jenna. In addition to our own other cupcakes were donated by a former neighbor Rhonda and by Kevin and Tasha. Neighbors new and old passed by the stand during the 2 hours generously donating money for our cause. Friends that we haven't seen in years visited, with new baby in tow. And a puppy, that was as deliciously cute as the cupcakes themselves even stopped by for some attention and to show support.

Today's post is a great big thank you to all that came, munched, made yummy noises along with ooo's and ahh's and gave.

Thank you to all who supported the girls and Gracie's Mum this weekend.

Enjoy the show!

6 Months or so

2011-08-29T15:46:00.000-03:00

Song of the Day: Dance Mother - Sweet Thing

It's been 6 months or so since the birth of my little blog. And much like the first 6 months after Grace was born it's been some of the craziest, busiest, most amazing 6 months I've had in a long time.

There have been high times, low times, even lower times, reflective times, more reflective times, even more reflective times, monsters, hills, spoons, times for moving on, memory generating times and times focused solely on planning for a future that 18 months ago, was so very uncertain.

As I edge closer to 10,000 page views with every passing day, I wanted to share with you, valuable readers, some of my favorite pieces from the last 6 months or so.

I want to thank you, all of you, for helping me get the word out and helping with the effort to raise awareness for the support needed for families living with Multiple Sclerosis.

In such a short time I have been approached and connected by and with so many fighting a similar fight and as such they are more than willing to help me with mine.

From Moms and Dads with MS, to everyday people with MS, to those who just want a cure for their many friends and families stricken with this dreadful disease.

And, although the first 6 months or so have been a blast, the next 6 and beyond will be even better still!

Stay tuned, keep reading, and continue helping us reach the End to MS.

©2011 Gracie's Mum: A Story Of A Mum With MS

Happy Birthday Mum!

2011-08-26T14:17:00.000-03:00

Song of the Day: Good Mother - Jann Arden

Today is my mum's birthday.

In celebration of the event, I've made a few salads and something I swore I'd never ever do.

I baked a birthday cake.

For my mother.

I baked a cake for my mother. Not just any cake. A specially requested cheese cake. Her favorite.

My mum is the type of mum that whenever there is an event, an occasion, a get together, a wedding, a funeral, a baptism, and she asks someone if she can bring something, it is always, always a tray of sweets, squares, cakes, or cookies, you name it, she can bake it.

A few weeks ago while making plans for our birthday visit, I asked about a cake and if she could have any cake what kind would it be.

A cheese cake.

My heart sank.

I agreed to bake it.

The sweating began.

For weeks I've researched recipe's, consulted with friends, strangers, anyone that would listen.

Tonight will be the true test.

I called my mother this morning to wish her a happy birthday and asked her if she would still love me if I served a disaster for her birthday cake.

Of course she said yes. There was never a doubt she'd say yes.

She has always loved me in spite of my many faults, mishaps and blunders.

And she always will.

I owe a lot to my mum for shaping me into the person I am today.

For teaching me the importance of patience and perseverance, for tolerance and the ability to keep my sarcastic mouth shut at the most opportune times. Well, most them anyway.

My mum taught me how and when to love, to laugh and to cry.

My mum taught me the importance of forgiveness.

Any person real, fictional, historical, dead or alive, that I would choose to spend an hour with would always, every time, be my mum.

Happy Birthday Mum!

My two most favorite ladies. Ever.

Like A Hurricane

2011-08-23T08:13:00.002-03:00

Song of the Day: Rusted From the Rain - Billy Talent

August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.

The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.

The most famous of them all to hit Halifax was 2003’s Juan.

With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.

The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.

There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.

And although there weren’t many that hit land, last year was still no exception.

In August of last year we were walloped by a doozy that left us without power for 2 days.

Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.

Good times.

By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.

As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.

It wasn’t the worst of storms but it was a big one that’s for sure.

Hurricanes, although everyone is aware of the season, are for the most part unpredictable.

Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.

And we know that they’re given names and because of that we’re able to remember how bad some of them have been.

But none the less, the actual damage is unpredictable.

Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.

And nobody knows why this time they were hit or why they were spared.

Living with MS is much like hurricane season.

All year long.

Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.

Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.

And nobody has the cure.

And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.

Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.

Many will face a wrath of nature that no amount of planning could have ever prepared them for.

So what do people who live in the path of hurricanes do?

They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.

But very few move away out of fear.

They adapt or die.

So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.

And when and if it comes I have but one thing to say.

You better bring it ‘cause you’ve met your match this time.

RIP Jack Layton

2011-08-22T11:03:00.000-03:00

Song of the Day: I Gave You All - Mumford and Sons

Some sad news was released this morning in Canada.

Jack Layton, 61, leader of the official opposition party, the New Democratic Party (NDP), has died.

Layton made history this year while bringing his party to official status during this year's election and shortly thereafter released a statement that he was taking time off to fight cancer for the second time.

Unfortunately he was unable to win the fight that cancer had picked, but for Canadians, socialist in their thinking or not, Layton will always be remembered as a pioneer, as a fighter, as hope embodied.

And although my father on several occasions has referred to me as the commie pinko in the family for voting for the new democrats, I will never take that term as a negative implication.

Layton and the NDP's were this past election's underdog and they did so much more then win, they made history, they set a precedent, they set an example for all underdog's of the future.

Rest in peace Jack Layton, you fought the good fight, and in doing so, have encouraged so many others to do the same.

Shout Out!

2011-08-19T15:28:00.000-03:00

Song of the Day: Not Fade Away - Grateful Dead

It's the weekend.

Finally.

And for almost 7 days straight the sun has shined it's lovely face on the Halifax area.

And with the bright has come a very welcomed heat.

Fingers are crossed for the nice weather to hold out a little longer.

We're having some dear friends over.

Neighbors from our old street who over the past 6 years have become very dear friends.

They've been there for all the neighborly stuff like helping with big yard projects, snow plowing, babysitting, and even more importantly, getting us through 2010.

Without them, I don't know how we ever would have managed.

Thank you Dan and Lenna for helping us that first night when I had to be rushed to the hospital while sitting with Grace until my mum and dad arrived.

Thank you Lenna for driving me to physio appointments.

Thank you Greg, Jenna and Katelyn for the Welcome Home sign and hanging basket which was such a wonderful treat after 8 weeks in a hospital!

Thank you Jenna for driving me several times for blood work.

Thank you Vickey for the chats and strolls and knowing that you are always there.

The world is made better by great neighbors. And this weekend, we toast and thank all of you!

Have a wonderful weekend everyone!

K.I.S.S.

2011-08-17T17:29:00.000-03:00

Song of the Day: Heavy Cross - Gossip

The children’s author Anna Deskins contacted me for an interview for an upcoming post for her blog.

The interview, which will be posted on her website in a few weeks, included several questions focusing on being a Mommy Blogger.

And although I clarified with her that I do not consider myself to be a Mommy blogger, but rather a mum with MS who has a blog about her life. That the focus of my blog is not necessarily the mum side of things at all, but rather the side of a family dealing with a terrible disease and our effort to spread awareness about living not only with the disease, but as I’ve said before, in spite of the disease.

I feel it’s important that people really see what MS is, what it does and the potential it has to be devastating.

I feel it is also important for that story to be told by someone who has the disease, not by a text book author.

As I came down from my soap box preaching about more awareness for MS and submitted my responses, one of the questions continued to intrigue me.

A question that I answered not entirely with the mum-with-MS-point of view, but with just the point of view of a mother.

She asked if I thought things had really changed much since when we were growing up.

Now, this question could have been taken in several contexts and answered in several ways.

Here is my answer:

As far as the parent/child relationship, yes. Absolutely. More families out of necessity have become dual income families leading to children having to spend more time with their caregivers and not with their own families. That has a much deeper impact on not only the individual family, but with society in general. Values, social mores and traditions are lost or altered and not always for the better. On the flip side, the world is definitely more global and multicultural than 30 years ago and to me that just reaps of benefits. I mean seriously, I grew up in a predominantly white middle class neighbourhood and went to Catholic School. And although for some, there is nothing wrong with that, but for me, the first person of Jewish descent I met was in 2^nd year of University. I feel I missed out on a lot. But a lesson was learned and Steve and I make an effort to expose Grace to different cultures and backgrounds whether it’s through food, festivals, or educational documentaries. And although it turned out that we too live in a predominantly white, middle class community, there are more opportunities to expose Grace to different lifestyles and traditions then there ever was when we were growing up. I think that parents today have an opportunity to be more educated on things that our parents weren’t given a chance, and one important area is multiculturalism. As well, with a more global society comes a more socially aware society and I think parents are finding it important now, to teach awareness and tolerance of various issues that weren’t so prevalent or tolerated when we were growing up. On a more basic level though, I think deep down, mothers and fathers are pursuing a simpler parenting style in an effort to bring back the community based, traditional feel that we did have when we were growing up. Play dates, old school at home birthday parties and child care swaps are reminiscent of a time gone by where parents were able to lean on each other for support and taught their kids that simplicity is always best. So really an answer to your question could be that although things have definitely been altered, the feeling behind it all has come full circle.

I’m fascinated by the truth in the last statement, that things feel as though everything has come around full circle, that the roots of my child hood rearing has profoundly impacted my method of parenting and that although I’ve learned from my adolescence and young adulthood quests to find the real me, as a parent I feel compelled to draw on the examples set for me along the way.

And from there I remembered the Robert Frost poem The Road Not Taken.

It’s often very tempting to follow the path beaten down by the foot prints of others going in the same direction, but often more rewarding to take the road that is pristine and unharmed from foot traffic.

For several years now, the trend in child rearing has been to do everything by a book, or several books’, point of view. And not only is that terribly impersonal, but it’s just sad.

To be afraid to draw on the good and not so good examples of your own childhood, to learn from them, to trust your instincts and to believe in yourself, is just very sad.

Things in my house, in my family were as traditional as they come.

My parents have been married, to each other, for 48 years.

My father worked a 9-5 office job, but often worked much longer hours in pursuit of further promotions in order to be equipped to provide his family with everything they needed.

My mum stayed at home and happily cooked, cleaned, made healthy meals and baked cookies in between loads of laundry and ironing.

My mother didn’t drive, didn’t work, didn’t have a fancy educational background. But she had 4 children and loved them dearly. They were her work, and her promotions were their success.

My parents put me in swimming lessons, gymnastics, softball and basketball and Girl Guides.

Friends could come and go as they pleased because then, my mum always knew where I was.

And although, she was totally old school, June Cleaver without the dress and lipstick, she was the cool mum.

And I hated it then, but I pursue a similar existence now.

Only a bit different.

I acknowledge that not everyone had such a childhood as I did, and that things between me and some of you reading this, is drastically different. But it is the child hood I did have, and I’ve learned great things from it, both to do, and not to do with Grace.

I’ll work as long as I am able, but with hours that allow me to be home for Grace for when she is home for school.

I’ll have birthday parties at home, but I’ll probably not make the cake myself, not because I don’t know how, but because I loathe the art of baking and me cursing the process doesn’t really inspire a festive spirit.

I’ll enroll Grace in as many or as few activities as she wants and not because others are doing it but because it’s what Grace wants.

There will not be any gaming systems. Unless she buys them herself.

We live in the country and for transportation and safety purposes she’ll probably eventually have to have a cell phone. A very limited, no data plan, cell phone.

We will ensure she will have the opportunity to pursue any post secondary education she chooses with out having to worry about a financial burden, but I won’t try to influence her to choose one type of institution over another.

Things here are and will be grass roots with an appliqué of modernity.

We won’t hide our feelings in front of Grace. We will not put on a happy face when we’re not happy in the fear that she will bottle her emotions which could lead to countless other future problems. We will teach her to own her feelings and take responsibility for them.

We will have family game nights. Finger Food Fridays and Saturday Family Fun nights.

We’ll pay her an allowance, but only if she completes certain chores first.

Because nothing in life is free.

Because simplicity is best.

In childhood and in adulthood.

In life.

Keeping it simple allows one to see the benefit in relationships, in rules, in morals, and it allows one to see the value in tolerance, in appreciating one another for who they are and not for whom we want them to be and more importantly not for what they have or do not have.

We’re raising Grace to be socially aware and with a chronically ill mother she has a much broader understanding of the world around her than I ever did at her age.

But her method of making others understand is very, very retro.

She, with the help of my god daughter Cadence, is having a lemonade stand.

For 50 cents you get a cupcake, a glass of lemonade and an opportunity to get Grace one step closer to living a life where MS isn’t even in the picture.

All proceeds will go to the MS Society of Canada.

And let’s not forget the lessons learned in planning, marketing, publicizing, and finance.

A lemonade stand for god sake.

Cool.

Atta girl.

Mummy is so, so very proud of you.

As I know my mum is proud of me, for following so closely in her footsteps and remembering the simpler way is always the better way.

Happy Hump day, I hope yours is stellar in its simplicity!

An Afternoon With Team Daddy

2011-08-15T15:35:00.000-03:00

Song of the Day: Mercy - Duffy

For hours the screen has stared back at me with its annoyingly patronizing blinking smartass cursor daring me to write something!

Anything!

Oh, and I’m not lacking inspirations. There are several instances of late that could be construed into an interesting sentiment on my daily life.

For instance yesterday’s afternoon spent with Team Daddy.

I could write about how they, like us, are a family living with MS.

How their family is so much busier than ours.

How, with two full time working parents, two very cute and very active children ages 18 months to 4 years, a mortgage, a desire to move to a more accessible house, and a very strong passionate desire to learn more and do more for Jeff’s MS that they still had time, energy and breath left to spend time with us.

Granted, they didn’t quite finish their meals with all the toddler wrangling they were doing, but they managed to squeeze in some room temperature bites, half finish a glass of wine and add snippets of breathless sentences to the dinner conversation.

It was a whirlwind visit.

And it left me asking myself: How do they do it?

And it left me blurting out to Steve hours after they were gone: How do they do it?

Both times he answered with a stunned look. A look I'm sure was mirrored back.

And even now, I’m wondering how they haven’t collapsed or cried out for a break.

Just one break.

And they probably have. And they probably will again.

And it amazes me how two families with MS can be so similar and so very different.

I wonder if the MS fatigue induced tired expression will ever dissipate from Jeff’s face.

I wonder if the perennial look of concern/fear will ever ease from Sarah’s.

I wonder, like I do with Grace, how MS will taunt them as their years roll out.

But, I’m also left wondering if they wonder the same things about us.

That is, if throughout the day they ever have time left to do aimless wondering.

I hope they know that days are exhausting for us too.

Simple events like showering can induce a fatigue that requires several hours of rest.

Going to the mall to pick up a shower curtain can induce a confusion so debilitating you end up picking up shower gel, in several different scents and brands because you knew you were there for a reason, a reason related to the shower, only to find out when you get home you have all these new shower products but still no shower curtain.

Sponge bath it is then!

I hope they know that Steve like Sarah often has day’s where he is pulled in 10 different directions where all the needs and wants requested by loved ones are equally important and being the one to choose which receives priority absolutely sucks.

I hope they know that the caregiver role is equally, if not more some days, difficult. That it is a hell of a cross to bear. One in which only the very strong survive.

I hope they know that because of their rarity, a spree of good days is, and should be, often celebrated with friends because no one knows when the next good day will be.

I hope they are never alone with their grief, worry and anger over this disease, but I hope also, that although planning for the worst is always a good idea, that celebrating the best is always, always, more important.

Happy Monday, y’all and I hope you see inspirations in the everyday as well!

Shout Out!

2011-08-12T15:06:00.000-03:00

Song of the Day: Pop Goes the World - Gossip

So, I'm being a little selfish here and shouting out to myself.

Because, well, I've come a long way and the song of the day got me motivated.

I danced today.

By myself.

And it felt amazing.

It felt natural.

And yes, I'm sure I looked completely insane, but I live on a street where there is only 3 houses and ours is the only one currently occupied.

And even if I did care who saw, I'd still dance like I thought no one was watching anyway.

Then I ran.

Yes, lamely around my house, worried every moment that my left ankle was going to turn over and when it didn't I allowed myself to exhale but I RAN!!

My legs weren't this coordinated days ago, weeks ago and surely not months ago.

And, yeah, damn right an entire new list of goals was formed today!

Several factors could be influencing this physiological change.

Maybe it's the sun that has finally shown it's face in Halifax again.

Maybe it's that I've been drug free for a month.

Maybe it's the new relaxed life we're finally allowing ourselves to live.

But something's changing.

I can feel it.

And it feels amazing!

So today, I'm shouting out to having courage, having guts, and not letting yourself down.

Ever.

The courage to embrace the changes that make us feel good, about being ourselves.

So, go on, go dance and have a hell of a good weekend!

Remembering Papa

2011-08-10T07:33:00.000-03:00

As a forward, as an introduction to the following post, I wanted to provide some background. The following post is not about a mum, MS or a mum with MS. Today is the 10^th anniversary of the passing of my father in law, Gary. He loved the outdoors and his garden, especially the tomatoes. He loved hunting trips with buddies where I’m sure he was in it more for the time with friends than the dead deer. He loved and was immensely proud of his sons. He, to his last breath, was madly in love with his wife, Dianne. He was a man with great contrasts. As a firefighter he loved his work, but chose never to bring it home. Never talked much about the things he saw, the people he helped. He would pull your chair out for you, hold a door open for you and then turn around and tell a disgusting dirty joke. He was brilliant and well read, but for the most part kept the knowledge to himself. He is missed so much every day by his family and today will be very hard. There will be plenty of tears I’m sure, but in true fashion and contrast there will be plenty of laughs as well.

Songs of the Day: Orange Blossom Special – Johnny Cash, Unchained Melody – The Platters, Doesn’t Matter Anymore – Buddy Holly (All are songs and/or artists that remind me of Gary)

One day while driving home with Grace after picking her up from daycare, she, from the backseat, asked an amazingly profound question for a 2 year old.

She said, ‘mummy? I have a Nanny, a Grampy and a Gramma, but I don’t have a Papa. Why?’

Gulp.

So, I said the easiest thing that came to mind that wouldn’t overwhelm her, or scare her.

‘Gracie, Papa is in heaven.’

‘Where’s that? Is that like work?’

Oh, god, here we go I thought to myself.

‘Sort of, he’s there and he’s helping other people.’

As I held my breath hoping that the explanation I gave was going to be good enough, she surprised me again with, ‘I miss Papa’.

I swallowed and told her something my mum told me whenever I would ask about my Grandparents. I said ‘next time we look up in the sky at night, I’ll show you Papa. He lives in the brightest star in the sky’.

And every now and then she asks about him. She wants us to tell stories about him, describe what he liked to do, what he sounded like, what his favourite colour was, if he can ever come for a visit.

And often she’ll blurt out, ‘I miss Papa’.

The funniest thing is that if Gary was alive he would have been called Grandpa. Grace made up the Papa moniker all on her own.

And going forward, Steve has said that when he’s a grandpa, he’ll be referred to as Papa.

But it’s sad. It’s unfortunate. And it’s heart breaking.

10 years ago today, Gary, Steve’s dad, lost his battle with brain cancer. 365 days after the surprising diagnosis that would forever change the family of which I was destined to become a member.

For over 25 years Gary was a firefighter.

He loved his work. He took great pride in the work he did and although he knew that each day presented unfathomable risks to his life, he took it all in stride.

Unfortunately the job of saving the lives of others was what was responsible for the loss of his life.

Gary was the first firefighter in his department to die from work related cancer and a full honours funeral and burial was performed.

It was moving and amazing and as I looked up from the reading I was asked to recite at the funeral I saw a sea of blue with grown men and women in uniforms wiping the tears from their eyes.

I was left not only speechless but breathless.

And angry.

Bitter for losing what I would never have.

Gary died just months before Steve proposed and therefore never saw us get married. Never danced with his new daughter in law. Never saw us purchase and move into our first home. Never visited us in Nova Scotia.

Never met or held Grace.

But, there has never been a doubt in my mind that he didn’t see me as his daughter in law.

We connected in a way that I never could with several others in Steve’s family and although I know Steve’s family loves me, some of them just never really got me.

But Gary always did.

As someone who was often misread due to his sometimes stone faced expressions and often quiet, contemplative presence in a crowd, he was able to see through my sarcasm, my often arrogant exterior and saw me for whom I really am.

And he showed this whenever we spent time talking about our two biggest passions: Geography and Politics.

As a World War II buff he was well versed in the associated geography and politics of that era and we would chat and gab for hours and he was incredibly proud of me when I graduated from University with a major in Geography and a minor in Political Science.

That we voted for the same political party was an added unexpected bonus considering that particular party was the perpetual underdog in the Canadian federal system.

When Gary died, Steve and I received his beloved books and maps. And we keep them proudly displayed in our book cases.

Sometimes, I’ll just stare at them, to almost, I don’t know, feel some sort of connection with him.

It must be because his hands would have touched the same pages, his eyes would have poured over the same words, and he too would have put the book down to reflect and then pursue someone else of like mind to have an amazing chat about how screwed up the world is.

And I’ll be forever saddened by the missed opportunities for such chats.

For missed opportunities to learn from him.

For missed opportunities for him to be proud, of me, of Steve, of Grace, of us.

It’s not unusual for me to garner strength from Gary and the memories he’s left us.

During the preparation for my brain biopsy I asked Dianne, Steve’s mom, to bring in a framed picture of Gary for me. Because he had had two brain surgeries and I figured if anyone could have gotten me through it that it would have been him.

And although I have wished that through the entire journey toward diagnosis, rehabilitation and living with MS that he had been present not only for Steve and Grace, but for me as well, as time goes on, I’ve learned to not be so angry or bitter about his passing.

Because the lessons learned from him are epic, eternal and everlasting.

I see so much of him in Steve.

His frugalness, his old fashioned gentlemanly behaviour toward women, the love of a good cold beer after a long day at work, the inappropriate jokes, the incessant swearing when something doesn’t go quite the way he intended, the tender way he speaks to and of Grace and the way he thinks of his friends as family and treats them as such.

And in Grace I see his passion to learn about the world around her. And, much to my chagrin, her love of chicken wings and ribs.

I love that she wants to remember a man she was never able to meet.

I love that she has her own picture of him in her room.

I love that she loves him.

So in honour of his memory on this 10 year anniversary we are having a big meal, some beer and after Grace goes to bed, Steve’ll gnaw on some sort of salted cured meat and tell a disgustingly dirty joke.

And in that great big bright star in the sky, I know Gary will be smiling.

Photo, burial flag and helmet proudly displayed on our mantle

Metamorphosis

2011-08-08T16:29:00.002-03:00

Song of the Day: Here For a Good Time - Trooper

Two weekends past, while visiting my parents, my mum and I went to the farmers market and then out for breakfast at the local, been around forever and even advertise that it’s where the locals eat, greasy spoon.

In line I saw my professor waiting for his breakfast.

As I walked up to him, I could tell he hadn’t a clue as to who I was.

I said, ‘Hi Bill.'

Nothing

Offering my name, gesturing with my hands I said 'Angela.’

Nothing.

‘From the Halifax class’.

Nothing.

‘The one with MS’.

His ‘a-ha’ moment was priceless.

What was better was that he said he didn’t recognize me because I looked ‘great! Ten years younger’!

Ok, so it’s been a year and a half, and the last time I saw him I was really sick and weeks away from my big attack.

I’m sure I looked terrible.

In fact I know I did, Steve’s birthday was right before the attack and I’ve seen pictures.

But to be told I look ten years younger, well, that’s a really nice mix of feeling oh god, what the hell did I look like and hmm, nice.

After a brief chat, and me telling him my plans of continuing with the program in March and slipping him the address to my blog, he wished me well and we went our separate ways.

But the feeling the chat gave me has stayed with me since.

I’ve been buoyed by the feeling and the look that goes with feeling better and just as if the skies after a marathon length thunder storm have opened up, the world around me is clearer.

This new found clarity has provided an opportunity to see the metamorphosis that has become my world.

Things are changing around here.

We’re growing up. Evolving.

This evolution began with a trip to the mall.

In preparation for Grace’s very first day of school, we did some shopping this weekend.

Aside from the crayons, markers, pencils, glue, scissors, folders, backpack, My Little Pony lunch box and Tinkerbell pencil case we purchased Grace’s gym/inside shoes.

She had them on her feet from Saturday afternoon until Sunday evening braking only for sleep and to play outside with her friend Abby.

These new beautiful purple trimmed Addias got me thinking about her very first pair of walking shoes.

She was just as excited.

That was four years ago.

In those four years, so much, both the good, the very bad and the even uglier, have happened.

And we got through it as a family.

The power of friends is amazing, but the power of family is off the charts.

When a family has it together, can rely on each other during both good and bad times, and gets out on the other side laughing about it all, is truly rare.

I draw inspiration from my Mum and my Uncle, her brother. Both parents gone, sisters who have passed much too young, and in spite of the distance between Ontario and Nova Scotia, they connect and reconnect with an ease that is remarkable.

That same weekend, I was treated to a visit with my Aunt and Uncle, who are Grace’s godparents, for a brief reconnection, a few beers, and a lot of laughs during which I realized that like anything a family too has it’s ebbs and flows, it’s ups and downs and happy and sad times.

My Mum and Uncle Doug

I’m positive that my little family of three is on their way to a new and fantastic period in life that will feature happiness as the headlining emotion.

To feel the evolution of a once dominant emotion take the back seat to allow for another to step up, is moving in more ways than you can imagine.

The past few weeks have been pivotal in our lives.

New home, new medications, new routines, new priorities.

In a few short weeks Grace will walk to school for the first time. I will hold her hand the whole way, hug her good bye, take many pictures and walk home. By myself.

It will be tough, raw and incredibly awe inspiring knowing that my little black haired, blue eyed almost 9 pound baby has grown up into a stunning blue eyed, long and lean, brown haired beauty that will no doubt take the world by storm.

And she’s totally ready.

Emotionally and intellectually.

She’s ready.

She's way to big for the Trike and that helmet, but she refuses to ride her real bike. And, there's no arguing with her.

I find myself a touch jealous that Abby's parents get her for one more year before she too becomes a 'Schoolie'.

It remains to be seen if Mummy is as ready but this is so not about me right now, and I want her to flourish like only I know she can and will.

She has Steve’s sensitivity, ability to empathize and quick wit which will make it easy for her to make friends and she has my determination and stubbornness which will ensure she gets what she wants from life.

And together Steve and I will make sure she knows she deserves whatever goals and dreams she plans for herself.

It is up to us to help her obtain and achieve them.

This is a momentous period for us as parents. To ensure our child is receiving the frame work needed to be a successful, contributing member of society while ensuring she is aware of what is important to her and how to get it.

The pressure is on, but we can handle it.

In the mean time, we’re sucking in the last remaining weeks of Grace’s pre-school childhood before she becomes a full fledged ‘schoolie’ with different priorities, homework, different friends and a whole new set of rites of passage.

Like the first wiggly tooth. The first school assembly. The first report card. The first ride without training wheels. The first broken heart inflicted by a school yard crush. The first fight with a girl friend. The ‘I have nothing to wear’ days. The driving lessons days. The University applications.

And as usual I get ahead of myself.

For the next few weeks Grace is safe and secure in this world, the here and now with all she loves, has known or wants.

And for the next few weeks Grace is still ours while we remain on the verge of allowing ourselves to allow her to take the next step into growing into herself.

I can only hope that in the past 4 almost 5 years we laid down enough of the ground work for a foundation to support her dreams, to go out and get what she wants.

Because, she deserves it.

On The Road Again

2011-08-05T07:25:00.000-03:00

Song of the Day: Walk - Foo Fighters

It’s been a long road.

Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.

And then, then it got a little swear-y.

I’ve been on this road for almost 5 years and a new road is just around the corner.

In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.

I have not returned to work since my departure in March 2010.

That is a lifetime ago.

And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.

Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.

On top of that, I have a house designed to conserve my energy.

I won’t say I feel back to my old self, because I don’t even remember what that felt like.

It’s been a long time.

I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.

A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.

I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.

To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.

To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.

To have future career goals.

Because I have confidence that my energy levels will not fail me as miserably as they have before.

For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.

I know that I will have MS for the rest of my life.

I know what MS can do without medication to divert its course.

I know now how one of those medications made me feel.

And I have learned from that experience.

I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.

I need this and my family really needs me back to being me.

And that I can see her, smiling back at me in the mirror, is almost too good to be true.

But to know, to believe that it is true, is even better.

Have a wonderful weekend!

A Rendevous With Solitude

2011-07-29T13:53:00.001-03:00

Song of the Day: Man I Used to Be -k-os

For this long weekend, we're heading to Mum and Dad's.

It's a long overdue visit to a place where I always find solace in the things that are just simpler in the presence of loved ones.

Steve will head home for work on Monday but Grace and I will stay behind for a few more days and I'm looking very forward to being with her in a place that I love. A place I came to for family vacations when I was growing up.

However, the price I pay for being on a bender with Solitude is the lack of internet access. Dial up and an Intel Pentium 3, Windows 98 to boot, or reboot whatever the case may be, so, no posts until Friday.

Have a great weekend!

Monsters

2011-07-27T11:49:00.001-03:00

Song of the Day: Monsters - Band of Horses

About two years ago Grace went through a phase where she believed that there were monsters in her room.

Not just under the bed, not just in the closet or behind her door.

No, she believed that they came in through the night, from where we don’t know, but she believed in them and we let her and we took the necessary precautions to make her feel confident that the monsters wouldn’t be welcome in her room.

We made a sign.

She couldn’t write or read at this point but she knew what it said:

No Monsters Allowed.

She decorated it and we hung it up on her door so that at night, when it was closed, the monsters knew to turn around and go back from where ever it was that they came.

And it stayed there.

It didn’t come down during showings on the house.

It didn’t come down until moving day morning and only then to be re-hung on the door to her new bedroom.

She still believes that monsters are a threat to her sound sleep. To her security. And although she’s never seen a monster, she knows that the risk is far too great to not hang a sign.

It’s astounding how much adults underestimate the intuition of a child.

It’s no secret that I do not have a spiritual, mystical or religious system of beliefs and that I am an agnostic.

But there is something, somewhere deep inside me, that believes that sometimes things are more than coincidence.

Not more than six months after hanging that sign, I, Gracie’s Mum, was diagnosed with MS.

And, it is in fact a monster.

It goes unseen, unheard, unfelt, for months. But you know it’s there.

And it was.

And it is.

And we live with this monster, the three of us, every day.

It lurks behind doors, at the top of stairs, at the bottom of hills.

It laughs as I get in and out of the tub, daring me to slip and fall.

It nags me and taunts me whenever I walk from a smooth surface to rough waiting for me to lose my footing.

It waits patiently in the dark for the last minute before spoiling a long planned family outing with unexplainable fatigue or dizziness or lack of balance or all of the above mixed together in a toxic cocktail that can only be cured by a few days in bed.

And in spite of all the signs, or ropes of garlic, or crucifixes, séances or exorcisms, this monster, although not allowed, not invited, will still come through every and any open door in our lives.

It’s the in between times that matter.

The time between visits from this monster that matter the most.

Also, the comfort in knowing we are not the only family being plagued by such a terrifying monster sometimes does more than any sign could.

Knowing there are others out there, like us, going about their business, planting gardens, planning trips, getting ready to shop for back to school stuff, all the while looking over their shoulder, under beds, behind doors and in closets, is often enough to get though the paranoid induced moments in our lives.

MS is a monster in our lives, and in the lives of many others.

MS is a monster in Jeff and Sarah's life. And they have a team fighting this monster. And that team raised thousands and thousands of dollars to pay him to get the hell out of their lives.

And our life.

But, we are not hiding him under a bed.

No.

We will continue to show him off and talk about him, and write about him and lure him out of his hiding and take him for a long walk raising thousands of dollars to show him how much we hate his guts.

And if that doesn’t work, then there is always Gracie’s sign.

Happy Hump Day and don’t forget to look under your bed tonight before turning off the light!

Last weekend was the Rona MS Bike Tour and Sarah gave an amazing speech to the riders. Please have a look here.

The Promise of Right Now

2011-07-25T10:23:00.001-03:00

Song of the Day: You Are My Sunshine - Ray Charles

If I analyze the past 8 years of my life, there are three pivotal moments within that time that have allowed me to stop, to breathe in all that is happening around me, and exhale a lovely, smile inducing sweet breath.

The first of those took place as I sat at the head table of my wedding reception during the last few minutes of feverishly finalizing and memorizing my speech. And as I looked around at my guests enjoying the Marche style dinner I smiled to see some friends reaching with plate in hand to the chef at the Prime Rib station for second helpings without ever having to leave their seat. With my smile still in form, I rose with my new husband to take our positions at the podium for our speech and as I looked out to the crowd of friends and love ones, I exhaled, holding the smile.

The second was during the exhausted, anxious, giddy few seconds following the birth of Grace. She was hastily wrapped in a blanket, placed in my arms and while Steve cut the cord I looked down at her beautiful little face, blue eyes and wavy black hair, and I smiled a deliciously sweet smile while I breathed in an equally sweet breath of relief that not only was pregnancy finally over, but that the reward for all the hardship had been so, so worth it.

Finally, the third was, is, the right Now moments of, well, right Now.

I’ve caught myself walking around my new house smiling.

Smiling at nothing in particular or momentarily significant, but smiling nonetheless.

I’m in love.

With this house, with the home it will become and the promise it brings for an easier day to day existence, free of stair climbing induced exhaustion, for the space it provides my family to grow as a unit and as individuals and for the level yard and gardens that will provide hours of enjoyment for all of us.

And although in the years to come, as my MS progresses, I will never have to be burdened by the thought or fear of having to relocate because this house suits my needs almost as if it had been built just for me.

But MS has been the last thing on my mind this past week.

Maybe it’s because in preparation to switch disease modifying drugs I have stopped my current medication to give way for at least a month of drug free time before the new one is introduced and as such I have actually felt better in terms of fatigue. I have more energy and more passion. And a lot more spoons left at the end of the day than usual.

And so already, I owe this house a ton of thanks.

In a few months I will be back to work, and although I’m anxious to begin the next chapter, I’m not as fearful anymore, because as far as the Battle of the Fatigue is concerned, I know this house has my back.

And the promise of the huge, great things to happen and the new moments where spontaneous smiles are the norm is just beautiful.

May your Monday provide you at least one spectacular Right Now moment and be promising for a happy and healthy week!

Stay Tuned . . .

2011-07-18T11:48:00.000-03:00

We are currently in the process of moving and access is limited.

Stay tuned . . .Regular posting will resume next week!

Happy Monday!

Period

2011-07-13T18:39:00.000-03:00

Songs of the Day: Tears and Rain – James Blunt/Halleluiah – Rufus Wainwright/Chip Away – Jane’s Addiction

This morning my stomach was in my throat.

I had lost the ability to eat for emotions sake because I had lost my appetite.

I no longer felt the need to quench my thirst. I was not thirsty.

I was a stone shell aimlessly wandering through my house weaving in and around packed boxes and piles of miscellaneous what nots that will no doubt end up in a box, thrown together, taped up and labelled “stuff from main floor”.

Because I had lost the need to remain organized.

I have been painfully forcing myself for the past week to not shed one single tear.

Because people want me to be strong, people need me to be strong.

It is how they define me, how I define myself.

And because the release had been prohibited, I had become a breathing piece of concrete.

I was waiting for 3:45 AST to feel what I knew could be painful.

What I knew could send this family spiralling into an emotional oblivion.

Again.

I was waiting for test results.

These test results were not supposed to reveal anything because they were supposed to rule out something, in favour of something else.

The disease modifying drug I have been taking to manage my MS since May 2010 has been working beautifully as far as MS is concerned.

There have been other problems.

Other symptoms we, my MS doctors included, had chalked up to side effects and the possibility that I am simply not tolerating the drug. But, before we switched to another disease modifying drug we needed to rule out other possible causes for the symptoms I’ve been experiencing.

The biggest side effect of the drug I am on is flu like symptoms, i.e. Fatigue.

Got it.

An increase in liver enzymes.

Got it.

And much to the chagrin of several of my friends and family reading this right now, the increase is not related to my lack of ability to turn down a cocktail.

Another side effect, not commonly reported, is irregularities in the menstrual cycle.

Since starting this drug mine was never irregular per se as much as mine has been a little shy of constant, for one year.

I have tried other ways to regulate it, all along thinking my body just had to get used to this new drug, by trying different dosages of the birth control pill, to no avail.

So, a pelvic ultrasound was ordered.

The doctor’s office called on Thursday.

They wanted to see me to talk about the results.

The receptionist of course couldn’t tell me what they wanted to talk about, just that they wanted to see me sooner rather than later.

My doctor is on vacation. So, I’m seeing the doctor covering for her. The earliest appointment was Wednesday, 3:45pm.

Today.

It could be nothing.

Of course if it was nothing, they never would have called because like many doctors, mine observes the “no news is good news” rule.

So a call means Something, possibly a bad Something and even more possible a really bad Something.

It could be several different things. But in the back of my mind, something told me to prepare for the worst.

My Grandmother died from ovarian cancer that had metastasized and spread to her stomach.

My sister and my first cousin both had large tumours removed from their uterus resulting in a hysterectomy.

They hadn’t turned 40 yet.

And although, ordinarily, the call to come in to see the doctor probably wouldn’t have sparked so much worry because I’ve had ovarian cysts myself before, they were painful, and since I haven’t had any pain, I probably should just be more confused rather than worried.

But as I was leaving the examining room after the ultra sound last week, I snuck a peek at my scan which was still on the screen.

4 yellow arrows pointing to a dark shaded area of My uterus.

And again, that could mean several things. I’m not a radiologist and I’m not trained to read these scans.

But in the back of my mind, I needed to prepare for the worst.

And so I was in a walking coma of disbelief.

I think the root of my state of being stunned is that although I’m used to receiving bad news with which the subject revolves around me and my health, I find it so incredibly hard to believe that what I was thinking could in fact come to fruition.

And we wouldn’t know until 3:45.

So as the thoughts were swirling around regarding what the hell is wrong now, and pushing out thoughts of what could be wrong I found myself getting angrier and angrier that there is a distinct possibility that I could be dealing with another diagnosis with yet another disease.

A really bad disease.

It was inconceivable to believe that I will have to face dealing not only with Multiple Sclerosis, but with something far worse.

And the two would coincide with each other.

And I wrestled with the thought of not being strong enough for that.

For all the bravado and strength I have blindly managed to portray myself as having, this may be my undoing.

A reprieve is what I was after.

A break.

For someone to pull the plug because this morning, in my life, in the house which will be mine for only 3 more days, the proverbial shit had hit the fan and it was oscillating full blast.

Just one break.

Strength is a virtue from which I was wishing to be temporarily excused.

Although, without it, I would have had to stop living, I would have had to stop mummy-ing, wife-ing.

Living.

And right now, life just has to go on, because this house won’t pack itself, the stuff in it won’t move itself, and the legal papers and deed transfers won’t sign themselves.

So, stubbornly, I along with life, would go on.

And right now, Adapt or Die has a meaning so profound it is tangible.

And it was to it that I clung or otherwise I would fall.

That was yesterday. Today went a little something like this:

Arriving early as usual for a doctor appointment knowing full well that I’ll have to wait twice as long as I am early, I took advantage of browsing through the really cool educational toy/book store that is next door to my doctor’s office.

After I had selected a few items to place on my mental Christmas list I found myself uncharacteristically in the parenting section of books scanning the titles hoping to find something about teaching your child how to live with a parent that is chronically ill while still maintaining their childhood.

Before I found it I heard, “See anything you like”?

A familiar, heart warming, voice that I have loved for nearly 14 years.

Steve had left early from work to wait with me. To be there in case the news was really bad. In case it was too bad to be heard alone.

After I had pointed out all the Christmas gift ideas for Grace, Steve and I went next door to the doctor’s office to wait.

And finally in the presence of a doctor I had never met until now, who was running an hour behind schedule, I exhaled.

There was nothing terribly scary or horribly wrong.

Just two little cysts on my ovaries.

Been there. Done that.

But, now what?

Because this is no answer.

This is relieving yes, but gratifying, no.

So, we explored other possible reasons for my ongoing, sometimes ending, but always returning period.

Thyroid? Possibly, I have Hypothyroidism so maybe I need a stronger dose of meds to control the levels.

Anemia? Possibly. More blood work.

My disease modifying drug for MS? Most certainly.

And I can handle that. Measures are being taken to switch to a new medication anyway, so onward and upward with that I guess.

But, I’m still left with the bitter taste of Déjà vu.

For 4 years I searched and begged doctors to find out what was wrong with me, only to be handed feeble and wrong diagnosis’ to ultimately find myself in a situation that left me with two possibilities: cancer or MS.

And only after I became paralyzed.

Now I find myself feeling angry and resentful that the road to MSville has robbed me of the natural human inclination to hope.

To hope for the best but expect the worst.

I wish that I could get back whatever it is that I lost that now prevents any other option but expecting the worst.

That’s beyond being negative.

It’s just sad.

Period.

The P in The Pool of Life

2011-07-11T12:23:00.002-03:00

Song of the Day: Doctor My Eyes - Jackson Browne

I’m a negative person. I’ve come to realize that through the years.

A real Negative Nelly.

And, in my opinion, rightfully so. Because if it’s going to happen, it’s going to happen to me. To prepare for worst case scenario for me is equal to preparing to get out of bed in the morning. I often joke that my middle name is ‘worst case scenario’.

But something good has come out in spite of all this negativity.

Something real good.

I’ve allowed myself to trust myself to let go of the sides and swim into the pool of positivity(wow. That’s deep).

I began to blog.

I promised myself that this would not be a blindly positive experience, where I’d sugar coat the pro side of everything and anything having to do with Multiple Sclerosis.

Because I won’t.

It sucks to have MS. It sucks real bad.

What’s worse is the associated problems that come with it. Like, for example, the adverse reactions to medications, the potential side effects, including death, that come with the stronger medications that you end up having to go on when the front line medications are poorly tolerated.

When I’m not blogging, the worst is the worst is the worst and that’s all there is.

When I’m blogging, I allow myself a much needed avenue to positivity.

When I’m writing I provide myself with an out much needed toward seeing the brighter side of things.

Because when I’m not writing, when I’m not blogging, when I’m not appreciating the valuable face of everyday events and happenings, then I’m truly missing out.

And Today is all we have.

And this weekend was an opportunity to leave the worst behind and think only forwardly. To appreciate the now. To fall in love with the two most valuable people I have in my life all over again.

This weekend was a time to see them in a light that has been dimmed during the past year.

A light that has been grossly taken for granted.

We escaped for a weekend that was truly family focused.

We drove three hours, telling funny stories, daydreaming out loud and planning for the near and far futures of our lives.

We settled into our hotel room, equipped with a view of a rainforest inspired pool area, put on our trunks and tried it out.

Our balcony

Our view

We dried our selves off and headed toward the onsite indoor amusement park. We rode the potentially lame but surprisingly adrenaline inducing roller coaster and the metaphorical experience was palpable.

Because, it is fast, high flying, twisting and turning, suddenly stopping, faster taking off such as life.

And this was only the first day.

The second was yet another unfolding metaphor.

The plan was to get up early, head to the car show for which we came, and spend the entire day outside enjoying the common thread that binds us together.

The car loving gene.

But, instead, we overslept, got on the go late, made it to the show just as the skies opened up with torrential downpour.

We turned around, tails between our legs, in the direction of the hotel.

And something, made us buck up and forget about the environment, and focus on the experience.

And despite only having one polka dot ladybug umbrella between the three of us, we flipped the overcast skies and the impending threat of even more rain the finger and u-turned it back to the show.

And we had a blast. We saw a lot of cars, we shared a lot of laughs and we kept our cool.

My fav

Grace's fav

Because it was crowded, wet and muddy. And Grace was only in shorts and a T-shirt and a thin rain coat, Steve’s Chuck Taylors had holes in the sole that made sloshing noises as he walked, and my hair exploded in the weather.

But we didn’t care.

Because for once the focus wasn’t MS, wasn’t selling the house, wasn’t the fear we live in for what else can happen next that will surely rock our world, and not in a good way.

The focus for once was Us.

And when we finally said enough was enough to the weather, we headed back to the hotel for lunch, a swim and another go at the rides.

Grace had her first experience with Room Service.

Grace did some awesome front and back floats in the pool.

And Grace gained some confidence and jumped and jumped and jumped into the pool. And shiveringly screamed one more jump!, over and over and over again until Steve carried her blue hued body back to the hotel room.

Ready . . .

Steady . . .

Go!

I'm nnnn-ottttt cccc-ol-dddd

And Steve and I took a deep breath.

MS has taught us a lot.

But the lessons learned are new, and we still need a lot of practice remembering the way back.

And obviously the way back is dotted with pools, cars, and Us.

And that is fine with me.

Positively fine with me.

Enjoy your Monday!

Superbad

2011-07-06T10:05:00.001-03:00

Song of the Day: Superbad - James Brown

With only 10 days until moving day, with only one weekend left for what some would reserve for the Power Pack, with most of my house overcome and fit to burst with precisely labelled and perfectly packed boxes we are doing something some would call ridiculous.

We are going away for the weekend.

Not just any weekend either.

This weekend was Steve’s birthday gift way back in March. This weekend was sweated over when the purchasers of our house decided on a July 18^th closing. This weekend was celebrated with a breath of fresh air when the house we purchased was able to be closed on July 15^th.

This weekend would be unscathed by closing dates.

However, we had only one month to pack up a house that Steve and I have lived in for 6 years, a house that Grace has lived in for four.

That’s a lot of stuff.

But, you better believe that this weekend wasn’t going to be affected by a little thing like a move.

No, noo way.

So, while some would save the last weekend before moving day as the weekend to commence Power Packing, I, yours truly, have been power packing for a month.

This weekend just means too much. To all of us.

Ok, so the destination itself has nothing on Cabo San Lucas, or Belize or Costa Rica. Hell, it even has nothing on Toronto for god sake.

It’s Moncton, New Brunswick.

Not the getaway capital of the world by any means but there is a hell of an event going on this weekend, and this weird and wonderful family is all over it.

This weekend is the Atlantic Hot Rod Nationals and Steve and I have been planning on going for years and although it would have been nice to drive there in our ’52 Chevy, we’ll be driving there in our ’06 Tuscon instead because time has been the ‘52’s enemy in so many ways.

For Steve’s birthday this year, I booked an awesome suite at one of the hotels in the middle of the excitement, equipped with a kick ass pool, a view of which we have from our room, for Grace to get her groove on.

So, having said that, it’s no surprise why I didn’t let this move get in the way.

For months Grace has, for the most part, been smiling through the stress she’s felt from this move and between the tears, tantrums and questions, questions and more questions, she has an exhausted look about her.

She needs a break.

We all do.

It’s been a year of doctor’s, steroids, plasma treatments, pills, pills and more pills, injections, physiotherapy, cane’s, braces, wheelchairs, fatigue, tears, tears and more tears.

Throw this move on top of it all and we’re just about ready to crack.

So we’re running away from it all.

For just a weekend.

But we’ll be together, the three of us, away from it all.

We’ll come back on Monday, refreshed and ready to close the door to this awful chapter in our lives.

A chapter that no matter how awful, renewed our spirit and reminded us of the importance of endurance, perseverance, and inner strength as well as reminding us that we are never alone in all of this, as long as we are all together.

And for the record, I got soul, and I’m super bad. Give me a challenge, and you better believe I’m going to rock the hell out of it.

This move, like MS, never stood a chance.

Have a great hump day, rest of the week and weekend!

Like an Onion

2011-07-04T11:00:00.001-03:00

Song of the Day: Dog Days Are Over - Florence & The Machine

Life is like an onion.

Lots of layers.

Some make you laugh, cry or leave a bad taste in your mouth.

I’m realizing how true this is as I finish packing up my house and preparing for the move which is, gulp, less than 2 weeks away now.

I’ve uncovered so many layers I’m beginning to think I deserve a spot on some show about hoarding.

I’m a closet hoarder. Neat on the outside, stacks of crap on the inside.

Beneath the crap, I’ve uncovered mementoes from the early days of Steve & Angela. Movie stubs, pictures, the wedding planning book.

Also, keepsakes from terrible times.

The newspaper story about the battle with work related cancer lost by a local firefighter – Steve’s dad – which resulted in a full honours funeral and burial service.

The front pages of the Toronto Star, Globe and Mail and People Magazine from September 11^th 2001.

And of course the keepsakes of the heart string variety.

Grace’s baby book. The baby name book. The pregnancy photo shots. The teeny tiny newborn diaper kept to remind us just how small and cute she was during the times of Category 5 temper tantrums when we’re questioning who the hell this child belongs to.

It’s amazing the journey my little family trio has been on. And it’s all kept on record in my piles of stuff.

The D.I.N.K.S years. The baby years. The toddler years. The what the hell is wrong with me and why don’t the doctor’s know anything years. The recovery years. The moving on years. The living in spite of it all years.

I’m most excited about the last one.

Day one in the new house will be day one of living in spite of it all. I cannot wait for that new journey to begin.

The new milestones. The new benchmarks. The new favourite holidays, birthdays, beach days and just hanging around days. The new gardens. The new ‘do you remember who gave us that?’ moments that start even more reminiscing. When we remember just how far we’ve come and how much we’ve been through. As a family, as individuals.

To New Beginnings! And a very Happy Monday to you and you and you!

True North Strong And Free

2011-06-30T15:35:00.000-03:00

Song of the Day: Fireworks - The Tragically Hip

Happy Canada Day!

For me, to be Canadian, means to be free. Free to love, freedom to experiment, free from government backed atrocities and genocides. Free to marry whomever we choose. Free to seek out experimental medicine to make those of us living with chronic and painful diseases feel better. Free to feel safe knowing that the Conservative majority will be kept in check by the Socialist minority.

Free to believe that it’s not perfect here, but free to be able to act out and change it.

For me, to be Canadian means to be proud. Proud of our citizens and our troops, who fight with weapons of both the military and the literary, for those who cannot fight for themselves. Proud of the men and women who help to rebuild the destroyed, the battle scarred, the broken.

Proud of the fact that there is so much promise and so much hope for those that can and will change the world.

And of course there are the littler things too.

Muskoka Cottage Country. Lake Ontario. The TransCanada Highway. The seasons, the fall colours, the spring tulips. The Atlantic and the Pacific Oceans. The Rockies, the Eastern Townships, the Bay of Fundy.

The musical inspirations from the likes of The Tragically Hip to The Guess Who, from Jann Arden to Sarah Mclachlan to Feist, from The Trews to Big Sugar to Arcade Fire. And from everyone else in between.

The beer. The Poutine. The beaver tails. The Tourtèire. The blueberry, raspberry and rhubarb pies. And of course, the maple syrup.

Hockey (obviously), toques and hate it or love it, the Tim Hortons.

This long and fabulous weekend, make sure you think of what your favourite Canadian things are.

No matter whether little or big, if they`re Canadian, then they`re awesome!

Dreams Released From Escrow

2011-06-27T11:01:00.000-03:00

Song of the Day: If I Ain't Got You - Alicia Keys

While in the hospital, I knew the road to recovery, full recovery, was going to be tough, long and all – every last inch of it – up hill. I knew, first and foremost, in order to feel recovered, I had to get up and walk. Lose the brace, lose the cane and walk. One thing stood in my way.

Actually 24 things.

From arriving in the driveway to entering the front door to making it to the main floor, there are 24 stairs.

24.

Our current home is a Split Entry and is not conducive to living accessibly.

In a spit entry, you are not quite in a bungalow, not quite in a two story. Upon entry you can either go up or down, hence the ‘spit’ and if you go down, you choose from rooms including the laundry room, the powder room or the family room. If you go up, you are on the floor that allows all of the major living requirements: the kitchen, dining room, access to the two story deck, living room, full bathroom, and all three bedrooms.

So, to do some ‘living’, you have to, first and foremost, be fit enough to climb the 24 stairs.

It took me 8 weeks to be ready to go home and do some living.

For several weeks, once home, it took all my energy to go down the stairs to go out to the car, and I still had to have energy upon returning home to be able to climb back up all those stairs to lie down in bed.

I was recovered enough to go home, but not enough to live in it. I became housebound.

But only for a little while.

Things got better and I learned to think and plan efficient use of the Spoons when it came to using those stairs for say, doing laundry, bringing home groceries, watching television downstairs and needing a drink from the kitchen etc.

But seriously, if you don’t need to count out spoons in order to plan your day, you don’t understand how frustrating it is to run out of spoons before you even get out the front door some days.

Before long, the house was on the market and we looked for a bungalow. Something that would allow for ease of entry, main floor living, while still allowing us to have a downstairs for a rec room and 4^th bedroom for guests but that didn’t have anything I would need on a regular basis and my daily spoon count could remain intact.

Not an outrageous request, but a very specific request. Add to that, our desire to stay in the same neighbourhood.

Close to impossible.

Add to that, the fact our house took forever to sell.

The stress of it was overwhelming. It got worse as one by one, we saw potential houses be sold while ours remained unsold.

But that all changed on Friday.

By some shear stroke of luck and good fortune, our house completed its escrow and all of the buyer’s conditions were met. Likewise, the house we put an offer on also firmed up on the same day.

It was a good weekend.

It was a great weekend for day dreaming. Imagining how happy we will all be in the new house.

Steve will be getting his long sought fully detached double car garage and as a bonus a large area in the unfinished part of the downstairs to be used as a workroom.

Grace will be getting a new room, her own bathroom as well as a huge bright play room. And as a bonus, which she is yet to know of because she deserves a huge surprise in this year of upheaval, a brand new outdoor play area, equipped with slide, swings, climbing wall and tree house. Plus, she get's to walk to school!

And of course, mummy faired pretty well also. A main floor laundry room, a master ensuite, and a kitchen with not just stainless steel appliances but which also includes a large pantry, enough counter space and a large breakfast bar/island area. And the windows in this place are endless and the view is awesome since the street is elevated enough you can see the long off in the distance foothills of the ancient escarpments that mark the eastern shore.

But most of all, if disaster strikes us again, coming home won’t be terrible or impossible as the driveway is paved and the entry is level.

It’s not the dream house we dreamed of when we packed up everything and moved to Nova Scotia. We moved here to be near or on the ocean or on the lake for which our community is named. But, MS is expensive and that dream is not realistic or financially feasible right now.

But MS taught us to be tough, and fight and to dream new dreams.

And with the spoons that the new house will save us, we will have energy left to dream. And we dream of a retirement on the lake, in a house that meets our needs and has views of sunsets to die for.

But now, right now, we have the house of our current dreams. A house that allows us all, for once in the past year, to truly be happy.

And, happiness, that's all we ever wanted anyway.

Have an outrageously happy Monday, and an awesome week. My mum is coming to help pack the kitchen and china, as I don’t trust my hands as much anymore, so I’ll be otherwise engaged this week but I’ll be back for Friday’s post!

Shout Out!

2011-06-24T11:38:00.000-03:00

Song of the Day: Blackbird - The Beatles

I have wanted to write this post for months. I wanted it to be perfect. I wanted it to embody my feelings yet not sound or feel soupy with emotion.

I’ve sat down several times, hand poised and ready over the keyboard, but the words, they would not do my emotions justice.

So today, I strung together several drafts and versions of what I wanted to say.

There is a person in my life who I consider to be a gift. And today, I shout out to her.

Today, I share with you, my most wonderful friend, Tasha.

There is a sign, thin and metal, made to look old, that hangs over the entrance to my kitchen that says ‘One loyal friend is worth ten thousand relatives’. Almost every time I glance up and notice the sign Tasha comes to my mind.

A pairing more unlikely yet made-to-be-friends we could not be. We come from very different upbringings, grew up with different goals, pursued very different paths to adulthood.

But there she was, one rainy summer day, waiting for me to begin the job interview that would forever change the way my life was destined to pan out.

I didn’t want the job. Or at least, that’s how I felt before the interview began.

A recruiter had phoned me, offered me the interview which I immediately turned down. I was in corporate travel sales, not loving my job, not quite hating it either and didn’t feel like going through the process of starting over again.

The next day, after tossing and turning all night over a missed, possibly great opportunity, I phoned the recruiter back and agreed to take the interview.

Tasha was the manager of the agency, which specialized in student and adventure travel, and was looking to hire a senior consultant. It was an area of the industry I had yet to explore and was eager for the challenge.

The work intrigued me, and I left the interview, certain I would get the job.

Upon returning home, Steve asked me how it went.

My reply: ‘you know, I don’t care about the job so much as I can really see myself and the girl that interviewed me, being friends’.

I got the job and the rest is history.

And the history is an amazing tale of kindred spirits, navigating, falling down repeatedly and being picked up by each other, over and over again.

Several months after we met, and several get-togethers, shopping trips, manicures and pedicures, and hours of laughs later, Tasha announced she was pregnant. (‘Announced’ is a stretch of my imagination. Tasha and her on again off again boyfriend were not planning a family, and he didn’t even know she was pregnant yet. The ‘announcement’ came over an instant message with her asking if I could ‘keep a secret’. )

A few months after that, Steve and I moved to Nova Scotia.

Fate had it, that Tasha’s boyfriend Kevin had family in Nova Scotia and Newfoundland.

Our first New Year’s away from home was actually spent with Tasha and Kevin and their newborn daughter Cadence at our new home.

That night when they asked us to be godparents, I was over the moon, and I’m sure I cried, of course I cried, and more for the fact that someone thought that highly of me, than for the actual duty I was about to take on.

A month later, I found out I was pregnant.

Tasha was the first person I called.

With her living in Ontario, and me here in Nova Scotia, she counselled me through a difficult pregnancy both over the phone and over instant messages. I was over the moon excited to receive the enormous box of maternity clothes Tasha was happy to get rid of and baby clothes that Cadence had outgrown. I was heartbroken when my pregnancy prevented me from travelling to Newfoundland to participate in the Christening of my goddaughter.

I was incredibly huge and swollen at the end of my pregnancy when I received an instant message that started off with “can you keep a secret?” From her laptop, at school where she was training for a new career, she was announcing a second pregnancy. We would be pregnant at the same time for about a month. Cool.

Off a parcel went again with baby clothes, for the new baby, Norah, and my “happy to be rid of” maternity clothes.

With two children under 2 years old and a very insecure job situation, Kevin and Tasha decided they needed help, and the only way to get ahead in life was to pack it all up and move.

To Nova Scotia!

Where they would temporarily live with Kevin’s family until they saved enough to buy a house of their own. Tasha landed a great job in her field and not too long after, so did Kevin. A house was built, a new business was started, and they are officially on their way to making it.

And they are here. We were all here together.

Get togethers, shopping trips, manicures, pedicures, bottles and bottles of wine and tonnes of laughs.

When they announced their engagement, I was, of course teary, but I full on ugly cried when she asked me to be her matron of honour.

I worked on my speech for days and days. Running it by anyone who would listen.

And it was, perfect.

And now, we, with heads down, ploughing along, are two old married women with kids and husbands and pets.

Girls, three girls, that are amazingly suited for each other. And as long as they live each one will be one year in age ahead or behind the other. Right now, they are 4, 5, 6. And it is perfect.

When we all pile into a plane, in a few years headed for a long ago planned ‘family’ trip to Disney, the girls will be 8, 9, 10.

I know, I believe, I can guarantee, that they have their own future ahead of them filled with, if nothing else, laughs.

I’ve said before that Tasha is the sister that god or genetics didn’t give me. And what I mean is that, what we have, the bond we share, could never have been born to us. It is just one of those cosmic, crazy, unexplainable, freak of nature occurrences that you just accept, because there is nothing else you can do.

We can go days without speaking and pick up right where we left off. I knew she was there in the hospital with me, before my surgery, even though I was totally out of it at the time, I still felt her presence.

She is one of the first people I run to with new MS related news. She’s one of the first people that I would run to if we needed anything and I know she would be there.

And I know, if she ever her let herself need someone else, it would be me.

She is strong where I am weak, she is brave when I am scared out of my mind and she always holds my hand when I fall.

And I love that we are so different, that we are the same. It’s amazing. It truly is.

Have an amazing weekend!

Making Due

2011-06-20T16:43:00.000-03:00

Song of the Day: Make Some Noise - Beastie Boys

Yesterday was Father's Day and we had an amazing day out planned.

First up was a car show in a cute little community about 20 minutes away.

Rained out.

The picnic that was planned for after the show, featuring homemade artisan sandwiches and a really cool pasta salad was forced to be had on the floor in the living room as the picnic was also, rained out.

Fishing was up next. We took advantage in the break from the rain and the light from what looked to be that familiar yellow glowing orb poking it's way through the clouds, to go and dig for worms. And when I say 'we' I mean 'them'. I didn't dig for worms. But I did stand beside them while they dug.

Getting soaked. In the rain betrayed by the promise of the sun, again.

With rods and worms packed safely in the trunk we went fishing in spite of everything and tried to make the best of it.

But it was cold, damp and rainy.

We left, defeated but not broken.

We celebrated the fact that the three of us were together, and that on Father's day, nothing else mattered.

We watched some old, crappy western movie and when that was over had a BBQ.

The sun came out and it stayed unobstructed from the clouds in the sky where it belongs and all was good.

We made due. Made due with what we have. And what we have, is Right Now. And, of course Tomorrow too.

Happy Monday!

Seriously? Can we go?

Shout Out!

2011-06-17T11:11:00.000-03:00

Song Of The Day: Love You Madly - Cake

A Shout Out to all the dads, daddies, fathers, pops, and pa's.

To all the expectant, single, widowed, and divorced dad's.

To the sick dads, ill dads, gone from us too soon, passed away dads.

To all the sick with worry as their teenager drives alone for the first time dads, or the sweating with the perfect mix of I'll-punch-his-lights-out-if-he-hurts-her-but-I-hope-she's-happy while watching their daughter date the guy that's just like him, dads.

Don't ever underestimate the power of the Dad. Just ask any girl, little or grown, about her dad, and watch the smile rise up.

Happy Father's Day to Jerome and Gary. To Mike, Kris, Dennis, John and Randy. To Ray, Doug, Nick, Bruce, Harold, and Jack. To Kevin, Chris, Greg, Dan and Spike.

But most of all, Happy Father's Day to Gracie's Daddy!

Delayed Excitement, Prolonged Memories

2011-06-13T11:13:00.000-03:00

Song of the Day: Common People - Pulp

I’m trying to not let myself get excited. And luckily there is enough work to do and enough need to budget for rests that I’ve been too preoccupied to allow myself to get giddy.

We received an offer on our house on Saturday! That exclamation mark is for punctuation purposes only, because, like I said, I’m not allowing myself to get excited.

The purchasers have asked that we close on the house in a month. One month. One month!! Yes, I did it, I pulled the double exclamation.

It was the best offer we have received, actually it was the only offer we received and after 97 days on the market, we weren’t going to whine about a measly 30 days.

But we don’t have a house to move into and the prospect of having to pack a house worth of stuff into a storage facility and rent somewhere until we do find something offers so much anticipated stress and worry that I have buried myself in the happy memories that were born in this house.

Like the first few months in a new province, where our only solace from being the outsiders was to come home, in the woods, to our new home. Surrounded by trees and rock we were determined to start anew.

And we did. We built an enormous perennial garden out of the rock and loaded it with soil and mulch and it took the next six years before it became the work of love I had envisioned.

Then, we had a baby.

Nothing makes a family, a home, a heart, complete like a baby. And the meaning of this house changed completely. Now the memories weren’t just mine and Steve’s they were Grace’s too. And this would be the home she would remember as the first place she ever lived.

And we planted grass and the rock became forgotten because sliding down the front hill in a toboggan is much easier when the snow is covering grass.

2009

2007

And the memory of Grace touching grass for the first time in bare baby feet will always, in my memory, take place in this yard. Our yard.

We changed the shutters, the front screen door that now makes the perfect ‘SLAM’ and we added one to the back door too.

There were 6 Christmases, birthdays, Graces’ 1^st birthday and subsequent following years of birthday parties, there was the family cat that came with us on the move, lived another 3 years in Nova Scotia and the 2 new family cats that grate on our nerves the way annoying relatives do but you love them anyway.

2008

2010

There is the front living room window through which the sun pours and is where I sip morning coffee and watch the world go by. Which is often only neighbours walking dogs, but it’s my world, and I love it.

Before: Ugly vinyl flooring

We renovated the kitchen, painted almost every wall in the house and added a wood stove in the family room.

After

There were all the bear, coyote and racoon sightings. There was the year that the rabbits ate all my pansies. All of them. Living amongst wildlife is something you just don’t experience in the Great Suburbia.

The year the Lilacs were planted. The year we gave Steve the Apple tree for Fathers day.

The year the community almost lost everything in a huge forest fire that took acres upon acres of land.
When you flee the house, the neighborhood, you love in a police led evacuation which was followed by a 3 day blockade, with only the clothes on your back and the memories in your heart, you know the true meaning of love, life and togetherness, because really, some days that’s all we have anyway. When you watch the smoke billow into the sky, from an office in Halifax, 30 minutes from your home, you panic because surely your house could not have been spared. But it was, and now Friday the 13^th has a new, scarier indication.

There were tons of family members and friends that came from Away to visit and fill the house with their laughter and love.

And then there was the day I came home from the hospital. Climbed those stairs, and moved the hell on with life.

Sort of.

It’s because of those stairs that we’re moving. Well why we’re moving right now.

We had planned to move in 5 years because we figured by then we’d have enough money saved, enough equity built, to purchase a house on the lake. The forever home.

MS didn’t give us enough time to save that money, so the house on the lake plan is a maybe one day for retirement plan now.

Which makes leaving this house that much more difficult. We don’t want to move, we love this house and that feeling is amplified every time I hear Grace’s tiny voice while asking if her bed is coming with us or if we’re taking the windows or the doors.

And it’s harder without a house to look forward to moving into.

So, while I should be excited that we finally received an offer, I’m too busy to get excited because a house with 6 years of accumulated stuff needs to be packed and a new house needs to be found, purchased and moved into.

Only then I will be excited.

For the memories about to become forever in my heart.

Happy Monday.

Stages

2011-06-08T15:17:00.000-03:00

Song of the Day: I Will Survive - Cake

We’ve all heard about the Five Stages of Grief. You know, Denial, Anger, Bargaining, Depression and Acceptance. This model is applied to many different situations in life that involve some form of loss. Death, Divorce or Illness fall among the most popular, but there are of course many more situations in which one is forced to rally through the 5 stages. I am seeing my good friend go through this with her recent separation from her husband. Right now, she is fighting it out somewhere between Anger and Acceptance. I watched my mother in law go through all of these stages when my father in law finally succumbed to cancer. I, myself, have gone through these stages. I spent the most time on both Anger and Acceptance.

Which is where I find myself now. On the final stage, only, I wonder, why there aren’t varying degrees of Acceptance, like what happens afterward?

So, let’s recap my 5 stages: Denial, wasn’t one I spent too much time on, I was more in shock than anything else. I did have some moments of ‘this can’t be happening to me’ but they were fleeting because Anger is one dominant bitch that insists on riding ‘shotgun’ to no one. I was angry for being in the hospital, I was angry over the flip-floping diagnosis that encouraged the repeating of the first 2 steps an inhumane amount of times, I was angry because I was in the hospital missing out on Grace, Steve and my career, my students. I was angry that this was the hand I was dealt. I never Bargained, not for my life when I thought it was cancer, and not for my life when I knew it was MS. Who does an agnostic bargain with anyway? Depression, well, that’s a tough one. Of course I was down. I was stuck in the world’s, or at least this country’s, most disgusting hospital, who wouldn’t be depressed? I really feel though that the most time at any stage was spent on Acceptance. Because, there just isn’t any other way to live.

Adapt or Die right?

But, to say, ‘ok, alright, I have MS’ is totally different to saying ‘ok, alright, I have MS’ and actually living with MS. Excuse me, I mean, saying ‘ok, alright, I have MS’ and living in spite of MS. Yes, spite should be a stage of Grief for all of us that go on living to show life who really is in charge here. To show that although life may have handed us a crappy hand that we still go on to win the pot, still go on and all the while we’re flipping life the bird.

Because we have not only accepted our fate, but we’re going to rock it out while we do it.

I have only recently entered this ‘off the beaten path’ to Acceptance. Up until now, I accepted my life as a life that included MS. But I was very conscious of how exactly others would accept me with MS.

While in the Rehabilitation hospital I refused visitors other than Steve, Grace and my parents. I didn’t want anyone, under any circumstances, seeing me in a wheelchair, or trying, struggling to try, to walk. I also didn’t want anyone seeing me in that place because I’m sure that there would have been a few of my friends and family that would have not known better than to blow up on some unassuming nurse about why that place is not condemned. And that would have just been embarrassing. For everyone.

The first time I saw anyone during that period of time was at Chris and Emma’s wedding. I was still wearing the hospital bracelet and was out on a weekend pass. Wearing an AFO leg brace and using a cane with a wheelchair on backup, I allowed the world to see the MS me. I was terrified. At a pre-wedding get together I heard Emma tell Chris how at first she didn’t even know I was there until she heard me talk, and how I sounded so normal. I cried to myself hard that night in bed. And although I know that Emma was reacting as anyone would react to being shut out of a person’s life while they recover from paralysis brought on by a mystifying MS attack that left me almost senseless and in need of a brain biopsy. Without any contact with me there was no way she wouldn’t have thought otherwise. I get it. But it made me realize that people had an expectation. An expectation for the unexpected. There is no manual on how to prepare for that.

So I avoided it. Or tried hard to ignore it because sometimes it was unavoidable. Like when I still didn’t have my license back and relied on neighbours Lenna and Jenna to take me to physiotherapy appointments or for blood work. BBQ’s were tough because almost every deck has stairs to get to the dining area, so you have to go through the house and people you don’t know or haven’t seen in a very long time ask you what happened to you leg? Did you break it? Sprain it? MS? Wow, really? And then I’m MS chick for an hour and it’s hard to hide it while you explain the entire Journey Through Hell. And then you hear all the stories about the so and so’s they know who have or had MS and how they are either so normal you can’t tell or they died. I’m serious. And then of course there is the discussions focused on whether or not I’m going to Bulgaria for the ‘cure’. And then the ensuing explanation about CCSVI and my stance on the topic etc etc etc.

My saving grace was when I graduated from AFO and cane, to just cane, to nothing. And then it was super easy to hide it. And thus another stage of Acceptance: Pretending everything is normal.

Pretending everything is normal and denial are very different. I had accepted the diagnosis, the pain, the fatigue, the needles, the pills, the B.S. But I hid it because I didn’t want the focus of my life to be this disease. I wanted desperately to be able to seem normal just like them so that no one had to know about the MS thing. So I avoided the MS community completely for months because when you are part of a community you can’t get away with pretending you are not what you are that made you part of that community. I avoided eye contact with anyone in a wheelchair or with a cane. I was not like them. I had been like them, but I wasn’t anymore.

Then, I had a relapse.

I was scared, petrified actually, that the jig was up and my cover was blown and that the entire world saw me as a fraud. And then, through all the stages I went through that particular time while recovering from that flare up, I realized that I was kidding myself.

I threw myself out there. And, I screamed to the world that I HAVE MS. I have it, and this is what I’m doing in spite of it all: I’m living!

To live with MS, to be a wife with MS, to be a mum with MS means pretty much the same to me as to anyone else, you live within the confines of your limitations until they are no longer limitations or you move the hell on. Oh, as life goes on and the disease progresses, I’ll still worry about being the mum with the cane and what Grace’s friends may or may not think of me or her. Oh, I’ll still worry about being able to dance at her wedding. I’ll still worry that Steve does way too much around here and I’ll let guilt take over from time to time about not being the household-keeper-upper that I want to be. But I won’t exclude an entire group of people from my world because they too were handed a crappy hand in life and to see them is just too painful for me.

No, because I have too much to offer their world and vice versa.

Oh, it’s on.

Acceptance is a great stage, but allowing yourself to see the possibilities that acceptance brings you are even better.

And the possibilities are endless.

Rock on. MS or not. Happy Hump Day!

Awesome

2011-06-06T12:15:00.000-03:00

Song of the Day: It Doesn't Matter Anymore - Serena Ryder

Oh, it’s not been good around here. And for once, my MS is ok and everything else has gone into the gutter.

There is a man who is legally or illegally, hard to get a straight answer around these parts of the woods, building a road for access to either cut down dead trees to prevent the spread of inevitable forest fires, to allow access to another road for access to a local business, to develop houses or to develop a nursing home. We’ve contacted all the appropriate powers that be and they have no idea what’s going on either.

Vague, I know. What I do know, is that this road to whatever is precisely on the line of where my property becomes his.

We had our third second showing on Saturday. At 7am on Saturday the man, with a jackhammer attachment at the end of the excavator arm, started to break up the bedrock. Halifax Regional Municipality doesn’t have soil, it has granite.

Our showing was at 11am.

They’re still thinking about it.

The man took the rest of the weekend off but was back this morning at 7am. Jackhammer in tow.

So, I’m taking solace in the art of creating good memories, like the ones that were created this weekend.

A visit to Kevin and Tasha’s resulted in an impromptu outing to the carnival. We had told Grace that we would be doing this, but Cadence and Norah (Kevin and Tasha’s girls) had no idea until we got there.

I’ve been reading The Book of Awesome and thank god I started it when I did because I’ve been in need of not only a good book but a good laugh. Like the laugh you laugh until you cry but still can’t put the book down even though you can’t see to read through the tears kind of book. And The Book of Awesome is just that kind of book.

So, in the spirit of this awesome book, there is truly nothing more awesome then the look on your child’s face while on her first carnival ride or her sense of accomplishment upon winning a bear at a carnival game all by herself. What is even more awesome is that as a parent you can suppress your, likely irrational, fears of whether or not the welding on the Ferris wheel are done to code or that the bolt you found in the parking lot isn’t the piece that could lead to a major catastrophe and just enjoy the sounds of the giggle-scream coming from the mouths of three best friends.

I laugh at the look on Norah's face because I'm pretty sure the ride wasn't moving yet

Norah, Cadence, Grace

I pretended not to see that the number of their car was the number 13

Now, since the man has taken a break, I’m going to have a nap.

Have and Awesome Monday!

For Love and Lilacs

2011-06-01T12:29:00.001-03:00

Song of the Day: Hard to Explain - The Strokes

I anticipated a few days of R and R after the walk. The walk was 3 times the length of anything I have walked since before my diagnosis and the reality of that sunk in late Monday night. The aches, the pains, the whining and complaining. And as fate would have it, all of my bitching was timed precisely for when Steve’s Man Cold kicked in.

Needless to say, it’s been ugly here lately.

To back up, we realized about two months or so ago, that Grace was miserable with our current daycare situation where she goes every day but Thursday to keep our full time spot because if and when a potential flare up left me unable to care for her we would not have had to seek out an alternative.

Well due to her misery, we have officially downgraded to part time. She is now home Tuesdays and Thursdays. And since she’s beginning school in September which I’m hoping by then I’ll be back to work, we really don’t need a full time spot any longer. I’m feeling fairly well and an every other day situation is a really good happy medium for all of us.

And yesterday was our first Tuesday and we had an awesome day planned that involved a fresh fruit breakfast, a picnic lunch and flower shopping at the garden center followed by an afternoon of soaking in the sunny day planting our new floral acquisitions.

En route to the garden center my phone rang. And yes, to all my Mountie friends, I did pull over and took the call. On the other end was Steve telling me that our realtor had called and requested a showing for 7:30pm. The time of that call was 11:00am. Crap.

A failed attempt was made to have the people reschedule for the morning so that I wouldn’t have to be so rushed and we settled on 7pm so that at the very least Grace had a better chance of going to bed closer to her regular bedtime. A difference of a half an hour is a huge difference to Grace as far as sleep goes and really not that much different as far as time to get everything done.

Two weeks ago we had come home from Ontario and then the following weekend (last weekend) had the walk. In other words, the house was far less than show ready.

I’ll leave out the details for the cursing and swearing for your imagination.

Grace and I sped off to the garden center, raced around picking up what we needed and stopped for a few minutes to talk to a lady with two Boxer’s about whether they would be suitable dogs for us. We downgraded our picnic to a dining room table lunch and slathered on the sunscreen and bug spray and flew out the door to get planting so that we could fly back inside the house to get cleaning. Steve was taking time off work to come home to get the lawn in order and the trimming done.

At 6pm we still weren’t ready, my back was in agony from planting and there was no longer time to cook dinner.

Grace and I had showered off the greasy sun and bug shields required to wear constantly when you live in the woods in the summer and all that was left was to get dressed, hair done and downstairs so that Steve could do the final vacuuming in the bedrooms.

Well, when I’m rushing my hands don’t work well. They don’t work together. They drop things. They burn themselves on the still hot flat iron as I wound the cord to shove the thing in the drawer out of sight.

Tears. Lots of them. It friggin’ hurt.

And off we went for supper.

But not before we received the call from the Realtor telling us the people were running 20 mins late.

Again, I’ll save the swearing for your imagination.

I’m so done with this. It was 9pm before Grace was in bed last night. Her regular bed time is 7:30, and trust me, she needs that much sleep.

Anyone who has sold a house knows the disruptions that come with showings and the manipulation one feels to make your house more available, more marketable, is just something that comes with the territory.

And we get it.

However, I also feel a tremendous amount of guilt.

For it is me that we are moving. It is me that can no longer deal with these stairs and the future is a deep, dark, black hole and who knows how much worse my legs will get and do we really want to wait for that and then have to sell the house? No.

But I love my house. And I get furious and really swear-y when we get a last minute showing and our world flips upside down and then I want to throw in the towel and call the whole thing off.

Then I remember who’s doing this for whom and that I should just shut up.

They don’t want to move either.

Grace is done with putting all her toys away all the time for one never knows when the call will come for a showing. She’s done with leaving the house in her jammies for the 7pm showings. She’s done with ‘tense’ mummy and ‘silent’ daddy.

Steve would love to spend some much needed time in the garage doing garage type stuff, but the mess is too big of a deterrent.

No one can relax. No one can breathe. And it’s getting to be too much.

And the fear that we have joined the ranks of the Unsellables looms over our head. Two price drops, a landscaping allowance for the back yard woods and 3 months on the market. What would you think?

I know our house is not deserving of this reputation but my fears are now heightened by the fact that some new, unknown, unannounced, developing is going on right beside us.

Added to the stress of our own house not selling is the fact that all appropriate bungalows on the market in our area have sold.

But, as the days go on, and warm up and my garden begins to flourish and the lilacs are setting up to have their best year yet, I can still smile.

This yard, this home was built by two people who never intended on having children. And now two have become three, and we’re all in this together. The lilacs that took years to blossom, and blossomed last year for the first time as I was leaving the hospital, have doubled in blossoms this year.

It’s painful to know that someone else will get them as they approach their best years. But for now, they’re still mine. They’re still ours and we still have time to enjoy them.

Because, no family knows better, that tomorrow can always be worse and as long as today is ok, go ahead and smile.

Tough As Nails

2011-05-30T12:58:00.004-03:00

Song of the Day: Rise - Eddie Vedder

As I lay in a hospital bed last year, right after my brain biopsy, in my fog of not quite conscious, not quite unconscious, I developed a list of goals. A list I would never write down, for fear of someone holding me to it. For fear of someone knowing whether I had failed or succeeded. The list was just for me and there was no expiration date, no time frame. Because, when I was making the list, I didn’t know how much time I had left.

I’m choosing to reveal this list of goals with all of you now, because, by god, the list is completed!

Well, pretty much.

As I lay in the hospital, getting out of the room, via gurney, only to go to treatments, the first and foremost goal was to one day walk again.

It was at the Rehabilitation Hospital that this goal was achieved. I walked again.

The next goal, was to get out of the hospital, to walk out of the hospital. And I did, 8 weeks and 4 days after arriving unable to walk, I walked back the hell out. I went home.

The next goal on the list was to speak at the graduation ceremony at the college where I teach. Check!

Next, to lose the wheel chair, cane and AFO brace. Check!

Next, to get my driver’s license back. Check!

Next, to walk in my purple shoes. Sort of checked off, I’ve walked in them, but not outside of the house.

A goal on that list was to go back to work, but a relapse and several new or potential health issues have been making that difficult, but that’s for another list currently under construction.

Finally, the biggest goal was to walk in the MS Walk. Check! Check! Check!

As I look around my house right now, there isn’t a room without at least some of the swag Grace managed to accumulate yesterday as she and my mum waited at the finish line.

Of these items, which included a balloon, face painting, ribbons, carnations and an annoying Thunder Stix which from far away Steve and I thought was an inflatable hot dog wiener, to which we couldn’t see a connection between it and MS, my favourite would have to be the clip on button that lights up and flashes to proclaim, that I was a Top Fundraiser.

$2017.34 raised by wonderful people, for a most deserving cause.

The day was full of unexpected, wonderful surprises. Most notably was the weather. It was supposed to pour down rain. But as we began our 30 minute drive to Dalhousie Memorial Arena in Halifax, equipped with rain coats and umbrellas, the clouds retreated and it was a beautiful, warm and sunny day.

Another great surprise was the alteration in my attitude, my perspective. I was surrounded by people doing this, participating in this walk, for people like me.

I saw able bodied people but it was those that were not so able bodied, the ones with the rolling walkers, the lady with the oxygen tank, the folks in the motorized wheelchairs and the several with canes, that took my breath away. And not out of fear, out of pride. For once in this past year, I felt part of something. We were all in this together.

Getting ready to embark on our route, an army of red flowed through the door. Team Daddy.

Oh, the emotion that swirled in my heart as I walked, arms out stretched to my new, beautiful, wonderful friend, Sarah. Who walks for her husband, for her family, for an End to MS.

It was going to be a great day.

But it was tough. It was long and hard, and hot and tiring.

I was flanked by two of my biggest supporters, two of my biggest fans, my two favourite men in the whole world: My husband and my dad.

The fatigue, both muscle and mental, started to set in by the rest stop. Which we figured was about half way of what we thought was a 5km walk. (It wasn’t half way, and it wasn’t 5km. It was just over 6km. Uggh.)

After water, an apple, granola bar and several stretches I was ready to go again.

My spirits were up. I was doing this. Slowly, but I was doing it. At one point, I mentioned to Steve that I felt bad to be walking so slow and holding others up. I relaxed when Steve reminded me that the people behind us are walking for people like me.

After several slowdowns, breaks for stretching and rests along the route the end was near. But I was done.

Oh, so done.

My ankle had turned over, which it does when I’m extremely fatigued. So we sat down. I stretched and wondered if I could walk the last little bit or if I’d have to summon one of the support vehicles to drive me the rest of the way.

And then, three lovely people, a mom, dad and baby in a stroller, came by.

All wearing red.

Team Daddy.

“Are you guys ok?”.

“Yup, just taking a rest.”

“Oh, wait. Are you Angela? Angela from the blog?”

Me being a sweaty, tangled mess, was not how I had pictured my first meeting with a fan. [Ok, for the record, I’ve never daydreamed about having fans. And, this encounter was wonderful and weird all at the same time.]

“Yeah, that’s me.”

“Well, I’m John, Jeff’s brother, from Team Daddy. I just want to tell you that you are doing a wonderful job. You are doing a great thing.”

If we had of been on the water, if we had been sailing, that right there, would have been the wind in my sails.

It was all I needed to get up and keep going.

Then my ankle turned over again.

As I sat there, tears welling, heart broken, finish line literally in sight, my dad said ‘you take all the time you need’.

The little voice in my head was screaming to me, this time last year, you were in a hospital, with an inpatient bracelet on, you couldn’t walk unassisted, you are not going to not finish this, because you CAN finish this!

I got up, I stretched, and the most beautiful thing was said to me, by my dad: ‘My god, you're tough. Tough as nails. ‘

With tears streaming down my face, and with Grace in sight, and Steve fulfilling his role as Papa-razzi, I crossed the finish line, embraced my little girl and cried harder when she asked me “Mummy, did you win?”

Oh, yes Gracie, today, I won!

With Sarah from Team Daddy

And, we're off!

Rest Stop

Crossing the finish line

Meeting Vanessa from the MS Society

Whoop!

I'd like to give thanks to the following people for their extra special effort in fundraising for and End to MS:

Dan for raising funds at our local Pub

Cassie for raising funds by selling raffle tickets for a beautiful gift basket

My place of work for raising $725 during a series of dress down days and Steve's work for raising $123 during a BBQ.

Also, to all the people who pledged whether online or in person, those who randomly handed us money for the cause and for all of you who cheered me on along the way~Thank you!

You, and people like you, have made it possible for me to hope for an End to MS.

Watch for Team Gracie's Mum in the MS Walk 2012!

Have a wonderful Monday!

A Dedication To All The Gracies

2011-05-27T10:19:00.000-03:00

Songs Of The Day: 1.2.3.4. - Feist (both regular and Sesame Street versions)

In preparing for MS Awareness Month, as you know, I approached several people and asked them to think about providing guest posts. In all, I had a great response. I was able to help tell the story of a fellow mom

with MS, a dad with MS and the spouse of someone with MS.

What I was unable to obtain was a post from a child of a parent with MS.

I spoke to several people regarding their mom’s MS and to one person regarding her grandmother who had MS.

It was intriguing to experience the responses. None of the children of a parent or grandparent with MS was able to share their story.

Many, although they wanted to, felt they couldn’t get their thoughts and memories together in order to appropriately tell the story they had to tell.

Another issue, shared by all, was that to retell the memories, to broadcast their thoughts, was far too painful.

My thoughts quickly shifted from intrigue to fear.

In a candid conversation with a friend from Ontario about her mother’s MS, she revealed that “MS took the spontaneity out of going out for dinner, shopping and many other things. Most of our activities had to be carefully planned.” This same friend remembers at a very young age noticing her mother having to take rests along the way from home to the bus stop and that shopping eventually became difficult due to the narrowness of the aisles and the width of her mother’s wheelchair.

To the average person who has never experienced a parent with a chronic illness these examples probably mean very little. To a parent who has MS, who has an active child and a passion for leading a normal life, these examples are frightening.

I do feel a sense of relief in knowing that Grace will likely never remember a time in which I didn’t have MS and therefore will probably never lament or mourn the loss of those easier times. What I can’t come to terms with is that she will likely mourn and lament the lost opportunity to have a normal, easier life.

To have a life where mummy, not just daddy, can run and play in the yard. A life where mummy, not just daddy, can ride a bike to the store to get slushies. A life where mummy, not just daddy, can walk the beach for hours combing for rocks, shells and beach glass. A life where mummy isn’t always needing to sit and rest. A life where mummy is always present, not always needing to lie down. A life where mummy’s, not only daddy’s, legs work and work all the time. A life where the house, and location of that house, isn’t determined by what mummy can and cannot do. A life where planning is because we want to, not because we have to. A life that isn’t measured in spoons. A normal, easier life.

Too many times already I’ve noticed how much she has been forced to mature beyond her years. Too many times already she’s been the one consoling me. Too many times it’s been her little arms wrapped around me, or rubbing my back during one of my weeping, sobbing breakdowns. Too many times she’s asked me why my leg shakes or why I’m tired. Too many times she’s asked me if I need my cane, would I like her to get it for me. Too many times while at physiotherapy or doctor appointments I’ve had to explain a walker or wheelchair. Too many times I’ve heard her say how glad she is that I’m not in one of those anymore. Too many times, I’ve heard her say how glad I’m home and that she never wants me to go to the hospital again. Too many times I’ve seen the wordless expressions on her face, that tell me just too many of her fears.

And that’s just not fair.

I’d be lying if I didn’t say how much anxiety I feel when I’m at the MS clinic or preparing for an MS event like the Walk on Sunday. I’m anxious because I have not totally come to terms with this diagnosis anything beyond what I have personally experienced. The depth of this disease is not evident until I’m around others with it. And sometimes it takes my breath away. I imagine a likeness to my anxiety to that of a newly diagnosed cancer patient who arrives at their first round of chemo. They expect to lose their hair, develop a pallor complexion and lose weight. But it probably never really feels real until they see those waiting for their own chemo rounds and are on their 4^th, 5^th, 6^th, 10^th, and 14^th round. Some have hair falling out, some have only tufts remaining and others are wearing scarves or hats to cover their bald heads.

Reality becomes visible. And you are left raw and open. But in spite of that you need to remain warm and loving, cool and collected because you are a mum and your little girl wants to know why you’re crying. Again.

You’ll always hear people say that a parent should never have to bury their child. Same is true for a parent having to be cared for by their child. It should never have to be that way. The parent should always be the parent, the child always the child.

When Steve’s father was very ill with brain cancer and in a palliative state at home and my mother in law required help from Steve lifting and bathing him, I watched and cried over the role reversal. And now I cry at the potential for that very same role reversal in my own home, with my own family.

And so I walk. I walk, I raise money, I nag, pester and plead for donations so that Grace will never have to lose her childhood to MS.

This post is dedicated to all the Gracie's of the world. To Kelly and to Kendra and to all the children that have lost a parent to MS, whether in life or in death.

I walk for you and for me.

Have a most amazing weekend!

Walking For Daddy: All For One, One For All

2011-05-26T12:28:00.001-03:00

Song Of The Day: Crazy - Gnarls Barkley

The final guest post in celebration of MS Awareness Month is from Sarah Oldford, a mom and wife in a family where the dad has MS. She’s the much overlooked, mostly silent, ever vigilant supporter, advocate and slack-picker-upper that is the under glorified yet incredibly important role of a spouse of someone with MS.

Much like our house, Sarah and her husband Jeff approach their battle with MS as a family, as a team. Just like in any battle if one troop falls, the others must pick up the slack to preserve the integrity of the unit. Sarah knows what to do and when to do it so the family remains in motion, together. What Sarah doesn’t know, or at least the exact extent of, is the frustration that comes with watching. Helplessly watching. Like me, Jeff, I’m sure, experiences a supreme level of guilt and frustration knowing that on days where he can’t do the things he normally does to help the family run smoothly, need to be done by someone else. And more often than not, that someone is Sarah.

The devotion that Sarah has for her husband, for her family, is personified in her quest to end MS and is illustrated via Team Daddy and on her blog. To date Sarah and her team have raised in excess of $12,000 in pledges for the upcoming MS Walk in Halifax.

I am grateful for people like Sarah and, in my case, like Steve. Who experience more than most the deeper meaning of their vow to honor and cherish their spouses in both sickness and in health.

With much pleasure I share with you Sarah’s story and for more information on Team Daddy’s progress check out Sarah’s blog!

Supper at the Oldford house is chaotic. It's chaotic on the best of days, just like anyone else's house. What makes our house different is a day like today. A day when Daddy stayed in bed because he was unsteady, so Mommy also took on daycare drop-off and pick-up, cooking while occupying kids and - oh yes - worrying that Daddy wouldn't be able to get out of bed.

I've written my blog for about 13 months now. One of the things I write about is the fear that when Jeff has balance issues, it will impact his ability to walk and therefore throw our lives into a stage of MS I'm not quite ready for.

Over the past few weeks, I've become acquainted online with Angela, who has lived through my biggest fear and come out on the other side mobile. Although we've never actually met I've noticed similarities. We both worry about the appropriateness of our housing. Are very reflective. Like taking pictures of family. Share a desire to change the background of our blogs. Enjoy random dance parties with our children.

There is one monster difference though. Angela has MS. I don't.

There is also a huge commonality - we're both moms.

When my first child was born I was overcome by so many emotions. Mostly a sense of relief to be done with the three and a half hours of pushing, but there was love in there somewhere too. As well as this huge urge to protect. I wanted to protect from the lab tech with the needles. From the unsightly stains in clothing caused by diaper explosions. From neck kinks due to falling asleep in the car seat. From intimidating lap dogs that wanted to eat him.

Now I want to protect them from MS. Not only from the slightly elevated chance that they may inherit this stupid disease, but from the lifestyle limitations.

It's a mom thing that Angela and I seem to share. Along with the other young moms that I'm sure share our fears.

MS is a disease that affects women more frequently in men. When Jeff was diagnosed, some of the responses we received were around this common knowledge that it is more prevalent in men. I wanted to scream 'Me too! I have it too! I have the same diagnosis!'. I also wanted to scream 'does anyone care about my stretch marks!' but that's another story for another time.

When he was diagnosed with MS in July 2008 my role as a mother changed, as did my role as a wife.

There is a certain amount of over compensation that the partner of someone with MS must do. That’s just a fact. It's something you do without question. You want to minimize their suffering which means you try to remove any other stresses from their path. Which puts them directly in yours. Not unlike mothering, while I think about it.

Watching your spouse deal with MS is heart wrenching. Understanding the impact on your own future is heart wrenching as well.

Selfish? Yes. But true. And don’t get me wrong - the shoe could be on the other foot and I don’t doubt that Jeff would feel the same way.

MS is an unpredictable disease. As the 'steady' one in the relationship the unpredictability is terrifying. I sometimes feel that if these things were physically happening to me I would be able to anticipate and respond in a manner that would allow me to control an outcome. But I know that wouldn’t be the case.

When you (or your family) has MS there's no escaping it. Or predicting it. Whether you are the mommy, the daddy or the kiddos it’s going to hit. It may hit hard or it may feel like you dodged a bullet, but in the end there’s always an impact. It’s your relationships and your sanity that need to survive. Just like any other trial you face.

Even after only a year, I have forgotten what it is like to not have MS, and although in my heart if it were Steve who had MS and not me, I know I'd willingly and with devotion, take on the role of the MS spouse. But if I try to picture it now, I can't forget about having MS and can't remember what it feels like to not have it. And feeling like this, with MS, I can't imagine, ever having the strength to do what Sarah and what Steve do.

All day. Every day. Forever. One person has the diagnosis. The family bears the weight. Together.