Tag Archives: Inspiration

Bicycles

Today, my 15 year old son grabbed two of his friends, hopped on his bicycle and they all rode 20 km into Wolfville together. They went to their old middle school and visited all their old teachers (one of whom he was sad to have missed). Later they met up with two other friends and played basketball, ate at his favourite pizza place, and tried out the hot new ice cream spot.

That is what they did. That was his day.

And in case you missed the important part of this very boring story let me say it again. Today. June 20th. My 15 year old son, who is now taller than I am, got on his bicycle – with a beating heart, lungs full of air, and healthy blood pumping it’s way through his healthy body to drive to Wolfville. Today. June 20th. He came back exhausted and sweaty and beaming from ear to ear having hung out with his friends. Having driven 20 km together. On a bicycle. On June 20th.

And let me say … bicycle ….well …. bicycle quite simply trumps ambulance.

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Today

Today I woke up at 5:15 am.

I kissed the kids and Craig goodbye as they left for school and work, and then went off to work myself. It was another day. A day that felt heavy because of worries I thought were real.

Today Craig went to work. He got dressed and prepared for meetings.

He made his lunch and read the news. He drank his coffee and left in time to get to Halifax.

Today Mark dressed in bright colours for Pride Day at school. He thought about Badminton try outs and tried not to be nervous about them.

He prepared to navigate the halls of high school as a 14 year old boy.

Today Megan submitted her courses for her final year at Horton. She donned a bright headband and bracelets for Pride Day.

She went to school incredibly proud to be partaking in her very first Blood Donation. She left voicing why she wanted to do it and her pride and determination to do so was palpable. She wanted to give life.

But today as she was giving life, as all of this was happening, as we were going about our everyday-day, thinking we knew what “heavy” was, our Jadyn, our SuperGirl, our light, our love, our positive shining star, took her last breath.

This wasn’t supposed to happen today.

But it did. It doesn’t feel real.

But it is.

And so I can’t let today go by without this:

We love you Jadyn. We will remember, honour and celebrate you. We will whisper thank you for all that you taught us about strength, optimism and courage. We will remember to laugh in hard times, to have close friendships, to be silly, to keep smiling, and to give back to those who have helped us along the way. This is how you lived your life and we promise we were watching and listening.

We promise we will do all of this … we will make you as proud of us as we are of you …. next year, next week, tomorrow … and even today … March 6, 2018.

Where My Gratitude and Optimism Fail Me

My daughter Megan started her first real job this past Spring. You know – the kind where she has paperwork to fill out and the Canadian Government is aware of her pennies earned.

She was hired as a Swimming Teacher and Lifeguard for a local University, and as I dropped her off for this new stage in her life, like so many moments lately it seems, I thought to myself “How did we get here?”

But I didn’t lament this to her, instead I smiled, waved goodbye and headed back home.

She taught for five and a half hours and every minute that went by I thought about how she was doing. I couldn’t wait to hear all about it (note the artful use of “I” in that sentence. “I, I, I, me, me, me. Sigh …..)

The hours crept by and soon it was time to pick her up. There I sat in the Acadia parking lot waiting with eager anticipation.

Now keep in mind this isn’t my first time to the rodeo. Meg is 16 years old, quiet in many ways, and like many teenagers is used to being somewhat guarded with her feelings around her Mother (who only in the last year or so has started to gain some credibility as a real human being in her mind!)

And hey – I’m a 44 year old educated professional – I know all the ins and outs of effective communication – ask open ended questions – don’t assume – probe -but only gently.

Yup. I had it going on. One skilled communicator. Check.

Until I opened my mouth.

And the following sentence came out:

“So how was it?”

Now I know. I know what you are thinking. 

It’s a pretty damn good sentence. 

Honestly. It is.

Short, unassuming, conscience and open ended.

Sure it is.

On paper.

But it’s me. Have you MET me?

Those four words in print are an entirely different beast when spoken out loud by Mamma Wilkie. Because they are, in my world, spoken with a vocal enthusiasm, optimism, assumption and gratitude that is unparalleled.

Always.

And let me tell you – it’s not always helpful.

So there I am with my high-pitched sing-song eager voice spouting those four words. 

So how was it?

Cue the completely unintended (but none the less present) expectation that the correct answer is “incredible!”

If dancing unicorns wearing rose coloured glasses could have flown out of my mouth they would have.

Oh my. OH MY!!!

I truly don’t mean to do this. And I so much don’t want it to be how I come across. But I have realized I often do. I have also realized that somewhere, somehow, the following happens:

Instantly the air is filled with an unspoken expectation. The bar is set. And we as a family are going to clear it. We are going to be the most thankful, optimistic, positive family this world has ever seen. Because we have been given everything. Everything. E-v-e-r-y-t-h-i-n-g.

We get to be the lucky ones. And so we give back 100 fold. We are grateful 1000 fold. We have perspective. We know what the most important things are in life. Period.

Wow. 

Hold on there Miss Karrie-Ann. 

That’s a bit of an unreasonable bar there isn’t it? Let’s take a minute.

It IS a pretty tall bar – and written all over that bar says: We are over privelaged people who are so lucky to live, work and play in this incredible life. It says positive energy attracts positive energy. If you smile the world smiles with you. The more thankful you are the more you have to be thankful for.

Yup.

That’s me.

Blah. Blah blah blah blah

As we would have said in the late 1980’s “gag me with a spoon”.

But you see … the truth is … my unbridled raw truth is this … i believe in it whole heartedly … almost as a religion. That positive thought, gratitude and energy. It’s real for me – not trite or disingenuous. It’s not trendy or “just a quote”. 

It’s me.

But the other truth is this:

It’s not fair. 

It’s not fair to my family – especially those teenage ones filled with a myriad of emotions so close to the surface.

We all need to be allowed to feel what we feel when we feel it. We are all allowed really bad days. We are all allowed to not be brimming with gratitude every moment of the day.

So I’m learning. I’m learning and I’m admitting to my biases.

I’m learning that even if I’m thoughtful about what words I say or what questions I ask – I also need to be thoughtful about my tone, my eagerness, my anticipation and my unconscious expectations.

Because while gratitude, positive energy and optimism are among my closest companions, they can’t possibly serve me or my family in every situation all the time.  

Otherwise I’m little more than a cartoon character named Joy in a certain Disney movie. (A movie which by the way, gets 5 stars in my books … she says with no irony what so ever.)

A Boy in a Cape

My friends husband posted on Facebook this morning “New Years Resolutions. What are yours?”

I don’t make New Years Resolutions. I don’t really remember if I ever have. Maybe I did once upon a time. Either way I know it’s been a long time since I have.

I do however have a ritual of writing something down each year of what I want to come true. It’s nothing within my control, but I still physically write it down every year. I have a pretty strong belief that the universe listens more intently if you are in fact purposeful AND active. And for me there is no way to be more purposeful and active than putting pen to paper. Yes. Actual pen. No typing this one. So I physically pick up a pen. Blue ink of course. And I write the same sentence every year in the same Family Journal. It’s not pretty or artful or eloquent. It’s just one sentence, randomly placed on any page. But it happens in January of each year.

So no. I do not make yearly resolutions. I guess you would say I make a wish.

But his question DID get me thinking. What have I wanted to be more purposeful about this year? For me that’s always been the question in life.

One of the things I have been thinking a long time about is how important it is to put our intent into action.

Too long I have had the following sentence rattling around my brain. “I Wonder if You Know?”

Each year, each season, each month, and I hazard to guess each day, we encounter people who make a difference in our lives. Sometimes it’s a really big life changing difference. More often than not its a small, seemingly inconsequential, difference. But even if it’s the latter, it’s those small differences that build us up. Build our confidence. Build our character. Help us become the people we were meant to be in the world.

But here is the thing.

I don’t think we always do a very good job at telling those people the difference they make. Sometimes it’s because we are busy and don’t take the time. Sometimes it because it seemed so small at the time, and then later on it seems too late. Whatever the reason, I want to be better at it. Because from the moment I started whispering thank you those many years ago, I learned that you need to give gratitude a voice. It doesn’t have to be loud or pompous or all encompassing. But it needs to have a voice. Even if it’s just a whisper.

So this year, 2016, I want to start being better at telling people in my world the difference they have made, or are making, in my life. I don’t like to set myself up, so I won’t commit to a certain number of posts a week or a month or even the year. But if you want to read a few feel-good-true stories, I’m going to create a category here in Whispering Thank You called “I Wonder if You Know?”

My first post is about something that happened a little over six years ago. But I didn’t realize what an impact it had on my son until about six months ago. It’s not an earth shattering story. It’s not extremely long. But it mattered to one of the most important people in my life, and I’ve been ‘meaning to’ share it … because I wonder if Meaghan H. knows what a difference she made?

I wonder if she knows that six years ago she had a pretty big impact on my son Mark’s life? I bet she doesn’t. Because until last March I had no idea she did either.

At the end of Marks three year chemotherapy regime we held a Celebration for him. A party to celebrate the end of a long arduous time.

We invited only our closest family and friends. That of course consisted of my Fab Five Girlfriends from NB and their kiddos. We moved to NS just before Mark was diagnosed, so even though four years had gone by between the move and the celebration, these were still some of the people in our life we depended on the most – regardless of what Province they lived in.

I insisted that no gifts were to be brought to the celebration, and my friends and family knew well enough not to mess with that request, and they respected it whole heartedly. They did however bring cards, some purchased and some home made. And one of my friends daughters, Meaghan, brought a drawing with her. It was a portrayal of Mark in a cape. The title of it was “Super Mark”.

It was done in colour pencil and had inspiring words like “Way to go Mark” at the bottom in bubbles. It was very well done I thought for a girl the age of twelve (which I believe is what age she would have been at the time). Very well done. But at the same time, and boy I hope she takes this the right way, she wasn’t going to be giving Picasso a run for his money. Haha! Maybe she is now at the age of 18, but at 12 it was very simply a wonderful gesture and I remember thinking about how much time she must of taken, thinking about Mark as she completed it … and how much that meant to me … even if Mark at age six wouldn’t necessarily make that correlation of time and effort put into such a drawing. It meant even more because of the age difference between them and the fact that although they had certainly been in each other’s lives the past six years, but they were not particularly close per se.

She had put the drawing in a frame. I don’t remember there being any grand gesture of giving it to him. She did not need to be the centre of any attention. It was, very simply, a generous act of love. Something she felt she could do for a young boy to make him feel strong and brave.

There were many moments during the course of that day that would touch my son. Some of them big. (He loved animals and we had the local Zoo give him the opportunity to name a baby animal). Some of them encompassing (we collected fun band aids for kids in the hospitals and we counted them all that day). Some of them small. (We all went on the water slide at the hotel afterward … he talked about that forever.). Meaghan’s beautiful gesture seemed like “just” one of many wonderful gestures that happened that day, mixed in among an emotional day, it seemed to be, within perspective, very simply, one of many.

It wasn’t.

Fast forward six years.

Mark is on the verge of becoming a teenager. 12 years old, nearing 13, and he wants his room re-done to reflect the growing, young, active, vibrant sports orientated/animal loving kid he is.

His room is well overdue for a reno. And so we go at it. New paint. New furniture. New curtains. As I take down spiderman and toddler items I am throughly embarrassed at how long it has taken us to take on this project.

Everything comes off the walls and off the bookshelves. We make four piles. (1) Garbage. (2) Give Away. (3) Put Away in the Attic’ as a Treasure. (4) Put Back Up in his Room.

As I take everything down I make him put it in one of the four piles. There are things here I don’t even remember seeing before. Where did he GET all this STUFF? We grab old books and trinkets and photos and he makes quick and sure decisions. He is already much better at this purging thing than his mother is!

I reach up on the bookshelf, the second shelf from the bottom, the one that is best at his eye view at his height, and I grab a framed drawing.

It’s a boy in a cape.

I pause for a moment and think of Meaghan and that day. She is 18 now. That was six years ago. Where does the time go?

I hand it to Mark hoping he chooses by himself to put it in the “Attic Treasure” pile and not the “Garbage” pile. He is, after all, a twelve year old boy, and as I hand it to him I wonder if he even really remembers where it came from or if it just became “something that never came down” from a time long ago.

I think to myself “if he does put it in the garbage pile I will salvage it to the attic and tell him all about it when he is older.”

But as I hand it to him my hope of him putting it in the Treasure pile is not realized. It’s his choice. Not mine. And the thing is, that’s ok.

It’s actually more than ok.

Because you know what that kid did? He looked at the drawing and without blinking or pausing said “that goes back in the same spot Mom. Right where it was.” And he handed it back to me.

And so I put it back on the shelf. “Right where it was”.

And that was that.

I look at that drawing through new eyes now. I look at it through Marks eyes. I look at it as he has ALWAYS looked at it but how I never KNEW he looked at it. As something that made him feel strong and brave and courageous. As something that mattered deeply to him. And as something that so obviously STILL matters deeply to him.

I look at it on his shelf. In his room. Still to this day. Put there with conscious decision on his part.

And I think of that young girl, who is now a woman, who drew that for him. And I wonder if she knows what an impact she had on his life, as my boy laid there in bed every night, seeing that drawing, and thinking that someone in the world, other than his family (who is of course is ‘supposed’ to tell him he is amazing) thought he was brave and courageous and a super hero for the battle he fought.

I wonder if she did know what a difference she made?

So often we don’t.

But I’m glad she does now.

Thank you Meaghan H. You kind of rock.

The F Word

When I graduated high school and moved out on my own I remember one of my favourite things was decorating my dorm room, later my little bachelorette apartment, then basement apartment, townhouse and later homes.

Somewhere along the way I acquired a small nic nac. It was from the “country style” of decorating … you know … the kind that is made of wood and tole painted with those muted dark colours. It was three hearts that were stacked on top of each other in a pyramid style fashion. One heart said Hope. One said Love. And one said Faith. Although my tastes changed over the years, this little wooden nic nac followed me around from home to home. I don’t know why really. I don’t remember anyone in particular giving it to me so it didn’t hold any sentimental value. But there it was. In Halifax, in Guelph, in Riverview and back in the Valley.

Somewhere along the way the Hope and Love stayed glued together. But the Faith came unglued and dropped off. I would constantly set it back on top but something would inevitably happen and I would find it upside down hiding behind the other two.

I swear this story is true. And boy what a metaphor this turned out to be in my life!

Faith … in both a traditional and non traditional sense just never came easily or natural to me. It just didn’t. I struggled greatly with it. There would be times in my life that that would bother me, and there would be times in my life that I worked relatively hard at making that better for myself. There were moments when I actively pursued a greater sense of faith and felt like I was succeeding and growing. But somehow more often than not it still felt forced to me. There were times that building my faith seemed like something that a needed to go on a to-do list. “Find Stronger Faith. Yup. Must get that one checked off the list”. But mostly I came to a comfortable acceptance that faith was not a prominent part of my life. (Insert the shock and gasps here)

I guess maybe this all seems pretty normal for many people. Questions of faith are big questions.

But fast forward to having a child diagnosed with a life threatening disease … a severe, rare, life threatening disease, where the odds are not in your favour, and all of a sudden the whole faith thing … or lack there of it … seems pretty significant, and pretty damn scary.

So many people would tell me, “You have to have faith that everything will work out”. Oh my. That is such a wrong thing to tell this Momma. Number one, I’m pretty sure Timmy’s* Mom (our roommate at the IWK) had faith in spades …. but I still went to his funeral … and I’m pretty sure it wasn’t because she didn’t have enough faith. Number two, don’t tell me I “have” to have anything. (I know some of you reading this hear nothing but anger in that statement. But I also know some of you reading it instead hear in it ‘the experience of being given much unsolicited advice over a very long journey’).

So here is what I realized on my journey as a mom of a child with a very lengthy life threatening illness. I actually didn’t have to have faith. And it’s not because I didn’t think faith was important. And it’s not because I didn’t want to. I did in fact think it was important and I did in fact want to.

But I actually didn’t have to have faith because of two things:

(1) I had a tonne of other things in spades. I had the courage and the fortitude and the love and the gumption and the heart and the tenacity and the humour and the spirit and the confidence. I had all of that. I was brimming with all of “that” through this whole journey. I excelled at all of that. In a time of our lives where many would feel buried by the burden, I found myself able to bring all of “these” necessary qualities to the table. For me. For my son. For my family.

So here’s the thing, I allowed myself to not have the faith. And then I told myself that was ok. And do you know why? It’s because of the second reason.

(2) It’s because I allowed two other people to have it for me. It was just too much for me to carry. Like I said, it did not come naturally and it felt to forced for me. So I let someone else carry it for me. I was lucky enough in my life to have a Mother and a Best Friend for whom faith comes, and always has come, very naturally. So I let them carry that. I let them worry about that little faith heart that came unglued, and I let them worry about making sure that that piece of the puzzle was taken care of. Because I was already carrying everything else. I was holding everything else together and I needed help.

I remember when I came to this realization. It was scary at first. Not holding or trying for faith, and instead letting it go. Would I be judged for that? Would I be judged by others or even worse would I be judged by a higher power? And worse of all, would there be life altering repercussions for that? But that fear didn’t last long. Right wrong or indifferent it didn’t last long. Because I remember the most overwhelming feeling was how “right” and “ok” it felt to hand this important piece over to them.

Mother of children with childhood cancer don’t hand things over very well. We have a need to swoop in and give our children everything. But there I was … handing over this most important piece to two of the most important people in my life. And it felt so right. It lightened my load, and allowed me to be the person I needed to be with confidence and optimism, not someone who was constantly questioning if I had enough faith for me and for my family. It was the right decision for me and it felt real and true.

It would be my greatest hope that anyone who may be reading this and who is going through any kind of challenge in their life, that you give yourself permission to let go of something that is too big for you to carry. Give yourself permission to hand that over to someone else. Someone you love and who you trust. Someone who truly has your back and who loves you unconditionally. It will allow you to be the person you need to be on your journey. You can always pick it back up. You can always try to carry it at a later date.

I know that is hard. I got very lucky with my Mom and Best Friend. They picked up and carried that for me without ever consciously knowing it. They did it without judgement or conditions, and also without ever once trying to make me be someone I wasn’t. And that’s a tough thing to do when we are talking about faith.

I never really came out and told my Mom and Best Friend any of this. But their faith, and my confidence in it, was one of the greatest gifts I ever received. I whispered thank you for this gift so often, and still continue to be thankful for what they were able to do for me.

So somehow in my mind, when my son had cancer, I wasn’t transformed and I didn’t have some kind spiritual or religious epiphany. I know that’s difficult for some people to hear and even more difficult for some people to understand. But before diagnosis is pretty much the same place that I am now after diagnosis. On the flip side though I am not any more jaded, which I kind of think is a miracle honestly after seeing and experiencing the things I have on that floor of the hospital … but nor am I any closer to feeling like my faith or spirituality are any stronger than when we began.

So here I am … 20 plus years after I received those little tole painted hearts, and I still have that nic nac hanging around. And that third Faith heart still has not been glued back on. Instead I chose to let someone else hold it for a little while and care for it. Maybe someday I will nurture that small heart, but only if and when it feels right to me.

But I didn’t throw it away either … and I think that’s not so bad.

A Broken Christmas

It’s the end of November and I’m unpacking my Christmas totes, asking myself how another year could have come and gone so quickly.  Wasn’t I just doing this? I’m pretty sure I was.  No really. I was standing in this same spot just yesterday.  Sigh.  What is it with time as we get older?

As the kids and I unwrap decorations from crumpled newspaper, Megan comes across a set of white ceramic angels.  As she unwraps them she laughs and says “Oh Mom – the angels got broken again this year.”  I look at her and smile.  Sure enough, once again the girl angel’s wings are hanging on by a thread and the end of the boys’ has come completely off.  She sets them down with care and I remind her how long we have had them, smiling.

It’s then that I look around at our Christmas decorations and realize how many of these things have been broken over the years.

There’s the Rudolph Snow Globe.  Mark loved this snow globe so much when he was younger.  It’s musical and plays – obviously – Rudolph the Red Nosed Reindeer.  This was his favourite song, bar none when he was a little boy.  I remember when he was three I showed it to him for the first time.  He was enamoured by the falling snow and the song playing in the background.  He asked me if he could pick it up himself.  “Of course you can honey.  Just be careful.”

On the inside of two minutes it went crashing to the ground.  The glass shattered and water and fake snow were everywhere.  He cried and cried.  But I told him it didn’t matter. Rudolph still sang and was still intact. And we could watch the snow fall outside as it played.

I also unpack four ceramic letters that spell the word snow.  We have always put them in our hallway, and promptly each year our dog Ginger rushes to the door to greet a holiday guest, wags her very large tail, and knocks over one, or two, or on a good day even three of those letters.  And every year we glue them back together, and laugh at her enthusiasm.

And there’s the wine glass.  My best friend has always been one of my very favourite people to shop for. I adore seeking out a perfect gift for her.  Nine years ago when I moved away from her and came back to Nova Scotia I found this stunningly decorated Christmas wine glass. I bought one for her and one for me. I sent it to her with a note to open before Christmas, saying that I had bought the exact same one and we could think of each other doing Christmassy things while drinking out of the same glass and we wouldn’t seem so far away from each other.    Off went hers safely to be opened.  While mine fell off a kitchen window sill and broke its stem completely in half.  Sigh.  But I didn’t part with it – instead I put in a small glass container and use it as a candle holder.  It really is beautiful.

Then there’s the hand-painted mug we bought when the kids were born for Santa to drink his milk out of.  It matches a cookie plate.  I looked high and low for this set and adore it.  Sadly the mug got put in the dishwasher by a well meaning guest one year and now says “Mil or anta”.  We keep saying we are going to paint the other letters back on. It never happens.  But we laugh when we open it and put it in its place of honour in the kitchen none the less.

There’s also the broken red star on top of the green ceramic Christmas tree that sits in my living room. The one my Mom gave me 10 years ago, which is the same one I grew up with in my own home when I was younger. How I loved that tree when I was a kid. Putting the lights in it each year.  And how I love having it in my living room now with my own kids as they put lights in it – broken star and all.

And of course there’s the giraffe ornament that’s missing his legs because one of the kids little trees they keep in their room fell over; the Disney ornaments that came unglued; the eye that has fallen off a Christmas stuffed animal; and the VHS tape that went hurling down the stairs with our favourite Christmas movie on it.

And finally there’s those angels. Those white ceramic angels.  We’ve had those with us the longest.  Before the kids.  Even back before we got married, when we were living together.  They were the one thing that always followed us from back then. No matter where we moved – what house or three Provinces we were living in, those angels followed us around and made their appearance from dusty boxes each year.

I remember thinking they are “us”. Me and Craig.  They are leaning over getting ready to kiss each other. I remember when they were brand new and perfect and so white.  I remember when they got their first mark on them. It was black and wouldn’t come off. At first I was devastated but then I thought “they are like us … just a little worn”.

Then one of their wings broke, and I thought that’s okay. We are still together even though we don’t look like we used to.  And then another wing broke off.  And each year we would get the angels out and each year Craig would glue them back together.  And each year I would think how they resembled us more and more – a marriage of many years with its hard knocks and ups and downs.

How naive we were. Little did we know what hard knocks were back then.  The years went by and I remember one of those years Craig forgot to fix them. And although I could have done it myself I just didn’t have the energy to.  But then another year passed and back they got glued together.

I remember even one year her head fell off.  I’m laughing hysterically as I write this but it’s true. If you look at her closely you will see where her head was glued back on.  Honestly. This makes me belly laugh with such irony and somehow such joy!  We thought we knew what rough times were. We didn’t have a clue. But we do now. Do we ever.

I look at them now and once again they need repair. They need a little TLC and time and effort. But they always have.  And most of the time … not all of the time …. but most of the time, we make sure they are taken care of.  Maybe not like they should be – maybe not like if we took them to a repair shop – but in the best way we can, and could, during the times we were dealt.

So yes – it’s another year. And we will fix those angels up again and give them the care they need. Someday we may take the time to superglue them and put more care into what they look like and clean them up a bit more. But for now, we will to put them up on the shelf and be so thankful that they are still hanging out together, roughly in piece, to remind how far we have come.  To remind us of our perseverance, fortitude and love.

I am so thankful for all the parts of my broken Christmas.  Each one holds a strong memory and teaches the four of us that things don’t have to be perfect to be treasured.  I love that we don’t surround ourselves with pretty Christmas things that can’t be touched.  I love that we still put all of these broken things out, and in my less than perfect home they fit right in.  I think they are all my most prized Christmas possessions …  and I’ll stack my broken Christmas up against someone’s pristinely decorated perfect Christmas any day of the week.

Remembering (and Not Remembering) Nine Hours

It’s funny in life what we remember and what we don`t. Why does our mind hang on to some details but let’s go of others? Is it the importance of them, or in turn the insignificance of them? I really don’t know, because I forget things you would think would be extraordinarily important, but remember inconsequential tiny details like the tile on a bathroom floor.

All of us have moments or events that happen that are life changing. Ones that you can never go back from. That change your worldview. That transform who you are to the core. What do you remember about those events? What don’t you remember? How do our memories of those events shape who we are now and how we navigate the world in the future? Or are they just that … memories? I don’t have the answer to any of these questions. But I do know that as time marches on I am afraid of losing my voice … or forgetting who I was … who my family was … during moments in time that for better or worse are a part of me and that have made me who I am today.

Not very long ago I made a post called “That Time of Year Again”. In it I talked about the anniversary of a certain day and how much I tried to avoid remembering it, but memories are a tricky thing to avoid. So I decided instead to embrace them.

The following is a glimpse into the first nine hours into a part of my life you would think I would remember EVERYTHING about. It turns out the things I do remember surprised me – as did the things I don’t. Maybe that’s just me. Or maybe you have similar experiences when it comes to memories in your own life. Either way, it has been interesting to think about as I recollect a time that should be so clear to me.

I always remember it as Summer Solstice. Summer Solstice – the longest night of the year and the first official day of summer. I always thought what a great night to have a party. You know what I mean – one of those beginning of summer parties that everyone counts on coming to every year. Summer Solstice would be a great night for a party.

But these nine hours don’t really start on Summer Solstice – they start the night before.

My daughter Megan had a soccer game. She was five years old and I was convinced that soccer would be as good as sport as any for her to try. Megan thought that was just great … but she thought picking daisies on the field while the rest of her team actually ran after the ball was indeed much more fun. She still to this day would rather pick daisies than kick that black and white ball around the field!

Craig was working and I brought Megan to soccer practice with Mark in tow. Mark was 3 years old. 3 years, 2 months and 27 days old. It was a hot night and he fell asleep on my lap as I sat cross legged on the ground. Did I bring a chair? I think I did. I think I brought a chair but he fell asleep before I got up to get it. Him falling asleep on my lap will make so much more sense within 24 hours. But at the time it just seemed normal that my three year old was in the middle of still needing his naps.

I don’t remember anything else about the day – what we did earlier in the day or coming home. I don’t remember anything standing out until I got Mark ready for bed.

What DO I remember from that night? I remember the rash. I remember exactly where I was in his room. We were renting a house waiting for ours to be built so it didn’t really feel like ‘his’ room, but it was. I was kneeling down. The floors were hard. I remember that. I hated those floors. Laminate throughout the whole house laid right on cement I’m sure. I was kneeling and I took his shirt off over his head. I remember his back being covered in what looked to be a heat rash. I don’t remember anything else. I don’t remember tucking them in or putting them to bed. But I do remember going to the computer and getting on the internet. I remember something not sitting right with me.

I can still see the page that I found as clear today as I did all those years ago. I remember scrolling down and down until I found the description of his rash. It was the last one. It said go to the Emergency Room Immediately. I remember it was in all capital letters.

I remember walking him up the walk way to the clinic. I was holding his hand and he fell on the paved walkway. He cried. He was wearing sandals. Him falling seemed like a big deal to me. Why?

I remember waiting in the waiting room of the Berwick Clinic. I remember what chairs we were in. I don’t remember how long we waited or how many people were there or not. I remember the room we eventually went in but I do not remember how we got there. I remember the doctor and the little plastic rectangle he put over Marks rash. It looked like a lab slide. I know what he was doing now, but I didn’t at the time. Did I ask? I don’t remember.

I remember him having Mark lay down in the bed and …what? … feel his stomach. I know now he was checking the size of his liver which would have been severely enlarged. He told me none of this. I remember it was then I started to cry. He hadn’t said a word – but somehow I knew our lives would never ever be the same. They were not sobbing cries. Just big fat silent tears that streamed down my face. I remember him asking me why I was crying. I don’t remember exactly what I said, but I remember him confirming that I had reason to cry. Not with any sort of diagnosis – but I remember him confirming them. What did he say?

I remember walking with him to his little reception area and him calling Valley Regional Hospital and telling me we didn’t need and ambulance – but we needed to drive directly there. Where was Mark? Still in the room? Who was he with?

I know I called Craig then, but I don’t really remember doing so. I do clearly remember seeing him when he came though. I was waiting for him outside the room and I saw him at the end of the hall. I remember seeing him standing there. I will always remembering him turning to look at me. He seemed so far away down that hall. I don’t remember what I said to him or what he said to me.

I don’t remember the drive to the ER. At all. I assume Mark fell asleep. I know this – but I don’t remember this. I don’t remember my conversation with Craig. Not even a little. I remember it was dark. I remember Mom and Dad came down to be with Megan who was sleeping in her room that really wasn’t hers.

I don’t remember checking in. I don’t remember being rushed in. But I do remember exactly which bed we ended up in at the ER and I do remember getting bloodwork asap. Mark was asleep. He had never had bloodwork before and I remember the phlebotomist asking me if they should wake him up. This question amazed me. I think it was then that I thought – maybe he can sleep through his whole night, and everything will be fine.

I didn’t really know what the right answer was – so we left him sleep. It didn’t take me long to know that this was the wrong answer. Who wants to wake up in a strange place and find strange people sticking you with sharp objects? It seems so obvious now, doesn’t it? It seems so obvious as you read it … but by then I was somewhere above myself watching the whole scene take place.

The ER at Valley would be the last time I would allow myself to be that distant-floating-person-removed-from-the situation … watching myself from above as if I was in someone else’s nightmare. Soon she would be gone and I wouldn’t allow her or anyone else to treat this – our life – as a nightmare of any kind. But for now – there I was – floating above it all for briefest moments of time which somehow also seemed like eternity.

I remember the docs asking about family history and I remember calling Mom. I remember what the phone looked like and felt like in my hands. I do not remember what questions they wanted me to ask her or what questions I did. I remember there was a point my brother had been pale in high school. I remembered the school picture of him during that year as I hung up the phone.

I remember having to have diarrhea more than once. I remember exactly what the bathroom looked like. More than anything I remember thinking “What the hell is WRONG with me – Mothers aren’t supposed be to be in the bathroom while all hell is breaking loose with their child! What the HELL is wrong with me? Get me out of this bathroom!!!!” I remember thinking how happy I was that the bathroom was 2 feet from his bed. Of course I didn’t really understand that my body was in shock. Not shock like we throw the word around in the world … like oh – she was in shock to be in this situation … but real medical shock – where your body just starts to shut down. It didn’t ofcourse. Not completely.

I remember the paediatrician on-call arriving and sitting in front of me. He sat at the end of the bed in a chair. I remember him having bloodwork in his hand. I don’t remember looking at it at all. I’m sure I did. This fact surprises me so much that I don’t remember. Cancer moms analyze blood work like we have a degree in it. It fascinates me now that I don’t remember looking at it. I remember him saying the word leukemia but would not diagnose it. I don’t remember what I asked or what I said. I don’t remember where Craig was physically. To my left? I remember the Doctor giving me his card for when we returned for treatment.

I remember being told we were heading directly to the IWK and Mark would need a transfusion as soon as we arrived. I remember being told we would go in an ambulance and I remember Mark being out on the stretcher. He slept the whole time they transferred him. Again … maybe he can sleep through the whole thing …

He actually did sleep through the entire ambulance ride.

I went in the ambulance with him and Craig followed it in the truck. Or van I guess. Or something. I remember worrying about Craig driving by himself. Craig never thinks anything can go wrong. I remember thinking if he would be ok. I remember being worried about him.

The ambulance drive was surreal – ofcourse – but the whole night had been surreal. I had to sit either backwards or sideways in the ambulance and this made me so very motion sick. And I remember thinking – once again – “Get with the program lady!” Again – some of it was probably shock – but I do get motion sick in general. Either way – didn’t want to be thinking about motion sickness at the time.

I remember saying over and over again … please let him be ok – please don’t let it be cancer. I remember rooting for it to be haemophilia. I really had no idea even what that was – but knew it had to do with the blood just like leukemia, and well – to me it sounded better than cancer. So I remember sitting in the ambulance with an annoying ambulance attendant hoping for haemophilia.

And boy DO I remember the ambulance attendant who sat with me. He talked incessantly. Looking back I’m sure it was his job to do so … to help ensure I didn’t go into shock. But my god – shut up already. Do you not see what is happening to us … SHUT UP!!! Then I remember him saying that Mark was very sick. I remember hating him for this. For saying that. At the time I truly remember a visceral hate. It makes little sense I know. But I remember that. Since then Mark and I have been in dire enough circumstances to have to be taken via the ambulance two other times and I have great respect and admiration for all that EMTs are and what they do. But that night I’m embarrassed to say that I did not.

I don’t remember entering the IWK and I don’t remember getting to the room. I do remember the room was HUGE. Like an entire freakin ward huge. We had it all to ourselves. I do remember it was about 2 a.m. And I remember the transfusion. His first transfusion. His first of … countless. No – honestly countless. His first of so many that soon it becomes ‘normal’ for Mark and no one calls to find out how it went … as if someone else’s blood products aren’t being pushed through your son’s body. As if there are no risks and as if he wouldn’t die if he didn’t get them. Soon it will just be another day. But this wasn’t soon. It was now.

I don’t remember them getting a line into him and I don’t remember him crying when they did so. You would think I would remember that.

I remember Mark was asleep and so was Craig. I remember the nurse. Platelets were the transfusion he needed and platelets have to be “pushed” through a very large syringe. So you don’t just get hooked up to a pole and let a bag drip down into your arm. A nurse sits there and literally fills her syringe from a bag of platelets and pushes them into my sons arm. Very slowly. It’s a process. I remember there were 4 bags (I would learn this to be a common number of bags for Mark) I remember thinking “Oh – they’re yellowish color – not red.”

I remember he had a fever and they were very, very concerned about that. I was so confused. I remember thinking they don’t seem that concerned about the possible leukemia … but they are up in arms about this little fever. I remember asking about that. I don’t remember their answer. I think it must have been vague. Little did I know I would spend the next 5 years fearing fevers – living and dying by a thermometers reading and a little something called febrile neutropenia that could take my sons life.

And I remember the nurse. She was my first experience with a little thing called hope. But not in the way you may think. We talked and she told me a story of how a boy came in a while back with similar symptoms and it ended up he didn’t have anything too serious … that he just had to wear a helmet for awhile. A helmet. I know now ofcourse that wasn’t really hope. It was false hope (later I would call this something else). I knew that then too. I really did. But I clung to the Helmut Story. And I remember at 3 a.m., sitting in the one hospital that every parent dreads … and I was thankful for that nurse and for her story. It was what I remember thinking about as I tried to fall asleep on the night … that had become morning … where everything in our lives had changed forever and there was never any going back.