Tag Archives: journey

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.

15 Myths About Our Journey with Childhood Cancer

When my son was diagnosed with a high risk cancer, I learned so much about life and the twists and turns it can take.  I also learned that many of the things I thought were true, or would be true, were very simply not.  The following are fifteen assumptions I found to be false on our incredible journey.

Myth #1.  Life With Cancer Sucks.

Sometimes it did.  Of course it did.  But the majority of time it did not.  You have to remember, our cancer journey was over the course of five plus years.  And three and half of those were active chemotherapy.  There was no way I was accepting “a life that sucked” for three and half years let alone five to seven.  With or without cancer.  So no.  Life didn’t suck.  Life was full of wonderfully rich adjectives, and with a gratitude that was palpable.  And remember, everything is relative.  You better believe life is sucking more for the family who was diagnosed (or unable to be diagnosed) in a third world country; or a country without health coverage; or circumstances where the child has no support.  Life was still life.  It was ours.  And no one was going to tell us it sucked.

Myth #2.  Knowledge is Always Power.

When your child is first diagnosed with a life threatening disease you become like a blank slate thirsting for every piece of information you can garner about their diagnosis.  But then after a little while you step back and you start sifting through all of that. You ask yourself, what really matters?  Do I need to know everything about everything?  Do I need to know every possible thing that “could” happen, or is it better for me to have a strong foundation about what “is” happening?  And what sources do I trust?  Where am I getting my information from?  Sometimes knowledge isn’t always more power … it’s just more knowledge … and not always reliable knowledge at that.

Myth #3.  Tomorrow Will be Better.

Nope.  Tomorrow might be worse.  Tomorrow might be the day that never gets better.  I’m very much an optimist, but I was always planted firmly in reality as well.  There are no guarantees.  Tomorrow ‘may’ be better or it ‘may’ be the worst day of my life.  I guess it’s that little “will” I couldn’t get over.  There are no absolutes.  But there is today.

Myth #4.  You Have to Have Hope.

Again.  Nope.  I would rather have no hope than the illusion of hope.  I would rather have an educated true understanding of what we are facing than have a false hope.  Again, it’s that “have” to have.

Myth #5.  Blood is Thicker than Water.

I am so lucky to have some mighty thick blood in my family.  My Mom and Dad proved how to walk the talk during so much of this experience.  Which trust me is a difficult thing to do over the marathon that is childhood cancer.  Their support was immeasurable.  Aunts and relatives who came to the hospital and sent cards and gifts lifted my spirits so much, even though outwardly I may have looked exhausted. We were so blessed.   But make no mistake, I also learned the viscosity of water can, in a few particular amazing people, be just as thick or thicker than blood.  And I discovered that the whole ‘blood versus water’ thing mattered not.  Blood or water has little to do with the people who decide to step up, and in turn for the people who just don’t. It has little to do with blood.  And everything to do with the people who choose consciously to walk beside you in the world no matter what.

Myth #6.  Sharing in Others’ Experiences will Lighten Your Load.

This one reminds me a little bit of the child birthing experience where sometimes, in some cases, some mothers feel the need to share every horror story there is … in a very unsolicited way.   And boy, in the cancer world it really depends where your mind and heart are in your journey with whether you can take in all those stories of other children’s side effects and experiences.   Many times these side effects were rare, but significantly life changing.  I found it often burdened me down with worries that may never occur, rather than lighten anything for me.  So I became selective in what conversations I engaged in and with whom.  That sounds awful doesn’t it?  But I needed to take care of me, and my load was heavy enough.

Myth #7.  Numbers are Everything … when it Comes to Survival Rates and Prognosis.

False.  False.  False!  FALSE!  This a myth I debunked early on.  I had to, as Mark was diagnosed in the high risk category of cancers.  I found I had to, in order to live the life I needed to for the kids, for our family, and for myself.  The reality is … our experience is … you can beat the odds.  And getting weighed down in survival rats and prognosis when the numbers are firmly against you achieves nothing, and can significantly harm the time you have – which we all know is only ever “now”.

Myth #8.  Numbers Mean Nothing … when it Comes to Blood Work.

I know I just said numbers being everything is false.  But when framing it in the context of bloodwork, they ARE in fact everything.  I lived and died by those CBCs.  They told me so much.  How he was doing, what tomorrow may look like, whether we could hope for a jaunt to the playroom, a walk in the park, or the brass ring of going home.  And when we did get home those numbers mattered because they affected our daily life, and therefore what memories and moments we were able to experience.  Would the day entail an afternoon transfusion of platelets, or instead a trip to Hennigars?  We made our fun no matter which it was … but those Hennigar days were precious, and the numbers helped us get there.

Myth #9.  Crisis Brings Out the Best in People.

It doesn’t always.  And you have to learn what to do with that at every turn and at every experience. There will be the people who don’t come to the hospital because it’s too difficult for them.  For them. For THEM.  Sigh. There were others who just seemingly dropped off the face of the earth because they didn’t know what to say.  I had to learn to forgive all these people, to see things from their point of view, or to let them go from my life. I have chosen all three at times.

Myth #10.  Facts are Clear Absolutes.

There are very few absolutes in the childhood cancer world.  Facts must be communicated and they must then be received.  This must happen in an environment that is both unequal and unfathomable, to both the oncologist and the family.  The frame with which this is done, which health professional is telling you, and where you are as the parent emotionally, all significantly affects how you interpret a so called fact.  Trust me.

Myth #11.  It’s All Part of a Larger Plan.

Ummm … Hi.  There is no plan.  There is a big difference between believing in a larger plan and a higher power.  And if by some small measure of truth there is a larger plan, trust me, you don’t want to hear about it.  The ending isn’t always good. Even for children.   So no.   My plan didn’t focus on anything larger. It focused on getting through the day, whispering thank you for the day, being present in the day, making the day incredible.  For Mark.  For Megan.  For me.  For us.  It was about the day.  It was about the here and now.  It was no larger than that.  And it didn’t need to be.  At least not for us.

Myth #12.  The World Stops.

Guess what.  It doesn’t.  I remember my first time leaving the hospital after diagnosis.  I had no understanding how everyone could just be living their life.  It was then I learned you think it stops; but it doesn’t.  And sure, it may stop for you.  For a few moments.  But even then it keeps on turning pretty damn soon after those words are uttered.  Because those bills keep coming, the animals still need to be fed, and work eventually needs someone back all too soon.

Myth #13.  It Takes a Village.

Sure a village is nice, but I found not required.  I didn’t really have a village.  I had just moved, and at that was in between homes.  As in physical houses.  The village I had nurtured was hundreds of miles away in a different Province.  The majority of this journey we did on our own.  There were no freezers full of casseroles or no neighbours popping by.  There were no friends offering to help with Megan.  We knew no neighbours and we had no friends here yet.  And that’s not a ‘woe is me’ thing. That was just the way it was.  We literally were in the middle of a move to a brand new place.   So yes.  A village would have been nice.  I know it would be different now having established relationships here.  But we still managed pretty ok without it.

Myth #14.  Home is Where the Heart Is.

I’m afraid sometimes home is home, and it has nothing to do with the heart.  Sometimes it’s brick and mortar and your very own bed.  I know there were many nights in the hospital I felt this way as I lay on a cot next to his bed.  And I know I felt this the night that Mark lost his first tufts of hair as we were  lying on a mattress on the dining room floor of my parents house.  We were waiting for our new home to be built and while we were in the hospital had to move out of our rental that was our temporary home.  On that night when I saw his hair on the pillow as he lay beside me, home wasn’t where the heart was.  That night I wanted nothing more than to be in my own bed in my own home …not some transient, homeless gypsy, sleeping on the floor waiting for drywall to be erected in Avonport.

Myth #15.  The Oncology Floor at a Children’s Hospital is a Horrible Place To Be.

People have this pre conceived notion of what an oncology wing at a children’s hospital is.  I know I did.  They have visions of bald little children with tubes coming out of them, being poked and prodded, waiting to die. I guess parts of that sentence are true.  But the reality of the floor is so very far from that notion.   We laughed and played and lived a lot of life there.  We met our strongest allies and our fiercest champions.   We built relationships second to none.  We saw the definition of resilience.  You see, it couldn’t possibly be a horrible place to be, because lives are being lived so fully there each and every day.  They are being valued and treasured.  And they are being appreciated … at least I know they were by one family … because after all, it was there where I first started whispering thank you.

Anticipation, Preparation and the Journey

I love to travel. This is by no means a staggering admission to anyone who has ever met me, nor is it surprising as we slowly accumulate a small library of places we have been as a family over the years. And while nothing can compare to the new moments and experiences that immersing ourselves in a new place can bring, I almost equally enjoy all of the preparation that goes into the planning of these excursions.

We are sometimes different in the fact that we never choose an all inclusive option for travel and never go through a travel agent, so planning our vacations can be a full time job, which I know can seem daunting and overwhelming to some. But I must say, it’s this part of journey that I really do relish. I think the real joy in life is appreciating every moment of it, even the commonplace ordinary things like preparation. So while I hope an upcoming 19 days on the road will be amazing, the 60 days prior to that have been pretty damn amazing themselves as we dream of what is to come. It’s like that saying “Life isn’t about the destination but the journey that gets us there”.

And when I say I love everything about preparing to travel, I do mean everything. The anticipation is always palpable in my house as we talk about the places we will see and the things we will do. We make our endless lists. They begin with the big picture things. Where will we go this year, how will we narrow it down, how long will we plan to be gone, what are the new experiences we can have there (because if we can’t come home with new life experiences, it’s not a place worth going for us). Then we wittle our way down to the specifics and the logistics. What needs to be packed, hotels we have booked, tickets we have purchased, and all the freebies we have found to do there (this is one of my favourite parts). Lists after lists accumulate. And they are no longer made just by me, my children are very well showing up their mother now with their organizational travel and planning skills. Lists on electronic devices, on loose leaf , on post its. They are everywhere.

And I love the really small things too. The seemingly mundane things about getting ready to go on a trip. I love picking out the right books and magazines to read. I do. I love this. Not too thick. There won’t be time to read all of that. Certainly not hardcover. Too heavy. Sigh …. I guess that Jim Henson biography I’m in the middle of will have to stay home. So it’s down to the basement I go. I take a look at bookshelves to see what’s there. It never disappoints. I pick up an Anne Tyler called “Back When We Were Grown Ups” that I bought at Value Village, many a moon ago. Who can resist that title? It’s perfect. Into my carry on it goes.

It’s become ritualistic really … this packing and preparing and anticipating travel. Pouring liquids into tiny bottles, gathering all the chargers, creating folders full of our tickets and plans, the kids getting their backpacks ready, filling them with all the important things they have come to rely on when on the road. I see their passion for it, I see them owning it, these little pieces that are all a part of the experience.

There’s even anticipation as we go to the grocery store and pick out the snacks we will take on the plane. It sounds so silly doesn’t it? But it’s these things that are all part of it for us. Which flavour sucker do they want so their ears will pop easier on the plane? What snacks won’t melt in their bags and have some good protein? Heaven knows we aren’t buying a meal on the plane. We may travel a lot, but we do it cheaply and on our terms, saving our money for experiences and not things.

My kids have come to count on these traditions. They have come to appreciate them. These small rituals. And so have I. I love that. It extends the joy. It makes us appreciate the small things. And all this work we put into it makes it so much sweeter on the other end.

Our dining room table is full of these lists and items to pack at the last minute. The two weeks before a trip we can never eat in there and are always relegated to the kitchen for suppers. The dining room has always been trip central, and stays that way until the day we leave.

And boy do I love the feel as the day of departure gets closer. It does have a feel. It’s indescribable but it’s there. And the morning we leave … because we always seem to leave in the dark of the morning (can’t be burning daylight, right Dad?) … the morning we leave almost feels sacred. As the four of us embark on new adventure. The excitement in my kids eyes is irreplaceable.

We have been fortunate enough to have taken 13 family trips together. Each one has a different feel … but they all have one thing in common … joy and anticipation.

Some would add up the money we have spent over the years and think what a waste that was … how we have nothing to “show” for it. But I would argue that the most important things in life can never be seen … you can never “show” the most important things. And when I die, I will never look back saying boy I wish I had bought that “xyz” instead of the truly countless adventures we have had as a family together on our travels.

Soon we will be on the road again. And I can’t wait. I wouldn’t trade it for the world. But I also wouldn’t trade the months leading up to it and all the work that has gone into it. Some may see a dining room full of suitcases and a table full of papers and research. I don’t. It’s all part of the journey … all part of the joy … all part of who we are as a family and one of many common bonds that holds us together.

It’s something I whisper thank you for all the time.