Tag Archives: Cancer

It’s Not Who Stands by you in the Worst of Times

There is a very common saying in the world that goes something like “You know who your real friends are by who stands by you in the worst of times”.

While I understand where that sentiment is coming from, I have to say that I have never found it has been true for me. Atleast maybe not in the way I perceive it.

Like all of us, my family and I have seen some pretty crappy times over the course of our lives. And we have also seen some pretty euphoric times as well. Both of these ends of the spectrum are just that really.

Ends of a spectrum.

And here’s the thing. For me, the breadth and depth of that spectrum ~ the length of it ~ that middle ~ well that’s in truth where most of my life is lived.

It’s there where the every-day lies.

It’s there where the mundane and boring and middle ground is found.

It’s there in the middle where we go to school and work and participate in clubs and sports and projects and meetings and conferences.

Its there in the middle where we get up every Monday and put the week on repeat until Friday.

It’s there where we make the majority of our decisions, and there where we choose what action we will or will not take in life on a daily basis.

It’s there where my family honestly lives a good 75% of our lives.

This middle is by no means horrible or sad or negative.

But neither is it necessarily exciting, unique and joyous.

It is just … well … everyday life.

It’s the sitting on the porch drinking coffee, reading a book, playing video games, texting, walking around campus, talking with friends, biking, hiking, hanging in the school cafeteria, endless work meetings, sharing small parts of every day life.

It’s the middle.

It’s the somewhat mundane.

And I believe it’s here where we find out who our friends are.

Not in the worst of times.

My experience during the worst of times has been that I sometimes am literally surrounded by people ~ both friends and strangers ~ and people maybe wanting to be my friend.

When tragedy strikes or bad news arrives, it’s been my experience that people want to come together and help.

It’s a wonderful and overwhelming feeling.

It is most often genuine and selfless and a true testament to the greatness life has to offer.

And I have been so thankful for it.

But if I’m being honest, and I know this isn’t the part I’m supposed to say out loud, it also can provide people with a sense of being on the inside of something greater. There is a strong and wonderful pull in human nature to be a part of something. This, as with all things, can be beautiful or it can be challenging.

When bad news arrives, we can sometimes find our lives surrounded by so many people who want to help.

I’m thankful for each of them.

But in that sea of people, during the worst of times, I am very aware, and I try to make my children aware, that there in that moment is honestly not where you “find out who your friends are”.

Maybe it’s where you find out what beautiful large hearts people have. But if you are speaking of the true definition of friendship ~ where there is a different level of being valued by someone ~ maybe it’s not there you find your actual friends.

Instead you find your actual friends in the middle. In the mundane. You find them not in the highs of the best or the lows of the worst.

Your friends are the people who are consistent and present in your life. They are the people who have put in the time ~ and especially the balance ~ during that entire middle part of the spectrum.

You find them in the people who still want to be with you during that “middle” period of life.

For when tragedy strikes, I don’t turn to the person who suddenly shows up.

I turn to the people who have always been there. Slugging it out with me in life. Making me a priority even when it’s just a boring old Wednesday.

It’s these people I have built a true relationship with. It’s these people who I have built up trust and history and confidence with. It’s these people who have reached out to me, and I to them, during plain old regular days.

They have been by my side even if I’m not trendy.

They have reached out to me for no reason at all except to say “Hey. How are you on this every-day-nothing-special-day? I’m thinking of you. Just because. Wanna get together?”

It’s this balance and effort during those times ~ the middle times ~ the boring times ~ that does, has, and I know will continue to, sustain me during the worst ones.

I try hard to remember, and I try so very very hard to teach my kids, that no, maybe you don’t find out who your friends are during the worst of times.

Maybe in fact and instead, you actually find out who your real friends are during the boring, every-day mundane times.

Look around you then.

Look around you during “the middle”.

Those are your people.

I know for sure they’re mine.

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.

I Do Know

I do know.

I do know I’m abnormally attached to your boys.

No really. I am.

I very much see this for what it is and feel a little sorry for your kiddos who have to endure yet another adult who is so invested in their presence on this earth. Particularly during a time of teenage hood where they would be happy if a giant hole swallowed everyone over the age of 30.

But there I am – always in the wings.

I cheer just a little bit louder when “they” have their time in the spotlight either on the court or walking across a stage accepting achievements.

I tease ‘them’ just a little bit more than their counterparts.

I wave a little bigger and my heart melts a little bit more when I see ‘them’.

I do know my love for them is one that is usually reserved for family members.

I do know I’m a little too thankful for them.

I do know I’m a little too invested in their lives. That I ask about them a little too often.

I do know that when Mark is having groups of friends over I always hope to hear their name in the list of attendees (which is pretty much always true).

And I do know sometimes I even expect a little too much of them – as I do from people I truly care about. I do know the unfairness of that to them – and to you.

And I do know they aren’t my children.

I do know all of these things.

But what YOU don’t know is this:

There was a time in my life I didn’t know my son would have these friendships. At all. With anyone. I didn’t know that he would be blessed enough to have these relationships. That he would know the camaraderie of being one of the gang. Something that has now come to mean everything to him.

And here’s the other thing:

I bet you always took for granted that your children would form these bonds. Maybe you didn’t know who they would be with, or when they would happen – but I bet in life you pictured they would have close friends who would have their back.

There was a time I didn’t.

There was a time I didn’t believe he would have the privilege of fist bumps and shared laughter. I didn’t believe he would be on a court working with others. I didn’t believe he would have that feeling that comes from close knit friends.

So yes. I do know I care a little too much. I even know I care much too much.

But this was a future I never knew he would have, and so the hard truth for you and your boys is this: I don’t know how to be any other way.

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.

Celebrities on Planes

When your husband texts you from the plane saying YOU’LL NEVER BELIEVE WHO I GOT TO SIT NEXT TO ON THE PLANE!!!!

But you haven’t received the photo yet.

So you sit and wait and think. OH MY GOD – WHO IS IT GOING TO BE? What famous person is travelling from Halifax to Toronto on January 26th that Craig knows I would be incredibly excited about?? Jim Cuddy? Drake? Meghan Markle? Prince HARRY!! (Because of course he flies commercial coach) OMG OMG could it be Bon Jovi??? It HAS to be someone INCREDIBLE AND IMPORTANT AND AMAZING for my easy going husband to be so excited and text me about it.

And finally the picture comes in.

And sitting there – with two huge goofy selfie grins on their faces – is my husband and my sons Oncologist.

And I start to laugh and cry at the same time … and I can’t stop doing either.

Because I couldn’t have been more right – about the incredible, important and amazing person part.

Period.

Unsigned Cards

In my bedroom, tucked up under the mirror of my dresser, you will find faded greeting cards. Perhaps a little sentimental but not particularly unusual. I bet there are millions of people around the world tucking cards that mean something to them up on their mirror. Cards that someone gave them. From loved ones.

It’s only when you take mine down and open mine up that you see where the anomaly comes into play. Because when you do, you would find no handwriting, no messages from friends or family, no signatures scrawled across the bottom. Just unsigned cards that look like they could still be sitting on a store shelf – except for the faded colours and curling corners.

Many years ago when Mark was sick, I found it hard to leave his bedside. But every once in awhile I would venture out for short periods. And during that time, all too often I found myself in the most unlikely of places.

A card store.

In I would stroll in a fog-like state. Slowly, with seemingly an unclear purpose. Up and down the aisles I went. Not knowing exactly what I was doing there, but knowing I was looking for something. Some kind of wisdom maybe. Something that may be in the thousands of words and sentences and carefully constructed paragraphs of these folded cards. 

And soon I realized.

Sometimes I was looking for strength, because so often I had given all of mine away. To him. To her. To Craig. To everyone.

Sometimes I was looking for something to speak to me. For inspiration. For light.

Sometimes I was looking to feel less alone. For a sign that, in fact, I wasn’t the only one in the whole world who had ever felt this way, on this day, in this place.

Sometimes I looked for levity. Something that made me laugh. That made me forget. That made me smile.

And sometimes I was even looking for hope. Maybe hope was hiding here amoung the ink and cardstock and envelopes. After all, it had to be somewhere didn’t it? 

Up and down the aisles of the store I would walk. Reading card after card. Opening each of them, not knowing what I would find inside. Crouching down to the bottom racks so I wouldn’t miss “it” if it was there. Whatever “it” was that week.

And then next week I would go looking again. But for something different, because by then my heart and mind would be in a different place and would need something new.

I gravitated there time and time again. These generic commercial card stores in generic commercial malls.

And more often than not I would in fact leave with a card in hand that the cashier would tuck inside a small flat paper bag. A card that never got addressed or mailed or even written in.  

Because it was for me. From me.

Yes. There I was – buying cards for myself.

How crazy is that?!  

I never told anyone this before. Mostly for fear that it sounds a little “one flew over the cuckoos nest”.  

But I guess we all find comfort and strength in sometimes the most unlikely places. Even a card store. 

Our journey with childhood cancer was a roller coaster. How could I ever expect anyone else to know how I was feeling all of the time? To know exactly what I needed and when? Why wouldn’t I go looking for it myself sometimes? On my own. 

And if buying cards for myself sounds odd … well … somehow at the time, leaving that little folded piece of paper behind in the store – something that could sit at my hospital bedside giving me strength – well somehow the act of leaving it there in the store would have seemed craziest of all.

Someone Else

You were always my “Someone Else”.

Even though we never stayed in touch.

But we didn’t need to did we? We recognized ourselves in each other and didn’t need the expectations to be anything we weren’t or couldn’t be.

I creeped you on Facebook today. For the first time. Ever.

Ten years later.

That’s hard to believe isn’t it?

A part of me was scared of what I would find.

Or more accurately what I wouldn’t find.

But there she was. A head full of hair. A beautiful, growing teenager – with a smile to rival any.

Standing with awards and proud parents. 

My heart exploded!

I just went through old photos and there she is in so many. There you are.

Both of you nearly bald.

How has it been ten years?

Ten years since we met. Since I gave you that Pink Fuzzy Bird. Just like mine. 

Since we made each other go outside and breathe fresh air. Since we made each other leave their sides – for just an hour while they slept.

I remember when we finally left. Six weeks later. For good. We got to leave before you. A part of me ached for you even though I so much wanted to go. 

And then a part of me wanted to stay. Safe. Secure. Up on 6. The opposite of what most feel about that number. That floor.

I remember soon after I left – your letter to me. Her heart stopped from one of the drugs. I wasn’t there. How could of that happened when I wasn’t there? When I wasn’t there for you?

I remember when we came back with the liver disease. For a month. And then it was you who wasn’t there. My turn to feel the loneliness. My turn to walk in the darkness for real this time.

There are stories of people and friendships that were forged during these times – who still stay in touch and have become each other’s comrades for life. Side by side. Best friends in each others lives.

That isn’t our story. That isn’t what everyone always needs. We needed all the strength we could muster to be what we needed to be for them. There was little left to give.

How can a time with someone that was so fleeting be so significant?

I love that we never tried to be any more or any less than what we were to each other.

We didn’t need to be.

You were perfect. 

We were perfect. 

Exactly what I needed. At the time when I needed you most.

Still.

Always.

My Someone Else.

Oh.

I know I’m supposed to be listening harder.

I know I am supposed to be concentrating more.

Look at her.

It will help if you look at her.

Concentrate.

I think this is important.

But my eyes wander. 

Just a little. Not too much. 

I wouldn’t want to appear like anything but a mother who is paying 120% attention.  

Because that’s what I’m supposed to be doing. That is who I’m supposed to be.

There are a lot of cupboards in this room.

They are grey.

Up high and down low.

Cupboards full of information I guess.

Information for me?

Ok. Look at her again.

Concentrate.

She is trying to help you.

Wait.

There are labels on these cupboards.

They are made from a label maker.

I had one of those when I was 12.

Mine was blue. I loved that thing. I put labels on nearly everything I owned.

Crisp white stick-on strips with black neat capital lettering.

Wait.

Why does it say Palliative Care?

Where am I?

Hold on.

Something is wrong.

These cupboards are mislabeled.

I’m in a Children’s Hospital.

These are mislabeled.

It’s the Children’s Hospital.

I am in the Children’s Hospital.

He is in the Children’s Hospital.

There has been a mistake. 

A mis-label. 

Oh.

Wait.

Oh.

I want to glance at it again. Maybe I misread.

But I have to concentrate on her and what she is saying.

And of course I know. 

I know I didn’t make a mistake.

Not then.

Not now.

I still see it.

So many years later.

The label-maker label. 

White Strip. Black letters.

Oh.

September Can Be Hard on My Heart … and on my Conscience

It’s October 1st and as I flipped the calendar over this morning I have to be completely honest, there is a small part of me that breathed just a little easier. 

I’m not supposed to say that. I’m not. Telling the truth – my truth – is hard sometimes. And this particular truth comes with a lot of guilt this year.

I am privileged to be a part of so many wonderful communities. Communities of sport moms and neighbours and family and school and colleagues and friends. 

I also happen to be a part of this other extraordinary community. It’s a group of women whom I adore, look up to, and identify with. They are strong beyond measure and I admire them for so many things. But more than anything else I admire them for walking the talk. 

They are mothers of both angels and of childhood cancer survivors. And this post is such a hard thing for me to admit because I take my part – my role – in that community so seriously and hold it very close to my heart.

September was Childhood Cancer Awareness Month. It is a month when we in this community come together and speak with one voice. Some of us whisper, some shout, some are eloquent, some sorrowful, some raw, and some full of grace. But all of us tell our truth. Because it’s the month we step up.

But this year I didn’t step up. This year I had to step back.

By being part of this community, I have seen things that people from my other communities haven’t seen. That I still see. I have conversations they don’t have and I read stories they don’t read. 

“When Cancer is the Side effect of Cancer”. “The Chronic Illnesses of long Term Cancer Survivors”. “Childhood Cancer Survivors Face Lifelong Challenges”. 

All of these stories, conversation, articles and images culminate for me in September.

They fill my newsfeed, my twitter feed, my messenger, my newspapers, my magazines and my emails.  

They also fill my heart, my mind, and particularly this year, they fill that place of worry that never goes away.

These images of children no longer physically with us, of children relapsing, of children in treatment. Articles that echo the things we are living with and/or worry about everyday but rarely talk about. These things are all part of my world that usually I actively participate in. But they can, every once in awhile, be too heavy and I have to take a step back.  

And the guilt of that decision is difficult for me to accept. But I am trying hard to put it into perspective, because when I take a moment to pause, I realize I have done much for our cause over the years. I have done much for this community.

I have raised awareness and funds, each year trying to do something to give back. I have raised tens of thousands of dollars shaving my head, raised thousands for Children’s Wish in Exile Island, collected band aids and room stick ups for the hospitals, visited patients, doctors and nurses on Christmas day with gifts in tow, participated in the Mollie Appeal and Young and Fearless, gathered groups to donate blood, Relayed for Life, started a blog, Campaigned for Hospital Foundations, volunteered on Ethics Committees, been featured for Radiothons and lent our story to countless organizations for awareness.

I take my role in giving back very seriously, and I’m so proud of the things I have accomplished for this community.

But although I am proud of these accomplishments, it doesn’t ease the guilt that comes with taking that step back for the year, or making a conscious choice not to do as much as I have done in the past. I’m a big believer that actions are what matter in life, and our thoughts alone do little to enact any change in this world. 

However – and this is a big however – I’m also learning that being a part of a community means you are not alone.  

And that every once in awhile, if every few years or so, I need a break from ‘September’, I have to say to myself, that’s ok. It’s ok because I am doing what needs to be done to take care of ‘me’, to refuel and recharge in a world where I still have to deal with so much others don’t see. And it’s ok because I know that as I step back, others will step up. Fighting and shouting and whispering our cause. And when they are tired and they feel heavy, then that will be the year that I step up again, when I feel stronger and more able to be public once more about our journey.

I am so thankful for this community … for these Mothers. Because I know they understand my guilt, my worries, my needs, my fears, and my gratitude. And although I worry about letting them down, I know they would be the first ones to tell me to take the time I need, to not be ridiculous, and that they look forward to me standing beside them again soon. 

So for now, for this past month of September, I gave myself the permission not to step up in the ways I have in the past, but instead to applaud ‘those who can’ this time around. I attended the events ‘they’ organized, gave to the funds ‘they’ raised and were grateful for the awareness ‘they’ were able to bring.

And that’s what I did. I applauded. I showed up. I donated. Because even when we can’t do it all … we still need to do what we can. 

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.