Category Archives: Challenges

There’s a Big Difference


Dear Megan and Mark,

I love YOU so I will always happily do things for you.

But please know … I don’t always LOVE doing things for you.

Read it again. There’s a big difference.



Love, 
Mom



Last week I was driving Mark and Megan to school. Later that day they had soccer practice, piano lessons times two, a party, and a dentist appointment thrown in for good measure.

In the front seat I was going over the seemingly complicated agenda of the day. Who was picking up who from where, at what time and what they needed to have ready.

It was one of those days where there were four activities, only two of them and small windows to transition between each.

There are days when I feel overwhelmed by this, and days I feel energized and grateful. I’m lucky that most times it is the latter. I’m extremely conscious of how blessed we are to be doing all of this and how each and every activity is a choice made by us. No one forced these on us. It is what we want to do and what we choose to do. 

And although of course there are days accompanied with a big sigh and rolled eyes, because I’m human, this day wasn’t one of them.

So as we were going through the logistics of the day, Mark says to me, “And Mom you get a chance to read your book.”

Wait a minute. Excuse me. What?????? WHAT??!!!!??

Because it’s the way he says it. It is just so non-chalant.

He wasn’t being sarcastic or rude. He GENUINELY thought this was something I would love to do. 

Some “me” time. 

A little “gift” I would be receiving in the middle of the day.

A chance to read a chapter from my book while sitting in the drivers seat on a rainy day cramped behind the steering wheel waiting for him before rushing to the next thing.

It was a HUGE wake up moment for me.

And it dawned on me. He really and truly thought that I was having a blissful time as I waited in that car for him.  

Oh boy. Maybe I’m doing a little too good of job being positive in life. 

Because kid, let me tell you, given the choice, you will ALWAYS come first in my life. I love you. BUT don’t kid yourself that sitting in this car, or driving you places, or having to be somewhere at a certain time, or sitting through a band concert of newbie tuba players, is where I find my deep personal joy. I can list 82 places I do find that joy – but these aren’t any of them.

Watching you play a soccer game, or listening to you at a recital, or watching you in a theatre performance. THESE things all bring me IMMENSE joy. But all the thousand things in between that – to enable those moments to happen – well, just be aware that there in fact is a difference.

So while I love you and am happy to do things for you BECAUSE of that love – I am also a vibrant, passionate, multifaceted human being who has numerous things I’d rather be doing if you weren’t involved in this little scenario this rainy Monday evening.

So as long as we have that straight – which bears repeating:

I love YOU so I will always happily do things for you. 

But please know … I don’t always LOVE doing things for you.

As long as we are clear on that, and the difference that lies there, onward we go. 
We have a lot to do and a short time to do it. Because you are loved. So very much. 

Let’s hit the road. 

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.

Raised Up the Roof

I adore the band Blue Rodeo. They represent everything I love about music. They are real; they write about things that matter to me; and they have true chops. When you go see them live they sound exactly like they do in your living room on that CD you’ve played over and over. Needless to say I have been listening to them for decades. 

One of their songs, “It Could Happen to You” starts off with six lines, that from the moment I heard them, spoke to my heart. It was like they wrote those six lines about my parents, and about the house they consciously chose to make into their home. (And by process of a little DNA and a whole lot of love, my home as well).

This past February, without warning, that house, that home, was traumatically taken from them in a fire that engulfed nearly every corner of its two thousand square feet. Nothing was salvageable.

But my parents are very clear about what is important in life. They are beyond grateful that no one was hurt, and that no one was even home when the blaze began.

They understand how lucky they were and they feel very blessed to be unharmed and here on this earth with their family and friends.

At the same time however, in amongst the “You’re so lucky”s; “Thank God”s; and the “It could have been so much worse”s; there is still enormous loss and unspoken grief. A loss I think few of us, certainly perhaps almost none of us from my generation, and few from even their generation, can truly understand. 

Today in 2016, we buy a house or hire someone to build one. We certainly do none of the manual labour ourselves and there are dozens of people behind the scenes who make the purchase, or the build, all easily come together so we can walk in to a pre existing house – and boom – call it a home. Although there is an argument to be made that we work hard for the money that buys that house, we do precious little physical work.

Those of us who do put some sweat into our abode, usually do so in an aesthetic, supplemental way. Finishing a basement here, building a closet there, laying down our own flooring, or slopping a coat of paint or two on the walls. Doing “small renovations” ourselves sometimes, but really in the grand scheme of things, not much actual physical work ever goes into the house we call home.

Instead we hand over some money, and purchase a nice little pre-packaged, matchy-matchy house that does a pretty good job of keeping up with some family called the Jones’.

Not my parents. They did nothing BUT physical work. And make no mistake they didn’t ‘renovate’ a house. They ‘rebuilt’ a house. They ‘created’ a home.

When my parents moved to Nicholsville in 1972 they were far from wealthy. Heck, they were even far from middle class. But then when I think about it, everyone was “far from” I guess … so maybe the lines of “class” we’re blurrier back then. Or maybe just no one cared. 

So forty-three years ago they scraped together enough money to purchase an old farm house on Harmony Road. When I say old, I mean old. Not heritage, not well-maintained, not just a-little-dusty. Old. Although structurally sound, it was, for all intensive purposes, abandoned, and hadn’t been cared for in a very very long time.  

My mother’s family questioned her sanity but she would hear nothing of it. My parents had a vision. No money. Few resources. But they had a dream.

They lived in one room at a time working every second they had free to make the rest of the house liveable. In the walls that they tore down they found wooden knitting needles and butter prints. In old attics they found spinning wheels and wooden washboards. They uncovered fireplaces and bake ovens. They levelled, straightened, sawed, cut, hammered, tore down and built up.

They converted old kitchens into woodsheds. They moved doors and windows. Mom would literally pound nails out of old boards, so Dad could re-use those same nails in other parts of the house. They painted. The sewed curtains. They put in wood. They shingled. They poured cement. All by themselves. They worked side by side. Day and night. And when my brother and I came along they just kept working. 

There are endless stories of what they did to the house. What they did to make it liveable. What they did to make it a home. Every story they used to tell me was told with a pride that I now see comes from working hard – for yourself and for your family. For your dream.

And that dream came true for them – because they made it come true.

So when we (including me) try to put things in perspective after the fire, and think well-meaning things, like “it was just a house” … I don’t know if we can truly understand the enormity of what went into that house to make it a home. How they reclaimed it. I don’t know if we can put ourselves in their shoes, because they literally brought four walls back to life. And the fact is – no one does that anymore. No one really has to. The concept is somewhat foreign to us.  

But I do know – if I had to work for something that hard – if I put that much blood, sweat, tears and love into something – it would ‘matter’. Those four walls certainly wouldn’t be “everything”. But they would matter.

And while I do know in my head it was “just a house” – I think only my Mom and Dad may really know the truth – that maybe ‘that house’ was just a little bit more.

——

Here are the first six lines of that Blue Rodeo Song. To me, every single word always felt like it was written for them.

“They broke off the locks and they opened the doors. Pushed out the windows and painted the floors. Grew a little garden outside in the western sand.

Raised up the roof till it touched the sky. Picked up the pieces that were left to die. Brought this building back with healing hands.”

Hmmmmmmm …

Wow.

Raised up the Roof ‘Til it Touched the Sky.  

Yup. 

They sure as hell did.

Beyond Safety. Some Not-So-Random-Thoughts for my Daughter on Social Media.

I’m so proud of you, kid. I see you managing all of this social media and digital world better than I ever could have at your age. Better than I do sometimes at my age! Keep it up. You are doing great! 

But because you got stuck sharing my DNA, I wanted to share a few not-so-random thoughts with you on the subject. Thoughts that go beyond the long safety-orientated talks you have suffered through the past years.

I know, I know. Just bear with me for five minutes. Here goes.

You are growing up in a world where you are being taught that ‘sharing everything’ makes your experiences better. It doesn’t. At least not how ‘sharing’ is now defined. What makes things better is being present in the moment. Not always sharing ‘each and every’ moment.

Having a connection with people has nothing to do with being connected. I know we have heard that many times before, but I don’t think we as a society are listening. I don’t think we are walking the talk. So I think it warrants saying again. The greatest connections you will find are when you are unplugged. Don’t let people convince you otherwise. I think this may be the hardest thing for your generation to realize. It’s even hard for my generation as we look around and we all have phones stuck to our hands. And when we do realize it … the difference between connecting and being connected … it is even harder to put that phone down and put that knowledge into action. 

Hiding behind a screen is easy. It’s easy in the middle of school when your friends haven’t arrived at your table yet and you are alone for those two minutes that can seem like two hours. It’s easy when you are in a place where you are uncomfortable. It’s easy when you are bored. And it’s ok to hide sometimes. It’s ok to use your screen to seem busy sometimes or to get through that awkward moment. It’s ok. SOME TIMES. But make those times few and far between kid. Choose those times. Choose them infrequently. Have the confidence in yourself to be alone sometimes. Learn to be alone. You happen to be great company!

The number of likes you have has nothing to do with your worth. That goes for when you have a lot or a little. The ego can be just as funny a thing as self esteem. Don’t let things go to your head either way. I know you know this. I just have to say it. 

I am so proud you don’t have a tonne more ‘followers’ than people you are following. This shows me you are kind and inclusive and don’t see yourself as better than others. It can be rare.

Take selfies. Post them. Have fun! But please don’t post them every day all the time. Don’t ever be that self important or self centred. 

Thank you for not asking for a phone or social media while you were still in single digits. Thank you even more for waiting until you were a teenager. It just made my life as a Mom much easier.

You know the people who make you laugh? Keep them. And I don’t mean the people who put smiley faces on your account. The people who you find yourself laughing outward with. In real life. In real time. Keep THEM.

Always opt for quality over quantity. Your world is not set up for this anymore. But remember that this social media platform isn’t always the real world. One real true friend outweighs the 200 on your social media account. I know that’s sometimes hard to remember. But I know it to be true from personal experience.

You know how everyone uses the acronym ‘ilysm’? You know the little hearts and ‘baes’ and I love yous that float around every day on your Instagram and Snapchat? That’s great! You have so many wonderful friends. And as a Mom I’d rather see these acronyms than insults any day. But when you step back, please know and remember that real love is much rarer than that. Even between friends. Deep down you know the friends who really care for you. Real love is felt … not typed.

Go look up the words friend and like and hangout and chat and share in the dictionary. The old fashioned Webster Dictionary. These terms are being used in a different context now. They really are. Find out where their roots come from.

Take some pictures you don’t post. Take some for the memories you will want to cherish later. Not for the showing off aspect of today. 

Once you hit the send button it’s gone. Learn to type, then pause and count to ten first when you are feeling emotional about something before sending it.

Thank you for not fighting our family’s screen boundaries too much. Thank you for bringing your phone downstairs every night so it is not the first thing you reach for in the morning. Thank you for keeping the door open when you Facetime with a boy. Thank you for paying half of your own phone bill and never complaining about it. I know rules like these aren’t always the norm with your friends and I know it does affect you. I know it’s not always easy being a part of our family and our beliefs that accompany that. I do know that, and I appreciate your respect of that more than you know.

‘Be bigger than the fear of missing out’. Ok. I stole that one. But it’s important. It’s one that I’m still working on even at 43 years old in this social media world. Don’t worry about missing out on things because you aren’t on line 24/7. Be bigger than that feeling. Be stronger. 

Turn off the screen. Close your eyes. Be still. Use your mind and imagination independent of the online world sometimes.

Be thankful for what this digital world offers you. It offers a lot of opportunity and potential for growth. Especially for a bright kid like you. Use it. Explore. Discover. Have fun. 

Everything you type or post is public domain. Forever. Period. I know we’ve talked ad nausium about that one but it warrants a reminder. 

Keep reading real books with real pages. I love that you still do this. Never stop. I love that you adore your Kobo too, but the feel of a real book in your hand – the way it opens the first time you hesitate to crease its spine – the way a bookmark lays in it – there is an appreciation there for the written word that you can’t replace on a screen. I sense you feel this too. Don’t ever lose that feeling.

Thank you thank you thank you for not having two separate social media accounts for everything. One for your ‘friends’ and another for your ‘real’ friends. I think this is awful and elitist and mean and I am proud you are not that kid. I know you are probably shocked I even know about this practice and you would probably defend them and their reasoning … but you drew the short straw in the ‘Mom with strong opinions’ department. Sorry kid.

And finally, above all, very simply, just ‘check in’ with yourself every once in a while. You are a wise, thoughtful knowledgeable kid. You know if your life is balanced in a real way. You know in your heart what is real, what matters, and what is just distraction. Listen to yourself. And then have the courage to put away the white noise for a little while until you can feel balanced again.  

So that’s it kid. Thanks for listening to your old Mom.

I do happen to think you rock … in every aspect of this teenage thing! You are already living so much of this and the balance you choose to have in every part of your life makes me burst with pride. 

I also recognize you have so much more insight into this online world than I do. But you know me …. I just can’t help sharing an opinion or two with my favourite girl.

xoxo Ilysm … 😘 😍😀😛Bahahahaha!!

Mom

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. 

No More Waiting.

I don’t understand why it hasn’t happened yet. It was supposed to happen soon after the Vincristine. I’m confused.

So I ask.

And then ask again.

A different nurse of course. I don’t want to give away my crazy quite yet. There will be plenty of time for them to see “that” in all its glory.

They say it’s coming. Certainly after the Dono and the Doxo. But I can’t help but think, maybe … not. Maybe. Just maybe. Maybe he will be the one kid, ever in the world, that it doesn’t happen to.

Oops. There’s that crazy showing itself again.

Everyone I talk to says how traumatic it can be. For them to run their fingers innocently through their hair and have a clump come out. Not just strands. But clumps. How devastating it is for them to wake up and have them see big chunks on their pillow case.

I don’t want there to be more trauma. At all. Can we be done with the trauma? Please?

But I know this isn’t our reality anymore. I know that our lives will forever be learning to deal with traumatic events. Or worrying about traumatic events. Little do I really know at the time what experts we will become in managing all of this trauma, and later in life how deftly we will navigate worrying about its reoccurrence or side effects.

But I do, at the time, know that I can’t stop this from happening. This loss of hair which seems to be the very definition of what is to come. So I guess what I want more than anything is to “minimize” the trauma. For him. For him not to wake up one morning and look down at his pillow and literally find pieces of himself left behind there.

I’m the Mom. I’m supposed to protect him from trauma. And it seems thus far there has been little I can do to fulfill this role I am supposed to play. I would soon learn this next decision of mine would be one of many I would take that, for me, embodied walking the talk. They wouldn’t all be the right decisions, and they wouldn’t be the easy decisions, but whenever and wherever possible, they would no longer be made “for” me, or “for” him. They would be made “by” me. By him. By us.

So there I was. On the children’s oncology floor. Doing my best to do my best. For him. And selfishly for me too I guess.

And so the day came when I couldn’t wait anymore. I couldn’t wait for chunks to just to fall out. I couldn’t wait for any more trauma. I couldn’t hold my breath anymore wondering how he would deal with one more thing. How “we” would deal. I couldn’t wait any longer. I couldn’t let things be out of our control any more. And I guess I couldn’t wait for our new reality any longer. Because nothing shouts reality more than the bald little head. So I asked the nurses if they had an electric razor. They did. I asked them if they had time. They did.

So off we went that afternoon. After rounds. Hand in hand. To a little room I hadn’t been in before.

To get a haircut.

There were plenty of boys in the world with buzz cuts. Boys without cancer. It was the age that kids get lice and buzz cuts were very common. This buzz cut just happened to be a particularly close one.

This is the part of the story where I would love to say we went in smiling and came out laughing. That it was easy as pie. But no. The experience itself was awful. I tried to treat it like a haircut. I stood holding his hand while he sat on the doctors table, a nurse on either side. He had never experienced a razor before and was not impressed. Razors are loud. Particularly loud in that small room we were in. And he had already been asked to do so many things that were unfamiliar to him, in a place he had never been. The nurses, although they had done it for other boys and girls before, were clearly not hairdressers. He cried. My heart broke. There were times I was surprised there was anything left still to break. But break it did.

When it was done it was uneven and a little patchy. Actually quite patchy. The poor kid. It was honestly the worst buzz cut ever. There were still tufts of longer hair all over his head. I thanked my stars he was so young and never saw a mirror. And while I knew he would still have hairloss it would be so minimal now compared to his longer thick gorgeous head of hair he had earlier that morning. And that was what I had wanted.

As we came out of that little room I thought a lot about the moms of the girls on the floor. I thought a lot about the girls themselves. I thought about the teenagers. How differently it must affect them all. He was a preschooler. He hated the sound and feel of the razor. But once we got back to our room he was more than fine; smiling and laughing with Megan, asking to go to the playroom. One haircut. Check.

And I was like a soldier coming off a difficult but successful mission.

One opportunity have a little control over the amount of trauma. Check.

But wait … one nearly bald kid. That’s ok. It’s ok. It’s going to be ok. It will. No more waiting.

One reality check. Check.

Now let’s get this show on the road.

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.

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.

There’s a Cupboard in My Kitchen

We built our dream home in 2006. When I say dream home though, please keep that in perspective. It is under 2000 square feet … it is no mansion. But it is very much “our” dream home … built in a beautiful, quiet, country setting in Nova Scotia with a stunning view out over the water.

We had waited so long to come home, had waited a long time to figure out the style of home that best suited who we were as a family, and we eagerly drew up the plans ourselves, ready to build a place we would call our forever home.

An absolute must was a large open concept kitchen. We are – by birth and by choice – Maritimers. And by that one small truth, you by default are required to have a large, warm and welcoming kitchen if it is within your possibility to do so. And we consciously planned for that.

We built a big island and tonnes of cupboard space, stained in a cinnamon colour I had them custom make for me. It is after all where Maritmers congregate. It is where we share drinks and food and laughter. It is where friends and family come and cook together and gather together. It is where secrets are told and burdens are shared and laughter rings out.

I knew all of this when I was designing it. I am proud of my strong roots and I knew … I hoped … that our kitchen would prove to be a place of countless parties, potlucks and dinners … with shared laughter and great memories. Eight years later all of this has come to pass. Every single moment. And there is nothing I don’t love about my kitchen. It is my favourite room in the house. Bar none.

What I didn’t know however, all those years ago, is that there would be a certain cupboard in my kitchen.

Now I’m blessed to have many beautiful doors in my kitchen, but this one is to the left of the fridge. I don’t remember if I chose it because it’s proximity to the fridge but I probably did.

This cupboard isn’t filled with spices or wine glasses or pottery. It’s not one of my corner cupboards that hold my entertaining dishes. It’s actually quite unassuming, but would come to be the most important and sometimes most often used space in my kitchen.

It’s my sons chemotherapy cupboard.

And I tell you … when I was planning our kitchen I never thought we’d have one of those!

But so it was.

As we moved into our new home and I unpacked boxes, I sat aside this cupboard for the three and a half years of medications and chemotherapy and paraphernalia we would gather over the years. As I unpacked China and silverware I also unpacked syringes and steroids and supplementary therapies. Side by side these things got put away.

So began our chemo cupboard for our son. There was Septra and ranitidine and methotrexate and 6MP. There were binders full of information and contact numbers galore. There were barf basins and Emla and piles of blood work. Thermometers and vitamins sat along with medication schedules and chemotherapy so poisonous I wasn’t allowed to touch it or even inhale it (meanwhile my son was expected to ingest it on a daily basis). Post it notes were stuck on the inside door and antibacterial wipes and purell abounded.

I would come to access this cupboard as much or more than any other one in my home.

And the thing is, is that I’m writing this in the past tense … which of course that part of our journey is over. But truth be told that cupboard … the one by the fridge … still hasn’t been emptied. It still stands there, waiting for me to take that step. I don’t know when that will be, but I know its time will come, like so many other things did from that time in our Iives. One can analyze that all one wants. But I have learned that things come at their own time and pace for everyone.

So yes. There is a cupboard in my house. One that most families have never had. One that we never thought we would need. But one that served us well, and that sits unassumingly in my favourite room of our home, with cinnamon colour doors and hematite colour knobs. A cupboard that will someday be emptied … when the time is right for me … and one that will hopefully never be used again.

My Clock Radio

So there is this part of my brain that for the last number of years has held dates.

Not “Mom” dates or “Work” dates or “Birth” dates … but “Cancer” dates.

It really does feel like a separate part of my brain.

Visually I’ve always thought of it like one of those old clock radios where the numbers flip over onto themselves. You know which ones I mean? I’m really not sure where that vision came from, but that’s what it is. It’s what it has always been for me. An old clock radio from the 70s.

In my head though it’s not time that flips over, it’s dates.

There have been a slew of dates in this part of my brain over the last years. So many I can’t begin to remember. Depending on where we were on our journey the dates could be years away, months away or only days away. I actually remember a time they were hours. Just hours. Maybe that’s why my brain pictures it like a clock. Because there was a time my goal was hours.

But regardless of how they were measured – hours, days, months or years, there have been very distinct goals – milestones – for us. The next place to reach for. The next place to get to. The next step closer to recovery.

But I never ever got ahead of myself. I was always very good at that. One date at a time. That was it.  Never look too far ahead.  Give myself a goal – something to reach for – but not too far away. Concentrate on the next date. Did we get there?  Good.  Acknowledge.  Celebrate.  Whisper Thank You.  Then my brain would flip to the next one.

No more Daunorubicin.  Good.  Check.  Acknowledge.  Celebrate.  Whisper Thank you.  Next.

Last Lumbar Puncture.  Good.  Check.  Acknowledge.  Celebrate.  Whisper Thank you.  Next.

Bone Density, Wall Motion, MRI, EF, Neuro/Psych/GI consults.  Good.  Check.  Acknowledge.  Celebrate.  Whisper Thank you.  Next.

But now it’s October 17th, 2014.

And do you know what the next date on my 1970s clock radio is?

It’s tomorrow.  October 18th, 2014

And do you know something?  There’s no date after that on my clock radio.  No more measuring time according to cancer.  Do you know why?

Because tomorrow – my son will be five years chemo free.

For five years his body has stayed in remission all by itself – with no help of any drugs whatsoever. No 6MP or Pred or Dex or Peg or Dauno or Doxo. No Vincristine or TG. No platelets or IGG or Whole RBC. No Methotrexate or Septra . No needles in his spine or legs or chest or arms. Nothing helping him stay in remission.

Five years.

Three years was the brass ring. Three years was when our lives changed. If he were to relapse the odds were it was going to be in the first three years off of chemo.  But five.  Five years is the magic.  The moon.  The stars.  If three years was the brass ring, five years is the gold medal.  The standard in cancer care.

I don’t know what will happen to my clock radio now.  I don’t know if it will find another date to focus on, and stay vivid in my mind, or if it will be like so many other things in the past years and fade away to another part of my brain … still a part of me – still present – but not so defined.  I don’t know what it will be like.  But I do know this. I am thankful for that clock radio.  I’m thankful for it as a coping strategy – it kept me focused and on track – It kept me aware of what was important.   I would keep saying to myself … “Get to this date ….  Just. Get. There.”

And now.

Tomorrow.

October 18th, 2014

Good.

Check.

Acknowledge.

Celebrate.

And above all … always … Whisper Thank you.