Category Archives: Challenges

Finding My Balance

For years now I have struggled with my relationship to social media. That fine line of enjoying it in so many ways but sometimes feeling uneasy with its use in my life.  

I have taken those feelings to the extremes of both using it too often and “searching” for something I wasn’t even sure of, and also to the other extreme of walking away from it all completely and logging off for months at a time.

Back around November I decided to take stock again with this phenomenon I’ve allowed into my life, and do a little soul searching about how I was feeling about its place in my world. What I found was that I had surprisingly come to a place of feeling more balanced than I ever had in the past about its role.

The following are some thoughts of where I have found my own personal balance and comfort level. 

I should preface this of course by saying that this is my balance. We all have different comfort levels, and your balance will be different from mine. And mine will be different itself in one months time, or one years time. I have interestingly learned that mine is fluid and changes based on a whole slew of things in my life. 

But I do strongly feel that the world can be a better place if we are all conscious of where we are on that spectrum of use and that we are choosing to be where we are.

So for me, for now, here are some things that have helped me find my balance in what I feel is an over-connected world.  

No Data

I don’t carry data on my phone. (Insert gasp here). So unless I have wiifii I cannot connect to the broader world. I made this a conscious decision when first getting a smart phone. It simply limits my ability to connect. Plus my phone bill is $15.00 per month. Literally. So, you know, I kind of love that.

WiiFii Turned Off

When I do have access to wii fii (which let’s face it is almost everywhere now except my vehicle) I don’t leave it turned on. When I want to go search something – whether it’s Facebook, E-mail, Google or Instagram, I go into my settings, turn it on, and when I finish I turn it off. Sounds archaic right? I know!!! But I swear it’s where I have found my comfort zone. 

It makes me very purposeful about being connected and not passive. I find that instead of “reacting constantly” to beeps and notifications I instead “act when I choose to”.

Not Bedside 

This started as a rule when my kiddos became connected. We felt strongly it shouldn’t be the last thing they look at before bed and not the first thing they reach for in the morning. 

At first I didn’t apply this new rule to me. My phone was right there on my night table. But after awhile I realized how important it was for me to “sit in my own thoughts before I start the day.” To be quiet with myself or to actually talk to my husband before reaching for my phone to find out what everyone else is doing. Why would I want to start MY day all about someone else? Even the news is about someone else. 

It was a bit of a struggle at first. Scratch that. It was a huge struggle. Try it for a couple of days. It isn’t easy. It had become habit, reaching for that phone in the morning. But I’m glad I did it. It’s how I want to choose to start my day.  

Craig still chooses to keep his on his nighttable. That’s his choice and I’m absolutely ok with that. My choice is the right one for me.

The Share Button

I have an entire other blog post in my head about sharing in today’s world, so I won’t go into this in depth right now. Suffice to say that I love to have fun and share lots of different things – some serious and some silly – often I’ve found with no rhyme nor reason. 

But the one thing I know for sure – sharing something does not make that experience, or my life, better. At all. And when I do share I am very conscious of who else is a part of that share – especially if it involves other people.

Using FB Messenger

I didn’t understand the FB Messenger App for a long time. Why not just use the message button on FB? It’s like right there!! But now it’s one of my favourite apps. It allows me to converse with people, and often groups of people, I want to without having to be on Facebook itself and hear and see the endless posts and notifications. With Messenger I’m making a choice about who to engage with and I don’t have to deal with the white noise. 

Addressing FOMO

This is a rough one for me. I am social by nature and enjoy being out and about in the world. But I’ve learned that having these caveats in place for myself will inevitably lead to missing out on things – since I don’t carry data my iMessage group chat is very rarely on, I don’t see general posts as quickly as others do, and I’ve realized sometimes miss them entirely. That took some getting used to, but I’ve become pretty ok with it.

Modelling 

There are so many things I do a poor job modelling with my kids. But I want screen time and social media to be one I atleast TRY to walk the talk with. It is the largest influence in their world. Period. 

When they look at me I don’t want them to see a phone in my hand all the time, or hear beeps all the time, or see my face in a screen. It’s very important to me. Because I’m asking – no – I’m insisting – the same from them. So when I come home I make sure my phone is not on me or beside me all the time. It’s important what they see (or don’t see) and it’s what I want.

One Screen at a Time

This is another rule we have with the kiddos. (Yes – we are “these parents”). Not all kiddo rules apply to parents on the Bluff Road but this one makes sense to us as well. So if I am watching TV I won’t be on my phone (or tablet or laptop). Besides, my pea size brain can only process so much stimulation! 

Talking is the Priority

I love talking on the old fashioned phone. I have a friend who rarely a week goes by when we don’t call each other. Sometimes they are long deep conversations. Often they are silly 5 minute touch-bases. She will never know how much those mean to me and how connected they make me feel. And texting. Well if I can’t have the old fashioned phone I will take texting over social media. I know texting is still a screen but it’s me engaging with someone in a purposeful way. One on one. Which brings me to …

I am Not Interchangeable.  (And I will not make you interchangeable)

There seems to be a growing trend of just putting something out there in the social media world, where your 325 friends see it on your wall, with a broad leading question attached to it, about an informal or formal social gathering. From these posts come numerous responses. It seems that we are valuing “any” interaction over interaction with people of our conscious choosing. It makes for a feeling of interchangeability. “It doesn’t really matter “who” I do that activity with … the first few random people who see my post are good enough for me.  

Addiction

I left this to the last because I think it’s the one we need to talk about most in our society right now.

Addiction is real and I do believe some people may be more prone to it than others. I also believe in this social media world that that number is growing – and growing fast. 

 
If we all made a pact to be without our phones and social media for just one day a week could we do it? I think we would all say YES!!! Yes ofcourse we could!!! What a silly question! It’s only one day! 

But let’s ask ourselves … how many times – in just ONE DAY – do we check social media? How many times? How many times do we scroll and refresh that feed? How many times are we just searching for … what? 

Really. Think of a number. Say it out loud. I think the number is scary and I think it’s why I have tried to put these caveats in place for myself ….

Because I guess the bottom line for me is this:

I’ve realized that “being on my phone” isn’t “who I want to be” in the world.

She Called Me Back

Three years ago I went through a hard time and struggled with some emotional and mental health issues.

A lot was behind me. Or so I thought I guess. 

But this post isn’t about what I was going through or why. My issues did end up being something I should have expected … they just “arrived late to the party” so to speak.

What this post ‘is’ about is that we all go through hard times, and sometimes although it should be easy to ask for help, especially when you have amazing friends and family like I do, the reality isn’t always as easy as we may perceive.

It was an evening after the kids went to bed. Craig was travelling on the road for work. I had been talking to a friend on the phone and when I hung up, well, that was it.

I broke.

I don’t mean I broke down crying (although I did … a lot) and I don’t mean had a psychotic break (although the potential was there) … I mean I broke in a way that’s difficult to explain, but somehow I know it’s the exact right word to use.

I had never in my life experienced anything like it before. I had been through years of unfathomable situations, and not once did I feel the way I did that night or those months that followed.

I managed to get from the chair by my desk in the kitchen to the sofa in my living room.

I felt if I didn’t reach out to someone that I may lose myself. That sounds melodramatic I know … but it was very truly what I felt. I needed help in a way I never had before and somehow I knew that. 

There are moments in your life that are core memories. Me sitting on that sofa was one of them.

So there I am. Sitting on my sofa in a state I had never experienced before. Even through everything I was the strong one. I was the positive one. I carried the weight. 

What the hell was THIS?!!??

So I picked up the phone. Now this is the point in the story you expect to hear “I dialed a friends number, easily poured out my heart, hung up the phone and it was a rocky but manageable time.”

It didn’t work like that for me. At least not that night.

That is what you see in the movies. In reality – in my reality – it worked like this.

I made a total of four phone calls.

The first call I got my girlfriend on the other end. But because I am who I am (an idiot) I started small talk. I could tell it was a very busy time of year for her and that her life – her cup – was quite frankly overflowing into a soon uncontrollable river … just like so many of us Moms who delicately juggle 20 more balls in the air than we should. We know each other so well and are alike in many ways.

So I hung up the phone with nothing said.

I didn’t want to be one more thing. I didn’t want to be a burden. I think this is sometimes the catch 22 with our closest friends and family. We care so much about them and what they are already dealing with in their lives. We don’t want to be a weight. We want to be the one to ‘lift’ the weight, not add to it. I know this is how I felt that night with her, and I know it’s how I feel with those closest to me like my Mom and Craig.  But it’s not right, and I can feel them yelling at me through this post as I type it.

The second phone call resulted in another girlfriends answering machine.

I left no message.

I was quickly running out of people I could be so raw and real and scary around.

Call number three was a chance.

It was to a friend who had only been in my life a few years and quite frankly we hadn’t had many soulful conversations – just ones that touch the surface of our lives – kids, work, school, activities – but I felt there ‘could be’ something deeper there between us.

So I called anyway.

She was home.

She was also in the middle of kid-crisis mode – her son had a significantly large project due the following day – of which he had barely started. So she was up to her ears in deadlines.

Once more I made small talk and hung up the phone.

Certainly these are examples of what NOT to do when experiencing an emotional breakdown. I should have “taken care of me” more and been honest with these women. I should have worried less about disturbing their lives and poured my heart out. And although that’s easier to say than do when people are busy, I do also know that each of them would have been there for me, but I didn’t give them the chance to do so.  

I think it’s hard to admit, but my hesitation to disturb these women’s lives, these friends lives, is an all-too-common trait as mothers and women in the world. It’s one thing to say it – it’s another thing to walk it. Especially in a moment when I was so vulnerable and terrified of what was happening to me.

So we are on to call number 4. Looking back now it amazes me I even picked up the phone 4 times. It isn’t like me to reach out for help in that way. I think it’s a testament as to how bad it was.

I remember sitting on the edge of the couch and kind of slipping down off of it. “Well that’s stupid”, I thought, as I sat on the hard floor crying. That IS something that happens in the movies. Who falls off a couch?? 

And then it became hard to breath and I really thought I may be experiencing a true mental break that I may have to call an ambulance for. It sounds so absurd as I type it – but that is the state I was in.

So somewhere I found the strength to pick up the phone again. 

This call was a risk as well. Someone I knew on the periphery of my life, who I would absolutely call a friend, but not close. She did however, always have a depth that I ‘recognized’. I looked up her number in the phone book (a pretty good indication of our lack-of-bond). I remember thinking how small the print is in the phone book and how hard it was to read.

Ring. Ring. Ring. Ring.

No answer.

That was it.

I had nothing left in me to reach out. I was done.

At that moment I have never felt more alone in all my life. I’m trying to think if that’s really true and I think it is.

And then – the phone rings. 

It’s her.

And I pick it up.

She saw my number on her display. Or she star-sixty-nined me. I don’t remember now.  But there she was. 

The minutes, hours and days that followed is a long story for another time. 

But I will say, that after a few months, and then a few months after that, I finally was on the other side. I had symptoms of delayed Acute Stress Disorder. It is similar to Post Traumatic Stress Disorder, and ofcourse it was a no brainer it had finally come home to roost after seven years. It was time to break. Time to stop being strong. And combine all of that with turning 40, preparing to shave bald, and hormones … well … it really is miraculous it hadn’t happened before this.

I often whisper thank you for finding the strength to ask for help during that night – and I carry with me many lessons learned about being better at asking for help ‘the first three times’ no matter what.

These many years later there are still things that are crystal clear from that conversation during my ‘fourth phone call’ and there are many things that are not. But the following two I remember with great clarity:

Her saying: “I’m so glad you called”.

And me thinking: “I’m so glad she called me back.”

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.

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.ÔĽŅ

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 … ūüėė ūüėćūüėÄūüėõBahahahaha!!

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.