Never stop. Never stop fighting. Never stop dreaming.

You never think this is going to be your normal.

Sitting out back on the playground at RMH, to the untrained eye it might look like a regular old gaggle of kids riding bikes that are way too small, and buddying up on scooters trying to knock one another off with dodgeballs..

Upon closer inspection you can see the small differences- the things that set us apart.. small heads scarce of hair, bags of fluid pinned to the outside of clothing, tubes and wires.. telltale signs of what we all have in common.. the invisible string that ties us all together

It’s strange how comfortable uncomfortable conversations are within these walls; people introduce themselves along with their children, and their diagnosis, just like that; like ordering a happy meal- ‘I’ll have a Big Mac with a side of cancer’.

I find myself quickly engrossed in intimate conversations with strangers- we talk about healthcare, and medications as easily as women talking salons over Starbucks- it’s a odd comfort.. but the resentment that trails it is… is too prominent. Sometimes it’s so much that I feel suffocated; I’m gasping for air, and no one looks up, no one even flinches.. I don’t even flinch.

Every time I stop, stop fundraising, stop working, stop going, going, going I feel like I am going to drown. So I don’t stop, I can’t stop…

We went to clinic today, things seem good, constant. Still a few unanswered questions, but we are working on it, a few small changes and additions, but all in all the doctors seem happy with where we are; home again in the morning, hoping for a hot and healthy summer

Xo

The Labontes

Advertisements

The only impossible journey is the one you never begin

I said goodbye to my main Man tonight. Two weeks- it’s the longest we’ve ever gone without seeing one another, without talking to each other.

I am not sure who is handling it worse, him or me.

I helped put together a ‘Feel better bag’ for him- to help understand and deal with his emotions, I hope it helps. Me, I’ll probably be too tired to feel a lot, or I will feel everything and be a complete wreck. I guess only time will tell.

My rational brain is screaming at me- telling me it will all be fine- that in two weeks I’ll be back here, Seamus in my arms, telling him stories of my adventure; and then, I’ll be sad it’s all over.

My emotional brain? It’s telling me tales of not making it back to him..

I got to the airport disgustingly early this morning, after a long night of goodbyes and good drinks, and my dad- who rarely calls me- in his defense he works harder than anyone I know- calls me twice in a span of 20 minutes- and he says to me:

‘Your boy will be fine. His papa will visit him.’

And then my dad, who I’m sure has really great advice, but believes that hard work kind of, well, fixes everything; says to me:

‘You have to remember that there is an Amy in this world too’

And honestly, I think through the last 10 months, getting ready for this incredible experience, it’s the thing that hit me the hardest.

I admit, that sometimes I forget I matter. I leave doctors appointments to the last possible minute- if I go see the doctor at all, sometimes I find myself picking at leftovers long after Seamus has gone to sleep, if I remember to eat that day; I always think back to when my shrink first asked me what I did for me.

Well, that seemed like an easy question:

I’m a mom, I’m an advocate, I’m a fundraiser, I’m a cheerleader and a karate sensei if need be- I’m actually a very busy person. I watched in silence as she furiously scribbled down all these answers, and then she put the notepad down, looked up at me and said ‘ok. So what do you do for YOU?’

This conversation was almost two years ago, and sometimes when I am asked I fall back into my usual pattern- I’m a mom, a fundraiser, an advocate.. etc; and it takes me a bit but I always come around to the fact that everything I do, everything I did was for Seamus. I didn’t even have one little part, one little thing that I did just for me.

They say healing isn’t linear, and I believe this to be true; over the past almost two years I have cried a million tears, I have spent hours in bed, my anxiety has been so bad I have slipped back into paranoid thinking- but, I have also gotten an amazing job that I feel successful at, that I love– that sends me home after every shift feeling accomplished and worthy; I said yes to join a group of 30 people I don’t know, to a trek to Machu Picchu through the Lares Valley- two years ago, hell even a year ago, I wouldn’t have been able to go.

I have made progress- and progress isn’t linear, and it doesn’t look the same for everyone- but the progress I have made is something no one can take from me- even though they have tried.

I have just finished the first leg of what I am sure if going to be an amazing journey- hopefully a little sleep, and a long travel day tomorrow!

#Peru bound! #MachuPicchu #climbforacure2019 #cysticfibrosis #advocatelikeamother

A mother’s love for her child is like nothing else in the world

I always said I would go to the ends of the earth for you- to find a cure-to save you.

I never thought the ends of the earth would take me to Peru; I guess a part of me never thought we would still be fighting eight years later..

Cystic Fibrosis Canada’s first International Walk for a Cure will take place the last week of May, in Peru. I was chosen to be one in a group of 30 who will hike to Machu Picchu to raise money and awareness for cystic fibrosis.

I have repeated that paragraph in my head every single day for the past 10 months, and until a few nights ago, it didn’t feel real.

I have been hiking and doing at home work outs when my mental health permits, I have been slowly accumulating things I need for the trek- but it wasn’t until the other night that I pulled out my backpack and ‘to get’ list that it hit me..

In 14 days from now I will be on plane, on my way to conquer one of the seven wonders of the world; I am so grateful. Grateful for the opportunity, grateful that there is a community behind me; supporting me every step of the way. I am grateful to go on this adventure with a group of people who in, one way or another, are fighting the same battle as me.

And, at the same time, I am so… pissed off, for lack of a better term.

Everyone has been so supportive.. From donations of money and things needed, to time spent hiking, I am lucky… but when it comes down to it, I am literally going to the opposite end of the earth, to climb a mountain, to try and save my sons life- and it’s fucking daunting..

Honestly, sometimes, I just want to live a regular life – I want Seamus to live a regular life; and it makes me so mad inside my head that I think I might actually explode.

I never thought this is where we would be.

I guess you never really think about this part during those 9, or in my case, 10, months of pregnancy. You envision birthday parties, school dances and science projects, not hospitalizations, PICC lines and treatments. You don’t ever think you’re going to outlive your kid- let alone think about every single day.

I don’t take this opportunity for granted, I don’t. But I would give it up in a heartbeat. People keep asking me if I am excited, I want to tell them yes! Of course I am- with a smile of course, but, my heart is sad.

My heart is always sad.

I hope this trip brings me clarity, and inspiration, I hope that it gives me.. well.. hope.

Yukon’s 7th Annual Walk to Make CF History💜

When the heart is down and the soul is heavy, the eyes can only speak the language of tears

My mind feels haunted today, with ghosts of the past; things I have long since let go of somehow became ammunition in a gun pointed back at me.

I have worked hard to get to where I am, I have been wading through darkness for so long, overcoming obstacles that keep popping up like whack-a-mole. I’m far from perfect, but I have worked so diligently to be a better, healthier version of myself, and part of that journey has been forgiving myself, and others for past behaviors. I spent a long time living in the past, spending countless nights replaying arguments from the days before- feeling the hurt like it was fresh each time I mulled it over again in my mind. Chewing my fingertips raw, biding my time before the next attack; what form would it come in? Aggression, manipulation?

It’s hard to distract myself away from spinning. I go over the days events in my head- each small detail picked apart like vultures on thanksgiving- cleaning every morsel. I grapple with my reactions; why do I give into them? I have spent almost two years learning, teaching myself not to fall into these traps. But there’s no one to come to my rescue- there is no one to halt the attack- so I feel the need to defend myself. But why? I have come to terms with my decisions, with my past; I have gone over detail of the hurt and betrayal I felt, I have forgiven myself for not having the ability, or the tools to make better decisions in times of crisis. I have done the work.

So why, why has my mind run all day? Why is the too familiar feeling in the pit of my stomach not easing with each deep breath? Why am I being punished?

I poured some more lavender essential oils into my bath- I’m not sure what it’s supposed to do- but it smells good.

I am so tired of fighting. Of feeling like it’s me against the world, well me and Seamus; sometimes I want someone to go to bat for me. Sometimes I want to feel supported when I have to make the tough choices. I’m tired of always feeling like the bitch because I speak up.

So, instead I don’t. I don’t say much- only what’s necessary, avoiding all land mines- walking on egg shells constantly, because what if I can’t do this again. This fight.

I always have to check in- where’s my head at? My heart, my anxiety, my depression.. can I handle this right now? What if I can’t? What if it gets used against me? There’s so many what ifs in this life- and today they are weighing on me so heavily.

I just have to make it to tomorrow.

I feel like I’ve been saying this every day for awhile. I just need to make it through- one more day.

Today is the first of May- cystic fibrosis awareness month.

As if things weren’t heavy enough.

Hoping you’re all happy, healthy and loved

Seamus and I ready for baseball season💜

Add life to your days, not days to your life

I skimmed through my blog today; that only really happens when I am feeling nostalgic, or maybe looking for some clarity, and as I scrolled to the bottom of the page my countdown to Peru reminded me that in 24 days my life is going to change forever.

I signed on for this adventure 10 months ago – I threw my name in the hat after one too many brunch mimosas, thinking I would never get picked. Cystic Fibrosis Canada was putting on the first ever International Walk to Make CF History in Peru and there were only so many spots! The trek would take participants on a six day hike through the Sacred Valley, and up to Machu Picchu, with each person needing to raise a minimum of $4,200; one dollar for every Canadian living with cystic fibrosis, or CF.

I figured I had 10 months — I knew hitting my fundraising goal was going to be the easy part; coming from a small territory like the Yukon we have an incredible support system of volunteers, sponsors, and donors. No, $4,200 was not what scared me, what scared me, and what still scares me is being ready, physically. Though I have lost my initial 20 pounds, putting me into the 180s for the first time since I was in, and since ended, my last, and incredibly unhealthy relationship- my goal was to be in the 170s and I feel like I have fallen short.

I know what you’re thinking: 20 pounds is awesome! I might not have hit my goal, but I have made good progress, and I still have 24 days…

It’s not that I don’t agree with these musings, and I am trying to focus on the positive – but as D-day closes in on me my anxiety is at its peak, and my cloudy mind is struggling to see any light. The more I think about it, the more anxious I become; it has become a vicious cycle, a merry-go-round that never stops. I can see that I am spinning, my rational brain tells me to take a deep breath and ground myself, but I look up.. and the outside world whizzes past me in a sea of colours and shapes I can’t seem to put together.

God, why can’t I just be normal. Why can’t I just be excited that I got picked to go on the trip of a lifetime- with people who share a piece of my heart, and my heart ache. Sometimes at night, when my mind won’t quiet down I try and picture myself at the entrance to Machu Picchu- having just finished hiking for 6 days, being tired, and dirty, exhilarated, and inspired – standing there, holding my breath and taking it all in; I imagine the tears of triumph streaming down my face — a perfect hallmark moment.. I will look thin and radiant.. and then once again, I find myself back in my dark room, breathing heavily, my eyes darting back and forth, wondering what the noise outside is. Is it someone trying to get in? Did I lock the doors? The paranoia seeps into my thoughts, flooding my mind, and now, like clockwork, I know I won’t sleep.

I digress.

24 more days, 24 more nights until my life will change forever.

Training with Jecckya❤️

It does not matter how slowly you go as long as you do not stop

Recovery.

When people talk about recovery it’s most commonly used when talking about alcoholism, or drug addiction. Only since the start of my own recovery journey did I hear it used in conversations about mental health.

re·cov·er·y/rəˈkəv(ə)rē/noun

1 .a return to a normal state of health, mind, or strength.

Being in recovery is something I have heard hundreds of times over the last 18 months. Being recovered? Not so much. Battling mental health issues is like battling any chronic sickness, do you ever get better? Or do you just learn to survive it? Do we just learn how to numb ourselves from the pain the best we can. Like living with a broken hand, do we just learn to write with the other side?

The brain is a mysterious thing. Growing up I can think about times where I felt alone, anxious, worried that everyone was going to leave me. I can remember spending nights in my room crying, wondering if I was the only person who felt the way I did. But I had a good childhood, parents who loved me, food to eat, a home – well, numerous homes, but all the same; my sister and I, we grew up pretty normal. After Seamus was was diagnosed with cystic fibrosis the anxiety got worse. The need to control things around me, everything around me, grew much larger than I had ever thought possible. It left me in a constant state of anxiety, like I was always waiting for the other shoe to drop.. nothing I did fixed it. I went through periods of cleaning my house so thoroughly you could eat dinner off the kitchen floor, to not being able to get out of bed and face the day. When I was up I was SO high, but then, as it always does, when I finally came down it was a steep dive into a hole so dark I couldn’t see which way was up.

Manageable at first, it was easy to play off as just being a tired new mom. Sleeping when the baby slept, eating sometimes not for days- then binging on everything in sight, leading me to put on more weight, which led me to not wanting to leave the house; and then one day, I blinked – it was 6 years later and to say I was drowning is putting it lightly.

One day I looked in the mirror and I didn’t recognize the girl staring back at me- what was there, what was left was barely a shadow of my old self. I remember studying my face, trying to catch glimpses of a smile, or a sparkle.. something familiar, anything at all. But, nothing. I had completely lost myself, and for awhile I thought I would never find her again — sometimes I still think I won’t. Not the old me anyway. I think when you go through trauma, when you come out the other side of something that should have torn you to pieces you are never the same. I don’t think that the old me exists anymore, outside of pictures and a faint memory I have of some resemblance of normalcy.

In recovery. That’s where I have spent the last 18 months, that’s where I am now, and I am not sure what is on the other side, if there is another side – maybe this is it, maybe I just try and survive each day, maybe this is the new me. I still have days where I look in the mirror and am not sure if I know that girl… I have days where I am so high I feel like I can conquer the world- and the fall that comes after the high is still just as intense, but I am still here, and sometimes that is the best I can do.

Home away from home

The hustle and bustle of Ronald McDonald House is familiar, and somewhat comforting.  The easy to wipe down leather couches are perfect to spread out and relax while we wait for check in.There’s more people than usual in the foyer this afternoon. Each mom keeping one eye on their kid as they run in packs up the stairs, down the slide… not one question about the NG tubes or scars.. except Seamus- he knows the drill; announce to his friends that he has CF to ensure he is the only one in the group.. all the moms keep to themselves at first, noses buried in phones or books, or simply dozed off with their eyes open. A conversation starts slowly, until a few key words are dropped.. ‘diagnoses’, ‘oncologist’, soon a discussion breaks out between moms who have found a common ground. I am immediately back thinking how isolating cystic fibrosis is. How nice it would be to have some friendly banter with a mom on the freshly cleaned leather couch while the kids are in the yard complaining about treatments and medications together…
It’s wild, the things I’ve come to envy.. to crave. 
I’ve talked Seamus through our plan for tomorrow. It’s his annual check up, so there is a full slate lined up- including blood work. It never used to be awful, I mean, it’s no tea party, but ever since our hospitalization in Whitehorse where they poked him 17 times over two days trying to get blood and place a decent IV, needles have moved up on the ‘hate list’.
It’s beautiful and sunny, we went out for brunch and did a little post flight shopping; it’s not all bad. Tomorrow the House is taking a group of us to Science World, a favourite of ours, but frankly, it’s just not always in the budget- or ever. A CF silver lining I guess.
Clinic is finished now, it was fairly quick and painless. My rational brain is yelling at me ‘see! I fucking told you it would be fine!’ and my poor heart is finally back to regular speed. All signs point to healthy. The three weeks of antibiotics have done their work and his cough is now a dull, dry hack, he’s gained a little weight, grown a little taller; and his pfts, well he’s literally blown the doctor away- 122%! For a CF kid – this is, it’s beyond what we could hope! It makes me feel like all my crazy and all his dedication is paying off; he’s such an amazing kid I am grateful for his willingness to be educated about CF, and work so hard every day on his treatments and meds. I’m a proud mom today.
Part of me finally feels like I can relax a bit- and the other part of me is anxious to get home and get right back into routine- what we are doing is working, and I just feel like we need to not even miss a beat. I love this news, Seamus loves his prize for kicking ass— this should all lead to just taking a fucking break, but it won’t. And that’s ok. It just has to be ok. 
We are tired. But we are happy.
We hope that you are all happy, healthy, and loved.
Xo

Written on March 20, 2019

Christmas conundrum

Here we are again.
Another year gone… how much has changed.  I am not sure what I want this Christmas Season. A cure…always a cure.. but I have come to the harsh realization that it is something that no wish can make happen.  That nothing short of hard work, blood, sweat and tears will give us the gift of a cure; the gift of life..
I can’t help but feel a bit lost.
There are so many things to feel grateful for. As I have let go of many toxicities, the repercussions of that have been glorious.  Positive outcomes have latched onto me as fervently as darkness has consumed me in the past… I am appreciative. 
And though I feel finally at peace with myself, and my choices of the past year, which have led me here to this place of contentment I still feel… empty. Emotionally drained to the point of having nothing left. Not sadness, not loneliness.. just nothing.
Maybe I am being a martyr. 
I feel the familiar pain, pulling at the back of my throat. Reminding me that it can rear its ugly head at any time; that no matter how far I run, I can never truly escape. I am trying to keep my eye on the prize, to remind myself how far I have come.. and yet the quiet of my room, the safeness of under the covers looks better than any present that may find its way under our tree.
I keep trying to move forward but I am paralyzed. I keep trying to remind myself that I am not alone, that people care, that not everybody leaves… but the sureness of my voice in my own head wavers. 
I keep trying to remind myself of the happiness I have felt so recently; all I can see is the darkness that is trying to pull me under.  
In a few short hours the pent up excitement over Christmas will commence. We will laugh, and shout, and love. I’ve just gotta hold on until then.
Hoping you’re all happy, healthy, and loved this Christmas season.Lots of love, from ours to yours. 

Written on December 25, 2018

If you want to make the world a better place Take a look at yourself, and then make a change

Change. It doesn’t come quick, and it sure as shit doesn’t come easy. But, nevertheless, it comes.

This past year was probably the toughest that I have had. Anyone who says personal growth comes easily, well, is a fucking liar. It comes with pain, and sadness, and harsh realizations… but after all of that; after facing your fears, after admitting there is a problem to be fixed, after coming to terms with the fact that this journey is going to be littered with lost relationships, and lonliness, something incredible happens..

One day you wake up, open your eyes, and realize that some of the fog that you’ve spent years wading through has lifted; that maybe today is going to be the day that you wished would come.. the day when your first thought isn’t soul crushing self doubt and hatred.  When you look in the mirror and notice that the person looking back at you feels.. stronger, more confident, maybe even.. happy. Maybe.  Instead of dreading every appointment, class, dinner date, or personal interaction, you are able to put on a little lip gloss, some winged eyeliner, grab your to go coffee, blast the music in your car, and look forward to what the day might bring you.

I feel incredibly grateful to live in a country, and in a territory, where when I realized that I was drowning, that I was able to reach out for help that was readily available to me.  And I am lucky to have a support system that is so amazing, that with all of these things I was able to step back from my life and see that I wasn’t living; I wasn’t even surviving, and something had to change.

I spent the better part of the last year crying; crying for things that I didn’t know I needed- things that I never thought I was even allowed to ask for.  As a parent of a special needs child I feel constantly that I have to be the strong one; that I had to give the pep talks, and take down the information, and raise the awareness and the money, and try and save his life.  Every single day I felt like I let someone down, that I didn’t do enough to help Seamus live his best life, his most healthy life.. I felt like I was repeatedly failing, and nothing anyone could say or do could convince me otherwise.  I had a very large black cloud over my head, but because I was so caught up in my depression I couldn’t even see it.. I didn’t know I needed help until one day my entire life felt like it came down around me, and I realized that I had pretended to be strong for too long – that it was time to take a break from the constant GO GO GO that is the life of a CF mom, take a deep breath, and figure out what I needed to continue on.

It’s hard to be selfish. But as I’ve learned, sometimes it is completely neccessary, and it’s ok to ask for things that you need; from your relationships, and from yourself. It’s ok not to be ok. Say that again, IT IS OK NOT TO BE OK. I told myself this every single day for the last year- and I am telling you, that it’s ok; to be sad, to feel confused, to make mistakes, and to do what you need to do to move forward.

I never thought I would be here. I never thought that there was going to be a day where my anxiety didn’t force me into days in bed, and my depression didn’t convince me that I was all alone.

I still find myself often in tears, sometimes my anxiety is so bad that I have to cancel plans, or reschedule appointments, and some days I am so overwhelmed with sadness that I think it may never stop… but it does.  I know that my problems have not been magically fixed, but I also know that I have overcome so much in the last year, and with the help of many therapies, and medications, long talks, and good friends, that it’s possible to find my way through the darkness. And there is a light at the end of the tunnel–that it does get better, and that I am strong enough to continue fighting- for Seamus, and for me too.

Written on November 18, 2018

The beginning, the end

It’s been awhile.
I haven’t had much to say lately; well, truth is, I’ve had so much to say, but I can’t seem to put my thoughts into words.
I’ve received emails from readers wondering how we are- thank you for your kind words and thoughts- they are read and appreciated. 
Grade 2 this year. So far, seamless. Amazing new teacher, another great (small) class. Seamus seems to be feeling like his best self- thanks to a lotta love, and a little red hair dye. 
The colour coded schedule and information sheet has gone out, discussed, and agreed on- the same yearly CF info letter went home in backpacks- not as well received as years past; but all the same I feel like I covered all our bases. It’s.. routine now. It doesn’t feel all new and scary.. now it’s… well, old and scary. 
I wonder if that anxiety ever goes away. The worry of the germs, bacteria, flu season.. I wonder if at some point we just come to terms that that is life and deal. Is it just me? Am I alone in my worries? Are my anxieties in my head? I start to think of these things, repeatedly; obsessively… and then it happens.. again.
We lose another person. Each one feeling a little more personal than the last; this one.. it hurts. It hurts a lot. Claire was.. something else. A trailblazer, a woman of wonder and excitement; hilarious, yet so real. It’s a devastation to our community.. I see it on every news channel, Twitter, Facebook: Claire Wineland loses her battle to CF at 21 years old. More than all the news, more than all the articles, I see it on my friends faces; I feel it in their hearts. Every single loss is personal. Every single loss makes me second guess myself, my choices.. everything. 
What can I do to stop time? How can I work harder? Fundraise faster? Spend more time with him?
I was chosen to hike to Machu Picchu in May of 2019- to raise awareness and funds for cystic fibrosis. Each person has to raise a minimum of $4200 to go.. $1 for each person in Canada with CF.. My start has been slow, but our ideas are flowing and I am feeling confident that I will reach my goal in time. 
But will it be enough?
Is it ever going to be enough?
I hope so…
I have to hope…
This is my page. If you feel so inclined to help us reach our goal, we would be forever grateful.👇🏼

Here’s my baby. Here’s the reason I walk, hike, knock on doors, scream, shout; here’s my reason to fight.

Here’s Seamus, 7 years old, fighting to make it to 80.

Written on September 4, 2018