I’ll take one depression, on the rocks

It’s been four months, almost to the day since I have been able to sit down with myself and really let myself feel all these feelings I have had to store away just so I can survive.

As we come to the halfway point of the summer that was never really a summer, I can feel the anxiety creeping up into my throat. Big decisions are around the corner, life changing decisions, and I have never felt more alone in my fight. I want to do what’s right, but how the hell am I supposed to know what the ‘right’ decision looks like? I want to protect my baby, that is always what is first in my mind, I want to keep him close to me, and shield him from the illness…and the madness. As we make it through with no cases since April I can’t help but feel, as we open our borders and our lives, the impending 2nd wave, and I feel sick.

The past four months have been.. difficult to say the least. I am doing my best to juggle it all – work, Seamus, staying healthy, staying mentally stable.. it’s proving to a be a lot harder than I had planned. I leave work in tears most days, my rational brain is telling me that keeping tight restrictions is keeping our people safe, but my bleeding heart feels so sad for the people unable to see and touch the ones they love. I find myself wishing that I had a hand to hold, someone to confide in, someone to help me through the hard days which are coming more often as our territory moves quickly towards phase three of reopening.

I find the people here… arrogant, cocky, and frankly disrespectful. I go to the store as little as I possibly can, when I do I wear one of the many masks that we own because of CF clinic; I follow the lines down the aisles, and keep my distance from the other patrons.. but looking around the other day I realized that I was alone. I was the only one wearing a mask, or paying attention to the arrows on the floor… I watched people stopping to hug friends like somehow we are immune to this fast moving, fast adapting virus.. like we have already made it out the other side..

I feel so alone.

I think to myself constantly ‘Am I the one that’s wrong? Am I overreacting?’, and then I remind myself that my CF mom gut has yet to be wrong. I can call a bug before he even coughs, hell, I can damn near name the bug before the swab comes back. The conversations in my head are those that I wish I had someone to bounce these thoughts off of, but always coming back to the fact that Seamus is not as healthy as he is due to luck. It’s been a long hard road, with healthy boundaries, being aware of threats, and being fucking diligent. Finding the balance between having a fairly ‘normal’ life, but also being honest about our situation; one bad bug, or bout of whooping cough or pneumonia, will knock us down a peg– that is at the front of my mind every single day.

And because, why the hell not throw another log on the fire, due to all of the worlds happenings, and my inability to control ANY of it, has my mental state turned upside down, and me grasping for anything I can control as I spiral down into what Anne of Green Gables would call ‘the depths of despair’. My roller coaster emotions have me moving rapidly between depressed days spent in bed, to manic days spent ripping apart an old motor home I bought us in hopes that putting it back together will help me feel like I somehow am also being put back together…

But up or down, every night I crawl into bed wishing that when I wake the next day that this nightmare will be over, and every morning I realize that there is no end in sight, and I am exhausted.

Sending light, love and strength to those that need it in this desperate time.

I can’t breathe…

I wasn’t feeling scared– not really. I mean, we live in a constant state of hand-washing/bleaching/being aware of our surroundings and how we are feeling. Seamus’ lives with cystic fibrosis – everything down to the common cold is a threat to us- so I wasn’t feeling scared, but the fear is creeping up on me, growing my anxiety, filling my head and my heart with dark thoughts..

At 11 months old Seamus contracted Humanmetapneumovirus – from the time he was diagnosed at 15 days old, until about 6 months we flew back and forth from Vancouver to home, for genetic tests, and a myriad of other complications that arose as he grew older. He started on liver medications and multivitamins right away, but once we had some answers things seemed to settle down, for awhile. He was sick on and off, coughed more than usual, but it wasn’t until Nov/Dec of 2011 when I realized that we weren’t going to get away with ‘healthy diet and exercise and he should be fine’, as the doctors first thought.

We came home after our first admit, right before Seamus turned one with a strict regimen of medications and therapies, and that was it – I knew this was going to be our life forever, and all of a sudden cystic fibrosis was real, and it ruled our lives…

I lived in constant fear of doing something wrong and killing my child. Live. I live, even now, in constant fear that I am going to make a mistake and my child’s health will suffer.. he will suffer – and I will lose him. Nothing, no amount of therapy or medications (for me) take this feeling away… this constant notion of impending doom.

Our city has bought up every roll of toilet paper, every bottle of soap, sanitizer and bleach- and though in my rational mind I’m thinking ‘how silly’ my heart is beating out of my chest; I’m so mad I told a lady with toilet paper (the last pack) in her cart to fuck off.. I am so mad because there are vulnerable people here- not just us, other immunocompromised people, and elders, who now don’t have access to the things that they need to help them stay healthy, to help them ward off death. Seriously.

Tensions are rising as the cases of Influenza A rise in our community, and the coronavirus COVID-19 is labeled a pandemic, there has been no cases of it here yet – thank dog, but I know it’s coming, and for some I know they’re shrugging their shoulders, washing their hands, and wishing for the best… I can’t sleep, I obsess every minute of every day, I check his forehead through the night, I listen to his cough, I watch for any sign of irregularities, I can’t breathe.

Spring break is next week, between my village and I we can isolate him for those two weeks, hopefully after that we will have some news, and some ideas on how to move forward and protect Seamus.

I. Cant. Breathe.

Chapter ##

#BellLetsTalk – #MentalHealth:

I think I always knew I wasn’t like all the other kids- or, I guess how they appeared to be. I never fit in anywhere, I rarely connected to people, but when I did it was big, HUGE even – and when I lost them my world came apart at the seams. I constantly felt like I had no control over the things in my life which lead me to feel so anxious that screaming and crying, and treating the people I loved awfully felt like the only way to show them how I was feeling. Every time my sister and I would go to school and come home, only to find that it wasn’t the home we had left this morning I felt less in control, less… like myself; my mom would sit in the living room with the 5 disc changer turned on, ready for us to pick the albums that would christen this new home, and this next chapter in our lives, and we would just, move forward.

We moved around, a lot. And no matter where we were, nothing felt like home. Nothing felt…concrete. This may very well have nothing to do with my lists of diagnoses, I guess there is no real way to know, but when I look back I can recall those feelings of instability, and how alone it really made me feel. In my late teens and early 20s those feeling were dumbed down with excessive work followed by an even more excessive amount of alcohol.

If I wasn’t working we were at the bar, or at the beach; in someones garage indulging in booze and laughter- and it wasn’t until I started therapy many, many years and breakdowns later, that I realized that my erratic behavior was showing all the signs of me struggling with my mental health, but at the time I didn’t see a problem – I didn’t really see anything.

Fast forward – February 2011 – after a series of unstable, and unhealthy relationships, I was given the news that my new born baby, my perfect son had #cysticfibrosis, and once again, my world fell apart. But this time around there was nothing strong enough to help me battle the emotions and struggles that came along with his diagnosis.

I struggled silently for years. I had to be strong for Seamus. I learned everything there was to know about CF, we attended doctors appointments, clinic appointments, hospitalizations – and every time he would fall sick, or we had to add a medication/treatment to his routine I felt that very familiar feeling of instability and loneliness- the demon in me that had sat dormant (or so I thought) for so long had been awakened and I had no idea how to deal. So, I did what I was taught, what I knew how to do – I distracted myself. I started writing, we started raising money for CF, I tried to numb myself with alcohol and food but nothing worked- nothing took away my pain – as hard as I tried, the darkness had set in and I was powerless.

When I was high I was so high. I would go for days on little to no sleep, accomplishing everything on my to-do list with time to spare- I would make big plans, and stupid, unsafe personal decisions. When Seamus was home I was able to get my shit together – as much as someone who was drowning- he would eat a balanced meal, I was usually post binge session when he came home, so I opted out of dinner, nonchalantly telling him I would make myself something a bit later. Our nights together we would escape into stories and movies, and in those moments I felt safe, and loved, and that I could make it through this- that this had to be just a bad patch – and then he would leave, and the only thing I was left with was my own thoughts…

My desperate need for stability and a sense of control steered me into an unhealthy relationship laced with harsh words and even harsher actions – and though my rational brain kept screaming at me to get out, my loneliness and fear of abandonment, my emotional brain wouldn’t, couldn’t let go. So I stayed. I stayed and I continued to drown – I moved forward in a state of fog for so long, barely hanging on, until Seamus was called for a last minute opening in a surgery he was set for – nothing huge, tonsils and adenoids, and off to Vancouver we went. A round of pre-surgery antibiotics, a quick and successful surgery later we were set to go home after about 20 days – and then the fever came, and the infection followed- not as scary as some of the monsters we have faced, but enough for the team to want us to stay close until they were confident we were in the clear and safe to travel the 2000kms home.

When departure day came I was so ready to come home. There is a lot of dark and quiet hours in the hospital, and I was ready to get back to the job I had loved, and given everything to for the previous two and a half years. I hopped on our local website to see what had been going on since we were gone, to brush up; and the banner read ‘_____ on the Morning Mess’ – not ‘____ and Amy’ as it had stated for two years previous – I was called into a meeting the day after arriving home, to find out that the company could no longer accommodate my needs a special needs mom, the company and I were ‘ going in different directions’.

What came next was a deluge of all the emotions I had been ignoring for so long – I stopped sleeping, I starved myself for weeks, binged for hours- past the point of sickness; the more I tried to gain control of my life, the more paralyzed I became- and the worse everything got. Of all the times I thought I had reached ‘rock bottom’ in my life, nothing was as terrifying as where I found myself when I could finally see…

This is where it ends for now, I have opened my heart more in writing this than I have ever before. Letting people see you at your worst, it’s hard, trying to convince yourself that they will stay, and love you through it- is even harder. There is more to this story, to my story, and in time I hope to be able to write and share those words, but the most important part is that I made it through a time when I thought that not surviving was the only way out of the fog. I am still here. I am still here,

And again…

It’s that time of year again (when is it never that time though..?); it’s the countdown to May– which if you have read any of my previous blogs, you know is cystic fibrosis awareness month. When we started raising awareness and funds for CF we used to do it in the month of May, and then it was April and May, so on and so forth. In 2018 I started in August to prepare for a Trek to Machu Picchu in support of CF the following May – I raised almost $5000 and the trek raised almost $500,000; and now this year, or last year I guess, we started in September in preparation of a Trek in Iceland in June 2020.

Sounds incredible, doesn’t it? It is, I promise, it’s…life changing.

I have never quite been able to put into words the effect that trekking in Peru had on me; it somehow managed to break me down, and then build me back up in a tornado comprised of strangers, and tears. In the months leading up to departure I begged for donations, walked door to door, pushing my pride aside and sharing our CF Story with anyone who would listen in hopes of finding sympathetic ears and generous hearts- and with the never failing support of my sister, and my CFY team we exceeded my fundraising goal; and, *phew* the hard part was over… or so I thought.

I walked stairs, and I climbed hills, I did small cardio work outs at home in hopes to get my body used to moving again, it had been so long. The thought of trekking 5 days through the mountains to the Inca trail, up another 10 hours, down another two into the ancient city made my queasy. Honestly, even just writing this to you now, I feel a bit ill.

I had thrown my name in the hat on a whim, at a boozy breakfast in Watson Lake, I was feeling bold when the email to join came in, and I just… did it- and then, as most things do, it slipped my overtired brain and it wasn’t until I received a follow up email screaming ‘YOU’VE BEEN CHOSEN TO TREK TO MACHU PICCHU IN THE 1ST INTERNATIONAL WALK TO MAKE CF HISTORY’.. my mouth filled with saliva and I choked back tears; my first thought was to take it back, send a quick email stating that my situation had changed and I was unable. But instead, I filled out the form, sent in the first part of the deposit and convinced myself that I had 10 months – to train, to raise the money, to mentally prepare myself to leave the country, to leave my baby for two weeks, to actually do something for myself..

I left in the very early hours of the morning, having stayed up all night with friends trying to ease my anxious heart, and distract myself of the reality that had been such a long time coming that seemed to have shown up overnight. We were split into three groups, with around 20 people in each group – I had been placed into group 1 without a familiar face to be found. I met fellow CF mom and trekker Kelly in LA (I think), and we shared the rest of the journey into Cusco, and then went our separate ways; only to have a chance meeting at a small Irish pub (the highest Irish owned pub in the world) on one of the few days we had to acclimatize by wandering the city and getting to know one another.

Walking in Cusco the sun was hot, the smells were amazing, and you could just feel the history. Our guide was kind and knowledgeable, we learned the stories, ate the strange food, and shared stories with our group, bonding long before we hit the trails. The days were long, and the sun seemed close enough to touch – every single step I took the first day I swore I wouldn’t make it past night one – and as I got to our camping spot that first evening accompanied by Dr.Calente (the hot doctor) and Fernando, I realized I had trailed the rest of the group by at least an hour. Then I realized, I made it – I didn’t in fact die, though there were times I wish I had. We ate together that night, the food being better than I remembered, perhaps it was the exhaustion, the bleeding toes, or just the relief that I didn’t have to be carried – but I had never felt so grateful. The following days I found myself looking back, and hanging onto that feeling I had had the first night. One step at a time, one foot in front of the other, just keep going- and I did. I walked every step, up every mountain, down every valley, and at the end, we made it – together.

A fellow trekker and I brought up the rear for most of the trip, leaning on each other, crying into the others embrace while exchanging heart felt reminders of how far we have come. As we got to the final set of steps that would lead us to the lookout where we would catch our first glimpse of the incredible city of Machu Picchu we had caught up to the group, and with a quick speech from Nep, our guide, each one of our trekking teammates put their poles up- allowing Chantal and I to walk under, and up the stairs leading our group to the Sun Gate.

That moment was one for the books. I have never felt more connected to a person, or people, I have never felt more proud.

And the rest, as they say is history.

In just 5 months I will trek again, in Iceland this time, with 3 other members of our CFY team- this year we need to raise more, we need to work harder, train harder, and honestly, I am not sure if I am ready. My heart still feels raw, my soul feels tired..

This life, these opportunities, they are spectacular – they are beyond anything I could have imagined.. I don’t take them for granted; but I am tired. Hoping to find some inspiration soon..

Hoping you’re all happy, healthy and loved,

Me.

I’m a maniac, maniac

It wasn’t until I was driving in our end of day 3pm traffic, with a car load of freshly washed clothes, and a kid with a McDonalds bag on his lap that I realized I couldn’t exactly nail down the last time I ate.

Marissa was over last Thursday- and I cooked a roast, and I think the following day I had some of the leftover roast dipped in cheese sauce..at some point over the weekend I had the last remaining bites of kraft dinner, cold, out of the pot..

I have been, as Anne of Green Gables put it, been in ‘the depths of despair’ for weeks now. A depressive episode so deep that I resorted back to spending every minute I wasn’t working or hanging with the kiddo- in my bed, reruns of Gilmore girls on the tv, under my weighted blanket- sleeping on and off, just trying to shut my brain off- begging for a minutes peace.

But, they ebb and flow, like everything in life- I learned going through counseling, and therapy, and group therapy how better to track these moods in hopes that I can focus on the fact that even though, in the thick of it, it feels like the cloud will never lift, I can count on a tiny break, a small sliver of sunlight that eventually breaks through… and then the mania sets in.

It’s an ongoing rollercoaster of managing my depression, BPD, and mess of other comorbidities- and remembering that no matter the state of my messed up brain, that this life is mine, and that whatever comes my way I can, and will tackle it- because there is a (not so) tiny soul that’s needs his momma; and at the end of any day, that’s all that matters.

I stayed up this morning after walking seamus to the bus- which may not seem strange, but I didn’t have to work today, so, as per usual, I crawled back into my bed, and within an hour I knew, that finally, this episode was over- the heaviness in my chest felt.. less, but I felt antsy- so I got up, did the dishes, bleached the kitchen, changed the bedding, sorted the laundry, fed the dogs, loaded up the car, went to the laundromat, started the laundry, picked up seamus, brought him to his appointment, went to the bank, paid my rent, changed over the laundry, and stopped in and seen two friends, had a good chat- each ending in a hug- and it hit me; I knew. The mania has started.

For a long time I thought that these manic episodes were just ‘good days’- like everyone had. Until a few months into therapy, I realized that barely sleeping, never feeling tired, or hungry, needing to be busy every single waking second (which frankly, I love- so much shit gets done) wasn’t, isn’t healthy. And isn’t just a ‘good day’. The truth is, it hasn’t been until the last few months, that I ever really knew what a ‘good day’ was. There was up, and there was down. No in between, no balance.

I know the mania won’t last, just like the depression- I get up, and I put in the time, I do the work, I take the meds, I listen to my body, and my heart- I treat myself with a love and an empathy that wasn’t possible up until now; I am grateful.

It’s hard not to feel judged- to ignore the stigma that is attached to mental illness. It’s hard not to feel like it’s a tool that will be used against me- like it makes me less of a person, less of a mom…

Every day I wake up, and I do the fucking work- and I will continue to do the work, and even though I feel isolated and misunderstood, I know that’s just my borderline brain; and it’s not to be trusted. I have learned to listen to my heart, because it, no matter what, never lies to you❤️

My reasons💜💜💜💜💜💜

This little life of mine, I’m going to let it shine❤️

It’s been awhile.. Things are.. amazing, and scary, and challenging, and rewarding.

Sometimes I feel like.. I’m thirty one years old– ALMOST 32- and I am still finding my fucking way- barely.

But sometimes… like this past week, I’m… flying- for lack of a better term. I’ve been working my ass off, my days at the facilities, most of my free nights at the bar- putting away every single ‘spare’ penny I have, trying to give Seamus this incredible birthday gift (more to come)!

9 in February. NINE!!!

He’s incredible- I know all parents say that; but he’s incredible.

He’s just this amazing, smart, kind and sensitive kid- and he’s just… he’s hurting so bad, and I feel so lost. And part of me feels so awful; because our life, this life that I have been working so fucking hard at, is finally coming together! We can get groceries and gas in the same day! And though I still shop on a tight budget (saving all the pennys for the amazing bday gift), seeing all the hours, and brain power I have been putting in starting to pay off… is more than I could ever ask for. But my kid is struggling so hard. And I feel guilty. His anxiety- if genetic, not only comes from me- but obviously partially it does! And I hate cystic fibrosis- more now than ever! Because I can fix the coughs and colds; we can stay home and do extra treatments, wash our hands, take the meds- we can do that! But the anxiety… there is no one fix- no quick fix I KNOW- I have been there, I am still there. It doesn’t go away, you just learn to cope, you learn (hopefully) healthy ways to cope- but he’s eight. He’s only eight, and I know better than anyone, there isn’t something I can say to make him feel.. more secure, more confident, less anxious..

I see him trying to navigate this new, scary world, and I feel like someone has tied my hands behind my back.

I talk to him, openly and honestly about my struggles, about the ways of coping I learned through therapy, and DBT, and working with my psychiatrist- I remind him every day how smart, and amazing, polite and kind he is. I remind him that we have survived 100% of days up to now- and that no matter what, I am on his team. That no matter what happens, he’s got me- and that I am not going anywhere. But he worries, and I know that that doesn’t go away with a few words. I know that it takes years, of work, real work, to get to the root of the issues, the anxieties, and even then- it’s a lifetime of work to keep them from ruining your life- and I know this because they almost had me. They almost took me from this world, from my life, from his life- but I didn’t give up, and I didn’t give in, and I need to know that he was my strength- and now, finally, I can be his.

But he’s eight; almost nine. And he’s just a kid, and I want him to be a kid as long as possible, but I see it, in his eyes, in his face, that he is struggling, and I want him to know that I am not going anywhere- that I am here, forever, for always. But he’s eight. So instead I’ll write it here, and I’ll save it for later. And when the time comes, I’ll tell him how he saved me- and it’s my turn now, to save him in return.

God. This is never easy. Ever. Even now, when things are good- on the verge of great- I am drowning, still. I take showers so I can cry without him knowing. I work myself to the bone on days I don’t have him so I don’t have to think about it- or anything. I don’t have a spare minute where I am not working, one job or another, or doing laundry, or doing anything that keeps me from stopping and thinking, and losing it.. again.

I’m still struggling. I don’t want this life for Seamus. I just want him to be ok. Better than ok. I want him to be as great as I know he can be.

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

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💜