Highs and Lows

It has been easy to share photographs of my kids being all cute and such at their uncle’s wedding, or our seemingly spastic tourist moments while frantically trying to cover as much of the Canadian east coast in three days before the wedding.

What isn’t easy to share are the ‘real life’ things - the new normal and the reality we live.

Just before our travels took us to New Brunswick, we made the difficult decision to move Mom into a personal care facility. It was reassuring to know that she would be cared for well in our absence.

Shortly after we decided that this was the path we must take in our care for Mom, my brother (the groom) broke his jaw. I do believe that injury, just before his wedding, created a distraction for us all. We worried about something that we could fix instead of focusing on how we could no longer strong-arm MSA into fitting into our lives.

And so, we flew to the other side of the country and celebrated love well, while our matriarch remained in the care of others. We cried tears of sorrow too of course – hoping we shared the joy of a new marriage commitment and the sadness of missing someone important at the same time with grace and honour. Those are not always easy things to hold in tension with the other.

Then we came home. And mom wasn’t in her big brown chair at the farm, because that is now in her room in town. The reality of MSA, of any degenerative disease really, is hard to ignore when it literally takes things away. 

I have known this move was to happen for a few months now – we had discussed it as a family, through tears and wrestling with the guilt that we should be able to do more but knowing that this is what we need to do, for the wellness of all family members. It doesn’t lessen the ache, though, of knowing the code to enter the facility well and to her room where she remains in the same position until someone moves her body for her.

I’ve struggled in sharing about mom lately, especially in photographs (but that is perhaps another lengthy conversation for another time). I’ve also struggled to name or pinpoint why I hesitate to share, why I’ve become a social media ‘lurker’ for the most part these days. The closest I can come to explaining this is:

1. It’s hard to share details of something that greatly affects you but is also someone else’s story. To determine the boundary in what is mine to share publicly and what is not is no easy feat. We, as a family, are so interconnected in this situation and when the center of it is a woman who no longer has the ability to communicate easily with us, it’s difficult to assess and define that boundary clearly.
2. This disease is horrible and my mom is not presently the active, vibrant woman she will always be in my heart. The memories of that woman are getting a bit foggy and have faded and I know that Mom as she is now, as a result of the atrophying, is not ‘right’. I want to preserve the vibrancy and the physical strength of my mom – sharing images of her in a wheelchair or a chair aren’t indicators of that pre-MSA mom – and I want to avoid pity. People also get funny around mom (or others with degenerative diseases). It breaks my heart to see pity in the faces of others, directed to mom while in her chair, or to hear people speak loudly and sometimes patronizingly to her. It’s heartbreaking to experience that and so I attempt to prevent those opportunities, right or wrong.

We share our highs often because they are easy. And they should be. New babies, vacations to beautiful locations, delicious coffee, friends that show up in our lives and children being goofy (or simply not behaving like tiny terrorists)… those are our highs and they are beautiful to share and to celebrate. Our ‘lows’ - or the hard, tricky, painful things - aren’t always so easy to share.

The thing I'm learning is that my mom is surrounded by people that love her and my struggles are rooted in unfounded and unnecessary fear. And just like that incredible community of people surrounding Mom, I also have that community. And sharing is almost always worth the risk.

East Coast Adventure

My younger brother (the middle child of our family) recently married the sweetest girl you can find, in her home province of New Brunswick. I, of course, was thrilled to have an excuse to go explore some of eastern Canada.

With my camera in my backpack and what I hoped was not excessively packed luggage, we set off with unrealistic expectations for our time there while 'vacationing' with small children. We saw a few tourist-y things and I photographed less than I thought - almost only at Peggy's Cove as I tried to keep up with my son and my youngest brother - but I can say that it is a beautiful part of the world that contains some of the friendliest people. 

Below are a few photos that prove we visited Nova Scotia, Prince Edward Island and New Brunswick.

SIX years // a letter to my son

Six years ago, I sat in a hospital bed with monitors and IV's attached to me, while we waited... There might have been TLC's 'Cake Boss' on repeat and I'm sure I had been texting your granny with the few updates we had to give. 

Six years ago, I didn't know that in a few hours, our doctor was going to be called in because your little body was being stressed with every contraction I had. And then shortly after that, I would be prepped for surgery. 

Six years ago, I was wheeled into a white sterile room and it felt like a dream. I remember feeling every contraction and fighting each one, knowing that every time my body tried to do what God had orchestrated it to do perfectly on its own, you were being hurt. I remember crying a lot - bouncing back and forth between fear of major surgery and knowing I would do anything for you, to make sure you are safe.

Six years ago, you were born. It's all very 'blurry', your birth. There are so many details I can't remember, because I was scared. But I remember being so VERY happy when I met you. When I saw those skinny little baby limbs and heard that cry. You were ours and you were healthy and you were perfect.

I had to wait to see you again, after they took to you be checked out. Your dad brought you down to where I was recovering and I remember my hands almost twitching I wanted to hold you so badly. I didn't get to touch you in the OR - I saw your little face, but I didn't get to touch you, to feel your skin and know you were not just a dream. It was almost too much to take, waiting for you to be in my arms.

Six years ago, I became a mom to a little boy with red hair, who didn't like to sleep unless he was swinging (at a speed which seemed almost violently fast) and had his soother in. Six years ago, I couldn't have fathomed how many times I'd want to pull my hair out at your stubbornness or probably lost years off of my life when you climbed farm equipment I thought you were too young to do. My boy, you have brought great joy to our lives. In a year that brought a scary diagnosis of an unknown disease, it also brought us you. 

Six years ago, I first began to love you. I haven't - WE haven't - stopped loving you. My sweet, sweet boy... I pray so many things for you, for who you will grow to be and who you will remain.   Mostly I pray that you will always know that we love you, that we would do anything for you. And that you will know a love deeper still, a perfect love that we try to model to you but fail so often at. Hudson, there's so much we hope for, for you... but nothing more than that you find your hope for all things securely in Jesus. Keep singing about the love of Jesus, my boy. Hold on to that love tightly.

Mama loves you better than the whole world. Happy birthday bud.

Embrace the mess and kiss the wave

Yesterday was my 32nd birthday.

I've been attempting to reflect on my last 365 days lately and it's been difficult. I think it's because the last 365 days have just been difficult. There's been so many changes, shifts, endings and beginnings that trying to make sense of it feels a little like trying to undo a big knotted ball of string - you think you've figured it out and then the knot is back there again, seemingly worse than before.

Around my birthday last year, I named one of my biggest fears. No, not birds, although that is a pretty big one. After all these years of 'losing' mom to MSA and the shifts in life that come with young children, I realized my fear was of people leaving me, of being left behind, alone. I had placed my security in relationships and I was failing at keeping them. Shortly before Christmas, this fear began to have negative consequences and physical side effects on my life.

So while friendships ebbed and flowed (as they naturally do), I worried that it was my fault or that there was something inherently wrong with me that had people looking for something better, 'leaving me' by that perspective. I had let my fear of (ultimately) being alone grow unchecked to the point where I lost sleep, experienced panic attacks almost any time I visited with friends, felt my emotions become rollercoaster-like and I noticed myself disengaging from my family regularly. In naming my fear, I had no choice but to see the ramifications of that fear on my life... and the ones surrounding me. 

I decided that I had to dig into this hard place, full of fear, if I wanted to be free of it. I started listening to podcasts and sermons on fear and anxiety, I read Brené Brown and saw a counsellor. I cried a lot and I pulled back - from relationships/situations that I began to recognize as triggers, and from social media for various periods of time. I read often, sometimes as an 'unhealthy' coping mechanism. I made decisions to better my mental health and spiritual life, and while some were easier to implement than I thought, there are others that I still struggle with.

It was within this past year that I had someone from our community (in the health care industry) describe mom as palliative to my face. When that word was used, it was factual and correct but it also took me by surprise and felt like a punch to the gut. I recall it taking all my effort not to cry right then and there, I don't remember if I succeeded. Not long after that, I was at a retreat weekend that was structured enough to ensure we were fed and well-caffeinated but open enough for creating at our own leisure, together or individually. As a group one evening, we were asked questions, our responses written on little pieces of paper and then we guessed which answer belonged to each person. I remember laughing so much with these women in that sacred space of sharing, the same space where we created and witnessed others create. We shared our mantras/words/themes for the year and I claimed 'embrace the mess' as my theme. Sure, on one hand it meant embracing the physical mess I regularly feel caught in while teaching my littles to clean up after themselves (spoiler alert: it's not going well). But more importantly, it meant embracing, acknowledging and not shying away from the mess that comes with grief and the anxiety I was learning to address. I spoke the words "My mom is dying" out loud and in that public space, and it felt just as surprising and true as labelling her palliative.

In December 2016, I began to acknowledge that having no control over how long or how much of my mom I could keep, had shattered me. Where I once felt grounding and security in a relationship, I now felt disconnected and alone. I had to acknowledge that while my mom is still with us physically, she no longer could fulfill the many roles a mother figure embodies. I needed my mom to be my sounding board on parenting, marriage, friends, and my female ally in a family predominantly male, but that wasn't happening. It is difficult to feel those needs are met when her voice is gone and our conversations are one-sided - me sharing silly anecdotes or my concerns with her while we look into each others eyes and I try desperately to interpret what she is trying to tell me. It is difficult to glean wisdom and advice from someone when you are limited by yes or no questions - "Close your eyes if you are saying yes, Mom". One year later, I will admit to struggling still with feeling alone and disconnected. Experiencing continuous loss and grief will do that to anyone, I suppose.

This past year was about acknowledgment of fears, the loss of denial and finding God in all of it. I don't know what 33 will bring - I expect hard things that will make me feel a little more shattered and more than likely, even messier. I can no longer deny that my mom is dying. There are times still when I'm frustrated by the question "How is your mom doing?" and the response I want to give is "She is dying - losing function and completely reliant on her family for everything." Of course, saying that would make others feel uncomfortable. Partially because I don't always want to say it kindly while I'm reaching for my sandwich meat at the deli counter of my grocery store, but mostly because I would be removing any remaining denial for them, of how far along this disease has progressed. It was hard for me to hear someone else use the term palliative while describing mom, but earlier that year I had begun to acknowledge that, to some degree. My time with a counsellor, sifting through the pain and searching for the Truth within it, had prepared me for that statement. My decision to stop distracting myself and deal with my issues by taking time to be alone with God, reminding myself of truth through Bible verses that give me comfort, has caused a shift recently in my response to my fears and my mom's disease.

There is a Charles Spurgeon quote - I have learned to kiss the wave that throws me against the Rock of Ages - that perhaps embodies my year's theme of 'embrace the mess' better than those three words. Life this year left me feeling untethered, disconnected. I've described it before to friends as though I have nothing to cling to that is safe and secure in the middle of an open body of water, feeling as though I'm drowning by each new wave of grief I experience and losing the strength to tread water at times. The truth is, every wave I've felt has been pushing me towards God, towards the security I can only find in Him, and I have found myself clinging to the Rock of Ages only by embracing the movement of these waves instead of fighting them this year.

The waves keep coming - I don't think they ever stop while we live on this earth - but I'll 'kiss the wave' and embrace my mess, if it reminds me that Jesus is called Immanuel, "God with us". 

Portraits in our bathroom // part 1

Our bathroom may have the best light in our house for portraits of the kids. Thankfully close-up images and shallow depth of fields (mostly) hide the tell-tale signs of farm water issues 😉 

Maybe we all need an identity crisis

When I reflect on my almost 32 years, I cannot help but see the changes to my identity that have occurred as I have added new titles, names, or professions to my repertoire.

My first identity was 'Ben and Marg Dueck’s daughter' or 'oldest child'. Then, while in school, I discovered hobbies, activities or talents that were added to my identity list: reader, artist, runner, piano student, youth group/church kid, friend… to name a few. Some of those identities stuck around beyond high school and of those, most became entrenched in how I viewed myself in early adulthood.

I started dating a very tall young man in my early twenties, who eventually helped me add 'wife' and 'Hudson & Gemma’s mom' to my list. While I have navigated being a girlfriend/wife/mom, my creative pursuits and hobbies increased and decreased in significance with demands of those roles. Parts of my identity had to be let go of for a time – sometimes with me not knowing if I’d ever pick up those pieces again, or when I would return to that 'me' if it was a temporary season.

Recently, I’ve rediscovered books that don’t rhyme and are found outside of the kid’s area of Chapters. I’ve started running (and stopped and started again) to help manage my anxiety. I have had periods of time where my time is filled photographing my family (and/or other families), and other times when my notebook, pencil or brush pens are never far from my hand. I’ve put acrylic paint on canvases while my children use watercolour on the other half of our dining table and I’ve helped glue/tape/write/draw some spectacular mixed media projects with my littles. Some of these life-giving activities look the same as they did before, but it has been necessary to alter most to fit within my current life stage. There have been days when I haven’t been able to claim any identity besides ‘dish-washer’, ‘toy-picker-upper’ or ‘laundry-do-er’. I have had days when I feel like I’ve mastered those titles and others that I fail epically at them. More often than I like, there are days when my mood is incredibly grumpy in response to these thankless jobs, when I fail to acknowledge the hidden blessings in the life of a stay-at-home-mom.

'Friend' is one role that I have always needed in my life. I have found solidarity in it when nights with babies were sleepless, support when life as a farmwife feels lonely, and wisdom, encouragement and prayers when the weight of a life season feels too much. It is in this role that I laugh until I cry, love and feel loved.  It is also in this role that I have experienced hurt that bruises or, in some cases, breaks my heart. There are relationships that dissolve slowly and amicably, sometimes ones that can be difficult but maintain equilibrium if kept at surface depth and some that result in hurt so profound, it is life-altering.

In the same sense, my identity as daughter doesn't feel as straight forward now that mom has been diagnosed with a terminal disease. I will forever be ‘Ben and Marg’s daughter’ but because of MSA, I know that identity will one day not be referred to in present tense. In fact, there are some aspects of that identity that I have felt shift to past tense already. For most of my life, my mom was the one who took care of me but since the diagnosis, the roles have changed so that I am the one extending care instead of receiving it. While in the young baby years and even now in the young children years, that is a very disorienting change to experience. While I will forever be a daughter, sometimes it feels like in 'real life' that role of being mothered isn't mine so much anymore.

As different roles have come together to define who I am and I've experienced the 'ebb and flow' of many of those identities in recent years, there have been anxieties and fears to confront in the process. I've done some HARD work and continue to do the hard work in speaking truth into those fears, anxieties and issues. Becoming a mom and having a small human require so much of me 24-7 made it easy to channel everything towards them and lose sight of my other roles. When you come up for air, from those tiny baby years (and I'm not that far out of them so my words can't hold a lot of weight), it's hard to reconcile who you were pre-baby with who you are now, post-baby. It's not just our bodies that change through pregnancy and childbirth, there's a shift in priorities and values that can be an obstacle in re-claiming parts of ourselves. When grief is added to your identity, it feels as life-changing and confusing. My pre-MSA/grief identity is one that I wish for so desperately some days, but this current identity... it is bittersweet at the best of times, character-refining and just as heartbreakingly beautiful as those early days with a tiny newborn, running on a few hours of sleep and a whole lot of love.

Through the past year, I've been confronted with the truth that the only identity that matters, the only identity that never changes and is constant through every season of my life is I belong to God. My heart will only continued to be battered, bruised and broken if I place my value, worth and identity in being a mom, wife, photographer, handletter-er, runner, daughter, friend, sister, or any other role I find myself in on this earth. These things are not eternal - they do not last and they are not reliable. These things, relationships or abilities will change and reach an ending. They will never hold up to the weight of my expectations and, as a result, let me down.

1 Peter 1:3-9 has been encouraging to me while I have wrestled with my identity - the fears and insecurities that have shown themselves through grief and this identity crisis have been difficult to face. To admit that I had been trying to find my identity in relationships with others or in talents I have been given or in duties that I preform, instead of rooted in Christ and who He says I am... it is humbling. It takes constant effort to refocus where I find my identity and sometimes I feel like I take more steps backwards than forward. The process is messy, compounded or complicated by grief and young children and marriage and everything else I encounter during my years here on earth. But my God is patient, He loves me (and my mess) and I belong to Him.

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“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith - more precious than gold that perishes though it is tested by fire - may be found to result in praise and glory and honour at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.”

— 1 Peter 1:3-9 ESV

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Pain is a microphone

I was reminded recently of a chapter (within a book) by Levi Lusko, which is more than likely what prompted me to begin transparently sharing on my Instagram account about grief. His book Through the eyes of a lion has so many nuggets of wisdom and phrases that I have audibly said "YES!!!" to while I was reading it. The subtitle on the book says "Facing impossible pain, finding incredible power" and it has been one of the most impactful books I've read while experiencing ambiguous grief. I'm a 'highlighter' in my books and this book has all the highlighting... it's creased, dog-eared, been spilled on and visibly well-loved.

Chapter eight in his book is titled "Pain is a microphone" and within that is a quote from C.S. Lewis's book The Problem of Pain - "God whispers to us in our pleasures, speaks in our conscience, but shouts in our pain; it is His megaphone to rouse a deaf world." While I am experiencing my own grief, trying to make sense of the intense emotions, gut-reactions, coping mechanisms, triggers and more, I feel compelled to share about the one part of my life that I am fiercely protective of. That is quite the thing to wrestle with. 

Sharing about my mom and how this disease has taken so much from her/me/our friends and family... its hard. It's emotion-filled and heartbreaking. I find myself trying to document as much as possible with my camera but unable to share a huge majority of the images. Because those images are vulnerable, tender pieces of my heart, breaking and bursting simultaneously. But then I carefully select an image and I use the caption to string a bunch of words together to be transparent and honest about part of this grief struggle. And the response... Grief truly IS a microphone.

It is after I share, after I show some of my cracks and broken pieces, allowing others to see my pain, my heart and our 'normal', that I find myself reading responses (publicly or privately) of others sharing their own pain or (what still feels a bit strange to me) their thankfulness for my transparency. I often hesitate before I share, questioning if I'm oversharing and anxious that my silly words will be received well. But there is almost always a compulsion to share in spite of those insecurities - almost as if I HAVE to share these things, that 'this' cannot be contained or selfishly kept to myself.

A few days ago, I shared with a close friend that I had begun this new website/blog and the direction I feel myself being pulled with it. She listened to me ramble and be insecure about this space. In the past few years, I've often received comments along the lines of how my family is inspiring/an inspiration to others, and we were discussing how uncomfortable that usually makes me feel. There's much of caring for someone with Multiple System Atrophy that I don't feel we have had a choice in. There's a lot of this experience for our family that has felt messy, ugly or hard, and those things don't necessarily get placed in the spotlight. I think it's not uncommon for most of us to try to hide those things from public consumption - we routinely share our life highlights, while avoiding the rest. I see behind the curtain, so to speak, and I feel as though there is no alternative to how we respond to this disease in light of our love for mom and our faith. I don't like being in the spotlight myself and I prefer to people-watch instead of being the one watched. I shared this with her and she challenged me to be more gracious with how others find inspiration in our journey. She pushed me to share and use my reluctant voice.

Following that conversation, I received a message from a woman in my hometown that very same day, encouraging me and addressing aspects I was concerned about when putting my tender heart on display. I feel very inadequate in this journey to share grief and God's sovereignty through it all. I worry my words will be slanted towards despair when things feel overwhelming heavy and hard, instead of pointing to the hope we have in Him and cling to in the process. My knowledge of 'good writing' is limited to whatever has come through osmosis while reading, so I am self-conscious of how legitimate writers I know view my words. I don't ever want to sugarcoat how difficult it is to experience this sort of goodbye to a loved one and I refuse to pretend I don't cry regularly OR apologize for my tears in any way because there is absolutely NOTHING to apologize for. I pray often that my tears and pain will somehow be redeemed by God, to glorify Him.

Levi Lusko writes in his book, "He's turning your mess into a message. He's turning your pain into a platform. He's turning your trial into your testimony and the trash that has come into your life into triumph!" I hope that in spite of me, the words on this website and in my Instagram captions do just that. Written within that short Facebook message I received, were these encouraging words: "Thank you for your strength and courage to break yourself open like that - it's raw, authentic, and necessary. We all learn so much from each other's 'situations' - pain, life lessons, and the list goes on..."

So this is me breaking myself open, to let pain be my microphone, so that God can use our suffering to bless others. 

The beginning of endings

Most books that top my favorites list haven't been written with a linear timeline. They jump from past to present and back again, in no particular order. For some, it can be very confusing but for me, it's fascinating to see fragments of a story and then finally piece it all together in the end. I suppose this is how I see my life. One day I'll reflect on how these struggles, endings and beginnings piece together, all of it messy and disorienting in the process but beautifully connected and complete when it's done.

It seems only appropriate that I include the beginning of our experience with Multiple System Atrophy – before the walkers, wheelchairs, hydraulic lift chairs, neck braces and many other medical aids that come with palliative care - after some present day posts.

This is our beginning of endings.

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My mom was active and strong and I always believed that she would be one of those old ladies that just never really ‘got old’. She would be that Granny I couldn’t keep up with – she would be running marathons and triathalons and taking my babies on all sort of adventures (in real life or in their imaginations). She would be riding a Harley Davidson motorcycle with my Dad and keeping meticulous score at all of her grandchildren’s sporting events. Or creating alongside them with paint, Lego or a hammer and nails. And she would spoil us with delicious cooking until she was at least 100 years old. Her grandma was who I saw her becoming – living in her own home until 100+ years old and making my grandchildren drink tomato juice with cookies. 

It was not especially concerning to me when she seemed to have issues with bladder retention. Isn’t that what happens when you get old(er)? After you’ve had babies? Don’t you pee a little at almost everything? It was a bit strange though, as the years went on, that mom had to say no to different runs/races with friends because she just couldn’t do that anymore without needing to pee. Because when the need came, you HAD to address it immediately. We got used to pulling over on the way home from Winnipeg or Brandon – it became a joke actually. As kids we didn’t see how concerning this was for mom or how often she saw our family doctor to figure out what was happening.

That wasn’t the only thing that happened though. Mom started feeling faint when she stood up or did something too quick, and she started needing my (then teenage) brothers to help her open jars of food randomly. Things like that were so weird because mom was strong. Looking back now, I honestly can’t tell you why we weren’t concerned when she started losing her balance or getting dizzy. I can tell you that it annoyed us kids and we weren’t the most patient with her at times. Why was she acting so odd and so helpless at times? This was not mom.

I planned a wedding with her help and prepared to moved to our farm/house when Brad made the career change from ‘farmhand’ to ‘farm owner’ almost a year after our wedding. She listened to my dreams of what could be with that house and supported my paint choices when others were skeptical.

In early 2011, Brad and I took a vacation to California. Mom and Dad were going to Phoenix to stay with some of their good friends at the same time so we planned to go visit them for a time during that trip. We enjoyed our time there with them - driving around Arizona, shopping at Anthropologie and eating at some of their favorite restaurants. My parents have always been affectionate – holding hands while they walked was normal – but it was on this trip that I noticed they walked with linked arms more often than not. I brushed it off as them being cute and nothing more.

There was the time the four of us went to use the pool though that wasn’t as easy to brush off. We were visiting and floating around the pool, when suddenly Mom was struggling to get upright, to get her head above the water. I think we all just kind of stood there for a moment, watching in disbelief, before Dad helped mom. While my mother was not the strongest swimmer, my parents have a pool on their yard so this situation in the shallow end was confusing and disturbed both Brad and I.

A few months later, we told our families that we were expecting a baby, the first grandchild, which was also just before my brother left to play hockey and serve with Hockey Ministries International in Sweden. I began to notice that when Mom walked, she started becoming a bit hunched over and was wobbly if she didn’t have Dad for support. I would sometimes meet her at the end of a road to drive somewhere together and there were times when she couldn’t seem to pull herself out of the car (due to the angle it was parked on, on the side of the road). I can still visualize seeing her physically fall into the car on more than one occasion.  

I had been attending a Stampin’ Up card class with mom – it was our monthly thing to do together. She loved it and as my due date grew closer, I kept going for her so I could relay the instructions if she couldn’t be there. It was at one of those classes that I found out she finally was given a diagnosis for these unexplainable symptoms and behaviours. I can’t remember if I knew she was in Winnipeg to see a specialist or if I thought it was for something else, but I do remember getting a text from her in the ‘snack break’ and feeling my heart quicken, chest tighten and my mind race. 

“The doctor thinks I have a form of Parkinson’s”

I can still remember feeling frantic and my thought process become jumbled, trying to get to the nearest bathroom and away from all the other women, tears threatening to escape and panic starting to set in. I called her and asked in as many ways as I knew how, “What do you mean? What does this mean? What did he say exactly?”, hoping that I would hear her steady voice reassuring me that it wasn’t as big of a deal as my anxious mind was making it. She did try to calm me down – I was crying hard – but I could tell she was scared. I could tell because that wasn’t something mom was often in front of us. She told me to go back to the card making and we would talk about it later. To the credit of those women there, they gave me space to re-join the group, visibly upset and red-eyed, without addressing the obvious (me and my red eyes). This also happened days after my brother had boarded his flight and arrived in Sweden. 

Fast-forward a few months to just before Christmas/my birthday. Brad and I were renovating our bathroom and attempting to clean up our basement before our baby arrived. Mom and Dad joined us on a trip to our nearest Home Depot where we picked out our needed items – all of which were a compromise of what I wanted style-wise and the cheapest items available to suit our minimal and self-imposed budget. Most of that trip is forgettable, as most menial life events are. That is until we approached a red light at the intersection of 18th Street and Victoria Avenue. That’s when the memories become life-changing and visceral.

Dad nervously started to bring up the latest appointment they had been at in Winnipeg – a movement specialist who was to provide a bit more information on her diagnosis. I vividly remember all of the shared glances – between Brad and I in the front seat of our truck, between mom and dad in the back, and between them and me. It seemed hard for them to maintain eye contact with me though. 

“The specialist thinks mom has what is called MSA – multiple system atrophy”

I remember thinking “oh this is good! It’s not Parkinson’s! It’s not so bad!” I think I even said something of that sort to them. 

“Well, actually… it’s not better. MSA is a faster progressing disease. Mom’s case is kind of rare since it usually affects men and those older than her”

“So… what does that mean? Does that mean there’s a timeframe or something…”

“The doctor says the average life expectancy is 7 years”

And then things go foggy again. I don’t recall a lot of small details. 

I remember thinking in the early stages of my pregnancy how I was so happy to have my mom around, since she lost her mom to cancer the spring before I was born. I was proud that my kid(s) would know my mom in a way that I never knew hers. Disease and loss wouldn’t touch my child’s relationship with their grandma until long after it had been established, much less before it even started. All of the things my friends experienced in their relationships with their grandmas that I never had, my kids would have. After driving home from Brandon that night, I remember thinking “Karla, you’re such an idiot. Why did you say that out-loud? That selfish future will never happen now that you said it.”

The story I had imagined playing out had come to an abrupt end.

---

It was 6 years this August since my mom was first diagnosed and I received that text. I can barely wrap my head around that most days. It doesn’t feel like that long, as though this only happened the other week, and then other times I can’t remember what my mom’s strong, healthy voice sounds like or how it felt to have her hug me. It feels too long and way too short at the same time.

I’m in constant amazement at how devastating the loss of a perceived future is or how often I’m caught off guard by something else we will never experience with Mom (again or at all). And then conversely, how guilty I can feel when I think of all the experiences I’ve had my mom for that my brothers won’t. I have been in a confusing state of grief for 6 years now, which means that many of the wonderful things we have experienced as a family are bittersweet. 

We have constantly been saying goodbye to small and big things for all of those years, closing the book on the stories we were unable to finish or, in many cases, begin. Life with a loved one dying of a terminal disease can sometimes feel as though we are always anticipating the next loss.

But, as with many stories that impact us, we are rarely prepared and the endings catch us by surprise.

When you're feeling all alone

When you're needing rest from the road
I will bring you in from the cold
When your wildest dreams wash away
I will rescue you from the waves

When you lose, when you rush
When you don't feel strong enough
Everybody needs a pick me up
You can count on me
Come what may, come what might
Everybody falls down sometimes
Don't lose hope, it'll be alright
You can count on me
Yeah, you can count on me

When you're feeling all alone
I will carry you back home

When you lose, when you rush
When you don't feel strong enough
Everybody needs a pick me up
You can count on me
Come what may, come what might
Everybody falls down sometimes
Don't lose hope, it'll be alright
You can count on me
Yeah, you can count on me

When you lose, when you rush
When you don't feel strong enough
Everybody needs a pick me up
You can count on me
Yeah, you can count on me

- COUNT ON ME by NEEDTOBREATHE

///

I used to tease my husband about how obsessively he listens to songs. Actually, it drove me crazy. And I complained about it to him, not tease. He finds a song he enjoys and then he listens to ONLY that one song until he can no longer bear to hear it. Unfortunately, that is weeks after I have reached my limits with that song. I've been a consistent 'listen-to-the-whole-album-or-playlist'/anti-repeat music listener for as long as I remember. Except this song. This song has me obsessively listening to it on repeat, much to my own embarrassment.

The second verse made me stop when I was listening to it the first time - When you're feeling all alone / I will carry you back home. I've been feeling lonely for a while now. I can't even remember when it started exactly, but I remember feeling it profoundly the year Hudson turned 3/Gemma's first year. Granted the first year of a child's life feels pretty crazy at the best of times, with the most well-behaved/chill baby... but that was when loneliness dug into my life and I've struggled to leave that darkness since then. I say darkness because it was... and is. It's not just loneliness - it's postpartum depression and anxiety, it's grief, it's valid and irrational fears while in relationships with others. Loneliness is the manifestation of all those things in my life (and my head) when I shut myself off and away from others. 

I'm learning a lot about myself, as I attempt to navigate grief and loss with a therapist and on my own. Realizing that my number one fear is being alone and/or people leaving has been almost monumental. It also feels silly and ridiculous and vulnerable to say our fears out loud.

I'm not past this fear, this loneliness, by any means. It's pretty prevalent in my life still and it spurs panic attacks that are HARD to breathe in and talk myself out of. But I'm beginning to see triggers before they provoke an attack (sometimes) and I'm getting better at seeing the truth of a situation instead of what my imagination conjures. Please consider this my disclaimer - I'm still a hot mess in this area of my life and I do not approach this from any other position but one of transparency and humility.

So what is the truth in every situation? The truth is I am NEVER alone. Situations and circumstances may feel lonely and, honestly, sometimes they are lonely. But just because I feel those things, doesn't mean that I am alone. In any situation, there is evidence of others both awkwardly and gracefully reaching out, trying to be there with me. Or people that would be if I only asked them to be.

I had a discussion with a good friend recently about a controversial topic. The question of whether we thought it was okay to choose side B over side A if you didn't have family and you were alone came up. I heard myself asking "But is a person ever TRULY alone? You may not have family but I find it hard to believe that there isn't at least one person that cares for that person..." And it surprised me. Because I've felt alone and lonely, dismissing the care and concern of others when my perceived feelings of being alone validated my fears or rationalized (in a backwards sort of way) my anxiety. The fear and anxiety feed off of the other in a vicious, destructive cycle, and I lose sight of truth when those things warp my vision.

My understanding is that the band NEEDTOBREATHE has Christian beliefs but I don't actually know who they are speaking 'as' in their song - is it to another person, a husband/wife, a child? or is it what they felt Jesus was speaking to them, to their hearts, as they wrote it? Both probably work. For me? It's about me and Jesus. He's the one who NEVER leaves, he's the one who I can count on, the one that brings me home. I could sing this to my kids and mean every single word for the rest of my life... but the thing is, I don't know how long my life will be. Or theirs either. This is true because I know people that have mourned their fathers, mothers, grandparents, children and infants. Goodness, I feel loss and the grief of life and relationship cut short profoundly in my relationship with my mom. Jesus is the only one that I know will be with me, for my duration here on this earth and into eternity when I pass on to that side. Jesus is the only one that I can teach my children to depend on completely, who will never fail them. I fail regularly despite my best efforts.

So, I may feel all alone at times, but I'm not. I'm not.

And maybe, just maybe, I would feel a lot less alone if I started to let people in a bit more. If I gave more grace and let people awkwardly attempt to 'be there', to care for me. When I've done that, I've been on the receiving end of hugs and shared tears. I've had my stomach filled by a meal dropped off in my fridge. My dishes have been cleaned without me doing them. I've been told I belong. When I share my insecurities and my fears with others, risking a less than ideal response, I invite people into my life in a meaningful way that makes being alone impossible. And when the responses hurt, when I'm disappointed and let down and I feel all alone again, I tell myself the truth of EVERY situation.

I am never alone. Because Jesus loves me and I can count on Him.

This space of mine

I recently listened to a podcast where the woman interviewed discussed her life being turned upside down and the reasons for beginning her blog. She spoke of how she didn't want to be a sentence at coffee and, because she had no control over a health diagnosis for her son, she started writing to control the narrative surrounding them.  

I suppose that resonated deeply with me - it's why I want to write here. To control some of my narrative. 

Because small children are NOT interested in being controlled. And terminal diseases are definitely not controllable. How I respond to these situations, THAT is controllable. How I share my grief and joy in all of these things, what words I chose to use to describe what is happening, of how my faith is deeper now because of it and why my questions for God are changing, well, that's entirely possible for me to determine and not leave up to anyone else.

I have been following a woman in Calgary (that is the daughter of friends of my parents) on Instagram, where she shares her journey of loss and grief. If you ever wish to be inspired and challenged, you need to follow her. They lost their son to a rare, cruel disease, kind of similar to Multiple System Atrophy (In fact, it has the same initials), and she has become a mover in that city and around the world. She became an activist for Spinal Muscular Atrophy. She did what my therapist encouraged when I asked what a person is to do with all the anger that comes with grief. You turn your anger into activism. 

This woman, Jessica Janzen/Olstad, is bold and honest and beautiful and loud in all the very best ways when it comes to sharing her loss. She has raised a crapload of money for this cause through fabulous events and fundraisers (and very generous people who give in one way or another of course).

Here's the thing - I am not that kind of woman. I'd love to be. I'd love to be brave and bold and become this incredible activist for cruel diseases and loss and etcetera and etcetera. I wish I was comfortable being in front of people, of being in my own skin some days. I wish I didn't care what others thought of me and I wish so many other almost self-deprecating things that reveal insecurities, which I know prevent me from being loud and confident with my story.

I'm just not that person. Or that person yet.

I am here, writing here for me. Sure, some people will read this. Close friends that have let me cry ugly tears in their presence. Friends that have washed my mountain of dishes for me. Friends that have ignored my mountain of dishes for me. Friends that have given me a hug when I needed it or were okay when I refused to let them give me a hug so I could keep my tears at bay. Friends that tell me I am not alone and that I belong when I feel those fears deeply. Friends that are no longer the friends that share details of our lives regularly, but acquaintances. Friends that only find this space because I (eventually am brave enough to) share this on some social media platform. I know one day people will read this - that my voice will be heard here and that super small-scale audience I might have will be a witness to my eventual activism. And while I am writing this to some unknown audience, I'm writing this for me - the future me who will look back and see how far I've come and how I've processed fears and questions. I'm writing this for the 'now' me mostly. To process all the feelings and thoughts now, so that it becomes a coherent string of words one day when people ask "how's your mom doing?" and legitimately want to know the long answer to that and how I'm doing.

I'm struggling to make sense of how to remain a wallflower and be a bit unnoticeable, while being vocal and honest about my life. Especially in a small town. Because, guaranteed, someone reading this from my little small town just asked themselves which category of friends I had put them in, in the earlier paragraph. And if you know small towns, it's hard to be a tiny bit vocal and remain in the shadows. If you want to stay in the shadows, away from the center of anything, you stay quiet and to yourself. I'm struggling with everything I want to share and the fear of sharing too much, and how that is perceived.

In my little small town in Manitoba, I desire the anonymity that is not possible, especially with a mother suffering from a rare disease, while being grateful for the friendliness of a community where everyone knows everyone.  

I want control of my narrative and I want to share but part of me is scared of putting myself out there because there is no control in how someone else receives something or responds. And truthfully, I do care what everyone else might think of me in sharing about vulnerable topics.

I haven't shared this space publicly yet, so this feels a little like dipping my toes in the edge of the water, but it also feels a little like I'm standing on the edge of a pool’s deep end and I'm anxious I’m going to find myself all the way in when I least expect it. Lord, help me when that shove comes.