It was all worth it

She sits, perched on the edge of a narrow bed, her arms clutching a pillow at her midsection. A stranger in a shapeless green uniform and disposable mask stands before her, stretches out his arms and clasps her shoulders. The silent action is a cue for her to lean into his hands, to steady and brace herself for what is to come. She briefly makes eye contact and her fear must be evident - even with just his eyes visible, she sees the small, empathetic smile he gives, as if to say there’s no reason to fear. 

Her mind begins to race as she feels her back is now exposed to the cold air; she grips the pillow tighter, she squeezes her eyes shut. Her eyes remain tightly closed in an attempt to keep the tears she feels building at bay - tears of excitement, and most certainly, also fear. Of the known and unknown, the remembered and forgotten.

She can hear activity around her increasing as more people enter the room. They introduce themselves but her adrenaline prevents her from retaining that information. She hears a man, sitting behind her, narrating the steps that will be taken before inserting a needle into her exposed back; before she loses sensation and movement in the lower half of her body, before she experiences further vulnerability in this cold, sterile room.

Laying down on the narrow bed, a disposable curtain now obstructs her view, her arms spread wide to either side, while cords connected to numerous monitors are adhered to her body, she feels the bed tip and tilt beneath her and the noise increases. She wonders if they notice how fast her heart is beating, how it increases as her helplessness grows and she lays there overwhelmed and alone.

Automatic doors hiss open and shut, disrupting her thoughts. She turns her face to see a familiar set of eyes looking down at her. He smiles at her and she conjures up every ounce of bravery she has for him, for what is yet to come, while at the same time fighting back the tears she refused to let fall earlier. He holds her hand and she squeezes it, as if that touch could transfer some of the fear she feels in her body to him. He sees the tears she tries to hide, squeezes her hand back and tells her it will be ok. She focuses on the feeling of her hand in his and the feeling of safety she experiences in his presence, instead of both the subtle and aggressive movement she feels and the sounds of metal instruments being used on the other side of the blue curtain. She squeezes her eyes shut once more, praying again for strength, protection and health - ‘Help me be brave, and keep us safe.’

There is pressure, and then there is not.

There was silence, and then the first cry was heard.

Her tears fall freely - they are about to meet their baby. Their unexpected gift.



I began using PowerSheets (which is essentially a goal setting book) at the beginning of this year, and haven’t done much with them recently, but part of the process is to find your word for the year. When I began, I didn’t feel any one word resonate with me, to sum up my goals or theme of my year. So I didn’t claim a word, but I'm beginning to think a word claimed me.

The bits of encouragement I’ve discovered recently and over the past year - on the internet or in books and devotions I am reading or songs I’m listening to - are all centered around ‘waiting’. In fact, much of what I am trying to teach my children lately is about waiting and patience... but it’s something that I want to them to grasp without having to model it myself.

I had a conversation with a friend the other day (she recently shared a quote by Jamie Wright on Instagram that summed up our conversation perfectly) about how we all want to talk about things in past tense - that something was ‘fixed’ and we are better now. How we want to push people towards healing and want them to be ‘over it’ instead of being messy and in the middle of it. We do this to others and we do this to ourselves. The quote acknowledges that the writer is in the middle of the mess and doesn’t have (as she says) "a redemptive conclusion" for her readers. Waiting, in my opinion, is both messy and without a redemptive conclusion. Yet.

One of the things I’m learning about/in grief is that there is a lot of waiting. And I’m learning that in waiting, there is a lot of grief. Waiting on something you want SO BADLY is hard and there comes a point where I’ve found myself having to acknowledge that perhaps my preferred outcome may not happen - at all or in the way I'd like it. I continue to cling to hope, but I recognize the importance of mourning that loss in my life - that death of a dream or perceived future, that unmet expectation I naively thought was a guarantee. Perhaps that thing in my life is simply delayed. Or perhaps it’s not and I’m waiting for something that will not come. 

Almost a year ago, I submitted an essay to a blog I follow that I titled “Growing Grief”. I had spent some time in my garden that summer, and more time ignoring it if I’m honest, which prompted reflection on the similarities between the plants and areas of my life thriving or suffering. At the time, friendships had ebbed more than flowed, babies had been born to others (or were still in utero but announcements had been made), and I felt overwhelmed in so many areas of my life. Touching everything on top of that, was my grief – for all that I will not have with my mom and for my own perceived failures as a woman, a mom, and a creative.

I marvelled at the plants that grew in spite of my lack of care that summer, at the plants that grew as a result of tilling the plants from the previous year into the soil. There were areas that I had put effort into that didn’t produce a thing. And there were weeds - in abundance there were weeds and other invasive (but not necessarily ‘bad’) plants that I couldn’t keep from overtaking my plot of dirt. In my essay, I reflected on how unqualified I felt when compared to the lineage of crop and garden growers I come from. I lamented that despite growing up as a farmer’s daughter and now being married to a farmer, I wasn’t very good at growing. At the time, growth and growing were the focus of that written work. Now, however, I see wait as the over-arching theme, throughout the essay and my life since I wrote those words.

The basic premise in farming (or gardening) is to put a seed in the ground and wait for days, weeks, months or years before it turns into something that is either beautiful or provides nourishment to our bodies. Sometimes it amounts to something and sometimes it doesn’t. Sometimes, weather hinders or prevents growth and sometimes it facilitates a bountiful harvest. Through it all – through what we can control and what we cannot in the growing process – we must wait and we must be patient.

There is a song by Hillsong Worship called ‘Seasons’ that I’ve had on repeat for long stretches of time. As I listen, I’ve had tears stream down my cheeks or I’ve sung along passionately. I’ve found myself being able to do nothing but sit still as I’ve absorbed the words and, alternatively, I can’t help but move to the music at times. Without fail, every time the song reaches the bridge, I feel these words profoundly:

You’re the God of seasons
I’m just in the winter
If all I know of harvest
Is that it’s worth my patience
Then if you’re not done working
God I’m not done waiting

The thing about planting something from a seed is that the seed must die before anything can grow. And then you wait. And wait some more. Until you see those first tiny green bits protruding from the dirt. Until you see the growth.

Sometimes, waiting hurts and feels a little like experiencing a death. Sometimes the dreams we hang on to have to die and change shape. In fact, as someone whose life is saturated with growers, I know that any growth we see in our garden beds, our fields and our lives is because something died and changed and it took time for that process to happen. What is produced always takes on a different shape than what we sowed, in hope and with moisture from the sky or our tears. And it always requires waiting for the harvest.

Grieve. Wait. Grow.

These are the lessons, the words that I’m learning to live.

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.

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". 

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.

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

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.