Blog Postings

There is something about grief that makes people uncomfortable. Perhaps it is because we can not ignore our own mortality. This December marks six years since Josh passed away; yet, his death is still raw to the touch. They say time heals all wounds, but maybe the catch is that love is not a wound, so its pain like love itself, is unconditional and everlasting.

I remember the day we found out we were having a baby.
I remember the moment Josh was born.
I remember the help flight, the hospital stay, and when we first heard the word neurodegenerative.
I remember the time he first smiled.
I remember the night he left us.
I remember his joy. 

This month, while attending a teaching conference in Texas with a colleague, we immersed ourselves in conversations about pedagogy and how to improve what we do as teachers.  In addition to these work-themed conversations, we also discussed the need for self-care and our personal commitments to the people who matter in our lives outside of the student population we serve each day. We connected not only as teachers, but also as individuals with our own narratives to tell as a result of the plot lines we have endured.  She has navigated a number of life changing battles and fortunately for all of us, she is still with us.
She is tough. 
She is witty. 
She is graceful. 
She reminded me “you have to be able to still enjoy the joyful moments.” Her words defined how I have been feeling these past few weeks. My life is filled with joy, but I often struggle to just enjoy joy without guilt, without sadness, and without the overwhelming feeling of what could have been.  It is easy to get lost in the what ifs and the could have beens, and some days I have to allow myself to do just that.

I recently attended a baby shower in my college town for a couple whose excitement and happiness is down right contagious. It is fitting that the expectant mother’s middle name is Joy. The house (and yard) were filled with their families, friends, and a number of our college acquaintances most of whom I have not see in over a decade.  The casual question of “so, do you have any kids?” came up multiple times. As I have previously written, this should not be a hard question for me to answer, but I always falter in my response. Defeated by my own insecurities, I retreated outside. I sat alone on the front porch and soaked in the Montana October sunshine. For the past two years, I have struggled to interact and truly engage with people socially. For the first few years after losing Josh, I threw all of myself into social and work situations to escape being alone with my thoughts.  It was acceptable to be busy. It was unacceptable to be sad. Now, I find comfort in isolation and often think it is easier to function on my own than engage in conversations for which I am tired of searching for answers to seemingly simple questions. By giving myself the time to reflect that fall day on my friend’s porch, I was able to return to the crowded room better able to embrace my emotions and excitement. It was a joyful day. Towards the end of the party, a friend’s mother told me she had been reading my blog. Her kind words made me remember why I am committing myself to be vulnerable.

It is odd to try to convince myself that it is “ok” to be vulnerable and sad. Our society teaches us that the best response to “How are you?” is “ok.”  While back in my college town, I allowed myself the time to let my mind wander to past experiences. It was fun to look back on the what ifs and know I ended up in just the right place in life.  I believe part of finding grace is understanding as much as I try, I don’t get to control all elements of my life. Perhaps grace, like joy, is all around me and I just need a few reminders to embrace it.

Last year, the mother of one one my English 1 students was told she only had months to live. I sat at my desk in the front of the room dumbfounded as this fourteen year old informed me he didn’t finish his writing for the day because he wanted to sit up with his mom. What rationale could I give him for why his English assignment mattered?  What words of comfort could I lend him? Our daily lives and expectations become trivial during tragedy. Yet, our daily lives are what hold us together when the day is all we can muster. Sometimes we need the work to keep us busy until we can be ok being anything but ok.

As I referenced on my “About Me” page, Terry Tempest Williams reflects on her grief and the need to write as an urge to tell the story by stating,  “To write requires an ego, a belief that what you say matters. Writing also requires an aching curiosity leading you to discover, uncover, what is gnawing at your bones.” I have spent most of my life ignoring this internal voice calling me to write. The urgency is strange to explain and even harder to rationalize when it comes down to the practical “to do list” and my need to write. It isn’t a guilty pleasure, but instead a desire from one sphere of my brain that is pushing my heart and the other sphere of my brain that only wants to take a ticket and wait in line until it is ready to deal with the rest of life. To be completely honest, somedays I write crap. I know it is crap, and I have to remind myself that regardless of the plot line, crap is still crap. When I write this way, I am thankful for my husband who functions in the role of an editor. He is lovingly willing to call my writing what it is.  He pushes me to dig deeper and to stop writing what I think I should write by calling forward what I need to write.

Dierks Bentley and Brothers Osbornevocalize this struggle for balance in their song “Burning Man,” “Half your life you struggle / half your life you fly / One day I’m the exception / most days I am just like most /…I still go a little bit crazy sometimes, but now I don’t stay near as long.”  In my search for grace, somedays I feel lost in the struggle, but other days I am overwhelmed by the joy that is and always will be a central part of my life. It is true, sometimes I spend a little too much time in the crazy, but other times I am a part of the majority. 

This past weekend my mom’s side of the family gathered for a birthday celebration honoring both my cousin, who is turning 50, and my mom. They have always been birthday buddies and were sweet enough to include us in the celebration. We laughed, cried, sewed, ate good food, cheered on Michigan State, and had not one, but two made-from-scratch cakes. During the joyful festivities, we also were aware of the absence of my cousin C.J. and my Aunt Georgia. Both C.J. and Georgia lived life and loved to the fullest capacity. They were our go-tos when we needed joy and they both loved a good party. It would have been easy to miss the joyful moments from this weekend if we focused on these tragic losses, but by allowing ourselves to grieve we also were able to enjoy the time we had together.

When we love, we have joy, always.

It feels like it has been a full week, but it is only Wednesday night. There have been multiple moments of crisis that although tragic, have also reminded me of the sheer power of the human will to provide for others. I am continually humbled by the ability of others to support one another.

I am thankful for so many people who have joined me on my journey. As I mentioned in my last post, this blog is only a small portion of Joshua’s story. It was drafted over the past five years, but only became a unified text, during my final graduate school course when I was assigned to submit an original piece. The assignment gave me the excuse I needed to write, revisit, revise, edit as well as to reflect. Now, I am working to share Josh’s story with others with the hope that they will find strength and courage for their own lives through his story. I opened the original draft with the following acknowledgement:

“If you are reading this at this point in my drafting, it is because you have been a part of Josh’s story. Thank you for your continued love, support, and guidance.”

Today, that acknowledgement still holds true. September 12 is the National Day of Encouragement. I invited my students to write in response to Matt Hires’ “Hold You Up.” Each of his lines echos the way I have felt, the way I feel, as well as the doubt I have held attempting to not feel the way I have felt, as I stumble to find my way towards grace. Yet, his piece also draws me out of this doubt reminding me of all of the people who joined together to hold up Courtney and me when we needed it most. Hires’ upbeat acknowledgement of both pain and purpose pushes me to, as one of my National Writing Project friends says, “take the time for the conversations that matter.” At the end of the day, I want the people in my life to know how much they mean to me. Life can be taken so quickly.

This weekend, while grading papers at City Brew, I learned one of my past students had been killed in a car accident. She was 20. I didn’t know what to do. I didn’t know what to say. There is no speaking at times like this. So, I opened my notebook and wrote about the life that should have been and the community that is left picking up the pieces of broken youth.

Each year I walk students through a cultural frames activity. I asked them to consider how each interaction and experience from their past has shaped and molded them into the individuals they are today. It is a hard exercise for me to model, because I know I am only allowing half my story to surface on the page as an example. Still, even now, I am critical of my story and its conflicts. I am aware that I can not unlearn what I know regardless of if it is a universal or personal truth. I am the person I am today because of both my life experiences and the people who have been influential in writing those experiences.

I write searching for warmth

I write to hold the moments

Our first home had a large picture window. Daily, at 4:30 PM, sunshine would pour through and onto my sofa. It was one of my favorite spots to sit with Josh. When I was pregnant, I would come home and sit there in the bright light and let the sunshine warm the springtime Montana chill out of me. I couldn’t have a beer, so instead, I drank in the light and colors outside the window. Months later, I would fall asleep with Josh on my chest in the middle of the night not wanting to wake the sleeping house for his late night nursing. When I was home during his final four months, and we desperately needed the sun, I would open the curtains and tell him about what was going on in our neighborhood. When we knew we needed to hold onto each moment together, this became our safe space. During our last two days with Josh, Courtney and I took turns holding him tight to us, fighting off the fear we knew was fatefully upon us, and watched the snow fall.

It is a strange gift to know our time with someone is limited. I think of my student’s family whose only warning came with the harsh news of loss.

I write to continue breathing

I write with empty arms

December 17, 2012: How can we let go when we love someone so much? Looking into his eyes, I couldn’t tell if he wanted to stay or wanted me to accept he needed to go.

He had been fighting to breathe for almost a full 24 hours, 12 of which he had been in one of our arms on the living room sofa. His breathing had increased to 90 breaths a minute. We increased the baby-sized oxygen mask to its max level.

Our families prayed. A friend had pizza and a basket of fruit delivered, prepaid, to our doorstep. Her friendship and support constant, necessary, and always timely.

We held onto each moment.

Seeing the same look I saw in our son’s eyes, Courtney asked,

“Should we give him a break from the oxygen?”

“Yeah, we probably should.”

We continued holding him for another twelve hours, our breathing slowing with his.

I write; I cannot teach experience.

I write; there is never enough time.

We sat together on the sofa and took turns calling family members. While on the phone, we were strong, trying to support the person on the other end of the line. However, each time one of us heard the other say he was gone, it felt like a punch in the stomach we couldn’t defend.

A few years before Josh’s birth, I lost a close friend at the young age of 26 to brain cancer. His best friend learned of his passing when it came across his Facebook feed. At the time, I pledged to never have it happen to those I love. When we learned of Josh’s diagnosis, we set up a phone tree in the hopes that our close friends and family would not learn of our son’s death on social media. One friend, who was traveling when she heard the news, activated her branch of the phone tree sitting in an airport. Our notification tree worked for about two hours until a random acquaintance posted “So sorry to hear of the loss of your son. Praying for you” on my Facebook page. Social media can be both a means of support or another punch to the stomach.

We waited for the on-call hospice worker to arrive to confirm Josh’s passing. There was a knock on the door. I answered assuming at 6:00 PM on a Monday night it was the on-call hospice worker, instead it was a door-to-door vacuum salesman. I am familiar with some of their pitches, but this man, young and seemingly new at his job, appeared nervous as he frantically spit out “Do you use Kleenex?” instantaneously as I opened the door. I said, “I do,” and he launched into his vacuum selling campaign. I soon stopped him with my unsteady “I am sorry, our child just died. We really aren’t interested, but yes, we have been using a lot of Kleenex.” He stared at me, then looked past me into our living room to see Courtney holding Josh. “I am so sorry. May I give you a hug?” I accepted his hug and said “thank you.” He left, and Courtney and I laughed a little wondering if the man would call it a night, after mistakenly thinking it was a good idea to knock on our door.

Three days earlier there had been a school shooting in Connecticut at Sandy Hook Elementary. When the on-call hospice worker arrived to confirm Josh was no longer with us, she told us we were fortunate since we knew our child would die. Within an hour and a half of our son’s passing, she told us we should be thankful because she couldn’t imagine how sad the 20 families were that night. The shooting was tragic, we agreed, but her comment caught us off guard because in that moment, all we could think of was our loss.

If you don’t know what to say,

Sometimes saying nothing is better.

Over time we have received hundreds of comments similar to hers. Sometimes I brush it off, other times I come unglued. I remind myself one can not compare loss, grief, or a level of sadness. Loss is loss.

To allow space for our grief, we went to the nursery and held Josh until the mortician arrived. We could hear the hospice worker playing games on her phone in the living room, each Angry Bird explosion echoed through our silent home. I still hear that sound when I think of that night.

While we waited, another friend arrived. She had heard the news and wanted to know if we needed anything. We thanked her for her support and asked to have a little more time alone as a family. Again, support came in the form of a friend.

When the mortician arrived, he introduced himself and said “I am so sorry for your loss. I am a grandfather and I can’t imagine what you are going through.” He waited for me to say goodbye and then ever so gently took Josh from my arms. He said “I have the heater going in the car and will seatbelt him in so that he will stay safe on the drive.” I handed him Josh’s blanket and waited as he carefully wrapped it around my son. It was a genuine gesture of kindness.

Courtney and I sat for a while in the living room and then decided we should go for a walk. The stars were out. The December air was the kind that burned our lungs. Christmas lights lit up in our neighborhood and we walked the half a mile to the post office, not really to check mail, but just to have a destination when we didn’t know where to go.

Sometimes when you don’t know where to go, you just have to keep going. But as you go, it is important to remember we are not alone on the road. Matt Hires’ writes:

“Out of sight

Out of mind

And the silence won’t break

All your signals in the sky

They go unnoticed

Left alone

Left behind

And it’s all you can take

When it’s all you can take

Let me be your escape

Oh and nothing’s gonna stop my love for you”

Courtney and I asked a friend to compile a slideshow to share during Josh’s service. It was a gift of true compassion. In almost every photo, our handsome man was in someone’s arms. He spent his entire life being literally held up by those who loved him. I believe there is grace to be found in our capacity to love.

I hope my love for my son is evident not only in the way I cared for him, but in my commitment to share the hard stories with others who may feel alone in the silence of grief.

This past weekend I completed my second marathon. My sister flew out for the weekend and left encouraging sticky-notes in my shoes and on my race bag. All along the 26.2 mile course, I had support and love from so many of my key supporters. It was still a long race, but I didn’t have to run it alone. Emma even gave me a high five before I crossed the finish line.

Grief, unlike a race, doesn’t have a finish line. I think of the family who is just beginning this race. Tonight my heart is heavy, but I know the morning will bring sunlight.

Donald Murray, in his introduction to Crafting a Life, provides the repetition of the clause “I write…” to seamlessly move the narrative of his life through conflicts and various resolutions. Over the past ten years, I have written, reworked, and continue to write using his line. Each writing brings to the forefront of my narrative the lingering question of “Why do I write?”

This is my thirteenth year of teaching. As I welcomed 73 freshmen and 48 seniors into my classroom, I told them I have always thought the first few weeks are the most challenging because we spend so much of our energy trying to figure each other out. Most of the students I do not know before the first day. Growing up in a small town, the concept of this yearly first impression is unknown to me. I can still tell you the names of all 46 of my high school classmates, as well as most of the students in the classes in front and behind of my graduating class.

Daily, I stress for students to recognize and embrace that they control their own narratives in regards to who it is they portray on the page. We discuss audience, purpose, and voice. We examine how the content we write can be many layers down or only surface deep, but that whatever we put on the page is still us. If we protect our narratives, it is not that we do not have a story to tell, but rather that we haven’t found our audience.

Later in the semester, I share with them the story from the week after Josh passed away. A Facebook friend who had a son with the same terminal Menkes diagnosis commented that she didn’t know Josh was sick. It made me realize I had only included the version of my life I wanted others to see. In this version of my story, my little boy was full of life. I think this partial truth sharing is all too true for adolescents and what they portrayed through various types of social media. But, it isn’t a conversation I am willing to have the first week of school. Even now, years after losing Josh, I am cautious about with whom I share his part of my story.

The point of this post isn’t to stand on my hypocritical social media soap box. Instead, it is to call myself to the table in regards to what I choose to write, the me I am able to share. It is the part of my story I want to share with an audience who has opted in for better or worse. It is the me who is strong enough to show I am vulnerable.

Last summer, I completed my M.Ed program with a nine credit class which culminated in a final portfolio. Over the course of the class, I kept bumping my head into the wall of what I should write versus what I wanted to write. Ironically, I am frequently frustrated that my students want to write on the safe paper instead of a real paper. They write what they think I want to hear instead of what they actually need to say. The portfolio presented me with the same challenge and I was struggling to find my voice.

The program director gave me the excuse I needed to put into form the writing I had been drafting since Josh had been born. She told me “write about your son if that is what you need to write about. Stop trying to write what you think your students need to see.”

I write to find myself

I write since he cannot tell his story

Everyone has a story. When I was in college, I used to sit at a coffee shop and create stories in my head for each person who walked past the window.

I wonder what story someone would write about my life those first few months after Josh’s death:

Does my grief show on my face? Is it obvious a part of me is missing? Or, do I have everyone fooled? Could someone write the narrative of this Monday morning:

I went for a three-mile run. Now, I am rushing to get to work by 11, but my car automatically turns into the snow-covered cemetery. I pull the snow shovel out of my trunk and dig my way to his marker. My frozen fingers delicately revealing his name on top of the stone.

I know that he is not here, but it makes me rest easier knowing I stopped, even if only for a minute. I question my briefness and wonder if it is the negative wind chill or the pain of reality that drives me back to my running car. I place one of the solar dragonfly lights in the cup next to his stone so, like in his nursery, there will be a light in the night.

At home, his crib sits unchanged: a month-old impression set in his memory gel pillow, his smell still on the blankets. Every night, I turn the nightlight on and fight the urge to stay there more than I know is sane.

People keep waiting for us to break, fall, or crumble. They do not understand we already have. They ask the question, “How are you?” and wait for us to respond. I can only answer with partial truth: “We are hanging in there. We are taking it one day at a time. We are surviving.” How long will it take before I can respond “good” and not only say it, but believe it?

I write for grieving parents

I write for the student narratives I wish I had the influence to change

A few years ago I opened the paper only to find a student’s obituary looking back at me. I pray for comfort for his family. I am sad to know his death could have been avoided. I remember sitting with my Grandpa Hilderman when my Aunt Kathleen passed away. This rugged cowboy, whom I had never seen cry, sat in the hospital room, face in his hands crying as he stated, “No father should have to bury his child.” I didn’t know how to comfort my grandfather and could do nothing to ease his pain, but place a hand on his shoulder, and cry with him.

As parents who have lost a child, we hold our heads up, and cry in silence so as not to make others uncomfortable. Our society is not tolerant of grief. We categorize, trivialize and compare our lives to others. Our social media posts illustrate perfect lives, but we do not live perfect lives, so instead, we try to portray only the positive.

In August of 2016, my Facebook feed full of first day of school pictures caught me off guard. Josh would have been in kindergarten. I sat in the school parking lot after work and sobbed.

I write for hope

I write for courage

Joshua taught us many things about life through his innocence and suffering. He showed us our lives are fragile, but our relationships and the moments we share are what make us. I had a friend tell me “It’s not that I didn’t like you before, but you were so uptight and dramatic. The new you is a gift that Josh will continue to give you and you are a better version of yourself because of him.” I hope so.

I want to write his story, but struggle to find my voice. Emily Rapp writes beautifully in the first line of her memoir The Still Point of the Turning World, “This is a love story, which, like all great love stories, is ultimately a story of loss.” How do I write the story so it is not only of loss, but also of love, hope and courage?

I write for him

I write for me

I write…

There is something wonderful about having the excuse of being out of service to step away from communicating with the communities of which I am a member. For a week, my phone remained off. I simply enjoyed the company of family and friends at my in-laws’ lake place.  That said, I also enjoyed returning to service and re-connecting. When my phone found service, I had an email with the subject “Blog?” and the message simply “I miss it” to which I replied a photo of the lake at sunrise.

Part of my relaxing vacation included a 16-18 mile run.  The lake circumference just happens to be 17 miles. Courtney and his sister, Tiffany, had completed the run years before as Courtney prepared for the Rut Ultra Marathon and he advised me it was a bit hilly, but beautiful.  Courtney lovingly agreed to meet me at mile 10 with encouragement and a fresh supply of water. The night before my run a house guest questioned, “What do you think about when you run for four hours?” My response, “It is more what don’t you think about.”  Perhaps it was her question, or the dense Western-Montana underbrush that made me more aware I was alone on a trailwith nothing but my thoughts, but the majority of the run I thought about what I was thinking. Four hours also gave me a lot of time to overanalyze and critique most aspects of life.  

When you run by yourself, it is easy to get creeped out.  I only saw a handful of cars during my run and most runners can tell you stories about the eerie feeling distributed by slow moving cars even if they turn out to be early morning newspaper delivery drivers.  One white car slowed down a good distance from me. My quick evaluation established it may be better to show the driver I saw him and politely step off the road, even though there was plenty of room for him to pass me.  As the car passed, the driver extended his arm out the window and gave me a thumbs up. It was such a simple gesture, but it reminded me how much genuine encouragement means, especially when I am tired. For me, the same is true with grief. Knowing I will be ok, but being reminded it is ok when I am a mess is part of what keeps me going.  The driver could have sped past me leaving me freshly dusted with gravel and sand. He could have extended another finger, but he didn’t. He took a fraction of a second to encourage a random stranger. It is this type of community I need both as a runner and in other elements of my life. Courtney and I have been fortunate to have support from many communities as we navigated life with Josh, as well as now, navigating life without him.    

One community I am thankful to be a part of is my group of running girls: the Go Go Girls.  We started running together in 2013 so I often forget they never met Josh, but they have welcomed me and my memories of Josh with open hearts.  We are a diverse group of women, but put us together on a road run and it gets pretty silly.  These girls are a huge part of why I have continued to run.  As I trekked up yet another hill around that beautiful lake, I wished they could have joined me because the hills never seemquite a huge when I have company. Well, that isn’t true. They would have seemed just a huge, but at least there would have been another voice besides mine cursing under her breath as we climbed to the peak and rejoiced on the other side.

Farther into my run, I had the unnerving sense I was being watched. Knowing more than likely no humans were hanging out in the brush I decided to take action by singing out loud for a few miles. My out-of-breath rendition of Brandon Heath’s “Wait and See” and Old Dominion’s “Stars in the City” effectively scared away my fears of whatever, or whomever, was lurking in the underbrush. My marathon training playlist is a bit random, but it works for me.  One of chorus lines of Heath’s song is “There is hope for me yet.” There is something about this verbal reminder that I can keep going, even when I am tired and want to stop.  Old Dominion’s piece reminds me “There can be beauty in the broken if you open up your mind.” It too, pushes me to look at life through varied lenses. I can no longer go back to how I viewed the world before Josh, but I can take the altered perspective I have as a result of being broken to find ways to heal.   

One funny part about my run was I literally ran in a circle.  I reflected on how much of my life I feel like a hamster on a wheel. Frequently I am unsure where I am going and often feellike I am getting somewhere only to realize I am still running the same circled track. A coworker asked me this week where I see hope. I have hope, but I am not sure where it comes from. Perhaps it comes from those around me who keep reminding me to keep going, even if it feels like I am running in circles, and even if the person is only someone who entered my life for a fleeting moment on a dusty road.  

This week I ran across an excerpt from Haruki Murakami’s What I Talk About When I Talk About Running in the new textbook for our English 1 curriculum.  I was intrigued by the entry and was unfamiliar with Murakami and his story.  I have added his name to the list of runners and writers of running I hope to learn more about.  Towards the end of the entry, Murakami reflects on being passed by a group of young, female college students, “One generation takes over from the next. This is how things are handed over in this world, so I don’t feel so bad if they pass me. These girls have their own pace, their own sense of time. And I have my own pace, my own sense of time. The two are completely different, but that’s the way it should be.”  His words summarize the way I have been feeling recently as a runner, as well as the oxymoron I feel I am stuck in as I try to grieve gracefully.

There are a number of characteristics about running that help it function as a metaphor for life.  This summer I have been struggling to find my pace literally and figuratively. I understand we all have our own paces and our own understandings of time. It is why I never start at the front of a race, or why I tear up when I see someone who is working incredibly hard to walk a full marathon.  Yet, his commentary about a generation taking over for the next is where I start to flounder. As cliche as it sounds, I try my best each day to run my race, but often at the end, I feel like I missed the start line and am instead running my race on a treadmill.

I write while I run
I write for my survival

In September of 2011, I told my principal I couldn’t teach. I wanted to be home with Josh.  The rest of the semester, thanks to the incredible support of donated days from the school staff, I didn’t miss a paycheck.  They gave me the gift of time with my son. I cherish the memories of these days. No work is more important than time with family.  

Running became my outlet from the intensity and emotion of my daily routine caring for Josh.  Terry Tempest Williams, after losing her mother to cancer, was told walking would help. She describes it as “not a medication, but survival, one foot in front of the other, with my eyes focused down, trying to stay steady.”  I dabbled in running, but didn’t consider myself a runner. Courtney had run cross country in junior high school and had recently started running again when Josh was born. He completed his first half marathon when Josh was only four months old and then his first marathon when Josh was fifteen months old.

While a respite worker sat with Josh, I would run.  I wasn’t able to run far, not that I could have at that point anyway, but I ran loops around my neighborhood. I made sure my phone’s ringer was on high and each phone notification caused my heart to race in anticipation that I would need to sprint home.  My Garmin course maps always appearing as a poorly drawn Family Circus comic with a number of routes all looped back on each other.

Courtney’s youngest sister, Tiffany, in January of 2013 called to see if we would be ok with her running 13, half marathons in 2013 in Josh’s memory. Courtney said we would be honored, and that he would join her. The two of them ran 13-13s-in 2013.  Training for races gave us an answer to the people who wanted to know what we were doing, but didn’t want to ask how we were doing.  It gave us something to hold onto and something to do together. I went from dabbling in running to running four half marathons that year.  In December 2013, one year after Josh’s passing, we met Tiffany, her boyfriend, Courtney’s uncle and aunt, and a dear college friend in California to run the 13th race together. We finished the race along the Pacific Ocean. It was appropriate knowing we had stood on its beaches with Josh in our arms a little under two years before.

As a result of Tiffany and Courtney’s memorial the half marathon distance became our distance to memorialize Josh.  We were aware of a local foundation that pays funeral expenses for children under the age of one in the state of Montana.  We approached the Ramsey Keller Memorial founders and asked if we could add a half marathon in Josh’s memory to their already existing 5K and 10K Run for Heaven’s Sake race.  They agreed. The first year we had over sixty half marathoners. The race course was well aided with almost eighty volunteers consisting of our friends, families, and coworkers.  The following year, RKM honored Josh by renaming the half marathon section of the race the Joshua Tyree Half Marathon.  Each May, we witness as Josh’s legacy provides resources for others who are suffering.

This summer I am training for my second full marathon.  There is something about having a race on the calendar that puts my mind at ease. Training for a race gives me the pressure to get out of bed and an excuse to put in all the selfish miles.  The hours alone on the pavement give me time to think. Other days, training gives me a chance to avoid thinking and do nothing but focus on putting one foot in front of the other. Running has become my escape, but also a home-base for feeling grounded.  

One of these days I will find my pace and my own sense of time.  Until then, I have to know some days it is enough to just keep running.   

In a recent conversation about my decision to start blogging, my Aunt Lee Ann made the valid observation: I have not defined grace.  The English teacher in me knows to reply “there is not a single definition of grace” is a side-step to addressing her question. However, over the past five years, grace is the single word I continue to come back to in my moments of need: need for hope, need for love, and a need for acceptance of my grief.

I believe grace, like grief, is fluid in action and interpretation.
I believe grace is obtainable, but not quantifiable.
I believe grace is striving for hope and patience when we feel all is lost.

In six months, Courtney and I have lost three of our cousins, my aunt, and a great-aunt.  Reflecting on each loss I remember the love of the individual and how much they each gave to my life.  Most of all, I empathize for the sisters, children, wives, husbands, grandchildren, mothers and fathers who are now desperately finding ways to survive.  Aunt Lee Ann shared with me that she feels “we are so sad because we loved them so much.” I believe this is true.

When I say I am trying to find a way to grieve gracefully, I mean I want to find a way to balance the loss I feel with the happiness and guilt I have for still being alive. The stages of grief (denial, bargaining, acceptance, anger and depression) are cyclical not linear. I believe this cycle is part of life and where we are on its spectrum is constantly changing.

We began the grief cycle when Josh was diagnosed.  We made the most of each day we were given with him, yet, we began to grieve when they told us he would die.  We grieved the life we had hoped he would have. We bargained with anyone who would listen. We began grief and marriage counseling.  Depression was a constant battle, but we continued to win the battle armed with each day Josh lived.

I write to remember the good days
I write to remember each day

After his diagnosis, we traveled to see family.  Family came to see us. Our community became our extended family.   We went back to work. Josh went back to daycare under the watchful eyes of Ms. Julie and her four-year-old grandson, Aiden.  

We read books, played with the dogs, and did our best to not focus on the end, for fear of losing the present.  Josh experienced all he could of the world from the backseat of our Toyota Corolla and his enclosed bike trailer. We went for bike rides with friends, rode trails through Glacier National Park, and rode around our neighborhood.  We traveled to California for a family wedding where Josh sported a tux-sweater knitted for him by his Grandma. On the trip, we held Josh in his car seat so he could see the Pacific Ocean. We watched his eyes light up at the colors, when we toured the Monterey Bay Aquarium.  We made the most of what we could while his health tolerated it.

We celebrated Josh’s first birthday with friends packed into our tiny home.  We had angel-food cupcakes and a papier-mâché piñata filled with candy. It was a time for celebration; yet, we all knew it would more than likely be the only birthday we would celebrate with him.  

Later that week, Courtney had a copy of Joshua’s footprint tattooed on his right calf. I had “Be strong & courageous -Joshua 1:9” tattooed on my right foot.  We did not want to wait until after his death to get the tattoos so when people asked us why we had them, we could honestly answer, “to celebrate our son’s first birthday.”

Eventually, a feeding tube, oxygen mask, 2 hour rotations of medicine and Josh’s weakened immune system ended our travels.  Even during this time, we searched for the positive in the cycle of grief.

We were able to keep Josh at home instead of having to hospitalize him.  Our home looked strange to visitors, but to us, it was still that: home. The guest room became a storage closet for the oxygen machine and other medical supplies.  Instead of going to the doctor, a doctor came to us. It was explained to us that the hospital and hospice have conflicting missions: a hospital works to keep people alive and hospice provides the resources to be able to die pain free.  We will forever be thankful to the large care team, from the hospitals, clinics, and hospice who cared for not only Josh, but Courtney and me during Josh’s life.

Hospice provided us with three hours of respite care a week for the final months of Josh’s life.   The idea of needing a “break” from my terminally ill child seemed like poorly used irony. I felt guilty knowing how many other mothers could use a few hours each week away from their infants.  The respite provider could not push meds, but she could change diapers, read books and hold Josh while we went out for groceries or for a quick run.

One special respite provider, Mama J, grew to become a part of our family.  She would join us at ten o’clock at night and would leave at six in the morning.  The first night she was with us, I was concerned about how much she was using the suction machine. It took me a while to realize it wasn’t the suction machine making the noise, but Courtney snoring. It had been over a year since we had slept in a dark room without the sound, light, and noise of the baby monitor.  I closed my eyes and fought tears knowing soon we would sleep in darkness every night.

Since Josh’s passing, Courtney and I have had to respond to some fairly ignorant statements from people regarding the loss of our son (i.e. comparing the loss of our child to the loss of a beloved dog). On days like this I find myself cycling back towards anger. When I am asked to check a box on a form to indicate how many children I have, I stare at the form reeling between denial and acceptance.

It is my hope to gracefully stumble through life and not become lost in this cycle. I am not writing this blog as a how-to grieve.  I hope only through my vulnerability I am able to provide a voice for so many of us who need to know we are not alone.

This was an emotionally charged weekend at our house. Saturday was Courtney and my eleventh anniversary.  Sunday was Courtney’s first Father’s Day with Emma.

Courtney is an exceptional husband and father.  Over the past eleven years, our love for one another has been tested in ways I hope other marriages never have to survive.  I would like to be able to tell you we have the perfect marriage, but that would not be honest. Our marriage is work, but it is worth the work.  Over the years, people have felt the need to tell us “Losing a child is hard on a marriage.” Statements like this make us even more stubborn about staying true to each other.  

We promised Josh we could take care of each other after he was gone.  

Most of my favorite Josh memories are those that include Courtney: silly giggles during afternoon playtime, Courtney driving like a race car driver (complete with sound effects) on Josh’s first trip to the ocean, and so many more. 

When we found out we were having a boy, Courtney planned to teach Josh to play soccer, help him learn to fish, and to take him hunting. He assumed he would have a hunting buddy and together, father and son, life would be as it should be.   

We were put on a help flight to Denver Children’s Hospital. Each day the tests returned news a little worse than the day before.  When we found out there was brain damage, Courtney knew he would never be able to take Josh hunting without special accommodations. Then, as the prognosis advanced from sick to terminal, we were told he would never grow old enough to experience a second birthday.  The final diagnosis informed us if we had another male child, there would be a 50% chance he would have the same terminal diagnosis.

Our world crumbled with each test result.
They told us we couldn’t do anything.
We fought to prove them wrong.

We drove Josh home.
We promised we would not regret a day together.
Through it all, Courtney was graceful.  

In the early months after Josh’s diagnosis, Courtney made the profound observation “we all grieve differently.”  There is no how-to-grieve book and it is a messy, lifelong process. This observation allowed us to accept the way we both process grief.  Now, years later, we still have to remind ourselves to be gentle with each other. Birthdays, special events, and holidays are days when grace and love are needed in abundance.

Yesterday, on a cold, rainy Father’s Day, we set a tent up in our living room.  We celebrated Courtney and his love for his family. We called our respective fathers to tell them how much their love has made us the parents we are. 

Some people are under the impression having a second child will heal the loss of a child. Emma does not heal the pain, but she provides hope.  Yesterday, Emma took her first steps and fell into her father’s arms. We clapped, hugged her, and held each other as we cried.  

Sometimes baby steps are big steps.

I am one of those people who reads to prepare for life.  It is my way of pretending I am in control, even though I know I can not control life or the loss of it.  When Courtney and I decided we were ready to start our family, I read a lot. I have chronic headaches and I was fearful they were a sign of a larger issue that I would somehow pass onto my offspring.  After many doctor appointments and lots of reading, all tests confirmed I was medically sound to start a family.  The day the + appeared on the pregnancy test (or all 3 of them) the first thing I did was buy a book.  

When Josh was diagnosed, the pediatrician suggested we put the parenting books back on the shelf.  It was wise advice and the books remained closed for years.  The classic How to Care for Your Child textbook held no answers for how to care for our child. 

In the fall of 2017, we were given an opportunity to welcome a seven-month-old baby girl into our family.  We have nicknamed her Emma.  Her arrival has brought joy, lots of laughter, as well as the common side-effects of parenting: exhaustion and anxiety.  The parenting books have returned to their place on the coffee table.  It is a bittersweet to now read the pages that were so far out of reach during the life of our first child.  

Weekly, an acquaintance who is unaware Emma is not our first child will provide some paraphrased form of the the all-knowing sentiment “Oh, yeah. You read a lot of books with your first child.  When you have the second one, you will not be as worried about all of that.”  Each time I have to check my emotions, search for grace, and reply “Yep, I guess so.”

It sounds strange, but I am trying to learn how to parent a healthy child.  The level of normalcy leaves me uneasy.  We loved and cared for Joshua under the constant stress of physical and emotional crisis for two years.  At the time, I couldn’t understand how everyone knew he was sick. To me, he was our “handsome man.”  I view videos where I narrate on how good he is doing.  Now, I view them through an altered lens.  I see what others saw.  

Dr. Tim Kimmel in Grace-Based Parenting identifies fear as one of the root causes of what he considers failed parenting. Daily, I face the challenge of balancing the fear I have as a parent who has lost a child and the strength I have from such a loss. Maybe I am failing, or maybe this is what grace feels like. A friend recently told me, “That is when you know you are a good parent – when you are worried that you are a bad parent.”

I do not want to be a fearful parent.  I have read fear is a sign of a lack of faith.  I do not question my faith, but often feel fear makes me the resilient mother I am today.  

---

I started running when Josh was diagnosed with Menkes Disease. The past few years I have been fighting the voice in my head that has been whispering “stop running away.” Last week I hurt my toe and thought I wouldn’t be able to run this summer. It was the slap in the face I needed to remind me why I run. This summer I am making the commitment to answer the voice by believing “I am running forward not away.” #sunshineontheotherside ☀️