Blog Postings

Why I Write

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…

A Need for Community

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 Seeand 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.  

Finding My Pace

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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.   

Hope and Grace

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.

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Baby Steps

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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.

Fear

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.  


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Where to begin

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 ☀️