Blog Postings

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 ☀️