Living the Unimaginable-Losing a Child

It doesn’t take long to realize, when you are a part of the community of families with kiddos battling critical illnesses, that grief comes with the territory. However, grief of losing a child puts one in new territory—living the unimaginable.

I have 2 friends who are living the unimaginable after the losses of their children & they keep my soul tender. ‘Widow’ is a Sanskrit word that means ‘empty’ & so the loss of a spouse has a word to help define the unwelcome new status death has left. But, there is no word for the unnatural or disorderly loss of a child. If we use etymology, we can chase ‘widow’ down & find the Sanskrit word, ‘vilomah’. Vilomah means “against a natural order.” The Chinese have a saying, that the grey-haired should not bury those with black hair. Or, our children should not go before us in death & when they do, parents are vilomahed.

Unfortunately ‘vilomah’ isn’t used in our language & so putting a word to the profound loss of a child leaves parents deprived on so many levels. But ‘vilomah’ helps begin the discussion of living the unimaginable—the unnatural order of losing a child. 

I asked one of my friends to put some of her story in words & that narrative follows my italicized introduction. 

Sara & I became friends as our daughters had rigorous physical therapy sessions simultaneously.

Our girls often had friendly competitions to spur one another’s bodies & spirits along the way. We laughed together when ‘crutch hockey’ broke out, ‘walker soccer’ & obstacle course challenges were set up while the girls & their physical therapists were fully engaged in friendly banter. 

When my friend’s daughter, Anna, died unexpectedly, my daughter & I felt a profound loss.

We bumped into that loss when we went to physical therapy & no longer had exchanges with our friends there. I didn’t want the loss of common time shared in physical therapy sessions to end our friendship but, I also realized her world had drastically changed. 

What I didn’t expect was for this friend to write me regular letters cheering me on as she intimately understood what challenges I was facing as a mom, probably more than most. Her regular letters & our emails have bridged some gaps that the pandemic magnified. I share her story for all of us— those who are living the unimaginable & have lost a child & those of us who know ‘vilomah’s— to hopefully provide comfort, understanding & a safe place for grief to be shared. Here’s her story—

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Until 2014, I was a typical stay-at-home mom with three young kiddos to fill up my days.  Our oldest, Anna, was in 1^st grade, our middle child, Kate, was in preK, and our youngest, Ethan, was a pudgy, loveable toddler.  My identity was tightly woven into the role of “mom”, with most of my close friends in similar roles.  We connected with one another during story times at the library, play groups at church, long picnics at local parks, & most any setting that could include our young children.  We shared with one another our joys and frustrations, but mostly a companionship with others who were in a similar stage of their parenting journey.

In February of 2014, our oldest was diagnosed with a form of pediatric brain cancer.  Anna’s main tumor was located in her cerebellum, but the cancer had spread to all parts of her central nervous system.

Any & every physical skill that this bouncy, typically developing 6 ½ year old had learned by that point was erased by the effects of the disease & its treatments.  After an initial 3-month hospital stay, we brought Anna home, but in a neuro-muscular state that was akin to a newborn.  Although Anna’s personality & intelligence were still intact, her physical abilities had been wiped out.

While the rest of the world kept moving forward, our world took a sharp turn that year.  Our days were suddenly filled with doctors, nurses, in-home therapists, appointments, chemotherapy visits, hospitalizations, subsequent surgeries, & educational staff as the summer neared its end.  My husband & I mourned the daughter we had known prior to cancer, but embraced our “4^th child”, as we sometimes jokingly referred to post-cancer Anna, with the same love & care that she had always known.

I wasn’t fully aware of how my identity and relationships were changing at the time, but two examples stick out in my foggy memories of those exhausting months that shed some light on the subject.

I remember a small moment when one of Anna’s in-home therapists called me by my first name.  Although I can’t place the exact details surrounding the experience, I can remember the shock and surprise I felt at hearing my own name instead of being referred to as “Mom” by the professionals helping us care for Anna.

Even at the time, I could understand and appreciate how much easier it was to refer to parents as a patient’s “Mom” or “Dad”; keeping track of patients’ names & their family members must be pretty tricky.  But I also remember how deeply I wanted my identity to include me as a whole person and not simply as “Anna’s mom”.  All of these new people in my life only knew me as “Anna’s mom” & I struggled with wanting to be known outside of that role, too.

I also remember when, during the fall of that year, some of my close friends organized a birthday brunch for me.  This group met at a local café for some fellowship and conversation, while giving me the chance to slip back into who I was before cancer took over my life.

The gesture was heartfelt and appreciated, but the longer the meal went on, the more I wanted to escape.  The more everyone talked about their lives, their troubles, their families, the more I realized how different my life had become.  By the time I got home, I was deeply mourning my previous life. The awkwardness I felt while trying to find common ground with these long-time friends was too much for me that day.

Anna’s experiences with cancer had changed so much for me, & about me.

My identity was no longer what it had been the previous year, & I didn’t have the time or energy to reflect on these changes.  I didn’t want to admit how hard it was to talk with my mom-friends whose daughters were Anna’s age, hearing about the new adventures & challenging of their parenting journeys.

But, as time went on, I adjusted and embraced this new identity of mine.  Being known as “Anna’s mom” felt good; it meant so much more than being “Kate’s mom” or “Ethan’s mom”.  Being “Anna’s mom” was special, because Anna was so uniquely visible to the world around her.

My previous friendships changed, but many continued.  My conversational awkwardness with parents of typically developing children eased as time passed.  I found ways to stay connected to my mom-friends, even if the experiences of our oldest children seemed so very far apart.

Mostly, though, I made a whole host of new friends.  I enjoyed the relationships that Anna & I developed with her doctors, nurses, therapists, & teachers.  Even though our connections often began with me as “Anna’s mom”, many of these people came to call me Sara because our relationships developed into friendships.

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The fall that Anna was in 6^th grade, I began substitute teaching in our local school district, having been a middle school teacher prior to the beginning of our family.  My reputation with the educators in our district started to shift from being “Anna’s mom” to being a co-worker (who happened to have a wide array of experiences under her belt).  But for many of them, I was still “Anna’s mom”, even if I was there as a substitute.

I wasn’t quite aware of how deeply my identity was connected to Anna & her life, until she passed away suddenly & unexpectedly in December of 2018. 

Although the doctors never found scientific evidence linking her final swift illness to her prior experiences with cancer, I will always suspect that Anna’s treatments played a key factor in her death 4 ½ years later.

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Losing a loved one is hard.  Losing a child is very hard.  Losing a child whose life is medically complex is very, very hard. 

But, being a parent of a medically complex child is very, very hard & we learn early on in our children’s lives how to do hard things.

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After our family made it through Anna’s memorial service & all of the preparations that were involved, & the initial waves of grief did their damage to me, the reality of my new life started to sink in.  My husband went back to work.  Kate & Ethan went to school every day.  Everyone else’s life was filled with the things that were there before.  But not for “Anna’s mom”.

I was shocked the morning that Anna died by how swiftly her myChart account was locked.  I had simply wanted to see if her flu test results had ever come back, but was faced with the stark reality that Anna’s myChart was no more.

I was also shocked the morning that Anna died by how swiftly her school account was disabled.  I had simply wanted to see how she did on her math test earlier in the week, but was no longer given access to anything related to Anna’s academics.

As the house emptied in the mornings, I was faced with long, unfilled days.  Gone were the weekly therapy visits.  Gone was the communication with teachers and aides at school.  Gone were the appointments & logistics.  Gone were the daily tasks involved with caring for Anna … g-tube feedings, keeping track of oral eating, medication schedules, monitoring homework, spending time together while the more active kids were burning off some energy.

At Anna’s memorial service, there was much “we’ll still keep in touch” & “let’s get together sometime when you feel up to it”, but in reality, this was just talk.  Within a few weeks, I found myself lost, without purpose.  Once before, I had found myself in a similarly isolating experience, but during that time the days were filled with more people & tasks than seemed reasonable.  This time, my main connection to many of the people and activities in my life was gone.

During the early months of 2019, I found myself seeking out daytime friends who would join me for long walks, & looking for good books to read when my body wasn’t up to the energy needed for those long walks.  But these daytime friends were few, & often different from the friends with whom I had been close in other phases of my life. 

Mingled with my grief at losing my oldest child was the grief of losing everything & everyone that was connected to that child.

Of course I missed Anna, but I also missed seeing her therapists, her teachers & her aide at school, her doctors and nurses, her classmates and their families.  Since Anna was our oldest, most of my mom-friends in the community were parents of Anna’s classmates.  Time & circumstances hadn’t allowed me to create these kinds of friendships with the parents of our younger two children.  Life was lonely.

And yet, life had taught me that I can adjust, that my relationships with others will change, & that I can do hard things.  It just took a long time, & plenty of opportunity to rest, heal, and think.

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The fall after Anna died, I began substitute teaching in the middle school in our district again.  Although I had ventured back into a few positions in our district in the spring of 2019, I didn’t feel comfortable entering Anna’s school at that time, not only for my sake, but also for the sake of her teachers and peers.

As a middle school teacher at heart, I loved every opportunity to work with this age group.  Although the teachers first knew me as “Anna’s mom”, it didn’t take long for them to call me by my name & interact with me as an educator, instead of a parent.

The kids were a little different, though.  I enjoyed the chance to interact with all three grade levels in the building, but found special joy working with some of Anna’s peers.  Most of them knew that I was Anna’s mom, but only a few would talk with me about her, which was fine & appropriate.  I was there to teach them math, or science, after all.  However, a couple of instances struck me at the time and I will probably hold the memories tightly as the years go by.

One of Anna’s beloved friends in her special education circle was a sweet, caring boy on the autism spectrum.  Although this kiddo had difficulty communicating with others, he developed a special attachment with Anna starting in 2^nd grade when she returned to school.  As a substitute, I often worked as a special education aide & helped in the classroom for these very high needs students.  I never really knew if John knew who I was, other than just another teacher in the room.  But, one day, he looked me in the eyes and said “Anna”.  In that moment, he affirmed for me that a part of me will always be “Anna’s mom”.

On one of my last days working prior to the COVID shut-down, I was able to work in a 7^th grade math classroom.  Not only was this where my experience and passions lay as an educator, but I was teaching kids I had known since they were in pre-school.  I had been in the building enough by this point to assume that most of the students thought of me as a teacher, possibly even “just another substitute teacher”.  However, after I had been helping a group towards the end of one class, a boy called to me “Thanks, Anna’s mom!”  For these kids, I suppose that’s how they will forever know me.

I had the realization recently that with the way this pandemic centered school year has gone, I will probably not work with these students, Anna’s classmates, as a substitute teacher in the middle school again.  I doubt I will work with them when they enter high school next year, either.  I will miss them & the memories they elicit for me.

My identity has continued to evolve in the years since Anna’s death.  Each step of this journey has formed me in its own unique way.  I know that I will continue to hold Anna close to me as life goes on; she helped make me into the person I am today.

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Online resources to help you or another in the grieving process:

Ele’s Place

What’s your grief?

What do I say to a grieving parent?

For more of Sara’s personal blog click here.