Elena Picture Day outfit


The Never-Ending Story

March 12, 2021

I know I have been absent in the pages of this cherished blog.  For many reasons, but mostly because, over the course of the last 18 or so months, words have poured out of me.  I had to get our story, my story out of me.  The flood gates opened and before I knew it, 250 pages telling the good, the bad, the ugly and the entirety of my story start to “finish” was, well, finished.  Since then, I’ve been sitting on it, pondering my options, considering the immense vulnerability this would require, and having, at equitable intervals, much confidence and much (MUCH) self-doubt. 

While all this internal dialogue was happening, I began to have this bubbling of realizations emerge from within me.  I had filled many of the pages of my story with feelings and confidence over the “resolution” of my journey.  Over the years, I have put in so much freaking work to wade through the muck of what began that day in November and the millions of repercussions that trickled into my life and my psyche since.    Having written much about the last nine years, I’ve only recently begun to lack confidence in my emotional and mental resolutions.  I had written myself into those pages to be ok.  Resolved.  My trauma, my healing, my next steps all tidied up into a neat little package.  Lately, that hasn’t felt true.  My story, I’m understanding, will never be neat, tidy, or most of all, gulp, resolved.

Over the course of the last month or two, I’ve experienced an unexpected tsunami of grief.  A few mostly uneventful but contemplative scenarios were set forth in front of me that left my head spinning.  One, a minor medical procedure Elena had turned out to be incredibly painful….for me.  And second a benign event that offered me a look into our future in caring for Elena (which I mostly avoid at all costs).  What these two combined experiences were successful at doing, was opening this great chasm of grief inside me, spilling out into the pages of my journal.  A couple weeks ago, following Elena’s procedure I wrote this:

“Like so many times before, I sat in a sterile hospital room steeling myself against all emotion.  Swallowing lump after lump in my throat, my eyes burn with tears, as I stare at the fluorescent lights above begging my them to dissolve themselves before spilling down my face.  It’s a scene replayed every damn time I’m in that hospital, every damn time I spend an hour detailing Elena’s current issues with doctors in hopes of some relief or resolution.  Just make it back to the car, Emmalee.  That’s what I tell myself.  Don’t fall apart in front of them, Emmalee.  Make it to the car.  Don’t make it about you.  Focus on Elena.  You’re almost there. 

I always make it to the car, thankful for a vast and dark parking garage.  I slide into the driver seat as the sobs finally are freed.  I follow the signs for the exit through eyes blurred with tears.  This is my routine.  I give permission to feel, to release, and be angry.  Because every time I’m angry.  I’m mad that this is my life.  This is her life.  That I have to do this.  That I have to watch this.  That I have to see my daughter subjected to pain, to prodding, to injections, to surgeries, to tube feedings, to grueling therapy, to endless medications, to diapers, to having decisions made for her always and forever, to wondering how she feels about something, to answering questions for her, to picking out braces and wheelchairs and standers and strollers, to this life that we live together.  It isn’t fair.  It’s cruel.  It’s impossible.  It’s heartbreaking.  Every damn time.  I cry for all of this.  Every damn time.”

In the weeks since I wrote that, I have been grappling, almost incredulously, at my inability to pull myself together. Usually I’m able to get it out, purge the pain and move on.  But a week later, I cried through lunch with a friend.  The next week my best friend called and I broke down immediately in sobs.  I couldn’t fill Chad in on my day without crying into his shoulder.  Why was I constantly crying?  Where was this coming from?  Why couldn’t I just choose joy?  Get a grip, Emmalee!

As if the light switched back on, I realized my old companion grief was standing right in front of me.  I was in the dark because I didn’t want to acknowledge that it was there.  I was afraid of falling back into the grief pit.  I was trying to outrun what is, in reality, a part of me.  There is this constant incongruence in my life, joy and grief, each a magnet trying desperately to pull me to one side or the other.  My recent days have felt like one of those ambiguous optical illusions that hold two different images in one.  Do you see the duck or the rabbit, the two faces or the vase?  Each day, two images, one person.  One that consciously chooses to see the joy, the abundance.  And the other that, at times, is utterly devastated by overwhelming grief.  Both exist together, within me.  Both create a frustrated wrestling back and forth.

Call me Captain Obvious, but somehow I only recently realized this….that my grief is forever.  Like forever, ever.  For whatever reason in my head, I believed with the “acceptance” of my life and my ability to feel at peace with it, the grief would fade or only lightly and delicately, with the best manners, reveal itself on occasion.  It had, I guess, never occurred to me that with every new phase of Elena’s life, with every new transition, with every new adaptation, with every new realization of what will never be, with every stark difference between our reality and everyone else’s, it always be my companion.  A forever friend that will take my hand and make me remember that my heart will remain broken, forever. 

Maybe I had some understanding of this concept in the last few years.  Perhaps I shouldn’t be so surprised by this and that when the wave comes, it hurts all the same, but I am.  It catches me off guard every time.  And every time it takes me a minute to turn the lights on and recognize what grips me.  Ohhhhhh yeah, ‘sup grief you’re back and you’re annoying.  Then resumes my internal struggle between living my life with joy and gratitude and giving recognition to the pain that exists there too.

Part of my healing continues to be learning to reconcile these together, to accept both, to understand that the opposing forces will always be opposing but I must learn to exist with and acknowledge both, because both are entirely deserving and both are entirely, me.  When I allow myself to acknowledge it, feel it, let it swallow me, it gives me a feeling of validity.  That my life, my experience, my feelings are real and worthy to be mourned.  Grief in, cruel, ironic way, affirms me.

There was a quote on Brene Brown’s Instagram page recently, “Grief requires witnessing.  The need is for someone to be fully present to the magnitude of their loss without trying to point out the silver lining.”  I’m totally a silver lining girl, but it’s also necessary for me to remain honest about the challenges of my life and allow myself room to mourn the losses I experience daily.  The grief can also serve as a baptism of sorts for the routine that my stride can fall into.  It washes away the parts of me that pretend everything is normal and even and monotonous, reminding me of the importance of my loss, my challenges, what will never be.  It’s a constant perspective shift.  By sharing my grief with others, I feel more authentic and honest, which I believe creates connection.   I’m not always ‘such a good mom’ or ‘so strong’ or ‘so inspiring’.  I’m human and I fall apart.  I lose it in my car.  I want you to bear witness that my road is not one of overcoming a trauma, a major life obstacle.  It’s overcoming obstacles every single day.  It’s a perpetual cycle of me falling apart and pulling myself together.  When I feel as though I’m falling apart, and I have to navigate with a brave face, it reminds me of all the others out there who must do the same.  Better yet, it prompts me to send silent prayers for those who cannot even muster a brave face, who can’t make it to their car in the parking garage, who can’t smile for the picture.  Grief can offer itself as a connector, not always an isolator.  Valuing both the abundance and the grief, both pictures of my life, seeing the ‘duck’ and then also looking for the ‘rabbit, doesn’t create a ‘resolved’ ending, but rather authentic opportunity to navigate whatever lies ahead. 

Does this seem exhausting to you?  Because I cannot begin to tell you how exhausted this makes me or how ridiculous I feel for thinking for one moment that my chapter of grief and pain and heartache were mostly a thing of the past.  But I guess that is what this life is for, living and learning and preparing yourself to do better for what comes next.  And, as for what does come next, I don’t know.  I have a story that I’m still figuring out how to tell.  When I do, I’m certain it will be the most authentic version I can offer. 

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This is Elena. Our Light. You can see all the goodness and joy that shines from those deep blue eyes. She loves sneezes, yawns, industrial toilet flushes, automatic paper towel dispensers and The Star Spangled Banner. Music is her everything, specifically Moana, Frozen (really all Disney), Queen & Taylor Swift. Nothing makes her squeal quite like swimming, fast boat rides and her two brothers in trouble. In addition to her megawatt smile, Elena reminds us to cherish the smallest of victories, to live in the present, and to daily dwell in a posture of gratitude for every breath and every blessing.  

More About Our Story

I’m Emmalee, an ordinary gal born and raised in the Heartland. Wife to Chad, and Mom to Elena, Calvin & Turner, I spend most my days ridin’ dirty (literally so much trash) in my minivan carting kids to and fro. When I’m not being a Momager, I excel at self-care, cooking gourmet meals my kids won’t eat and deep-diving all the feelings. Most days, my attitude is gratitude, just taking life one step at a time.

Emmalee & Elena

Meet The Gals