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Partly Sunny

Piper should be turning six today.  The age you proudly use two hands to reflect your years.  This isn’t at all like we imagined it would be.  What can a birthday continue to mean after death?  For me, it still means everything it did before. Because you can’t have death without first having life, any more than you can lose something you never had.  This day signifies the beginning, and the beginning was beautiful.

On this day six years ago, Piper first became ours and we became hers.  I had gone into the hospital early to monitor my blood pressure.  I still remember the Christmas tree earrings my nurse wore when she told me I needed to be induced and we would not be going home without our baby.  It was just three days before my due date, but Nelson and I were so anxious, thinking we weren’t quite ready, expecting we had more time.  That feeling would find its way back to us the day she died.

From her first breath at 2:01 p.m., Piper looked like magic. She still looks like magic in my dreams and in the memories I guard. As every parent knows, when you first glimpse your child’s face, biology notwithstanding, the wonder of their creation is unfathomable.  It’s very much like a wish coming true. 

But wonder and wishes aside, today is full of sorrow too.  The absence of giddy birthday excitement is unmistakable. For the second time, December 18 is not a day to celebrate growth or childhood milestones. Instead we work extra hard to keep the what ifs, whys, and crushing unfairness at bay.  It’s an unchangeable hurt. 

Piper earned only four candles in life, and already two in death.  Even though we imagined her future the moment she was born, we only got to experience the beginning.  Even though we painfully permit ourselves to imagine her at six, she was only ever four.  Four years, 10 months, and one day.

This time last year, the reality of her death had not fully set in.  Fourteen months later, so much has changed.  We spend a lot of time reflecting, motivating, and evaluating life in the wake of death. I read somewhere that parents who bury a child become ancient, and I think that’s true.  We’ve experience life out of order, seen the end first, survived our worst fears.  We love differently and fear differently.  Even normalcy is different.  Maybe most changed is how we feel about time itself.  I never want what is next more than I appreciate what is right now.  

Olive and Harlow are our “right now” and they are increasingly the motor to our boat. Recently Harlow was the weather reporter for her classroom.  As many of you know, that was Piper’s favorite “job” in preschool.  She loved it so much she regularly forecasted at home.  As usual, it made me both happy and sad to see Harlow enjoying something as Piper had before her. When I asked Harlow to tell me about her job that day, she said matter-of-factly, “it’s partly sunny.”  I laughed and thought, well isn’t that the perfect metaphor for our life.

We are a family that can appreciate partly sunny.  Our days are partly hopeful, partly despondent.  Partly full, partly empty.  Partly content, partly restless.  Just when you think you should pack up the picnic, clouds part and you catch a rainbow you would have otherwise missed.  The only real constant is that grief is love, and it never ends. 

Each of us holds a place in our heart that is Piper’s alone. We take refuge in our belief that Piper goes on, that there is a place for all the perfect souls like hers.  Time and space separate us now but one day they won’t. Until then, our eyes will search for her, and our ears will listen for her.  So much of Piper remains, and this day is still hers.  

A Matter of Time

What can be said of a day like today? Our perfect girl has been gone from this life for a year now. One. Whole. Year.  Four complete seasons, 365 entire days. Try as we’d like to stop it, the sun kept right on rising and setting, the planet kept turning.  

It still feels as impossible as it did that day.  I can remember where I stood in the hallway on Oct. 5, when Piper’s hospice nurse called us aside to say she was getting close, it would be just a matter of time. She spoke slowly and carefully. She knew emphasis was needed because every parent’s instinct is to stop listening at that point, to believe they are wrong. It was the second time we were given a timetable for Piper’s death, and if it’s possible, it hurt even more.  She guessed two weeks, and she was right.  On Oct. 19 at 7:49 p.m. Piper moved with indescribable grace from this life to her next.  Soon after, I stood in the exact same spot in my hallway, and cried from a place I never knew existed, while her body was gently taken from our home forever. 

The immediacy of grief can be like standing too close to a building.  You are only taking in a few bricks among the millions that make up the structure. Each day of this last year we stepped farther back and began to see more of the whole.  Every step brings new revelations and emotions.  In some ways it has taken me this long to understand that she really died. Someone said to me recently, “I love Harlow stories.” I laughed, then immediately held back tears, because that sentence made me realize there will be no new Piper stories, or photos, or silly videos.  It’s part of the impossibility of death. 

I’ve given hours of thought to the mutable context of time.  We lament times past, and we worry over times to come.  Time can be your friend, it can be your enemy, but really time is arbitrary.  What matters, and what distinguishes our response, is togetherness.  When we are with those we love, we can never have enough time.  When we are apart and longing for those we love, time suddenly becomes endless.  On rare occasions we don’t notice time at all because we have everything we need in that moment.

The day before Piper died gave us one such moment.  Her Grandma was visiting that morning, and we all sat on the floor listening to Fiona Apple sing Across The Universe.  We were working on a craft (of course) and this particular project called for a song to match our work.  I remember moving Piper’s hand up and down, helping her glue glow-in-the-dark stars and planets against a poster board of space.  I still recall how dreamy and peaceful it felt to sit there with her.  I’m sure the whole project took all of 20 minutes, but I remember it in slow motion.  As a finishing touch, Neddy wrote Piper’s name in glue at the top, then covered it in her signature rainbow glitter mix, like she was a necessary part of the universe itself.  A perfect moment in both time and space.  It was so fitting, and it would prove to be her very last creation. 

Piper Across The Universe

We have persevered this past year for her, because of her.  While I’m proud to say we found the strength to survive this first year, it is also true that we still have a lifetime to go.  A lifetime of steps to take, and an ever-changing picture to make sense of.  Time – both too much and too little of it. 

My friend Joy sent me this poem last fall, not long before Piper passed away.  I remember reading it and feeling its truth even before I felt the reality of her loss.  I came across it again recently among the stacks of condolence cards, and it struck me again.  I can think of no better words to share today, no better words to accompany these images.  

’Tis a fearful thing
to love what death can touch.

A fearful thing
to love, to hope, to dream, to be –

to be,
And oh, to lose.

A thing for fools, this,

And a holy thing,

a holy thing
to love.

For your life has lived in me,
your laugh once lifted me,
your word was gift to me.

To remember this brings painful joy.

’Tis a human thing, love,
a holy thing, to love
what death has touched.
                                    — Judah Halevi

Love Letter

This past weekend, as we attended the celebration of life for another remarkable human taken too soon by cancer, Harlow quietly watched as family members shed tears while sharing memories and testaments of love.  It’s a scene you expect to find at this sort of event, but what I didn’t expect was my not-yet-four-year-old’s deft understanding of the situation, or her response to it.  Each time she saw someone wipe away a tear, she stood on her tippy toes, reached for the box of Kleenex on the table, and delivered the tissue to the person in need.  It was the sweetest gesture of care.  Without hesitation, she simply did what needed doing.  I can almost hear her thought process… if you spill you clean it up, if you hurt someone you apologize, if someone is sad comfort them.  And for each of us who received a tissue, it was an unexpected comfort.  That someone so young understood enough to perceive our pain gave me much to think about.  

In the midst of our heartbreak over Piper, I think we sometimes forget to acknowledge or fully celebrate Harlow’s magnificence. This is my love letter to our second-born daughter, filled with all the things I never want her to forget:  

Sweet Honeybird,

You saved us many times over.  When you were born you evened the score.  Before you arrived we joked that Piper was only daddy’s baby because no one could believe a blond-haired, blue-eyed girl could be mine.  I remember when the nurse said she could see your full head of dark brown hair, I just laughed, thinking it was impossible.  That was the first of many moments you would prove me wrong. You quickly became the chubbiest baby anyone could remember.  You were also the happiest.  You never gave us any trouble, at least not then.  You were friendly to anyone who smiled at you, but your adoration for Piper was always supreme.  

Three months after you learned to walk, Piper was given a death sentence, and normal life ended before it had really begun.  At 16-months-old you suddenly needed to become independent.  You were not yet steady on your feet and we were running ahead to catch Piper.  You barely got to know the people we were before.  In those hard days you always let Piper’s needs come first.  You seldom got your way, or an equal share of our attention, but you also never complained.  You gave her dependable reasons to giggle with your antics and budding dance moves. You were always a willing audience for her storytelling and teaching lessons, and a partner in crime for backseat scream-singing.  We loved the sound of your laughter in unison.  You continued to look at Piper as though she hung the Moon, even when she couldn’t walk, but you could. And that mattered. Your belief that she was a superhero reflected back at her like a magic mirror.  It allowed her to see herself as you did: invincible.  

I wish she could have been, because you lost a big sister like the world had never known.  I’m so sorry for all that was stolen from you, then, now, and into your future.  It wasn’t supposed to be like this for either of you.  You had Piper beside you only 32 months, and exactly half of it was spent fighting DIPG.

The day Piper died you were quiet, not asking for or even wanting our clumsy explanations. The sadness over our house was understanding enough.  Like so many troubling days before you gave us one less thing to worry about.  You kept yourself busy and calm.  Your hugs were extra-long, and you began to see the need for wiping away tears. 

I wonder if we appreciate enough how resilient you are.  Despite everything, you continue to thrive in preschool, make new friends, try new things. You tolerate us on the days our grief is overwhelming, and we are short-tempered or distracted.  You forgive everything.  I have to remember that your position in this is as reluctant as ours.  None of us ever wanted to overcome the loss of Piper.  None of us could have imagined burying a part of ourselves.  None of us knew we’d have to remember Piper the way you remember an eclipse, or a rainbow, because they are ephemeral.

As we say, Piper sent you a little sister to love so her legacy could go on.  Without prompting, you are already drawing the blueprints for your unique bond with Olive.  You look at her like she’s the most precious thing you’ve ever seen.  You tell her you love her morning to night.  Like Piper, you praise her everyday accomplishments like a successful burp or a reciprocated smile.  You insist on picking out her clothes, and you never hesitate to tell someone when they’ve been holding Olive too long and it’s your turn. You can’t hug her enough, but you have been accused of hugging her too tightly.  You love her completely, the way you love Piper still.  Olive’s arrival made Piper more present in our home than she had felt in nine months.  

When we are weary and wondering what the point is, or ask what good the future could hold, thank you for being the answer.  Thank you for reminding us to appreciate what we still have.  Thank you for understanding more than you should and still finding so many reasons to be happy.  Thank you for being our daughter.  There is no question you hold our lives together.  You are our bridge connecting the past and the future, and we love all that you are and all you will be.  

Namesake

Maybe it is a byproduct of grief, or just my nature, but I often find myself getting stuck on a single thought.  Something will come to mind, and I’ll toss it around in my head like a rock tumbler, over and again.  Exposing different facets, removing edges, until what remains is a softened version, something I can carry.

Lately I’ve been processing the idea of nine months. At one point in my life I believed nine months was a long time.  While it’s not insubstantial, what I marvel about now is how much can be contained within that timeframe.  Nine months represents the length of human pregnancy, and the life expectancy for a child with DIPG.  As if to mirror this life/death aspect, it has now been nine months since Piper’s death, and in this same month we welcome her new baby sister to the world.

It’s a complicated tightwire to walk, balancing the death of one child with the birth of another. Balancing isn’t even the right word, it suggests some method, but there is none to be found here.  More accurately, we feel suspended yet unsteady, crowded with all manner of emotions, tipping one way then another, but always generally forward. Because how could we ever expect to arrange in our hearts the life given and the life taken… what we have lost and what we have found? These sisters will eventually share everything except the same lifetime. Our home will always feel incomplete in that way.

Yet Piper remains a part of daily conversations, both spoken and felt.  She is a fixture in our heads and in our hearts. As soon as we learned we were having a girl we knew Piper’s legacy needed to be part of not just baby’s upbringing, but also her name.  A few different ideas went through the tumbler until eventually, one felt right:

Olive Noel Waneka

Piper is our little dove, and throughout history a dove grasping an olive branch has symbolized something of divine importance: peace. Piper came into this world on December 18, exactly one week before Christmas, and the word Noel is derived from Latin meaning “to be born”.  

Peace is born… and carried to us by Piper. What a lovely thought.  One I look forward to contemplating at great lengths while we get to know Olive, as we walk beside Harlow, and as we hold Piper safely in our hearts, forever.  

# # #

Lava Lake

August 2018
June 2018

A while back, at Harlow’s request, we visited the nature & science museum.  A place Piper loved, and a place we visited with her shortly before everything took a turn for the worst.  Without Piper to direct our exploration, we visited things that made us feel close to her.  That’s how we came to the Volcano IMAX.

When Piper wasn’t thinking about space, she was talking about volcanos.  The film was fascinating, and I wondered what questions and reflections Piper would have had for us afterward.  Harlow was so overcome by the spewing 3D lava and angry Earth sounds she resorted to sleep, and I imagined what words of comfort Piper would have given her.  In the documentary, the scientists were attempting to get as close as possible to a rare lava lake in Vanuatu.  They talked about how these beautiful, yet formidable places were sacred portals to the beating heart of Earth.  How despite the many threats they posed, they were important to study because they lead to answers found nowhere else.

In the months since Piper died, I have come to realize there exists a similar lake of fire deep in my heart, and facing it is both terrifying and significant.  It is my memory of the moment Piper’s heart stopped. The exact moment she left this life for the next. After watching her body fade and flicker, Piper drew a long and telling breath.  Her nurse, who had been standing behind us (literally and figuratively) took a stethoscope to Piper’s chest, as she had so many times before, only this time came the world-altering confirmation, “she’s gone”. Those most-feared words were already hanging in the air, but when she said them, it became so final.  In that moment, my lava lake was formed. In that moment, I felt far away from Piper for the very first time.  And with that feeling came an explosive hurt, as hot and blinding as fear, and as deep as sorrow.  After all our loving words and assurances that it was okay for Piper to go – I suddenly wanted to undo it – to breathe life back into her body at any cost for another ‘I love you forever’. It felt like we had been guiding her across a street, focused so entirely on her peaceful transition, that only when we reached the other side did my thoughts shift to myself, and realization that my heart was bleeding.  Hearing “she’s gone” was hearing a door close with a deafening bang.  Piper was safely inside, but we were left standing outside. Unable to walk beside her further. No one is ever really ready for that. 

This memory catches me off guard often – in the car, in public, in the sleepless night.  Cruelly replaying and repeating. Even now, recalling that moment is so disorienting and panic-inducing I don’t know if I should run from the pain or toward it, or if I have legs to run at all. It cannot be hidden or disguised any more than an erupting volcano can. Studying it has led to discovery of sorts too. I realize more clearly how abruptly our time can end. But also, that love is fireproof. I’m learning to see the memory of Piper’s final breath as something larger. Part of a process that built us all. One where what was gives way to what can be.  Made with life-forming components from within, so that in time, you stand on new ground. It’s a landscape that will forever bear evidence of how it was formed, but won’t always burn.

Because it’s not enough to remember the day she died, but all the beautiful days she lived.  Piper’s life was so much more than that final breath. And we are so much more for being her parents, even if loving her meant having to gently let her go that night.

Head to the Hill 2019 | My two-minute story

I’m here to represent the issue of pediatric brain cancer specifically.  In June 2017, after a rapid onset of neurological symptoms, my three-year-old daughter, Piper, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).  I had never heard of it, nor did I realize children could be diagnosed with brain cancer so young.  I certainly never expected to hear there was no known cause, nor proven treatments, nor cure for Piper’s diagnosis.  DIPG has always been, and remains, terminal at diagnosis.  Patients survive a median 9 months from discovery, fewer than 10% survive beyond 2 years.  Because of the tumor’s location in the brainstem, surgical removal is not offered. Standard of care is limited: immediate steroids to reduce swelling, and optional radiation to buy more time. Until recently, children with DIPG were not even eligible for clinical trials or offered biopsy.

We were considered lucky because Piper responded so well to radiation – enduring a total of 40 sessions requiring sedation each time – giving her the best possible quality of life until the tumor reached a point where making her comfortable with the help of her palliative care team was our singular consideration.  When it came to information, doctors could tell us only what was sure to happen because of the tumor, not why (biologically), or how to prevent it (scientifically).  We quickly learned the problem was insufficient research funding, and an unfavorable division of those funds placing pediatric cancer as an afterthought. After 16-months of fighting, we helplessly watched Piper lose function after function (but never cognition), starting with her walking, then her speech, her ability to swallow, smile, and finally her ability to breath.  She passed away at home last October, just shy of her 5th birthday, with more unfulfilled hopes and dreams than I could ever list.  

Although DIPG took everything from Piper, she inspired the world around her with an unbreakable spirit that only a child could possess.  But there was more to what she taught us than to remain positive in the face of adversity – she taught us we can, and must, do more for children.  I tell her story because she cannot, and because my hope for a cure did not end with my child’s life.  Today, tomorrow, and every day of the foreseeable future another family will be blindsided by a brain cancer diagnosis, and I urge you to do your part to change the ending for them.  It’s time.

* * *

I want to thank my wonderful friend, Lindsey, for encouraging me to take this trip to DC, and for speaking for me when I could not. Like all the advocates who participated, she had her own story to share, and every one of the 300+ stories needed telling.

I also want to aknowledge Representative Jason Crow (CO-06) and his team – particularly his policy advisor who I had the pleasure of speaking with. His office was professional, responsive, and compassionate to this cause. Earlier this month, in response to the efforts of many – particularly the tireless DIPG Advocacy Group – Rep. Crow co-sponsored H. Res. 114 which would recognize May 17 as National DIPG day and ask that this issue be considered a funding priortiy. Currently, Rep. Crow is the only Colorado member of congress to support this resolution. We still have much work to do.

Losing someone you love is hard

C. Roese Ramp Photography

Losing someone you love is hard.  It’s confusing, and exhausting, and nightmarish, and transcendent, and beautiful. Beautiful not in the sense that it’s good, but in that it allows you to remember the good and realize there’s still some left.  Death is surprising like that.  As I watched Piper fight cancer, and as I fell more in love with her with every day, I often wondered what would happen to that love when she died.  Would it fade?  Would it disappear?  Would it stop growing but still be mine, bounded on either end by her birth and her passing?  What would I do with all of it?  What would it do to me? 

As is so often the case, I was wrong about everything.  It’s like when Carrina was pregnant with Piper, and I tried to prepare myself for what it would be like to be her father.  Logically, I could think about what it might be like.  I could picture myself as a dad.  I could imagine what Piper’s face would look like.  I could try to predict what that bond would feel like.  But as every parent realizes, all of my planning was a bad placeholder for the real thing.  One cannot prepare for things like this.  Until it happens, there is no analog.

I’ve had a lot of cause to reflect on my love for Piper.  It’s been six months since she died.  What would have been her fifth birthday has come and gone without her.  I have 36,000 photographs on my phone, and she’s in most of them.  Each one records some moment of our time together.  Memorializing our family when it was still complete, often taking for granted that our wholeness was, more than anything, all we ever really needed.

Every now and then the universe reminds us to open our eyes.  To see that what we need is what we already have.  My reminder came shortly before Piper was diagnosed.  Carrina and I were in Chicago for three nights, and we brought along an old digital camera.  We sat down to our first meal together without kids in 3.5 years, and I snapped a photo. As I inspected it, Carrina wondered what else was in the camera’s forgotten memory banks.  There was a single video of me and Piper a few minutes after she was born.  She was laying on the warming table crying, and I was holding her hands, whispering to her. As I sat watching the video, I remembered what it felt like to see her, touch her, and hear her for the first time. I cried as I watched, reminded of these wonderful things.  

In a cruel twist of fate, 10 days later Piper was diagnosed with an incurable brain tumor.  Our lives changed in an instant, and she fought damn hard for 16 months.  We all did.

I think of that moment in the restaurant a lot now.  Of the sublime reminder of what I had before I knew I was going to lose it.  About how I had seen the reminder, felt its message, and heeded its call.  I think about how I wish it was just a reminder and not an ultimatum.  And then I think about my love for that little girl. How far and how wide it goes.  I think about what happened the moment she was born, how she opened her big blue eyes and saw me.  I think about how in the chaos of that moment, the room went silent for one second while I saw her soul.  I think about how all of my thinking, and all of my planning, did not prepare me for what it was like.  I think about the ineffability of what I felt.  It was as if a new and wonderful part of my heart had been unlocked.  It had always been there, but she showed me where it was and then made it her own.

Four years later, the terrible wisdom that followed Piper’s death has proven me wrong again.  All of that ruminating about where my love for her would go, and all of that worrying about what it might do to me, was a poor substitute for reality.  Even though she is no longer here, and even though I’m painfully reminded of this every day, my love for her has not faded.  It has not disappeared, and it is still mine.  

The truth is that I love her more.  I know precisely what to do with it.  And I know exactly where to keep it:  In the place she unlocked that exists just for her.  

That place can never be empty again, and it can never have too much.

What’s Next?

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Losing a child, no matter the circumstance, is a seismic event for a family.  Losing Piper to DIPG felt like the end and the beginning of virtually everything.  Like a natural disaster, it was total destruction and reduction, a low point, from which nothing remained, save a barely beating heart. There was no going back to what was before.

As we approach five months without Piper’s precious light, we resolved to rise from the rubble, gather up the pieces, and try to do what she would have done – – make this experience count.  We felt the best way to continue her legacy was to officially join forces with The Cure Starts Now, and the more than 40 chapters they have assembled worldwide.  By creating a Colorado chapter, we honor all that Piper was and continues to be, while shedding light on DIPG and the irreconcilable funding gap that has persisted far too long.

We remember her as a girl whose magnitude of character left you wondering how such a tiny body could possibly contain so much.  Even if you only met Piper once, you would recall how she made you feel, something she said, or the outfit she was clad in that day. She captivated everyone, she left a lasting impression.  She harbored a purposefulness, a sureness that made me feel she knew more than we ever will. 

She taught us all, and we hope this chapter allows those lessons to be carried on the same wind that carried her name across states and oceans while she battled, and beyond.  We hope the work we do continues to contribute meaningful change to the world of pediatric brain cancer, and that in the not so distant future, we will celebrate that hard-won cure together. 

When

As many of you know, Piper loved a good story. She could often be heard saying “once upon a time…”  Seems there is no better place to start. She would know.

Shortly after Piper’s diagnosis, she began asking for another baby.  I can’t remember exactly when she started asking for a brother specifically, but it had been an ongoing conversation for many months before she died. She wouldn’t ask “if,” but “when,” her brother would be here.  She explained repeatedly that she already had a sister – who sometimes drove her crazy – so she’d like to try a brother.  I explained repeatedly that it wasn’t like ordering a costume from Amazon. Babies took time.  Babies took effort and required sharing. Unsurprisingly, she remained undeterred.

As for me, it took nearly a year after first hearing the words “terminal cancer” to even consider the idea.  I was wounded and still raw.  The illusion that I was in control of my life had been taken away.  I was reticent to have any more of my heart exposed to a world I no longer trusted or understood.  

But Piper’s persistence was a force more powerful than fear. Our eventual decision to try again was not a reaction to Piper’s diagnosis, but a lesson learned from it.  In a way that only she could, she showed us that love, and those we share it with, are the only things that truly matter.  We decided that more of that – not less – would be our way forward.  

Tragedy shows the world for what it is, a place where wonderful and horrible things happen. Things can happen at any time to anyone.  No exceptions for those self-described as blessed.  No exceptions for good people, bad people, old or young.  Really, this has always been true.  It’s just easy to forget.  I find that when you choose to keep living and trying even after tragedy reminds you, you live in a truer state.  

But after several months, it seemed a baby was not in the cards.  We wanted so badly for Piper to know she would be a big sister again, to share some existence.  As the months grew more challenging, and Piper needed more and more of us, the idea faded from view.  Then, when least expected, it happened.  A reminder that good things can surprise you too. I like to imagine Piper took her persistence for a baby all the way to heaven, her first official request.  I like to imagine this was her gift.  Her way of saying “keep going, I showed you how.”

When baby comes in July, his or her arrival does not restore us to a family of four, it makes us a family of five.  Piper will always be our firstborn because children are not interchangeable, and they certainly aren’t replaceable.  Harlow is excited for the role of big sissy, but she will always be the middle child (and as a middle child myself, I say that as a compliment).  Our love for Piper will be our guide.  And just as Harlow does, baby will grow up saying her name.

Lost & Profound

Lost & Profound

“Others, fewer these... had desired reunion with something they couldn’t 
have defined, but which seemed to them the only desirable thing on earth.  
For want of a better name, they sometimes called it peace.”          
–Albert Camus, The Plague

Our search for peace and understanding is as recurrent as the number of seconds in a day.  I imagine this feeling – of having to consciously breathe – will not waiver for a very long time.  I wouldn’t expect it to. In simple terms, we miss her.  Constantly.  

Memories of Piper are the bookends to my day.  My last thought each night, my first thought every morning, followed closely by the acknowledgement of her absence beside me.  As I walk through the early motions of my day, the gaps fill in, the context refocuses, and I begin to feel the familiar hurt grab hold.

The wholeness that was present even as Piper fought (especially as she fought) has gone missing. Our love for one another was magnetic. She pulled the matter of our days into something that resembled structure, her presence was a constant force, and in turn our direction unquestioned.  We held tightly to our shared purpose.  Now, our souls feel lost. As if our physical bodies are left searching for the half of our hearts that died with her.  

The fact that living with what feels like a knife in my chest is survivable, but DIPG is not, is something I will never understand.  In these long days without her, some hours are kinder than others.  My thoughts wander in all directions like a forgetful bird from branch to branch… sometimes I land on agony, sometimes hopelessness, sometimes disbelief, sometimes numbness, sometimes stinging anger, and sometimes – briefly – peace.  

When I picture Piper, whole, in paradise, able to be the child she truly was, I do feel immeasurable peace.  It allows me to see around my own pain to the mercy that she suffers no more.  Although, some days I never get past wondering why she got sick at all… the odds, the smallness of a single errant cell, the ill-fated genius of our bodies.  I find peace in imagining our reunion, where she answers all the questions that weigh on me. I find peace in the archives of our memories, where I can recall exact moments and hear her euphoric giggle in my ears.  Watching Harlow develop into a simultaneously similar and distinctive personality brings me peace. The fact that Piper’s warriors still grow in number, still continue the momentum she built to raise awareness, to fund research, and to support other families, brings me peace. 

But through it all, the inconceivable missing and longing for her is always, always there, like a very heavy coat I can’t seem to remove.  It can’t be removed, because I’m still so cold. 

After Piper was diagnosed, I hated hearing that her death from DIPG was unavoidable, an eventuality I had to accept.  I could not bear to hear it, even if I understood it.  Now I feel just as hostile to the thought that I will never again in this life hold her, kiss her, or put her in another costume. I know it is so, I watched her light fade from me.  But the very idea seems impossible.  Like she’s only out of reach, not gone from this world. These are the thoughts that leave me feeling lost and directionless.  Because the world just feels so empty without her in it.  That life can and does go on will never feel right or just.

Piper desperately wanted to be five.  It seemed to her to carry an authority that four could only allude to. As we prepare to face what would be her 5th birthday without her, the age she assumed would promote her to grown-up liberties like not holding hands in parking lots, operating the oven, choosing to drink only “brown soda,” or maybe even inhabiting a house of her own, I can’t say I’ll be strong. I’d give absolutely anything to be planning her party instead of bracing for a typhoon of heartache.  Everywhere I look I see things she would have loved, or things we would have loved surprising her with.  No, I can’t say I’ll be strong on December 18, or December 25, or any of the endlessly hard days ahead.  But I can say I’ll keep seeking peace.

Knowing without question that Piper left this world better than she found it is perhaps the greatest peace this situation can offer.  Knowing that we were present to hold Piper’s hand through every trial of her life is strangely comforting too. When it comes to the profound grief of losing a child, time is no remedy, it’s merely a measurement. I could live a million lifetimes and still ache for Piper.  But I’m hopeful time will soften the edges of our hurting, until eventually our longing brings only warmth.

Arvada, Colorado, USA