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“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.