​"The cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness. Although the two are identical twins, man, as a rule, views the prenatal abyss with more calm than the one he is heading for (at some forty-five hundred heartbeats an hour). - Vladimir Nabokov, Speak, Memory
 
Sophia has ups and downs daily, sometimes hourly...she can barely catch her breath wrenching, choking on her own secretions, her body slowing down running to pause.
 
Every one of her last breaths wrapping themselves around my heart, like a vice in my chest tightening, and tightening...my free flowing tears lubricating the sense of loss that grows with every moment closer. I can barely catch my breath in-between 'change'.  All either one of us can do is breathe...
 
I am a mother witnessing her child die.  Labor, glorious labor…it’s three stages of agony with a beautiful outcome. Witnessing your child die is a cruel form of labor with an outcome no mother wants.  It’s laborious in its truest, rarest, rawest form.   The pain and agony shifting from uterine and cervix to chest and throat…the contractions becoming more intense the closer death seemingly gets. 
 
In child birth, we experience early labor, active labor and transition.  Parenting a child with a life limiting illness we go from cradle, to bedside, to grave. 
 
I’m at bedside…vigil.  The sunshine currently streaming through the windows creating a halo above Sophia’s head, teasing me with a heaven on earth I only wish we knew. 
 
Forty five hundred heartbeats an hour dropping to twenty seven hundred…fifteen breaths a minute dropping to eight, the cradle rocks…

​My stomach churns with worry, my mind races with uncertainty, my heart beats deep with anticipatory loss.  We are in hospice, my beautiful daughter finding peace in a still unknown and unfinished journey…
 
C.S. Lewis in his A Grief Observed reveals that “No one ever told me that grief was so much like fear.  I am not afraid, but the sensation is like being afraid.  The same fluttering in the stomach, the same restlessness, the yawning.  I keep swallowing.”
 
I have been living in grief for so long, I naively thought I would be prepared for being with dying.  But I’m not.  And I am pulling on every resource I have to be present, to bear witness and remain an advocate for my daughter.
 
I’m raw, vulnerable, tender in spots I never felt before; collapsing into sobs that rack my body hours later.  I have foregone the makeup and any futile attempts to normalize what suffering looks like.  I can no longer hide my tear filled eyes or wipe the sadness from my face amid the deep deep sense of helplessness that has washed over me.
 
Roshi Joan Halifax writes, “The ultimate relationship we can have is with someone who is dying. Here we are often brought to grief, whether we know it or not. Grief can seem like an unbearable experience. But for those of us who have entered the broken world of loss and sorrow, we realize that in the fractured landscape of grief we can find the pieces of our life that we ourselves have forgotten.”
 
I can only hope that on the other side of my sorrow I’m able find the pieces of my life that I have forgotten.  That I will have the strength to open my eyes, to practice humility, and heal what right now seems unbearable.