What dreams?

What dreams trouble your rest, dear heart?

Are you dreaming of the spinal tap, so long ago? The endless needle sticks for labs and iv’s? Of the Lifeflights, the ambulance rides? Are you dreaming of the surgeries and the long recoveries? The gasping for breath, reaching out your hands for air you could no longer pull into your lungs alone?

Wait. You sighed.

Maybe you are at Disney World, still able to walk. Or are you in your go-kart? (The one your brother always stole) Are you feeling Albert and Annie snuggled near you in your beds? Three darling, little ones tucked into a corner bedroom. Or maybe you are sleeping on Melissa’s shoulder on a long car trip, or being pushed on the swings by Megan? You could be sitting on your Dad’s shoulders as the fireworks in Estes Park cascade over the mountains. Or maybe you are gaming with Kevin or you know he is guarding over you in your room at the hospital?

What dreams weave through your slumber?

I lay awake and wonder, awash in memories, keeping watch.

Defying gravity


The tide of your breath rises and falls; the ventilator, the moon, that gathers and  releases it.

Another night in the hospital. Me by your bed, gazing at you and remembering, as you lay sleeping and dreaming your dreams.

Memories come to me in silken images. You; in navy, rubber rain boots, the blue power ranger to your brother’s red, your sister’s yellow. You; walking and jumping in puddles, or sitting in your older sisters’ laps for story time and snuggles.  You; running to the end of the field and back on cool summer evenings, a price for burping at the table.  Ring tone radio, Make-A-Wish, school and yoga.

There is so much to tell of your life my dear one. Everyone loves you for your sweet disposition, your biting sarcasm, and your kind, kind heart; for your whimsical art, your love of superheroes (favorite – Wolverine), and wicked gaming skills; for the light of your smile.

It is our last night in the hospital sweetheart.  I will finally keep my promise to take you home after this long, difficult year. You have chosen not to come back to this place where we’ve spent so much of your life. I am humbled by your courage, in awe of your strength.

Your birth into this world was at home, surrounded by your family. Without knowing, we knew. No hospital. Too many months there to come, too many years. And now, again, no hospital. Your decision this time, but too soon my love, too soon.

Twenty years times twenty would not be enough time with you. My Daniel, my beloved child,

Engraved on my heart is the feel of you in my arms; as a baby, a toddler, a teen and a man. Always my son, always, my son. Defying time, defying space, defying gravity.


And still there is beauty.

The blue white light of the moon slowly fading.

as the warm, yellow sun rises.

Walking out with my three companions,

the snow freezes my toes.

Thinking of my mother’s face,

reflected in those of my sisters and brother,

Her love carrying us like a wave,

into another day on this precious earth.

I bow my head in gratitude,

for all that has been given to me,

and as she would say,

for all that has been taken.

About grief

It is a grief that feels too deep for tears, and yet they fall anyway.  It is a grief so long in coming, so often felt around the edges, but now drags down the dawn into a seemingly endless darkness.  One moment agony, another apathy.  In this empty house where everything is a reminder of his absence, I pace, purposeless.  Here where he used to run across the grass, where he jumped on a trampoline, where we read him bedtime stories and kissed him goodnight.  Now he waits, in a hospital an hour away, where he has spent too much of his life, to decide how the time he has left will be spent.

We know the depth of the ocean.  We know the distance to the moon.  We know so many things,  but the enormity of this grief, this sorrow, seems as unknowable as the size of the universe.  It is equal to the infinite love I felt the first time I saw his precious face.  None of it can be quantified, the love or the loss.  There is time yet, to be with him, as he struggles for breath, the machine breathing him.  It is that time, that nurturing I might still provide, that sheds a light on this endless night.