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Dreaming Dan




I dreamed of you again last night.

You were a just a boy,

eyes bright with promise,

and hope.

I hugged your small body to mine,

then held you out with my hands to look at you,

to take in all that I can no longer see

in my waking life.

I told you how much I miss you,

and asked when I could see you again.

You did not answer,

You just smiled at me with that

impish grin I know so well,

and my heart swelled full

with all the love I feel for you,

and the fathomless gratitude,

for the grace that twined our lives together.

It is you


It is  rage,

Smothering, choking;

It is  night,

Drawing down light;

It is fear,

Haunting empty hours;

It is loss,

Permeating every moment;

It is  suffering,

Seared into memory;

It is tears,

Tasted on the cheek;

It is words,

Wept and sung;

It is moments,

Clung together;

It is setbacks;

It is hope;

It is resilience;

It is time.

Precious, precious time.

It is you:

Teaching me,

Trusting me,

Forgiving me,

Loving me.

It is you,

and it is you,

and it is you.

Last Rites

You lay before me, so still

Skin pallid, and lips the blue of twilight.

Your face inaminate,

No quirked eyebrow or mischievous smile.

Your absence is still incomprehensible

In the light of this terrible morning.

I kiss your cool forehead,

Thinking of the trials and turmoil,

Of  this path of pain we travelled together.

When everyone left, it was always you and I who remained,

to weather the storms of illness, or some new loss from your traitorous genes.

And here we are again my love.

I always said I would do anything for you,

From love, and for steadfast presence in all the difficult moments.

So I begin this, knowing only that it is a testament

Of my love for you.

Slowly, I bend to reach the basin,

Warm, soapy water slipping through my trembling fingers.

Washing your skin, tenderly, touching every scar.

Removing the tracheostomy tube, and the g-tube you hated so much

Wanting every artificial adjunct to your life

Out of your tortured body.

I would not, could not leave you now,

In these last moments together, that will haunt me for the rest of my life.

I will know that we had this time,

That I held you once again, as I did on that morning 20 years ago,

When we were still innocent and unknowing,

And our joy was untouched by sorrow.


Maybe if you are very sensitive,

Mourning must tear you apart,

And fling the pieces far away,

Leaving you broken for a time,

Difficult, defensive, vulnerable, fragile,

Until enough time passes

for the ground of your being to

Become fertile again in darkness,

To draw its’ precious nutrients into your heart,

To fill your empty breasts that still ache with remembrance,

So that you may start to rise,

To stand, tenuously at first,

Then stronger,

To take the first steps on the path,

To find yourself again.

The Empty Well

Grief is an empty well,

where the voice of the beloved echoes

but cannot be answered.

Grief is the silent sky,

after lightening cracks open the heavens,

and thunder shakes the earth.

Grief is grasping,

for something you can no longer hold,

that is just out of reach.

Grief is heavy,

austere and grim as a Puritan zealot,

who sees joy as sin.

Grief, harsh teacher, bitter companion,

who steals the treasure of hope,

who must be endured, the consequence of immeasurable love.


For Dan

I don’t know how to say goodbye to you my dearest

and I don’t know how to greet a life without you.

Dew fogs the grass as the pink light of sunrise

floods through the windows.

I listen for the sounds of you in this still morning

the quiet of your absence surrounding me.

You are everywhere and nowhere,

waiting in still and silent moments, patient with the

futile busyness that keeps my pain at bay.

My sweet and gentle boy,

how we laughed and cried together at the absurdities

and cruelties of your life,

and at the frailties of your human keepers.

In weaker moments I beg you to return to me,

selfish, I know my darling, to ask

knowing the brutality of your final days with us,

the torment and tumult of those precious hours.

And still, you come to me, like a breath, like a pulse,

as the sighs and tears move through me

and I remember how you protected me

your facile, fragile mother,

and let me sleep beside you, let me hold you one last time

in the clinical light of the hospital monitors.

Another day without you.

Bitter, the absence of you, the taste of loss in my mouth.

Missing you so it feels my soul will break apart.

Just a box of you on the mantle in the living room,

a trace of you, but not.

I don’t know yet how to mine the beauty of your life,

to find the traces of silver,

threaded through the bedrock of your suffering.

That, at least, is over now my love.

The mourning dove sings from the rooftop,

while crows caw and chase away the night.

The memory of you cuts deeply,

etched into the landscape of my being.

Another day without you has begun.


Wanting mind

The wanting mind, always present, always asking

for things, so many things.

Intricately entwined in our DNA, our genes,

part of survival, instinctual, incessant.

Comprehending it is relatively simple,

but hearing it, the ceaseless nagging of it,

wears away at any state of contentment.

That is it’s job, to keep asking and asking

for things it can and cannot have.

And ours to deny it, to soothe it like a troubled child

and to sometimes say “Yes,” this time, “yes.”


IMG_2163.jpgSome grief requires solitude.

An interval to withdraw from social norms and attempt to heal in silence the breech carved through you.

Words, speech, even listening is hard. The effort required to perform simple tasks, to risk reaching out, even to your most trusted loved ones is unbearable. Because they know.

They know your heart is ripped open, gushing sorrow. Their compassion and love make it even more real.

For their hearts are also broken. They too have lost a beloved.

Love, how the ache of it’s loss can overpower you. The longing for it so deep and impenetrable. The absence that will forever be a companion for us now.

A part of me that was good and true, has vanished, but the memories of it, of you, Dan, are all around me.

Please forgive me my dear ones if you find me mute. My body needs time to regenerate, to weave a soft spot to fill the hole promised to me all those years ago. You know that I love you, that I know you are also in pain and with what remains of my tattered heart I am with you.


My SuperDan


Dear heart, my Daniel, born at home in a stock tank filled with water, you nestled into our family seamlessly.  Tucked into bed with me, your brother beside you and your Dad snuggled against him, you gave us one of the most beautiful moments of our lives.

And now you are gone.

Right after you were born your sisters had head lice and we spent countless hours picking nits out of their hair as you calmly sat in your car seat nearby.  Just as they loved your brother Al, and later, your sister Annie, they held you and you melted  their  hearts.  Lovely and gifted young women, even then, with far too much emotional stress to cope with.  But holding you brought them peace, as it did for anyone who knew you.

And now you are gone.

I watched you learn to walk, observed (amused) as you potty trained by watching your brother stand up to pee.  You wanted to be like him and yet you were so divinely your own.  Toddling after him (he was impossible to keep up with), sitting in Megan or Melissa’s lap to hear stories, to cuddle – always such a cuddle bug.  You gave all of your sweet self to us.  You guarded over your little sister like a lion cub, playing with her and soothing her when she fell and skinned her knees.

And now you are gone.

Every teacher, every nurse, every medical person who cared for you over the short 20 years we had you, fell in love.  How could they not?  You were made of love and it shined from you like the warm sun on a spring afternoon.  Your strength and bravery humbled us all.  You never complained and you never wallowed in self-pity.  You just went courageously from one challenge to the next, as if to say, “Bring it on bitches! You can’t break me.”

And now you are gone.

When Kevin and I were married, you walked down the steps with me, holding my hand.  You spent countless hours video gaming with him, playing scamper, telling jokes at dinner, and running to the edge of the field with your brother and sister when one of you burped at the table.  You and Kevin, your second father, who read you stories at bedtime in those tender moments before saying goodnight.

And now you are gone.

There were so many people who treasured you. Your grandparents, aunts (ring tone radio – check it out), uncles, cousins (Noah and Jonah helping you body surf in Lake Michigan) and especially Matthew Rush, your brother-in-law, who gave you such an indispensable gift by gaming with you over the internet those nights in the hospital, where you often felt so isolated and alone, after he put his children to bed, never mentioning his 4:30 a.m. wake-up call to get to work, never playing down to you.  Just talking “trash” like gamers do.  It was especially hard that you died on game night.

And now you are gone.

I fight the urge to smash every piece of medical equipment that remains in the house, the machines that both sustained and restrained you.  I am angry that A-T took you from us so soon.  When you were gone from those moments of pain and struggle, I removed each artificial device from your still body.  I wanted you wholly yourself again.  Humbly and with deep gratitude, I gave you your last bath and put on your favorite Dragonball shirt.  I promised you, my love, my heart, that I would bring you home.  Born at home, it was your deepest desire to return here before leaving us.

And now you are gone.

The agony, oh Dan, the agony of the silence, of your absence, feels unbearable.  If the depth of our grief is in any way a measure of the love we felt for you, of the unbreakable bond we shared, then know that with every beat of our hearts, with every cell that makes up these bodies, we cry out for you to return.  Just one more hug, one more joke, one more eye roll at my constant singing to you.

And now you are gone.

Be at peace darling one, and know that you are as close to us as our breath, and you will see, through the eyes of those who loved you, every precious moment of this life. We can never really be separated, we are a part of each other.

Yes, you are gone, but always, always you remain here in our hearts.  Our superhero, our Wolverine, our Dragon Dan.


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