The pull of the undertow

The weight on every muscle

Exhaustion in body and mind.

Turn; look; go deeper;

Dig gently into the heaviness

And there is a child

Curious, sometimes lost

Under layers of accumulated experience

But still there,

With the excitement and wonder

Of the fresh and unencumbered mind

Reaching out a hand

If I remember to look for it.

The joy of you

Learning to fish.

I want to remember the joy of you.

Kissing your sleepy face in the morning,

Holding you when you got hurt,

Snuggling, with your brother and sister,

The four of us warm and at peace.

Singing with your aunties,

Going to the library,

Holding hands when we crossed the street.

Yes, our journey was hard.

Yes, we were battle scarred.

But what a love we had, my darling, what a love.

Three years ago

This was your first full day home,

And I’m circling the house like a phantom,

Looking for you everywhere.

But where are you?

Dear love, heart of my heart,

I cannot breach our trust.

But the pain, the pain you went through,

I had to watch,

Because you are my flesh, my bone.

I would not let myself look away from it.

Would not let you go through it alone and unwitnessed.

Now you are gone.

Gone, gone, beyond my reach.

Gone to where you were before that perfect day of your birth.

Before I first felt you move inside me.

I must feel this, I must.

For how can we, you and I Dan,

Help the multitudes of the grieving,

If I do not let this feeling in?

Every hug, every kiss, every mischievous smile from you, residing in the cells of my body.

Even with the too many moments you almost left me,

Before you really did,

I knew our time was limited. And the day you died,

I bathed you, took out every foreign object they had implanted in you to keep you alive.

And then, I kept myself from ripping open the bag they put you in,

The bag they zipped over your precious face and body,

And I didn’t scream “NO” though I wanted to with every fiber of my being.

I didn’t fall on your lifeless body and say “No! You cannot have him!“

I let them take you. And now all I have are memories and ashes.

Three years ago you were still alive and home.

I kept my promise and brought you home.

Suffered with you as diarrhea, uncontrollable, soaked your favorite leather chair the first time we tried to sit you down.

And would I put you through that again? Just to have you here with me?

Yes, I’m ashamed Dan, but yes.

Diarrhea is an inconvenience at worst, easily cleaned and tended to.

But a chance to have you here with me again….

a chance to see your smile,

To hug you once more…..

No, I couldn’t do it. Because I love you and could never make you suffer again.

Just know that I miss you,

That I look for you in every breeze, every tree, the bits of you still here.

In your shoes, your clothes that I cannot give away.

And I am glad your suffering is over, even if it makes mine so hard to bear, now that I must do it alone.

I can no longer push it down, to be the willing receptacle of yours, as I try to cheer you up, to make you laugh.

There is snow today and hard rain my love. Hard, hard rain.

And I miss you.

Journal Entry Excerpt 11/8/17


“I don’t know how to cope with the anger and the pain. I do know that the legacy my mother and Andrea left for their grandchildren is love. Love in the face of the darkest times. I believe in these two women who chose to let love guide their lives, their choices. Love was always the bedrock of their beings. I ask them for strength all the time now. They are my guiding angels.”

11/26/2020 The strength, integrity and compassion they had helped me through some of the most difficult times I experienced as a mother. I owe them both amends that I can no longer give and yet I feel their forgiveness, deserved or not, like a radiant beam of warmth and light.

Thank you Andrea and Margaret, for all that you gave, all you that taught, and the boundless love I still feel on this journey through motherhood and grief.

For Albert

Dark eyes to drown in,

sweet new face, with tiny features.

This little creature who came from me.

Trembly, open wide to the new,

squinting at the brightness of it all.

Sweet son of my heart,

first in birth,

thirsty for words, for action, for movement.

You climbed and ran;

you spun in endless circles,

spiraling delight, laughter, exuberance.

You create worlds in images,

imagine impossibilities into being.

You love what is,

and forgive what is not.

Glowing from before your first breath,

with mirth and precocity.

You trickster,

vast as the sea,

and as beautiful.

The Other Ones

My other children say

why can’t you live for US now?

You spent so much time away from us and we never complained

because we understood.

But we are living and he is gone.

And how do I explain?

You don’t need me like he did.

You are healthy and whole. You need me so little,

and he needed me so much.

You are NOT the “other ones”

You are not less important because you need me less,

You are just as beloved and precious.

And yet that still cannot take away how much I miss him.

And the fact that it felt like it was me showing up,

who made the difference.

Looking at loss

How do I learn to look upon loss with the eyes of compassion? With tenderness?

When loss has felt like being thrashed and left broken on an endless road?

Fragments of memory, cut by explosions of rage from fabric crafted with love.

Love, a life raft and a drowning, a tiny tree standing defiant and resilient against an inferno.

Loss, incoherent, chaotic and unpredictable

Sew me back together and trim my ragged edges with blue satin so I can wrap myself in it and find some comfort from the cold. Something of beauty as a lifeline in the darkness.


You seem so far from me now,

Sweet Dan,

And Grief is such a heavy gift.

Reach out your hand,

As when I first touched it,

When you were new to the world,

Five tiny fingers curled around one of mine.

Or when I held it as we descended the stairs with your brother and sister,

into a new life, a new home,

And a new family.

Or stretching it out, holding a fish

As a dolphin leaped to take it,

Filling the air with the sound of your laughter.

So many times, through so much joy

and so much pain, our hands were entwined.

You seem so far from me dear Dan,

And I am reaching out,

To wherever your spirit now abides,

Praying you will take your hand

And wrap it once again in mine.

A Story Slam Draft


My son Dan was born on September 10, 1997.  I was working as a nurse at the time and decided I wanted to have a water birth at home. I remember being in the warm, soothing water after Dan was born and looking down in wonder at this pink, blonde, baby boy, whose eyes were grey-blue except for one small brown triangle in his right eye.  We always joked it was the one thing he got from me.

Dan was an easy baby, who plumped up quickly from nursing.  I started to wean him when I was pregnant with my daughter.  It was during this time that Dan began to get sick. He had his first bout with pneumonia before the age of 2.

When he was 2 ½ years old, after many tests, Dan was diagnosed with Ataxia-Telangiectasia, a rare, genetic neurodegenerative disease with no known cure. Literally translated, Ataxia means wobbly walking and telangiectasia is a word that describes the spider veins that make the eyes look bloodshot. The shorthand for the condition is A-T.

As Dan grew he went from walking on his own, to needing to hold your hand, to needing a walker, then a wheelchair, then a power chair.  When the kids were young we would sometimes eat dinner out on our porch and if the kids burped loudly they had to run to the end of the yard and back as “punishment.” Dan took pride in doing his best to run just like his brother and sister.  He always wanted to be treated the same as they were.  It was hard for me to do that at times, being a worrier by nature, and I would often jump to help Dan at the smallest signs of distress.  He once said to me, with his wry wit, that I had EMHD, and when I asked, “What is that Dan?”  His reply was, “Excessive Mom Hovering Disorder.”

Our Dan loved all things Marvel, but especially the X-men.  Wolverine was his favorite superhero because of his tragic backstory and his sarcasm. Dan used to wear a bracelet with the Wolverine quote, “I’m the best there is at what I do, but what I do best isn’t very nice.”  Wolverine embodied for Dan that even when the odds were against you, you could still find some ironic humor.  When we were given a trip to Comic-Con, Dan went as Wolverine, and he looked just like him.  One of the things we loved to do together was to go to movies; Marvel, DC, and Dragonball-Z were favorites, and even as the pieces of equipment required to get him there grew, we made it to the theater and would sit together in the handicapped section.  We often took selfies with our 3D glasses on to send to our family. We loved watching the challenges the heroes faced, and the courage they found, often through incredible hardships, to overcome them.  They were some of the happiest times we had together.

Dan was often sick because kids with A-T typically have an immune deficiency, and his mouth, nose and lungs had no protection from viruses and bacteria. When he was 10, he had to have a feeding tube placed in his stomach because he couldn’t eat enough to sustain his growing body.  As he entered his late teens, his hospitalizations became more frequent. After a trip to Disney World, where I was running a marathon to raise money for A-T research, he got a pneumonia/flu double hit that kept him in the hospital for most of that winter.  His lungs were now damaged to the point that he required oxygen all the time. I remember him asking me “why can’t they use a 3D printer to make me a new set of lungs?”  His questions were so often poignant and the answers so often illusory.

Dan received all his care at A.I. Dupont/Nemours Hospital for Children.  Almost everyone there knew Dan and he was loved by everyone who met him.  But Dan hated being in the hospital.  Each time we had to go back it tested his resilience and his spirit.  He missed being at home in his “Dan-cave” where he had a flat screen TV and a Playstation for his games. He loved God of War, Dragonball Z and Lego Marvel Superheroes. Even more, he loved his brother and sisters, his step-Dad, and our three dogs.  Home was always his favorite place to be.

On his 20th birthday Dan’s doctor told him that his best chance of getting home would be to have a tracheotomy, a surgery to make an opening in the windpipe that is necessary for breathing support.  It was either that or going home with hospice.  When the doctor left the room and it was just Dan and me, he looked at me and said, “Mom, I’m not ready to die.”

As it turned out, Dan decided he would get the tracheotomy. True to his nature, on the day of the surgery as we stood nervously around him, he smiled at us and as they wheeled him away he turned his head and called out “Yabba, dabba, do!”

After the surgery, we spent many more weeks in and out of the hospital.  In January of 2018 we were told that Dan’s only remaining option was to go home was with hospice.  On one of our frequent drives to the hospital Dan had said, “Mom, I don’t think they can fix me,” and sadly, it seemed he was right.  Dan’s homesickness was making his life increasingly difficult and pushing his resilience to its limits.  At the time, two things that were keeping him going, getting home and the upcoming release of the movie Black Panther.  Everyone we knew, including everyone at the hospital, tried to get a copy of it but were unable to do so.  Instead, on his final day as a patient there, his nurses, doctors, and therapists lined up along the hallway linking their hands above his head to make an archway of arms that led to an auditorium.  The hospital had arranged a special showing of Thor Ragnarok just for Dan, our family and the staff who knew him best.  They wanted to send him off with a celebration.

We had hoped that when we got home we would have a few months together.  As it turned out, we had two weeks.  When we finally did get him home, the nurses and I buzzed around his room setting up the equipment and fussing over him. In the midst of this, Dan called from his hospital bed to his older brother Al.  When Al came to his bed, Dan said, “Come closer.”  When Al took Dan’s hand, Dan repeated, “No. Closer.”  Al leaned further in, with a concerned expression on his face and in his eyes, and he asked, “What it is buddy?”  Dan looked at his brother with the impish twinkle in his eyes we loved so well, and whispered, loudly,  “Get these crazy bitches out of here!”

After Dan died, his nurses allowed me to help with his his bath.  I had given him his first bath as a baby and I wanted to be a part of giving him his last.  We were home, just as we had been for his birth, just as Dan had wanted it.  Bathing him, touching my dear child, now so still, I removed all of the devices that had been placed in his precious body; the tracheostomy tube, the stomach tube, so representative of the struggles he had been through.  It felt sacred; a consecration of a life of love, courage and perseverance.

We dressed him in his favorite Dragonball Z t-shirt and a pair of shorts he often wore. I lovingly washed and brushed his hair.  His room was quiet and still without the sound of the ventilator, the feeding pump, and the suction machine. All that was left was waiting for the funeral home to come for his body. Dan and I were alone, as we had been so often during the course of his life.  The television was on and by some strange coincidence, X-men Origins: The Wolverine, came on.  As the images began to play across the screen, I sat down by his side, took his hand in mine, and together we watched it, one last time.


Sitting with loss


photo of person holding green leaf
Photoby Daria Shevtsova on

You are my dreaded companion,

hollowing me with a razor-edged scoop,

until I am ragged, and raw.

You are a purveyor of pain and delight,

that you weave into an umbilicus,

a connection that must be cut,

severing us from one another.

But are we?

This scarred and broken body,

gave birth to you in a sacred, crystalline moment

and is still imbued with your sweet, sweet


Darling, and dreaded,

companion that I long for,

tell me the story we learned upon awakening;

that love and joy and sorrow and loss,

are all the same.

That as I clasp your hand in mine

and press it to my heart,

you are already letting it go,

and your echo is all that remains.




%d bloggers like this: