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Posts from the ‘Writing’ Category

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.

Hands

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

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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 Pexels.com

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

presence.

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.

 

 

 

Dan Immortal

Immortals
They say we are what we are,
But we don’t have to be,
I’m bad behavior but I do it in the best way,
I’ll be the watcher (watcher) of the eternal flame,
I’ll be the guard dog of all your favorite dreams,
I am the sand in the bottom half of the hourglass (glass, glass)
(Ooh)
I try to picture me without you but I can’t
‘Cause we could be immortals, immortals
Just not for long, for long,
And live with me forever now,
You pull the blackout curtains down,
Just not for long, for long,
We could be immor- immortals,
Immor- immortals,
Immor- immortals,
Immor- immortals,
Sometimes the only pay off for having any faith,
Is when it’s tested again and again everyday,
I’m still comparing your past to my future,
It might be your wound but they’re my sutures,
(Ooh)
I am the sand in the bottom half of the hourglass (glass, glass)
(Ooh)
I try to picture me without you but I can’t
‘Cause we could be immortals, immortals
Just not for long, for long,
And live with me forever now,
You pull the blackout curtains down,
Just not for long, for long,
We could be immor- immortals,
Immor- immortals,
And live with me forever now,
And pull the blackout curtains down,
We could be immortals, immortals
Just not for long, for long,
We could be immor- immortals,
Immor- immortals
Immor- immortals
Immor- immortals
(Immortals)
Source: LyricFind
Songwriters: Andy Hurley / Joe Trohman / Patrick Stump / Pete Wentz
Immortals lyrics © Walt Disney Music Company

Op-Ed on Palliative Care

Janet Landis

In March of 2018 my son died after years of hospitalizations and procedures to treat his neurodegenerative disease. Often it still feels unreal that he can be gone. I am a nurse and for 20 years, I was Dan’s nurse. Sadly, the last months of his life were very difficult and I wish that could have been different.
Serious illness impacts more than 90,000,000 people in the United States. In almost every case they could benefit from palliative care. Unfortunately, many do not receive it until late in the course of their disease. Easing suffering is at the heart of palliative care. Palliative care teams are made up of caregivers from medicine, nursing, social work, and chaplains.  Some of this is due to the idea that it is “end of life care.” Hospice care, by definition, is care provided to an individual in the final 6-12 months of their life. Palliative care can be used along with ongoing curative treatments for an illness. People who can benefit from palliative care include those with cancer, congestive heart failure, respiratory diseases, Alzheimer’s and neurodegenerative diseases including Parkinson’s Disease, and ALS. You probably know someone with a serious illness who could benefit from palliative care.
Access to palliative care, particularly in rural areas, is limited. Only 17% of rural hospitals with fifty or more beds report having palliative care programs. In an effort to increase access to palliative care and provide education for medical professionals, a bill was introduced in the House of Representatives called the Palliative Care and Hospice Education and Training Act (PCHETA), H.R. 647 on January 17, 2019. It passed unanimously on October 29, 2019, and now goes on to the Senate for consideration. The bill had nearly 300 co-sponsors and strong bi-partisan support. It aims to improve care for patients suffering from serious illnesses by creating programs that would train palliative care providers, educate patients about palliative care benefits and expand research in the field. It has received endorsements from 54 national organizations including The American Heart Association, Susan G. Komen Foundation and the Visiting Nurse Association of America. The bill will provide funding in three key areas; workforce training, education and awareness, and enhanced research. The Center to Advance Palliative Care found in a 2011 poll that virtually all respondents agreed it is important that patients with serious illness and their families be educated about palliative care. This bill would help to accomplish that.
In the last nine months of my son’s life we spent 286 days in the hospital. Even as a medical professional it was difficult to know when to ask for palliative care. By the time Dan chose it, his health had declined to the point that he needed hospice care. His goal was always to come home, no matter what was going on with managing his disease. Each successive hospitalization tested his strength physically, but even more emotionally. His homesickness caused him much more suffering than his physical illness.
I now know that all of his symptoms could have been managed at home, and we could have had valuable, precious time together in the place he valued most. H.R. 647 would have helped prevent much of my son’s pain. We need more palliative care providers, better access to palliative care and more education about what palliative care really means so that the type of suffering my son and our family went through can be prevented for other families coping with the immense challenge of caring for a loved one with a serious illness.

Dan and I during one of his last hospitalizations.

Anytime

IMG_3308Any time of day

and any day,

Memories of you fill my mind.

Tears, still so quick to spill,

rivulets of love and pain.

Busyness is it’s own addiction,

life goes on without you.

I hug your tree,

its’ branches your arms,

inhale days past,

the sweet smell of you.

We are separated,

by the realities of time,

and being.

And so, we are also,

inseparable.

You are alive,

always,

woven into and through me.

Emotion can transcend the limitations,

of this temporal space.

Love,

written somewhere in our DNA,

unites and reunites us,

until I know no more;

until I know not when;

until the mystery,

and the majesty,

of our human connection,

is revealed.

 

 

 

 

A little over a year

It’s a little over a year,

love,

I thought it would be getting easier.

It’s strange how food loses its flavor,

how everything can seem so empty,

of meaning, of purpose.

How could I ever think my writing

could sum up how we were,

Mother and son, nurse and patient,

closer than anyone can imagine.

I understand why those of us left behind

consult oracles, psychics, ouiji boards.

Anything that might give a sense of

the  presence of our loved ones again

seems acceptable,

even things completely irrational

when separated from our loss.

And your siblings, so much time lost

with them,

but no complaints, not ever,

from them, from your step-dad.

That is how much we all loved you

and love you still.

In some way we all felt it was worth it,

you were worth it,

and so much more.

All the laughter you brought us,

all the joy.

We were, we are, so blessed

to have known you, to have had you in our lives.

Sleep sweetly my baby, dear brother, dear friend.

We loved you then, we love you still,

and your love may be what heals us.

 

Nightmares

All of you and all of me were together.

We were both on gurneys

separated

something wrong with our hearts.

At least I could see you,

talk to you, even as the doctors talked over us.

Before they put us on the stretchers

I could hold you, smell you, feel you close.

my dearest, I thought it took courage

for us to walk through your life

so full of pain from procedures

and operations.

But I am a coward in the face of your loss.

And while nightmares in sleep end with waking,

the nightmare of your loss just goes on and on…….

Breaks

Tonight my coworkers asked me,

As they always do,

“When do you want to take your break?”

“I don’t usually take them.” My standard reply.

I don’t say why. That some nights the tears are too close.

That I love the memories despite the pain they cause,

Because they are of you. Because they bring you near again,

And the pain of the separation is even worse,

Than the pain of remembering.

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