Monday, February 29, 2016

#SOL16:My Husband, The Teacher

Rob Conferring with Students

Last night I opened an email from one of Rob's former students. He wrote,
Mr. Cohen is the greatest teacher I have ever had, and probably will ever have. He opened up my mind not only to literature, but also to so many other facets of life and academia. I truly view him as one of the most influential mentors in my life, and I am so grateful that we had the opportunity to correspond with one another throughout my high school years. Reading what you wrote about him thinking so fondly of me really has touched me. 

Rob taught this student 5 years ago. As he did with so many students, Rob kept in touch with his former students, mostly through email and texting, but also with some in person. One of the jokes in our family was that we could never eat out without running into one of Rob's current or former students.  Even when we were in a hotel in San Francisco one year, we were not too surprised to hear, "Mr. Cohen!" being yelled across a lobby.  Rob had that effect on others.

Last week another former student came to visit Rob. He was sleeping when she arrived and she sat and talked with him for close to an hour.

These students' words and actions have me thinking how Rob will live on in the many ways he has influenced others. It reminds me that the influence of teachers is formidable, beautiful, necessary. It reminds me that the matrices to gauge teacher effectiveness represent a low bar. Better we ask what influence on students' lives has the teacher had than what score on a single measure.  The single measure rarely matters.  The influence almost always does.

#SOL16: Guilt, Guilt, Guilt and the Möbius Strip

Ophelia (M.A. Reilly, 2009)

"There's something I need to accept," Rob tells me in halting speech a day ago.  Later he will add, "I need to get to the other side."

Outside today the temperature is spring-like. And I too have a yearning to move on.  For the last five months my son, husband and I have been focusing on getting Rob well.  For the last three weeks after receiving the terminal prognosis, I have been seeing to Rob's earthly needs as he drifts between here and somewhere else.  Taking care of him here at home is difficult and I am feeling so worn down from lack of sleep and the exhaustion that also comes with the amount of work it takes to care for him and most everyone who comes to visit while sitting next to him waiting for him to die.

Each day Rob tells me something about dying and in the last 24 hours these messages are very direct. Today, before our son went off to high school Rob told us he plans to die before 2:30 this afternoon--which is the time Devon would be getting out of school. Rob now seems to know that he needs to die to get to the other side but isn't quite sure how to do that. He is lodged mostly in another world.

After Dev is off to school with Jane who spent the last two nights with us (thank God for friends who know how best to help) and Rob's mother who is still asleep upstairs, I try to change Rob and find I just don't have the strength to finish the job. This undoes me and I sit in the big chair next to his bed and cry.


I am writing this because this is what dying at home is like. It is love and it is guilt. It is extremes. It is exhaustion. It is fear. It is terrible. It is grace. It is pain. It is uncertainty and certainty. It's also a great distance from the portrayal of death on the big screen or in fiction--when the camera zooms in to capture the painful, yet oddly beautiful end.  Rather, I have watched Rob come to terms with death and now desire death and not know how to achieve it. And I am wracked with guilt today for wanting my husband to pass on--not just for him which would ease the guilt, but if I'm being  truthful here, also for me. We need to end this misery--a misery that should never have happened, but did. And even as I say the words, I know how I will regret them--how I will regret even a second lost with this man.

"Each day I tell myself I will not look at you, and each day I fail. I can't not look," Rob tells me in a moment of lucidity this morning.

I can't not look too, I think.  Me too.

And that's the truth.  It's like we are caught on some odd Möbius strip. Non-orientable and yet we continue to move.

Sunday, February 28, 2016

#SOL16: Not Knowing


I think I may have forgotten how to be in the world. Since Rob was moved to the Step-down unit and then to the Palliative Care unit and finally home, my life has become increasingly insular. Mostly, I take care of Rob. Tonight I lost it. I made dinner for my family and then tried to sleep. I wanted Rob. I wanted him to do what he has done for 30 years, offer just the right comfort. And there in our bedroom I realized that he was never going to be able to offer what he so freely gave me again.

On Valentine's Day, Rob and I had breakfast together. He was able to get out of bed and sit at a table. I brought bagels with cream cheese and Rob ate all of his and half of mine. He sent me an e-card and personalized as he always have done with a brief poem.

A week later, Rob would no longer be able to hold on to who I am by name.

Rob at Christmas with our dog, Max.

Rob and Devon in the pool.


I have been looking through old photographs from when Devon was 6 months to a year. I look at the pictures of Rob and Devon and think about us at that time and how we could not imagine that Rob would be with us less than 17 years. How could that be?

I'm glad we didn't know. We lived so fully. Not knowing is so much more important that myriad of things we can say we know.

#SOL16: Afternoon Interlude

What's on your Fridge? (2.2016)

We're seated at my dining room table, when the woman from the care agency asks, "When was your husband's last bowel movement?"

A little more than 6 months ago such a question would have been unfathomable. Now it is nothing more than ordinary. This is what my life is like these days. Countless people from different agencies stream in and out of my home with fistfuls of paper that must be complete. They often inquire if I have a copy machine as the paperwork needs to be duplicated. They are caring, efficient, and very, truly sad for me.

I've grown too tired to laugh and oddly too numb to say much of anything. I mean what more is there to say after you have been told to display the DNR (Do Not Resuscitate) notice on the refrigerator.

"Where should it be?"
"You should have it openly displayed, like on your refrigerator. For the paramedics."

What paramedics? I think.

After the visitors are gone, I think about Rob and how he would have laughed at these invasions.  He always had a fondness for things that are irreverent.  Surely shit and resuscitation would fit that bill.


I am sitting in the black recliner as I write this. I have pulled it alongside Rob's hospital bed. If I extend the chair, it's almost as if I were lying with him in bed. Almost, but not quite.  I laid that way yesterday for hours.

Mostly Rob spends the day elsewhere. He sleeps a lot and when he is awake he is almost certainly experiencing a reality that is not shared. In his world there are lots of buttons to be pushed, levers to trip, flying to be done, guns to be requested, water from Philadelphia to be drunk. Sometimes he's a British Lord.  Most times though he is lost and scared and wanting to move on, especially at night.

It's strange, I think, to not be able to anticipate that man you have been married to for so many years.

Saturday, February 27, 2016

#SOL16: Dear Friends and Relatives

Marilyn HarrisonThis is a poem Rob wrote after he received an email from a friend/sister, Marilyn Harrison, last spring. I found the poem on his laptop and wanted to share it. Rob grew up with Marilyn and her sister Joyce in Brooklyn. Marilyn died from cancer on July 12, 2015. When Rob wrote the poem he had no way of knowing that he would be diagnosed with stage 4 lung cancer a month after Marilyn's death.

Dear Friends and Relatives

today, i'm stuck

an old friend 
has written an email—

not a friend exactly, something 
else, more on the order of
an almost sister
i never see anymore

my mother's best friend's 
oldest daughter, 
my age, my contemporary
& sick

progressed, she says

putting my affairs in order
in my own satisfying way

induces cascade failure,
a widening cataract of
incomplete stories
accelerated by gravity

a few days later, 
a phone call
& the rest of the story 
is out

yeah, we'll get together
i think, 
& about a month from now
maybe we will—
i'll fly out to san fran
and spend a few days
tracking  haunts
i've never visited
as if this accounts
for what's being lost
& then what?

i'll have to leave 
& we'll both know
i'm  likely not coming back 
save maybe one more time

but for those few days
we'll remember all kinds of 
childhood stories, tell ourselves
others that fill in blanks
with the kind of honesty
that comes with 
the clarity of finality—
and then we'll tell the rest
the ones meant to soften
the truths 
our lives no longer 
for occasional news
we'll no longer get

& though we'll mourn 
what never was
in those farewell moments 

i'll  turn away
from that all
to get on a plane
& fly home
to what i left to come here:
an ongoing life,
a wife, 
a son, 
& who knows what

while she'll have left here
all to go back home
& lie in the quiet 
down of a who knows when
forgotten morning 
too soon come

#SOL16: Heartbreaking Commonplace

Rob and Devon asleep at the hospital. (Feb. 2016) 
"I know that the thing I want is exactly the thing I can never get. The old life, the jokes, the drinks, the arguments, the lovemaking, the tiny, heartbreaking commonplace" (C.S.Lewis, A Grief Observed, p. 25).
Rob and Devon (1999)

It isn't the big things that trip me up, but rather the millions and millions of small, commonplace artifacts that trigger wave after wave of loss. Even now the loss is crippling and the one soothing grace is I can still touch him, talk to him, revel in the brief, fleeting moments when he is somewhat present.

The other day I watched as my son sat cross-legged in a chair next to his father's hospital bed and fell asleep resting on Rob's left shoulder. He slept like that for a couple of hours.

When I watch Dev with his dad, he always rubs one of his shoulders. The other day I asked him why and at first he said he didn't know. A while later he told me that it's because he's still warm there.

"His arms and hands are so cold."

There are millions and millions of stories we have made together. We are making stories now--ones Devon and I will carry with us to remember Rob.

#SOL16: Keep A Bower Quiet for Us

Afternoon Light (M.A. Reilly, 2016)
A thing of beauty is a joy for ever:  
Its loveliness increases; it will never  
Pass into nothingness; but still will keep  
A bower quiet for us, and a sleep  
Full of sweet dreams, and health, and quiet breathing.  
 - John Keats


We hide the process of dying, alongside our limitations to heal. It is hard to remember that dying is actually a natural process especially when the person dying is your husband. There is such a strong inclination to save Rob, to keep him living somehow as his oxygen levels fall. But this is foolish. Selfish. He would no more want to live the way he has been this last week than would I. His interest in writing and reading, in Devon and me, in the world beyond the end of his fingertips has waned. And Rob has been adamant about never being hooked up to a breathing machine.
It's February 10, slightly before 9 a.m. when Dr. Gallinson asks Rob if he would allow intubation of a breathing tube and Rob is quick to answer, "Absolutely not."   
David has just told us that the cancer in Rob's body has spread from his lungs and spine to his sternum, ribs, liver, and spleen and that he is too weak to receive Opdivo--a new lung cancer treatment. 
How much time do I have left? 
"A few weeks, a couple of months."
Rob turns to me and immediately says, "I don't want to be put in a box in the ground."   
This morning I am remembering this exchange that happened a little more than two weeks ago as I sit in the chair beside Rob's bed. Our home is quiet. The loud drone of the oxygen machine has been quieted. Devon has left for school. Rob's mom is upstairs still asleep and Rob's skin is sallowed and he appears closer to death.

I have been with him for the last few hours, well before the sun rose, and now he is bathed, the bed linens have been changed, and he is resting and restless, mumbling and as I lean in I hear him say softly, intently, "Get a room ready, God."

"You're ready to go?" I ask.


Rob 2.26.16

Rob has been telling me he is ready to go daily. Sometimes the request is couched in metaphor:
Help me to cross the river.
Sometimes the request is direct:
How do I leave here?
Sometimes the request is fanciful:
Devon give me my driving glasses. I need to fly the red car out of here.

And so I sit alongside him and tell him about the life we have. I think about how a love, like ours, shows itself through ordinary acts. I want him to delight in this as it is this I will miss most after he is gone: our conversations of everyday life.

I tell him that Devon's team won their match and now they are 10 and 4. The 'Christmas' cactus in the dining room is blooming. Who knew moving it from the living room would have such an effect? That after lots of stormy weather, it looks like we'll have a sunny day. I tell him it's okay to go to that room God has readied for him--that is where he most needs to be. I show him that outside the windows beside his bed, the birds are riotous. What do you make of that? I tell him I have saved his voice on my phone. I say, it's the end of February and the promise of spring hangs about us, restless like we are. This is a time for rebirth. I tell him Dev and I will be okay here and that we will love him forever. I say all this as I hold his hand, rubbing my thumb alongside the base of his thumb as he sleeps.

I hold his hand as he sleeps.
I hold his hand.

And I think, Love these days is more action than words, Rob--more actions than words.

Friday, February 26, 2016

#SOL16: Language

Toward the Light (M.A. Reilly, Massachusetts, 2014)


It's later in the evening. The bedside lamp shines soft against the blinds. Sometimes I can almost imagine that I am with Rob before the diagnosis, before the end was closing in. I watch as he angles one arm above his head and notice that he looks deep in thought. How many times have I seen that look?

And so I am surprised when he asks, "What language do you speak here?"

Or at least that's what I think he says. Partial lines, single words, sounds--these comprise his speech. And even when I understand the phrases, the context is often obscure, unknown.  The single exception is in times of high stress, such as when he feels pain. Then, Rob re-finds our common language. For example, a few days ago a nurse was finishing a procedure on Rob and it hurt him.

"Mary Ann!" he yelled. "Mary Ann."

I was so caught up in soothing him and hating that he had any pain that I failed to notice what Jack noticed. Rob was lucid, cogent. I realized he was right. Rob, Jack, the nurse, and I were engaged in a conversation.


A few hours later I watch as Rob takes the pencil-like sponge from my hand and uses it to simulate drawing a rectangle on the blanket that is covering him.

"Ten inches this way. Twelve inches that way. Ten more and another twelve. There. A screen. Now I can watch the game."

At a more cogent time, Rob told me to search for him at Star 50 after he dies. All of that day I thought about the language from Walt Whitman at the close of Song of Myself,
"...Failing to fetch me at first, keep encouraged,
Missing me one place, search another,
I stop somewhere waiting for you."
Very early this morning, Rob looked up at me and said, "I'm so glad you found me."   I look at him now asleep, his breathing a mixture of rapid shallow breaths and breaths with pauses so large you could park a universe. My husband is composing worlds to help him leave the place he is forgetting to get to a place he must soon go to.  A place, where he will wait for me.

#SOL16: Departing Visions

At the Crypt (M.A. Reilly, 2009)

When Rob asks my older brother, Jack, and me who the young girl in our family room is, we look at him puzzled. It's morning and Rob is awake.

"What girl?" I ask.

"Don't you see her?" he asks, pausing. "She was right there," he adds pointing to where Jack is standing in the family room.

Neither of us have seen the girl.  But here is where the story gets a bit strange. Departing or death-bed visions are not unusual. What I didn't know is that family members may also experience these visions.

Since Rob has returned home, I have seen a quickly moving, yet ill-defined woman cross my sight and disappear down the front hallway of my house several times. The vision happens very quickly, lasting no more than a second or two. At first I thought it was nothing more than eye fatigue. The last time though I had a strong sense of my mother that accompanied this flash of person. Each time it happens it occurs in the same spot. I am sitting in a chair next to Rob's bed in the family room when some ill defined movement compels me to look towards the front hall of the house. And in that quick glance, I think I see something, dressed in white, move out of sight down the hall.

Sometimes it is not with our eyes that we see.

Thursday, February 25, 2016

#SOL16: Hey Candy Girl

Rob and Devon on the shores of Loch Ness


"Hey, Candy Girl. You better move closer."
"Took you half-an-hour to get here."
"A half-hour?"
"Yeah. Move closer."

It's 4:30 a.m. and Rob's overnight caregiver needs help. I have traveled from our upstairs bedroom where I had been sleeping to our family room to find Rob restless in the hospital bed.  Since he has returned home I have not had a full night's sleep mostly because I first took care of him by myself and later because the night aides need my help to move him and now to change him. Each phase towards death results in new needs for all of us and the same persistent want.

Tonight I am Candy Girl. Yesterday, Rob asked his mother where the Queen went.

"She's taking the Prince to school."
"Oh that's good. She'll be back."

Even though Rob can only say my name at times when he is most vulnerable and feeling pain, he knows me.


There's an abundance of sadness here so thick and constant that I have little else to do but understand that I am mired in it and accept this. This acceptance is humbling. Yet alongside that pressing sadness, there is also something oddly beautiful. My husband in his movement towards another world is composing a new world in front of me. Now and then he invites me and others to enter that world. Now and then he demands entrance.  And it's an amazing world--one in which Rob seems to be busy tinkering with things as he turns handles, adjusts levers, opens windows, opens doors, transforms the off-white blanket that covers him into a video screen so he can watch the game. Even as he edges towards death my husband is still rooting for the Giants.

Earlier this week a chaplain came to visit and she told me, "Don't let this disease cheat you of this time with him."

There's such wisdom in those words.

Wednesday, February 24, 2016

#SOL16: Fissure

Light (M.A.Reilly, 2014) 
It's dinner time and a neighbor has brought us homemade Stromboli and salad. My brothers, Rob's mom, Dev and I are eating together. When I open the refrigerator to find salad dressing, I spy the bottle of Russian dressing on the bottom shelf and my throat closes. Closes. Tears well and I know I'm going to break down a bit. This is the way it is. It is the small, inconsequential artifact that is all Rob that undoes me most these days. I have been so busy caring for him, that only now when I chance his favorite salad dressing or some other silly reminder of our life, of him that I sense the enormous chasm his dying will create. Sometimes this happens while I'm driving. I'll have a flash of something we used to do and know we will never do it again and the feeling that overcomes me is so large, so heart-stopping and powerful that I don't cry, but I actually scream.

Loud. Continuous. Scream. And then I regathering myself and resettle.

I move through each day mostly in shock. I find eating difficult as my stomach feels continuously nervous. The kindness of others makes me sob immediately. I can no longer remember what happened the prior day and I find being busy with physical tasks offers the best respite, save the time I spend with Rob. I am with him while he is awake and then many, many hours while he sleeps, or  rouses for care. Sometimes this involves bathing him, feeding him applesauce, bringing him water to sip, helping him to change clothing. Other times we chat and I try to understand what he is saying. Many times we are just quiet. Now and then I read to him. The other night I read the first chapter from Joyce's A Portrait of the Artists as a Young Man. We laughed at the moo cow coming down the road and early in the reading he fell asleep.

I watch him while he sleeps. Run a finger along his hairline, softly brushing back his hair from his far head. Now and then I make images of him with my phone. On Valentine's Day, I recorded a two minute video of him. I have saved his voice on my phone but can't bear to listen to any of the dozen messages he left for me starting on January 11 and running through February 12--the last recorded message he could leave.

Even as I gather all of this and hold it close, I know none will fill that chasm, heal this fissure that has only begun to crack open.

#SOL16: Small Dignities

An Offering (M.A. Reilly,  Ringwood, NJ, 2.17.11)
I... I am watching you sleep 
It's the promise you've made 
What I find I can keep 
Oh I...want to swallow the moon 
Give a smile back to you 
Light your way
   - Melissa Etheridge 


These days Rob sleeps 21 to 22 hours for every 24 that pass.  So I find myself watching him sleep. He hates the oxygen that feeds in through his nose and now we use it only when he is fully asleep. A minute ago as I tried to fit it into his nose, he lifted his hand to bat it away. I apologized and removed it and he resettled.

Small dignities for the dying.

And perhaps that is the lesson he teaches me this morning as I watch him sleep.  It isn't the grand gestures in life that matter most, but rather the small dignities we afford one another.


One of the first things to be tarnished during a long hospital stay is one's dignity--one's self-respect. Most of Rob's doctors (and there were scores) attended to the patient well, but most only tangentially noticed the person. This was especially noticeable during rounds. So often it felt like my husband wasn't of much importance, but rather was merely the vehicle through which a lesson might be learned or a problem solved.

There were some wonderful exceptions to this: his oncologists for sure, our family doctor and an Irish doctor who met Rob one night in the ER and although he was not his patient, sought Rob out across the many hospital room transfers to do nothing more than converse. No doctoring of the official sort. He and Rob discussed literature and he gave a book of Icelandic sagas to Rob.

Dignity after 50 days in a hospital is frail thing. And it ought not be.

I am trying to remember that. The man lying in the bed a foot away is not a patient and he has wants that clash at times with the prescribed course.

My husband still has wants. He is not all need.
How beautiful.
How necessary.

Tuesday, February 23, 2016

#SOL16: When Words Fail


I was tired. So I lay down.
My lids grew heavy. So I slept.
Slender memory, stay with me. 
- Li-Young Lee, Mnemonic


After greeting Rob yesterday morning, I realized that he no longer knew who I was. Just 12 hours earlier we were holding hands and singing I Want to Hold Your Hand. And though I know the progression of the disease, the mix of drugs, and of course, the dying process, all contribute to his confusion, words fail me as to how best to tell you what this feels like.

Each day I lose him in ways I don't expect, as does our son.


When words fail there remains touch.  One of the startling things I have learned is that Rob recognizes me even though he cannot name me.  I'm stored in his brain in lots of ways.  He responds to the sound of my voice, the touch of my hands, and certain features that he has always liked (my eyes).  For now, I take solace in these ways of connecting.

Earlier this evening, the English Lord, a persona of Rob's that is fairly new showed up.  When I asked him if I was just some serving wench, he said in his crusty upperclass British accent, "More or less." My brother Jack and I were there and we both laughed and I leaned down to kiss me lord.

Even in this sorry state we find brief moments of delight. 

Monday, February 22, 2016

#SOL16: I Want to Hold Your Hand

The Love Letter (M.A. Reilly, 2014)


Sometimes I think the way Rob and I hold hands is its own form of Morse Code. A light squeeze means, Hello, I'm here. A firm squeeze suggests a strong definition of love. A holding on well beyond a 5-minute mark suggests a desire to heal. Holding hands while using a thumb to lightly rub suggests a desire to comfort.  For the last 6 months, we have learned new ways to communicate--ones that have arisen alongside emerging needs and drama. So it wasn't so strange that this afternoon while Rob and I were holding hands that we ended up singing a more ballad than pop version of The Beatles, I Want To Hold You Hand to one another.
And when I touch you  
I feel happy inside  
It's such a feeling 
that my love
I can't hide,
I can't hide,
I can't hide


Our song fit into an afternoon of song.  I had gone upstairs at noon to sleep.  The last time I had slept was Friday evening and I was dragging. An hour later I came downstairs and Jane was all laughter saying to me that "I just had to hear the sing along" they had going. And there surrounding Rob who was sitting upright in his bed were Jane, her husband, Robyn and my brother, Jack. Jane had her laptop open to YouTube and as one of them would suggest a song, Jane would quickly find a version of it, hit play, and the group would then sing--none of them actually knowing all the words. Rob was being dopey and the group was so very pleased with itself.


Love finds expression in the raw timber we have available.

Sunday, February 21, 2016

#SOL16: Small Moments of Grace

Rob at an Earlier Time


Watching the person you love slowly die is agonizing and intimate and oddly, it is also full of small moments of grace.

For the last few days Rob has mostly slept so deeply it has been a challenge to rouse him. Yet, since last night, he has been mostly awake seeing visions and hallucinating and saying goodbye. The hallucinations were mostly about modes of transportation: horse, jet, bus--that failed in some way.

"Get me my horse," Rob directs me, motioning with his hand at what I suspect must be a horse. It's 2:30 in the morning and unfortunately that task cannot be done.
"My parents are on that jet," he'll later tell me as he indicates to what I suspect is a jet in the sky. "It left without me."
Still later I see him poking with a finger in the air.
"What are you doing?"
"Checking the bus schedule."

My brave husband is fixing to leave, but can't quite do it. The horse can't be corralled, the jet left without him, and the bus is nothing more than a schedule.
Last night I traveled along with him inside a few of the hallucinations. His coordination is poor and he spends a lot of restless time picking at the covers. At one point he caught my face with his hand and looked directly at me and said, I'm dying. I could barely nod, yes.


Today he wanted to kiss me and sing with Jane and Robyn and Jack.  He was filled with such immediate joy.  Later when it was just us, he wanted to kiss again and tell me to live well with our son.

"Live. You understand? I want you and Dev to really live well."
"Yes, we'll live well.  We'll live with all you have shown us."
"Good, that's what I want.
"We'll do it brilliantly."

I want to savor these moments with Rob. I want to remember them, hold them to my heart when I no longer have him to hold.  

Saturday, February 20, 2016

#SOL16: Now I Wait

Some Pray Without Speaking (M.A. Reilly, LBI, 2010)

6 months to the day, Rob was diagnosed with lung cancer. Now I wait.

Family and friends have gone home or are here asleep in other rooms.  I am sitting next to Rob in the downstairs of our home.  This morning Rob was largely unresponsive.  After giving him water and talking with him he roused slightly. When the Hospice health aid came to clean Rob, she and I worked together to move him and to wash his beautiful and too scarred body. We changed the sheets and for the first time in ages he is wearing a plain white t-shirt instead of a hospital gown and he looks like my Rob.

But my Rob has suffered so much and the cancer is throughout his body and now it is time for that body to die--for this man to find peace.  About 2 p.m. Rob rallied a bit, became lucid, and said good bye to us. I whispered to him.  I told him it was okay for him to leave Devon and me. He gestured to his lips and I have never known the intimacy of a kiss like the one we shared.

"I'll read the signs you leave behind and find you in some parallel universe where cancer does not exist. I love you, Rob Cohen, so much. I'll love you forever." 

#SOL16: I Forget Rob is Dying


There are moments inside each day when I forget that Rob is dying.

I turn to tell him something. Or I'm reading the opening of a book, like H is for Hawk, and I wonder if Rob has read it yet. Or I'm preparing dinner and I turn to ask him if... My response at these moments is always the same: fast sick stomach riddled with surprise. Yes, surprise. The world beyond is held in suspension. For that moment I don't hear, smell, touch or see anything.  I just experience the bottom falling out of my stomach and the sick sick sickness that accompanies the shock.

My God, Rob is really dying. He is, really. Really dying.

As I begin to reenter my body, I notice each hand shakes.
And it is only by holding my own hands that the tremors calm.


I've decided that there needs to be some rules about dying.

  1. You are not allowed to be planning a holiday and five months later be planning your husband's funeral.
  2. You are not allowed to celebrate your 25th wedding anniversary and two days later your spouse is transported to a hospital where he remains for the next 50 days, before returning home to die.
  3. You are not allowed to leave a 17-year-old son to make his way on his own.
  4. You are not allowed to leave the earth before all those conversations you most need to have can be uttered.
  5. You are not allowed to die on your son's birthday, your father's birthday, or your brother-in-law's birthday, on February 29.
  6. You are.
  7. You are not.
  8. You.

Friday, February 19, 2016

#nf10for10: Representation

My collection of nonfiction picture books is somewhat eclectic and yet matters of representation rest at the center. Enjoy.

from Salsa
Argueta, Jorge. (2015). Salsa: Un poema para cocinar / A Cooking Poem (Bilingual Cooking Poems). Illustrated by Duncan Tonatiuh. Translated by Elisa Amado. Toronto, ON: Groundwood Books.
I love this series of books that Jorge Argueta has created. This is sure to be a favorite with the children. An ultimate how-to book. You and your students will love making this salsa recipe.

Burleigh, Robert. (2016). Solving the Puzzle Under the Sea: Marie Tharp Maps the Ocean Floor. Illustrated by Raúl Colón. New York: Simon & Schuster/Paula Wiseman Books.
I have enjoyed many other books that Burleigh and Colón created.  The two bring us a picture book biography is of Marie Tharp who is credited with mapping the Atlantic Ocean floor. This title was released 1.12.16.
The Stone Thrower

Richardson, Jael Ealey. (2016). The Stone Thrower: A Daughter’s Lesson, a Father’s Life. Illustrated by Matt James.Toronto, ON: Groundwood Books.
This picture book biography of African-American football player Chuck Ealey recounts his early years growing up in a segregated neighborhood of Portsmouth, Ohio and how he became an incredible quarterback, with an unbeaten record in high school and university, yet he would never play professional football in the United States. This book will be released 5.1.16.
from When the Slave Esperança Garcia Wrote a Letter
Rosa, Sonia. (2015). When the Slave Esperança Garcia Wrote a Letter.  Illustrated by Luciana Justiniana Hees. Translated by Jane Springer. Toronto, ON: Groundwood Books.
When I read this opening to the book blurb, I knew this was a book I would want to read. When I saw it was being published by Groundwood Books, I pre-ordered it. The historical importance of this and the art makes it an important text and one that needs to be included in school libraries. This book was published October 13, 2015. Here's the blurb:
In 1770, the slave Esperança Garcia bravely penned a letter to the governor of Piauí state, in Brazil, describing how she and her children were being mistreated and requesting permission to return to the farm where the rest of her family was living. Before she wrote her letter, Esperança Garcia lived on a cotton farm run by Jesuit priests, where she learned to read and write — a rare opportunity for a woman, especially a slave. But one day she was separated from her husband and older children and taken with her two little ones to be a cook in the home of Captain Antonio Vieira de Couto, where she and the other slaves were beaten. In despair, she wrote to the governor about her terrible situation. She waited each day for a reply, never giving up hope, and although she never received an answer, she is remembered today for being the courageous slave who wrote the first letter of appeal in Afro-Brazilian Brazil. 

Sharafeddine, Fatima. (2015). The Amazing Discoveries of Ibn Sina. Illustrated by Intelaq Mohammed Ali. Toronto, ON: Groundwood Books.
A picture book biography of Ibn Sina-- a philosopher, scientist and physician who was born in Persian 1000 years ago. Published this past year by Groundwood Books the book is told in the first person making the ideas very accessible to even young readers.  A fascinating history that is often not represented in US schools. I would also recommend the first book in the series, The Amazing Travels of Ibn Battuta

from Poet: The Remarkable Story of George Moses Horton

Tate, Don. (2015). Poet: The Remarkable Story of George Moses Horton. Atlanta, GA: Peachtree Publishers.
This picture book biography is about 19th century poet,  George Moses Horton, a North Carolina slave.  He purchased his freedom through his art and wrote about slavery through verse. I am familiar with Don Tate's art work having included his book, It Jes' Happened: When Bill Traylor Started to Draw in an e-book, Making Knowledge in Grade 2 through Read Alouds & Small Group Instruction, that I recently published. This is a link to a reprint of Horton's poetry. This book was published on September 1, 2015.

from  Funny Bones: Posada and His Day of the Dead Calaveras
Tonatiuh, Duncan. (2015). Funny Bones: Posada and His Day of the Dead Calaveras. New York: Abrams Books for Young Readers.
I only recently became familiar with Duncan Tonatiuh's picture books--and have enjoyed each that I have read.  I appreciate that he offers insights into important history that is not always included in traditional history books. I included his book, Separate is Never Equal  in an e-book, Making Knowledge in Grade 2 through Read Alouds & Small Group Instruction, that I recently published.  I look forward to learning more about Mexican artist, José Guadalupe (Lupe) Posada and his important art. This new picture book was released on August 25, 2015. I was most surprised with the wealth of information. 

from To the Stars! The First American Woman to Walk in Space.
Van Vleet, Carmella  and Dr. Kathy Sullivan. (2016). To the Stars! The First American Woman to Walk in Space.  Illustrated by Nicole Wong. Watertown, MA: Charlesbridge. (40 pp.)
A picture book biography of Kathy Sullivan, a NASA astronaut--a woman who loved blueprints and maps. This title was released 1.6.16.

from Voice of Freedom: Fannie Lou Hamer: The Spirit of the Civil Rights Movement.

Weatherford, Carole Boston. (2015). Voice of Freedom: Fannie Lou Hamer: The Spirit of the Civil Rights Movement. Illustrated by Ekua Holmes. Somerville, MA: Candlewick.
It's great to see a picture book biography about civil rights activist, Fannie Lou Hamer. I have admired Carole Boston Weatherford's many books and look forward to reading this one.  She tells Hamer's story in the first person verse. Illustrations are rich. This book was published on August 4, 2015.

White, Jonah. (2016). Hillary.Illustrated by Raul Colon. New York: Schwartz & Wade.
New picture book biography about Hillary Clinton, presidential hopeful. Gorgeous illustrations. Published in January.

#SOL16: Protect His Death

Rob's Hand (M.A. Reilly, 2016)

Rob has always adored our son, Devon.  He still does. But as his illness progresses, he is acting in ways that are at times both gruff and cool.  At first this was directed only to me. But earlier today, Devon was lightly rubbing Rob's shoulder--trying to soothe him--and in front of others, Rob curtly told him not to touch him.

We are a family who touches. We have taught Devon that and I watched as his face shuttered closed and he left the room. A little more of my heart broke, knowing he was hurt. Later we would sit on his bed and he would let me hold him as we talked about why his father was withdrawing.  It's one thing to read about the stages of dying and quite another to experience them via your husband or your dad.


Dying is a complicated matter, especially when for months there has been an active fight against it; a herculean effort to curtail its progression.

Surgeries. Radiation. Late night prayers. Chemotherapy. Antibiotics. Transfusions. Bargains with God.  

Now death reveals itself as the natural end and I feel as if I have been turned upside down. I now understand that my initial reluctance to give Rob morphine every 4 hours had more to do with my reluctance to lose him.  I still want a miracle.  Morphine is an odd kindness. It soothes him, eases his pain. And Rob is a man in need of soothing.

Later, as Michael makes a cup of coffee in the kitchen, I talk about some of what I am realizing and how we all worked so hard to protect his life and he says to me, "Now you are working to protect his death, his dignity."

Protect his death.

Yes, there is that. I only have to remember  these last few weeks in the hospital to understand what protecting his death might mean and the travesty that forsaking its protection would render.


We are twisted in each other's lives. More möbius strip than straight line. More Klein bottle than jug.

And so is it any wonder that Devon and I feel so lost, so lonely, and yet we so deeply love Rob that bearing his pain, privileging his comfort above our desires, and witnessing his end is honorable, right, and necessary.

And still the pain steals my breath.

Thursday, February 18, 2016

#SOL16: Time

“Each time is true, but the truths are not the same.” 

― Alan LightmanEinstein's Dreams

A few days ago, Rob told me he had to de/institutionalize himself. He explained that when he came home he had to remember that food need not arrive at 7:30 a.m., noon, and 6 p.m. and it need not be delivered by someone in hospital garb or arrive on a tray. 

You can eat when you're hungry. 
Time need not be measured by the arrival of morning and evening meds. 


Rob resting at home.

I think of the absolute distortion of one's reality that longtime hospitalization causes. Our friend Michael, who is staying with us was helping me to reposition Rob in his bed this morning. The sunlight pouring through the window was in Rob's eyes and he began to gesture. Michael went to lower the window blind thinking the sun was bothering Rob.  Rob stopped him saying how lovely the sunlight felt on his face. 

It's the simple things--sunlight warming your face...the familiar landscape out the window--that hospitals fail to provide. There is nothing idiosyncratic in a hospital. Uniformity rules.

I try to recall the light in the many hospital rooms where Rob stayed these last 50 days and recall the harsh artificial lights that were more typical. More expected regardless if he was in a room in ICU, the oncology floor, or a step-down unit. Windows were absent in the ICU, small and oddly placed in the step-down unit, and a bit larger on the oncology floor. Nonetheless,  the single window was far enough away from the bed that any warmth and light was greatly diffused, if felt at all. 


Home helps us to recall what we like. 
Home reinforces that we have interests, positions, purposes, preferences.  
Home asserts our agency in pronounced and subtle ways.