All the Bells of Heaven may ring, all the birds of heaven may sing

Algernon lived long before babies with complicated syndromes were granted a life longer than a breath or sunrise or maybe a moon; but still this lyric was written especially for yesterday when my patient and I and her dear Poppa heard her laugh for the first time. Her Passy Muir valve is a small purple miracle, by allowing the air to got into her trach she gets to keep breathing, but the valve closes and forces air up past her vocal cords. I am not sure who was more delighted.

And that my friends is what keeps me getting up in the morning this week. One more poison session to go, and if I let myself the combination of nausea, tiredness, and financial insecurity would chain me to my to bed more securely than good iron.

What I know for sure is every day can be given a reason, even when my body cries for me to crawl back into bed and just wrap myself in self-pity and nausea and pain, my mind knows I have been given another “now” with which I can maybe leave one life a little better for me having touched it.

We each have a unique collection of balms we can apply to the illness  and despair rampant in our world. I have received so much nurturing since I first reached out;  from simple smiles and PM’s  to a five dollar bill someone thought I didn’t know they slipped into my purse, to the 100$ donation from a woman(who if not on the same  cancer track is certainly getting trained at the same gym, and her soul is Ironman worthy). So I thought I would let you know how I am spending the days you are helping me continue to stack together and tell you about that laugh. Yesterday, I helped parents hear their toddler laugh, watch her sign to Sesame Street songs and take wobbly and unique strided steps, but steps all the same.

My skill set seems to be about empowering the parents of special needs children while loving and meeting the physical and therapeutic needs of the child, all towards optimum outcomes, like yesterday.

You who are parents, think about the joy you felt with the first laugh, the milestone of the first step; now for a moment imagine being told that your child, if they lived, would probably never achieve the most basic milestones. Now hear that first laugh again.

Yup, that is what you are contributing to by being my emotional and for now, financial, safety net my friends.

So thank you, from the bottom of my often tired little nurse’s feet.

Now I shall go throw up and shower and go do it all again.

I really do love my life!


3:00 AM

I used to work for Hospice of the Valley, and a woman who had been a nurse and mentor to me when I was a CNA was admitted to the unit where I worked.  Shortly after I had to take a medical leave of absence, and this is from a sleepless night five years ago.

3:00 AM

If I was still working there now,
I would be cracking my last unopened chart
the one whose evening was noted in a dozen
red ink one liners

on the outlined nights report
and my eyes would struggle with the strong desire to close,
as I record the symptoms
and the remedies
Medicines results not real until a pen has set them onto paper.

But the work I do tonight is another kind of labour and so my eyes
fill wet and spill out erupting magma darkness
my mind instead of cotton
fills with syrup sad and anger sweet
and fears
and tears are the
red lines that will vomit into other black charting

map of this undiscovered place
a record on cyber journal page so I can digest
expose and maybe post
the darkest part of dawn.

I sit and taste the almost moonless night
so once life can cycle again into the light.

I am home here  at 3 AM,
my other home,
not the address you find centered on the pile of unpaid bills
but the couch where I have weathered a decade of my tears and fears
while the friend who stood beside me through it all
the marriages and lovers and not quite one night stands
and those others who I wisely did or did not give my heart; upstairs, with her husband sleeps.

I wander her halls
up to the bathroom,
back into bed
one drink of water
and then two
fighting the inevitable fall into my heart
from the safety of my head.

another drink of water
an email check
as inevitable as toddlers sleep
the feelings come
and I curl in the safety of someone else’s couch
and weep;
clutching yet another toy
the child inside will bring alive
deep beneath my smile and laugh I’ll dive.

but first just one more drink….
another bathroom trip.

In this place thats more than place

in this time thats more than time

Fear is first to walk along the path with me
She brings her sisters Loss and Greed
And hand in hand with little Ego they all stroll.

We wander into fancy

Grief deferred, All lace and rhyme, myth like skipping rhythm droll
past the mirror

the mirror in the bathroom downs the knight, bringing truth to bear on fancies flight

I am not six and safe from Death

It is questions, I think
That haunt me most in this post witching hour.
The Great Unknown.
Questions and a nagging ache that has no words.

I have seen eyes like this before, the ones the mirror makes me meet, my eyes are her eyes staring back.

“I’m not really angry,”
she said,
“Not even really sad.”
She thinks a minute
I wisely wait not filling up the space
but allowing the vacuum of the silence to suck from her things she cannot face.
“Its not like pain, your medicine took care of that.”
I notice I still hold the now empty 1 cc syringe in paper in my fingers
to soon from her first dose for chemical relief but I don’t tell her that.
The paper crinkles tighter in the other hand, the one not holding hers.
“And I’m not afraid,” she kind of chuckles and snorts and cries all in the same expulsion of breath,
we both pause all function, while she wipes the pieces of bodily reality from betraying flesh.
“OK, I AM afraid,” she almost yells
as if some inquisitor tore secrets from her absent breast,
“but not of dying,
of making a fool of myself,
of peeing my bed,”
her voice now just a whisper
“of all this, this ugliness.”
The room quiet except for the machine extracting oxygen from air to feed in concentrated form her tired lungs,
the tears start a silent river flood down that pragmatic nurses face,

“of seeing my husband so, so, so sad.”
sobs turn to something stronger,
” I’m not ready to die,”
she clutches my hand even tighter
body jerking with the movement of her mind
and I think of the four tiny fingers that two hours ago clutched tight to mine as I fed them their last bottle.

“That’s OK,”
I say, moving no closer,
not moving at all
a hug the surest way to scare away that wild burst of rankled grief
that unlanced will trouble every dying breath,
“Nobody is.”
A tiny part of me wants to meet her eyes and let her see
“I know!” it screams in mousy squeeks,
“Look at me, ” it wants to say in outside voice
“I know!”
but that’s a voice for therapy
Support group meetings
dogs and bears at 3 AM.
not patients,
for underneath
blue hot in the center of her life’s flickering flame
she is a nurse as well
and would find escape in comforting me.
This is her Rubicon,
not mine
and this woman that I midwife out of this mortal life

like me has held a hundred hands
and this moment is not
can not
“Nobody is ready.” I murmur back.

Are these the right words
I never know
Right or wrong
what I say really doesn’t seem to matter.
Its not about me and
Its the telling that the woman needs the most
the saying,
so what I do is sit and listen.
“I feel so bad,”
she says as the boil on her feelings burst
“I hate that its all about me all the time
I grow uglier to myself daily
and he tells me I’m beautiful.”

“I’m not beautiful,”

The damn inside completley broken she reaches out to me
and I sit on the edge of the bed
and hold her rocking back and forth
as she shakes and weeps.
“I can’t tell them,” she says,
“I can’t tell him,
but… I’m….. so……… tired” she gasps and tries to fight again,
“I love him, but I’m so tired ” confessional thorn torn from her
She doesn’t win against her weather, but all storms spend themselves in time.
“It’s OK,” I murmur, “He knows you love him.
and we all get tired sometimes”
I rock her till she falls asleep
and lay her back on morphine’s pillowed lap.
The irony of phrasing is not lost on me,
I smile small as
I tuck a sheet here
adjust the light there
switch on the gentle lap of waves and native flute
and leave.

The years of weathered marriage reflecting another conversation
Her husbands sat rigid amidst the soft cushions
like he was ensconced in a hardback confessional chair
It was the first night of my week
the night of his wife’s admittance.
We did not hug,
he and me,

that may or may not have come later,
it always depends on how long it takes for nature to work its final task
but I thought then  “in time we will.”
That night he only looked at his hands,
“I can’t tell her,”
his voice broke as he fought for control and won, at least,
in this.
“I can’t tell her.”
He looked at me for forgiveness that he didn’t need.
“I love her so much, but I’m so tired.”
“Its Ok,” I said and touched ever so slightly his hands,
“Its OK to be tired, I can tell you love her.
We’re all tired sometimes”
He shook himself then
the emotions flying away like water off a retriever’s back
as he left his list of numbers and instructions and all business like and strong headed off to handle life’s overwhelming tasks.
I walk him to the door
both so silent,
he reaches
almost a hug;
the leaning in the most he yet could risk,
“I know you’ll take good care of her,
she’s everything to me.”

His voice a challenge, an order,
not plea,
not yet a trusting request.
He tucked a shirt tail here
Smoothed greying hair there
and left.

She cried as described

day two of that four day week

and died on my days off
that doorway the closest he and I would get to hugging.

My charting said first night
“Support and education provided to spouse.”
and I checked the box “Grieving appropriate”
or however that paper I filled out a hundred hundred’s time
diminishes the hurricane to pencil marks and numbers.
The second night same phrase of sorts,
“Education and support provided to patient,”
followed by my ten favorite words,
“Patient sleeping. No S/S of pain, nausea or respiratory distress”

Three AM darkness
has faded into 5 AM dawn. I will not return to that work again, except perhaps myself as patient.

If I was at work
I would be coming back awake with the rush of deskless shift end tasks.

But I am home
here at my friends
and dawn has come
and I know

That soon I too will sleep.


House at Pooh Corner

Christopher Robin and I walked along
Under branches lit up by the moon
Posing our questions to Owl and Eeyore
As our days disappeared all too soon……..

I am admittedly having a hard time tonight. Two women I love dearly are facing a challenge that I would gladly take away from them, I am much better with my own illness, indignities and eventual demise (yes, we do all die eventually, even you).

I am sad, and angry, and sad. I am bargaining. “Hey God, look, if you were planning on giving me another remission can I trade it in instead for a clean bill of health for my friend?”

“Look, I will give all my legos to the poor and never buy another puppet or Build-a-Bear if she can just get better, and also if I can know what to say, what to do so she will call me or text me when its 3 AM and reality sets in, because I will listen, let them both know I will listen.”

“Hey God, Goddess,  whatever you want me to call you,  cuz what I want to call you right now makes me sound like a petulant 13 year old; let me know when to deflect and when to help defer; help me know when to entertain, and when to just be there. Cuz I know what it has been like to do so much of this alone, let them both be smarter than me and let them ask for help before their ass is actually falling off,  let them reach out just when its just getting loose.”

“Divine universe I have so much to pay forward, and so much still undone, my prayer tonight is to make them better and to make me useful.”

Blessed Be.

………………….cuz I’ve wandered much further today than I should

And I can’t seem to find my way back to the wood

So help me if you can, I’ve got to get
Back ………

Stones would play inside her head…

Music does actually play all the time in my head, long before Ipods and Pandora my brain was generating randomly related songs on continuous play, even including a few commercials. (“I’d like to teach the world to sing,” for one)  I don’t get to turn it on or off with a switch but it also never runs out of charge three lines into a favorite song.

Meditating is about the only time I am music free, not all the time mind you, staying with my breath is often beyond me, on those days I add an external meditation soundtrack to direct my mindfulness, because I have learned what works and doesn’t work for me. I think that is truly one of the gifts of age, accumulated experience makes it clearer what works and what fails us.

One of the things that truly doesn’t work for me, and fails its perpetrator as well, is extreme flailing drama over romantic rejection or a job you don’t like or just plain feeling you aren’t getting enough attention. Some people mess with my serenity, I have shenpa with their drama. You know the kind of person that threatens suicide or mass homicide or dramatically cuts a swath through multiple friendships with a bladed sharp tongue and then refuses to take any responsibility for themselves, I get real angry and frustrated with them, and seriously want to make them just go away out of my life.

I bring that up as a counterpoint to the other thing that doesn’t work for me, how willing we are as a culture to avert our eyes from those in real need. We look away from the man with the sign, the person with disease as if we had no responsibility to help if we judge them unfit.  My meditation practice and my work with TuTu’s book on Forgiveness has made it abundantly clear to me that I do that with those I consider petty or shallow.

Today when one of those humans I have heretofore abhorred began throwing venom and drama like a sprinkler does water, instead of rising to their bait and throwing one more rejection on the pile by permanently blocking them, I took a deep breathe and offered what I had to give of love and compassion.

I probably should have added the preamble to this brief narrative. Two of my close friends have lost their parents to illness in the last few months; while three of the most kind, generous and hard working women I know are quietly going through the journey known as cancer. One of them is in the treatment finished but still rebuilding the devastation of the cure while waiting, testing, not knowing if its back place place that all of us who have been on the other side of the desk for both good and bad news can empathize with; and one is healing from yet another surgery caused be yet another recurrence.  As I am familiar with both of these milestones on this journey I am doing my best to pay forward the love and support various friends and the universe have provided me on my sojourn and be there if needed. These friends are very busy living; they express gratitude and joy and faith publicly while working through the frustration, grief and anger of the physical, financial and emotional toll cancer takes privately. I also have a third friend going for her first biopsy tomorrow.

And I just want to make rent and find a way to register my car while staying healthy enough to keep working.

So I think accepting today that someone else’s pain whose parents are alive and well, has a job, is healthy and just didn’t get their own way, is as legitimate to them as ours is a really, really big step forward for me.

She ain’t heavy, she’s my sister…….

ALL judgement aside.


But I am not so far into my growth that I didn’t breathe a sigh of relief when she got mad at me for being “too Pollyanna” and deleted our friendship. With any luck she will also block me so I can’t see her posts on our mutual friends pages.

I know, I will now go focus and breathe.