In the hospital again.

Love is a painful process.   Obvious, not new information, but as real as crawling across the overflow of needles from the sharps boxes on your bare hands and knees when you are staying with your sick child.  I consider myself incredibly lucky, because my husband and I trust the surgeon who is in charge of what is highest and most important – Daniel’s life.  I know that when he makes a decision he weighs a hundred, maybe a thousand, different details of how what he recommends to us will affect Daniel, and our family.

I can no longer count the number of nights I’ve spent laying next to Daniel, either in his hospital bed with him, or next to him – weeping my love for him onto the pillow between us with each tortured beat of my heart.  Trying to keep the sobs silent,  so he can sleep.  My precious, beloved Daniel.  The boy with the perfect home birth.  No one could have convinced me that I would give birth at home on my hands and knees in a tub of warm water with a midwife watching my infant’s perfect peach-fuzz head crown as God only knows what else was emerging from my wide pregnant behind at the same time.

I was brought into the world already bound by a complicated contract that involved “saving my mother’s life” (her words, repeatedly over the years, not mine) her perfect, precious shield when the woman my father was having an affair with at the time showed up at our door to inform my mother of their relationship.  This type of thing continued, continues to this day, as my father slips away in his dementia.  Whatever my parents believed about love seems alien, if anything,  in comparison to what I feel for Daniel.

We drifted for hours in that birthing tub, as the midwife patiently kept warming the water for us, lost in the mystery of what we had just experienced together.  We were hypnotized, transported  to a place of such intricate, utterly natural, beauty that neither of us could bring ourselves to break the spell.  I certainly couldn’t.  You nursed on and off, amazed, comforted, eyes so wide-open and blue it was easy to disappear into them, to lose time, immersed in a mystery far beyond anything I’d known before.

Now, since your second birthday, I’ve been feeling the clock tick down the moments of our time together, wondering how a heart can still function when it is  broken time after time after time.  Each decision made regarding your care weighed down by the unbearable guilt of knowing that it will take pain, pain I’m choosing to allow you to go through, that I cannot take upon myself instead, to keep you with me for a few more ticks of that damned clock.  I wonder too, how long your will to live can withstand the tests you hate so damned much.  It would be one thing if you wrote beautiful poems that inspired others, and found meaning in your suffering, but we haven’t been that lucky my love.  For the most part, what you’ve found from your suffering has been only that, suffering.  Not that you don’t recover, of course you’re resilient, but sometimes you cannot hide the accusation in your eyes, dear one, “Another poke Mom?  Another procedure, REALLY Mom?  This is the bargain I consented to in the tub 12 years ago when everything was soft, even the light, and warm; all rounded edges with no sharp corners, the hardest part of it all the nub of your nipple waiting for the suck of  my cupid’s bow mouth, to release the sweetness of your colostrum and your milk to fill what I didn’t even know as hunger yet?”

Daniel, my love, it was never my intent to violate the sanctity of those moments.  My breasts still ache with emptiness, useless to you now, no longer conveyors of comfort, but rather a mystifying remnant of a part of our relationship that ended long ago, and now do little but absorb the wretched sobs torn from your fearful lips, sometimes absorbing the blows of your young man’s fists, saying, “No, damn you, No!!”  “This isn’t what you pledged to me early in that misty morning of September 10, 1997!  I want THAT life back – the one we thought we had been given, the one with years of happiness and adolescent rejection and slow reintegration until the day I handed you my own child, the day I could acknowledge what we both thought we had forged during those months and hours of pregnancy and birth, and I could witness YOUR tears and know that some circle, some cycle had come round, had come round right.”

That is not the future we have though.  You know I am waiting for you Mom, back in our hospital bed, to do the best you can to salvage what is left to us.  As always, with a heavy heart, I will return to you beloved Daniel and at least do all I can to make something of beauty from what the random twist of genetics stole from us the day you were conceived.  Whatever the pain still in store, whatever the suffering still to bear, the magic we had those first few hours can never be taken from us.  And I will carry that magic, whenever you can’t, for both of us, for as long as that twisted, sadistic clock gives us in ticks and tocks.  We are still that mystery, imperfect for certain, of mother and son.  Our lives give honor to that, and it is with honor, with the deepest love and respect, that I will return to you now.  You are my love, you are my life, we are who we are, and there is something of honor in each moment we live together.


My blogs have both tended to be journals, or perhaps a series of personal essays, which is what the definition of a blog was originally.  (  Neither of my blogs have generated much interest from the online community which hasn’t surprised me.  It’s been a benefit in some ways, because having a place to put my thoughts has prompted me to disgorge them from swirling endlessly around in my mind.  Almost every writer I’ve read advice from has said that in order to write well, you have to spend a lot of time writing badly.  Both of my blogs contain ample evidence of bad writing, and I hope a bit of good writing here and there.  The audience my writing is aimed toward is narrow.  How many women do you know who are married to disabled men, have disabled children, have experienced childhood trauma, want to help others who have been traumatized by discussing ideas of how to process it, want to write for a living, have lost faith in the religion they were raised in (Christianity), and are pursuing Buddhism through meditation?  Probably not too many.  Two of the topics dear to my heart, disability and trauma, are subjects that aren’t very popular in American culture during good times, let alone during a recession/depression as bad as the Great Depression of the late 1930’s.  What is foremost in people’s minds right now is surviving financially, finding work (if laid off, or out of work), and how to explain why there are no presents under the tree this year.  “Merry Christmas Susie, your present is that we paid the heating bill for the month!” (can you imagine the squeals of joy?)  Already worn out from the bad news, the bulls**t in politics, the swine flu, the increasing poverty and disparity between rich and poor, climate change, ongoing scandals, and the daily reality of problems inside our own homes, how can anyone find the time, or the stomach, to read about someone else’s “personal journey”?  My heart goes out to each and every one of us.

Returning to the original topic, my blogs also tend to suffer from a lack of clarity, or focus.  My thoughts wander extensively depending on input throughout the day, and finding clarity gets lost in the endless to do list of calls regarding my disabled child’s health needs, calls to my siblings as we struggle to find a way to help my 82-year-old, blind, mother take care of my severely demented father, (all but one of us live out of state), and meeting the needs of our two dogs, who both need “exercise, discipline, and affection” as Cesar Milan puts it.  Chronic sleep deprivation, and a hyper-excitable sympathetic nervous system further complicate my attempts to stay on topic with a frazzled brain.  This is the state of being many 40-something women are in, but I’ve not yet found helpful tips to manage my own scattered life, let alone any that I could generalize to help others.  The crux of the issue is that writing has to be my primary “job” and for someone who has always put her own needs last, it’s extremely difficult to justify spending the necessary time on it.

Clarity – it’s where I started this, and where it logically ends.  Prioritizing my writing is going to have to be my foremost goal, or it will continue to not get done.  I guess that would be my suggestion to try and help other men and women struggling with the impossible task of meeting the needs of the incessant, nagging voices that fill your/my head in every waking (and many sleeping!) hours.  Look to your heart, and put your heartfelt dream at the top of your list of priorities.  Put as much time as you can into it, and try to make peace with where that takes you.  Finding clarity around that may help all the other demands fall into place.

Seasonal symptoms

Nightmares that tear at the fabric of sleep

days lost to depression at the hatred in speech

news of no relevance or negatively biased

pessimism reigning over hope’s tender blossoms.

I remember the tears flowing freely last year

as we watched a new president’s inaugural address

how much have we lost in the days since then

in millions of dollars and time and emotion?

we cannot move forward when divided by anger

while the greedy snicker at the success of their lies

seasonal symptoms of Christmas once were

irrational giving, impulsive compassion,

this year what has greeted the coming of Christmas?

a doctrine of  hatred, division, and strife

promoted by powerful voices that scream

and besiege us with dark, fearful visions they see

what has now happened to the world we share?

we are fractured, and splintered, against one another

let’s vow to let no one and nothing divide us

let’s look to the river that flows through us all

of love, of forgiveness, of charity, of light

and turn our attention away from the voices

that play up our hatred, our selfishness, our fear

they cannot succeed if we refuse to listen

let’s open our ears to our hearts’ cries for mercy

and see how much strength we all share in our union

as humans on a journey from form to divine,

as humans on a journey from form to divine.

May love reign.  May peace prevail.


Navigating the stream

Writing at home full-time is a dream of mine.  I realize it’s a dream shared by millions, if not billions, of people and very few have the privilege of living it.  You need a benefactor, or a windfall of money, to sustain yourself financially and that’s if you’re only trying to support yourself.  In addition to the practical reality of surviving, you also need self-discipline and self-confidence to keep at it when your ideas dry up and you doubt your talent.  The two blogs I write have generated little interest in the online world, but that doesn’t take away the joy I’ve found creating them.  It’s a benefit that few people have read either one because I haven’t had to withstand scathing criticism, deserved or not.  Praise, I suspect, is less apt to be found from writing in this way although it’s nice when someone comments positively.

The two enemies I most commonly encounter daily are fatigue, and loss of time.  I live with a man who can survive on 4 hours of sleep a night during the work week, and then “make-up” for what he’s lost on the weekend by sleeping in.  This is not a cycle that works especially well for me, and being a light sleeper I end up getting very broken sleep as well as too few hours of it.  Once everyone has left for work and school, I usually crawl back into bed and grab an hour while I can.  This has a HUGE impact on my productivity.  Guilt inevitably follows these naps and I often find it’s 3:00 before I’ve actually begun anything.  This leaves me with 30 minutes until the first child gets home from school, and the other two follow in succession soon after.   This is where time management skills would benefit me greatly.  It is so easy to get buffeted about by the stream of thoughts and emotions that cascade from my fractious mind.  Checking my email is often the first thing I do when starting my day.  This can take minutes to hours depending on what newsletters have arrived with links to other websites that lead me inexorably toward accomplishing nothing, other than reading, which while mentally rewarding does not generate anything I can point to as a “product.”  Attending to my blogs helps make the day seem worthwhile, but the benefits to my family are hard to assess. (a more mentally balanced Mom?)

The physics of time makes no sense to me, whether due to my PTSD, my inborn genetics, or some combination of factors.  Minutes, even hours, disappear in a stretch and I’ve yet to find a way of reclaiming them.  The tool I’ve found most helpful in staunching the flow of  insensible time loss from my day is mindfulness practice.  It’s slow going.  That’s probably best though, with the time left in this life running quickly by.  Anything that can help bring me back to presence, even for an instant, is a blessing.  Spending time with my Father, which I shared about in my last “Reintegrating” post, has shown me how vital being present is.  A moment of thankfulness is here, right now, for that.  To those of you who are successfully living the dream, I’ll be watching for tips as I continue in my own pursuit of it.



I’m embarrassed at how much time I’ve taken away from writing in either of my two blogs.  I signed up for NaNoWriMo and I’ve written less than 1000 words for that, so no excuses there.  Chronic fatigue is part of it, lack of light with the time change another – has either effected you?  Buddhist practice has also been taking up more of my time, and that tends to make me censor my writing as “thinking.”   Whether that is useful or not for a writer is questionable.  Are there many Buddhist novelists, or short-story writers?  There are plenty of poets, and lovely poetry in many spiritual traditions.  My hope is that as my practice evolves, my blog posts will as well.  How many people actually want to hear any one individual’s stream of consciousness?  (can’t believe I blogged about perimenopausal symptoms – B-O-R-I-N-G!!)

I’m giving blogging some distance, and will see what is left when I come back to it.  Hopefully, more substantive posts which can be of interest to a wider audience.  I won’t ask that you stay tuned, but hope to be back soon.

Living with a writer.

This is what it can be like when you live with a writer.  I sent this text message to my husband a couple of days ago.  I’m a shameless gusher, embarrassed, but shameless.

Text Message to My Husband

I love you.

Stating it risks redundancy,

but you who have loved me

through all the rough, raw places;

through hours of insanity

for the blessing of a moment

with sweetness and clarity;

you, who made me believe

I was lovable by staying;

by taking my hand,

even as I pushed yours away,

pretending indifference,

as my heart hemorrhaged fear,

my soul quaking

with the knowledge

that this might finally be the hurt

that turned you away from me


Even then, brave lover,

you took a chance that it was all an act,

that if you could remain,

the husk would fall away,

revealing tender kernels, plump and sweet

with the juice of innocent yearning.

Holding the very instrument of your pain

tightly against you,

intuitively, you knew

that if you could withstand the agony,

I would melt and meld with you,

and we would rush, warm and wild

through this craggy life

we were thrust into,

that we still have so much of

to live through together.

You, my lover and most steadfast of friends,

are oxygen to the burning embers of my being.

You fill my mind to overflowing

with all the ways to speak those words,

I love you.

Clinical Hands

Clinical hands

The first hands to touch me

were clinical hands,

as you laid in twilight sleep, mother

drugged against your wishes

by a doctor who “knew better” than you did

what was good for you and your newborn daughter.

Clinical hands passed me

to other clinical hands

latex against my exposed

and innocent skin.

The only child of five

not laid upon her mother’s warm, waiting breasts

Could that be the explanation

for the inexplicable fear of abandonment

that has paralyzed me most of my life?

A fear that compelled me to crawl on my hands and knees

Until I could prop my chin at your feet, willing my gaze to awaken you

without rousing the jealous man who lay beside you?

When I was lucky, your eyes would flutter open

your tender gaze would find me,

and you would open your arms

like the gates of golden heaven

and the grip of those cold, clinical hands on my heart

would be torn loose, banished by the warmth of your body.

We cannot know now

if four decades ago that doctor’s arrogance

disrupted the earliest, wordless bond

of mother and child.

Perhaps it has nothing to do with the consuming emptiness

that has haunted me all of my life.

Maybe it is only a result

of your decision to share that story

over and over again as I grew-up

that created the memories of being taken

from a warm, safe haven of love

to a place of harsh, sterile separation, barren of life.

The stories we tell our children

have a power unimaginable

in the adult world, of logic and common sense.

I cannot blame you mother

for sharing a memory that was painful for you.

I just wish that I could go back and change it, for us both.

Writing time

I’ve been reading a lot of quotes lately from writers about finding time to write.  The consensus seems to be that “real” writers spend time, significant time, every day, working.  You can read books, blogs, magazines, and find thousands of distractions but if writing is your life, you devote yourself to it .  That means a lot of words and sentences, whole paragraphs and pages, that may be crap.  Crappy or not though, you’re not likely to write well if you aren’t writing for several hours a day.  It’s not an easy life, to say the least.  I say that as an unpublished, aspiring writer, and it’s far from original.  It’s an encouragement to myself to stick with this.  I had Chicken Soup for the Writer’s Soul for a while, and it was great for giving examples of how perserverence paid off for authors.  The love of writing has to carry you when your belief in your own talent is minimal.  Ultimately, you face yourself every day and that’s probably the most daunting aspect of writing, at least for me.

I’ve taken to ending my blog posts with a wish, or a blessing, for anyone who might read it as well as for everyone who doesn’t. (the vast majority)  May each of us trying to find our voice have the strength to open our minds and ignore our inner critic.  May we be willing to write crap, knowing that within it there are jewels of inestimable value.  May we also trust our heart that says with every beat, “write it, write it, write it,” knowing we have something to say that is worth writing about.  Bless us, published and unpublished, famous and unknown, as we gather up our courage and strike the first key with our fingertip, launching ourselves into a new galaxy one word at a time.

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