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Posts tagged ‘love’

Another day without you.

Bitter, the absence of you, the taste of loss in my mouth.

Missing you so it feels my soul will break apart.

Just a box of you on the mantle in the living room,

a trace of you, but not.

I don’t know yet how to mine the beauty of your life,

to find the traces of silver,

threaded through the bedrock of your suffering.

That, at least, is over now my love.

The mourning dove sings from the rooftop,

while crows caw and chase away the night.

The memory of you cuts deeply,

etched into the landscape of my being.

Another day without you has begun.


What dreams?

What dreams trouble your rest, dear heart?

Are you dreaming of the spinal tap, so long ago? The endless needle sticks for labs and iv’s? Of the Lifeflights, the ambulance rides? Are you dreaming of the surgeries and the long recoveries? The gasping for breath, reaching out your hands for air you could no longer pull into your lungs alone?

Wait. You sighed.

Maybe you are at Disney World, still able to walk. Or are you in your go-kart? (The one your brother always stole) Are you feeling Albert and Annie snuggled near you in your beds? Three darling, little ones tucked into a corner bedroom. Or maybe you are sleeping on Melissa’s shoulder on a long car trip, or being pushed on the swings by Megan? You could be sitting on your Dad’s shoulders as the fireworks in Estes Park cascade over the mountains. Or maybe you are gaming with Kevin or you know he is guarding over you in your room at the hospital?

What dreams weave through your slumber?

I lay awake and wonder, awash in memories, keeping watch.

Defying gravity


The tide of your breath rises and falls; the ventilator, the moon, that gathers and  releases it.

Another night in the hospital. Me by your bed, gazing at you and remembering, as you lay sleeping and dreaming your dreams.

Memories come to me in silken images. You; in navy, rubber rain boots, the blue power ranger to your brother’s red, your sister’s yellow. You; walking and jumping in puddles, or sitting in your older sisters’ laps for story time and snuggles.  You; running to the end of the field and back on cool summer evenings, a price for burping at the table.  Ring tone radio, Make-A-Wish, school and yoga.

There is so much to tell of your life my dear one. Everyone loves you for your sweet disposition, your biting sarcasm, and your kind, kind heart; for your whimsical art, your love of superheroes (favorite – Wolverine), and wicked gaming skills; for the light of your smile.

It is our last night in the hospital sweetheart.  I will finally keep my promise to take you home after this long, difficult year. You have chosen not to come back to this place where we’ve spent so much of your life. I am humbled by your courage, in awe of your strength.

Your birth into this world was at home, surrounded by your family. Without knowing, we knew. No hospital. Too many months there to come, too many years. And now, again, no hospital. Your decision this time, but too soon my love, too soon.

Twenty years times twenty would not be enough time with you. My Daniel, my beloved child,

Engraved on my heart is the feel of you in my arms; as a baby, a toddler, a teen and a man. Always my son, always, my son. Defying time, defying space, defying gravity.

Love’s Woes

Love can cause so much suffering and so much joy.  It’s a crazy ride, and I understand  more and more why some people give up rather than endure it.  Even a devoted meditator can still face heartbreak, and the pain that love can bring actually does drive some people crazy.  Of course there are many kinds of love, and some are less tumultuous than others.  It’s something we cannot seem to live without, and at the same time, living with it can create some of the heaviest burdens a person will ever bear.  My darling son has a very large blood red spot on the white of his left eye.  I’m concerned that it may be due to some of the breathing treatments I have to give him.  I hope it wil go away, but have no idea how long it will take.  Love does not give you certainty, and it is a high risk gamble (some more of a gamble than others)  May love light your way this day, and fill your heart with happiness and fulfillment.

Letters to Mom


Dearest Mom:
I knew, long ago, that I would feel completely lost without you in this world. There are so many ways I miss you I cannot even begin to describe them. I know people try to understand that I’m still mourning. You’ve been gone since June 15, 2013 but it’s barely been a breath in my world. A ragged, dragged in breath between sobs that shake my soul and seem as if they’ll never end.
To say that I miss you doesn’t even come close to what it’s like without you. My life has been ripped apart, and yet, like all my siblings, I have to go on with it. Daniel’s five days in the hospital (where we had an altar with your photo on it) ended with him needing two more respiratory treatments, and his cough is already sounding worse again after a week at home. I don’t know if I can live through losing both of you. I watched your deep sorrows (and joys) throughout your life, and know each of your children had a special relationship with you. Ours seemed to diverge in unthinkable ways at times, and at others seemed to mirror each other. You lost a brother, I will lose a son. You were never quite the same after he was declared MIA, and I have never been the same since Daniel’s diagnosis. I’ve always felt close to your side of the family, and yet I don’t know any of them. I know it is, in part, because you said I reminded you of your mother, although I can’t imagine anyone less like her than I see myself to be. You said I “saved your life” by being there, an innocent young girl with big brown eyes, during some of your darkest times. Times when you needed to know innocence still existed, and I had my child’s view of you as perfect, of your love as perfect, that helped you feel your life was still worth living in some of the hardest days you faced. (then I lost my innocence and caused you some intense worrying, but our connection always felt open) I always saw you as Audrey Hepburn, grace personified, but with an English Garden soul. You didn’t share your most challenging moments with more than a select few. Mostly, you listened. To all of us. Friends, family, people you barely knew. I’ve inherited that from you (or learned it) and I’m so grateful. I let you down most in the last couple of years, when all my sisters called you daily, and I barely managed it once a week. I didn’t want to worry you, and so many of my days were filled with sorrow. Some of it due to depression and letting my “self” get lost. I didn’t want to call you when I was weak, especially once we lost Dad. We’d gone through so much together, I somehow couldn’t bear to talk about our shared loneliness (my own more self-incurred, yours because of the circumstances of your birth and how your life unfolded).
You made Dad’s funeral a hero’s tribute, full of all he accomplished, his honors, certificates, and all he gave to our community. Who will come to your Memorial Celebration Mom? You, who always passed up the glory to let others shine. Those people who really knew you know that Dad, as amazing as he was, needed you as his compass. Always willing to let him have the spotlight, whether holding his hand and heart or holding him up in those last years when dementia robbed him of everything dear to him. No one and nothing was more dear to him than you, sweet Margaret, whose brother carried a photo of you in his U.S. Navy Hat during WW II. where most sailors had photos of their girlfriends. You have been more dearly beloved to more people than can ever show up at your Memorial Service. Many of them are already gone from this “vale of tears” and rejoicing with you, I dearly hope, in that place of peace beyond this life. If there is a heaven, it is there because nowhere else would be fit for someone of such ethereal beauty of form, and of heart, as you. There are many letters, and memories to come. But the duties of my life are calling.
Know my love is with you still, and the love of all your children and so many, many others.

With All My Love, broken-hearted as it may be,

Your youngest daughter,


Love and Loss

Seeing that the last draft on this blog was in March astounds me.  Even worse, I’ve published nothing here since November of 2012.  I lost hope.  Even as I tried to grab at the tattered remnants of the gorgeous golden thread of it, my fingers slipped.  You could say it was a nervous breakdown.  Strong as my spirit can be, the last few years have been especially rough for all of us riding through the universe on our lovely mother, earth.  We are trying to cope with so many stressors at once, and our Great Mother, who supports us all has been getting sicker and sicker.  Species are disappearing, cruelty has been splashed across the news at every turn and if we love our fellow beings it seems cowardly to look away.  Day after day then, we watch the losses mount and hope that our species has enough intelligence to overcome our greed for things.  Each centimeter of wilderness that is lost costs our hearts and souls on some level.  Even as spring arrived, and the trees burst forth with blooms; even as we delighted in a family of fox that took up residence in a mound on our land, still the world seemed fallow.

My birth mother is suffering, and has been since the death of my father.  One accident or illness after another has beset her, and a frightened child took up residence within me.  It became to risky to call and hear the pain in her voice.  God bless my three sisters who would call every day, as I barely managed a weekly check-in.  Lucky enough to see her for mother’s day, I rode many hours in a car driven by a spiritual warrior to get there.  My sister, Anne, has maintained her writing throughout every crisis, every set-back, every let-down as she crusaded for the quality of each human life she offers her wisdom to, and forded the river of deep despair that seeing the gridlock in our nation’s capital has on all but the most powerful lobbies;  allowing our mother to be strafed of life, fracked/raped for the resources we can still violently drag from her depths.  Even through her fallow times, she has prevailed.  I respect her so deeply for that.

My sisters, brother and I are all trying to comprehend what life without our earthly parents will be like.  Each of us is trying to cope in our own way.  Today, rather than working against my self, I am attempting to open the vein of creativity again.  I am putting my faith in the regenerative qualities of letting that blood flow forth, knowing there is always a new supply waiting to refill it.  Loss is as much a part of life as the cry of the newborn child, fox, wolf, of any sentient being.  It cannot be denied if we want to move with the natural rhythm of this earth.  Contemplating all of this, I send you blessings, peace and Namaste‘.  The light of spirit remains however dark our surroundings may seem.  May all of our lights be bright this day, and may strength flow into you like the sap in the trees.

Providing Meaning

My son was so tired tonight, his spirit so exhausted.  How can I possibly seek respite from caring for him when I have no way of knowing how many more days we have together?  At 15 he has to tolerate getting help from his mother with showering, eating, getting dressed, and so many other things he would rather do himself.  In order to make sure he is cognitively challenged (because he is much closer to 15 in his ability to think than people realize) we had to find a school that is an hour away.  Two precious hours of his life are spent on a bus everyday so he can get the education he needs and deserves.  Mainstreaming, at least where we are, was never a viable option once he hit middle school.  He was put into a special education class with a mixture of children whose needs were so different from his that he might as well have been an alien from outer space.  That’s  how little his teacher knew about how to teach him.  The name “special education” is completely inappropriate for the variety of needs children bring to the classroom these days.  I don’t blame the teachers.  I’m sure they do the best they can with the resources they have.  When you have a child with an “orphan” disease or a “zebra” as they are called in medical parlance, you have to do a lot of research on your own.  Let me repeat that, A LOT OF RESEARCH, as a parent, not a scientist.  We who don’t see our sons and daughters as “interesting cases” but as living, breathing beings who experience frustration, depression, joy.   That task belongs to parents, and you do your best to become an expert about all aspects of your child’s condition.  Even when reading every word crushes your hopes, or elevates them to unbelievable heights, it is your CHILD that you are reading about, not some lab subject.

Time continues its forward movement, and I’ve watched my child learn to walk, talk, and feed himself   Then I’ve watched in agony as these skills were slowly stolen away.   I can’t count the naps, nights, and post-surgical sleeps  when I’ve held him as I tried to hold my body still, wrenching sobs hitting like earthquakes, and tears runnng like twin rivers from my aching eyes.  There is no pain for a parent like the pain of watching your child suffer.

As any good parent would, (not perfect, good) you try to do as much as you can to make your child’s life a happy one.  Your child hasn’t changed.  Their future may have, and their life expectancy may have, but they have not.  You love them just as much, if not more, knowing that the challenges they face will be so much harder than the challenges of “ordinary” children.  As your child grows and becomes aware of all the ways that their lives will be different, how do you give them “meaning” to hold onto?  Church provides that for many families, but if your faith does not include church and a specific belief system how do you help your child see the worth of living?  As he or she faces the realities that come with his/her condition, how do you help him to see that his life still has rich opportunities?  How do you explain that missing the prom, and the driving test are not the only testaments of how much of a man (or woman) he is becoming?

I want to infuse meaning into my son’s life like an intravenous line infuses fluids.  How do I accomplish that?  We joke about the “butt” print that is in the leather seat where he sits most of the day when he’s home, watching T.V. and playing video games.  These things do not really challenge him, they merely make the passage of time flow more easily.    I want to take him outside and show him rocks, twigs, branches from trees that have fallen…some  connection with nature.  Maybe that’s idiotic, he won’t be able to do theses things once he’s graduated from school.  He doesn’t even want to.  His art though, that tells me something different about his heart and soul.

His art brings meaning to his life in a way I never could.  It captivates me, transports me,  lifts and spins me in directions I never knew existed.  It is his own world, where he imports his OWN meaning.  It gives him something nothing else does, because it is his own.

I don’t know how to infuse meaning into my son’s life.  I need to trust that his bright, brilliant spirit will do that on its own.  I may be able to provide opportunities here and there, but the day upon day hours are his, not mine, to spin into whatever shape and intricacy he chooses.  To imagine anything else is an insult to his intelligence, and a grandiose  vision of my own.  My sweet Daniel, your life is your own, and it is YOU who nust decide what brings you closest to spirit.  May God bless and keep you on your journey, and slap back my hands when they try to intrude.  You are a perfect creation,  and I bow to the effervescent unfolding of you.  Namaste’ my love, your life is its own gorgeous and unique unfolding.   Thanks be to all that is!  May the light of love always guide you, and keep you safely in it’s arms.

Being a Nurse

Oh Great Spirit, who watches over us all, from the tiniest single-celled organism to the magnificent artic wolf, please place me where I can be of most help to others today.  My heart is heavy with the suffering of my fellow humans, and our weary earth.  I know people can be demanding, and my desire to help can make that stressful, but please help me to be gentle with those I serve and and with myself.  We are all struggling to make sense of the life you have graciously given us.  We all suffer feelings of disconnection, and still, there are many moments of joy.  Something in us is restless with need, a need we reach to fill with so many things that cause us harm.  Help us to know that our connection to You is where the true healing is.  Help us to know the same about our connection to each other, black to white;  every color to every other; every worshipping Muslim praying to Allah, every Hindu placing flowers on their altars; those who find you in nature, hearing your breath in the touch of wind on their ear; each Christian, Buddhist, Agnostic or Atheist; please find the grace you instilled in each of us upon conception and help us to extend it to one another.

In my weak, miserly state, help me to find Your strength flowing in my veins and give the Great Love You created in me to those I serve.  I am only one nurse, but help me provide comfort to those hurting in body and soul who are in my care today.  Help me to be gracious to all the others I work with, and in thoughts of my family while I am separate from them.  Let me be an example of how You and our mindfulness of Your presence can give us all hope.  Great Spirit, help me to say “Yes” to each moment, as Tara Brach has written, and find Your perfect living light in each being I have the privilege to see.

I bow in deep gratitude to Your wisdom, knowing already You are working within me to transform what is limited and feels so small, into a soul steeped in gratitude and love for every aspect of your creation.  Blessings to all sentient beings, and to all You have brought into being.  Namaste’.



I have always lived with the reality that I have heightened sensitivity.  I am hypersensitive to loud noises, bright lights, sudden movement, and especially to anger – whether directed at me, or  my own.  From a young age I learned not to trust signals from within.  Genetically, I have a “special chromosome” that tells me I am at fault for everything.  When a parent or anyone is angry, I know it is because of something I did or did not do.  Whatever hardship comes my way, including abuse of various types; rape, assault, bullying, abandonment – it all seems karmically deserved.  There was something broken in me before birth, and it has been my family’s misfortune to have to witness me living out this belief over and over.  The  bedrock  I built my self on is my complete lack of any lovable quality.  Again, this was/is chromosomal, not due to anything my parents or siblings did or didn’t do.  In some ways the more they ‘ve tried to show me their love, the more shame I’ve felt at the poor stuff of humanity that comprises my being.  Various professionals have attempted to help me along the way, some with more success than others.  This sounds like “victim” talk, but it is a limiting mindset.  It is me trying to understand how I have at 1/2 a century of life still been unable to shake it.

I stand at a threshold, one I’ve stood at before.  This time I want to think deeply about how I want to cross it.  I’ve had my share of falls, trips, and dives through others.  I’ve visualized what I want for my life, and as with many of us, I have limited its fruition due to  circumstances and self-doubt.  There is no blame here (other than my own) for weaknesses that have held me back, distorted my thinking, and guided me toward self-destruction.  I have been extremely fortunate to have a husband who has been stalwart in staying with me, and insisting on loving me despite all my attempts to deny it is possible.  In his case I have not been as able to use the excuse, “well, he’s family, of course he’s going to say he loves me.”  He’s also one of the most determined people I’ve ever met, and does not give up easily.  (to be fair, my family doesn’t either)  The threshold still awaits, and I’ve taken many steps toward it that have been extremely positive.  There have been negative ones as well.  For those of you who share my particular genetic disability (or have it for whatever other reason) how have you overcome it?  I earnestly request feedback on this, and will appreciate any experiences you would be willing to share.  I will keep them private if you let me know that is your wish.  Namaste’.

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.


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