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.


And still there is beauty.

The blue white light of the moon slowly fading.

as the warm, yellow sun rises.

Walking out with my three companions,

the snow freezes my toes.

Thinking of my mother’s face,

reflected in those of my sisters and brother,

Her love carrying us like a wave,

into another day on this precious earth.

I bow my head in gratitude,

for all that has been given to me,

and as she would say,

for all that has been taken.

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’.


The Mystery of Healing

Many walking wounded (or rolling, as the case may be) are among us.  Buddhism teaches that pain is inevitable in life, but suffering is optional.  A primary lesson the Buddha taught is that pain + resistance = suffering.  It’s not the easiest concept to digest when you or someone you love is in pain.  It can begin at birth with a slap on the bum from a friendly doctor or birth attendant.  One minute you’re floating in a warm, comfortable sea of fluid, and the next thing you know you’re being squeezed through a narrow opening out into a very bright, noisy, and wide open space.  The boundaries of  the life you’ve known are suddenly gone, and you find yourself pinwheeling your arms and legs through open space.  I had one child in a hospital with a midwife, and watching him go through the free fall that birth in a medical facility can be convinced me to have my other two children at home in a deep, warm pool of water. (I’ll be honest, it made it a lot nicer for me too!)  It was, and still is, a controversial decision, but that isn’t what this post is about.  A physician named Michel Odent ( and countless midwives {including a saint of a woman named Ina Mae Gaskin ( and my personal heroine, Ginger Breedlove, ( )} can address that issue with much more authority than I.

I’ve posted about pain before and with my new job will probably continue to.  The reason it is so present in my mind and heart today is because of my husband, Kevin, who I adore.  For close to a year now he has woken up in the early morning hours, (3:00, 4:00, and so on) in such intractable pain that he cannot get back to sleep.  He’s spent years learning his own body, and because of that he can give me ideas to help his pain become bearable.  I am a Certified Reiki 1 practitioner, (thank you Amy Rowland and have given Kevin some treatments that have helped.  Even when I’m not using Reiki though, the training Amy gave me helps me to connect with spirit.  Kevin had a number of spinal surgeries as a child, and the scars and nerve injuries he was left with are unique.  He has a long-term relationship with severe discomfort, and in the darkness of pre-dawn, I can feel his restless movements when the pain has interrupted his sleep again.  He can usually coach me on what to do and where to do it, whether it’s scratching, pushing on pressure points, or having me push my fingernails into his scar tissue, leaving half-moon shapes etched in a chain up his back.  It is one of the most intimate parts of our marriage and brings up myriad emotions.  I feel privileged, and humbled that he trusts me enough to share this with me.  I feel a deep joy that is indescribable when he sighs or groans in relief, letting me know I’ve “hit the spot.”  The best part of all is when there is still time to hold him or be held by him and feel  his body relax, hear his breathing as he settles back into sleep and know that I’ve played a small part in helping that happen.   It is not easy being that vulnerable to another person, especially when you are a strong, independent man used to taking care of yourself.   It is one of the most precious gifts he gives me, a testament of his love that brings tears to my eyes.

It doesn’t last that long, unfortunately, but he doesn’t hold that against me.  He is willing to let me try again when I can convince him that he’s not depriving me of anything I need.  Every moment of that time is a living prayer from me that the mystery of healing will somehow come through my hands and give him some measure of relief.  It is so hard to stay physically open to other people, especially if you have “differences” that make you stand out from others, real or perceived.  We don’t know why healing happens in some cases and not others. It is still a mystery to healers of all varieties.  In those moments my husband and I share, there is no question that healing occurs for me. It is my hope and prayer that it provides some healing for him as well.  May you allow yourself to give and receive healing today, and every day.  Namaste’.

New day, new job

Today I start work for the first time outside our home in two years.  I was up until 1:00, up again several times because of pain, and am now  hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation.  A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia.  I wouldn’t be up so early, because he’d get himself ready for school.  He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills.  He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory.  Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now.  Instead, every moment he spends awake takes more energy than I can imagine.  He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much.  Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with.  Kids like him.

In addition, he’s been coughing for weeks now.  His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is.  I’ll spend the day worrying about all of my kids, but especially him.  The bright spot was a gift I was able to give him last night.  When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.”  “No honey,” I replied, “You will always be my first and most important person to care for.”  I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that.  I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time.  His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night.  This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure.  They didn’t complain though, not one of his family.  Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him.  They had another characteristic that helped them.  A deep, enduring faith in God.  It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on.  I pray with all my heart that I can find just a little of that faith myself today.  Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee.  A LOT of coffee.  Namaste’, and may God Bless all of us on this spiritual journey in our human forms.

Thoughtful blogging.

My last blog post wasn’t very thoughtful.  Hopefully people read all of it and didn’t stop with my whining and complaining.  (oh wait, that WAS all of it!  : D )  Nothing in life comes with guarantees, and I’m very lucky to have the wonderful husband I do.  The fact that I get triggered is my issue, not his, and meditation is the best antidote for that particular problem.  Our couple’s therapist says we are on opposite ends of the spectrum in reference to the Mars/Venus characterization.  I’m as emotional as you can get, and he’s as analytical and logical as you can get.  I’m a female Kirk to his Spock – ha!  For a while our therapy sessions would start like this;  “So, what major life events have happened since our last session?” because we fast forwarded through so much.  In the time most couples would have had decades to go through issues, we’ve had months or weeks to go through.  My husband has honored the vows he made on the day we got married every single moment of every day.  He’s had catastrophic health events happen, plus taking on a whole “needy” family.  He wouldn’t characterize us that way though, he’s not that kind of man.  He really is a prince, and he has given us stability.  While I spin around like a broken accelerator dial on the dashboard of life, he keeps us all on cruise control.

On top of that, he’s helped me to stay more balanced too.  He’s a great Dad for our kids, and he’s the most virile man I’ve ever met.  In other words, the chemistry is still there and I can’t imagine it ever not being there.

I hope this blog entry is more thoughtful than my last post, which was written by Mrs. Hyde. ; <   I try not to let her take over too often.  We’re all human, for better or worse, and the best we can do is keep working on lengthening the pause between action and reaction.  In my case that is going to take A LOT of hard work!  Laying on the grass, even if it is brown from lack of rain, and picking Queen Anne’s lace on our family walk and roll after dinner (two bipeds, two wheelchairs, three quadrupeds/canines) can do a world of good in changing my perspective from that shrunken, self-absorbed me to a woman very grateful for all my blessings – with my husband at the top of the list.  Peace and blessings to all.  Namaste’.

Resiliency and vulnerability

Listening To Shame is a talk by Brene’ Brown. (  I’ve linked to it, because this is a talk I took notes on.  Sitting at my dining room table (when I should have been making my family a fantastic dinner) I took notes on her talk so the words would be on paper for me to refer to.  Dr. Brown made a number of points that had me bouncing off of my chair with excitement, one in particular being that as a culture (and I’m paraphrasing here) we numb vulnerability.  She also talked about shame, and links were made  between shame and vulnerability.  I don’t know when I came to believe that being vulnerable was shameful.  As Dr. Brown says in one of her talks (I listened to several last night ) vulnerability easily gets confused with weakness, and weakness is not seen as a virtue in our society.  Dr. Brown speaks about how we try to numb our vulnerability, saying we are “the most in debt, obese, medicated and addicted cohort in history.”  (“cohort” being a reference to the group she studied)  Why?  Because many of us try the above, we try to numb our vulnerability, and “you can’t selectively numb,”  according to Dr. Brown.  When we numb vulnerability, we numb everything.

Dr. Brown gives a definition of blame as “a way to discharge pain and discomfort.”  That definition was like an arrow hitting a bull’s eye in my heart.  Blaming myself for my son’s genetic neurodegenerative condition (and pretty much everything else that is “wrong” or not good in our family’s life) has been a way for me to discharge some unbelievably painful and uncomfortable emotions.  It’s also slowly been killing me; at least the me I want to be.

It goes against all of our biological programming (fight, flight, freeze) to stay vulnerable, like you’re constantly exposing your underbelly to the world.  It doesn’t seem like great advice for someone to tell you to stay that way, from an evolutionary standpoint.  That’s if you equate vulnerability with weakness though, and Dr. Brown isn’t doing that.  She equates vulnerability with courage, compassion, and connection.  Those are things that prolong life;  things my Mother is an expert at, and that she tried to teach me.  They are things she learned from her own mother and from losing her only sibling, her brother, in World War II.

She learned it from seeing the vulnerability we ALL have, and when she was hurt in that excruciatingly tender spot we know as our heart, she allowed it to make her stronger.  She didn’t build walls around herself, she flung herself open to life and said, “See?!  I’m still here!  I’m still standing, and loving, and laughing.”  My Mom knows vulnerability inside and out, like a dear friend.  I aspire to her example, because all of the things Dr. Brown suggested at the end of her talk as essential to our survival are things my Mother lives every day of her life (and my siblings do too):  1) Let yourself be seen.  Deeply seen.  2.) Love with your whole heart even though there is no guarantee.  3)  Practice gratitude and joy in moments of terror – fiercely.  4.) Believe, “I am enough.”

I know my Mom has struggled with the fourth principle or piece of advice.  I think a lot of us do.  She has told us, her children, over and over again that we are enough – even more than enough.  Dr. Brown’s talk served as a stirring reminder of so many moments in my Mother’s life.  Standing on a ship in the Mediterranean Sea she could throw a wreath over the rail in memory of her brother, whose body was never found; helping deliver a baby on a moving train in India around the 1950’s;  GOING to India with my Father, oldest sister and having two more babies during their five year stay in the 1950’s…the examples go on and on.  She’s a tough act to follow but she’s never indicated in any way that she wanted to create more of her “selves.”  As I wrote in my last blog post, she’s a pro at letting go.  She worries like crazy, and I don’t want to make her sound too perfect, but she’s an amazing woman.  Her life has really made a difference to a lot of people, many of whom she has never seen again.

My Dad was amazing too, and my intent is not to slight him in any way.  Somehow though, whether it was because she was a woman at a certain time in history, or because she preferred to let my Dad shine to the outside world while she was his emotional support, she received much less attention for the remarkable life she lived (and continues to live) than he did.  She’s okay with that, completely.  She inspires me more than I can express, because despite all the pain in her life, she has allowed herself to stay vulnerable;  and she’s one of the strongest women I know.  She never chose the easy path, never shied away from any challenge, spoke her mind even when people didn’t necessarily like her politics.  That’s how you end up with a gay, Jewish man, who survived the concentration camps in WW II. as your best friend and call him your “soul-mate.”  It’s no wonder so many of the guys my sisters and I dated came back to visit my Mom.  She knows how to listen, her heart is completely open, and her strength is like that of a Goddess.

Thank you Mom, for planting the seed that allowed me to hear Brene’ Brown and still (at my age) have the possibility to bloom.  You’ve blessed the earth in every spot you’ve placed  your delicate foot.  The hardest challenge you’ve given me, and it started at conception, is how the hell I’ll ever live without you.  It’s a challenge you’ve been preparing me for, and one you’ve tried your damnedest to protect me from, but one we’ll face nevertheless.  Bless you for bringing so much beauty into my life, and the lives of all those around you, especially your family.  I bow to you Margaret Eunice Hartley Hills;  to your wisdom, to your beauty, and most of all to your completely open and vulnerable heart.  Thank you for teaching me that vulnerability is the key to resiliency, and strength.  I love you Mom.