I WANT MY MOTHER !!

Today, I launched, put into the world, set free, gave birth to…

THE WALL OF SECRETS MEMOIR OF THE ALMOST DAUGHTER

Releasing a book to the world is known in book talk as “birthing”.  The pain is different but just as real.  I have had to edit and re-edit as one always does and each time it’s brought tears to my eyes.  Not mast cell ones but genuine pain filled ones. I am The Almost Daughter.  I’ve never had a Mother.

The definition of Mother is many things depending on where you look:

a woman who gives birth or has the responsibility of physical and emotional care for specific children

Through the blur, I wondered if I was alone or if other parents felt the same way I did-that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain.  The human heart was not designed to beat outside the human body and yet, each child represented just that – a parents heart bared, beating forever outside its chest.”

 Debra Ginsberg

My emotions are raw today, part mast cell, part pain and sorrow because I, in my sixth decade have never had a mother, never been mothered.  How can that possibly be?  I’ve laid to rest 3 parents and yet have never had a mother…how the hell can that be?

I, myself am a mother.  Not a perfect one by any means. Never having been mothered I had no healthy base to work from.  There was never any question  when I held my baby for the first time, I knew I was in love. I also felt my birth mother’s pain. I knew I would do everything in my power to protect, to love and cherish, to advise, to teach, to do and be everything I would have wanted for myself from a mother. Far from perfect with many mistakes and still there is an amazing young woman in this world that I am proud to call my daughter that radiates pure joy and love.  As flawed as I was as a mother.. she had one that loved her more than life..she knew that, felt that.  I did not.  Therein lies the difference for those of us abandoned, abused, adopted. We had no mother.

I’ve been known to go deep into the greens of the rainforest alone with my little dog.  I go to sit.  I go to meditate.  I go to cry.  Mostly I go to scream, sobbing into the dark hallows of nature…I WANT MY MOTHER….

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I’ve done this for decades.  I searched for decades, weeping on birthdays and occasions that should bring joy.  I grew myself.  Not in the best way but the only way I knew.  I learned to mother myself, sadly not very well but enough to allow growth and survival.  I was the only one there, to soothe, to comfort, to hold tight.  I now know I can survive anything because I have.  With each trauma another layer of protection was added.  You can imagine then, launching a book with my truth in between the covers lays my heart out on the table as Debra says in her quote. Raw, beating on the outside, so vulnerable, so open.

I watch my beautiful daughter with her newborn son and my eyes well up.  I’m reminded of my time with her, how I tried to everything right.  I’d stare at her for hours in wondrous amazement that this little being was so perfect and had been entrusted into my care.  I see her loving him with her eyes, her touch, her heart that is now on the outside wide open, as mine has been.  He watches her every movement, he smiles at the sound of her voice.  He nuzzles into the safety of her scent, her skin, her genetics, her being, and he knows with all of his heart, he is where he should be and that he is so loved.  Even in utero, he knew.

 I WANT MY MOTHER….PLEASE, PLEASE, LET ME HAVE MY MOTHER

We aren’t taught how to be our own best friend, how to look after our hearts, our minds and bodies.  We aren’t taught how to comfort and soothe our broken hearts.  We learn along the way usually at a great price.

We know the pages and pages of studies that document the importance of babes being placed in their mother’s arms or on their chests for that immediate connection, the knowing, the feeling of love and belonging…the foundation for building a solid base for a healthy being to flourish.

 We, the abandoned ones, the adopted ones, the abused and neglected ones feel that disconnect, the unworthiness, the not being loved and protected, the grounding, the roots.  WE KNOW….WE LIVE IT DAILY.

I’m now going out onto my deck, wiping the tears and sucking up as much oxygen as I can so I can scream at the top of my voice…again….

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Adoption & Mast Cells…What’s the connection ?

ImageMast Cells…It’s hard to believe those tiny little cells can cause so much damage, but they do.

 I just returned from a conference where specialists of this rare disease update us on the latest developments in research and treatment.  The wonderful part of this, is that we get to be with others who suffer with this life changing disease.  To be surrounded with the love and validation/support of those who “get it” reaches deep inside and warms the heart..  The information gained is invaluable but the being with your “tribe” is priceless and treasured.

 On the outside, most of us don’t look ill…making this one of those “invisible illness’s” that because people don’t see what’s going on inside, they don’t understand how sick we really are.  

They don’t see the excruciating pain deep inside our bones and joints, the nausea and vomiting along with the BigD, as they call it.  They don’t see the overwhelming fatigue that feels like we are dragging a thousand pound ball chained to our bodies.  They don’t see the flushed face and if they do, they say how good our colour is.  They don’t see the chills and faintness, the swollen eyes and lips or the spots hidden so well.  They don’t feel the urgency and fear when we know its an epi pen moment and we are faced with the increasing symptoms alone and wondering if this time will be worse or if it will be enough.

 They don’t see, they don’t listen, they don’t understand.  How can they?

To be enveloped in the love of your “tribe” is amazing.  The unspoken understanding for quiet time, fun time, support time, validation time is just there.  You needn’t even ask, it’s just there, as if there was an invisible connection between us.  Tears and laughter flow together and it’s all quite acceptable and acknowledged as part of the journey.  A simple smile or a few words of reassurance are given freely, without question because they just know.

I was overwhelmed with the astounding compassion between souls who are all ill.  You can feel the energy of understanding when you walk into the room a little bit slower with red rimmed eyes and swollen lips.

 Such strength and endurance is astounding.  We fall and get up over and over with an outstretched hand there to assist, even if it is from afar.  You learn to appreciate the good moments,  The times you can laugh.  The times you can walk a block or simply get off the couch.  The times when you can eat and not feel sick.  Everyday things that healthy people don’t have to consider. The list is endless.  

I can list the exact moments in time, the experiences, the stressors and traumas that led to my mast cells being bumped up a notch until they went over the edge into the mastocytosis abyss.  Most of us can, and it’s devastating to look back and know things could have been better, different perhaps, had we had the knowledge of what was going on.  Still, we smile for now, for today, another day.

Learning to identify specific triggers is crucial to mastering the act of decreasing degranulation.  Lifestyle changes are necessary. Jobs, friends, family may be lost, The specific foods, the exercise and rest, learning balance and caring for oneself play a huge role of living with chronic illness.

 There is a grieving period when you realize your life has changed forever.  Just as in death and dying, you go thru the five stages of transition.  Denial, Anger, Bargaining, Depression and finally Acceptance.

Meditation is a daily practice for me.  Being mindful of each moment and how you think about it.  The Power of Positive Thinking is probably the most important piece of living well with chronic illness.  If we begin to look at alternatives to western medicine we discover how the body is innately equipped to play a role in the healing process.  How love and community may be more important than any drug.  We need our “tribes” to help nurture and heal us.  We also need to participate with our own self talk and beliefs and not get sucked in to the “sick role” that many want to stay in because it’s more comfortable.  There is no healing there…only suffering and sadness.

So, the title reads Adoption and Mast Cells..

This past week as I was recouping from my travel to the conference I was unable to sit at the computer and write the words I wanted to say.  I began to see the similarities between my journey with adoption and reunion and my journey with mast cell disease.

I could go back over the words above and take out mast cell and rewrite adoption and it would still be  applicable.

.ImageThere is a timeline for both.  It took me  50 yrs to find my biological family and just about as long to put the pieces of my medical puzzle together after finding out about my genetic history..50 yrs of not knowing, not having the pieces to heal both the physical, and the deep adoption loss of the primal wound.

Just as my overactive mast cells have affected every aspect of my health so has adoption.  Mind, body and spirit.  Combined, they were a time bomb ready to be set off during reunion from stress, grief and loss.  Look at how many systems are affected by mast cells and know that my being given away affected just as many parts of me… unknown to me at the time but felt just the same.

To look at me you wouldn’t know I was adopted, nor that I have a disease that is destroying my organs.  It’s all invisible, this pain, this illness, this trauma and yet I have been profoundly changed, altered, broken and torn apart again and again by both.

 I stand tall and fight my battles alone in a world that doesn’t see either.  How could they?

The pain is invisible to most,  The loss and grieving of a life changed, a life not experienced, the 5 stages the same.

I experienced both at the same time and it dropped me to the floor where I lay in fetal position for all that was lost, all that would never be.  Looking back, I see my whole life has been dictated by the search for answers, both to my health issues and my search for my tribe.  For where I belonged.  For where I would get healthy and know love.  In my first memoir Finding Heart Horse, soon to be birthed, lies the story of survival and search.  Little did I know at the time how important that search would become.

As with my mast cell history, so can I identify the specific moments where my adoption altered my life, filled it with heartache and pain, leaving me living in the duality of the adoptee realm of identities.  On the outside I was a well respected RN, working in a high stress job, thinking I was doing the best for my daughter.  I wanted her to have the life I never had, the home, the friends, the stability, the love.  No one could see on the inside there was the unknown.  The trauma filled ghost. The invisible person who had no identity,  The tortured soul who experienced trauma after trauma and yet kept going.

Do you see the connection?

It was the same with the slowly building mast cell disease.  Being diagnosed with many box labels and knowing that somewhere out in the world I would find the missing pieces but until then, I just had to keep going.

That deep knowing that there are pieces missing to the puzzle.  The fear of not being able to find them quick enough.  The devastation when I did find them.  Medical history for adoptees is so important and yet, who thinks of it.  No one except the ones looking to find themselves.

Mast cell disease has it’s own tribe.  Adoption has its own tribe as well.   family was supposed to be my tribe, mine.  Where I belonged.  Where i felt loved, wanted and safe.  There are no stronger people than the ones I have met through mastocytosis and adoption.  To go through what we have been handed in this life and emerge with a smile and strength and an over abundance of compassion and love is mind boggling.  To others, these qualities are invisible.  In the tribes, they are powerful beyond imagination.

The journey to health is not an easy one.

 I am not defined by my illness nor my story.  I stand tall as a survivor and thriver despite the odds.

 I have walked through the fears and pain emerging on the other side wiser, stronger and healthier and will continue to do so.

 I am not invisible to everyone.  Only to those those that don’t want to see.Image

 

 

The Aching Heart

Image       For the last few days I have been re-reading my 2nd memoir  The Wall of Secrets.  I have been deciding on quotes and chapter titles and reading yet again the journey I have taken, so far.

There is an ache in my heart.  One that won’t go away.  No it’s not physical, nor is it spiritual.  I can’t quite describe it.  It’s an ache of loss.  An ache of abandonment.  An ache that ebbs and flows as the tides of the ocean but never quite goes away.  An Adoptee Ache.

A friend recently lost a child.  Another friend lost their First Mother/Birth Mother, as I have.  Lost without the answers.  Lost without the knowing or experiencing a Mother’s love.

When your heart breaks, in love, in friendship, in partnership and most of all in the loss of your mother, its very difficult and painful.  When you are adopted and this happens, your heart is shattered like broken glass.

Modern neuroscience has discovered that the emotional suffering experienced registers in the same place as physical pain in the brain.  When we feel abandoned, hurt, rejected, our bodies react as if we’ve been injured and our heart aches.

We go over and over in our minds what we could have done differently, said differently, acted differently until the point the story almost drowns you in despair.

Loss is the core of adoption.  It’s no wonder we get swallowed up in the dark hole of grief when a first parent dies.  I noticed along the way of my story just how many losses I had incurred before I turned 25.  At least 10.  Ten people that I loved.  Ten people that I knew cared about me.  Ten.  That’s not counting numerous others after the young age of 25.  Each loss opened a door to the ultimate loss.  The loss of my Real Mother.  The mother I never knew.  The mother that never mothered me.  The mother that I longed for, ached for, for five decades.

When you suffer such loss the first thing you have to do is regain your dignity and wisdom so you can bear the aching of your heart.

My wise teachers tell me that we grow most through suffering, loss and betrayal.  Our capacity to lead an authentic and free life deepens. As we work our way through these difficulties, our ability to love and feel compassion deepens, along with the wisdom that will help us in the future.

We need to sit and hold our heart with love and with the appreciation it deserves.  Recognize any feelings of unworthiness, of longing and fear, of loneliness or vulnerablility and neediness .  Feel the soft side, the tenderness along with the grief.  

We carry layers of pain as adoptees.  All of the buried stories of abandonment and loss surface when we grieve the loss of our birth mother or rejection by others.  I could feel it as I was reading my story.  My chest tightened, my shoulders began to ached, my eyes became blurry, my back pained and my heart ached. I had to stop and recognize where my physical pain was coming from and release it with the honour a broken heart deserves.

is this pain who I really am?  Is it my essence, my soul?  Or do I just need to honour it, acknowledge it, open and expand it until I am able to breathe in peace?  

I choose in my meditation to sit with my feelings.  To feel the immense loneliness and sadness when it comes.  I can breathe it all in and within that space, I find peace.  I find my home.

I can recognize now as I look back in written word of my past losses that I am part of an eternal cycle of joining and separating.  That this cycle is shared with all living beings, from all times.  I think of the all the broken and aching hearts there are right now in the world and I am able to breathe with compassion for all of them.

Your heart can teach you many things when it’s aching or broken.  It teaches you that through your suffering you become stronger.  It teaches you that by passing through these trials you will come to learn who you truly are.  You will find what cannot be torn from you, what can’t be lost.  You will find your wholeness and well being.

We learn that people and things are not possessed by us.  They are here for their purpose only.  They come and they go.  Despite our losses we remain whole.  Betrayal and loss tear open the heart.  If we look through the tear we find the wisdom and compassion to go on.

As I put words on paper and see just what I have lived through I also know it’s a process of renewal and healing that may take the rest of my days.  I can now hold my heart with tenderness and love for it has many cracks, and as Leonard Cohen says…The cracks are where the light gets in.

I also know it’s not just about me.  It’s about us.  Life is difficult for everyone.

May all beings have happiness and the cause of happiness

May all beings be free from suffering and the cause of suffering

May all beings never be parted from freedom’s true joy

May all beings dwell in equanimity free from attachment and aversion