Done and DONE!

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Laptop down. Reading glasses down. Folder down. Bottoms up!!!

Sometimes when we reflect back on the way our life story unfolds it’s nothing short of serendipitous! Minutes before I finished working on the last insert for the book, Sam arrived home early from his business trip. I ran downstairs to kiss him hello, telling him I had just a few minutes more of work to go to finish the inserts. So back upstairs I went. Little did I know he was stealthily mixing me a martini in the kitchen below, which he then surprised me with saying, “Close your eyes. Ok, open.” Looking at the drink he said, “Here this will take you to the finish line! Congrats my dear!”

Then. If that wasn’t enough sugary sweet love and goodness; as if on some universal cue, my dear friend Michelle called the second I finished typing the last word. I leaned back in my writing chair, the one that has held me tightly, yet comfortably to the task at hand for over the past three years while I listened to one of the voices who has supported me throughout my journey; and happy little tears trickled down my face.

I think this process so simply called writing should have some long eloquent title that screams what it does. But the screaming is in the reaching from paper to another mind, to another heart. It’s in the dancing on paper, the hurting and crying, and hopefully the inspiration and the joy.

It’s an exercise in looking for what can’t be seen. Somewhat mysteriously and through ALOT of emotional and mental hard work – it then feels physical. Yet visceral. That is the beauty, the defiance and the magic of writing. After much hard work, one day I realized that a muscle had developed where I never had one. I felt an inner strength different than before. A three-dimensional life story had unfolded before my eyes.

And at last, and after all – I know what I’ve known.

Here it is! Edited and ready to apply for my copyright! I’ve spent the last several weeks inserting ‘something’ in between certain chapters. Most often (as I’ve just been reminded), it’s the little things that require even more attention than the big things.

Now all the little things and the big things are done!!!!! (Picture me dancing on top of a table!!!)

This book of mine is fully formed with a whole heart, intellect, and, hopefully, if I’ve done a good job; a plentiful and abundant soul.

Next week I will be sending the manuscript off to several entities through various personal and business contacts. If they don’t pan out, I will then pursue hiring an agent and go from there.

Thank you for all of your support! This human being of a writer CANNOT sufficiently express in words what it has meant to me!

Stay tuned for the reveal of the title! Ahhhh I can’t wait to share it!!!!!!!

Posted in Wisdom, Women, Writing | Tagged , , , , , , | 5 Comments

tomorrow I STAND

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I don’t consider myself political. Not at all. I’m not the person that debates politics or tries to change another human being’s political beliefs. But in looking back at my history of advocacy on behalf of children with disabilities, at my core belief of celebrating diversity – I can’t help but speak out.

I’m a hopeful person, but not today. Today I feel nothing but heaviness in my heart. I’ve never felt such a cumbersome sadness of emotion at the changing of the guard.

Why? Because I’ve never felt such shock and utter disgust at watching a man mock a disabled reporter all the while knowing national media outlets were covering him. Knowing that same man was about to be sworn into the highest office in the land.

Why? Because I’ve never felt such sadness at hearing a man speak so disgustingly about how to make a woman do whatever you want. Knowing that same man was about to be sworn into the highest office in the land.

Why? Because I heard a man speak of building a wall not a bridge. Of exclusion not inclusion. Knowing that same man was about to be sworn into the highest office in the land.

Every time I look at him I will forever see him with arms bent in spastic exasperation; flailing about like a middle school bully, showing such disrespect and arrogance toward another human being. The threads of my heart unraveled at seeing and hearing such mockery. And no matter how hard I try, I can’t un see or un hear any of it.

President Obama wasn’t a perfect president. No president ever is. But he was a man I was most proud to call my president. Barrack Obama and First Lady Michelle Obama were fearless leaders who I could hold up to our daughter as role models. Role models of integrity, intelligence, honor, respect for all, character and inclusion.

I cannot say that about –  that same man who was sworn into the highest office in the land. In the past, no matter whether my candidate won or not, I’ve never felt such concern and worry.

But tomorrow is a new day. A new beginning. Tomorrow I will be serious of mind, light of heart and steadfast in my beliefs.

Because the principles on which this country was founded were carried out by Barrack Obama with the utmost sincerity, class and intelligence.  And because America is great – tomorrow my daughter, Samantha, and I will take one step forward and then another and another at the Women’s March on Washington. We will march on behalf of women of all races, creed and color. We will march to promote the inclusion and rights of people with disabilities. We will celebrate diversity. We will march for the rights of people who are gay. We will march on behalf of women’s health care rights. Job rights. We will march on behalf of human rights.

Today I sit and watch in disbelief.

Tomorrow I rise to my feet.

Tomorrow I stand.

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a wonderment

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In the same way I knew it was time to pack up his room years ago, I always thought I would know when the time was right for me. And somehow through the universe I sensed that our son would want it this way. This will be my last memorial post in honor of Preston.

We have arrived at our first big milestone. Today marks ten years since his death. The words ten years sound foreign and raw at once as we acknowledge them. As our hearts absorb the vast amount of time we have been without our son, time has felt both fleeting and forever depending on where we were in the everlasting process of healing.

For me, finishing the book on Preston’s Angelversary year has magnified the intensity and scope of loss and love. As I completed the final pages of the first draft of my book, my two writing pens ran out of ink…simultaneously. One, a gift from Sam and Samantha, Jonathan Adler’s fancy Aztec Diamond ink pen – a bright emerald green, white and black graphic design that literally made me smile when I held it in my hand. It’s ink heavier for editing. The other pen; a sleek silver design almost stealth in appearance with a fine point, was my serious writing pen that seemed to glide over paper. I often held one of them in my hand like they were a natural appendage while I sat quietly contemplating a scenario. I could never have predicted both of my pens running out of ink right alongside the story. I remember feeling complete wonder and thinking what exquisite timing. What an awe-inspiring message I received from the universe that day.

The universe really does speak to us.

And if we still ourselves long enough our hearts and minds will ripen to their fruitful purpose. Listen and silent are spelled with the same letters for a reason.

Love and the breathing in and out of it. Heartache and the breathing in and out of it, and the recovery from both are all part of our life story. And in each unfolding there is value. To look away from each bountiful story is to deny our own truth and risk pushing away our growth as a spiritual human being, no matter the message.

My niece, Romy, referred to our time in Virginia as my exile. She was right. My insight of solitude has shaped me so I could shape words. I’ve been honored and humbled to be their hostess standing at an open door ready to receive whatever came in.

From the day Preston was born I became passionate about writing as if I already knew it would be my dialogue with him, and on behalf of him – on paper. Without fully being aware of the metamorphosis that was arising inside of me, through the years, I began taking incrementally small steps toward one day acknowledging my life’s calling and owning it no matter what anyone said or didn’t say.

I believe that Preston chose me. Not the adult woman who birthed him, but the nasally voiced little girl who had three cleft palate surgeries – too afraid to speak in public, too afraid to cry in public for fear she would be thought too weak. I remember how quickly fear found me the first time I had to speak in front of a group of people, like it had its own tracking device that honed in on only me. Then after his death I ran from writing; from sinking back into three dimensional stories about disabilities and death and grief. So fast they couldn’t possibly catch up to me, I assured myself. Until finally one morning I found what was buried somewhere in between my deepest fear and my deepest love; and I awoke to a new realization…you can only deny your life’s purpose for so long before it crawls up and begins to eat away at you. Threatening to destroy what is already well and established. And eventually, and at last, that transcendent moment when you truly begin the fulfillment of your soul, you feel rise up within you – a wonderment.

This book that has been forming in my head since Preston was thirteen, has been the greatest teacher and I have been abundantly surprised and enchanted by the depth of its lessons. I recently came upon a quote that brilliantly sums up my writing experience. “A Chinese poet many centuries ago noticed that to re-create something in words is like being alive twice.”

There, I did it my beloved boy! I lived your life twice! And the insight your lessons afforded me have made me a better human being.

Through the writing of my book many people have said, “I hope writing this book heals you.” While I know their intention was pure and heartfelt; every time I heard it, inside, I cringed. Rather than a process that ends with a specific assumed outcome, I think of living with grief as being in recovery just like anyone trying to live with a past condition. You know it’s there in the back of your mind, deep in your heart and soul, and everyday you truly live you know you have triumphed over what once sent you crumbling to your knees. To say there’s an end to healing is to say there’s an end to spiritual growth. As a flawed human being I carry various scars that when I look back to their origin I realize, are really scars of love and courage. That invisible grief scar that only I can see runs deep and wide into the whole of my being. It reminds me daily of the magnitude of love for Preston. It also whispers to me, “Go on, live your life even fuller today than yesterday, mom.” And so in honor of our son…I do. And because of the precious love we have for him – Sam, Samantha and I get to live a joyful life with a sense of wonderment.

I wish each and everyone of you a Merry Christmas and a most happy and healthy New Year filled with family and friends. May the love and wisdom you seek find you. Quiet and still. Arms open. With wide-eyed wonderment like that of a child. And may the people your heart invests in invest in you, as well. Be kind. Be joyful. And be you.

Posted in Death, Disabilities, Inspiration, Loss of a Child | Tagged , , , , , , , , , | 11 Comments

What of Love?

So many human hearts are confused or angry or sad or feeling forgotten. So as it always does in sad or joyous times, my heart wrote a poem. As you read, I hope it soothes your heart.

 

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Posted in All lives matter, Inspiration, Peace, Philosophy, Poetry, Writing | Tagged , , , , , , , , , , , , , | 7 Comments

THE ROOT OF THE BLOOM

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I write from the root of the bloom.  In all the messy, tangled places of my soul.  In the darkness that catches fire and spreads to seek the light.  In solitude that sniffs the air for bits of oxygen called words.

I write from the root of the bloom.  In a place no one knows.  Or can see.  Like love until it’s set free.  Mine unto paper. Smoothly and frantically.  Quietly out loud.

I write from the root of the bloom.  Boldly.  In stillness and wonder.  Sadness searches for words.  Joy finds them.

And I am transformed once more.

 

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size matters…

IMG_9084I’m not supposed to be blogging.  I’m really not. At all.

Yet, here I am.  Again.

Why, you ask?  Because I’m a writer.  What does that mean, you ask?

Being a writer means I have control over how I arrange my words on paper.  It means I have an overwhelming desire to write. A lot.  What it doesn’t mean, at least for this red-headed chick, is that I can rid my writer’s brain of a thought once it settles in with a glass of wine and a blankie, like it owns me.

If there’s one lesson I’ve learned, it’s that once this gust of a word storm in my head occurs – it. can’t. be. stopped.

This torrid tale begins with a desk debacle.  A where is Karen going to write today? debacle.  I started writing at the cute little glass top desk I found at a consignment shop two years ago.  It fit my dream.  And so I wrote and I wrote and I wrote.

As I wrote I quickly amassed seventy-five, eight by eleven pages that ran the gamut from the preface to the end.  Realizing my dilemma, I developed a sixteen folder system that efficiently kept all my writing on various subjects at my fingertips.

What does this have to do with anything, you ask?

My tiny little desk no longer held my folders, lap top, iPad and reference books.  It no longer held my dream.  So I adapted as best as I could.  I erected an old card table; one that wore messy painting oops and wobbly legs.  When I looked at it I was reminded of our journey down here…wobbly legs and all.  This also led me to affirm once again, that in the midst of great uncertainty: anything and everything is possible.

And I wrote and I wrote and I wrote.

But every time we had a showing the messy card table had to be put away and then gotten back out.  Writers are strange creatures.  We are also creatures of habit.  At least this one is.  The temporariness of my other table bugged me. As whispers of OCD filled the air.

Feeling frustrated, I took all my writing toys and moved upstairs to our large pub table in the media room adjacent to Sam’s office.

And I wrote and I wrote and I wrote.  Another hundred some pages.

I wrote the death and grief chapters. I wrote the ending.  I even wrote a surprise after the end.  I wrote the preface.  But still…something felt off.

There is no door between me and my husband’s office. Uh huh. Now. He’s not home very often. BUT. Writers are cave dwellers.  We need a space no one has breathed their words into.  It diffuses our creativity the way kryptonite kills Superman’s mojo.  I felt like a guest in someone’s house.  How could I dream mighty words if I didn’t feel at home inside?

There’s still so much work to do.  Probably the most important work of all.

Due to the temporariness of our almost four year sojourn down here – what with the eighty boxes in the garage and another forty in the attic, things have always felt temporary here.

In the media room upstairs there is a DR Dimes table that used to be our dining table, just sitting there all by its lonesome.  It’s a big, beautiful, tiger maple top table.  HELLO!! (This makes me think of Adele and how I can’t wait to go to her concert in October). Ahem. The table.  Its legs are currently black which messes with the feng shui color scheme of my office. Sorry. Eventually I’ll paint the legs charcoal gray.  The interior decorator that lives next door to my writers brain deems it so.

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Today my sweet husband moved the table downstairs to my office.  I can think of nothing better than writing on a table that lived and breathed in Maryland.  My memory place will feel the love and laughter that sat around this beautiful table.  It will be a safe haven for my words until I’m ready to release them out loud. My writing home until we move back to Maryland.

On Monday I will sit myself down and dream mighty words once again.  And while I’m positive this table that comfortably seats six, will be able to house all my writing needs – I know it will never be big enough to hold all my dreams.

Dreams can’t be held.  Only released into the Universe so they can breathe.

ps.  Of course once I’m all settled into my desk, we’ll probably get an offer on the house.  wink wink

Posted in Humor, Inspiration, Life, Musings, Women, Writing | Tagged , , , , , , , , , , , , | 6 Comments

Conquering the Hill

image1I thought I would write a poem as I’ve always done to honor Preston on this, his Ninth Angelversary.  However, on November 21 I had a very vivid dream that told me otherwise.  So vivid I could smell the fresh, cool air like Autumn was waving Winter into existence.  I felt my beloved boy’s soft cheeks and kissed them repeatedly as his hair brushed against my face while I hugged him.  It was as if I had a visitation rather than a dream.  The universe spoke and I couldn’t help but listen.

In my dream, as always, Preston was small.  He was sitting at the top of a hill that looked a lot like my parents’ property on South Mountain where I grew up.  The hill my sister, Julie and I used to sled down.  Sam and Samantha were standing beside him, each wearing their big, signature smiles.  Tucking his chin into his chest, Preston kept looking down the hill and kicking his legs.  I asked him if he wanted to run down the hill.  And all at once I heard a voice I haven’t heard since this bittersweet time of remembrance a year ago – the very first time I heard his voice in a dream.  He excitedly said, “Uh huh.”  So I lifted his body into my arms and ran the length of the hill with him.  Reaching the bottom I stomped my feet and jostled him about, saying “Ta dah!”  He belly laughed.  I felt the bravery and joy of a true belly laugh vibrating through the permanence of the air as if electrons were charging my very soul.  As I turned to run back to the top I noticed several different footprints that ran the length of the hill.  Their various sizes imprinted into the earth claiming my heart and soul for all eternity.  In my dream I stood gazing at the footprints for what seemed to be forever.  And who knows – maybe I did stare at them seemingly for hours as I held Preston in my arms while my body lie slumbering.  That’s the wonderment of dreaming, isn’t it?

Once at the crest I stomped my feet and jostled him about again, and somewhat out of breath proclaimed, “You conquered the hill!”  We all laughed even more, the way we always used to laugh – Heartily.  Our bellies pressing outwardly toward whatever was pressing in on us.

While I never ran up and down one hill with Preston, I appreciate the metaphor that was my dream.  While carrying whatever life threw at us.  At him.  We always laughed.

Equally, I know my dream was about the book I’m ‘carrying.’  And I’m touched beyond the capacity  mere words will allow.  Since writing it I’ve had so many dreams about Preston – far more than before I started working on the book full time.  It’s simply unexplainable in the conventional sense.  But nothing about our red-headed boy was simple or explainable.  Getting so close to what is stored in my memory place was one of the things that kept me from fully immersing myself in writing, years ago.  I thought it would take me to a dark, scary place from which I’d never return.  The only scary place was ‘thinking’ about what might scare me.  Inaction was the scariest thing of all.  My dreams and my writing have only served to enlighten me.

Without giving anything away, I will say that there are many unexplainable things in the book.  This much I know to be a truth by which my heart operates – you cannot look at a single star in the night sky without seeing all the shiny things in your peripheral.  In looking back at our twenty-three years with Preston and being shamelessly vulnerable in my writing; I’ve realized far beyond what I knew before, that love and wisdom forever dwell in all the broken little pieces that light up the sky.  And that is the essence of my book, the truth before us and all the shiny little things that abound.  I’m so happy to say that the book is three fourths of the way done.  I can just about see it all grown up and out there in the world by itself.  I simply cannot wait to share with all of you what my soul has heard.

Be extra kind this holiday season.  LOVE YOUR PEOPLE.  The world is without so many precious souls.

I wish everyone Peace and Love.  Miss you all.

 

 

Posted in Angels, Christmas, Inspiration, Loss of a Child | Tagged , , , | 24 Comments

THE PROFOUNDNESS OF A DASH

Preston Edward Draper, July 19, 1983 – December 20, 2006.  The simple yet profound mark between his birth and death is known as the dash.  Its intention is clear and to the point, it denotes the space between the beginning and the end – determined by how we live our life…our dash.  There’s even a well known poem called The Dash.

In interviewing educators, special ed aides and peers of Preston’s for the book I’m writing, I’ve been moved to tears by the affect his dash has had on those who knew and loved him.  Awestruck by the stories they’ve shared with me, some of which I’d never heard.  Profound moments that changed their lives forever.  We were so very blessed to have had such amazing human beings to teach, love and be a genuine friend to him.

Many people have asked where I am in the writing of my book. I’ve written 150 pages so far, with at least 150 more to go. And I know he’s there in every word I write. Most especially, in the stillness in-between the words. I look forward, with great anticipation, to finishing the educator interviews and moving on to interviewing family and friends whose stories and thoughts I can’t wait to hear.

As I sat at my desk editing a chapter on the first day of December, this poem came to me. I hope you enjoy its inspirational message.

In this season of celebration and joy. And most of all, love. Whether it be love that stands tall in front of you and speaks your name, or eternal love that gently whispers in your memory place – I wish everyone a Merry Christmas and a Happy & Healthy New Year.

Merry Christmas sweet angel. #angelversary

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Posted in Angels, Christmas, Gratitude, Inspiration, Loss of a Child, Love, Poetry | Tagged , , , , , , , , | 11 Comments

Autumn’s Caress

Poetic musings on a gorgeous Fall morning…

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Mot Juste

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“There is no greater agony than bearing an untold story inside of you.”

I’ve been reading the poet/philosopher, Rumi’s works for years.  So I could think of nothing better than to cite some of my favorite Rumi quotes that are relevant to where I am currently in my life’s journey.  I love and embrace his message of acceptance, openness and a universal connection to all things.  I’m still working at being a better observer and an even better listener.  Without a doubt, writing has helped me to experience everyday life in a multi-sensory way.

Writing has enabled me to not just stop and smell the roses, but to physically bend down and touch the delicate softness of their petals.  It’s turned my head to imagine an entire bed sprawled across my lawn.  And to move them from room to room in various compartments of my brain, so I can enjoy them in a different light.

“There is a voice that doesn’t use words. Listen.”

The morning I sat down to write the first paragraph of my book: the one that came blasting loudly into my head, so as not to be ignored, while I was in the shower.  As I hurriedly dried off, scared and on high alert; not yet fully cognizant of what was about to happen.  Panic stricken as I worried I wouldn’t be able to write down my words as fast as my brain was composing them.  A new awareness washed over me as briskly as the hot shower water.  All my senses rose like goosebumps, higher and higher on my damp skin.  In that instant – I knew.  I really knew.  THIS was the beginning of the book.  I threw on a rob, my hair still wet.  Sitting in my new white leather chair my family had given me for Christmas.  Hands shaking.  Fear and excitement pulsated through me like a rushing river of white capped adrenaline.  I reached for my writing pen.

And I heard the voice I had been stifling for years.

That morning.  That magical insightful morning.  I became a listener as well as a writer.

Revealing teardrops punctuated the paper as I wrote.  Knowing in that singular moment the old me had been re-shapened by my words and I would never be the same.  My words, imprisoned for so many years, were finally free.  A series of life events had freed them: this time I knew not to turn away.  I’d acquired all kinds of heavy armor through the years.  Initially wearing it for my protection, it had become itchy and burdensome.  Suffocating.  Like a sweater adhered tightly to my skin on a scorching summer day.  Inappropriate and unnecessary.  But that morning…purified by the waterworks, I sat with my body and mind, my heart and soul: naked and aware.  Enlightened for having listened.

“Why do you stay in prison, when the door is so wide open?”

And so I continue on my quest to sharpen my ears to hear the eerily magical sounds of silence – present only to my imagination and vulnerability.  The words find me easier now, as if being aware and open enlivens what was dormant to my once dimmed eyes and ears.

“What you seek is seeking you.”

In the living of our daily lives we are witness to a host of sensory moments.  The ones we seek and the ones that seek us.  Each and every one – full of inspiration and courage, sadness and pain, laughter and friendship.  And love.  Constants in our ever-changing world.  We step away, we take a breath.  We listen.  And we try our very best to be open to the lessons – free from that cumbersome sweater we sometimes proudly wear.  Knowing that…

It is only in the quiet that we can absorb life’s wisdom.

The next several months I am going quiet.  Initially to pack up the rental and to finish all the last minute to dos at the house.  Then to unpack, to nest, and to breathe in all that I have missed.

I look forward, with great excitement, to becoming reacquainted with objects I haven’t seen in two and a half years.  To merge the old with the new ones that I’ve found.  And to listen to the rhythm  of our new home and location.

I can’t wait to re-open the workings of my book thus far to see where I left off.  To be mindful of its cadence.  And to absorb its wisdom so that I may continue on.  In the writing of my book I’ve been surprised and in awe on several occasions.  One of which has been learning that there is not three, but four characters that exist every time I sit down to write.  First there is myself: the writer.  Second there are the words: the writing.  Third: the shadow, the most imperfect part of me without whom I couldn’t write one single word.  Last and most surprising, there is the book: a character and a life unto itself.     Like a brilliant mentor pulling from me that which I didn’t know existed.  This book isn’t at all what I thought it would be.  It’s much like watching a metamorphosis in real time.  Full of challenges and surprises, all delightful and intense.

A newly discovered sixth sense.

It has elevated my conscience and unconscientious mind to a far greater height than I ever thought possible.  THIS excites my spirit.

My book isn’t just about disabilities, illness and death.  Oh no.  It’s a memoir about life and the living of it despite all odds.  It’s about a family life full of humor, sarcasm and an unsurmountable amount of love, joy and acceptance.  It’s about an unstoppable sense of community.  There’s even a phantom character along with other story lines that are woven in between Preston’s lessons that don’t apply to disabilities at all.  Or maybe they do.

It is my hope that when you read my book you will laugh as much as you cry.  That you will find yourself nodding your head because you can relate  to something I’ve said.  It doesn’t matter whether you’ve loved or known a child with disabilities or not.  This is a story about unconditional love and laughter, unbelievably horrible circumstances, and an unyielding spirit and energy force that, at times, defied logic.  It’s about growth and pain, endings and beginnings.

I need to fully immerse myself in the book so I can experience it from all angles.  So that, hopefully, I can see, hear and feel its darkest, funniest and its most enlightening moments as they appear to me.  My fingers need to scan the creases and dog-eared pages in every one of Preston’s life chapters.  Some pages are turned way down while others just a bit.  Whatever the case, I need to examine and question the reason for their depth.  In the hopes that the simplicity along with the complexity of our family’s life can inspire or touch someone else’s heart.

The idea of this book of mine has been with me for awhile.  Most recently though, it has come to sit within my soul.  This is my calling.  Chills shoot up and down my spine as I say this short but powerful phrase aloud.  Owning a truth that has been suspended inside of me for so long is scary and freeing, at once.  And now I must get back to the full time work ethic that will ultimately help me find those exact words, the mot justes that will best describe an indescribable life.

My silent teacher guides me…and I listen.

“Respond to every call that excites your spirit.”

So here I go into the quiet.  Inward.  Toward my heart of hearts.  My fear and intuition.

To fully owning my gift.

Always keep your eyes and ears open to the wonder of our world.

Listen.

Until next time.  Be well.

And cue the magic.

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