Our Prologue: Reflections of the day my Daughter was Diagnosed.


THROUGH ROSE COLORED GLASSES AND BIONIC EARS

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S.S.Palazzo

6-12-18

PROLOGUE

Sixty One Days.

“…On the night you were born, the moon smiled with such wonder that the stars peeked in to see you;  And the night wind whispered, “Life will never be the same…” – Nancy Tillman

As I begin to write, my mind, like untouched snow reflecting off the sun, has brightly begun dancing volumes.  Although much different than tap and ballet in childhood, this type of groove feels more like sorting through a variation of the Waltz.  Spin, turn, weave, whisk and chasse. A single pair linked closely, creating waltzing waves kissing a tumultuous shore.

Picture that with a Kodak.

Ten with twenty.  

That’s how many years have passed and grays I now have since the compelling desire to draft a self-help memoir such as this.  There may very well be “Chapter Ones” filed amongst my journals and perhaps I may reach for those; in time.

During this journey, while attempting to paint my face with smile lines;  otherwise known as wrinkles, the pen didn’t glide exactly as I had hoped. Yes, folks, pen and paper, simply because my image of writing, since childhood, stems from a deep seeded admiration for the ink bottle and quill. An ode, to declare my independence and remain an original in a world full of carbon copies.  And here I sit, on my couch, typing efficiently, in google docs.

Each time in the past, however, as I would write, my heart seemed to say, “…no, not quite yet…there’s more wisdom to gain before your words may hold depth as the sea is deep.  

“Oh boy, can’t wait! “ sarcastically spoken by experience as well as “my gut”.  

Feelings in the gut. You have had them, correct?  Indeed, a conscious feeling, unfounded knowledge we often suppress defended by excuses we create in our minds. Imagination station can be a beautiful reckless figment.  A decision to move our gut instincts into the subconscious may very well contribute to lessons our inner self may require to reach self-actualization. Just a suggestion, however if relatable, be sure to transfer that lesson into the wisdom compartment of your brain. Fall down seven, stand up eight, but try to fall a different way each time.

Perhaps listening to my gut in this instance & transcribing thoughts into words at the present moment may open the door to help others.  Ultimately, a life worth living lays a foundation upon experience, growth & accessing our personal wisdom to help others across rocky roads.

The gut, being one of the most accurate, innate form of an internal compass, may be something you consider befriending.  Frenemies, at the least. Just saying. No pressure.

Ever wonder why “we” as a blanket societal generalization, pretend as though realities are fictional as though we have the power to influence the path of life & those we encounter.  A great avoidance coping skill, not to be confused with helping a heart who is seeking change. One is an art, the other is an artifact.

How many of us have open our eyes as we stand perplexed in The Land of Ignoring Intuition. A flawed species we unite.

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So, now, let’s take a moment to thank my intuition for consciously guiding me to this moment.  Today, this exact moment and day in time, my heart was meant to envelop a blinky black cursor on a white screen;  with words.

Quite the decoration, as I hope you’ll discover, are the thoughts that flow.  

A hope that sharing our story, thoughts, experience and wisdom, may lead you to a place where you feel you have a neighbor.

“You’re not alone on this Island,” rings Dad’s famous words.  

At the very least, your gears will be turning, money back guarantee.  

Well, perhaps not the latter. Ha.  

Such a gimmick. Such is life.

Sixty one days.

Sixty one days ago, in a 4×8 walk in closet of a room, sat all four of us. Actually, perhaps I may want to rephrase as 29 month olds do little “sitting”.  Your laughter was intended.

Valentina, my “V”, as has become my little nick for her name, was then 1 day shy of 29 months.  Born on the 13th, in the early hours of a rainy morning in November. A Friday, actually, as the Friday the 13th jokes quickly streamed.

My mother, myself and the Audiologist sat together huddled in a circle, while my V played effortlessly without any inclination our lives had changed forever.  I say “our lives”, because I had once believed we are in this together as mother, daughter, father, grandparents, great grandparents, aunties, uncles, extended family, friends and so on.  

Valentina’s life, however, the impact on her life and her life alone, is far greater than anything I have and will ever be able to begin to understand as her mother.  For we know, unless we are the person, we can not feel what someone feels, see what they see and hear what they hear. Pretending we can may be an invalidating injustice.

April 12th, 2018

Karen softly began, “…your daughter is very bright, cognitively intelligent beyond her peers, which is why I think this may come as a shock to you.”

Silence.  

“What do you mean?” I asked as my smile quickly shifted with a heart that sunk well below the floor. Karen’s eyes spoke a tale that I had never read, but recognized as if I had reached the last page.  

“Your daughter can’t hear you,” Karen continued, matter of factly with a tone of concern, paired with empathy, along with an unspoken message of urgency.  

Silence.  

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I feel my eyes welling up and per usual, do everything in my power to avoid water works in front of an audience, especially, my V.  

Karen continued on, briefly explaining V’s initial audiogram results, revealing Valentina tested severely to profoundly deaf in her left ear and moderate to severely deaf in her right.  

“You’re in good hands, but it is important you know, we need to act quickly given her age.  Your life is about to be turned upside down.” Karen stated.

My mind wanted to shout, “Karen, my life has been upside down for three years.

How could God possibly grace me with yet another hardship and yet the most difficult of all?” I wondered, with racing reminders to be present, live in the moment and focus on what is in my control.

“Ok, so what next?” I say as if I practiced my response in the mirror.

Following that day, the Audiology team at Boston Children’s Hospital has been incredible.  No, this is not a plug and no my daughter and I are not receiving a stipend. Ha. The Cochlear Implant Team, who have become more like family, may find that amusing.

Instead, we journey our way through Boston traffic and tax on the miles together, trying not to sweat the 4hr journey roundtrip for an hour long appointment;  with a cooler full of breakfast and pajamas.

From that initial appointment to tonight, sixty one days later, Valentina has attended two sedations to complete a more comprehensive audiogram, an MRI, CT Scan, two psychological and baseline assessments of both V and my ability to parent a deaf child, two hearing aid molding appointment, double digit Early Intervention visits, a primary care appointment, cochlear implant discussions, a third audiogram with her hearing aids, 3 speech and language assessments, a 5K at the RI School of the Deaf paving way to a mommy’s phone that never stops ringing.  

Learning such things exist as “dry boxes” for storing her aids to eliminate moisture (inventor should receive gloating rights on Shark Tank), cochlear implant decisions, research articles, books, YouTube Videos, opinions, unevidenced 2 cents, ASL teachings and the list, which may as well be read upside down, trails on longer than the one for Santa.

Although, loving to catch my nose, V would get a kick out of Rudolph guiding out sleigh.

But, per usual, my V hasn’t skipped a single beat.  She’s adapted to her aids like a champ, dispelling the commotional worries of how on earth we will teach her to keep them in her ears.  That girl, man, she has a way about her. A sixth sense perhaps, compensating for the full, ordinary five.

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Instead, after a few weeks of patience and mommy and Vs “morning hearing aid escapades”, V and I wave Hi to her ears in the morning, sign thank you to them, and count to three while she sits on my lap and I position them snuggly.  Before bed, V points to them when she’s just about had enough, typically 10 wearing hours or so, and we wave thank you and blow good night kisses to her ears.

V’s right ear, responding just about at normal hearing range with the aid, may just be a superpower, eliciting phrases such as, “I love you”, “What is that?” and “I want more.”  

Vs left ear, however, may just be as stubborn as her Little Big Valentina Personality, with an exclamation point in Italian.  

If we would like V to hear sound in her left ear, the determination has been made that a cochlear implant is the only option.  

Enlarged Vestibular Aqueduct (EVA), you are a string of three words where my ignorance once resided.  We will never be friends. You may have robbed my V of her ears, but you’ll never rob our spirit, love, determination, heart, bond and intelligence.  

My V is smarter than you are strong.  

Life that was intended to reach Italy has instead landed in Holland.

Welcome to our memoir, “Life Through Rose Colored Glasses and Bionic Ears”

Chapter I   …TBC

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