Aislinn's Treasures The Voice
by Michelle Voss-Shelley

 

It is the eve of finding out whether or not the licensed nurse (a.k.a. The Monster) decides to take the case to trial or not or try to make a plea bargain.  The Monster was charged with multiple felonies pertaining to repeat assaults on my sweet Aislinn.

 

I am a wreck!  I am exhausted!  I believe this has been the biggest darkness in my life.

 

It's been nearly three months since The Monster last assaulted Aislinn.  Countless hours have been spent tending to Aislinn's trauma. She still fears the lift system, changing table, wheelchair, and bed.  She still has trouble sleeping.  I can only imagine that she is dreaming of... The Monster?!?

 

We all have worked none stop to sooth and reassure her that The Monster is never coming back.  The Monster will no longer physically harm my defenseless baby girl.

 

It has been a living nightmare knowing Aislinn was tortured by a person of trust.  She' s been harmed in ways that only God and time can heal.  The scary thing is no one knows how much time Aislinn has left on Earth.  Will it be long enough time for me to see the return of the joy and laughter in her soul?  

 

Most of Aislinn's life her daddy and I have been her voice for things like a her right to an education, treatment for illnesses, extensive medical testing, surgeries, selecting a team of expert doctors/therapies, and securing licensed professional care.  

 

We are now The Voice regarding this sickening and life changing event.  The Voice has talked to the amazing local SVU team. Tears of pain and frustration have been shared with the local District Attorney's Office. Has The Voice been strong and loud enough to help maintain felony charges against The Monster?   Guess we will all find out soon...

 

Love,

Michelle Voss- Shelley

(Mom to 10 year old Aislinn living with a miscoded GRIN1)

(butterflyicebaby@gmail.com) 

 

Aislinn's Treasures Zen
by Michelle Voss-Shelley



 
Hi it's is me, Aislinn.  It has been awhile since you last heard from me.  I have so much to share with you.  Sit back and relax because I have milestones to share with you.
 
It seems like forever ago I was trapped inside myself due to illness and rotten nursing care.  Yep, I said it...rotten nursing care.  It was so difficult for me to express myself and even engage in the simplest tasks.  My mom put her energy into finding the best agency and nursing to help care for me. Now I am moving my own mountains.  
 
 
I was well enough to attended my big sister's school play titled 101 Dalmations, and her Continuation Ceremony.   Way to go Alexis!
 

 
 
My scoliosis has been very painful.  Muscle spasms during all hours of the day. So painful I am up all night.  Grrrr!  I really don't want to have surgery to put icky rods in my spine.  It was a relief when my dad discovered a chiropractor that makes house calls. How cool is that?! Dr. V. uses an Activator which feels like a highspeed poke.  To me it looks like a miniture pogo stick...haha! The treatment will take months...so whatever...I am just pleased to say I am pooping without the aide of Milk of Magnesium or suppositories!  A small victory!
 
I have been working really hard on speaking for myself.  Checkout this video that proves it.  Mom cries for joy each time she watches it.  


 
I have gone to every one of my sister's softball games this season.  I think I am a good luck charm. They are undefeated so far this season.  Go Eagles!  I love this Eagles' team player!
 
 
I saved the best for last.  I have been out of the hosptial for 366 days!  I have found my inner peace. I am well right now.  I am sharing a little video that expresses my Zen!  What is your Zen?  
 
Michelle D. Voss-Shelley
(Mom to nine year old Aislinn with a GRIN1 mutation)
(butterflyicebaby@gmail.com)

 

Aislinn's Treasures Copper
by Michelle Voss-Shelley

 

 

There are people in Aislinn's world who make sacrifices for her.  A teacher, a nurse, therapist, or a doctor who must think outside the box. It might be a boss that absorbs part of the work load for any number of reasons.  Well the good ones anyway.  Perhaps it's the other child waiting in the wings.

 

 

Some might say "it's your job" or "that's life" or "life is a b&$@#" instead of appreciating the dedication, energy and solid connections it takes to keep a family together, a good job, and maintain friendships when life gives you a special needs child that requires care 24/7.  I just have to shake my head and say a prayer because I know my life is not for the faint hearted, nay sayers, or negative energy.

 

 

Let's get back to two people who sacrifice the most...her parents. Yeah, David and I. We are the glue or at times frayed threads that keep the family together while frequently being on red alert.

 

 

I like to think of us as Cu. Sorry CU Buff alumni I don't meaning you.  I dont mean Copper Mountain either where I do much soulsearching.  I am talking about the element COPPER. Copper is much more efficient than glue that melts under pressure. Or a thread that can snap when tested because of its tinsel strength.  Copper is strong, flexible, absorbs heat, and withstands the bitter cold.  Its properties help receive and transfers energy.

 

 

Copper is also full of tradition. Did you know that copper gifts are common for a 22nd wedding anniversary?  It's true.

 

 

Imaging a element such as copper celebrating all it takes to be married for 22 years. Pretty impressive these days when under the best of circumstances.

 

 

 

Today is our 22nd wedding anniversary. In a brief and stolen moment tonight, we will be celebrating us. Renewing the energy in our marriage.  At this point in our long arduous journey, we will remember the good things that brought us together.  We will toast to the positive engery in our lives. It won't be about the gifts.  On this day it will be about the strength of our bond as man and wife where no man or woman shall come between us.

 

Much love,

Michelle D.  Voss-Shelley (Mom to nine year old Aislinn with a GRIN1 mutation)

(butterflyicebaby@gmail.com)

Aislinn's Treasures Heroes
by Michelle Voss-Shelley

 

There are many things I have not experienced in life.  They are both good and bad.  I do think that with each new life experience a piece of me has the chance to grow or be bitter about life. 

 

This week was full of challenges.   Aislinn's sleep pattern was off again.  Seizures and muscle spasms were more frequent and painful.    Mother Nature sprinkled record snow fall (18 inches) in my town which caused reduced nursing and brought in the loving support of my neighbors.  In my time of need, different neighbors aided in transportation to and from the airport.  Collectively, this is a whole day favor for me. Another neighbor shoveled my driveway and ramp in the event Aislinn required emergency medical attention.  I was reduced to tears wondering how to repay these acts of kindness.  

 

 

My biggest supporters were sailing the seas.  Aislinn's sister and daddy were off on an adventure on a Disney Cruise. There was a year of careful planning, prayers for no hospital stays, hoarding time off from work, and two year's of saving to make the Disney Cruise possible.  The videos, pictures, and texts came in over seas unveiling a fabulous time on the ship. No doubt it  was living up to its slogan of being "the happiest place on earth".  Look for yourself....

 

 

 

 

 

Modern technology offered encouragement that helped me make it through the days and nights alone.   I began to chant to myself "I think I can, I think I can."

 

I really feel this week was a rare chance to see a different part of life. A life where it would be me and Aislinn against this world.  A test of my strength.  Aislinn had no worries in my abilities.  In the end, she was just happy to have me for herself and to sport her new shirt from the Bahamas!  

 

I know I grew out of the experience.  It enriched my life. How couldn't I? 

 

It brought to light the scary what ifs, a close encounter of my worst fears, and HAPPY memories belonging to a trip of a lifetime.

 

I have a new personal hero due to my recent experience.  This hero faces similar challenges every day seemingly without effort. 

 

Who is this hero I speak of?  This hero is cloaked in humble clothing, an endless well of love and strenghth .  My forever hero is...the single parent of a special needs child.  

 

Much love,

Michelle D.  Voss-Shelley

(Mom to nine year old Aislinn with a GRIN1 mutation)

(butterflyicebaby@gmail.com)

Aislinn's Treasures POOF!
by Michelle Voss-Shelley

In a blink of an eye life can change.  It may be for the better or not so much. 

 

I remember preparing for the birth of Aislinn ten years ago.  She would be my second daughter, a little sister to Alexis, the second granddaughter and second great-granddaughter.  So much to do to get her Looney Tunes room ready.  Murals to paint...a crib to assemble...picking out the outfit to bring her home in...diapers to purchase...and Poof she arrives.

 

What I thought to be a prefect pregnancy would soon reveal my true journey with Aislinn.  My second daughter, a little sister to Alexis, the second granddaughter and second great-granddaughter certainly would keep me busy with specialists, numerous tests, surgeries, and illnesses.  Much to my surprise my idea of sibling rivalry and all that comes with a four person family would ...poof...go up in smoke.

Above photo by Palmer Photography

 

But like with any crackling fire, the smoke clears and the ambers from its energy begin to glow with hope. Hope of delicious s'mores, hot chocolate, or a crispy hot-dog or a circle of heart warming stories.  Poof...life becomes enriched and full again with the uncontrolable laughter while sledding or a cherished friendly snowball fight with neighborhood friends.  

 

 

 

 

 

The opportunities open up for a new normal journey.  I love spring with the renewal of life, butterflies, bumble bees, and flower gardens.  It chases away the cold and dark days of winter still leaving behind its fun.  Wait I am beginning to sound like a BELOVED Disney movie...poof...poof...POOF!!!  

 

 

Aaaaaaahhhhhhhh there it is Spring Break 2016 and loved ones are in the most magical place on earth...home.

Much love,

Michelle D.  Voss-Shelley

(Mom to nine year old Aislinn with a GRIN1 mutation)

(butterflyicebaby@gmail.com)