Aislinn's Treasures Conversations Sprinkled in Diamonds
by Michelle Voss-Shelley

 

It's about the one year mark of discovery of Aislinn’s abuse by a home healthcare registered nurse. Not something I will be celebrating...not something Aislinn is healed from...not something I am healed from. Damn it!

 

Over the last year much energy has been spent seeking and applying ways or different methods to put the horrendous events behind us.  I am not sure we will ever be 100% healed.  

 

The guilt is insurmountable.  The nightmares still haunt me at night. Flashbacks of the videos are imprinted in my brain forever running like the scariest horror film. I cry easily. I am spent.

 

I can talk about it freely now that justice has been served in the eyes of the judicial system.  Some how probation, a few hundred hours of community service, psychological evaluation, and VOLUNTARILY surrendering her license as a register nurse is justice.    With a box of tissues handy or a warm hug, I share the crippling journey with those curious enough to ask.  Chocolate is a must too.

 

I recently spent time with several beautiful families with the same genetic miscoding that Aislinn endures everyday. Pittsburgh, Pennsylvania is such a lovely place. Aislinn would have loved holding hands, giggling or having dinner with her special friends like Olivia, Leila, Layla and Bryson.  She would have beamed with excitement if she'd had the opportunity to met sweet Hunter, Owen, Sofia, Torri and the others. Aislinn would have enjoyed her first time on a river boat listening to someone tell us about Pittsburgh.  I missed my family dearly over the 48 hours I was gone. I am heartbroken that the time and money that was not available for my family to come because  resources have been redirected to care for Aislinn.

 

I am terrified of ever hiring another nurse. My trust in the system has been taken away from me.  The guilt that I failed to protect Aislinn from the abuse looms over me like a heavy cloud of steel.  I am in survival mode dragging myself through the day.  I am weathered and beaten like an old shed or broken path. 

 

 

 

I am stuck. Word to the wise, do your own background check my beautiful tribe!

 

This year, I missed the beloved fundraising bicycle ride through Copper Mountain because I have been robbed of time and energy for training and more.  My five year riding streak has been broken. This year, $10s of thousands of dollars were raised by my beloved teammates for a special project in hopes of treating tired mitochondrial.


 

 

I carry so much guilt.  I am hoping with some help I might see things differently.  I have lost so much.  I am exhausted, but some how, I "grin and bear it" with coveted conversions with my sparkling diamond friends.  You know who you are...

 


In love and strength,

Michelle Voss-Shelley

(Mom to 10 year old Aislinn living with GRIN1)

 

Aislinn's Treasures Out of Session
by Michelle Voss-Shelley

I recently supported the movement of a new bill that would require fingerprint based background checks for various medical professionals. I supported this bill as a movement to protect Ailsinn and others from brutal physical abuse, sexual abuse, and the misappropriation of medication while under the care of a nurse, CNA or other medical professionals. As you may recall the name of this bill was The Patient Safety Act. 

 

It was a positive experience to have had the opportunity to work with a lobbyist, other families who have suffered mistreatment or even death of a family member due to neglectful, abusive, or dangerous care from a licensed medical professional, and another government agency.  My testimony was empowering, moving, and influential. Tears flowed from my eyes as I recounted Aislinn’s damaged and failed medicine port, multiple bodily bruising, bloody lacerations, ruptured inner ear tissue, and wounded head on Aislinn’s medically fragile body.  I shared her contiuned PTSD due to her abuse.  As others listened to my testimony, tears flowed from their eyes as I describe the violent and abusive care Aislinn endured at the hands of a licensed home healthcare nurse.  No one should suffer from abuse!

 

I know many families with At Risk children, parents or siblings that would have been further protected under The Patient Safety Act. I imagined a sense of peace of knowing the person caring for them did not have a criminal background. This is my utopia. 

 

I could just scream and ROAR because I recently learned that the bill for The Patient Safety Act was lost in the Senate after making its way the through the House, Finance, and Appropriations! See https://leg.colorado.gov/bills/hb17-1121. If the safety of your loved ones or At Risk family member is important to you, I would ask that you reach out to your local senators and representatives. Now is the time to further bend his or her ear. They are of course "Out of Session" now and should be available to speak with their constituents. 

 

As I understand it, current legislation will sunset next year which impacts certain out of state medical licensing. What a bummer because there is already a shortage of skilled nursing in Colorado. The Patient Safety Act would have amended current legislation keeping license protability intact.

 

I am sorry Aislinn. I failed you in this most recent Session. I'll be back because it’s painful to see you continuously suffer and re-live your trauma and fear of the lift system and changing table. I am never Out of Session. I will continue to work on legislation and ways to protect you and others from the Monster and those like her. 

 

Love, 

Michelle Voss-Shelley

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

(butterflyicebaby@gmail.com)

Aislinn's Treasures When Superman Visits
by Michelle Voss-Shelley

 

Hi it's me...Aislinn. I am pretty sick these days.  I am also recovering from major spinal surgery too. I had two metal rods surgically placed along my spine. The pain sucks and now I am back in the hospital because I cannot breath on my own. I miss school, my big sister and my pets. Mommy and Daddy are exhausted and scared.

 

 

Recently a caped friend flew down to visited and protect me.  It was so good to see him! 

 

 

 

 

My caped friend said these machines will shake my booty!  Well, actually they will shake and pull out the fluid and infection in my lungs when I get home. Whenever that will be.  How did he know I was going to need these machines only weeks down the road? Was my caped friend a superhero or angel...

 

 

My caped friend brought me smiles. I really needed to turn my frown upside down.  

 


When I get out of this joint, I am going to have the biggest party!  I will swing and giggle with my caped friend, his parents, my friends and the rest of my family.  I promised my friend...Superman...that I would giggle loud enough so I could be heard out of this world. 


Oh right...my caped friend is Superman and when he comes to visit, he brings me strength, light and love.  

 

Love, 

Michelle Voss-Shelley

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

(butterflyicebaby@gmail.com)

 

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)