Aislinn's Treasures Conversations Sprinkled in Diamonds

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.  Damnit!

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

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

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.   

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 dee 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)

Butterflyicebaby@gmail.com

Aislinn's Treasures Out of Session

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

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 Promise and The Invitation

Recovery has been very hard for Aislinn after being abused by a home healthcare nurse.  Blankets have temporarily covered the bruises, healing incisions, and the absorbed the never ending tears. Big sister's hugs offer some healing benefits when visions of The Monster creep into Aislinn's head to haunt her. It will take a long time to heal the mental wounds.

Magical ponies watch over her during the night to help ward off post traumatic episodes and diabilating nightmares.

She has gathered with passionate soldiers who became additional protectors.

She wished upon many shooting stars to stop the nightmares, the panic attacks, the fear of the lift system, fear of the changing table and fear of her own bed.

She has held onto the her mommy's promise to make a her world safer.  She has believed her mommy would follow through to make Colorado safer for all of special needs friends and others requiring medical care.  She knew her mommy's efforts in working with a lobbyist and the Executive Director of the Colorado Nurses Association would eventually payoff.

Many of you reached out to Aislinn and her family asking what you could do to help.  Many of you have already helped. You may have shared or read the 9News episodes or the other blogs about The Monster.  You now have an opportunity to help support a new bill 17-1121 on February 16, 2017 at 1:30pm at the Capital in the House Committee Room 271. Please join me as I testify in support the new bill 17-1121 that will require applicants for initial licensure or certification, as well as current licenses and certificate holders, to submit finger-based criminal history record check for nurses, Certified nurse aides, medical doctors, dentists, veterinarians and much more.... 

Love, 

Michelle Voss-Shelley

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

(butterflyicebaby@gmail.com)