M.I.R.A.C.L.E. Online Books

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Scoliosis Awareness – Cheyenne and Anthony

Medically Inspired Reading About Challenging Life Experiences (M.I.R.A.C.L.E.) Online Books is designed to build a community of health awareness.  We interview parents/guardians who understand the challenges of dealing with a child who has a medical illness, condition or circumstance and manages to cope with day-to-day activities.  Although Scoliosis awareness ended in June, we want to share this special story.  We hope that other parents and families will be educated and inspired and strengthened with the stories we share.

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  • How many children do you have? What are their names and ages?
    I have 3 children. Anthony 7, Cheyenne 5 and Cienna 2 years old.
  • Which child is ill?  Tell us about their illness.
    Anthony and Cheyenne both have Antley Bixler Syndrome, severe Scoliosis and bi-lateral hip dislocation.  Cheyenne also has severe Lung Disease, right diaphragm that’s paralyzed and CPAP dependent during sleep.

 

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  • Tell us about their personalities?
    Cheyenne is extremely shy, an observer if you will.  She keeps to herself, but she just has this smile that lights up a room.  Anthony is very outgoing, with a larger than life attitude.  He’s very independent and loves trying new things.  They both are fighters and NEVER once has said Why me?  They are so brave and inspire so many.
  • Share how this situation has affected you and your family.  How and what has been your biggest challenge?
    It affects our family in so many ways; hospital stays, financially, out of town appointments that we just can’t afford, stress from being away from my other kiddos during hospital stays, Cheyenne and/or Anthony missing school when they have surgery.
  • What challenges have you overcome?
    Anthony has overcome 15 operations, his last one July 2014; Cheyenne has fought for her life since she was born and had her 1st surgery last year due to major complications.  Ultimately, there are just too many obstacles to list.
  • When and how did you explain to Anthony and Cheyenne about their illnesses?
    I haven’t quite gotten there yet.  They do know they are Special and a little different from other kids but they are treated normal.
  • To other parents dealing with the same or similar illness, what advice would you share?
    No matter what let your child know that they are loved and support them 100% in whatever they choose to do.

 

Crystal Leyba

Fresno, CA

 


 

Thank you for sharing your story with us Crystal, your journey displays that of courage, confidence and endurance and I am sure others are encouraged as they read your story.  For any readers interested in knowing more about Crystal’s journey, please visit https://www.facebook.com/theadventurousjourney.

If you know of any other parents/guardians we should feature in upcoming topics, please have them email us at ContactUs@miracleonlinebooks.com.

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Founder – Pat Day-McCray

The first post of M.I.R.A.C.L.E. is here to introduce the founder, as well as the inspiration for this wonderful community, Pat Day-McCray who shares with us the story of her daughter Alicia.

Hello,

My name is Pat Day-McCray and I am a ‘parental survivor,’ after losing (at the time) my only child, to Short Bowel Syndrome.  My daughter Alicia Y. Day died at the age of three due to complications related to her illness.

 

“The Unexpected”

As much as I want you to know who I am, it is more so important for you to know my daughter, Alicia Y. Day.  At the age of 1-1/2 years old, it was discovered that Alicia was born with an intestinal duplication.  At the time of the discovery, over 90% of her intestines were found to be gangrenous and had to be removed; leaving her with a colostomy bag hanging on her side.  Without her intestines, she was no longer able to eat food or drink beverages; she had to be fed intravenously.  In order for Alicia to receive the daily nutrients needed to survive, she was connected to tubing that hung from an I.V. pole for 24 hours each day.  By the time she was a little over 2 years old, she was reevaluated and was gradually weaned off her feeding machine; eventually Alicia was able to be taken off her machine for 8 hours each day.  This allowed her an opportunity to run and play (safely) just as other children her age.

 

The journey with my daughter was like traveling through “The Land of the Unknown.”  We never knew what to expect as each day, week or month had its own adventures.  The nutrients Alicia received caused damage to her liver which eventually led to her eyes becoming jaundice.  In spite of dealing with the unknown, I never felt alone.  I had Christ as my navigator and He allowed us to sail through many rough storms as I trusted in Him, and relaxed in His word.  During the last 10 months of Alicia’s life she was comatose, and quite a fighter; as she surprised the medical staff on several occasions by taking breaths on her own.

 

“I’m Grateful for Our Time”

Despite all of life’s changes, I still remember Alicia as a picture of health, full of joy and quite comical.  God allowed me to embrace my beautiful, happy baby girl for a little over three years.  Alicia gave me something that no other aspect of my life could have possibly given me “someone and something to fight for.”

 

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“The Journey”

I was in my early twenties when Alicia became ill.  I knew of no resources that could help me explain to my daughter the new life we were expected to live.  Not to mention, I needed resources to help me understand our new life, let along explain to my child!  Doctors gave me life-changing information that sometimes had no options.  I had to “woman up” and make what I thought to be best life-saving decisions based on the medical information given to me.  I realized quickly, this circumstance was not about me; everything was about Alicia — and I needed to make the best decisions humanely possible.  Along with making decisions, it was necessary for me to provide a positive environment for Alicia, regardless of the circumstances presented to us.  I became Alicia’s #1 cheerleader in everything she did or was exposed to; I became the supportive, encouraging force behind every finger stick or major surgery Alicia received.

 

During the early stages of Alicia’s hospitalization, I recall one of the worst, moments was being told “Eat in front of her, she needs to get use to seeing other people eat food.”  Although I understood the intentions of the medical staff, they wanted me to accept the reality of this new situation.  However, their strategy did not address Alicia’s emotional challenge.  Unknowingly, I feared my own words; or better yet, lack of words to communicate to my 1-1/2 year old daughter.

 

I was clueless in how to explain to Alicia that she would never be able to eat food again for the rest of her life.  How could I explain to a 1-1/2 year old that she could never eat or drink again?  How is it possible for any parent to explain such a life changing medical situation to a child as young as Alicia?  If I had answers to these questions, or perhaps if communicative resources were made available to me, I could have focused the majority of my attention on dealing with Alicia’s physical health, versus being troubled about her emotionally.

 

What would you have done?

 

Alicia was accustomed to sharing family meals with me; now, here I am on a mission to hide and prevent her from ever seeing people eat again. Needless to say, that was truly an impossible task!  I was up against hospital food deliveries to other patients, or people simply walking around eating snacks or drinking beverages.  Alicia would sometimes say, “Mommie, what do I smell?”  Then I would find myself closing her hospital door to suppress the aroma of food.  Watching television was another huge challenge, as television commercials displayed food and restaurants continuously.  One of my most heart-breaking moments was seeing Alicia’s eyes and thoughts fixated on watching food commercials, then I would see her very slowly, lick around her entire lip (from side-to-top, to side-to-bottom-to-side).  That was emotionally painful for me to see.  It hurt just knowing that she remembered food and had a desire to have food.  As a parent, I wanted so badly to protect her from ever seeing the substance that so many of us take for granted:  “Food!”

 

Alicia’s first hospital stay was, 6 months, 3 weeks and 4 days before being discharged.  In order for me to take Alicia home from the hospital, the nurses had to teach me everything about her care as well as familiarize me with warning signs that I should be concerned about.  I learned all that I could about my daughter’s condition and whatever I could do to prevent any additional illnesses or setbacks.  My experiences in caring for Alicia allowed me to develop a keen and sharp eye to various medical circumstances as they related to her care.

 

In spite of all that I learned, I never learned the correct words to explain to Alicia that she would have to endure the rest of her life without food.  The below questions have always been in my thoughts, and I am sure other parents have entertained the same or similar questions.

  • How do I explain this condition to Alicia?
  • How do I explain this new life style to Alicia?
  • How do I explain to Alicia the multiple surgeries she encountered?
  • How do I explain to Alicia the feeding tube that she would be hooked up to for 16 hours per day?
  • How do I explain to Alicia that she can never intake food or beverages into her mouth again?

 

Alicia saw me as her protector from danger, hurt and harm.  I was the person she ran to for safety in any given situation; whether it was fear or confusion, I was her safety net.  As parents, we are placed in our child’s life to protect, guide and instill moral values in their lives.  Although we embrace this huge responsibility with and for our children, we are not Gods!  We learn as we go and do the best with whatever knowledge we obtain.

 

“Parental Collaboration”

As a parent and a caregiver of my daughter, I soon realized that other parents and I shared a special bonding; a bond that is unique from our immediate family members and close circle of friends.  We have embarked upon a journey that only personal experience can relate to.

 

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M.I.R.A.C.L.E. is dedicated to bringing children, families, physicians, educators and communities together.  We are creating a community of health awareness along with allowing families to share their stories of love and endurance.

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