Everly's Story

 “The measure of a life, after all, is not its duration, but its donation.”  -Corrie Ten Boom

On January 26, 2015, Everly Marie Hopkins left her earthly home to be welcomed into heaven.  She forever fell asleep in the arms of her mommy with her daddy and Nana right next to her at the Children’s Hospital of Atlanta.  She was held tight by the three of us for that entire day and then for the 8 hour trip from Atlanta to Tampa.  She then returned to our family home four days later and was loved, held and cherished for two more days.  It was a wonderful, healing time for us.

Everly’s is a story of hope, joy and love.

Everly, aka Sweet Pea, was born on February 20, 2014, the only girl in a family of two boys.  Her birth and life experiences were planned for her before she made her appearance.  We looked forward to sharing with her all the activities and pastimes that made our family who we are.  We delighted in the new shades of color sprinkled throughout the house; colors that would soon become a mainstay.  We reveled in the fact that we would have this little baby girl to introduce the world to and we couldn’t wait to do it!

However, five days after her birth, time seemed to stand still.  As the doctor spoke, her words rushed by our ears.  A feeling of loss suddenly swept over us.  Our newborn daughter, she quietly said, had Trisomy 18 and would likely pass away any day.  The best thing, she advised, for us to do at this time would be to take our baby home and love her until the end.

We did indeed take her home and we enjoyed 11 months and 6 fun-filled, love-laced days with our baby girl.

Everly Marie Hopkins was given a “death sentence” according to the medical textbooks.  With her terminal diagnosis, her days would be numbered and her life short.  She was diagnosed with Trisomy 18, also known as Edward’s Syndrome, a rare life-limiting genetic condition.   Doctors consider this diagnosis as “incompatible with life.”  An additional 18th chromosome is attached to the cells in the body.  It means that the extra 18th chromosome causes life ending biologic conditions with the heart, brain, lungs and/or other organs.  It is an early death sentence.

After 15 days in the NICU, we came home under hospice to love and comfort little Everly.  A week after her homecoming, she was struck with pneumonia and a collapsed lung both of which would be dangerous for any newborn but for her fragile body, even more so.  We thought her time had come, we wept, steeled ourselves for that eventuality.  However, EverBaby, another name by which she was known, along with God had other plans for our girl and she fully recovered within a week.   We moved forward with a new sense of hope and joy in our life.

Not knowing how long we would be blessed with our little girl, we knew we wanted to make the most of every day and every moment with her.  Everly had her very own “bucket list” of activities and experiences we began to check off this list little by little.  She dipped her toes in ocean water, cruised around in a bike carrier, hiked our favorite trail numerous times, hiked the Appalachian Trail in Roan Mountain, Tennessee, tasted ice cream, shot through the water in a boat, rode in a Ferris wheel, saw fall colors in Georgia, celebrated every family members’ birthday, enjoyed Christmas lights, embraced her daddy at a Daddy/Daughter dance, visited Nana and Papa’s house, had a princess party, sported painted nails, went to church once, participated in a Nerf war with her crazy brothers and had the honor of being driven to the funeral home by her biggest brother!  Just to name a few.  She, indeed, had a lifetime of love squeezed into a short amount of time!

Intermingled through all of these seemingly light-hearted days were the hard facts about her Trisomy 18 condition.  Everly had a laundry list of medical issues that presented concerns for her on a daily basis.  She had what doctors told us was a “very large” VSD, or hole in her heart.  She also had severe pulmonary hypertension which became a central issue at the end of her life.  There was always an understandable concern about her lung pressures, the work her heart was doing and the toll her body was taking because of it.  Her other medical issues were also cause for concern and could as well have been life ending at some point.  Early on she had central and obstructive apnea which required a daily dose of caffeine, or her “cup of Joe”, as we liked to joke.  Later on, she outgrew her central apnea but the obstructive apnea then required nightly use of a bipap to keep her airway open and blow off CO2.  While we were able to enjoy a relatively machine-free life for most of her 11 months, the last three required oxygen. Due to her physiology, she had severe feeding restrictions including being fed solely by an NG tube (nose) tube her entire life.  This was uncomfortable and required reinsertion should it come out which it regularly did.  No doubt, this little fighter had much against her from the beginning.

Ever the superhero that she was and with God’s hand, EverBaby survived several close calls in her short life.  Having a low oxygen saturation level, she turned blue on numerous occasions requiring oxygen to assist her and even revive her.  Another time she was hit by a seizure that lasted for many hours, she held on and fought through it.  She also suffered from a pulmonary hypertensive crisis that turned into an ambulance ride another time and an extended hospital stay.  In addition, her body retained a lethal amount of CO2 at one point causing her body to be unresponsive again requiring a hospital stay.  And lastly she was the victim of a pharmacy overdose that caused, yet again, another hospital stay and more missed time from our home life.  So, the title Superhero EverBaby is quite the understatement.

Everly, Sweet Pea, Everbaby, Sweetie, Sissy, Sister, Pumpkin, or whatever name we chose to call her at the moment, had a spirit of joy and happiness that radiated when you looked at her!  Her big brown eyes sparkled and shone with an exuberance that was unparalleled.  Whether she was just waking up or ready for bed, she literally had a twinkle in her eye.  She made all who knew her, even if only through the pictures, come to love and adore her.  She exuded pure joy.  Despite her challenges, she continued to forge through and still smile with that vivacity that she was so well-known for by all.

Our family enjoyed so much with her.  We loved everything about her.  Of course, we loved Everly’s radiant smile and her infectious laugh that came so naturally.  But, boy, could that girl be sassy!  Never one to keep it to herself, she let you know if she wanted to be moved or even not moved.  We cherished every sound, whether it be a cry, a complaint or a laugh.  She made us chuckle each time she raised an eyebrow when she was interested in something.  Always the affectionate one, if she felt you near, she would rub your hand or arm.  There was no shortage in endearing moments that would cause us to fall in love with her all over again.

So many, many things were difficult for her throughout her life and it could have been filled with a long list of things she couldn’t do…sit up unassisted, grasp toys, eat by mouth, etc.  However, she never seemed to be bothered by them so we would not be either.  They did not define her.  Just as Trisomy 18 did not define who she was or what she could or could not do.  Her life was focused on the possibilities as only God knew what His plan was for her.  And unless we saw this blueprint, we would afford her every opportunity we could through various therapies, equipment and specialists.  Though we shunned the idea of heart repair due to the risks early on, nor was it even a possibility at that time, as we approached her one year birthday and that balance began to change, even that became an opportunity we wanted to seek out for her.

As we became part-time residents at the hospital beginning in November when Sweet Pea was just 9 months old, she seemed to take all the changes in stride.  She continued to smile and laugh all the while struggling with a collapsed lung that made intake of oxygen difficult.  Sleepless nights, numerous vitals checks, noises, interruptions…none of them seemed to throw her off kilter.  Between November and January 26, we spent about 2/3 of each month in the hospital.  We made the most of each stay and she certainly made it easier.  Befitting of a baby nicknamed Everbaby, she always seemed to just try to be happy.  She was well-known for her stylish outfits, headbands and her painted fingernails.  She rarely cried and when she did, simply picking her up and holding her, lest she be on the bed alone for a minute, would do the trick.  She truly was the epitome of a happy baby, even during her rough patches.

Everly had a way about her.  The way she could stop a stranger.  The way she could engage a doctor or therapist.  The way she captured people looking at her picture alone.  What a gift she had and what a gift she was to all who knew and loved her!  How blessed we all were!  Family, friends and strangers alike.  We all were made to be better people simply because she existed.  Simply because she was who her Father created her to be.  For she, and she alone, carried a message from Our Father in Heaven and that blueprint we never got to see but yet we experienced through her life.  Our love, Everly Marie, until we meet again…

Everly is survived by family near and far alike that love her and will continue to work to keep her memory alive.  Everly’s legacy will continue to be shared for generations to come.  All will come to know God’s princess by the stories that she left behind to be shared by the family who held her so dear.
We will have a Celebration of Life on what would have been Everly’s first birthday, February 20, 2015 at Grace Family Church in Tampa, Florida at 4:00 p.m.  There will be a visitation open to all family and friends beginning at 3:00 p.m. The service will be live streamed starting at 4:00 p.m. at www.gfconline.com.  In lieu of flowers, donations to cover funeral expenses and remaining medical bills can be made at any Wells Fargo Location or transfer online to the Everly M. Hopkins Donation Account.


1 comment:

  1. Thank you for sharing Everly's story with the world! My niece has Trisomy 18 and just reached her 1 Month birth date. I hope and pray to enjoy many more milestones with her like Everly enjoyed with her family and friends. --Samantha B. SJ,CA

    ReplyDelete