Marie, Taylor and Hailey's older brother Kyle were enamored
by her. Hailey was so easy going and joyful. Little did her family know that when Hailey was three weeks old, life would come
to a screeching halt and devastation would envelop Hailey's entire family.
At Hailey's three week check-up, her
pediatricians were alarmed by her floppiness. "She never really kicks around," Marie cautiously mentioned. Marie and Taylor
had thought she was just really mellow. A world of difference from Kyle, but then again, all children are different.
doctors suspected Spinal Muscular Atrophy right away. After about a week of walking around in a fog and crying all the time,
Marie and Taylor decided to make every second of Hailey's life count and make her as happy and comfortable as possible. They
took hundreds of pictures and video. They watched with bittersweet tears as Kyle held Hailey and sat perfectly still with
her in a gentle embrace. This was about the only time the active two year old could be seen sitting still.
prognosis for a baby diagnosed at three weeks with Spinal Muscular Atrophy is very grave. Although Hailey's family prayed
for a miracle and more time with their angel, Hailey became weak all too quickly.
By the time Hailey was 8 weeks
old, she needed surgery for a g-tube to be placed into her belly. She had basically been struggling to breastfeed and drink
from a bottle for two weeks. Hailey wouldn't have been able to survive one more day without her life-saving g-tube. Marie
was feeding her with a medicine dropper the night before her surgery and could barely focus on Hailey's face because of the
well of tears in her eyes. How cruel this disease was to take away the one thing a mother knows instinctively to do for her
child; to provide food.
Hailey's family hoped for some stress free time for her now. She wouldn't have to worry about
swallowing anymore and could experience life. For a short time that is exactly what happened. Hailey went everywhere: to the
playground, on long walks in her stroller, to gym class with her older brother, to Jungle World at the Bronx Zoo with her
friends and shopping in New York City.
Four weeks after her g-tube was put in, Hailey had an appointment with her
pulmonologist at Columbia. Taylor and Marie had noticed her breathing becoming more and more labored that week and Hailey
was sleeping so much. She was breathing with her belly so profoundly and so quickly, it was as if she were running a marathon
and was exhausted. Her pulmonologist was afraid to send Hailey home for fear that her lungs may collapse. Thus began the longest
stay in the hospital; twelve long days.
Those days were spent getting used to a bi-pap machine. Air could be forced
into Hailey's lungs so she wouldn't have to work so hard to breathe. She didn't need it all the time, nor did any extra oxygen
need to be fed through it. The air entered her lungs through tiny little nasal prongs and could easily be taken on and off.
Hailey took to her bi-pap machine right away and she would snuggle up to sleep with it on just like she did with her pacifier.
After nursing care at home was set up and Marie and Taylor were very comfortable using her bi-pap machine, they gleefully
ran out of the hospital without even waiting for their discharge papers.
Hailey was home for her one and only Thanksgiving
and Christmas. She laid in her bouncy chair during Thanksgiving dinner and went downstairs to open presents with Kyle Christmas
Those 7 weeks from the time Hailey came home from the hospital, until she died peacefully at Northern Westchester
Hospital, were wonderful, scary, stressful, heartbreaking but most of all filled with love. Hailey was surrounded by love
her entire life and she gave so much love in return. She changed so many lives. Those she met and those who just knew of
her are forever blessed to have had such a special angel enter their lives.
Hailey must be running around chasing
dragonflies in Heaven right now. She is no longer held back by the restraints that were forced upon her on earth. She will
be waiting for us when our time here is done, and only then will we truly understand why we were blessed by the grace of an
angel on earth for too short a time. ^i^