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.
Hailey's 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.
The 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.
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 morning.
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^