The Unbreakable Mother & Son Bond I feature story
As Told To Cassie Graham
Photographed by Jessica Bazen
Joanie Newell
the unbreakable mother & son bond
R
aised in a Christian family, Joanie Newell asked the Lord to come into her life
when she was a young girl at the Methodist church in Lake City. Between
Sunday School, worship services, youth meetings, choirs, and playing music, Joanie and her family were in church each time the doors were open. Joanie recalls,
“The only way our mother would let us miss was if we were scheduled for surgery
that day!” Though her memory is now failing her, Joanie’s mother can still pray
beautifully. When in her presence, it is evident that she loves the Lord. What a great
example she continues to be!
Joanie most vividly remembers her mother’s strong influence during her adolescent years. “When I was in high school, she finally let me go by myself to purchase a
bathing suit. I wanted a two-piece and was delighted to go alone. My mother said, as
I was leaving for the store, ‘If you can stand before the Lord in that bathing suit when
you try it on, you may buy it.’” Needless to say, she came home without one. While
Joanie was in college, her mother sent letters that were more like sermons, which
Joanie shared with the girls on her hall. The letters consisted of what to do and what
not to do. Often in her “sermons” her mother instructed, “Don’t ever take even a sip
of alcohol and always behave like a lady.” Translation: Alcohol and young men don’t
mix. Above all, the most important thing Joanie learned from her mother’s example
was to live for the Lord.
When blessed with her two children, Joanie looked to her mother’s example for
parenting. However, the Lord had special plans in store for Joanie’s motherly role.
She explains, “When you’re getting ready to have a baby, it’s like boarding a plane
to go to Disney World or somewhere with great expectations. Then you realize that
there’s something terribly wrong and you’ve landed in a very different place with a
whole new set of rules!” Joanie’s first son, Taylor, was completely healthy. Her “new
set of rules” came with the birth of her second son, Benjamin, who was born September 24, 1986. Joanie admits that Benjamin was a very special, yet challenging young
boy. The special bond she shared with him is unexplainable. Mothers cringe at the
thought of outliving a child. However, Joanie considers Benjamin’s influence on her
life and faith a blessing from God.
No one expected Benjamin to live to almost 23, because he was born with a rare
blood disease called Argininosuccinic aciduria. The disease leads to high ammonia
levels and severe trauma to the brain, before ultimately leading to death. When she
carried Benjamin during pregnancy, Joanie’s body made the enzyme for him that was
missing from his liver. After birth, his ammonia level began to climb. Once the ammonia peaked to dangerously high levels, Benjamin had to be transported to a hospital
in North Carolina, because the hospital there was the closest place able to perform
special dialysis required to lower his ammonia levels. Because the blood disease was
so rare at that time, McLeod Hospital in Florence had yet to see anything like it.
Benjamin’s brain was affected by the high ammonia level, which caused him to
develop Cerebral Palsy. The arginine he had to take for his blood disease was so hard
on his system that it wore out the linings of his esophagus and stomach. He never
walked or talked except for a few words when he was very young. Joanie had to drive
to Florence constantly for doctors to check Benjamin’s ammonia levels and regular
doctor visits and hospitalizations. Solely dependent on his young mother, Benjamin
was never able to feed or take care of himself in any way.
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As she settled into the reality of having a disabled child, Joanie feared and worried for Benjamin’s life.
The constant level of care was difficult, and Joanie experienced many sleepless nights. He often had
seizures during the night and she was often too anxious to fall asleep. For years, the family took care
of Benjamin by themselves. Eventually, Joanie began to use sitters in the afternoons while she taught
piano lessons and on Sundays while she played the piano for church.
She admits that she went through periods when she questioned God about the hand that was dealt
to her. She had prayed that her baby would be healthy, but he was born with major problems. She cried
out to God in frustration on numerous occasions. “I came to a place of acceptance after God gave me the
strength to take care of Benjamin time and time again.” With the Lord on her side, Joanie was able to accept this special child, and her faith assured her that the Lord would help as she mothered her baby boy.
Despite the blessings of family members, special sitters, friends, and doctors, Joanie recalls that the
toughest part of being Benjamin’s mother was not having the power to “fix him” or to understand what
he needed, because he couldn’t communicate how he felt. During these trying times, Joanie felt the
most joy and relief from Benjamin’s big smile and contagious laughter.
Although his young life was consumed with being in and out of the hospital, Benjamin possessed a
zest for life. He loved to play. His greatest joys were to play with his toys and keyboard. He also longed
to be entertained by others. Benjamin’s laughter could make any heart turn upside down. A minister
friend once told Joanie that her son had enough prayer to save a whole nation. Though not aware of it
at the time, Joanie looks back and realizes that Benjamin’s healing was not to take place on the earth.
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