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My name is Jacqueline Cannon and I am the mother of a 30 year old
son diagnosed with Sickle Cell Anemia. Sickle cell anemia is a genetic
disorder in which crescent-shaped red blood cells can lodge in blood
vessels, starving the body's tissues of oxygen and leading to infection,
organ damage or stroke. There are excellent treatments for the symptoms
and complications of the condition, and so many research studies being
done; but in most cases there's no cure. My son experienced several
painful episodes, other complications, a stroke, even a few times we
thought we were losing him but in spite of all we never left the
positive focus. To be told this diagnosis as new parents is devastating.
I asked that one word question when faced with something new "How"
"What" or "Why" but began to focus on the positives of what can come out
of this seemingly bad situation. I felt my world had been turned upside
down but I was not going to let this illness get the best of our family.
Little did I know, there were other parents in the same situation as
myself.
At the time I joined Family Support Network, INC (FSN) we
were called Parents Supporting Parents (PSP). One of the previous Board
members had shared her eagerness of being a part of an organization here
who supplied resources, a network of support, and such warmth of love,
nourishment and care with other parents who had experienced chronic
illness through their child or the death of a child. She began to
nurture me under her wings sharing with other parents our experiences,
emotional support, education and care as a parent of a child with a
special need, even outside of this region. When she retired and her
child became an adult doing very well she asked if I would consider
replacing her on the Board. I thought about it; as I was already
networking with other families decided that this was something that I
wanted to continue doing. I joined the board, attended the meetings and
training sessions, received referrals and shared the trainings and
support with other parents. After a few years, due to other
obligations, I had to resign but never left the love of FSN.
Although sickle cell anemia can adjust your home environment
you must keep a positive focus and be prepared for any changes that may
occur to your home life, on top of the other every day operations. I
began to adopt the slogan "Being a Sickle cell anemia PSP is a 24/7 (24
hour seven day a week operation); if you call me at 3 am and I don't
answer hold on I will be there)." Wherever I go I share the FSN
experience which is one of resources, emotional warmth, love, "a
listening ear whatever hour of the day"; why because we've been there
and willing to offer the help and understanding. Today, I have
continued my role back with the Family Support Network, Inc of Eastern
North Carolina as a Board member and Support parent. Our son went away
to college and has learned to cope and strive forward with his handicap.
I still abide by my slogan "Being a Sickle cell anemia PSP is a 24/7 (24
hour seven day a week operation); if you call me at 3 am and I don't
answer hold on I will be there)" trying to supply the resources and
support to any family who feels no one understand.
Thanks Jackie |
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