Our Family Story
Written by Kathy Johnson
Almost twenty-five years ago to date our family was blessed with
another beautiful baby girl. Megan made her appearance a month early
which immediately presented a number of challenges. Although Megan was
a nice healthy size, 7lbs. and 21 inches long, her lungs were not mature
and she quickly developed problems that required her to be put on a
ventilator and whisked off to the Neonatal Intensive Care Unit at KU
Medical Center in Kansas City. Megan’s spent 81 days in intensive care
and finally came home to us in Topeka. She was eventually diagnosed
with cerebral palsy and seizures.
Megan was welcomed home by her 20 month old sister,
and of course, a rather anxious, but very happy Mom and Dad. It was
during those subsequent months of many doctors' visits, and early
intervention appointments that I tried to envision my rather fragile
baby’s future. Our families had all been blessed with healthy babies,
how do you cope with a baby whose future seemed to be filled with so
many questions? I often felt, in those days, like no one really
understood how I felt, or why I had so many questions.
One of the things that Megan helped me learn about
myself was that I seek to understand everything as a way to cope. If I
can envision the worse, and put that into perspective then I can cope
with and rejoice if the reality is better. I also learned that my
husband copes in a much different way. He envisions the best possible
scenario and operates on information only on a need to know basis.
It was during this time that I learned about
Families Together, Inc. I jumped at the chance to participate in a
Family Enrichment Weekend. Great, a chance to talk to other parents and
understand what a child with special needs in a family looked like.
Maybe this would help me understand how to put this in perspective.
We attended our first enrichment weekend at the
Lawrence Holidome and I felt like the weight of the world had been
lifted from my shoulders. Meeting other families with children with
special needs helped me feel normal again. I met Chris Curry, who
seemed so sensitive and listened so intently to what all the parents
said, and she loved our children with special needs – truly enjoyed them
for who they were! Chris’s goal for the Enrichment Weekends was simple;
she wanted parents to enjoy themselves first and foremost, as well as
bring them helpful information. I was hooked, I wanted to help.
I volunteered to help with Family Enrichment
Weekends. It became a family event for the whole family. My hubby,
Keith, helped trouble shoot with the hotel facilities. I helped
organize speakers, volunteers and eventually fund raise. Amy, our
oldest daughter was always shy, and liked it best when she could just
hang out with Chris. I certainly have no idea how many weekends we
attended over the ten years, or more. I volunteered and then worked for
Families Together. My volunteer job turned into a full time job when
Families Together became the Parent Training and Information Center for
Kansas. I learned to do the Parents Rights and Responsibilities
workshop, and took parent assistance calls at the center.
I can’t begin to share how much I learned and
benefited from my experiences with Families Together. Life long
friendships, so many people that I admire became friends, and many
memorable experiences. Megan turns 25 this year too, and just started a
new job. She is doing what she is passionate about - working with
infants as a teacher’s aid at a child care center for teen mothers. I
have worked at TARC, INC. as the Shawnee County Infant Toddler
Coordinator for almost fourteen years and three years ago began working
as a consultant for Community Action Head Start as well. Our shy little
Amy finished the first two years of medical school and just passed her
medical exam boards and will begin doing her clinical rotations. Amy
describes one of her first memories as seeing her sister in the neonatal
intensive care unit. Her goal is to become a neonatologist, but first,
will bring her own little one into the world in September. Keith and I
are so
looking forward to being grandparents!
So, Happy 25th
Birthday Families Together, Inc. and to borrow a well known phrase. . .
thanks for the memories
