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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. |