In September 1998, one day before out twin sons 7th birthday, and four years after our daughter was born, our family celebrated the birth of Kevin Thomas Lezynski. He was the long awaited baby brother. He weighed 8 pounds, was 21 inches long, he had beautiful rosy coloring and blond peach fuzz for hair. One look at him and my husband, Jerry and I were in awe (once again) at the happiness a new baby brings. It only took a few minutes for us to realize there was a different feeling in the delivery room. The nurses were quiet, they left the room and our doctor came in. He told us of his suspicion that Kevin had Down syndrome. Our journey was going to be different for our fourth child. Luckily Kevin didn’t have serious health issues at birth but we realized we had so much to learn! In the beginning we vowed to do everything possible to help Kevin, to touch him.
Two or three months into our journey we started receiving services from MARC which was then located in Horsham. We had the unbelievable good fortune to have a teacher, named Connie Viens, who came to our house once a week for the first three years of Kevin’s life. Connie had been an early intervention teacher for a number of years, and it was obvious she was wonderful! Connie was a wealth of information for our entire family. She encouraged us to join parent support groups, a play group for Kevin and Mom, and a sibling support group which was available for our older three children. These services were offered at MARC and we were so grateful. Soon after Connie started her weekly visits we received physical and occupational therapy as well as speech therapy a few months later. MARC was providing all of these services at a time when we could have been overwhelmed. Connie and a caring team of therapists helped us realize that although Kevin would always need a little bit more from us and our other children; we were still the family we were meant to be. We were encouraged to enjoy this baby boy we had been blessed with. Connie was a teacher, friend and mentor all in one. She helped us through many, wonderful, happy milestones as well as some inevitable tears and worries along the way.
As the years through pre-school, elementary and middle school progressed, Kevin continued to learn, grow and thrive. He has a few hospitalizations, was diagnosed with hearing loss and asthma, and was sick with upper respiratory and sinus infections often. Our life was busy with our four children and their various activities. While we tried to give Kevin the extra attention he needed we made it a point to enjoy being a family. Kevin was the “glue” that kept us connected and focused as a family. He continues to help us all appreciate the important, simple things in life.
Kevin is now 16 and a freshman in high school. We are currently involved in the daunting process of transition. We have a compassionate supports coordinator, Sue Mumbauer, who has and will be a necessary part of planning for Kevin’s future endeavors. Kevin has joined the Wednesday night Recreation group for young adults ages 16 and older at The Arc Alliance. The three of us recently attended The Arc fall fundraiser “Back to the Future”. As Connie said to us when she reconnected with Kevin, “this is a WOW moment”. It was special to see Kevin, Connie and other members of the MARC/The Arc Alliance community socializing and having fun on the dance floor!This story of our family journey started by saying how we felt we had so much to teach Kevin. But the reality is he has taught us and many others along the way more than we could ever teach him. MARC was instrumental in helping us get Kevin the support he needed for a good beginning. The Arc Alliance is helping us prepare for his future. As parents of a very able child who happens to have Down syndrome, we don’t know where we would be without the support of MARC and The Arc Alliance. They have been a guiding force in our family’s journey.