By Kathe Doremus
The 2016 Bowl-A-Thon is a celebration for the Doremus family. It is difficult to believe that 25 years ago, we were facing one of the most challenging times for our family following the birth of our daughter, Kerry, in August of 1991 and the shock of being told she had Down syndrome. As I worked my way through the pain, fear, and mourning for the daughter I thought I would never have, I found “National Association for Down Syndrome” in the phone book — yes, a lot has changed in 25 years — and made a call. Who would have guessed the powerful impact that one call would have on our family these many years later? To consider the relevance of this, when I was told my daughter had this genetic anomaly, my world was turned upside down. I lay in my hospital room waiting for someone to tell me she had to be put in an institution, I cried, I cursed God for punishing my innocent child for whatever I did wrong, I questioned hers AND our future, and tried to come to terms with the dichotomy of feelings I had — I adored my most beautiful little girl, but grieved for the child she would never be, the experiences she would never have. I had no idea at that time of the most amazing person she would be — it was the beginning of a journey.
A woman named Peg Nemec was the voice at NADS when I made that phone call, and she told me that it would be okay — she had a son with Down Syndrome, NADS offered resources, and with the amazing enthusiasm of Peg (may that dear, awesome woman rest in peace — what a legacy she leaves behind), she invited us to participate in the Bowl-A-Thon. Kerry was seven months old when we went to the Stardust Bowl for the first time on a March Sunday in 1992, my husband Dick and our sons, Dan and Bobby were 3 and 4, and we had no idea what to expect — a little timid I was, afraid, protective, and still mourning. I cannot express the magic of that day. We were accompanied by family, neighbors, friends — all who had surrounded us with their love and support — and with our beautiful baby girl in my arms, I was able to realize for the first time what our future truly held. At that event we met another amazing woman who would become my coach, mentor, and inspiration — Linda Picchi and her young daughter, Angie, along with Sheila Hebein, the then Executive Director of NADS, all who brought inspiration, reassurance, and a sense of warmth and community. We met parents and children and families and friends of families — and I knew, then, that I could do this, WE could do this, SHE could do this, and it would be fine. That Sunday, and all the other Bowl-A-Thons since, we have been overwhelmed with the beautiful faces of people with Down syndrome in attendance and the joy shared by all the families and friends who love them, gathered in the bowling alley for a few hours every year. We are all inspired.
This year will be the twenty fifth year that our family has gone to the Bowl-A-Thon to support NADS. When we first participated in 1992, our boys were little guys, our Kerry was an infant, and we brought our family and a few close friends. Through these twenty five years, we have bowled with so many people who have surrounded our lives with goodness — our family members, life-long friends, neighbors who became integral parts of our life fabric. The bond of the people who have supported our family through this journey is amazing — and the number of people who have been touched by our daughter is even more incredible. The first year, I held my baby girl in my arms and asked others — what can we expect, what will she do, how will I do this — and now each year that we attend, we see new parents coming to us and asking the same questions, looking for reassurance, support, hope. The Bowl-A-Thon and NADS give us all hope at a time when we desperately need to have hope. In our years with Kerry, the world has changed drastically, there is so much more knowledge, awareness, possibility — but that personal first step, that painful first step, will always remain the same — can I do this? Can I be the parent of this child? Am I strong enough, brave enough, and who will help me when I fall down? NADS has brought so many of us together to help answer those questions, and the Bowl-A-Thon is a small way we can give back to the organization and reaffirm that we are all the things we need to be, because our children with Down syndrome are strong enough, brave enough, and they are resilient when they fall. Kerry is my hero as she faces her challenges head-on, never gives up, and has held me up so very many times when I have fallen.
Through our involvement with NADS over these past twenty five years, I have learned how to be an advocate for my child, and more importantly, how to teach her to be an advocate for herself. Twenty five years ago, NADS threw me a lifeline and taught the Doremus family how to travel this road with joy, faith, and belief that our world was a better place because Kerry was a part of our family. The Bowl-A-Thon has been an annual benchmark for us, and a celebration of our journey with those who mean the most to us. The Bowl-A-Thon each year, offers us the promise of the onset of Spring, the promise of a future for those with Down Syndrome and the joy of sharing that future for those of us who love these remarkable people!
On a snowy Sunday this November, I brought Kerry to the NADS Kick-Off for the Partnership Advocacy Council and saw all the young adults that were born around the same time — as they spoke about the importance of THEIR voice, THEIR self-advocacy, THEIR life choices, I was moved beyond description and in awe of how very, very far we have come. As Kerry and I walked out the door and I asked her what she thought of the gathering, and she responded “It was kind of awesome” — I was overwhelmed by the power of NADS and the impact of these amazing people with a “little something extra” and humbled to be part of their world. The last twenty five years have seen a monumental shift in how the world perceives people with Down syndrome and we, the Doremus family, and Kerry, are so blessed to have been a part of this, benefited, contributed — to have seen the difference, felt the difference, made a difference. Our family looks forward to being here, hanging at the Stardust Bowl on the first Sunday of March and welcoming Spring — for another twenty five years — and oh, what a world we will make for all of us!