Paul's Story: A Life With Down Syndrome

By Lorraine DeForge

I decided to write this book because I wanted people to know that having a baby with Down syndrome is not the end of the world.

Paul's start in life was very scary, my pregnancy was difficult, and he was born premature. We weren't given much hope for his survival, or that he would have any kind of life if he did, but we wanted him to be with us for however long that would be.

He ended up having a very productive life. He worked, learned to use public transportation, moved into a supervised apartment, and was married to his Down syndrome wife for twenty-five years before he passed away.

This book is about how Paul was truly a special gift to his dad, myself, and all his brothers and sisters.

• Language: English
• Publisher: Christian Faith Publishing, Inc.
• Release date: Feb 22, 2022
• ISBN: 9781098099725

Book preview

Paul’s Speech at the Person of the Year Event

Good evening, everyone. My name is Jeff Sutch. I have been a friend of Paul’s for over twenty years. Paul asked me to assist him in thanking and acknowledging the friends, coworkers, and family who have supported him throughout the years and who have helped him become the man he is today.

Paul would first like to thank the ARC of Onondaga and its members for this recognition. ARC has been a part of Paul’s life since he was a child. Throughout his life, they have provided support, both vocationally and with case management. A special thanks goes out to ARC employee Lisa Tifft, who has been a dedicated coworker and mentor to Paul for over twenty years.

There is a term I am sure many of you are familiar with: It takes a village. This term is especially appropriate when acknowledging Paul’s sphere of family and friends. The number of which comprises a very large village.

Paul would first like to thank his many brothers and sisters—Jerry, Patty, Andy, Sue, Peter, Amy, and Amanda. Paul’s good-natured approach to life, his kindness, sense of humor, and ability to be one of the guys is due in large part to the love and support you have given him over the years.

Next, Paul would like to thank his wife and best friend. This August, Paul and his wife will be celebrating their twentieth wedding anniversary. With his wife’s love and support, Paul has been able to obtain a life of companionship, love, and domestic joy that most people dream of. Paul thanks his wife and looks forward to the next twenty-plus years.

Paul would like to thank all the staff of the Team 3 Supervised Apartment Program, who have given him support over the years. This includes members of his clinical team, Tom Goslowski, Amy Roy, Marion Reichart, Josh Sprague, Donna Acox, Jennifer Scarlett, Karen Filapello, and Sarah Meyers. A special thank-you goes out to his Harborside family, Sharon Darton and her husband Jeff, Ro Neri, and Angie Yacano. They have helped Paul live a life filled with fun, support, learning, and a respect for family and tradition. Paul and I may be biased, but we know of no other staff who are as devoted to the individuals they serve as the ladies at Harborside IRA.

Paul’s Story

February 1, 1963—I was six months pregnant for my fourth child. I had a three-year-old, a two-year-old, and a one-year-old. My fourth child was due on April 26. I got out of bed; I was bleeding, and I panicked. My husband called our GP at six in the morning. He came to the house about 7:00 a.m. After he examined me, he said I was not dilating, so I needed bed rest. I tried to get some help from family, but no one could help. So we ended up getting girls from the unwed mother’s home near us. They would stay with room and board. In return, they would help with the children and help around the house. My husband and I had to work, so we had no other option.

After that, I was in and out of the hospital. One week before Paul was born, I was told to stay in the hospital until he was born. I was in and out of labor for a week. They gave medication to try and stop it. On February 21, about ten in the morning, I had one very bad contraction, and he was born in the labor room. I yelled for help, and everyone came running. I could hear people yelling for an incubator. They scooped him up and took him away. I told them I wanted to see my baby, and they told me to wait until Frank got home from work. He was working out of town, and it took him three hours to get to the hospital. The doctor came into the room, and we could tell there was something wrong. He looked like he was going to cry. He delivered the other three children, and he said he was very sorry, but our baby was a mongoloid. We had no idea what that meant. He said the baby might not live, and if he did, he probably would not walk or live a normal life. He said most people put them in institutions and try to forget they had them and go on with their lives.

We told him we wanted to see him, and he didn’t think that was a good idea, but we insisted. They wheeled me down in the wheelchair. What we saw was a tiny baby with blond hair and almond eyes. We thought he was beautiful. He weighed three pounds, three ounces and was sixteen inches long. He didn’t need oxygen, and he didn’t have a heart defect like a lot of these children do. We knew that baby was coming home as soon as he was ready.

It was an up-and-down cycle for about nine weeks. He would gain a few ounces and lose three or four. We were really scared that he