Our story started 35 years ago. We had waited eight years for the birth of our first child. Just like anyone else carrying a baby, we thought that everything would be perfect. The time finally came for our first child to be born. On May 21st, our little bundle of joy was born, a girl, weighing 4 lbs 8 1/2 ounces. She was adorable.
She was born at a small hometown hospital in Brockport, NY. We spent every minute with her even when they discharged me and said she needed to stay and gain a little weight. After 10 days, we took her home from the hospital. Everyday was a struggle to get in enough food. Her doctor told us he wanted to get her in for genetic testing, but didn't provide the reasoning behind his logic.
We finally were scheduled for the testing. It was very hard to get the blood, but they were finally able to get enough for the test. At that time, we weren't worried. Stacy, our daughter, was still hard to feed and remained small. A month later, the genetics office called us with results. We scheduled a visit but my husband, Dave, was an over the road truck driver and had a load that day. I called the office and spoke to the receptionist. She informed me that it was okay to come alone. My sister and brother-in-law, who was a psychologist, decided to come along.
An Unexpected Diagnosis
That was the day that I thought my life had ended. They told me Stacy had trisomy 18 and she had already out lived her life expectancy. I had never hard of this genetic disorder. They gave me no information and sent "US HOME WITH HER TO DIE! " My husband was on the road and I had to let him know. He called; and I told him that Stacy was going to die. Our friends helped me get to Dave and they continued his truckload. We went home to wait for Stacy to die. One week went by and then a month. We celebrated every milestone with another birthday. We were fearful anytime something different happened with her sickness. Was this the time and was this the end?
Proving Them Wrong
We then decided she had far surpassed her life expectancy and it was time to try and live our life, with Stacy. It was time to prove the doctors wrong. When children are born with trisomy 18, their parents are told they are "incompatible with life.” They are told their children won’t smile or know them. This couldn't be further from the truth. Stacy has shown our family and community unconditional love. Her smile will melt your heart. She will reach and touch your hand and never let you go. She is a teacher to her family and to the doctors who provide her care. I always say, "Stacy didn't read the genetics books on trisomy18, but she sure could help write one." Physicians tell us that our children are in pain; however, that hasn't been our experience. Stacy has pain just like anyone would if hurt or sick. She's truly one of the happiest people I know. She has special people in her life that she reacts to with the biggest smile.
Advocating for Stacy
Stacy had several surgeries from birth to now. We've since become advocates so her voice can be heard. We want to teach doctors that they need to look at Stacy as a person, not as an individual with trisomy 18. She deserves the same care that they'd give to anyone else. This was a challenge in the pediatric years and has become more challenging as she's moved into adulthood. We had to fight for her last surgery or she would've died. Unlike many families, we've never gone before an ethics committee to get a surgery.
Stacy started school when she was six years old. She was the first child to get into this school with a tube. We taught the staff how to perform her feedings. She moved from elementary to transitioning out of school and into an adult program. We were very fortunate. The aide she had at school was willing to move to day hab with her, which helped with a smooth transition.
Stacy was in the community daily volunteering in some capacity. She needed hand-over-hand assistance, but she enjoyed the program. This past summer, she had a major surgery with many complications. Now that she has a trach, she's not able to return to her program. We're looking to start another first for Stacy, get her back into a program with the necessary support she needs while also getting the state to fund this service. Stacy continues to pave the way in our community so others won't have to struggle with these same fights. She continues to live at home. She is close to her brother and her new niece, Andrea, who shops with her most Saturdays and at 18 months plainly says, “Hi Aunt Stacy.”
The Joy of Our Life
Stacy is a joy to our family and our extended family. Being apart of the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) orgnization provides us with support on a regular basis. They are our friends and our family. When we go to a conference, I tell people it's like going to a family reunion. You really want to be there! At this time, Stacy is the second oldest person that we know living with trisomy 18. We're proud of her each and every day. She has taken us on a journey that we'll never forget and though there have been some bumps in that journey, we'll continue on for as long as it takes.
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