21 Stories for WDSD- Stuart

I learned that I was expecting our second child in 2008.  Although I was ecstatic to learn the news, my experiences after that left me with mixed emotions. During one of my early prenatal visits, the doctor could not hear a heartbeat.  Although he tried to reassure me by telling me that we would likely hear it during my return visit in two weeks, the waiting was agony.  Thank God they eventually heard the baby’s heart beat.  Things were normal for a couple of weeks.

I returned to my doctor’s office for another prenatal visit, only to find out that my routine blood work revealed a result that was associated with a less than 1% chance that my baby might be born with Down syndrome. I never really had to make this kind of decision, but I knew that I worked best when I had all of the facts.  When the doctors asked me whether I wanted to undergo further tests to confirm whether the baby had Down syndrome I immediately said yes.

I probably should have been nervous when I arrived for the amniocentesis, but I felt at peace.  After about 40 minutes, and what seemed like an endless amount of attempts to obtain enough of a specimen to conduct the test, the waiting was finally over.  I now knew that my baby boy would be born with Down syndrome.

I have to say that I was overwhelmed with thoughts about what this news meant for our family.  I knew that I was going to bring a child into the world and that God does not make mistakes. I thought that people would respect our decision, but I was wrong.

I wanted to be happy.  I wanted to plan for the best.  I wanted to have support from my friends, family, and physicians.  Instead, I received so much negative feedback about our decision.  Health care providers bombarded me with all of the worst case scenarios, telling me things like “Your child will not walk until age 4 or 5” “ Your child will not be able to learn” “Your child will not be able to eat without significant difficulties”.  I wondered why more people didn’t simply say “Congratulations”  “We are praying for you” “We support your decision” or simply “How can we help”?

Despite the negative words and attitudes that surrounded me, I decided to stay positive.  I faithfully went to my prenatal appointments every two weeks and followed the doctor’s instructions. During one of those visits, I received a wonderful gift.  I saw my baby’s perfect face.  I immediately fell in love with his chubby cheeks, his pudgy nose, and his little fingers and toes. After that day, nothing anyone said could deter me. I loved this baby and I was committed to helping him have a wonderfully fulfilled life.  It didn’t matter what people had to say at that point.  I was keeping my baby.

Fighting through the negative sentiments and naysayers was the best choice I could have ever made. After Stuart’s birth, I connected with Child Find and arranged for services to be provided in our home.  Contrary to what I was told, Stuart walked at 14 months old,   ate everything he was given without any problems, and went to preschool and learned many things alongside other children.

I am not suggesting that all of this was easy.  It wasn’t.  As Stuart entered elementary school, we faced new challenges.  Teachers appeared to be unwilling to creatively meet Stuart’s unique learning needs.  In fact, some members of the educational team made us feel like they did not want to educate Stuart.  These new challenges did not deter me.  I remembered the commitment I made the day I first saw this wonderful child’s face and I did not give up.  Neither did he.

I learned more about special education and the IEP process.  Based upon the knowledge I obtained, I moved Stuart to a learning environment that worked for him.  Today, Stuart is 9 years old and attending third grade.  Most important, Stuart is thriving and learning.  He is eager to go to school and his education team embraces his unique strengths and abilities.

Stuart is one fantastic guy. He keeps me laughing and learning.  If I am having a bad day, Stuart says or does something that instantly brings a smile to my face.  He is truly my blessing from God.

Stuart enjoys reading books, watching movies, and playing video games.  He also loves to play baseball, roller-skate, box, and swim.  Stuart is also a big fan of his brother on the basketball court.  No one cheers for his brother louder and with more enthusiasm than Stuart.

Stuart is a huge part of our family and we love him more and more each day.  He has a smile that will light up a room and a personality as big as the sun.

About the Author: Shelvia lives in Newark with her two sons, Solomon and Stuart. She is board member for the Down Syndrome Association of Delaware. She is often seen leading DSA of DE social events, like the egg hunt and Valentine’s dance.