There is so much that having a child with Down Syndrome has taught me over the last 8 years.
There is also so much I have learned from my son and those like him. When I became pregnant with him at age 33, I was so happy. My daughter was going to get a sibling and after 12 years of marriage, my husband and I were going to be completing our family. It was really an exciting time. As my belly grew, each doctor’s appointment brought great anticipation being able to hear his heart and watch him grow on the ultrasound machine. I loved watching him squirm and kick, but that television monitor quickly became a source of pain for me.
You see, I never did any of the early prenatal testing. I was having a baby and no early prediction of genetic abnormalities was going to stand in the way of that! Of course doctors push those tests. They ask you over and over if you are sure. There seems to be a lot of pressure to take those tests. Me, being an older mom and having already gone through one typical pregnancy, where I also did not do the testing, stood my ground and did not have them.
So we fast forward to 34 weeks. Ultrasound scans at my local doctor’s office showed some abnormalities, they sent me to Buffalo to a specialist. She told us that on top of our baby boy needing to have major gastrointestinal surgery once he was born, that his measurements and other factors were pointing towards him having Down Syndrome. I was scared, really scared. Surgery on a newborn seemed so risky. I was trying to wrap my head around that. Then she told me something that haunts me to this very day, “You did not have any of your early testing, you don’t have a lot of options right now.”
Options! What she was saying was, well you are 34 weeks and now you can’t get rid of him. What? Why in the world would someone tell a scared mom that now that her baby was no longer “perfect” she does not have the choice to kill him? Anyone who spends 5 minutes with me knows that my only option ever was to love him. Which I do….fiercely!
I was then sent to another specialist who again did an ultrasound and told me more things “wrong” with my baby and again gave me the options lecture! Apparently, me bringing someone into the world who was not the ideal image of a human being made me some sort of horrible person.
If you think I am an isolated incident, you are wrong. My friend, Abby Ernst, has a beautiful boy named Cameron. She did chose to have the Harmony Genetic Screening and got the call from her doctor’s office while on vacation with family. He told her, “I have the results back. I will give you the good news first. The results for Trisomy 13 and 18 tested negative. That’s good. Those genetic disorders can be fatal to the fetus/newborn. However, your test results show Trisomy 21 as positive. This means the baby is at high risk of being born with Down syndrome.”
She wanted to know what the chance was and he responded “99.9% we got the results Saturday, and I waited until now to let you know, so your weekend wouldn’t be ruined.”
He then gave her what seems to be the go-to line, “You have options. You are early in your pregnancy.”
“Ruined.” “Good news first.” “Options.” The negative tones to the entire conversation left her fearful and in tears. Unfortunately, these conversations take place with doctors throughout the world all of the time. This makes me very sad, angry and longing to expose the truth.
To those doctors I would like to say, Down Syndrome is not a life sentence for the child or the family. Some of my happiest moments were because of Down Syndrome. My son has a smile that can light up a room. He finds joy in everything. He is not a burden, he is NOT a mistake. His life has purpose and meaning. We are better for having him in our lives.
The obvious lack of an education on what Down Syndrome is in the medical field has me mad. How many mothers are frightened and pressured into “options” that go against what they really want? How many families miss out on having a child who can put a smile on your face and make you want to be better? How many babies don’t get to take that first breath because they are different?
This world is made up of many different individuals which I have had the pleasure of getting to know. However, the group of people who I love to be around most are my friends who have Down Syndrome. I never leave their presence feeling down. I get so much joy and encouragement from them. Overall the empathy, work ethic, zest for life, and love for others is unmatched. They also all seem to have a determination about them. I always say Preston’s extra chromosome had an extra dose of stubbornness attached! It serves him well. He is strong and resilient no matter what challenge is thrown at him.
Cameron is now 5 and in Preschool at IU9 Preschool in Port Allegany. He is the proud little brother to Drew and a major source of joy and entertainment to his family. He enjoys being outside, riding his glider bike, playing with his tractors and dump trucks. He loves helping his dad mow the grass and going on four-wheeler rides. Cameron is a big “Charlie Brown and the Peanuts gang” fan! He also plays soccer on the U6 soccer team and will be entering kindergarten next fall at Port Allegany Elementary.
Preston is now 8 and a second grade student at George G. Blasdell elementary in Bradford. He is a wonderful little brother to Kierstin and is her biggest fan when she plays soccer. He enjoys Toy Story, the Wiggles, music and soccer. He learned how to swim on his own over the summer. He loves police officers but he wants to be a firefighter like his dad when he grows up. He is included in mainstream education 82% of the day. He has lots of friends including his best friends Owen and Will. He can read, write, add, and is currently learning subtraction and improving those reading skills. He even wrote me a story the other day!
So to these doctors, please choose your narrative wisely. Your words have power. Know what you are saying before you help shape a major decision in a woman’s life. Get to know someone with Down Syndrome. Tell women how far medical advancements have come, tell them how much early intervention services can help a baby with different needs. Let them know it may not be what they are expecting, but it is not a bad thing — just different. Different is not bad. Differences can be a good thing too.
These boys are not a mistake! Their lives are worth saving. Their lives are worth LIVING!
