Editor's note: Recently, Ashley Engele, a mom of two whose oldest child has Down syndrome, found out she was pregnant with her third baby. Soon after, the Nashville, Illinois, woman was told her unborn baby, like her firstborn, has trisomy 21, more commonly known as Down syndrome. In the four and a half years since her daughter, Rilynn, was born, Engele said she has come to understand Down syndrome in a much different way from when she was pregnant with her first child. This essay is what she would tell her former self about having a child with Down syndrome, something she has the extraordinary experience of doing all over again.
If I knew then what I know now
October is Down Syndrome Awareness Month. I often take the opportunity this month to share facts about Down syndrome and interesting information about our daughter. This year, I have really reflected on the day our oldest daughter was born, what it was like to receive her birth diagnosis, and what it's been like to receive the prenatal diagnosis of our youngest daughter, who is due this spring.
I can still remember it as if it were yesterday. The day our oldest daughter was born and our doctor told us, "We think your daughter may have Down syndrome."
Now, I know there was much more to our conversation, but that one sentence had completely rocked my world and I was unable to focus on anything else being said. The room seemed to have lost all its air, faces turned to blurs and the fear of the unknown crept in. So many questions raced through my mind. The main one was: What would our life be like raising a daughter with special needs?
Four and a half years into our journey with Down syndrome, I can tell you that our life is pretty normal.
Rilynn is just like any other precocious 4-year-old girl. She goes to preschool, loves Trolls, Barbie dolls and her “typical” younger sister. They are best friends, they love each other fiercely, and also have the classic sibling rivalry. We fight over what outfit she’s going to wear, or how she’s going to wear her hair for the day. Most of all, she loves other kids and babies. We knew we wanted to give our girls another sibling at some point if we could.
Earlier this fall, when we found out we were expecting a sibling for our two girls, we were overjoyed. We went through all the routine first trimester screenings and ultrasounds as usual. When my noninvasive prenatal testing blood work results were posted, I immediately checked them.
There it was, right next to the words T21, in bright red: positive. Our youngest daughter would also have Down syndrome. Our hearts sank. This wasn’t the result we were expecting. Similar to our first birth diagnosis, there were tears, guilt, anger, and lots of unknowns. You see, this isn’t the life we had envisioned. We didn’t plan to be raising two kids with special needs. It’s OK to grieve the life you had planned, which did not include two children with Down syndrome. The one positive thought is that we know we can handle this. You see, we already know the beauty of Down syndrome and the sense of “family” that exists in the Down syndrome community.
We know how when we’re having a bad day, one smile from Rilynn can completely turn it around.
We know the extra-squishy hugs that turn our hearts into mush.
We know that when her cute little hands reach out and touch your cheek, you instantly feel better.
We know how she is changing the perception of those with Down syndrome, one person at a time.
If you’ve ever met our daughter, you know she doesn’t lack personality. She can make even the grumpiest or angriest people smile and win their hearts over in an instant.
You see, Down syndrome has shown us a whole new world, a whole new deeper level of love, compassion, and patience.
We know the support we receive from our other special needs moms and that they are irreplaceable. This community is unlike any other. We share similar experiences and emotions.
The Down Syndrome Diagnosis Network (DSDN) is where I first connected with other moms of kids with Down syndrome. The support from other mothers who share the same worries, joys and victories is invaluable. So naturally, as you can imagine, that’s where we turned when we received our latest prenatal diagnosis. I was immediately put in contact with another mother who had a similar family to ours and was encouraged to join a Down syndrome pregnancy support group on Facebook.
The main difference between our experiences has been the support and knowledge we have this time around. We know what health issues to be aware of, we know what questions to be asking, and most of all, we know our physicians will give us the best care possible because we are aware of her diagnosis. Down syndrome is not the end of the world, but rather the beginning of a great new one.
Down syndrome is a beautiful journey we had never planned on, but would never dream of leaving because we know what it’s like. We treasure our experiences at face value, we slow down and enjoy the little moments in life, we celebrate every single milestone (big or small), and most of all, we celebrate life, because our lives are better with Down syndrome in it.