I’m sure you are shocked, scared, overwhelmed and grieving – I know I was. I was 11 weeks pregnant the first time I heard that my baby might have Down syndrome. It was confirmed at 18 weeks. I considered terminating my pregnancy, but I was lucky enough to have well-informed medical professionals and a local Down syndrome association who helped me to learn about the realities of life with Down syndrome. I know though, that many people are provided little to no information, or incorrect information. There are several great websites that can help you find out more, including ndss.org and nads.org. They will help you find support and can give you lots of factual information. But you can start here with a few of the most important things to know when receiving a Down syndrome diagnosis.
First, please understand that this does not define you, your child, or your family. My family is normal. We have exciting Christmas mornings and nervous first days of school. My kids play and laugh and fight together. We go to parent-teacher conferences and way too many after school activities. We have barbecues and birthday parties. We have tons of friends. It may seem impossible to you now, but Down syndrome is merely a footnote in your family’s story.
This next part may be hard to hear but… You are not special. Well, maybe you are special – I don’t know you. But that’s not why your child has Down syndrome. I am a regular person. I yell at my kids, I swear too much, and at times I feel overwhelmed by parenthood. I’m not a saint. You were not given this child because, “God knew you could handle it.” Anyone is capable of raising a child with Down syndrome. If I can do it, you can. Parenting works like this: Take things one step at a time; what you don’t know, you learn; love your child. None of that changed just because my child has Down syndrome. She makes me laugh, she drives me crazy, sometimes I am AWESOME… and sometimes I screw up – just like with my other kids.
However, you will become a better you. Becoming a parent changes you, and becoming a parent of a child with a disability is even more affecting. I had a much narrower view of the world before my daughter was born. I now practice empathy instead of sympathy, and I judge people by who they are, not what they can do. I’ve opened my life to include people I never noticed before. I stopped letting fear of saying the wrong thing prevent me from getting to know all different kinds of people. I don’t value my journey by where it ends or how quickly I arrive, but by what happens along the way. My world is bigger, my life is fuller, my heart is freer, and I am happier because of this change in perspective.
Finally, and most importantly, you are not alone! There are hundreds of thousands of families in the U.S. who have taken this journey – millions worldwide. You really need to meet some of these people! We have been where you are and we are living proof that life with Down syndrome is not much different than life without it. You can contact your local Down syndrome association or join an online group and talk with someone who understands. We are here to support you.
I’m not saying life with Down syndrome is all rainbows and unicorns – but life isn’t all rainbows and unicorns. As someone who’s been where you are, I just want you to understand this: My life is good.
If you already love someone with Down syndrome, please share anything else you wish you would have known when you first met them.