Down Syndrome has changed my life in the most amazing ways possible. I look at my son and I think “there is nothing more perfect on this planet.” However, there is one thing that sucks about it.
Before you get mad at me for saying that, just keep reading.
John Langdon Down. That’s the guy who “discovered” Down Syndrome. Yeah, it’s named after him now.
“Down” syndrome? Really?
That really had to be that guy’s name? DOWN?!
Why couldn’t his name have been Dr. John Langdon Awesome?
“I want to let you know that your son is showing signs of Awesome syndrome. Here is some information. You will get the genetic results in a week.”
“My son has Awesome syndrome. No, sorry, your kid can’t catch it.”
“Good news! Your ultrasound is showing indicators of Awesome syndrome! Your life is about to take a very interesting turn!”
Most of the people that I meet do not realize that Down is a name, not a bad word. It doesn’t mean sad, low, or depressed. It is just some guy’s name!
I mean, come on. We probably wouldn’t have to advocate so hard if it weren’t for that misleading name. Okay, I know that awesome is not a typical last name, but what about Langdon? I’d take that one!
“Here’s a pamphlet about Langdon syndrome. Basically, your child is going to do everything a typical child can, but just a little later than ‘typical’ developmental standards. So, nothing to worry about! We’re just going to screen him for any health issues.”
See what I mean?
Let’s talk more about the delivery of the news.
I have connected with so many moms and dads around the world since I have started this blog. Many of them share stories with me about how they were told the news in a less-than-desirable way.
Some were told that they should “take care of it” while there is still time during a pre-natal diagnosis, meaning they should abort the pregnancy.
Unless the mother came in with the intent of getting an abortion regardless, this should not be pushed on new mothers just because of their ultrasound results. Sure, doctors have a responsibility to give all the available options, but abortion should not be treated as a sales pitch so that parents can try for a “typical” baby instead. Many of the mothers that I have connected with have expressed this experience, and it made me so sad to hear.
One doctor even said that a mother should “take care of it” because of the high divorce rate of parents with special needs.
What about offering resources instead? Maybe introducing them to other married couples who have a child with special needs, or showing them the wide range of support groups for parents.
Many other doctors that I have heard about in those stories have started their conversations with new parents with “I am so sorry, but…”
What are you sorry about?
Yes, I have expressed that I was shocked and even sad about Nicholas’ diagnosis. Although I did have more knowledge about Down syndrome than maybe some other mothers do because of my education, I did not know that it was named after the doctor who discovered it. I thought that the “down” was representative of something that was “wrong” with the DNA in these cases. Maybe something was facing down that was supposed to be facing up? Who knew?! Hearing that something is “wrong” with your new baby is nothing short of traumatizing.
What if I heard this instead:
“We noticed some markers of Down syndrome on your baby, and we would like to do blood work to confirm it. You are so lucky, because only one in seven hundred babies is born with it. Your baby is not going to just like all the other babies, he is going to be so special. If the blood work comes back positive, we have a ton of resources for you and can support you through this transition as much as you would like us to!”
I know that I am fortunate to not have had to endure any major surgeries or procedures with Nicholas as of now, and I am aware that many babies with Down syndrome do. I know that this is usually the source of the “I’m sorry” in most cases. But, I think we need to fix our initial delivery of the news to the new parents of these sweet miracles.
I hope that Nicholas grows up in a world where people don’t see differences as scary or sad, but more as an opportunity. I also hope that his existence in our community provides an opportunity to others to open themselves up to diverse people. I have already seen amazing things happen in my community because of him, and it warms my heart. There is nothing to be sorry about when it comes to Nicholas. He is growing and thriving, and brings joy with him wherever he goes.
So, don’t let it get you “down” just because you hear about a person with a genetic condition named after some guy with a lame last name.
Look at this kid…
When you see his face, does it make you want to say “I’m so sorry” to me? I am guessing not…
No, you can’t catch Down syndrome, and there really is nothing down about Down syndrome. But, Nicholas does have some things about him that are contagious…
His smile, his giggles, and his love.
*Please share your stories with us about the experience you have had when doctors have delivered this news to you by replying to this post, or messaging us on instagram.com/limitlessnicholas.