I have to admit, before I had Bernadette I was very ignorant in all things related to Down Syndrome. In my entire life, I had only known 2 people who had DS, both beautiful ladies, a few years older than me. One I grew up across the street from, the other from church.
I can honestly say, I never took the time to get to know them. I would be friendly when I saw them, but I never went out of my way to really get to know them. A missed opportunity. Right in front of my very face. Two people, two individuals, two different stories. And I let it pass me by.
The pregnancy with Bernadette was emotionally draining. After finding out her diagnosis, I read a couple of books, a handful of blog entries, and was given handouts from the genetic counselor so I could read up on all the things. Everything from the emotions, the therapies, health complications. It was a lot.
The books I read were personal accounts, memoirs, that allowed me to acknowledge the feelings as I was having as part of the process and to know that there is no shame or guilt in the feelings I was having. It’s all part of it. The other book was more informational. I skimmed through reading the parts that seemed pertinent to what to expect upon bringing Bernadette home. The other information I left for after she was here. I did not want to fill my mind with things about health conditions, therapies, etc. to bring me to a place of even more fear than I was already experiencing.
The basics of Down syndrome are this. Bernadette has an extra copy of the 21st chromosome, which means she has 47 chromosomes instead of 46. That’s it! That is the genetic difference, in her makeup. You either have it, or you don’t. It’s there, or it’s not. This is something that happens “by chance” as one genetic counselor told me, not because of something I did or did not do, a vitamin or supplement I did or did not take. Really, it’s just divine design and that’s all there is to it. There have been articles in the past that have said it mostly happens to women after a certain age. I am younger than the age and I have “met” many moms under that age marker (thank you so social media).
I should also say that just like “typicals” there is a wide range of abilities within DS. I can’t run a 4 minute mile but someone out there can!
Basically, it comes down to this. God designed Bernadette to have an extra chromosome and well, here she is.
To me, I don’t see Bernadette as Down Syndrome. I see her as Bernadette. My third daughter. That is very important to me. She’s not that “Down’s baby” or whatever the lingo is people tend to use when they put her different ability first instead of her. And I definitely don’t introduce my kids as I have two typical kids and one with DS. Nope! I have 3 beautiful daughters. Oh, and my youngest happens to rock an extra chromosome.
And honestly? To me, Down syndrome is the most beautiful thing. Yes, it may set her apart. She has some characteristics that look similar within her community of people with DS. Her eyes are definitely almond shaped, she has the cutest little ears, and because of her low muscle tone her tongue hangs out. Those are things that can be common amongst them but that is not to say that they all look exactly the same. My three girls all look different from each other but they are still from the same genes. I see certain looks in each of them that remind me of myself and my husband. One has straight dirty blonde hair, the other curly blonde hair and then Bernadette who has red hair. There are differences just like in any other sibling group.
For our family, it means we get to experience life differently than we would have without her. The perspective and hearts my other girls have already at this young age. their tenderness and compassion towards their sister and their ability to love her unconditionally, all things that I know are shaping them even now.
For me, I have the opportunity to see life through a different lens. We walk the hard and our days look completely different than they did before she was born. As she grows, I will get to see the world through her eyes, through eyes that are innocent and trusting, that stop and smell the roses more often than most.
It may be a big adjustment and we are still in the thick of hard but Down syndrome in and of itself is nothing to be afraid about. It may surprise you all the things that are so similar to typicals and what they need is love and care, basic human needs, just the same as I do.
***Babies with Down Syndrome. Susan J. Skallerup