This is when I don’t know how to be an advocate… Bear with me, friends. I have only been a part of this community of moms for 8 months, and I am still learning the ropes.
Last Sunday, my friend and I decided to venture to the baby clothes store, which is about an hour away from where we live, to get summer clothes for our kids. We packed up our two cuties, and hit the road.
After we spent admittedly too much money, I asked her if it would be okay to stop at Kay Jeweler because it was time for my wedding rings to be inspected and cleaned. Thus began a google maps fiasco.
We drove around for a while looking for the one we believed was close to the store, and then decided to give up and go to the one on the way home. This one is inside of a mall that is on its last leg. It sort of looks post-apocalyptic in there aside from the jewelry store and a sad-looking Orange Julius. It is less of a shopping mall than it is a walking track for the elderly.
We didn’t plan on going there. We weren’t supposed to be there.
But when we got there, my friend’s daughter saw something she needed. The dreaded back-and-forth mall rides. It was pink, it had a steering wheel, it was right up her alley. So, my friend dug out a few quarters, and we watched as her daughter drove the pink truck, which in a deep and creepy voice played the Humpty Dumpty song. Like I said before, this mall is a little outdated.
A few stanzas into Humpty Dumpty, another family joined us. They had a child with them who was probably in her pre-teen years, and she had Down Syndrome. I am not sure if she had her parents or her grandparents with her, but they looked a little overwhelmed.
For some reason, I wanted to say something to them. I don’t know why. My mind raced as I was trying to figure out what to do! The whole point of being an advocate for Down Syndrome is to make sure that people treat my son just as they would any other child, right? I definitely wouldn’t approach a typical child at the mall with their parents to say “hey look at my baby, he has Down syndrome!”
But still, I wanted them to know that I was “on their team” in some way. If I had a “I’m a DS mom” business card, I would have whipped it out right then. Nicholas just laid there in his car seat, smiling up at me, oblivious to these thoughts that run through my head.
As you all know, ever since Nicholas was born, I have had the feeling that all of this was meant to be. I was meant to have him, so that I could share his story and dive head first into this cause. So, the fact that my friend and I were somewhere we weren’t supposed to be, far from home, and saw someone with Down Syndrome made me think that I was supposed to do something. But instead, I stood there, watching my friends daughter finish her ride, and left without saying a word.
Here is why this is significant, because I am sure you are reading this and thinking “okay, so you saw someone else with Down Syndrome, so what?” My friend and I didn’t even discuss it until later in the night long after we had returned home. I texted her, and said that I wanted to write about the girl at the mall. She knew exactly what I was talking about. I am worried that the fact that we did not mention it to one another as, or after, it happened means that deep down it can still be a touchy subject for me.
If the goal is to have our children treated and celebrated as much as typical children, than we wouldn’t talk about it, right?
As I was reflecting on this, I was thinking of my friends daughter a lot. She absolutely LOVES Nicholas, and they basically stared lovingly at each other for the duration of the car ride.
I thought about how, since her mother and I are so close, she will see Nicholas a lot for the rest of her life! She will see Down Syndrome as a normal part of her upbringing. So, maybe, when she sees someone with Down Syndrome at the mall when she is older, she will not think it is weird, or stare at them, or be afraid. She will see that person, and think of her best friend, Nicholas. She may even want to engage with that person, because she sees them as equal. As of right now, all she knows how to do is to treat Nicholas with kindness!
This was the second time I had seen someone with Down Syndrome with this friend. The first time, I was only still pregnant, and we saw someone at a restaurant who had a baby with Down Syndrome. Right around those times, I was denying genetic testing, and had the list of possible things that could be “wrong” with my unborn baby rattling around in my head. I remember thinking about this baby days after.
So, maybe our visit to the mall wasn’t about me and Nicholas. Maybe, it was about my friend’s sweet daughter, who shows Nicholas more compassion than I have ever seen. I wonder if they were meant to know each other to add value to each other’s lives. I know she has added value to mine already, and I can’t wait to watch her friendship with Nicholas blossom over the years.
*Side note: I bought these sunglasses for Nicholas on that shopping trip. I can not rave about them enough. He loves wearing them, and he tolerates them for so long, so they must be comfy! Not to mention he looks so cool. Here’s the link if you need a pair.