One time when Deuce was little, about 3, he became inquisitive about me and Ed having different skin colors. I tried to explain at a very high level how it made him half white and half black. Not satisfied, he replied simply, “No, I’m not. Look, I’m brown.” That one statement made me realize that I never saw him as a color, just my son. I still don’t see him as having a different skin color from me or from Ed, although Ed and I obviously look different. I often forget that Kendall has Down syndrome. I don’t see it when I look at him. It rarely even crosses my mind anymore. Much like Deuce, Kendall is just my son and he looks exactly the way he is supposed to. Honestly, he looks just like Deuce, but with those beautiful almond shaped eyes.
My sister asked me recently if I think people notice when they see him. I told her that yes, I think it is fairly obvious to everyone around us, although we just don’t think about it. As Kendall gets older, becomes more vocal and more active, I notice the stares from other children. I wonder if they are curious about him because they think he’s different or is it just because he’s a cute little toddler. My gut tells me it’s because they know he’s different, and they’re curious.
Over the summer at the pool, I was swimming with Kendall in the shallow end when a young girl approached. She was 4 years old, “going on 5,” as she quickly articulated to me. She was asking Kendall questions like “what’s your name?” and “how old are you?” As I often do, I let him talk but then quickly followed it up by prompting him to answer her clearly, because I knew she wouldn’t be able to understand all his babble. She looked at me and said, “He doesn’t talk good.” It was the first time I felt that dagger through my heart from another kid. The dagger to the heart that I had been told would come. I took about 5 seconds to think before I responded to her, but I swear it felt like 30 minutes passed, with all the thoughts that flew through my brain.
I wanted to tell this little girl to go swim off somewhere, far away from us. I wanted to tell her that she has no idea how hard we have all worked to help Kendall with his speech. Or how he has attended over 100 hours of private speech therapy over the past 2 years. I wanted to quantify to her that we have poured thousands of dollars in to those hours of therapy. I wanted to tell her that he only showed a 6 % delay in his speech on his preschool evaluation. I just wanted to shout, “HONEY, YOU HAVE NO IDEA!” But in all honesty, she hadno idea and there wasn’t any reason she should’ve. To her, he was just another toddler in the pool that she was trying to play with. She didn’t know he had Down syndrome, she just couldn’t understand him. So instead of losing my cool with this 4-year-old, I took the opportunity to teach her about Kendall. I told her that some things were harder for him than they were for her, like learning how to walk and talk. I told her that even though he couldn’t talk as well as her, he loved to swim in the pool and play with friends, just like her. I told her that he would love to play with her in the pool and I could help her to understand what he was saying. She seemed to like this idea and then she responded with a complete sentence, of which I only understood one word. I couldn’t help but laugh to myself as I asked her to repeat it to me three more times before I understood what she was saying. This was a great reminder that I would have been so wrong if I had responded to this little girl with my initial reaction of anger and defensiveness. We saw this little girl a few weeks later, back at the pool, and she came right up to us and said, “hey I remember you! Want to play?” Y’all, Kendall isdifferent, and we have learned to celebrate those differences. But he is also a lot like you and me, too. Even more than you would think.
Back in the spring I did something I never thought I would do. I got my very first tattoo. The idea behind this tattoo came while I was on the Lucky Few retreat in Texas last year. The group sort of joked that we should all get matching tattoos to commemorate our unique bond. It quickly turned into a reality when we started making phone calls to tattoo parlors in Austin, trying to find someone to come out to the ranch to ink us all with matching tatts. I even texted Ed and asked him how he would feel if I came home from this trip with a tattoo, matching that of 20 plus other women, most of whom I had just met. I was pretty sure he would be convinced I had run off and joined a cult. That sweet man of mine though, he thought it was cool and decided he wanted one too.
One of the moms on the trip, Mica, mentioned that she had been having a recurring dream with the image of 3 arrows stacked on top of each other, but she wasn’t sure what it meant. We collectively agreed that there was symbolic meaning behind the 3 arrows and how it aligned with 3 copies of the 21stchromosome. Mica felt that the arrows symbolized how we fly the highest after we are stretched and pulled backwards, even more than we think we can bear. We rise, and we move forward. This resonated so deeply with all of us. Each one of us has been stretched to the limit during this journey with Down syndrome. We have faced sadness, adversity, guilt, fear, anger and frustration with the diagnosis. We feel it when we watch our child struggle to keep up with their peers and even when their ability to speak is questioned by 4-year-olds.
But we also fly high. We have experienced pure magic as we have watched our kids start to crawl when their typical peers are running. I have felt so proud to meet with expecting parents and tell them what a joy their unborn child will be. How their lives will be changed for the better. How their other children will become better human beings because of their relationship with their sibling. The framework of my life has not always been easy, but I am grateful for it. And when I look at my tattoo, I am quickly reminded how far I have come, how far Kendall has come and that there is even more out there, waiting for us.