I often think about where we are in this stage of Down syndrome and reflect on how it is so different from what I expected. I expected to be lost in all things Kendall and be overwhelmed by how much Down syndrome required of us. I was paranoid that Deuce would fall through the cracks because he needed so little, in comparison to his brothers. He wouldn’t feel as much of our love because I would be so engulfed in figuring out how to be a special needs parent while simultaneously advocating for Kendall, and TJ would be requiring so much of Ed because, come on, high school.
In reality though, our lives are pretty darn normal. Down syndrome has just become a part of our everyday routine and quite honestly, it takes a back seat to everything else we have going on. Yes, Kendall is in some type of therapy almost daily. Yes, he is at the doctor or hospital for routine visits almost weekly. Yes, we are encouraging him to master skills that a lot of his 3-year-old peers accomplished well over a year ago. But he is doing a lot more than most expect of him and he is doing it well. He is starting preschool at an elementary school in our school district in August. He is SO close to mastering his ABCs. He can almost count to 20 with intelligible annunciation and he can dress and undress himself with very little assistance.
Kendall turned 3 on June 4th. We had a wonderful “Pancakes & Pajamas” themed party for him at our house on a Sunday morning. We invited way more people than our house could comfortably fit, but it was so full of love for Kendall that I was brought to tears. Like literally, right in the middle of the party. Patty was showing me some of the raw photos she had captured from the back of her camera and it brought this wave of emotion over me. All these people were brought together because of Kendall. People from all different facets of our life. And Kendall loved every single second of it.
We hadn’t really talked to Kendall about his upcoming party because I was pretty sure that he wouldn’t understand what a party to celebrate his birth would mean. I mean, he was turning 3 and according to his recent cognitive testing for preschool, he has a 12% cognitive delay. However, I am constantly realizing that I cannot continue to short-change him with my own thoughts and beliefs about what he should able to do, based on my knowledge of Down syndrome. From the moment the guests started to arrive, I truly believe that he knew they were there for him. He greeted everyone (usually with “Happy Birthday”in response to being told the exact same thing), gave out hug after hug and flashed his notorious “cheese” face for the camera. He was in full on party mode and proved to be quite the host.
In preparation for preschool, we have been working on potty training with Kendall. He got a new potty for Christmas and he understands what it is used for. He says and signs “potty”when someone enters the restroom and has started to show signs for being able to understand when he needs to go. While we haven’t completely taken the plunge to get him completely potty trained, we are well on our way and hoping that school will prove to be the difference maker in getting him there, just as it did for Deuce.
On Fridays, Ed and I usually work from home together, while shuffling Kendall to and from therapies/appointments and Deuce is at day camp. Recently Ed made an appointment to have his car serviced while I was with Kendall at speech therapy. I had an online meeting 20 minutes after therapy ended so we rushed home so I could hop on the computer in time to join the call. If I am home alone, I take my meetings standing up in the kitchen so I can watch Kendall in the living room. I was actively engaged in this meeting, having to speak often, and every time I unmuted my mic Kendall would run in to the kitchen and loudly proclaim “hi” to my boss and the other attendees. Times like this I am so incredibly thankful for the family focused company that I work for.
After a few minutes I noticed that it was completely quiet, other than my meeting. Sometimes Kendall will sneak upstairs and hide in his tent but when I peeked around the corner I noticed he was standing in front of the bathroom door taking his clothes off. I knew that he needed to use the potty. Not wanting to miss out on the chance to have him use the toilet with obvious cues, I put my computer on mute and asked him if he needed to potty. He responded with a confident “yes!”so I grabbed his seat and put it over the toilet. I propped him up on the toilet, gave him some snacks and left the door open so he could see Curious Georgeplaying on the tv. Let’s be real, I was just hoping he would stay there for a few minutes so I could get some work done. I went back to my meeting and had to take it off mute to join in the conversation.
Then my phone rang and it was the UNC therapy office that we had just left. Normally I would have let it go to voicemail but because we had just left I thought there may be a specific reason they were calling me so soon. I thought maybe I left something important behind so I put my meeting back on mute and answered the phone. Lo and behold it was the financial counselor calling to collect my monthly payment towards Kendall’s monstrous bill. Of course, it was the bill guy. If you know me well, you know I rarely ever answer my phone for a call. And this is exactly why. As I’m pulling out my wallet to pay the bill I hear, “Mommy!! All done!”I run back around the corner with my phone on my ear and my wallet in my hand and there is Kendall. Standing in a huge puddle of pee and 3 large piles of poop. He’s completely naked with a baseball hat on backwards grinning like a Cheshire cat. I panicked but kept my composure. After all I was on the phone with this random guy and I didn’t want to scream “Holy $h!t”in his ear. Like, that’s literally what I was looking at. My meeting is still happening in the background and I’m praying that they don’t call my name to ask me a question. The bill guy is taking forever to pull up my account and I was super close to saying“Dude, I can’t do this right now. I’m in a meeting and have a kid covered in crap I’ve gotta clean up.”But I didn’t. I held Kendall’s hand to prevent him from running through the house, gave the guy my card number and hung up. Kendall needed an immediate bath so I carried him up the stairs by his hands and swung him in the tub. I ran his butt under the water and gave him the fastest bath ever, all the while praying my boss isn’t wondering what happened to me. I got him dressed and took him back downstairs so I could clean up the bathroom and then finish my meeting.
After it was all done and Kendall and I were resting on the couch, feeling fresh and clean, I couldn’t stop laughing at what that whole scene would have looked like to an outsider. And then I realized that it probably looked exactly like what anyone would expect of a working mom, multitasking at home alone with her toddler, trying to potty train. In that moment I was once again met with the reality that my expectations of Kendall should always remain high and no different than what they would be if he didn’t have Down syndrome. Kendall is doing exactly what he is supposed to be doing and he is right where he is supposed to be.