The last few days have felt like an incredible roller coaster, but the good kind for once: the dips have lead right into these amazing highs that have sent shivers up our spines with hopefulness and finally culminated in today.
It was Lily’s first day of Junior Kindergarten. It wasn’t perfect, not by a long shot. We had to wake her up and she was cranky; she vomited up her entire breakfast (luckily before she was dressed) and then, during our unexpected morning bath, she pooped in the tub; she screamed through having her hair bruised and refused to look at the camera while I tried, desperately, to get that iconic “first day of school” photo, with my perfectly printed sign and her adorable first day of school outfit. Her teacher and EA seem wonderful and took the time to listen to the few things we were able to tell them this morning and are excited to get working on walking and eating. The other kids in her class are adorable and are just a little more advanced than she is at this point, which is exactly what we were hoping for – that she would end up in a classroom where the other kids might help to motivate her. However, right now Lily doesn’t really love other kids and while they told us that she did okay, reading between the lines we were able to tell that she was feeling out of her element for most of the day and had no issues voicing that.
But do you know what? This is all okay. This is nothing we weren’t expecting with Lily and frankly is nothing that all parents go through: somedays don’t work out the way that they do in your imagination, sometimes your kid vomits at the worst possible time, sometimes they’re not the amazing kid that you know them to be. This is the life of being a parent that were relishing. A little less worry about therapies and feeding schedules and heart conditions, and more focus on making the transition into school the best one for her. So while this day certainly didn’t match the vision I always had of the first day of school, I’m still flying fairly high on the fact that this is where our life is and how nice it is to be experiencing something at the same time as all of the other kindergarten parents. I never, ever thought that putting together a back-pack for school would include diapers and a foley catheter instead of crayons and lunch, but in the end it’s the backpack that matters, not the contents.
One of the things we were happy to bring along today was Lily’s new walker! While she had been fit for it earlier in the year, there was some back-and-forth between us and my insurance company about whether they were going to cover the cost that comes out of our pocket (we’re lucky in Ontario that the Assistive Devices Program does cover 75% of the cost of the walker) and we couldn’t complete the order until that got worked out. It finally did at the end of July and her pretty blue mustang walker arrived just in time for school. When we first tried it out months ago, Lily needed a lot of support to take even the most tentative steps – a lot of crouching behind her and prompting her legs to go through the motions. We’ve spent a lot of time with her therapists from Bloorview working on getting her legs ready and the difference it made was incredible. While she was cautious when we first got her in place, it only took a couple of minutes for her to put the pieces together and she took some incredible confident steps….and then she did it again and again and again. She may not be running a marathon anytime soon, but I can actually see a time in the not very distant future where she’ll be walking to school instead of being strolled there and there are actually zero words to describe how incredible that hope feels. She’s standing on this huge verge, this incredible milestone, and there is no greater feeling than watching her work out how to make it happen.
The truth is, I’m prouder of this little girl than I have ever been of my own self, and I really do think that she is going to do amazing things; it may not be some big elaborate gift that she brings to the world – she may not cure cancer or write the most incredible book of sonnets, but I don’t think a girl who works so hard and is so determined can get through life without touching people. In fact, I think it may have already started. Last week I had an incredibly interesting encounter through Twitter with an individual that I had never met, in person or online. My brother-in-law had been at a TFC game and was taken aback when he heard two of the employees at BMO Field calling each other “retards”. He tweeted both TFC and BMO Field to bring their attention to it and I re-tweeted and echoed my own sentiment that I hoped this was something they would address with their employees. This random person sent me a tweet back with a horrible response and I was completely shocked. I thought about ignoring him and blocking him so that I didn’t have to deal with his stupidity, but then I remembered this experience and knew that, in order to be the mother that I want to be, I had to address it and not just passively accept the behaviour. I attached a photo of Lily, standing proudly in her new walker, and sent him a tweet thanking him for sending such a useless response. To be perfectly honest, I expected the encounter to end there because honestly, who would respond to this? Well it turns out, this person would. Not only did he acknowledge that his original tweet was pathetic, apologize profusely and promise me that he would never use the r-word again, he then made a donation to the National Down Syndrome Association to show that he truly meant everything that he said. It was beyond anything that I had ever expected and made me so happy that Lily was able to help create this small change in the world. I can only hope that this change spurs another – that he really will never use this type of word again and maybe take a minute to share this experience with someone else and keep the change going forward.
