L’Chaim

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Yesterday was Aleck’s last day of first grade and I noticed a lot of parents doing the side by side photos of their children taken on the first and last days of school. You get to see how much they’ve grown, how their hair looks, their confident attitudes, and some parents go so far as to dress their kids in the same clothing so you can really see the difference. Yesterday it was raining so we could not take the photo out back by our fence where we propped Aleck up so carefully for his first day of school photo. And yesterday we decided to let Aleck write his own sign since he’s been doing so well in handwriting all year. But every time he got to the word “grade” it was totally illegible. On the third try, we declared it “just fine” but frustrations had been vocalized and feelings were hurt.

So our last day of school photo doesn’t begin to convey anything about the end of first grade. In fact, actually ending first grade is not the accomplishment we wish to celebrate. It pales by comparison when we think back to June 20, 2018. From an outside perspective, we were a family of three enjoying an absolutely beautiful day at Brookfield Zoo, one of Aleck’s favorite places. Thanks to one of many generous donations from Chai Lifeline Midwest we were able to make it into a full day of fun, enjoying every perk the zoo had to offer, without having to worry about our piggy bank. We saw the dolphin show for the first time and got soaking wet. After stuffing furry goat faces with food we discovered the parakeet house and were mesmerized by the beautiful birds. We rode the train back and forth through the zoo when our feet needed a break. All of Aleck’s favorite hot spots were hit including downing buffalo burgers while being watched by the bison sweating in the hot sun, delicious. Lastly, we headed to the butterfly sanctuary, explaining to Aleck that this would be the last thing we did before we left. We had to get home, we needed to grab dinner, and we tried to bribe him with one of his favorite places, Calo’s in Andersonville, as an incentive.

But when it was actually time to go Aleck did something he’s never done in a public place since he was an infant, he had a full-blown meltdown, a total temper tantrum. There were tears, there was stomping, there was running away, and shrieking, in a very small and enclosed area of what is otherwise a huge zoo. If you were anywhere near that sanctuary you heard us and your heart probably broke for Aleck who looked so genuinely upset. I finally had to take a deep breath and pick him up, knowing that he’d only become more resistant. He was leaving, on his own terms or not, and right side up or upside down, whichever way we could carry him at that moment. We got looks of pity from everyone who saw us walking out. And at that moment, I felt every single stare and let each one pierce right through me because I felt like I deserved it. Tomorrow morning we would be waking up at 4:30 am to get to Lurie for Aleck’s surgery, and even though we tried to make it into the most beautiful day we possibly could, we couldn’t shake the feeling of dread for what was waiting for us.

So finishing first grade seemed like the most anti-climactic celebration. They were having their Fun Fair at school which meant mild entertainment separated by large moments of chaos. Lots of parents were at the school volunteering, especially in Aleck’s class, and we all looked at each other and congratulated each other on surviving the year. I could hear the sarcastic drawl of my voice growing stronger with each greeting. I no longer cared to hash out any of the issues we had as a class during the year. It’s over and it wasn’t important. We grabbed Aleck’s stuff, his report card which I haven’t even looked at yet, and his walker, and threw it in the car. We are exhausted.

Tonight we will celebrate something else entirely. Tonight we will celebrate one year since Aleck’s painful orthopedic surgery. We will go to Sun Wah BBQ, we will eat duck with friends, and look at each other in disbelief that we made it through relatively unscathed, though Aleck will have cool scars for a very long time. However, we are still worried about the way he walks, his little hop step he does to gain speed. He fell at school the other day, the first time in a very long time, and has bruises on his arm. On Monday we visited with one of our surgeons and he’s thrilled with the progress, the ball of his hip is still perfectly in place. But now we need to sign up for another gait study to see how his walk is coming. We also need to get into therapy at Shriner’s to get another set of eyes on the way he walks. He’s come so far this year that I feel the overwhelming need to protect his progress. When as a parent you willingly put your family and your child through what can only be described as a living hell, you want to be sure you get every positive outcome imaginable. You don’t want to do this again. You don’t even want to think about this again. What you want more than anything is a solid moment to pat yourself on the back, to clink your glasses in “L’Chaim”, and know that you gave it your all, then go take a very long nap.