Getti
ng ready to go to my parent’s house for Rosh Hashanah dinner to ring in the new year felt like some possessed mad dash around our household. I did a commissioned family portrait that morning, then chose my recipes to bring over, and as I was about to start grocery shopping I was hit hard by an overwhelming feeling of exhaustion and anxiety. So instead of doing what I needed to do I raced home, picked up Craig and Aleck, and we all went for brunch. Then I begged Craig to drop me off at home because I felt like I couldn’t hold my head up any longer and needed a nap, and he took Aleck grocery shopping with him which I’m sure wasn’t easy. I woke up and started chopping vegetables while Craig gave Aleck a bath, decided that we had to cook the potatoes at my parent’s house otherwise we were going to be late, and then I got dressed which felt like the biggest chore of them all. Most of my clothes are tight since months spent eating takeout and hospital food will do that to you, my hair wasn’t cut since I waited to the very last possible moment and my stylist had to cancel due to a family emergency. And as I walked into the garage in Highland Park I braced myself but I wasn’t even sure for what. But as we finished the kiddish and said the Shehechiyanu Blessing, I felt the tears once again streaming down my face. We say this prayer at the beginning of every Jewish holiday and its literal translation is, “Blessed are You, Lord our God, Ruler of the Universe who has given us life, sustained us, and allowed us to reach this day.” Standing in shul with my dad, after Craig, Aleck, and my mom had gone home to prepare lunch, I finally understood the energy that had been following me the last 24 hours. We listened to the shofar and I looked at my dad and said, “I can’t believe we made it, we made it here, to this moment.” At first, he was confused; was it hard to get out the door this morning, was there bad traffic? But then he turned to me and said, “On June 20th today seemed like an impossibility,” and now we both had tears in our eyes.
Aleck has been back in school for almost a week, though he won’t have a full week of school for weeks. Last week was Labor Day, this week was Rosh Hashanah, the Jewish New Year, and next week is Yom Kippur, the Jewish day of atonement. Between school and the Jewish holidays, September has always felt more like the start of the new year than January ever did. School starts, people come back from vacation and get serious about work again, it’s like our circadian rhythm doesn’t really begin until the start of the fall season. And never before have I welcomed a schedule with such open arms, I don’t even mind that the accessible school bus has to pick Aleck up at 7:10 am every morning even though school doesn’t start until 7:45 am, we live 6 minutes away, and he’s the only kid on the bus. I didn’t even mind that it took a few days for CPS to work out the kinks with this one and was instead thankful that I had Craig here to oversee all of this while I continued to work and build my business. In the end, the bus can get him closer to the school than we can and since we are a one car family I can be out on location and be confident that Aleck’s ride to and from school is under control. Much to our dismay he has a new aide this year, his aide from last year was promoted to a bigger position at the school, and thankfully is still around to cover Aleck when his new aide takes lunch. It was one more variable we really didn’t need, but the new aide came and visited us at our home to get an idea of what Aleck’s mobility looked like, and seems like a super sweet guy. He shares Aleck’s love for all things Apple and all things Mario, I think they are going to get along just fine.
During the first week of school we noticed something that we weren’t expecting, Aleck is quite comfortable in his chair, maybe a bit too comfortable. At home and at gatherings he’s been showing off his skills, working on taking a few steps at a time without any help, but it seems he’s spending all of his time on his tushie during the day. Then, when we went to encourage him to walk at home it turned into a fight or rather a lengthy negotiation. So we’ve woven walking into his everyday routine, that way he knows it’s coming, he’s ready for it, and even if he’s sitting at school, he’s walking around our apartment. And with walking comes socks and his AFO, which means we are going through a lot of socks. Unfortunately, even though the Nike Dri-Fit socks say they wick moisture away pools of sweat were building up in Aleck’s right foot and he’s got a mild case of athlete’s foot. Every time I take off his sock he uses his left foot to itch his right while mumbling, “itchy, itchy, itchy.” But that’s not the worst of it. In Craig’s rush to get Aleck a bath and off to Shirley Ryan he cut the toenail too low on his left foot, the good foot, and we’ve been battling an infected toenail for weeks now. Shirley Ryan sent us a podiatrist who came at the very end of the day and clearly wasn’t capable of working with children. When he flinched and shouted as she put the numbing shot in his toe she looked at me asking me to make him behave and stop squirming so she could take care of him. I told her the only thing I could do was hold him down, but she wasn’t comfortable with that. Holy cow, what a mess, who thought she was a good choice to make the rounds on the pediatric floor? Now Aleck is terrified of seeing a podiatrist. We took him to his pediatrician who recommended someone, and at that point, we thought it was healing, but we can see that it isn’t so let’s add that to the list. We’ve switched from the Nike socks to these special Smartknit socks made for wearing with braces like AFO’s but at $50 for a pack of three, well, it’s getting to be quite the investment.
Thankfully with Aleck at school, we finally have time to get things done on our to-do lists. The recalled airbags in our car were finally replaced, I finished unpacking my office and found the top of my desk, along with my favorite metal magnetic boards. It’s time to settle up all of the household items we’ve put off and it’s time to get ready for fall, dig out our coats, and make room in our coat closet. I still can’t believe how much we’ve done in the last 6 months, how much we’ve gone through in the last 8 months, and how little we have on the horizon. I almost don’t know if I remember how to behave when I’m not in crisis mode, and I have no idea how we moved and unpacked as quickly as we did. Craig lost his job offer, then we lost his mother, we fought with our landlords and moved all while carrying on multiple surgery consults and planning for Aleck’s upcoming procedures. We managed to keep our heads above water and our own sanity (barely) in Lurie, at home, and then at Shirley Ryan. Without any surgeries or upcoming moves hanging over our heads, it’s time to give ourselves permission to breathe, to take naps, to hit some golf balls, to go see a movie during the day, because it has to be a good new year.
From our family to all of yours, Shana Tova!
