I got to visit Lily for a brief time in celebration of the Jewish holiday Pesach (also known as Passover). We both love the holiday, although for different reasons. Me, I like the food – as someone who enjoys cooking, I actually relish the challenge of not eating leavened foods for a week. I love the spring flavors, with the fresh veggies on the table and usually my first strawberries of the year as part of the dessert. Lily loves that we have books at the table, since we use a written text to guide the traditional retelling of the story of how the Jews left Egypt. She “reads” whenever anyone has a part to read aloud, inventing her own stories. (Being totally blind, of course, she can’t read a typical printed book.) She also loves cuing the rest of us for the passages read aloud as a group.
Lily and I both were struggling a bit this year, though. Turns out that flying for too much of a day is not something my body likes, and dealing with luggage aggravated the finger joint pains I get from my fibro. Lily was recovering from “hospital dentistry,” where she was put under general anesthesia so she could get fillings and X-rays and some other, more intensive care than she can get from her normal dentist. We’re not sure, still, what’s going on with her re-manifested menstrual cycle.
So we sisters had time to be together and be okay but not okay together. Lily was so full of words – stories just tumbled out of her – although I could see that she was searching to express things she is confronting for the first time. I don’t think she knows how to find the words for fear, frustration, confusion. She hasn’t figured out how to tell us when she’s having seizures that don’t look the way we expect, or when sensory inputs get all mixed up for her. My mom and I started talking about how to help her with building a vocabulary about feelings and sensations…which is, let me assure you, an odd thing to talk about.
With all of that in my mind, I had a sober, bittersweet thought: there is a part of me that wants desperately to protect her, to advocate for her, to keep her from hurting, and yet another part of me knows that it is through my own struggles and pain that I’ve learned and grown. Funny, isn’t it, that we want so much to shield our loved ones from even those instructive experiences that are unpleasant. Growing up isn’t always fun.