With Christmas and the New Year approaching I think many of us start to take stock of our lives–what we’ve accomplished, where we’ve fallen short and hope to improve, what we have to be grateful for…
For me these holidays are also inextricably linked to Esmé’s birthday, which comes relatively soon after the holidays. So the stock I start taking this time of year has a lot to do with her development, with how far she has come…and how far off from her peer group she is. With Ez we also have a number of memories of unpleasant holiday experiences that stem from Esmé getting over stimulated and having seizures around the “fun” holiday festivities.
Esmé will be four in January. This has been a year of unparalleled growth (figurative, not literal), health, and development for her. She has come so far in so many respects. Language development, asserting her will, independence, eating by mouth, traveling, and learning from peers. I am so grateful for these developments. So so so very grateful.
At the same time, the strides that she has made–however huge they may be to us, to her–leave her still so far behind her peers. Despite her tremendous gains the gap between Esmé and her typical peers is widening not, as I had hoped for longer than I’d like to admit, closing.
And for some reason–I don’t know if it is regular exposure to her same-age peers, or if it is fatigue, or if it is the two clusters of seizures this week, or her continued lack of growth–I am finding this reality particularly hard to process at the moment.
Christmas time at four-years-old seems like such a magical time–the Santa excitement, the ability to begin to participate in crafts and baking, the budding understanding of giving and receiving, the sweets, the ability to ask for the things you want. When I was pregnant the Christmases I imagined for my expected child involved all of these things…in previous years I could tell myself that no matter what Ez wouldn’t have been able to participate in crafting at 11 months, or baking at 23 months, or understand giving at 35 months. But this year I know better.
I imagine what it would be like to have her tell me “Maman, I want to tell Santa I want that.” Or to watch her standing on a step-stool next to my mother in the kitchen where I baked cookies with my own grandmother. Or to see her wide eyes as I she pulled an obscene amount of candy from her stocking. Or to watch her get so high on sugar and presents and excitement that she passes out midday in a pile of toys and wrapping paper.
I just want her to feel the magic and joy that other kids do. And I am at such a loss for how to offer it to her.