Sit with me while I overcome that IEP. It might take a minute. While I rock back and forth and ask the same old worrisome questions: “Is it enough? Are we enough?” Enough therapy. Enough support. Enough advocacy. Enough pushback. Enough movement in the right direction. Enough seeing her potential. Enough.
“Is it that different,” I wonder, “This same old sickness that’s plagued me my whole life?” Except now the targets have moved. The subjects have changed. It’s not me we’re talking about, with my academics and worthiness and social rankings… it’s her. And haven’t we learned this lesson already? To throw out the damn measuring sticks they (society) keep thrusting in our faces and just keep offering the only thing we wanted and needed all along? Love?
Here’s some more, dear heart. Try to remember. Let it be enough.
Stories
As a senior in high school, when asked why English matters, I wrote “Everyone has a story and something valuable to share with the world.” This intense belief became a guiding light in my life as I chose my career: English teaching. I recognized the power of writing and expression to unleash personal stories, and I wanted to help empower others to share what they had with the world. Communication has always been very important to me. Fast forward many years, and then there was Lydia. She has managed to rearrange & expand my perspective on all my core beliefs, including this one. Truthfully, my heart has ached over how hard spoken language is for her. But there has NEVER been a moment in her life when we have not communicated. She and I share a unique bond that transcends words & I believe time. Some of my most sacred moments as a mother involve “talking” WITH Lydia through difficult, even heartbreaking struggles. The bond is so real that even when she was a 5 month old in the hospital after her surgery, doctors commented on it. WE just ARE. 💛 And thus I learned that “communication” can mean many things, and is a layered concept. I long for words. I long for HER words. And I believe they will come in her own time. An update: Lydie is “nonverbal” in that she understands many words but volunteers few. She will ask to “eat” or for “water” or “toy” or a few other single-word requests if highly motivated, but that’s it. Sometimes she says “bye!” or echoes “love you!” 🥹 She knows many signs, and many SONGS. Music is our biggest key—she memorizes well and will sing to herself often. Lots of times it’s unintelligible, but we first started catching melodies, and now phrases. We play Taylor Swift & Miss Rachel constantly for these reasons. She knows her ABCs & their sounds, but the majority of her sweet classmates are also nonverbal & we are trying to get her in an environment that will better help her speech development. It’s a tricky world and we are always learning. We love her so much. She has taught me to LISTEN with my eyes, my body, my ears, and my whole heart. Someday those words will come. Her story, however it’s written, is worthy.
Kindergarten?!
Last night as I was going to bed & imagining what this day would be like, I thought about dropping this girl off at the kindergarten doors and thought ‘There goes my whole world.’ But I realized in an instant that for Lydia, that phrase doesn’t go far enough. When this kid showed up on the scene 5 years ago, she not only became a part of, but obliterated and remade my whole world. In one fell swoop and a million micro & macro lessons thereafter, she changed my life course and my worldview.
.
There goes my moral earthquake.
There goes my paradigm shift.
There goes my life redefined.
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So was it a big deal when my whole universe walked into kindergarten today, complete and utter darling miracle that she is? Yes, it was. And you darn well better believe it when I say, “Look out, this one’s a world-changer!” Because trust me—I know.
You Always Matter
I ugly-cried when Lydia’s teacher sent me this picture and told me it’s been an honor to have her in class the last two years.
I’ve never sent any of my babies to preschool before this one—I just did it at home myself because that’s what our crazy lives required. But now our lives are a different kind of crazy with new requirements & this mom needs all the help she can get. Heaven knows our attendance record was a lot more miss than hit as the medical issues seemed to pile up this winter, but Lyd’s team never stopped checking in on us. When Lydia missed her class program today (due to being up all night 😴), I shrugged it off as “just one more missed thing” and didn’t think it hit me that hard—I didn’t let it hit me that hard. But then that email came through celebrating my girl and her growth and her milestones and her existence, anyway, and I lost it. I lost it and sit here humbled with ugly tears streaming down my cheeks thanking this teacher for maybe the biggest lesson of all. It’s one I’ve learned before, but let’s take a beat and REMEMBER. You matter, Lydie girl. In sickness and in health. In your presence and your absence. On the days you willingly give all the right answers, and on the days you don’t. When you’re loud and when you’re quiet. When you’re happy and when you’re sad. You matter forever and always just for being you. And so we notice and give you the space you deserve. Baby girl, I am proud of you. And to her teacher especially, thank you 💛