For most of Ella’s life, we have been told all the things she can’t, or won’t do. Every assessment seems to come with low scores, and when filling out the medical, and activities of daily life paperwork, we are told to answer as if Ella is having her very worst day. Those are the heavy days. The days that make you want to crawl into bed and cry because of the incomplete picture that is being painted.

The IEP meetings are a bit lighter, where Ella’s teacher and therapists highlight all the amazing things she is doing, never failing to mention her wonderful personality. They also gently note that she has not met every goal and that absences are impacting her performance. Suddenly, a sixty percent success rate feels normal, and even something to celebrate (which I wholeheartedly support). Our girl is working hard, and as long as she’s making progress, my mama heart is full.

The heavy days are expected, though they are the ones we talk about the least in our house. Because for every one thing Ella can’t do or experience, there are so many others that fill the space. Ella is non-ambulatory, but she always finds a way to get where she wants to go, or reach what she wants to have. Ella is non-verbal, yet she communicates better than most of us with a yawn, an eye roll, or her big toothy smile. Tell a funny joke and she laughs. If she doesn’t like what’s on TV, she breathes heavy. If she needs the potty (she is self-toileting), she wiggles her butt. If she wants attention, she will yell or raise her hand. And if dinner is not her favorite, she simply won’t open her mouth. Meanwhile, my thirteen-year-old , who uses alllllllll his words , still manages to confuse the heck out of me.

Ella is pure joy and we want nothing more than her to experience as much as she can with the limitations that she has. We participate in adaptive cheerleading and swim, and enjoy people watching every chance we get. Her beauty and smiles draw people in, and no matter where we go, we always make friends. I will happily talk about her all day long to anyone. Tell her she is gorgeous, and you have made a best friend for life.

This past week, Ella’s teacher sent me a picture of her with her classmate Anthony. We have received plenty of photos from class before, but this one hit different. If Ella likes you, she always finds a way to make it known, and this photo told the sweetest story.

My girl has her first crush. She’s eleven, so it’s perfectly age-appropriate, and her feelings for Anthony were pretty clear. As a special needs mom, you know, and accept, there are certain neurotypical milestones you may miss. Ella made sure she didn’t miss this one, and I’m so grateful this tender moment was captured. 

When the heaviness feels like it’s closing in and hard to breathe through, I find myself going back to these sweet photos. They remind me that even in the middle of the hard, there is still so much to be thankful for.

Ella is teaching us to parent in a way I never expected. One that is slower, more intentional, and so incredibly beautiful. The milestones may look different, the moments may come in their own time, but when they do, they feel even more meaningful. Loving her and learning from her has been so incredibly rewarding. 💜