I am often wondering if Lillyana really knows.
I wonder if she realizes how different her life is. I would never have imagined how autism would shape our family or how completely in awe I would be of the grace and patience she shows every single day.
Lillyana was five when her little brother, Jackson, was diagnosed with autism shortly after he turned two. But really, her life started to change long before that. Not long after Jackson turned one, things began to shift, at first slowly and quietly, then all at once.
But the greatest challenge was his sleep or rather, the complete lack of it. At first, I brushed it off, thinking it was normal for a one-year-old to wake at night. But Jackson’s sleep issues were extreme. Three hours a night, maybe an hour nap during the day. I thought it was a phase. I couldn’t have been more wrong.
It’s hard for me to talk about, but one of the things that affected me the most during those years was how it was affecting Lillyana. My little angel, my bright, shining girl-she handled everything in ways that left me speechless.
She even had this quiet independence as a toddler. I remember her being almost two, waking up at night and, on her own, turning on the TV, grabbing a bottle from the mini-fridge upstairs, and settling in her chair like nothing was unusual. No parents required.
She loved the beach, trips to comic cons with her dad, family vacations, and even the painstaking hours we spent sewing Halloween costumes by hand. Those are moments which we took for granted, assuming we would always have them.
And then, slowly but surely, everything changed.
I remember the heartbreak of telling her “no” when she would ask to play or go somewhere, as her big eyes would fill with disappointment, and I would feel as though I’d failed her. Her brother had been awake all night and was leaving a trail of chaos in his wake. I was exhausted, cleaning up while he continued to throw food and dig through trash, barely listening to me. I told her no, not because I wanted to, but because I hoped tomorrow would be better. I hoped life would settle down.
I wonder whether she knew how much I wanted to escape sometimes, even for a moment. I wonder if she knew the guilt that came with saying no and the guilt at seeing sadness in her eyes.
He would get into her room at night, swipe her things, scatter her clothes. I’d hear her cries, her small voice saying, “Mom, can you get Jackson out of my room?” Those tears, those moments—they are etched into my mind.
And yet…through it all, Lillyana has been incredible. She’s the most sensitive soul I’ve ever met, feeling everything so deeply my exhaustion, my anxiety, my isolation. One day, she handed me a post-it note:
“Mom, I know it’s tough to take care of Jackson a lot. I love you two more than you think.”
It meant the world to me, but it also broke my heart because she carried so much of that pressure herself choosing not to wake me, skipping her own needs, thinking she was helping.
Even now, she wakes with him in the morning, quietly getting him a drink, turning on his show. She’s proud to help. She’s never complained. She has accepted this life, the changes we never expected, and she thrives in it.
She notices differences and embraces them, makes every child she meets, whether it’s a playground friend, a cousin or another kid on the spectrum, feel included. She has developed empathy well beyond her years. Sometimes, I wish she knew how different her childhood is from everyone else’s. I wonder if she knows how much effort I put into making sure she still has time to be herself and feel she’s the center of our world too. I wonder if she knows just how special she is, how loved deeply, and how proud I am of the person she is becoming. I really wonder if she knows.
