I wonder if she knows.
Oftentimes, I find myself wondering if Lillyana truly understands how different her life is. I could have never imagined how autism would shape our family—or how deeply in awe I would be of how gracefully my daughter has navigated these challenges.
Lillyana was five years old—she’s now nine—when her younger brother, Jackson, was diagnosed with autism shortly after his second birthday.
But the truth is, her life, just like ours, had begun changing long before that diagnosis. It started shortly after Jackson turned one. The first, most obvious sign was his severe sleep regression. At that age, waking in the middle of the night might seem normal, and at first, I didn’t think much of it. But Jackson’s sleep issues were extreme—sometimes just three hours of sleep at night, maybe an hour nap during the day. I kept telling myself it was just a phase.
One of the things I feel most vulnerable sharing is how profoundly these early years affected Lillyana. My little angel—the light of our lives—has always been special to me. I remember when she was almost two, waking up in the night. On her own, she would turn on the TV, grab a bottle from the mini-fridge upstairs, sit in her chair, and just relax. She didn’t need anyone to help her.
She loved going to the beach, and we went as often as we could. She and her father would spend hours hand-making cosplay costumes for local comic cons. We stitched her Halloween costumes together. Family vacations, shopping trips—these were the things that once filled our lives with joy. We had time for these things… until slowly, one by one, they began to stop.
At first, she would come out of her room asking to play or go somewhere, and I had to tell her no. The sadness on her face was heartbreaking and made me feel like I was failing her. The night before, Jackson would have destroyed parts of the house. Food thrown, drawers emptied, messes left behind, and I was left to clean it up while also trying to rest before going to work. I want her to know that every “no” came from hope that tomorrow would be better—that maybe life would settle down.
I wonder if she knows the guilt I carried. How much I wanted to say yes, but couldn’t. How badly it hurt when Jackson would wake her in the middle of the night—rummaging through her things, pulling trinkets off her dresser, tossing clothes everywhere. She would sometimes come to my room in tears: “Can you get Jackson out of my room?” I can still see her little face, the tears streaming down her cheeks. Those moments are etched in my memory forever.
I wonder if she knows how extraordinary she has been through all of this.
Lillyana is the most sensitive soul I have ever met. She feels everything so deeply, including my struggles with exhaustion, anxiety, and isolation. One day, she came out of her room and handed me a post-it note. In purple marker, she had written:
“Mom, I know it is hard to take care of Jackson a lot. I love you two more than you think.”
I wonder if she knows how much that small note meant to me. I wonder if she knows the guilt I felt knowing she sometimes chose to stay quiet, letting me rest instead of asking for breakfast or wanting to go somewhere. She carried so much responsibility on those tiny shoulders.
Yet, despite it all, she has never lashed out. She does these things gladly, with pride. She has accepted a life that changed overnight, a life different from her friends. She asks for so little—just family time, moments together with Mom, Dad, and her little brother. That’s all she wants: a sense of normalcy in a world that doesn’t often feel normal for her.
I wonder if she knows how much Jackson loves her. How his face lights up when she runs and jumps with him. How he cries at the fence when she’s playing elsewhere because he wants her to come home. Lillyana was excited for a sibling and a lifelong friend. I wonder if she feels sadness about the limitations their lives have imposed, even as she loves him fiercely.
I wonder if she knows how proud I am when I see her get excited about Jackson’s development. How her heart has become so open to differences in others. She seeks out kids who seem lonely, plays with younger cousins, friends, even other children on the spectrum. People always comment on her inclusiveness.
I wonder if she knows how much I try to make her the center of attention when I can. How much I want her to feel loved, celebrated, and supported. How much I want her to have every opportunity possible. This topic leaves me vulnerable, but I hope she understands the depth of my love.
Most of all, I wonder if she knows how incredibly special she truly is. How much we cherish every ounce of the remarkable person she is becoming.
I really wonder if she knows.
