I wonder if she knows.
Oftentimes I wonder if Lillyana knows how different her life is. I would have never imagined how autism would affect my daughter or how in awe I am of how well she handled it.
My daughter was five years old (now nine) when her brother Jackson (now four) was diagnosed with autism shortly after he turned two. However, her life, just like her father’s and mine, had changed way before that. Shortly after Jackson turned one, our lives started to change. The main reason was due to her brother’s severe sleep regression issues. He was only one, so waking up in the middle of the night seemed to be a normal thing we would go through. I didn’t think much of it in the beginning. However, Jackson’s sleep issues were severe. Sleeping only three hours a night and maybe an hour nap during the day, I remember thinking it was a phase.
One of the things on our journey that I feel the most vulnerable talking about is how this time and the years after affected my daughter Lillyana. My little angel, the light of our lives and everyone else’s who know her. Lillyana has always, in my eyes, been a special child. I remember her being one year old, almost two, and waking up in the middle of the night. She on her own, would turn on the TV, grab a bottle out of the mini-fridge upstairs, sit in her chair, and relax. No parents needed.
She loved going to the beach. We went every chance we could. She and her father would spend hours hand-making cosplay costumes to go to comic-cons in our local area. We would even hand stitch her Halloween costumes. We went on family vacations and shopping trips.
We always had the time and option to do these things. Slowly but surely, it all started to stop.
In the beginning, I remember her coming out of her room asking to play or go somewhere and how we couldn’t. Her brother had been up all night the night prior, completely destroying my house. I had to clean up the mess from that night while he was still throwing food all over my house and digging in the trash can. He was not listening to my commands to stop. He wouldn’t even acknowledge me, but I still had to clean the mess.
I also had to try to rest before I went to work later in the day. I wonder if she knows I only said no because I thought tomorrow would be better. I wonder if she knows I wanted to go too. I wonder if she knows the guilt I felt telling her no.
I wonder if she knows how bad I felt when her brother would wake her up in the middle of the night by going into her room. Especially when she would have school the next day. He would immediately swipe all her trinkets off the dresser, pull her drawers out and throw clothes all over the room. I wonder if she knows how I felt when I would wake up to her crying in the middle of the night coming into my room, “Can you get Jackson out of my room?”
I wonder if she knows how amazing she is for the way she has handled our lives changing.
Lillyana is the most sensitive soul I have ever met. She can intensely feel everything around her. Including my struggles with sleep deprivation, anxiety, and isolation. One day she came out of her room and she handed me a Post-it note. 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 Post-it meant to me. I also wonder if she knows the guilt I feel. The pressure she felt to not ask to go anywhere or to let me sleep when she got up and wanted breakfast. I had been up all night guarding her door from her brother. I wonder if she knows how genuinely bad I felt. I wonder if she knows how hard I tried but couldn’t catch up.
I wonder if she knows how it warms my heart and makes me feel like a terrible parent at the same time when I hear her get up with her brother in the morning. She will shut my door, then go turn on his show and get him a drink. As much as I love that compassion in her, I never wanted to put that pressure on her. I always gave her a few minutes, then shortly after, I would get up to relieve her.
She has never lashed out. She is happy to do these things.
She is proud of herself for helping. She has never complained about the change. She is so smart—she has to know how different her life is from her friends. All she asks when she gets the option is to do something as a family. Mom, Dad, Little Brother. That is all she wants.
I wonder if she knows how much her brother loves her. How much he loves it when she runs and jumps with him. How today when she was across the street playing with the neighbor kids he cried because he wanted her to come home. How he looks forward to seeing her after she spends the weekend with friends or family. I wonder if she knows how much it warms my heart to see her get so excited about her brother’s development.
I wonder if she knows how this life has made her so open to differences in others. Lillyana is the type of child who plays with the kid at the playground who seems lonely. Younger cousins and friends who might have siblings with younger brothers or sisters, even other kids on the spectrum—their parents always compliment her on her inclusiveness.
I truly do wonder if she knows how different her life is from almost everyone around us.
I wonder how it will affect her later on in life. I wonder if she knows now how hard I work to make her the center of attention at times. I wonder if she knows what I do to make sure she has an outlet.
I wonder if she knows how important she is and how vulnerable this topic makes me.
Most importantly I wonder if she knows, in every way possible, how special she truly is.
How much we appreciate every ounce of the person she is becoming.
I really wonder if she knows.
Originally published on the author’s Facebook page