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.

RELATED: Before I Knew Autism

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.”

Sticky note with child's handwriting, color photo

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 smartshe 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.

RELATED: Siblings of a Child With Autism Love Big

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

So God Made a Mother book by Leslie Means

If you liked this, you'll love our book, SO GOD MADE A MOTHER available now!

Order Now

Check out our new Keepsake Companion Journal that pairs with our So God Made a Mother book!

Order Now
So God Made a Mother's Story Keepsake Journal

Melissa Gill

My name is Melissa Gill.  I am a 31-year-old, married mother of two beautiful children. I have always had a passion for writing and sharing stories about my life and lessons learned along the way. Located in the South Eastern side of Virginia right along the coast, my family has lived here our whole lives. 

Formerly in the corporate restaurant industry as an area manager managing multiple restaurant locations in South Eastern Virginia, I took a step back from my career and the industry as a whole, to spend more time working with and advocating for my son Jackson who was diagnosed with level 3 severe autism. After Jackson's diagnosis and initial therapy sessions, it became clear that I needed to devote as much of my time to Jackson's care and development as I could. 
I needed to be a full-time caregiver. Shortly after becoming a full-time caregiver, advocating for caregivers, and individuals who are affected by autism spectrum disorder quickly became my passion. 
We actively share our story on Facebook at facebook.com/myjourneywithjackson.

As the Sibling of a Child With Special Needs, She Learns From Him Too

In: Kids, Motherhood
Little girl leaning on big brother, color photo

She sat beside me in the car, diligently working on sorting letters from the Elmo case she so often carries in her clutches, occupying much of her days. We waited for her brother who, inside the adjacent building, sat working on his own set of goals, alongside his SLP and OT. “A for Apple! B is for Baby!” Eva proudly exclaimed, gazing up at me, her smile filled with wonder and excitement. A girl after my own heart—her love of books, words, and the letters that encompass them all emanates through her in the most joyous way. I watched my...

Keep Reading

Check in on Your Friends Raising Kids With Special Needs—We’re Exhausted

In: Motherhood
Tired woman silhouette

Dear mama with normal children, Normal? Typical? What’s politically correct you might wonder? As do I, and what is normal anyway? Honestly, I’m not sure because I’m tired. And I don’t spend my free time on political jargon. And I definitely don’t sleep well. And most of my waking hours I’m caring for someone else. Or finding resources that will hopefully make our life a little bit easier someday. Someday–a day that feels more and more like a unicorn lately. You see, I’m a special needs mama to a 15-year-old son. And no, it’s not politically correct to call myself...

Keep Reading

Autism May Never Get Easier, But We Keep Getting Stronger

In: Child, Motherhood
Mom kissing son

My son, Stalen, was diagnosed on the autism spectrum at 21 months old. He is now almost six and non-verbal. People always say to me that they think things (autism) will get easier as Stalen gets older. I really hope they are right! But, I don’t think that’s entirely true. One thing that I have learned since his diagnosis on January 16, 2017 is to never ever underestimate autism. Sometimes we win a battle but the fight always continues. I don’t think autism will get easier. That’s not me being negative—but real and truthful. I think as Stalen ages we...

Keep Reading