I slip quietly into my 6 year old daughter’s room and avoid turning on the light. Before I wake her up for school, I peer through the darkness to stare at her peaceful sleeping form. Her eyes are closed and she has one hand resting gently on the side of her face. She’s kicked off all of the covers and is lying on her stomach with her knees tucked up underneath her body. She’s so still, so quiet, so lovely.
I bend down and place my hand on her back, whispering close to her ear “Oli. Oli. It’s time to wake up now.”
Slowly her eyes begin to flutter open. She puts her hand over her face and moans softly.
“I know honey. It’s time to get up.”
I sit her up in bed and lift her up and over the baby gate that keeps her from falling off the bed at night. She rests her head on my shoulder as I carry her down the stairs. Her body relaxes against mine as I talk quietly into her ear and ask her about her dreams.
“Did you sleep well baby girl? Did you have nice, happy dreams? You did, didn’t you?! You had nice, happy dreams and you woke up with smiles and are going to have a great day today. Today is going to be a fantastic day. Aren’t you excited?!”
I set her down at the bottom of the stairs and hold her hand as she walks into the living room. I guide her around the furniture and push random toys, which are lying in her path, away. When we reach her favorite maroon colored chair in the living room, I ask her to reach out her other hand.
“Here’s your chair Oli. Here it is. Now turn around and sit down while I go make your breakfast.”
She turns around slowly, scoots back, and curls up in the chair. I continue talking to her, telling her about the day, and asking her questions.
But Oli doesn’t talk back to me.
She doesn’t answer my questions or tell me about her dreams. She doesn’t complain about being tired or say that she doesn’t want to go to school. She never says that she doesn’t like her outfit or the way I’ve done her hair. She doesn’t wake up in the morning and run down the stairs, demanding breakfast or fighting with her siblings. She never wanders into my room to wake me up first, even though she’s six.
Oli doesn’t say anything. Oli doesn’t walk or run around on her own.
Because she’s nonverbal.
Because she’s autistic.
Because she’s globally developmentally delayed and has seizures.
Because she is also totally blind.
Oli was born without eyes.
Severe bilateral microphthalmia. That’s what her eye condition is called.
Blind. No eyes. Severe bilateral microphthalmia. Those words ran through my head a million times in the first few months…no that’s a lie, the first few YEARS after she was born. My baby girl was blind.
I couldn’t believe it. I had no idea anything was wrong with her before she was born. I had no idea until an emotionless doctor walked into my hospital room on her second day of life, while I was sitting on a bed with crisp white sheets, all alone, and announced that he didn’t think she had eyes and was going to be blind for the rest of her life.
What? What did he just say? Blind. No. No! That couldn’t be right! I didn’t sign up for this! No one told me that this was a possibility when I decided to have children. I was supposed to have healthy children! My life was supposed to be filled with roses and rainbows and beautiful sunsets. Blind? How could she be blind? I had never even met a blind person! What the hell was I supposed to do now?
No one could tell me. No one really knew. We went to LOTS of doctors and specialists and sat through TONS of evaluations and examinations. We were told that she would NEVER do this and that she MIGHT do that. I cried, I pleaded, I screamed at God. I prayed that things were different. I wished that it had been me that had been born blind and not her. I couldn’t sleep. I couldn’t eat. I couldn’t understand why. Why did this happen? I dreamed in fantasy lands where my life made sense and I recognized myself in the mirror again. I pressured myself into exhaustion worrying about what she would be able to do. I lied to my friends at work and bragged about things that she wasn’t even doing yet.
“How’s Oli? Oh she’s great! She’s 18 months and learning to walk. That’s exceptional for a blind child! She’s doing so well! She’s right on track!” This is what I told everyone. This is what I WANTED for her. The truth? She wasn’t walking at all. Not even close. Unless you count me carrying her around with her feet brushing the floor and me moving her legs back and forth. Is that walking? No? I don’t think so either.
I used to think that her slower progress was somehow a reflection on me as a mother. I thought that if she didn’t do all of the “normal” childhood things and hit those milestones in a timely fashion that I had somehow failed her.
Turns out? I was wrong. What she is able or not able to do has nothing to do with my abilities as her mother. She will do what she will do regardless of how much time I spend worrying about it. Regardless of how much time I spend crying over it. Regardless of how much time I waste wishing it was different.
I also never told anyone how broken my heart was. I never said that once the sun went down and my family went to sleep, I sat out in my living room for hours crying and sobbing until I had no more tears. I never told anyone how much I hated it. I thought that if I said “This is really hard” you would hear “I don’t love my daughter.” You never heard that at all. You heard “This is really hard”. It was all in my head. I was wrong about that too.
Eventually, ahem…5 years later…I learned that I had to accept her for who she is. I had to come to terms with the fact that this was HER life, HER struggle. It was who she was. No matter how much it felt like this had happened to ME in the beginning, it hadn’t. It had happened to Oli. My only job was to love her and support her in any way that I could.
I stopped listening to doctors and therapists who told me that she would NEVER do ______. They don’t really know. How could they know for sure? Oli is the only one who gets to decide what she will or won’t do. Only her. No one else. The absolute best doctor we ever went to was an oculoplastic surgeon at UCLA that when we asked him if she would ever have light perception said this, “Based on the MRI evidence that she is missing her optic chiasm, the possibility is unlikely. If it truly is missing, she will not see anything at all. However, I am only a doctor and the MRI is only a machine. We get it wrong sometimes. Oli will have to be the one to answer that question with any absolute positivity.”
I know right?! The BEST answer. And you know what? He was right. He was right in regards to all aspects of her life. You never know what a child will or won’t do until they show you what they are capable of.
As parents…all we have to do is keep believing in them.