“I thought that one day I would just wake up and have all of the answers. What I have found is that the answers I get, rarely have anything to do with the questions I ask.”
It was a warm day in June 2009 and I was sitting on our cream colored leather couch in the living room. I’m sure there was a cartoon on the TV that I had forgotten to turn off when my kids laid down for a nap. I was alone, which for some reason, I usually am when I get bad news. My husband was at work.
The phone rang and I glanced down at the caller ID.
I normally don’t answer calls labeled unknown and let them go to voicemail, but on that particular afternoon I answered it.
That is where I was sitting in the moments before I took that call. I didn’t know what Oli “had”. I didn’t know why. I didn’t have any answers. Why had her eyes not developed in utero? What was wrong with her? Why was she so different from other children her age? Why was she 2 years old and not walking or talking yet?
At that point in her life, I needed to know why.
I thought that if I knew why, I could help her better. I thought that if I knew why, then I wouldn’t be so angry with the world. If I finally got an explanation as to what had happened, then I could come to terms with the whole mess that had become my emotional prison.
I found out why, on a warm day in June when my phone rang and I answered a call from the Albert Einstein Medical Center. They were calling to tell me the results of Oli’s genetic testing.
I found out why it happened, but I did not find out why it happened to her. Which is really what I wanted to know all along.
Why did it happen to my family? Why us? Why did fate choose my sweet, innocent, beautiful little girl to bestow such a big obstacle on. A big difference. A hardship.
You see, for a long time I thought that this was some kind of punishment. I couldn’t understand why this happened to me. To my baby. I was a good person. I never hurt anyone intentionally. I had a good life. A happy life. I grew up with a great family. I had friends, went to college, had a job. I was grateful for my life and was just going along trying to be the best person that I could be.
And then…the ground fell out from beneath my feet.
I thought it was all happening to me and my family. It was my son and my husband who were affected by this.
I took on ALL of the responsibility of the health and happiness of my little family because I was the wife. I was the mother. I was supposed to protect them, keep them safe and ensure their happiness.
And then Oli was born.
She was born and I wasn’t sure that I could do any of it anymore.
If I could not stop, prevent, change, or fix what had happened to this little person that I had brought into the world, then I could not stop, prevent, change, or fix what happened to any of them. That realization hit me like a 2 ton steel truck, right smack dab in the middle of my forehead.
When I realized that…I began to react and operate by my fear.
Fear of this big, scary world that had walked into my hospital room on another warm day in May, 2 years previously. That unknown world walked right in, handed me a big pile of crap called unmet expectations and promptly walked right back out of that room.
Oli wasn’t what I had expected. She didn’t fit into my box. The box that was supposed to hold my perfect little life. No matter how hard I tried to cram that square peg into that round hole, she would. not. fit.
When I answered that unknown phone call, I still had expectations. I expected to hear that she had SOX2. Something that lots of other kids had. This particular gene deletion is responsible for the majority of microphthalmia and anophthalmia.
You know what I heard instead?
I heard that she did NOT have SOX2. I heard that she had something else. Something that was not very well known or very common.
A gene called OTX2 was deleted from her 14th chromosome and caused her eyes not to develop.
They didn’t know a whole lot about OTX2. When they diagnosed Oli she was one of only 15 kids in the world known to have this deletion.
I expected to finally have an answer, a plan. I expected to find out her diagnosis and then hear, “She will do this at this time. Talk at this age. Walk at this age. Have this ailment, but never suffer from this one. She will go to college. She will get married. She will wear a pink dress to the prom.”
These are the things I wanted to hear when I got that phone call. I thought that I would finally have answers. Real answers. A plan. When I got the diagnosis, I expected a map for the rest of her life to be laid out during that phone call.
What I got instead was….we don’t know?
We don’t know what her future will look like. We don’t know when she will walk or talk. Or if she will at all. We don’t know if she will go to college, ever have a boyfriend or get married. We don’t know if she will ever even be able to live on her own. We just don’t know.
My expectations, the ones that I had been relying on this whole time, were shattered like a mirror when I got that diagnosis. Her future, reflected in that piece of glass that I had been focusing on for 2 years, came crashing down around my feet.
Now I had a diagnosis, but I was no closer to any answers. No one could tell me how to fix it for her or what I needed to do as her mother, to make her fit into this life. Because no one knew what this life would look like for Oli.
I hung up the phone and gazed out of the window towards the mountains in the distance. Tears freely rolled down my cheeks and I made no attempt to wipe them away.
Now I knew what had happened, but I realized right at that moment, that I would never know why.