Driving down to California that hot day in July, gave me a lot of time to reflect on what had happened during the previous 3 years. I started thinking about the year that I turned 27, 10 months before Oli was born.
Kekoa was only 7 months old. I have a picture of him and me on my birthday that year. He was sitting on my lap helping me to eat a piece of cake. What strikes me most in that photo is how young I look. How peaceful. The worry of doctor appointments, evaluation deadlines, and missed milestones had not yet been etched on my face. That deep penetrating sadness cannot yet be seen reflecting in my eyes. Grief cannot yet be seen shadowed over my shoulder. I had no idea what my life would look like just 3 short years later.
I can’t help but think about what my life would have looked like if I hadn’t had Oli.
Would I still be ignorant to things such as early intervention services, occupational and speech therapists, VI teachers and O & M specialists? Would I miss the looks that strangers give to those who are different than them? Those looks that say, “What is wrong with her? Oh! What is wrong with her?!” Those looks that break my heart. Would I be oblivious to the passing remarks containing the word “retard” or the jokes made about blind people? Would I miss spotting the looks of exhaustion and overwhelming sadness that I see painted all over the faces of other special needs moms? Would I appreciate every single day with my children as much as I do now because I fear that I don’t know what the future will hold? Would I cherish their kisses as sweetly or hold on as tightly when they wrap their arms around me? Would I have learned to walk through the grief and come out on the other side stronger and more secure than ever before?
These are all things that I thought about, but did not have the answers to yet, in July of 2009. That year my sole focus was still on changing it. I wanted to change my life however I could so that I would begin to feel better. I needed to feel like I was DOING something for Oli. Being her mother just wasn’t enough.
As I was lying on the beach or trying to sleep in a strange bed that weekend, I became consumed with what I could do for her.
What I was doing wasn’t enough.
It wasn’t enough.
I should be doing more.
Other mothers were doing more for their kids.
I needed more.
I needed to do more.
I have to get out.
I have to get out of Nevada.
They can’t help her.
They can’t give her the help that she needs.
There has to be more.
There has to be a place that can do more.
My mind was trapped on a hamster wheel, spinning, spinning, and spinning. Chasing an unseen assailant that was ruining my life. Chasing a dream that I would be able to change it all. A dream where I was able to fix this somehow.
Still…a dream that I would wake up to a daughter who was “normal”. A daughter who was not blind and developmentally delayed. That dream that I secretly lived in while the world moved on without me. The world moved on and left me alone with my self-doubt, self-pity, and self-hatred.
Because I didn’t want to feel this way.
I wanted to just love her and believe in her.
I DID love her and I DID believe in her.
I didn’t JUST do it though.
I thought that all of those feeling were abnormal. I thought that they were wrong. And I thought that they made me a bad person. A bad mother. Even though those thoughts were my truth. They were my reality and no matter how much I tried to ignore them, forget them, and deny them…they were always there.
They were there taunting me, shaming me, and making it difficult for me to breath.
They told me lies like, you are alone. You are a failure. No other mother in the world feels like you do. You don’t deserve to have these beautiful children. You are not good enough. You will never be able to do enough. You can’t help her. You will ALWAYS feel this way. You will always be terrified, sad, and miserable.
And I was. For a very long time I was.
I didn’t know what was making me feel that way though.
All I knew? I was unhappy and I needed more support. I needed more support for my daughter.
I waited until we began our drive back to Pahrump to broach the subject with my husband.
As the sun dipped silently beneath soft orange clouds I built up the courage to say, “I was thinking…maybe we need to look into moving to another state. Somewhere that has more vision services and can help us better.”
A million butterflies danced and turned somersaults in my stomach as I looked at my husband, waiting for his response. You could have cut the tension in the air with a knife, once those words were out of my mouth.
A few minutes past and then my husband spoke…
