Covering her right eye. "Evie, can you see me?"
"Yes Mama" she says as she touches my face.
Covering her left eye. "Evie, can you see me now?"
"Nope."
Covering her right eye again. "Evie, what do you see?"
"I see your nose, and your eyes. I see you Mama."
Covering her left eye again. "Ok Evie, what do you see now?"
"Nothing."
"Ok baby, good girl. Now listen to me. I love you. I really, really love you. Do you hear me?"
"Yes Mama."
"I love you Evelyn." I squeezed her tightly and let the tears fall down my face, squeezed her as
much as I could before she wriggled her way off my lap and ran away to go play.
It's been a month since I found out that she had lost vision in her right eye.
Like a dimmer switch, slowly fading away.
She is not scared, or at least not yet.
But I am. I'm terrified. It is so painfully difficult for me to imagine not being able to see. I understand that many people suffer from vision loss. I get that there is so many resources. I am learning that there are many tools available to help in every which way you can imagine. But I don't care. To me, this is devastating. It totally sucks. I hate it. I don't want it to be real. I'm angry that it is. And if one more person tells me, "It's ok, she still has one good eye".....I think I might just smack them.
When I try to rationally think of why I am so upset about this, I'm pretty sure I know why....but what I don't get is why others are so quick to downplay it. Are my closest friends and family simply trying to remind me that it can always be worse, or do they actually not think this is a big deal? If you lost 50% of your vision, don't you think you would be a little concerned? I mean, seriously...people get upset over glasses, even if their prescription is minimal. I'm upset about ZERO vision, and I keep getting glass half full reactions. I know they are upset, and I know they are trying to help, be hopeful. But a big part of me just really wishes someone had the balls to just get pissed off along with me....instead of trying to make it better.
When Evie was first diagnosed, we were told many things. So many in fact that I was given a binder and reminded to take notes and write down my questions and concerns. The main things I remember repeating to family and friends were: benign, non life threatening, slow growing, 60 week treatment, not surgical, maintaining vision was primary concern. Those actually sounded comforting, manageable, less scary at the time. However, in the past three years I have found out that benign really isn't benign if it is affecting the body in some abnormal way. Non life threatening became life threatening and surgical a year ago when the tumour grew too large....which also proved it was not as slow as they thought. 60 week treatment has turned into 3 years and 131 days of chemotherapy. Vision has been slowly diminishing. Everything I was set up for.....it was wrong. I held on to each of those things, until I had none left.
It's not a blame game. I do not fault any of her medical team, and I am not implying I was misled. It's simply clearer to me now more than ever that this really is beyond our control. We are doing what we can, but it's still totally up in the air. It's not that I have lost hope, but I am surely disheartened.
Evie losing her vision was almost like a line in the sand.
This cancer, this tumour...this is no longer something that she will have "gone through as a small child, and won't remember". It won't simply be something we tell her stories about. It has now taken away a part of her that she will not get back.
As if she hasn't lost enough already.
