I don’t know why I still feel the need to read through every new doctor report that I get about Oli. Especially when they are brain scans like MRI’s and EEG’s.
I mean, I know what they will say. I know how they will make me feel. I know that by the time that I reach the end of the report, I will feel that familiar heartache, sadness, emptiness, and hopelessness that I always walk away with.
I know that it will take me right back to all of those feelings that I felt, and ran from, in the beginning.
I don’t know why reading certain words about her makes me feel the way that it does.
I know that she is cognitively delayed. This is nothing new. I do know that there has to be changes in her brain that make her unlike other children her age.
I know that there are physiological reasons why she cannot dress herself, go the bathroom by herself, brush her teeth, talk, walk well, control her emotions…
I know all of these things, and yet I was still rocked and shocked when I read the words “static encephalopathy” on her latest EEG report.
My daughter doesn’t have brain damage. You, madam neurologist, are mistaken.
I googled the term “static encephalopathy”. This new, ugly label that you included in my daughter’s EEG report.
I googled it and I am totally regretting doing so. Although it didn’t really change anything. I already knew what those words meant.
Permanent brain damage.
Just seeing it written, actually written down, having been officially diagnosed, was enough for me.
Why did I have to read about it further on Google?
And why did the doctor not tell me herself that she suspected this?
Did she not know, that I didn’t know, that this is what they labeled her as?
Because I didn’t.
I didn’t know.
I just thought that she was delayed.
I always think that it is a possibility that she will be able to catch up.
Maybe not completely. Maybe she would always be unique, but aren’t we all?
Did they have to go and write down, WRITE DOWN, that she has permanent brain damage?
Don’t they even care about my feelings?
Shouldn’t this new label have required an actual sit down with the doctor?
Shouldn’t an official diagnosis of “static encephalopathy” require a meeting with my family to explain what this means for my daughter? Why do they have to be such assholes and write down something like that in a report?
The only reason that I was able to read it was because I requested all of her records for this Medicaid waiver program that we’re trying to get her on. I wasn’t mailed a copy or given this piece of paper upon discharge from the hospital.
Now I sit here, with my daughter sitting beside me, tears pooling in my eyes, and whispering “I’m so sorry” once again.
I’m so sorry Oli. I’m sorry that this happened to you. I’m sorry that this is something that makes your life more difficult. I’m sorry that I had to read this ugly label and feel sad for you for a little while. I’m sorry that I had to look into your beautiful face, put my arms around you, kiss your neck, and let you feel my tears as they dripped down onto your shoulder. I’m sorry that I can’t tell you why I am crying.
I will make you the same promise that I have made to you since the day you were born.
I will NOT let this define you.
I will NOT let this hinder you or discourage you or slow you down in any way.
I will NOT let doctors or therapists or teachers read this about you and let them make decisions about your future based on what a piece of paper says.
I will make sure that they KNOW that this is NOT who you are.
I will make sure that they see everything that I see.
I will make sure that the world treats you the same as everyone else and in most cases…better.
Because you are my special little girl. You are capable of achieving any dream that your heart desires.
It doesn’t matter what a piece of paper says.