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.
Static encephalopathy?
Brain damage?
Huh?
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.
Just 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.
This…
I KNOW.
I'm fine, but my mommy has issues! 
you are a strong, and brave and loving parent. oil is a strong and brave and beautiful child. and you are so lucky to have each other, as i always remember when i read your words.
*Sigh* That was my week last week. We were at our biannual visit to the neurodevelopmental and I was inquiring about the possibility of my daughter having CVI (cortical vision impairment). I had even written them ahead of time laying out my reasoning and questions. The answer the doctor gave me was “Why would you worry about that? She has so many other problems.” She didn’t disagree with me that it was probable that my daughter had this, she just basically said my daughter wasn’t worth doing anything about it. I was utterly dumbfounded. And angry. Very, very angry. Once I have my anger under control. I will formulate an appropriate response that will most likely include finding a different doctor, but not before her current doctor understands exactly why we are leaving her care. All I can say is I completely understand.
I feel the same way about my autistic daughter’s triennial school evaluations. Instead of getting them in the mail for you to cry over alone, they should have a “sit down” with you, especially if they’re going to throw a new diagnosis at you. Sometimes doctors and therapists can be real heroes and advocates, sometimes cowards and ignorant of the impact of their words.
But you’re right, Oli is still your beautiful daughter, and you love her as much today as you did yesterday – she is no different. The grief over diagnosis and fear of the future is real and we shouldn’t try to deny them or run from them, but we need to balance that by enjoying and loving the people our children are.
My prayers are with you.
I’m so sorry that you had learn that the way you did. It was disrespectful of the medical staff not to sit down with you and share those results.
She is your daughter, and you are an amazing mom. You will find your way together and it will be the magical, amazing way that it is supposed to be.
This brought tears to my eyes. Both of happiness and sadness. You have taken the emotions I hinder deep within my soul and put them into writting for all to see. I do not know what the future holds for my baby girl but I too, will not let it define her. Her “Static encephalopathy” is apart of her but is not her. Just another thing that makes her stronger than most could ever dream of being. Thank you for this blog.
Hi!! Where can we find you? I’ve lost you on Facebook and I really miss your beautiful family! ❤
Hi! I’ve taken the page down for a while. I might publish it again. You can friend me on fb if you want.
Shannon Pullen Gardner
Thank you for your message!