Tag Archives: doctors

I Know.

18 Apr

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.

This card pisses me off!

3 Apr
This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This post has been brewing for a while. I had to write a little something about this card, or cartoon, or blasphemy, whatever you want to call it. Let me just tell you, this picture PISSES ME OFF!

Aaahhhh! (Imagine me yelling at my computer screen) <—This is my frustration with this gem every time I see it float past my news feed on Facebook. And I have seen several versions of this one. I can't take it anymore! I can't keep my mouth closed any longer or I will start banging my head against the computer screen, rendering myself completely incapable of complaining about random things that are annoying me.

Really?

Your ONLY special need is to be loved?

Ummmm… no.

NO!!

No it’s not!

I’ll tell you why it makes me so mad.

It completely and totally minimizes all that MY special needs child has to go through to live in this world. My blind daughter who has to navigate around in the dark in a sighted world. My non-verbal child who has to try to be understood silently in a world full of language, subtle communication, and written words. My daughter has to survive and thrive in a world that doesn’t always understand or like people who are different. People who don’t have time for, or an understanding of, or compassion, or empathy, or a sense of humor, or many more things that are needed to understand, love, and appreciate a person with autism and other SPECIAL NEEDS.

It completely and totally minimizes all that WE have to go through as special needs parents. Her only special need is NOT just to be loved. It’s a whole hell of a lot more. All children need love. That one’s easy as a parent. I always love my kids. I may not like them very much sometimes (that’s a whole different post), but I ALWAYS love them.

She has specific special needs.

That’s why we call them special needs kids. Otherwise we would call them regular needs kids right? Or normal? No. Not normal. That’s a setting on the dryer. Vanilla? Plain? Average? Non special needs? Neuro typical? What? Kids. I have my kids. 3 of them. Or 3 children and one of them has special needs.

She has many more special needs other than just to be loved.

She has seizures, she takes a bunch of medicine, she doesn’t walk very well, she needs a walker at school, a walking wand, my hand. She’s not potty trained yet, she doesn’t talk, she can’t see, she has epic meltdowns, she doesn’t sleep well, she has stomach issues, she has to eat special food, she needs special therapies, special equipment, special people in her life who appreciate all that she CAN do and all that she is CAPABLE of doing in the future. She has enough doctors, teachers, specialists, therapists…ect., to populate a small country. Sometimes I feel like I am running my own country. I am a dictator here in Oliland.

This minimizes all of the people in her life who work so hard for her. If we just said “Oh. Her only special need is to be loved? Great. Job accomplished. Pass me an award. We did that in our first 5 minutes with her.”

It’s so much more than that!

It’s okay to acknowledge that our kids are different. That they need different ways to help them learn and live and love and grow to be amazing people.

And it REALLY pisses me off that they use the word only in front of the word special needs. Don’t even get me started on that one.

Only? Only!!

NO. Wrong.

You are NEVER allowed to use the word only and special need in the same sentence.

Never.
Rottenecards_67544825_kjfnb2tb84

I Need A Cocktail!

2 Feb

“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” ~Hubert Humphrey

And so it began…

As awful as that first evaluation was, I knew that it was only the first of many. Countless interactions with doctors and specialists, listing endless possibilities of what could be wrong with her. I know that they were trying to help us but, I started to feel like I needed anti-anxiety medication or a stiff drink every time I walked through their doors.

What kind of syndrome, disease, or affliction hypothesis are they going to throw at me today?

Sometimes I knew right away as I rushed home to Google their current theory.

Okay, I know she doesn’t have that!!

Sometimes I came up with my own diagnosis.

Whoops! Cats out of the bag!

I still do that sometimes.

(Didn’t I mention that my special needs mother hat also came with a medical degree.)

I guess in a way I am lucky. I knew right away that something was wrong with Oli. I’ve never had to search out doctors and try to convince them that something is wrong with her.

Ahhh…the silver lining?

On the other hand, I have had to convince them of things that are not wrong with her.

Yes, I promise you she can hear.

Yes, she really can feed herself a little.

Yes, she really can repeat a few words.

Yes, she really can walk a few steps by herself.

Yes, I promise you she does smile and laugh.

You are just not warm and inviting enough to have earned her smile nor are you funny enough to have earned her laugh.

Poking at her probably doesn’t help.

Sorry but, your loss.

Fix her

21 Jan

“Once you had put the pieces back together, even though you may look intact, you were never quite the same as you’d been before the fall.” -Jodi Picoult

I used to get so mad when people would try to talk to me about “fixing” her.

They would say things like “You never know what the future holds. Someday they will invent a way for her to see”. I didn’t want to hear any of it. I knew they were just trying to give me hope and trying to get me to see the rainbow at the end of all this but, I couldn’t hear it.

I again, being a –worst-case-scenario- girl, wanted to make myself believe that she would never be able to see. Secretly, this was only part of me.

Secretly, I wanted to have hope.

Let’s face it. I am a nurse. I wanted them to give her some kind of magical pill or hook her up to some kind of machine and fix her. I just wanted so desperately to wake up one morning to a baby with vision. I wanted someone to tell me what her future looked like and that she would be okay.

I had that tiny seed of hope for a little while. Until one day I didn’t.

Until one day the growing list of things wrong with her outweighed any hope I had of her living a “normal” life and the disappointment became too much. Until one day, another doctor, another specialist, another therapist unknowingly squashed that little seed of hope like an insect they didn’t even notice. They never noticed that little seed of hope that I had for her future.

Let’s talk about all of those specialists.

Let’s talk about how to approach new parents of a special needs child. First of all, if you’re the pediatrician delivering devastating news to parents about their newborn, you should probably wait until both parents are present in the room. Not tell the new, already hormonal mommy by herself in the hospital room. You are changing somebodies life forever. You need to be compassionate and gentle. You need to have some kind of emotion.

Also, sometimes parents need a break in between all of the bad news. You can’t just sit parents down with a newborn and give them a 4 page list of everything they think, might be wrong with her. I don’t know. Break it up a little. Give us a coffee break. Offer us some pastries. By this I DO NOT mean send us back into your tiny overcrowded waiting room where we have already been sitting for the past 2 hours. Your waiting room is not that cozy and I do not enjoy your uncomfortable chairs or your rude receptionist. Obviously I’m not exactly sure how this should be approached with new parents. But, I do know this. They way it was done with my husband and I wasn’t conducive to acceptance.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

The Formerly Hot Housewife

weight loss, healing, and new self discoveries

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Mom Rants and Comfy Pants

Ramblings From a Veteran Mom Who Hates Skinny Jeans. Ever Feel Like You're Swimming Upstream?

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.com/

Motherhood and Coastal Living

%d bloggers like this: