noonan syndrome

Noonan Syndrome

“Male Turner’s syndrome” occuring in both sexes.

Common features:

1. Short stature

2. Downslanting palpebral fissures

3. Ptosis

4. Low set, malformed ears

5. Webbed neck

6. Shield like chest

7. Pulmonic stenosis

8. Cryptorchidism

Mental retardation occurs in ¼ of affected individuals. Noonan’s syndrome is associated with advanced paternal age

Cool news I guess? I’m having a test on my lymphatic vessels today where they’re going to inject a dye and basically if they don’t see the dye in my chest I get to reschedule my heart surgery which I’m praying is what happens but I also have noonans syndrome and ppl w that have like a 30% of having problems w their lymphatic system. Soo even tho I know I probably will have problems I’m hoping I’ll get lucky and don’t and then I can get this damn surgery done with

Pink Polka-Dotted Rollerblades

You need pink polka-dotted rollerblades to keep up with the class.
My Kindergarten teacher once laughed. An innocent joke, but words I still remember to this day
Because it would seem I’m not allowed to forget the way
people see me differently.
I have Noonan Syndrome.
And on a good day I’ll only be reminded of this once.
But there always something reminding me. There is what seems like an endless list of ways one can be affected by Noonan Syndrome.
Heart problems (I’ve had 2 open heart surgeries),
Learning Difficulties ( I struggled my way through school),
‘abnormal facial features (you may notice how my eyelids droop)
and short stature; just to name a few.
But what I find affects me Wgat gets to me most about my NS won’t be found through any Google search.
It is the words.
The words I am forced to hear and take and interpret and make my own.
“You need pink polka-dotted rollerblades to keep up with the class.”
Keep up. Keep up. Keep up with the class.
You need to keep up with the class.
Except you can’t keep up with the class.
The class that moved
at such an overwhelming pace.
I often wondered how much more I could take
The class,my peers,
With more words I was forced to hear
and take and interpret and make my own.
“Why do you get special treatment?”
Special treatment to keep up with the pace.
But don’t you realize this isn’t a race?
This isn’t some game I’ve rigged in my favor
These accommodations were not given for me to cheat but to give me equal opportunity.
I try not to let it,
but even the innocent words of children, voicing their genuine curiosity, gets to me sometimes.
“Why are your eyes creepy?”
“Why are you so small?”
“What’s wrong with your hand?”
I always force a smile and say
“That’s just the way I am.”
It gets to me because even without words I can see, that’s what others wonder with their stares.
They’ve just been taught from experience not to ask
To pretend not to care .
It’s not always the words but the tone.
You know exactly what I mean.
Your pitch your inflection, dear stranger has me wonder,if you think I’m a child. Don’t tell me you don’t do this
You see I may not always process things as quickly
but that doesn’t mean I cannot see.
The way you speak to your peer, both of adults,
yet your voice is slower, softer, higher, words chosen more simply, when speaking to me.
My college professors as
I did all I could to pass my placements says “You might do better as an assistant.”
That’s all you’ll ever be
Is what I hear as I realize you do don’t believe in me.
Just an assistant in your field of work.
But despite your words,
here I am an ECE
not an assistant ECE
Can’t you see?
I will never let your words limit me.
My co-worker says to our newest staff member “Meghan can’t do that so I’ll show you how.”
Execpt your wrong it’s not that’s I can’t, if I were to try.
I just might take a little more time.
You need pink polka-dotted rollerblades to keep up with the class
Keep up keep up.
Fuck this just shut up!
I will not let your words limit me.
These words you speak
I will hear and take and interpret and make
into my fuel for my fire
To drive my desire to prove you wrong!
Because I also was told I wouldn’t live long.
Yet here I am. Nobody can tell what I need What I should be What I am capable of except for me. I need to do things at my own pace But in case you’ve forgotten This isn’t a race. I am going to take it day by day. Of course I may need help along the way There’s no need to keep up with anyone else  as long as I just keep going My own way Somedays It is difficult Sometimes I feel stuck But I grantee you there will never be a day that I will give up. I have Noonan Syndrome. No I do not need pink polka-dotted rollerblades to keep up with the class. Just let me do things at own pace Maybe even in my own way and I might just surpass All of your  expectations of me