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Connecting NF Style

Tags: parent

You know how when you are driving around....And you spot someone on the road driving the same kind of car you are in...?  You take that extra time to check the other car out....Maybe even smile and wave to driver...Like you have some sort of connection with them....Even though you are complete strangers.  :)

Well...This kid started working at the theater I work at, and I did that..."Hey, something about him is familiar..."  I just started noticing that he and I had something in common.

It's weird.  When you meet a total stranger, who has the same condition as you.  It's a crazy feeling that is hard to explain.  It's like you are friends, before you even speak.

This kid, is 18 years old....Has Scoliosis (an obvious curvature), slightly bigger head, deep set eyes...And cafe au laits spots on his arms....Which were what prompted a conversation about Neurofibromatosis.

I feel sad for this boy...He tells me that he has no one to talk to about what he is going through.  He is the only one in his family who has NF....And his parents are in denial and refuse to take him to the doctor.

We were on break together...And he had his head on the table.  I asked him if he was okay, and he tells me that he gets really bad headaches.

"Is this normal...?" he asks.

My motherly instincts kick in and I slide my chair over to him.  I told him about my headaches...and that he needs to communicate to his parents about this.

He has never had an MRI....And he asks me what they are like....And we spend the rest of our break talking about tumors and headaches.

Part of me whats to hunt down his parents, and shake them...and MAKE them care!  I understand being scared and not wanting to deal with this.  I get the thought of wanting to shove this in the corner and and ignore it.

That's what my parents did.

I get the fear and guilt.  But fear and guilt do NOTHING but make things worse.  Especially when you are using them as excuses.

The other day this boy and I are passing each other at the time clock...He told me that he told his mom that he met a lady at work who also has NF....He went on to say that him and his mom are going to the doctor next week to talk about his headaches.

I was so happy!

He said THANK YOU to me......"For what...?" I asked.

He said...."For talking about NF and not being afraid....For helping me not be afraid...And maybe...for helping my mom not be afraid...."

This folks, is what it's all about--


This post first appeared on Thriving With Neurofibromatosis, please read the originial post: here

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Connecting NF Style


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