May I ramble a bit?

[doxdogy]

First some background to set up this rambling. I have the disorder neurofibromatosis (NF). It is a genetic disorder that is either inherited or in my case a spontaneous mutation. There are two types central and periphial. Central is considered the worst of the two medically. With central the fibromas mainly grow under the skin and with periphial the fibromas are located above the skin surface. I have the periphial. Some of the fibromas are on my face. Which can be a shock to look at first glance. They tend to stand out more when I am either tired, stressed or aggravated.

Now for the rambling. I have gotten pretty much use to people staring at me. But, what upsets me the most is the fact that some parents haven't taken the time to explain to their children that some people are different and have disabilities. I have gotten pretty good at figuring out which kids are going to say something out loud (loud enough) for me to hear them to their parents. I am in the grocery store today and sure enough this child says to her mother is that what happens when you don't wash your face. For a split second, I wanted to yell you know I am not deaf, and I can hear every word you are saying. But, I didn't I just sighed, stared and walked away. Fast forward to finsihing up my shopping. I see a former co-worker and she has a beautiful little girl. Her little girl looks right at me and says see I have pigtails. Not one mention of how I look to me or her mother. The reason I don't say anything is I either don't want to cause a scene or I guess in a way I don't want to embarass them or myself any further. But, can't they at least turn around and apologize to me? I am getting ready to try some corrective cosmetics that will hopefully solve the problem. Because, now when I go on interviews, I am getting the startled looks. Okay rambling finished. Thanks for letting me ramble.

 

[kejoda]

Doxdoggy, we had a family friend that had NF. She was truly the most beautiful woman in the world to me.

Kids will say things they just don't know any better. The ones you can blame are the parents.

{{{HUGS}}} live isn't always easy.

 

[Pin Wizard]

(((((((((((((((doxdogy)))))))))))))))))))

Comments can certainly hurt. An apology by a parent would be a nice thing to do. I've seen parents apologize for less. Hoping the new make-up helps!!

 

[Poohbear123]

for sharing your story. I have a customer in my store, that has what you have, but about 4 times worse than you. I always make eye contact with him, and and say hello. When I was a Cashier, I always made sure I asked how he was doing, when he came in my line, and took his money from him like I would anyone else---his palms are really soft, and had no bumps at all.

 

[jamsmom]

{{{HUGS}}}

 

[nativetxn]

<b>doxdogy</b> My husband's father had severe peripheral neurofibromatosis, his seemed to get worse as he aged.

There were two girls and one boy born to this man. My husband's two sister's both have neurofibromatosis, one more severe (skeletal problems as well as the skin fibromas). My husband was born without this illness.

People can be very, very cruel. I don't understand cruelty in humans, I never have and I doubt I ever will. At the end of my fil's life I took care of him for about 3 months. I actually had to ask a home health aide to leave the house because when my fil removed his pajama shirt to be bathed the aide, a huge, tall, very brave young man, became hysterical and refused to touch him because it might be catching. This broke my heart and made me so angry. I bathed him instead because I loved him too much to make him have to suffer such cruelty.

I am so very sorry that you were hurt like this. Children learn their behavior. Such a sad thing. I wish there was something I could say to make it better for you, I'm so sorry that there isn't

Katholyn

 

[doxdogy]

Originally posted by nativetxn
<b>doxdogy</b> My husband's father had severe peripheral neurofibromatosis, his seemed to get worse as he aged.
Katholyn

Yes, it is a progressive disorder. Like your FIL the majority of mine are located on my abdomen.

Thank you all for your kind words, I knew that I could come here and ramble and get kindness and understanding. It does mean the world to me.

Theresa

 

[SuiteDisney]

(((hugs)))

 

[snoopy]

Ramble away, doxdogy. I'm sorry that you were made to feel bad today.

Thanks for the education, I have never heard of this disorder before.

 

[nativetxn]

<b>doxdogy</b> Were you rambling? I didn't notice that. I just noticed a fellow DISer who had been hurt and felt maybe a little sad.

{{{HUGS}}} sweetie. We're always here for you. Just call on us when you need us, that's what the DIS community is all about.

Katholyn

 

[Lars624]

{{{{{hugs}}}}}

 

[JohnTBap]

I'm sorry that you must bear this burden. You must be a very strong person. I know that you are kind and caring just from what I have seen here on the boards and through our PMs. I don't know why some of us have heavier crosses to bear than others. I can only trust in His infinite wisdom. People really suck sometimes, don't they? Well, you can always trust a dog. They can see through the superficial. And you have the weenie dog stamp of approval - and I think that says a lot. God bless you. {{{HUGS}}}

 

[helenabear]

I am so sorry you were hurt like that People can be so cruel sometimes {{hugs}}

 

[Dan Murphy]

doxdogy, among friends here, no ramble at all. Just looking for a little support and a kind word, a {hug} too. Hope you are smiling there, my friend. {{Hugs}}

Dan

 

[Piper]

Theresa, I have NF, type I. Most of my fibromas are internal--some on my spine. I have about 20 visable fibromas mostly on my hands and arms, but a few on my neck and face. I also have scoliosis and some cafe-au-laits. I think one of the hardest things about this disorder is the fact that you never know what tomorrow will bring--which fibroma will get bigger or where the next one will be.

I teach and have always been honest with my students--explaining as much as I can. I also tell children or adults who make remarks or stare about NF---I try to use the opportunity to make people aware. It is ironic that it is more common than any other neurological disorder and yet most people don't know NF exists!

Feel free to PM me anytime you want to talk. I truly understand.

 

[lisajl]

Sending you {{{{HUGS}}}}

My ds was in first grade when he said something.

A friend of mine is morbidly obese and she was helping out at the school.
My ds said something quietly to a friend(about how big my friend is) and ds's friend said it out loud.

My ds started crying and said he did not mean to say it, it just came out.
I had a long talk with him. The good thing...a few days later something similar happened between the first graders.
My ds repeated the advice I gave him.
It sank in, and he has never said anything like that since.

I am sorry people can be cruel. Know that we care about you.

Lisajl

 

[Serena]

{{{{{hugs}}}}}}} I am sorry you were hurt.

 

[Kitty 34]

Doxdogy, I'm sorry you have to hear people's remarks like that. {{{{{{HUGS}}}}} to you and feel free to "ramble" whenever you need to!!!

 

[disfanatiks]

Dear Theresa,

First of all...Hi Neighbor!!!! Seems that we live in the same city.

{{{HUGS}}} I am so sorry that you have to endure this type of pain. My heart goes out to you. I will say a prayer for you in your upcoming interviews and that people will be a little kinder to you.

I taught my child at a very young age not to stare or make comments about people that might be different. I hope that this always stays with her. Your post reminded me to bring this subject up again as it never hurts to reinforce this to children.

Again...{{{hugs}}}.

Teri

 

[Mskanga]

HI Theresa!!
I have a customer who has the same thing you do and her case is severe on her face but that doesn't stop me from talking to her or treating her like anyone else without a problem.
My kids have always been told that people are all the same, inside we all have feelings, a heart, a brain etc etc , but on the outside we all look different, some people have brown hair , others have blonde, some people have blue eyes, some have brown, some people have legs and some people have a wheelchair as special legs, and so on. I teach them that they have to be accepting of people for who they are not for what they look like. Of course I had the question once with a lady who had only one leg and was riding a wheelchair at walmart and she asked me what happened to the lady's other leg ( she was 4 at the time ) and I told her that some people have just one leg and they use the weelchair so they can get around and do as many things as they can , that the weelchair is their special legs.
She was happy after that and the lady actually thanked me for not shutting her up and for giving her an explanation that she could understand that people with disabilities are people.
Now in my DD's classroom there's one little girl who was born with a birth defect and her face is a bit disfigured. Just recetnly I overheard two mothers asking if she ever had cosmetic surgery and wondering how the kids treated her in school. That really ticked me off because the same way I heard it, the child's mother could have too , and I told them , the kids don't treat her any different , they don't know the difference as she acts just like them all.
They said that one day while having a party in school.
When parents see a difference and talk about a difference , that's what our children will learn.
I also tell my oldest, if you have a question, ask without fear, chances are the person will be more than happy to answer any questions you may have.
I'm sorry theresa that some people were so inconsiderate and hurt your feelings.