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Normal curiosity making me nervous...

aimee121477
  • By aimee121477
  • Posted July 12, 2008 at 12:20 pm · 16 replies
  • Shared with the public
0 Recommendations

Well it happened for the first time last night. My son was undressing for his bath. He looked at his belly which he proudly pointed out to me "belly, Mama!!" Then as usual he shows me all of his boo boos, lol. But then he looked at me at pointed at one of his larger cafe au lait spots and says "Mama, whats that?" I looked at him in suprise and started stumbling for words. How do I explain this to a 3 year old? So I just told him that it was his "special spots". I showed him a couple other ones that he had. He looked and laughed a bit then wanted to get in the bathtub.

Did I do the right thing? Did I say the right thing? I figured he would eventually ask me but I was not expecting it to be so soon! He is only 3, he will not understand what NF means, nor do I want to scare him even if he did.

Awwwwww!!! Being a mom can be so hard sometimes. I feel like any move I make can effect him for the rest of his life.

Explore topics in this journal entry and replies:

Surgery Adoption

16 replies

honor

You did fine. Mine were first noticed when I was 5. And thats what I mostly had when I was little was the cafe au lait spots. I didnt start getting the fibromas until I got older. And at that age it really wasnt a big deal to me. When I was six my doct sent me to see a bunch of specialists that were in town. It was Halloween and my dad felt bad that I would be missing out on the trick or treating so he wrote Trick or Treat happy halloween across my stomach. When I had to drop the sheet for the doctors to examine me thats what they saw. It made everyone laugh and I got some quaters dimes and nickels out of it. A local columnist even wrote about it in the newspaper. My parents never made it a big deal. And I always thought of my spots as my special markings.

Noelle

You did the right thing. Things will explain themselves as time progresses and he is able to understand things better.

Being a mom of a kid with NF is tramatic at times, but also joyful. Hang in there...

Love & God Bless
Noelle

carol_slone

My little boy is 8 and he still dosent know about nf. He knows he has it. I told him all of his dr apps are because of his spots. He dosent seem to bother him much. He just dosent like going to ot and speech. When he is old enough to understand I will tell him.

13amyers

It will be ok. WHen Alyssa was little (she is now 13), told us she was our little dalmation puppy. It was s o cute! To this day she still says that!

DrNiblik

Aimee, you actually saved me a post. I was going to ask the very same thing about my niece. She is just beginning to enter puberty, has a large cafe on her side stretching from her back to just under her left breast. She is aware that she has NF, but I was debating about telling/warning her about how bad it potentially get. She already has the poor vision and muscular coordination as well as signifigant LDs. I don't want to freak her out although she can see for herself what it's done to her mother and me. On the other hand, when the NF started to get really bad in my late teens and early tenties I was plenty pissed that no one told me what was going to happen.

tycensmom

Tycen is 4 1/2. He doesn't know NF is causing his issues, but we are frank with him about each of his issues. Right now it's his leg length discrepancy and his upcoming surgery. When he was younger, he noticed his spots and that's where we left it. He had spots, lots of spots. My husband and I have moles and birthmarks, too, as do my younger kids (who do not have NF). We just explain that everyone is different and most people have some kind of spots, they're just different, just like people are different but the same too.

JaxonsMom

When Jaxon was younger and at "that stage" we debated what to do.

Although it seems totally unrelated, I kept thinking about adoption. When I was a kid, adoption was a taboo subject. It was kept a secret and then dropped on a child, like a bomb. Usually the child was old enough to resent the secret and felt lied to. But now, things are SO much more open. There are beautiful children's books explaining the situation and most kids know from birth. THAT'S how I wanted it to be for Jaxon - a natural thing that is discussed openly. In bits and pieces as it is age appropriate, but never a secret.

Jaxon was pretty addicted to his scrapbook at that age, so I started a separate one for him about NF. (I highly recommend that approach if your child is wired anything like mine. It made him feel special and explained things in terms he could understand.) We also included pictures of one of his buddies with NF. Jaxon and Carter loved their books and carried them to doctor's appointments. The doctors thought the book was a great idea and encouraged us to get it printed to help other families.

I remember those terrible early-diagnosis days when I was just sure our world would collapse. Back then, when I imagined Jaxon's future it was pretty bleak - I honestly thought that NF would eliminate joy from his life. I could not find any information depicting happy, successful children with NF. I told myself that I could have handled all of this mess SO much better if I could have simply seen the smiling faces of happy kids with NF. So, we proceeded. Thanks to NF Inc. California and Gillian Anderson's foundation, the book was printed.

So, this is my long-winded recommendation not to keep NF a secret. It's okay to be discreet about who knows what, but secrets cause resentment and make it difficult to get the support you need. If the child knows, then your family will have the opportunity to participate in camps, walks, symposiums, social events and even the Buddy bear program. He/she can ask questions at the doctor's appointments and through doing so, you can learn of their perspective about NF. It's possible that telling the full truth could cause a few fears, but if you have open communication your child will be in a position to ask questions and turn to you and the medical/support community for reassurance. If it is kept a secret and they find out, I would hate for them to stumble on some of the same information we've bumped into while surfing online!

granny58

HI AMIEE,

MY NAME IS ROSE I HAVE NF ONE MY SELF AND BOTH OF MY BOYS HAVE A LITE CASE OF IT TO. I NOW HAVE A GRANDSON WHO HAS THE BROWN SPOTS ON HIM. AND SADDLY TO SAY HE HAS NF NOW TO. ONE DAY HE WAS ASKING ME WHAT THEY WERE. SO I TOLD HIM IN THE BEST WAY THAT I COULD. AND ASK ME ABOUT THE BUMPS ON MY FACE AND ARMS. I TOLD HIM THAT JESUS MADE ME THIS WAY. AND THAT IT DIDN'T MEAN IT WAS BCAUSE I WAS BAD. THAT IS JUST THE WAY I WAS BORN. I TOLD HIM HIM IT DOESN'T MATTER WHAT YOU LOOK LIKE ON THE OUT SIDE. THAT IT IS WHAT YOU HAVE IN YOUR HEART. THAT COUNTS MOST OF ALL AND I LET HIM KNOW. THAT HE HAS A HEART OF GOLD AND VERY SWEET TO. AND IT IS VERY HARD TO TRY AND EXPLAIN THINGS TO A CHILD. I CAN SURE UNDERSTAND WHERE YOU ARE COMING FROM. FOR I HAD TO FIND A WAY TO EXPLAIN THINGS TO MY OWN SONS TO. I ASK THE LORD TO HELP ME FIND A WAY TO DO IT AND HE DID. AND I AM SURE THAT HE WILL HELP YOU OUT TO WHEN THE TIME IS RIGHT. YOU TAKE CARE AND GOD BLESS YOU ALWAYS.

ROSE
granny58

Southern-Girl409

That was so sweet! YOU ARE A SPECIAL MOMMIE! I have the same conversation with my older kids and their cousins about myself and my 1 year old. Then they feel left out because the want "special spots" too! :>)

Ashlee

THANK YOU FOR SHARING. I HOPE TO SHARE MORE LATER WITH ALL AND GAIN SOME INSIGHT.

aimee121477

(((((((HUGS)))))))) to all of you. You guys are the best! I am so so glad that I found this website!

inmemoryofjoval2007

You said the right thing. As he gets older you can explain more. There is a book for children that talks about NF. I will find it and post it or request me as your friend and I will tell you whee you can get your own. It just came out last year.

momof4boyz

there is a book i found online call My nf buddys its ten usa dollers and i got it through nf inc california.this book is made for youger kids i will find the web address and put it on here for everyone

momof4boyz

okay this is the web page for the Nf buddys book and they have a bear that you can have come stay with your son for one week you will have to read about it i m on the waiting list to have buddy come to my home.www.nfcalifornia.org

suzieq323

I think you did it just fine. When he gets older you can expline it to him in more depth. My little boy is 2 1/2. He will be three next month(august). I still worry about have I'm going to help me cope with having nf when he gets older. I hope I can do just a good a job as you did with your child when he started to notice his spots.

suzanne

seesnow

You did great! I find it's best to answer questions honestly as they ask them. My little guy is 9 going on 10 and he's just now starting to get more bumps - found 3 new ones in the last 3 weeks. It has certainly raised some questions around the house. .....one day at a time....sometimes a moment at a time! That seems to be my motto in life!:)

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