Questions from strangers

[gunter158]

I have a hard time sometimes with how people approch me and Riley when we're in public. For example: Me and Riley were at a resturaunt eating breakfest, and I noticed this one lady staring, wich is nothing new, well on her way out she stops by our table and asks, "Did he get into the worms? Did he get worms?" UGH! at this point I really wanted to just pick riley up and put him in her face and say, "Yes! and he contagouis too!"  But of course I didn't, I just smiled and explained. But I constantly get, did he fall in an ant bed? has he been burned? does he have measles? Chicken Pox? what's on his face? Did he fall down? SOOO....Please how do yall cope and handle the comments/questions?

[bellasmom870]

I just smile and try to be as nice as I can be even though I sometimes get really aggravated with how some people approach us. When Bella was a baby I would explain masto in detail but now I just say she has mastocytosis which isn't contagious, there isn't a lot known about it but hopefully she'll outgrow it. Most people ask more questions so then I'll go into more detail. I haven't really gotten a lot of questions about it. I was once asked if she had fifths disease and an other time  we were at a flea market and Bella was having a little meltdown so her face and arms were really blotchy and red and my grandmother heard two women saying I needed to learn to put sunblock on my daughter. That was the one time that I got really upset because I'd rather people ask me about it then stare or talk about my daughter loud enough for everyone to hear. She'll be three next month and I might put her in preschool, so I know we'll get a lot more questions from parents and other kids.

[gunter158]

I totally agree, i'd rather peaple ask then assume things. I get a lot of elderly peaple give me old remedies for eczema and dry skin. I appreciate their concern but they usually get a little werry when I tell them he has Mastocytosis, and I know its only because they don't understand it.

[del_bug]

We have gotten the stares and whispering behind your back too.  I sometimes feel like people think that I have abused my daughter!  I want to make up some sort of booklet on mastocytosis and maybe even have cards, like business cards, to give out and then say here ya go...do some research before you judge!  It's hard to keep your cool at times but I commend all of us for doing so!!!  :)  I know that some people mean well and it's sweet at times.  I don't know about preschool or even school.  Candice has some autistic tendencies, she was tested for speech but will be going back in June or July to get evaluated again.  She may be starting thearpy for that through the school system here.  That scares me as well.  I will want everyone involved as informed about mastocytosis, and all of her triggers and needs!  It's scary and not all masto kids are the same or have the same triggers or needs.  So it's hard for people to be informed when it's individually different.

Ok I rambled on enough here! LOL  Got to get my kiddo to school!!

 

[fire_of_indy]

my ds is six months old and i have had to deal with a few diffrent ppl down right accuse me of letting bugs eat him alive. And all i could say was i am sorry but he was born with the spots. Thankfull yesterday we finely found out what it is