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Permalink Reply by Angie, Gracie's mom on May 6, 2009 at 6:42pm

Sybil, I too find myself feeling the way you feel. It seems every day my daughters hair is getting thinner. Since she is only 1 people mostly assume she is just younger than she is. But I hold my breath as I go into any situation, whether it be an activity at the community center or a play date, that someone will ask me what is going on, or gasp, fear that their children will catch somthing from her. I have thought about being totally rude to folks who ask, would someone ask an amputee what was wrong w/ them and think its OK, but I think I've realized that this won't help the world understand Alopecia, but talk to me again after I've had to deal w/ an actual person who has no tact. Good luck on Sunday, and I hope you can find the strength to ignore the negativity and focus on the fact that this is a day to cherish moms, and lord knows that moms such as us dealing w/ such an agonizing disease need a day of recognition. Happy mothers day! Angie

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Permalink Reply by Sybil on May 6, 2009 at 7:51pm

HI Angie....
BTW...Olivia's middle name is Grace :}
TO tell you the truth I never would have looked twice at such a young child. The child of a friend of ours didn't get hair until nearly a year and a half!
I know...I just have to expect the worst and hope for the best. When her hair is clean it does not look so bad..lol It's just that she is so active and messy that it get knots and goo in it..
I'll be fine. I spoke to one of my sister's in law yesterday and asked that she tell everyone else to just act as if nothing is wrong. If they feel the need to comment..talk as if you are talking about something else. I have no idea what she understands.
Rock...I know what you mean. So far nobody has said anything nasty. I do not know what the parents in her nursery school have said, if anything...it's great she goes to school at our church and one of her teachers is a personal friend..mom also works there and nobody has an issue.
I guess it's only my fears. It's true, being a parent brings out the bubble wrap.
I doubt people who are *educated* will make an issue out of it..but there is always one idiot who says the wrong thing..I'll just have to quell my urge to strange them. Lord knows we all have been in the situation where we have to extract our feet...
Thank you..I just had to vent...
GAWD I love this place!!!
Sybil

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Permalink Reply by Cindy on May 8, 2009 at 6:52am

HI Sybil.I think the feelings you are having are normal. I went through this same thing when Samantha lost her hair. I bailed out a big family get together because I could not handle all the questions. I was an emotional wreck and did not want the pressure. I still have those moments because Sam wears a wig and I don't tell people. There are things she has missed out doing because of my insecurities, but I make up for it in other ways and she always ends up doing somehow. The best advice I have for you is to enjoy mother's day and try not to let Alopecia spoil your day. Hopefully, others won't ask you about it and if they do just tell them you rather not talk about it today or something. I know I cry when I talk about it, still 2 yrs later. I don't feel like you should have to give an explanation to everyone. Maybe you can put a nice headband or hat on Oliva so her hair loss won't be so visible and little girls looks adorable in hats and headbands anyway. Have a wonderful day! Cindy

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Permalink Reply by Sharon, mom of Jon on May 9, 2009 at 7:41pm

People can be cruel. Nothing you didn't know. When my father-in-law died, his brother who was 85 but still had his witts about him, saw my son and blurted out..."WHAT? he's got the chemotherapy??" My brother-in-law quietly explained that Jon has what Tony has, it runs in the family. I do have to admit that I stress over gatherings where everyone doesn't know about Jon's alopecia. I'm to the point where if anyone was ignorant, and it hasn't happened in a while, I'd have to tell them off and leave. Why should WE feel bad or guilty or that we need to hide anything?

Jon's got some hair growing back again. The GED course is going well. That his hair is growing in for the second time, that's a good thing.

Sharon

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Permalink Reply by Sybil on May 10, 2009 at 7:54am

Yeah well...I expect that at some point too..or a variation. It was a lovely day yesterday. We went to a birthday party with all our friends and I was waiting for someone to say something...nobody did...It was wonderful. Everyone must understand that we are so tired of talking about it and even tho only one person from our group had seen her since this started...they were all caring enough to just let it go. I hope today is more like yesterday.

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