Comment by Cherylnz on October 9, 2008 at 5:12am

Hi Margie,
Sending you both big hugs.
Other peoples comments can be hurtful, they really do not understand how it feels to have Alopecia. Even though its not life threatning, it is life changing until we find our own ways of dealing and coping with the challenges it can bring. Take care
Cheryl

Comment by Debbi Fuller on October 9, 2008 at 7:33pm

Hi Margie,
I've always felt that boys have it even harder than girls in some ways. Girls can wear make-up and wigs look more natural on them as they can wear longer hair and hair with more fullness. Next time someone says something that is so insensitive, don't feel guilty about resenting it. I'd probably tell them that until it happens to them or someone they love, they really can't understand. Yes, of course it's good that he isn't sick. BUT, you both get to grieve over the hair loss. You're entitled.
Debbi

Comment by Cindy on October 10, 2008 at 7:16am

Hi Margie, As a parent I can really relate to your feelings and what you are going through. As we get more accepting the pain and lack of understanding from others gets better. Still, we all have our bad days and emotional ones. i really sorry that your son is having a rough time with this. Together you will pull through and find peace of mind. But, it will take some time. I can hear your pain about picture day. I went through this last year and have Sam's last school picture with hair hanging in the family room. It makes me sad because I never know if she will take a picture like that again. I cried when I got it and I cried to give it to family. This year was our first summer without any hair. That was hard as I had to find ways to make her feel comfortable and beautiful and we did. There was a lot of emotion this summer, but in the end I was happy to get through it and that I found ways to hide the baldness. So, you are not alone. New experiences will be ahead for you as time goes by. But, with your acceptance and as your get more knowledge you will in the end be able to help your son more then anymore. I hope you can find a support group in your area for the both of you to attend. It may help to meet other peers or even grown ups with Alopeica. Hang in there..Cindy

Comment by Nancy Schmelzer on October 10, 2008 at 1:59pm

Hi Margie,
I really understand how you feel. I am so sick of saying,"Of course, I am grateful Lauren doesn't have cancer". It's like the apples and oranges things, this is two different things. This hurts both of us because as parents we would take their hurt in a second and do what ever we could to make it better. I am so glad I have found this support group because I really thought I was going crazy- everyone kept telling me be glad it's not worse. Well, I'm sorry but until you have lost your hair, and possibly eyebrows, etc.... don't tell me it could be worse Reading people's blogs helps me realize our kids will be ok and will have a good life.They have us and all our love. Just hang in there, surround yourself with positive people and keep in touch with all of us. I wish I could do more for you. I am sending you an email hug! Take care-Nancy P.s. how did picture day go? Lauren has to have a retake. She had a headband on with her wig and it went half on her eyes and half pushing her wig up. I was a bit PO'd with the photographer and teacher. Couldn't they see she needed a little adjustment?

Comment by Sharon on October 10, 2008 at 2:41pm

Hi there we too have had those comments and grrrrrrrrrrrrr they are so annoying. I have on occasion asked them how they would feel if all their childs hair fell out practically over night, and yes I know it isn't life threatening thankgod ...... however society and people who make uneducated insensitive comments can cause a child to become depressed which can lead to a life threatening series of events. Those comments usually make them think about what they are saying.

Hang in there your son is lucky to have your support and luv. There are many hurdles to leap on the alopecia road and although it is our children who have it, that doesn't mean it hurts us any less, infact I think we do all the worrying. You are entitled to vent, take heart in the fact that there are others out here who know what you are going thru. Take care sharon

Comment by Margie on October 10, 2008 at 2:43pm

Hi Everyone. Thank you all so much for your support and wonderful words. Just knowing I can have a melt-down every once in a while and have understanding people there for me is invaluable. As for Casey's picture day, in the morning we sang "It's color Casey time" and colored his spots with an eyebrow pencil. We tried to make it fun :) His picture will definately be different from last year but he's beautiful no matter what!!!! Yes, I'm having a happy day. Sometimes I think I'm going crazy.... down one day and up the next :) thanks again.

Comment by Margie on October 11, 2008 at 1:21am

You all are the greatest. I've read some post where people refer to those on this site like family. I'm glad to be here getting to know you! Thanks for all your support. It means so much more than you can imagine. Actually, maybe you can imagine as so many of us are going through the same thing. BIG HUGS TO ALL OF YOU

Comment by Michael on October 12, 2008 at 11:06am

Hi Margie, I'm 20 years old and just thought I'd try an give you some insight as to what your son may be going through. i lost all my hair when I was about 5 or 6 or so. Then I think it came back for a bit and then in grade 3 (about 8 years old) over school break it all fell out again. from then on my eyebrows went...along with my eyelashes. Currently I have some hair but not much.
In my opinion your son will be ok, though he will not want to do some basic things that kids love to do, like swim or play some sports. I felt Ii was limited for soccer after playing it for 7 years, as I was told I couldn't play with a hat, so I disappointingly stopped playing. Things like this he may feel limited in but the limitations are just really a mindset.
Anyways just thought I'd give you some insight as to what it was like for me as a kid growing up.
PS - I did cop some taunting in high school (13-18 yrs old), but was very accepted in primary school (6-12 yrs old), but you just deal as well as you can.
Michael

Comment by Margie on October 12, 2008 at 11:53am

Hi Michael, It is wonderful to hear a man's perspective. I haven't had too much advice from the men (though I guess I never asked yet) and am greatful for your insight. I know Casey will be ok, in fact sometimes I think he's stronger than I am. I think I'm a little bit of a control freak and the fact that I can't make this go away sometimes drives me crazy. I'm his mom and it kills me that I can't make something that hurts my child stop. Casey is actually VERY involved in sports (baseball & soccer) and really excels in them. He's determined to be a San Diego Padre one day (hopefully someday we'll have a team that is worthy of him :) ) Sports are the one thing that he is really getting his inner strenght and confidence from. I do hope that he will be so into the sports that he won't think about the aa. He's an amazing kid who has mostly really up days but the occassional down day sneaks in sometimes for both of us. I'm just greatful I have a wonderful supportive group of people to turn to when I need to vent. Thanks. P.S. If you ever think of any other tips or advise for boys please pass your advice this way :)

Comment by Margie on October 27, 2008 at 6:10pm

Thank you so much. I'm trying to be the best for him and he helps to bring that out in me as well. We've joined as a team on this thing. He's currently having regrowth in all areas but we have keeping our excitment tempered because we understand who unpredictable it is.

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