Alopecia World
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Overwhelmed with emotions!
my daughter karahgan has aa, but it's pretty much turning in to totalis, we will be getting her wig at the end of april but i find every day harder and harder as her hairs falls out more! i know this is soo selfish of me to feel this way but i keep asking why, why does it have to be her, why does MY lil girl, my only lil girl have to have this! i get so sick when we go in public bc people stare at her, she is 4 and it's starting to bother as well! i just want to scream it's just hair people, she isnt dying, stop looking! karah doesnt want to wear hats or bandannas, which is fine with me but i just sometimes can not bear the stares we get! im so excited about her wig but im fearfull she wont want to wear it or she will think it's a toy and i know i have to enforce rules and monitor her with her wig! i guess i feel ashamed that i want her to wear her wig bc im tired of people staring at us! the other day she had a mini melt down bc she doesnt like looking diff, as a momma that is soo hard bc no matter what you cant make that bad thing go away thats doing this to her! well anyways if any one has any advice or wisdome i will take it all! thx kristen
Replies to This Discussion
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Permalink Reply by Saida Z. (Ariana's mom) on
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my daughter is the same way, when she is with me she doesn't wear hats or scarf but she does to school because kids have told her it looks ugly, and i feel the same way you do with the stares. I try to look the other way because it doesn't bother her, i don't want to push the hats because i don't want her to think that is something to be ashaimed of. I really don't want Alopecia to stop her from doing things. I have seen adults laughing and looking at her its just crazy to me how people can act like that. I know that this is really difficult to go through but try to ignore it, i think is working for me
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Permalink Reply by Cindy on
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Hi, I can relate to what your going through. My daughter lost her hair when she was 5.5, just as she started Kindergarten. I did not tell many people and she always wore her wig out of the home. I did not want her being treated differently by kids or parents or the public because she had no hair. Lucky for us my daughter thought it was cool to wear a wig and did not mind it too much. There is a grieving process and for me I did not fee I was looking at the same person, yet she is not any different from before. You don't want to lose the visual appearance you see day in and out. Now, most of her hair is back and she has not worn a wig for several months, but still some days I miss the hair she had. You feelings are normal, but we have to be there for our kids. We need to put their feelings ahead of ours. I keep telling myself that she has to be the one to live with and she needs to learn to handle social situations . I am her guide right now. We educated her about her AA and she did a talk to her girl scout troop a few weeks ago and we have kept her enrolled in activities that she loves to keep her self-esteem and confidence up. Just surrounding her around positive people will be a help to you all. I suggest contacting the Children's Alopecia Project. www.childrensalopeciaproject.org. The best thing I could have done for Sam was to find this group. I eventually started support group meetings with their support here in Mass. They can give your daughter a pen pal, help you possibly find a family in your area, support and more. Contact Betsy and registration is free. This summer they will have their second Alopeciapalooza. A conference for the kids. CAP's goal is to build sefl-esteem and confidence for our kids.
Cindy
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Permalink Reply by Jen Deletto on
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Cindy - are you going to Alopeciapalooza this summer? We are going! :)
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Hi Jen, Sorry I am just seeing this now. I am not sure if we are going yet, but we went last year. Have you contacted Betsy yet? I really think all of you will benefit from going. I think you will find it very comforting once you meet other families and children. Cindy
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we have little cards that we got from Children's Alopecia Project...it's a business sized card and it explains AA simply and in understandable terms and then provides the CAP website for more info.
This is so hard as a parent...we see the stares more than the kids do because we are on the same level as the other adults who are guilty of looking.
My daughter loves wearing the little military style hats (Claires, Kohls, Children's place, etc) and she has a selection that she rotates through. Her dr. actually told her she needed to wear a hat while outside b/c she was diagnosed in the dead of winter in the North Eastern part of the US...she never fights me wearing a hat outside.
I've found comfort in the song "You're Beautiful" by Taylor Swift! She's my daughter's favorite singer!
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Permalink Reply by BaldGirlsDoLunch.org on
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When I went from diffuse AA to AT and then AU, there were a few years where I didn't look at photos of myself with my prior pretty hair. Ever. It's a time to be extra gentle with yourself not get hard on yourself because not looking at old photos is a normal, human reaction when suffering a deep loss...whether yours or a child's.
So for parents, too, with everything else that's challenging to deal with, try not to pile on any guilt that you should be "progressing" at a certain rate. Better to keep moving forward, but accept that you have your own rate to evolve through the stages. It's only a problem if you get stuck in a world of secrecy, but it sounds like you're doing the things that will prevent that.
Be kind to yourself most of all.......there's nothing wrong with having the full range of emotions come and go. And they will for a while and gradually it will even out and become easier.
Thea
join our list at www.baldgirlsdolunch.org
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Permalink Reply by Rose Marie' on
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Hi
I hope I will be able to help. My daughter was diagnosed with alopecia at 12 so a little older than your little girl. The thing I think many don't fully understand with this condition is it effects the person with it and their loved ones. It's a maze of interconnection that can be difficult to navigate but not impossible.
As her mum and because of her age you have the most influence on what she does and how she handles this and that's ok. You won't get this wrong because you are trying so hard to get it right. You may make mistakes along the way but just learn from them and communicate your love the whole time to your daughter and this will be ok.
Wig wearing is a very subjective thing and I understand for the very young, that sits squarely on Mum and Dad's shoulders. Talk to everyone here about their experiences and learn how their parents choices effected them. Don't take this on as there only being a wrong or a right way. The truth is your way and your daughters will be the way that works the best for you both. Trust yourself and your experience to do the very best by your daughter. Don't let people's judgements change what you feel is going to help. You know your daughter better than anyone else (I would think :))
I decided with the help of my daughter that a hairpiece was going to work for her. But in saying that I also made very sure that it was never used to hide her alopecia or make it become a secret, that was done by negotiating and communicating what she felt would would work best for her in whatever situaton she was facing. Shame can be transferred to little people very easily and when I've read some of the experiences of the many wonderful people here I have realised that this is sometimes a very difficult journey for families and those with alopecia. One of the things I've always understood was that when and if I made a mistake with my daughter she always felt comfortable to communicate her own needs with both her and I discussing fully anything that we disagreed on. When they are little the buck ends with you - so trust yourself to be ok with the decisions you are making.
With this condition there are always consequences for any decision you make with regards to how you and your daughter choose to present. NO Hair, is always a choice, but you have to fully explain what that will mean and give your daughter the tools to deal with that - many cope incredibly well with this choice. The same for the choice of wearing a hairpiece. Give her the tools that help her deal with this choice. (Hiding isn't the best of options in my opinion). Scaves/Bandanas all great viable choices as long as she has the tools to deal with the questions etc. All these choices don't take away that your daughter has alopecia and that's where the work begins and that's where I fully believe you can help the bad thing go away. :)
If I can be of any help please feel free to contact me.
Rosy
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Permalink Reply by Marte Carlson on
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My daughter is 3.5 and has been totally bald for about a month. I went on the roller coaster of emotions that i am sure all parents have been on. The thing that has helped me the most is to talk about it. Anyone looks at her....I just flat out ask them...."have you heard of Alopecia" of course most say "no" and then I go into her story. She is healthy and happy and a perfect little girl. Of course by the end of the conversation they are just enlightened by my attitude. But just like you said, she is a happy normal 4yr old girl!! One ladies post that I read the other was PERFECTLY worded....."God made a few good heads.....the rest of them he put hair on"!! I think that rocks. I feel the shape of my head and it would NOT be pretty if it was bald!! Its just amazing that the people with this ALL have beautiful heads!!! Smile and make the best of it. We never know how long we will be here!!!!
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I understand exactly what you're going through. My daughter started losing her hair at age 9. Her's has turned to totalis as well, and we are now going through the devastation of eyebrow and eyelash loss. I cant be certain, but sometimes think that if she was affected with the disease at an earlier age, she too would have had the strength your daughter has to just go capless. She still tries to hide her disease under wigs. I have been struggling buying wigs. We have had human hair, and synthetic, lace fronts, and skin tops, mono tops all of which have their down falls. Buying wigs, trying to stick with the same color one month to a different one the next, the price's are horrible. Our insurance wont help or cover. And, people still stare. She's in her first year of high school, and there's always a hateful comment, or tease. If your daughter has the strength to go natural, support her completely. Ask the people who stare if they would like to make a donation to the NAAF! No matter what decision you and your daughter come to, unfortunately people will stare.
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Permalink Reply by Jackie on
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I can imagine how difficult this is for you Kristen & Karaghan; but, PLEASE don't shame your daughter.
By encouraging her to wear a wig or a hat or a bandana (or whatever) to cover her head, you are teaching her - at a very early age - to be ashamed of herself and who she is. THIS IS WHO SHE IS and she may as well get used to it now.
When she is in kindergarten and some kid yanks her hair to get her attention, and then ends up with a wig in his hand, she will be twice as embarrased as you are now. & since wigs (even the really good ones) usually look like wigs, they will spark conversation, rumors and curiosity. She will constantly be questioned about her wig/hair.
Other children will tease her to no end because for kids -- teasing is fun.
I was 12 years old walking through the hallway at school when a girl yanked off my wig and tossed it to a friend of hers across the hall. My wig changed hands roughly 9 times before a teacher got a hold of it and returned it to me. Is this what you want for your daughter?
You need to get over the stares. YOU need to be strong for your daughter.
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I personally think it takes time to get used to the change, its been almost a year since we starated in this journey i don't think thats enough time to get confortable with AA, as parents its very difficult but its going to get easier as time goes by. I had to take a break and stay away from researching Alopecia because i felt that AA was taken over my life, it felt really good to not think about it so much. our little girls are beutiful hair or no hair.
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Permalink Reply by Andrea & Ethan Talamantez on
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oh my goodness! I was reading this and thinking wow I'm not alone! My 6 yr old son Ethan as AA and it's pretty much turning into totalis too.. We get our wig at the end of April too.. He refuses to wear the hats and bandanas.. and wants me to spray his head with this hair color.. He thinks it looks like hair. This breaks my heart! I worry about him constantly and can barely do anything productive while at work. Sometimes I think the AA bothers me more then him and that is where the guilt starts! I over indulge him with the hugs, kisses etc.. He is like "mom I'm ok", but I can't help it.. i feel helpless. He hates to look in mirrors and that kills me. When people stare at us, I want to just go off but I don't because it will make him feel worse! He prays for hair every night and I just pray for acceptance and peace.. I know I wasn't much help to you, but please know that you aren't alone!
Andrea
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