Shaved my daughter's head tonight

At her request. I thought she'd want to save the hair, but she didn't. Wasn't much there anyway -- she had more when she was born, I think. It's just so hard to believe -- in the beginning of the summer, she had a full head of hair and bushy eyebrows. Now she's bald and losing the eyebrows too. Anyway, I just had to come somewhere and share where people would understand. I'm just so sad. She cried a little bit, but not too much. She's getting a cold too, so that didn't help her feel any better. And I have to put my poor old dog to sleep this week. Not a good week...

Sorry to be such a downer!

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Permalink Reply by Rose Marie' on October 4, 2012 at 8:01pm

Hi

I have been where you are and can fully empathize with how you are feeling. I have had to shave my daughters head on numerous occasions, but at the beginning it just broke my heart and hers. We did find our way, after it was done she began to feel quite empowered around dealing with her hairloss, so even though this is very difficult it may be a positive step in the long run.

Hugs for you both.

Rosy

Permalink Reply by ChrisM on October 5, 2012 at 2:54am

Hi. So sorry to hear of the place you are in right now. If it helps I decided to shaved all my remaining hair recently and although it was hard and took a little getting used to, I have and it feels so much better. Your daughter sounds strong and I'm certain she will get there with your support.

Permalink Reply by Renée on October 5, 2012 at 9:42am

Hi Ican understand your sadnes both for your daughter and your dog. It gets better. Tell your daughter that she's beatiful no matter what.

Permalink Reply by Cheryl, Co-founder on October 5, 2012 at 1:47pm

Hi Sarah mom, I was 26 when I lost my hair, but I can tell you that my mother's support was paramount in my coming to terms with my alopecia. I recall spending a really hot day at my mothers seasonal trailer campsite, where we know all the neighbors. She looked at me and told me, "take the wig off Cheryl, it is too hot. Don't worry about the neighbors". Her showing me to be myself and not worry about others reinforced that I was indeed normal and had nothing to hide. Something that your daughter needs to know in order to develop into a woman with self- confidence. Her willingness to make the decision to shave the remaining hair and her ability to walk around the house and others without a hairpiece is very positive. She is developing self-acceptance and that is something that you should be proud of. I can also understand her avoiding sites and online support groups like Alopecia World, she is trying to adjust to the reality of her situation. It took me over a year before I would go to a support group and meet others with alopecia. You are doing the right thing for her, you are getting advice from other parents who have been through what you have as well as finding out what would be the best way to encourage and help her. This sets a foundation for a strong character that she can use whether she grows her hair back or not. Sounds like you are on the right track.

Permalink Reply by Michjo57 on October 7, 2012 at 2:18pm

How old is your daughter? when I hear stories like this it makes me so mad that I am having a pity party about myself. God Bless you and your daughter.

Permalink Reply by Sarah's Mom on October 8, 2012 at 2:50am

She just turned 12. It's so hard right now because middle school is the pits anyway for any kid. This just makes it so much harder. But we went today and bought a bunch of new clothes that she's really excited about so I'm hoping she has a good week.

Permalink Reply by Me&myGirl_Aussie on October 9, 2012 at 7:09pm

Hi,hope you and your daughter are ok.

I lost all my hair when I was 12, never got to shave it. My daughter who is 9 has AA, and we shave her head once a week, well actually she does it herself now, she has a vacume fit wig, so it sticks better if she shaves it.

If your daughter ever wants to write/vent to another child, my daughter would love to reply.

Wishing you happiness :)

Permalink Reply by Sarah's Mom on October 10, 2012 at 12:15am

Thanks, Aussie,
I will ask her but right now she is refusing to deal with this. I would love for her to talk to another kid. She had a hard day in school today -- one of her close friends she says was making fun of her eyebrows, which basically fell out this week. She got upset and went to the restroom and claims she threw up. Called her other parent to take her home. I want to go to school and talk to the teachers and kids and she's having a fit about it. I am at a loss here. She doesn't want to go to school anymore but homeschooling is NOT an option. I am trying to get her into counseling. I just find this all so hard to believe it is happening.

What is the vacuum wig like? How does it feel? Does it look more natural? I am going to apply to Locks of Love for her and see if we qualify. It just seems like everything is a long process, and she needs help NOW.

Permalink Reply by Me&myGirl_Aussie on October 10, 2012 at 1:15am

I love the vacuum wig, they are more expensive but custom and comforatable, human hair. I have always had one, and when my daughter lost her hair I did not hesitate getting her one either. She was wearing sinthetic before it was made, and she is so much more happier and confidient with the vacuum wig, cause she knows it won't fall off.

Also look at hatswithhair - online, I got brooke a swimming cap with hair, as she does a lot of swimming and i wanted to look after the vacuum wig due to cost, she is very happy with it too.

In regards to school, I am not telling you what to do, but just my experience.
I lost my hair when I was 12, high school was hell for me, and the teasing etc..... Kids and the unknown is what leads to that...... so when my daughter started loosing her hair, I went to her school talked to her teacher and principle, got letters from Alopeica Australia and re wrote these to Brookes situation for the teachers and students in her pod.
With their help they distributed these to everyone. I had parents email me and say thanks for the information and they sat down with their child to explain what was happening to brooke. Brookes teacher then the next day got brooke up in front of the class for news - in which she spoke and the kids asked questions. As it developed she took in different bandanias and wigs to show her class mates, whilst she was waiting for her custom one. It has all been a positive experience for her- and the complete opposite to what I went through. She even goes to the toilets with a friend at lunch to wipe her head off on the hot days.

I am lucky in the sence that my daugher looks to me for advice because I have delt with it myself (but i still deal with a slight guilt that she inherited it from me).

Will your daughter let you take her to an alopecia group?...

Also this is a great book "If Your Hair Falls Out, Keep Dancing!" by LeslieAnn Butler - who is on this site also, I recommend it.

The positive thing that I see with my daughter is the possibilies are endless in this day and age, and I wish I had the internet and contact I have now, when I was that age :)

Permalink Reply by Sarah's Mom on October 11, 2012 at 11:03am

I found a counselor and she is going to go today. I hope it helps. I saw the NAAF is having some sort of even in the Southern California area in December -- we will go if I have to drag her there! Your daughter is so lucky to have you. And I can't imagine going through this in the days before the Internet. I am going to talk to a couple of her teachers today, but no way will she want all her classmates to know. It would have been different in elementary school. Middle school (6th, 7th, 8th grades here) is just brutal. I keep suggesting she just "come out" and people will be more understanding than trying to hide a secret all the time, which is so tiring. I think it will just take time.

On the vacuum wigs, how long do they last? I really think it would help her feel more secure, but I would have a hard time coming up with several thousand dollars and then it only lasts a couple years. Is it hot and sweaty? Is one company better than any other? I am going to apply to Locks of Love here in the US and see if they will give her one or let me pay a reduced price, but I am not sure if they will. I am waiting for a call back for info.

Permalink Reply by Me&myGirl_Aussie on October 11, 2012 at 6:15pm

Counselor is a great idea, hope that goes well and taking her to the NAAF.

I think "coming out" is better, after months of hell at school for me, I ended up having a day off, and my principle spoke at assembly telling the children what was wrong with me, it was strange to know they all knew, but I did not get anything from anyone again, in fact I seemed to get more understanding - except new kids that came to the school and didn't understand, I then learnt these kids had issues themselves (as it was a boarding school where we used to get a lot of troubled kids whos parents didn't know how to deal with them), and I quickly picked back - I got very strong in the fact that I would even say, you got a problem with bald people? (not recommending this though)

I love my vacuum wig, and thats why I had no hesitation in getting one for Brooke. I use angelwigs here in Australian (which is a freedom wig), I will ask angela, if she knows a contact in your area, and you can email with questions.(where should I say you are over there? private msg if you like).

I take great care of my vacuum wigs, they have lasted me up to 7 years - I do not sleep in them, or swim in them either. I figure you pay so much money I am going to make it last, you can send them in a couple of times for repair, which i have done, and thats costs money too.

I don't find them too hot and sweaty, but I have been wearing them for 20 years so I could be used to it too. Sometimes on a really hot day, if I have done some exercise I need to go to the toilet and wipe my head down, and my daughter says she does that too after sport at school, but no one knows - I have played tennis and netball in these wigs, and never felt insecure.

Have you asked the NAAF, in your area, if there is any other financial support systems?

We don't get a lot of financial support here is Aust, and its hard financialy - and the realisation for me, is with Brooke and Me both having it now, I will never own a home or have the financial savings of others, as my savings go towards hair, but we both feel happy and thats what matters to me.

Permalink Reply by jayden thompson on October 15, 2012 at 7:59pm

Sorry,to hear that.My granddaughter was daignosed with AA at 18 months and now she is 3.She too is completely bald no eyelashes or eyebrows.She is beautiful little girl and very smart.I am concerned as she becomes aware of her baldness,how she will fell about herself.I have already seen that other kids and adults can be mean and I find this very difficult.Has your daughter taken any treatment?Is she old enough for a wig?I would love to hear from you.I really would like to talk to someone who can relate.

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