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Mom and I do not agree on how to deal with my daughter's alopecia! Am I wrong?
My daughter is only 5 yrs old dealing with this and is in early stages of alopecia. I was secretly hoping it was areata however as of this week her eyebrows n lashes are falling off. I have done all home remedies that has so far allowed her to keep bout 30% of her hair. Still falling off but at a slower rate, i dont know if thats a good or bad thing. My mom had alopecia Universales since she was 15, bak in the 70s wen no one knew about it. She was tortured everyday to a point she moved out of her home town changed her name n lives her life in Jersey. My mom for over 30yrs++ was always embarresd bout it and always kept it a secret. being raised by my mom and being the eldest, i knew she had it cuz she had some awful wigs in the past, but i was waitin til she was comfortable telling me she has it. That day never came only til my daughter was diagnosed with it then she set an afternoon with me to talk about something she is still not comfortable with. She cried just as hard as she probably did 1st day she had it. My mom chooses to keep it a secret, i guess cuz it still bothers her. Up til few weeks ago at a family event everyone was curios about my daughter because you can clearly see the Alopecia appearing. I chose to say it in passing convos, and inform people of what it is. how it happens..My mom was mad explaingin that i put my daughter on the spot and i made my daughter feel bad n singled out. I understand my mother was raised in a place n time where no one knew nothing about it. However now because of the bullying in schools, websites, etc. I chose to have conversations in front of my daughter as if its nothing but only hair. My daughter is 5 and i ask her about her feelings every single day. that day was no different. She said she was having fun, she wasnt upset or had deep feelings about it! Im trying to get my daughter prepared for wen the bullies do come her way with insults and i want her to brush it off with yeah alopecis, but bald n beautiful..is that all you got?! I want her to treat it with the attitude that dr's have for it now...its only hair but you have ur health attitude. Which is true compared to all this cancer kids. So, who do you think is right on approaching the matter of alopecia with the public. this is what i want my daughter to realize and realize now at a young age. The kids who except her with alopecia now will be her friends for life, and those that dont...well god weeded out the bad ones to keep her from arms way. I have come over hundreds of blogs and stories that made me mad, made me cry, n made me laugh. But at the end of the day, with the younger kids that revealed themselves without taking note of the consequences felt free ....of wigs , of hiding under a hat or wig. Im 100% sure as an adult, we would want given the opportunity to relieve ourselves of that added stress. then those that suddenly cut out on you would have done so with some major event in ur life, not just Alopecia, better for you. Those who say no big deal n stick around will, has, n will forever be that good friend you have grown to know.Society, tells us wats beautiful, wats not, wats exceptable, wats perfection. Im starting to realize that in the beginging god meant for us to love ourselves and truly be happy, before we can go out into the world and love someone else. However society has you out there doing things at a younger age, and not allowing you to understand,physically, mentally, emotionally, learn to loving yourself. This is an opportunity to do just that, to hell with anyone else that thinks any different, they dont know any better. Who lives by the "Golden Rule" any more? A small percentage, in the end, its wat you have for urself in this rat race of life. Even wen you think you have it all, guess what? you cant take it with you! Lmao! Suicides are the everyday norm, and i refuse to let some uneducated idiot that doesnt know what alopecia is harass my daughter. So, i figure the best defense for my daughter is with a good "Offense." By keeping her well informed of what she has, and arm her with the best weapon for society that gets kicks off making everyone miserable cuz their miserable, knowledge. I introduced my 5 yr old to a great friend of mine, maude sutherland. She has no hands or feet and this was due to a medication a dr prescribed mistakingly to her as a child. Instead of hiding from the world she confronted it. She attends College, top student, always on Deans list, involved in one too many clubs, president to many organizations. Sit down with her for one day n you realize the world is in ur hands you just have to jump up and take it, forget the whispers in the back round(cuz of self image, really?), and most of all "Self Love," is the armor of choice for this genre, because no one loves themselves anymore and instead of becoming part of the solution to a world wide prblm, they choose to be the statistic! I chose a path for my daugher, to be the "Voice" and not hidden in the bakround stage of life. I hope my mother can understand the decision i made is to protect her from the world. Not hide from it! Reality is "MOM & DAD," wont be their forever to keep you from harm, and in a f&kd world where kids are dying off in clusters, by suicides, cyber bullies, shootings, tornados, etc. "Only the Strong In this world Survive!"
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Comment by Lori Van Decker on June 6, 2013 at 6:23pm
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I agree with wisel. I lived through having alopecia at the same time that your mom did. It was not easy. It took me well over thirty years to get to the point that I really don't care people know (and now I even WANT them to know so I can to educate them). Maybe your mother feels in some way responsible for your child's inheriting the genes. Be kind to your Mom. She is a pioneer in all of this. :)
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Comment by JEANETTE on June 6, 2013 at 10:27pm
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Always kind to mom, and respect her opinion but regarding my daughter I have mine as well. I prefer on "Lets agree to disagree," although mom tries to sway my decision in her direction, I firmly stand by mine!Thank You Lori!
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Comment by Sarah on June 11, 2013 at 4:41pm
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I think it's a very personal path for each person but I applaud your decision in helping her accept who she is and what is happening to her. I feel sorry for your mom having never been able to do the same for herself. How I see your situation is one where mom is giving her daughter the necessary tools needed to get on with her life and cope with what is going on. Allowing her daughter to have a chance at self- acceptance and empowerment. Good Job.
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Comment by Dena on June 12, 2013 at 2:41am
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My daughter was diagnosed at the age of 5. She will be 7 next month and lost all of her hair at the start of this year. I agree that it is important to explain what is happening with your child. Alopecia is very rare and most kids think chemo. You don't want your child to be scared you are keeping something worse from her. Also complete strangers and other kids are going to ask. Better for her to have some answers, so she doesn't feel on the spot. I can honestly say my daughter is more comfortable talking to strangers now because so many people have approached us wanting to know if she has cancer. So applaud you for being honest and wanting to support your daughter. That being said, follow your daughters lead. She might not be comfortable with the new changes. My daughter was doing fine with the spots, but she did like to wear a hat or headbands to cover them. The spots drew a lot of attention and she got sick of the questions. When all of her hair came out she seem to not care so much anymore and was a really happy child. Then her dance recital was coming up. All of the sudden she wanted a wig. I felt a little sad about her asking, but she said she just really liked dressing up and didn't want that to be the focus. I understand because I also get sick sometimes of always talking to strangers about it. Some days it would just be nice to go to the store without the pity looks or the invasive questions from strangers. Sometimes I am just in a hurry and want to get in and out of the store.:) I don't know how many times complete strangers have tried to buy her something or have walked up and tried to hand her money. I just want to scream, "She is perfectly healthly." So we went to the Hair Club for Kids to get her a wig. Guess where the wig sat the night of the recital. On her dresser. She decided it was hot and she just wasn't wanting to fuss with it. She doesn't wear it much, but it is there for those days when she just doesn't want to deal with it or she just wants to play dress up. I think by not putting pressure on her one way or the other she was felt she was in control and she has that option if she is in the mood. I can honestly say this is a good age for this to happen if it has to happen. I don't know if things would be going this well if she was in her teens. Also, the kids have been great to her. She hasn't had a single kid pick on her. I know there are a lot of bully's out there, but we haven't ran into any of them. I think a lot of it has to do with the fact she goes about things and doesn't let it rule her life. I am so proud of her. I agree, give your mom a break. Her reaction isn't right, but she is coming from a different time and place. I remember a friend of mine in the 80's who had Alopecia. She was treated a lot different than my daughter has been treated. We worked together in an office and I remember our boss laying her off because he thought she had a mental disorder. He said no one loses hair like that unless they are unstable. Of course he said something along the lines that the job seemed to be just to stressful for her. She was great at her job and he was just being ignorant. She was a close friend and I know she went through a very dark time when her hair fell out. And she also had no support because there was no internet to find groups or people to help her. We are lucky to be able to connect in this way.
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Comment by fijifrangipani on June 16, 2013 at 11:17pm
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in this day and age there is so much freedom of expression and many females choose to shave their head, tattoo them and their body, get numerous piercings, it seems anything goes. I think you are on the right track though your mum went through a different experience. I can relate as I had alopecia way before internet and sites like this and fabulous support and dissemination of information. Maybe your mum will realise that your daughter is very comfortable with where she is at. It may take a converstation with your mum or finding another adult with alopecia to talk to, but she should understand her approach may be more upsetting to your daughter as by telling her to hide it the message being conveyed is something is wrong, and your mum should understand that yes on an outward level that may be so, but it doesnt extend further. Dont be mad at your mum, she has obviously had a hard time of it herself.
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Comment by Ivan on June 19, 2013 at 10:56am
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Possibly we all worry too much about our children, imagine monsters before they appear, and generally fear the worst. Hang loose, go with the flow, and if and when challenges arise then deal with them. Life cannot be mapped out in advance. Be happy and your daughter will have the best chance. What's going down in Jersey? Utopia? We can't run away from challenges, they follow us and ultimately have to be dealt with.
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Im happy to update you all that my mother found my daughters attitude of confidence amazing, she said she would of never guessed it?! She thought kids would pik on her and they did, 2 children actually, but my mom is amazed that even though my daughter has the choice of putting on the wig wen she chooses too. They few months after she went to school for the school pictures, I thought she would want her wig, Instead I have my child approach me with...why are you brushing out my wig? I replied its picture day didn't you want to put your wig on? she replied..."No?...didn't you say Im still beautiful even without the wig?"...I said "Ofcourse you are!" Then tells me well, im taking my class picture without the wig!! I gave her a huge hug and plenty of kisses for looking in the mirror and seeing her beauty in all its Glory!! Gotta love that attitude of hers! My mom was like awww she didn't wear it? I said yes, and told her what she has said ..my mom was very proud of me.
She realized without the support of parents, or family, its easy to loose yourself into depression!!~My mom finds it amazing after my daughter was on stage for about 3 shows in school..how much more confident she was than everyone else. By the end of the year, every parent was asking me on tips to get their babies from being shy and more of a stage , confident attitude!! Gotta Love It!
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