Grieving a loss of what could have been

My sweet 13 mo old started losing her hair. She was always very small, failure to thrive in fact. Her ped just continued to say she was fine, just a slow grower. I knew otherwise, but few listened. I guess they thought I was a paranoid mom, even though I never had these fears with my son who is almost 4. So when she started losing her hair I tried to look the other way. This worked for about a month, until her grandmother said something. That gave me the kick in the butt to take her to the ped, a new one. She listed to our concerns, ran some blood work, and sure enough she has low iron. Hopefully that was what was causing her loss, though it was in patches not diffuse. So I scoured the internet, looking for an answer other than AA. Of course, I didn't find one. I asked for a derm referral instead of waiting for the iron to take effect, and had to wait 3 more weeks to get in. Of course, the derm took one look at her and said she had AA. I was teary throughout, and the derm said she didn't have pitting of the nails and some regrowth, so though she is young, and that is bad in itself, it wasn't as bad as it could be. The derm actually said she has kids that can't sleep at night because of excema, so at least its not bothering her. OK, I'll go with that, but it will bother her. And, which is better, physical pain or emotional sorrow? I see folks looking, but few say anything. They think because she is small that she just has baby hair loss, and assume that she is younger than she is. They think she is a physical prodigy because she can run and they assume she is just 1 years old!! :) I keep waiting for another mom to freak and think she has ringworm or something contagious, and I fear that this will unglue me.

So I grieve for what is to come. It is ironic that as soon as I went out and bought the cute hair bows, her hair started falling out. I remember friends w/ girls saying that I would have to deal w/ fixing her hair when she was first born--boys you just run your fingers through. Now I'd love to have to deal w/ a squirmy toddler and ponytails. Selfishly, I couldn't wait for my little girl to grow long hair. I know she will have to endure loads of pain from children, and I'm sure it will continue as she becomes an adult, just more covertly I imagine. I fear that the hair loss will change who she was to be as a person. I plan to always be there for her. If no one else in the world can see past it, at least her mom can. And I plan to help my son to never ever ridicule her. At the very least her home can be a caring, accepting place. I saw the MTV true life, and told her grandmother about it. The response from my mom was that it wasn't the same as her situation, and in some respects this is true, she will never not know life w/o Alopecia. She won't have that moment where her hair is unexpectedly falling out (though I have read that as episodes recurr they are viewed similarily to being diagnosed with a terminal illness). However, I believe that was a taste of what is to come for her in the future, and if I think too long or hard about it the rage starts to bubble inside of me. This is not helpful, and I've noticed my tolerance level for my 3 year old is already less, as you try to put the lid on the rage, it oozes out in other places. I need to find a way to put my energy into something more positive, like learning to be the best mom possible to a little girl w/ Alopecia. I am hoping that this site and the strong people on it will be able to help me with this.

Views: 5

Comment by Natalie on May 6, 2009 at 10:38pm
Hi Angie- you seem like a terrific mother and your daughter is so lucky to have you. I can tell you that you will be her emotional stability and backbone for many years, just as my mother has been to me for the last 9 years I have had alopecia. I am very blessed to have such a supportive family, and just as I have gained strength through my own mother's support, so will your daughter, too. I hope that lifts your spirits a little bit- Keep smiling, and take care :)
Cheers,
Natalie
Comment by Susan - Jon's Mum on July 30, 2009 at 8:58am
Hi Angie,
Thank-you for sharing your story.
I am sorry that your beautiful little girl has alopecia. My son, Jon, now 12 has had alopecia since he was 6. My eldest child, a daugther, just turned 21.I have another daughter 19 and son 17. It is very hard to be a mother and have to watch your child struggle through issues that crop up while they are growing up. Even if they don't have alopecia, if they are a sensitive child life can be hard for them.
I must say that Jon having alopecia has made our whole family more tolerant of others and more sensitive to others emotional and physical needs. In a way it has made us all better people. Never once have Jon's siblings paid him out or critised him in any way. Nor have they been jealous or begrudged any extra attention that he has received due to his emotional ups and downs that he has had. When I look at Jon I see a handsome, beautiful boy - I see him for who he is.
Most days I don't even think about the fact that he has alopecia. I remember when I see other's (strangers) reactions to seeing him. I wish at those times that he didn't have it. When he is going through a bad patch, mainly because of how he sees himself, I pray that he is cured.
My husband and I keep from him our anguish and show him that we are here for him and are strong for him when he doesn't feel strong in himself. We are going through a bad patch at the moment, but we will get through it because for him we have to. I only joined Alopecia World today but I am glad I did as I have received alot of support already. I hope you get some peace of mind so as to help you cope.
You have shown that you are a caring and proactive mother by joining and getting support. I know that you will get there.
Comment by Ebasha on October 28, 2009 at 8:30am
Hi,
Thank you for sharing the story, you are a terrific mom and I am sure your support will help her through. I have had FPB since I was 12 or maybe younger, I really don't remember anymore.
No one knew exactly what is it, not even the millions of doctors I visited, I underwent several painful treatment and I resorted to old wives tales, whatever people told me to try I did, I can't begin to tell you how many nights I've spent with my mom rubbing garlic on my head and how much it stung.
Growing up,I still did not know what was wrong with me, and I still struggled to find a cure ... life was not easy, people had no compassion. Girls laughed at me, boys refused to stand with me "the bold girl", very few people were nice, but I also hated the pity.
But I want to tell you that I have grown strong, I wear wigs regularly, but whenver someone asks, I say that I am wearing wigs and I say that I have FPB. I have grown to realize that there is nothing to be ashamed of, and that I should be thankful for losing only my hair. The loss of an eye or an arm would have been much worse.
I want to tell you that your daughter is very lucky to have the support of such a wonderful mom, you have to be strong and learn to accept the AA condition, maybe even love it ... because your belief will reflect on your daughter, she has to grow up believing that there is absolutely nothing wrong with her, believe me, take from someone who has been blamed all her life for losing her hair from everyone around her.
Take care and be strong.

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