Her first realization...

I always thought Taylor would be older when she first realized she did not have hair. Even after today, I'm sure she does not really "get it"... obviously... she is only 18 months!!!! However, she did look for her hair today.

I had the television on this morning and the phone rang, so I muted it. When I hung up from my phone call I pressed the button to turn the volume on again, which got Taylors attention. She resumed playing, occasionally looking up at the TV until the hair commercial came on. I'm not even sure which one it was, Herbal Essences, maybe. Regardless, it had her attention. She stood paralyzed watching the woman flip her hair back and forth, side to side in a manner that I'm pretty sure nobody does. Taylor began to sway in her spot (my child dances to no music all the time, so that did not seem odd). I just watched her though and when the commercial ended she walked directly to the full length mirror and looked at herself and grabbed at her head. She looked back at the TV, maybe trying to make the connection and then stared again at herself while patting her non existent hair. I don't know why, but that was hard to watch. At 18 months she sees it, even if only for a brief moment, she could tell she looked different from the woman on TV.

Some things, I may never get used to...

The unanswered questions...

As a parent, you want everything in your children's lives to be perfect. If it can't be perfect, you at the very least want the answers so that you can prepare them for any adversity they may face. As a true control freak, I lived by that notion. With Torie, I vowed to always be honest with her so that she could make the best decisions in everything she faced. I never wanted her to be surprised or feel blindsided. I expected to be able to raise Taylor the exact same way, but Alopecia is all about the unknowns. THAT is what makes it so difficult. Outsiders don't understand "what's so bad about hair-loss". Despite the obvious, the bad part about this disease is the unpredictability and the unanswered questions. Right now, Taylor has a layer of peach fuzz all over her head, and some peach fuzz on her face and arms. She also has about six eyelashes growing. These hairs have "sprouted" in just under three weeks time. I want to be excited, if nothing else it proves that spending time in the sun has worked, but given the uncertainty that is this disease, I find that we are not really excited with the discovery of hair. Ok, of course I'm excited, but not outwardly so because it is likely to fall out when winter comes, if not before. These are the things I just do not understand, the questions that I want answers to... WHY does it effect one person and not another? Why did it happen to Taylor at age 1, but it does not effect someone else until 6, 7, 17 or 45 years of age? (of course, I am thankful that she will always know this disease rather than become accustomed to having hair and then losing it). Why is there no cure? Why do treatments not yield much success? I hope that in Taylor's lifetime, we are able to have some of these questions answered. I hope that the more people learn about this disease, the more research will result and hopefully the treatments will one day show success and maybe even a cure could result. At the very least, it would be nice for it to not be taboo to see a bald girl. In trying to create a perfect world for my daughter, the best I can do is try to remove the questions of others and educate as many people as I can. Taylor certainly isn't alone in this, there are millions with this disease... And thus I never want her to feel alone. I still have many questions, even "why her?" still crosses my mind on some days. This has been a learning experience and maybe it is meant to teach me that I cannot control the world but I can still create the most perfect environment for my child given the obstacles thrown our way...

"You're Beautiful"...

(I always feel like I should start with a disclaimer for those who do not know me. If you know me, you know that Taylor is the center of my world and receives all the love and attention a child should or could ever want. If you don't know me, please do not mistake my concerns or my opinions as a reflection of a future for my child that will be devoid of the emotional support needed for this disease.)

Last week when my husband put Taylor to bed, I noticed that after he told her "Good night, I love you", he said "You are beautiful". Of course it touched my heart and I recalled hearing him say it at night before but had never really paid much attention. I decided I'd start and sure enough every night before bed when he tells her good night, he tells her she is beautiful. It made me start thinking how much of an influence that will be on her future. It is reasonable, I would think, that she will believe it for many years to come. That statement alone could likely ward off the insecurity demons for some time. But when will that not be enough? Of course my husband and I think she is beautiful. She's ours. However, I wonder how the rest of the world will perceive her. Even yesterday (bet you can't guess where, lol), I was asked whether she was a boy or a girl. To me, it seemed so simple. She was in pink and purple, she has earrings, she has a smile that lights up the room. What about her doesn't look like a girl? I didn't have to ask the question or answer it, because the lady took it upon herself to rub Taylor's bald head and say "I thought you were a girl but wasn't sure because of this" (as she is still rubbing my kids head).

I know beauty goes beyond the surface. If beauty was judged on smiles, personality, or kindness, half of Hollywood would be replaced. But, that is not the world we live in and thus my baby will face those who question her beauty. My husband can tell her every night, I can as well, but at some point it is logical to think that she may not feel the same way we do, especially if she is faced with bullying and the likes of other insecure peers. I don't really have a moral to the story or a message to share. I am pondering these thoughts about her future myself. I do know one thing, when she finds a man who will tell her she is beautiful every night, that will be a man worth pursuing. I just hope she knows her worth as she grows older and I hope that her Dad continues telling her "you're beautiful" for years to come...

False Hope...

Although we are so new with this Alopecia thing, I have already experienced two instances of false hope. To start, it is important to realize that in between the unofficial diagnosis from the pediatrician and the official diagnosis with the specialist (which can sometimes take months), google became my best friend. I spent countless hours looking for a cure for a cureless disease. I think I really believed that if I googled my little heart out, I would stumble across something that nobody else had seen. In doing so, all I really did was set myself up for disappointment. You find yourself clinging to the few "success" stories and really believing that that will be the same for your child. So, while I was endlessly searching one night I heard my twelve year old say "OMG Taylor has an eyebrow growing". While in any "normal" house, this would sound like a weird statement, for me it was the most exciting thing to hear. I jumped up from the computer and ran over to her. Before I could even see her eyebrows (I'll blame the "baby weight" on my slow movement), my 12 year old said, "Oh, never mind. It was just a fuzz". I know it sounds ridiculous, but hearing "it was just a fuzz", really made me angry. Not at Torie (the 12 year old), but at myself, at Alopecia, at everything. I was running across a room because of the possibility of a single hair follicle. REALLY?!! One hair created that much excitement?!! I felt stupid. I felt ridiculous. I shut down the computer because the non stop echoing of Alopecia was beginning to take its toll on my sanity (assuming I had any to begin with!!!!). 


The next time it happened, was about a week and a half ago. It was right before the appointment that helped to change my point of view. I was sitting in Taylor's room, rocking her to sleep for her nap. Yes, I rock her to sleep at nap time... she's spoiled, stop judging : ) Anyway, she had just fallen asleep and I was enjoying the silence of the house. I was looking down at her when I saw an eyelash. It looked to be fairly long and I wondered how I didn't notice it before. I felt my heart start beating faster and I wanted to jump out of the chair. I was sooooooooo excited!!!! I went to touch it as gently as I could when I realized it was not her eyelash, but in fact my own... It fell off her eye lid all too easily. I was crushed inside. Once again, I had let this disease beat me down. That incident set the tone for the entire rest of the day. I know that sounds crazy, but it just made me feel so down. Is that what this is going to be like her whole life???!!!! It didn't seem fair, it didn't seem right. 


After we saw the Pediatric Dermatologist and he gave us the "TRUTH" that we needed to hear, I realized it was time to face what this disease was: never-ending. There may be years where she will have her own hair, but just as quickly as it happened before, it could all be gone. My husband and I sat down this weekend and really talked about Taylor's future with this. We came to the realization that we would be better served to assume she will not ever get hair rather than constantly looking and waiting. Everyday she loses what little bit she has left. Everyday it pains me a little when I go to wash her hair and realize that there is less than the day before. I am fortunate to have not ever witnessed the clumps of hair falling out like other people have seen, but I still can see the change. This summer will be a test of our vow to not be impacted by her hair. Assuming the sunlight has an effect, it is likely that some hair will regrow. We have to be prepared for it to fall out and I do not know what that will feel like to go through the process again. All I can do is HOPE that we handle it better each time... 

This is love...

I should have updated this when it happened, but my 12 year old really required the extent of our attention this weekend and thus blogging about Taylor was not a thought in my mind. I was considering starting a blog about the ins and outs of raising a 12 year old (NOT), but then I realized I needed to FIND a blog on how to raise 12 year olds because clearly I have NO CLUE!!!! Anyway, all is well in our world and thus I am back before the computer sharing my family's life stories as they occur!! 


So, on April 27th which is my brothers birthday, I got a text message late at night (ok, I think it was like 9 pm... but that has become late in my world). It woke me up, I realized that it was not urgent and resigned myself to calling him back in the morning. When I woke up, still in bed, I did what any normal person does... GOT ON FACEBOOK. When I signed on I saw that my brother had tagged photos of me. He is attending law school in Miami so I was quite intrigued as to HOW he could have gotten pictures of me. And then I saw it... HE SHAVED HIS HEAD. I was once again rendered speechless. I could not believe that somebody would do that to support their niece. I felt so thankful, so blessed to have family that is willing to do such a thing. When Taylor feels down about having Alopecia, she will KNOW and SEE the support of her family and friends behind her and I think that makes all the difference. We all so often run from our support systems when we need them the most. I am thankful that our support system has not allowed us to run. We need them!! 


I have attached some of the photos of my brother shaving his head. His act of kindness means more than he probably knows. This is love...