When sickness strikes...

I haven't blogged in two months. At first it wasn't intentional, I was busy, summer was in full swing and there wasn't much to share. Well, there was a little to share. Hair and eyelash growth!!!! I should have been shouting to the world, I mean this is what we have been waiting for, right?!! Yes!! Of course, but I was terrified to share and to talk about it. I guess I was subconsciously taking the "glass half empty" route but pretending that I believed that the glass was "half full". In reality, I did not want to jinx it. However, in my hesitation, I failed to share with all of you the true joy and excitement that comes with watching your little girls hair grow. I did an injustice with not sharing the positives of it but also the fear. And now, it's too late. As quickly as it sprouted, it left even quicker. I'll get to the, but I do want to relish in the nearly two months of joy we felt as we watched her go from being completely bald to having a head full of "fuzz" (as we called it) and eventually even ending up with some longer, dark pieces of hair in the back! 

We had decided to try a sample steroid cream that was given to us by the initial Dermatologist that we saw. My husband tested it on himself first (secretly, I think he wanted to see if he could sprout some hair as well!!!). When he had no irritation, discomfort, or allergic reaction, we tried it on her. It was a small sample and we used it for less than a week. I kept up with the daily "dose of sunlight" regimen and did not think much of it. Sure enough, though, hair started growing, then eyelashes. It was as if the steroid cream was just enough to jump start the process and then the sunlight and her own body allowed the process to flourish.At night we would lay there and just look at how great It was doing, but the topic of conversation always ended with a discussion of fear. I tried to not think that way, but when you are the parent of a child with Alopecia, the thought is constantly running through your mind.

Sure enough, the day came that it all fell out again. Two weeks ago we spent a night awake fighting 102-104 degree fevers while listening to what we thought was a congested child, but knowing that something just wasn't right. At 6 am the following morning I decided it was time to take action and ignore the advice of our pediatrician who had told us the day before it was "a virus that needed to run its course". I set off to a hospital 45 minutes away from our house and was greeted so kindly at the pediatric ER. While there, they discovered that Taylor had croup AND pneumonia. She was immediately put on IV antibiotics and was given IV steroids and a nebulizer treatment. We spent the day in the hospital and came home and spent a few more days of her not being herself. In the back of my mind the question remained... Would "it" happen? I didn't have to wonder for long. Within days, as her body began fighting off the infection, it also attacked her hair. It literally took only a few days and it was all gone. I feel crushed, despite knowing that it could happen at any moment. Was this going to be what would happen every time she gets sick?! Anytime she has any stressor or trauma?! The answer is unknown for sure, but my gut tells me yes. When sickness strikes in a person with Alopecia, everything is at risk... I thought it would get easier, especially having the knowledge to back it up, but it's only gotten harder. However, this is life... This is our life... This is Alopecia!!!! 

Tangled...

My child is obsessed with the movie Tangled. I don't know if it's a coincidence or not, but the irony in her favorite movie being about a girl with hair so long that people can climb a tower with it, is not lost on my husband and I. It bothered me at first, but I really believed that it was the singing, the animation, the bright colors that captured her attention. My husband, however, really seems affected by this. 


It's been about two months now since she watched the movie for the first time. It is now to the point where EVERY DAY she insists on watching the movie. Obviously, she doesn't walk up to me and say "put that damn Tangled movie on NOW", but she does break through the gate at the top of the steps, walks downstairs (yes, she is now walking down the steps-- lord help me!!), grabs the portable DVD player that she watches it on and brings it to me while making a whining sound if I do not turn it on immediately. And I'm being serious with the events that I just listed above. She literally will find the DVD player everyday and make me turn it on for her. It is the only movie that she will sit and watch for more than five minutes. She literally will sit and watch 30-45 minutes of this movie, a smile on her face the entire time, never blinking or moving. It's actually a wonderful blessing to have 30-45 minutes of uninterrupted "Mommy" time. So, when my husband tried to break this habit yesterday, I was nothing short of annoyed. 


He came home from work (he had worked a 14 hour day) and so she was laying in bed watching the movie (as she does every night before bed). He got on his kick about hoping that she doesn't like the movie because of the hair and then decided he was going to try and find another movie to replace it. He went into Torie's room and scoured her DVD collection and selected two other Pixar movies that he believed would have similar colors, music, etc. Well, about five minutes into each of them she was over it and began running around the house in her normal fashion. Internally, I was smiling because he did not believe me that Tangled was the ONLY movie she would sit and watch. However, at the same time it really did make me wonder if it is good for her to watch. The premise is solely based on a fairy tale about a girl with long, beautiful hair. What impact is that going to have on her future? Is there really a reason she likes the movie so much? What is she going to think when she is older about the fact that "everyone" (exaggeration, but hey, she is a girl) around her has hair including the cartoon character in her favorite movie? I'm not really sure and I don't know whether or not Tangled is her favorite movie because of the hair. I would lean toward thinking that she has NO CLUE about that facet of the movie, but I also didn't think my kid could understand a lot of things she ends up showing me she understands. So, I guess we will wait and see if this obsession lasts and when she's older we will find out what is so fascinating about TANGLED. 

The greatest gift...

A few days ago I received one of the greatest gifts I could have ever imagined. I pulled up to my house and saw an orange box that was labeled "Shutterfly" and audibly wondered what I had gotten from the company. Did I order something and forget? Did my Mom make something for us? Mothers Day had passed by a few weeks prior and so I really could not figure it out. I walked inside, opened the box and saw the cover of the book with the words "Taylor, You are Beautiful!!!". I looked for a card and did not see one and so I did the exact opposite of what most people would think... I set the book down. I love surprises and like to enjoy things when I look at them. When I get something in my possession, I want to take my time when reviewing it. Heck, when Taylor was born I made sure everyone else in the room held her first so that when I finally got to hold her, I could take my time and enjoy the moment without feeling any pressure. THAT is what I wanted to do with this book. I didn't yet know who sent it, nor did I really know what the contents were within the book, but I knew that it would spark emotion and I knew that it was worth waiting to look inside. I had a few quick chores that I wanted to get done to complete my "cleaning Friday" list and so I got to them as swiftly as possible. As I mopped the floor I wondered who would take the time to do something so kind. I figured it was my Mom or my Sister. It had to be... right?! Finally, I checked off the last chore on the list and set off to my room to open the book. Torie was already pestering me about seeing it and I told her I would give it to her WHEN I WAS DONE. I shut my door and sat down and started reading. Within SECONDS I was balling my eyes out. Each page was filled of pictures of my beautiful little girl, followed by personal notes from friends, family, and even a few strangers (to me) who were friends with my siblings. I could not get over their kindness and the heartfelt words on each page. I literally cried through the entire forty four page book. When Nick called me on his way home from work, I told him about it and he became silent. I thought I had been disconnected when he finally said "that's wild... I cannot believe someone would do that for us". When he arrived home I excitedly showed it to him thinking that he would have a stronger reaction. However, one page in he became emotional as well. When he finished the book he walked into the kitchen, tears still in his eyes and our carefree Taylor followed him saying "dada, dada". A smile crossed his face as it did on mine and I know we were thinking the same thing. This little girl who is loved by so many, who is going to face struggles as she ages, has no idea the support system that is behind her. Her future just may be as carefree as it is at 18 months. When she feels down as she ages, she will have this book to look at and realize that she is not alone and that so many people think she is beautiful. A woman, who I went to school with my entire life facilitated this entire thing through Facebook and made this book for our family, for us to know that we are not going through this by ourselves. She set up an avenue for friends and family to share messages and she took the time to put it all together. Someone who was a distant friend did that FOR US. Her generosity means more than she will EVER know as do the comments from each person who contributed to the book. 

That book changed our lives. Friday was the first day that I actually felt hopeful that Taylor's future may not be clouded by feelings of inadequacy. As someone who struggled with insecurity my entire life, I have been fearful since the day of her diagnosis that I would not be the right person to lead her down this journey. Would someone who had a list of 17 cosmetic procedures that she wanted done in NINTH GRADE be the right person to support her daughter in a disease that is based solely on looks?? I did not know and I have struggled to put my "issues" aside to make sure that she does not have a narrow-minded view of beauty. However, in receiving this book, I know that we are not alone. It will not just be my husband and I telling her that she is beautiful. There is an entire book that will be prominently displayed in our house for her whenever she needs reassurance. She is BEAUTIFUL. Not just because of her outward appearance, but because of her personality. Hair or no hair, the notion is becoming less significant with each passing day... 

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...