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... 

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... 

It's a Good Hair Day...

Today was a "good" hair day... not for me as far as my own hair... Heck, anyone who knows me knows that I only have good hair days about eight times a year. That is, the day the hair dresser does it and the day that follows my hair dresser doing my hair. I'm just not good at styling my hair, which is probably another "pro" to add to the bright side that we keep trying to look at in dealing with this whole thing. In all seriousness though, today was a good hair day because none of us got upset about Taylor and her Alopecia. Some days we wake up and it's all one of us or all of us can think about (please try to remember when you're judging that this has only been something that we have been processing for a month). Anyway, today we did not think about it. I talked about it with a family member and I read an article about it, but it didn't HURT today.


 It did not even hit me that I had a great day with her and was not sad until we were in the grocery store. Taylor had been in the car most of the day because we had a ton of errands to run so when I was shopping I decided that we would try letting her walk next to the cart. Well, anyone with a 16 month old can probably relate to their child not wanting to walk NEXT to anything.  She wanted to PUSH THE CART. At first I resisted, but finally I allowed it. I stood back and watched her pushing the cart and just started smiling. I thought to myself "what the hell does it matter that she is not going to have hair... she is beautiful, she is self-sufficient (for her age), she is confident and independent." It just really struck me that I need to embrace this and look at all the amazing things she does every day without hair being a factor. 


Today, she pushed a cart full of groceries.  She BUCKLED HERSELF into the cart. She learned how to get her toy frogs to flip (see video below). She even learned something not so great... Her newest thing is to walk away and say "Gaaa" while audibly SIGHING (which is a direct copy of her sister being mad and walking away saying "God" when she doesn't like what she has been told). While I am not exactly PROUD of this last one because I do not support using the Lords name in vain, my point in sharing it is that she is learning so many things each day and I AM PROUD of her development. We were given such a blessing and the things that she does are not impacted by her hair. Regardless of the stress that our family has endured lately, Taylor is growing into a great little girl. She is becoming her own person and as a parent, I could not ask for anything more. Part of her growth and development is going to be focused on Alopecia, there is no doubt about it, but I am becoming more certain with each passing day that she has the perfect personality to handle the curve ball that has been thrown our way. Despite the evening bath that revealed even more hair loss (as has been the recurring theme for the past two weeks or so), I can say spending time with my little girl, watching these new triumphs and hearing the evil giggle that resulted when she realized she learned something new, made it a GOOD HAIR DAY. 

Support...

If there is one thing that you tend to learn when something in your life becomes less than perfect, it is WHO IS THERE FOR YOU and the power that a good support system has on your wellbeing. As women (and I'm sure men too, but I can only speak for my own kind!!), we like to think that we can handle everything on our own. We shut people out, we put on our superwoman capes and set out to take on the world by ourselves. However, sometimes it becomes necessary to say "I'm not ok" or "I need help". When Taylor (my daughter, for those just joining) was at the point in her hair loss where we pretty much knew it was Alopecia, but it hadn't officially been diagnosed, my first thought was to shut down and handle it on my own. While I wanted people to know so that they understood what the dramatic change in her appearance was from, I did not want people feeling like they needed to "help". I sort of shut everyone out and really didn't want to face it. As I have explained before, I was in total denial. I did not want people to feel sorry for her or us and feel like they had to express that she was "still beautiful" or that "it didn't matter". I was not sure how I felt about it and so I was not ready to hear how others felt about it. As time went on, and she eventually was diagnosed by the Dermatologist, it became evident that I needed a support group. While I was not looking for sympathy, it was definitely nice to know that people were here for us. It was reassuring to hear that people did not think I was selfish for being sad and that they were going to support Taylor no matter what. Even more amazingly, I had people reach out with contacts of other people that had children with the same condition. THAT was an amazing turning point in my outlook of all of this. I reached out to a woman who had a daughter slightly older than Taylor and she has been such a great resource for me. We had several mutual friends on Facebook who were all excited to have the two of us talk. I am so thankful for these people that linked us because I have learned so much from this connection. Since then I have gotten in contact with a few other people who have all been so nice and very willing to share their stories as well as information about doctors, treatments and other avenues of support. I am beyond thankful for this new community of people that are in our lives. I really underestimated the power of a good support system. Never again will I take for granted the blessings that we have of so many people that are willing to be a part of this journey with our family. I am amazed by the people in our lives: our families, our friends, and the strangers who have now become friends because of this. Alopecia is a scary thing. It does not cause physical pain, sickness, or death, but it is still a disease. It is unpredictable and relentless. It is not a journey that I would want to venture on alone and thankfully, it does not look like we will have to...

First visit with the specialist...

Yesterday was Taylors first visit with the Pediatric Dermatologist. Although the first Dermatologist we met with was a very nice man, it was not nearly as positive of an experience as what we encountered yesterday. I can honestly say, the health care provider plays such an integral role in a disease like this and I am thankful that we found someone like Dr. C...

So, at 12:00pm yesterday I rushed out of the door in my typical hectic style. I had my purse on my shoulder, Taylor (my daughter) on my hip, her shoes in one hand and her bottle and sippy cup in my other hand. I "threw" her in the car, put her shoes on her and climbed into the front seat. We drove to her pediatricians office and picked up her blood work, all normal, and then headed to CVS to pick up pictuers. I had about ten photos printed off that documented the hair loss from December until now. I stood in line annoyed because there was one cashier who seemed to be in no rush to check the rest of us out. A random man stood in line behind me and made small talk of which I could not tell you WHAT he was saying. I think my nerves had begun to get the best of me, but I was determined to not lose my cool despite the ten minute wait. Finally I got the pictures and we rushed to the car. I realized I now had exactly an hour to go an hour and eight minutes (My Navi's estimated time... and yes, my navigation system has a name, her name is "Navi"). Luckily, I remembered the speed limit on '97' (route 97? highway 97? I just know it as 97) was 65 mph, so I convinced myself I'd make up that last eight minutes!! I was familiar with Baltimore because I went to college in the area and so I had no concerns that I would make it to Hopkins without trouble. I was correct on all accounts. We made it there in an hour and without any issues. I turned into the parking garage, and a five minute walk later we arrived at the office. As is typical with any specialists office, we spent a decent amount of time waiting. During the wait I pulled out the photographs. I lost my breath as I looked at the first picture. There was my baby... my BEAUTIFUL little girl on her first birthday with a head full of brown (with a red tint) hair. Her eyebrows were the most perfect shape and her thick eyelashes illuminated her crystal blue eyes. I just stared, speechless, thoughtless. I looked over at her as she was running around the exam room. She was still beautiful, but it was painful to compare how different she looked. I tried to shake the feeling and flipped through the rest of the photos. I am with my daughter 24 hours a day, every day and so it wasn't until I really saw photos that I realized how drastic of a change she had undergone. It hurt. But, "life goes on", I reminded myself and I put the pictures in chronological order so that the doctor could see the transition of hair loss. I placed the pictures with the long list detailing our family history of auto immune diseases as well as a list of questions that my husband and I had prepared. I waited patiently watching Taylor destroy the exam room, a normal, healthy 16 month old.

Shortly after, there was a knock at the door and the doctor entered. He shook my daughters 16 month old hand and then introduced himself to her teddy bear and shook the bears hand. After speaking to her for a few seconds (no doubt trying to make her feel comfortable), he shook my hand and introduced himself. We reviewed the family history, her hairloss, the pictures, etc and he said "normally we would run other tests, but given the extensive family history of autoimmune disorders, there is really no question that this is Alopecia". We went on to discuss what that meant for her future and Dr. C relayed to me that her regrowth chances were not great but that he was by no means going to give up trying. The first treatment trial: UV light. That's right, the doctor said to put 50 SPF on her and continue to reapply it as directed and keep her outside all summer. So, it looks like we now have doctors orders to spend the summer at the beach, the pool, the waterpark, the zoo, the park and any other outdoor place we can think of. That is one treatment that I have no problem signing her up for!!!! Many people apparently experience some kind of regrowth from UV light treatment and so I am optimistic as we head into the warmer weather.

September is when we head back to Hopkins for the next appointment. At that point we will assess the effectiveness of the UV light and discuss the possibility of trying Rogaine or other topical steroids creams. I am excited to see if any of these things work, but certainly do not want us to get our hopes up. I asked my daughter what she thought about all of this and she responded "a dada dadada". Driving home from the appointment I turned the music up after making my phone calls to family members. I looked in the rearview mirror and watched her dancing to the music. Fist pumping, to be exact. She had me in hysterics laughing because of how care free she was dancing along to rap songs that she shouldn't be listening to in the first place. She switched from fist pumping, to itsy bitsy spider moves, to "shaking it" (when she gets her whole body going and moves her hips and torso)... All of this in her carseat without being prompted. Heck, at first she didn't even know I was watching her. She just looked at herself in her carseat mirror and moved to the music. She is so care free. She doesn't care or even know that we are going to these appointments because she does not have hair. She is happy, healthy, outgoing, and a born entertainer. Her strength gets me through this...

"When is she going to get some hair?!!"

"When is she 'gonna' get some hair?!!". This question seems to be the topic on every strangers mind. At first, I thought I was just being hypersensitive. Ok, I probably am being sensitive, but seriously... four weeks in a row at the grocery store I have been asked that exact question. I could not make this up. I go weekly (usually the same day every week), and each week a different stranger has asked me about her hair. Even if my daughter didn't have Alopecia, I feel like saying "HOW THE HELL SHOULD I KNOW?!!". I mean really, how can a parent predict exactly when their kid is going to have hair?? The first time it happened, I came home and was really upset. I had gotten used to people asking that over the course of her short life, but after getting the diagnosis of Alopecia, it just hit me differently. I didn't understand why it mattered. I mean seriously, why do strangers care if MY CHILD has hair or not? I guess it's a normal ice breaker, a way to acknowledge that they have noticed my child, but I have found it to be a ridiculous question. The next week when someone asked I responded with "I don't know". I didn't really know what else to say but it didn't ignite the anger in me that it had the week prior when it was so new, and thus saying more than "I don't know" didn't seem important. The third week the lady bagging my groceries took it a step further. I had decided that it was my job to educate and figured if it happened again, I'd be ready. Well, it happened, but this time the lady was so fixated on it that I could not even get the educated, text book speech that I had practiced in my head out of my mouth. She pulled out cell phone pictures of her two year old Granddaughter and talked about how she is "the same way" as my kid and how they call her Granddaughter "Baldy" (Original, huh?!). I let her talk and in my head I was screaming. Especially when she nicknamed my kid "Baldy" as well. If you're going to nickname my kid something, can you at least come up with something clever??!! I left the store and realized that I needed to get used to this. This was going to be our lives for a while, for years, maybe forever. I realized that I needed to start telling people about Alopecia because CLEARLY they have no clue. If you see a 16 month old baby that has no hair, no eyelashes and no eyebrows... it's probable that they could have a disease such as Alopecia. This week when I went and got the same question, I said "I don't know if she will get hair". The other lady standing there commented "Oh, I'm sure she will". This was my opportunity. I responded the best way I knew how... "She has Alopecia, so we do not know if or when she will get hair". The girl who asked me looked mortified and started apologizing profusely. I explained to her that I didn't know anything about the disease prior to my daughters diagnosis and then I explained what the disease was after she asked. I felt better this time that I was given the opportunity to educate someone and maybe prevent another person from being asked the SAME question over and over. I do not know if I am getting used to my daughters diagnosis, if time really does heal all, or if I am just getting used to the predictability of the people around me, but each day seems to be a little easier. The only advice I can offer from here though is STOP ASKING WHEN SOMEBODY'S KID IS GOING TO GET HAIR and also DO NOT ASSUME EVERY PERSON THAT HAS LOST THEIR HAIR HAS CANCER.

Back to the beginning...

When I started this blog two weeks ago, my initial idea was to share my journey FROM THE BEGINNING. After my first post, I got scared. I thought... "why would ANYONE care what my experience with this is as a parent especially given the fact that my kid was only diagnosed a few weeks ago?" "what the heck do I know?" and "who would want to read my narrow, possibly ignorant view of this disease?". However, after some soul searching, I've decided to continue and just do this regardless of the potential backlash. If you're new to this disease, as my family is, then maybe you will find some comfort that someone else is experiencing the same thing you are. At worst, I will probably offend alot of people, at best, I may relate to someone. I am hoping that my blog is taken as a learning experience, a journey that may or may not end. So, in order to offer what I set out to do, I am going to share how Alopecia came into our household.

My daughter turned one in December. Her birthday party was a cupcake theme and she wore an obnoxious tu-tu with a shirt that had a cupcake on it. She then had an outfit change (because no first birthday is complete without two outfits) that consisted of a tu-tu pants outfit and a onesie with a "1" on it. She looked adorable and she went crazy digging into the giant cupcake-cake that we made for her. I remember looking at pictures later that night. My husband and I talked about how dark her hair had gotten and how thick her eyebrows had become. I even made the comment (one that I will regret for the REST OF MY LIFE) that I felt bad because she had my thick eyebrows and "we were going to have to do something about that". My husband kind of looked at me in disgust when I said it. At the time I didn't understand what was wrong with pointing out an <imperfection> in my child. Now... I'd give anything to take back that comment. To date, thinking of saying that brings me to tears. To start, my child was perfect and beautiful with or without thick eyebrows and NOW, now I would give anything for her to have thick eyebrows. Thick eyebrows can be thinned at the appropriate age using tweezers or waxing, but no eyebrows means something entirely different. Anyway, two weeks after her birthday party she went in for tear duct surgery. The surgery went well and finally after a year of eyes that would be stuck shut every morning, her eyes were draining properly. The surgery was flawless. Two weeks or so after the procedure, her hair started to thin. Family started noticing, but we all figured that maybe the stress of the surgery caused it, or maybe it was normal hair shedding that babies go through. I ignored it. Weeks went on and more and more people started commenting. I really began to notice the thinning of her hair as well but refused to believe anything was wrong. I was not about to run to the doctors for a hunch that something could be wrong. Then the eyebrows started to thin and become patchy. This is when I convinced myself that it WAS from the tear duct surgery. Simultaneously, her eyelashes fell out as well and it made perfect sense to me.

When I finally looked at pictures from December and compared them to February pictures, I realized how drastic of a change she had endured. She looked totally different. This little girl that was growing dark hair now had peach fuzz at best, patchy eyebrows and 2-3 eyelashes per eye. I decided it was time to take action and when she went in for her appointment to get her blood drawn, I asked that the doctor add thyroid testing because my Husband, Mother, Grandmother, Mother-in-law, and three Uncles between both of us, have thyroid. To me, if it was anything, it would be thyroid. A few days later the test came back negative. The doctor had recommended that I give her a multi-vitamin and that maybe it was a vitamin-deficiency. It sounded crazy to me, but I complied. A month later, all the eyebrows and eyelashes were gone, there was even less hair and she had been on the vitamins daily. I started researching Alopecia a little more in depth but was still in denial. I called the pediatrician and made an appointment and then made a dermatology appointment for two days later before even telling the doctor what I thought. It was time that I start taking her care in my hands and advocating for her. The pediatrician was still uncertain whether or not she thought it was Alopecia but gave me a referral for the Dermatologist as well as an order for more blood work. All the blood work came back normal, except for a slightly elevated White Blood Cell count. I went to the dermatologist and it took about a minute for her to be diagnosed.

He said "given the strong family history of auto immune disorders (my mother has Rheumatoid Arthritis, my mother-in-law has tested positive in the past for Lupus, Juvenile Diabetes is in our family history, Thyroid is highly prevalent and Vitaligo is also highly prevalent), given the photos that you brought, and looking at the pattern of her hair loss, there is no doubt in my mind that she has Alopecia". I don't know why those words stung so much worse when the doctor said them. I had pretty much come to terms with the fact that it was probably what I would hear from the doctor, but somehow hearing them with my baby girl in my arms, rocked me to my core. MY LITTLE GIRL HAS ALOPECIA. The rest of the visit was a blur but I do remember feeling a blow to my stomach when he told me not to expect it to grow back. He said it very well could, but often treatments are not effective at this age and even if it does grow back, it could fall out again. THAT hurt. I was so thankful that my daughter was only 15 months old because I was given the opportunity to completely break down in the car. Had she been three or older, I would have had to hold it together for her sake, but given her innocence, I was able to lose it. The "why her", "why us", "why, why, why" came blubbering out of my usually cold exterior. I never knew that I could be broken the way I was broken that day. I cried most of the rest of that night between telling my husband, my twelve year old, my family. I just didn't understand...

The next day, however, I woke up and felt better. I looked at my adorable, smiling daughter who didn't have a care in the world. She was happy and bubbly. She was ALIVE, she wasn't sick, she wasn't in pain. I felt ashamed for my reaction the previous day. I felt selfish. How could I allow myself to act like that? There were so many parents burying their children, sitting by their bedside in hospitals as they endured painful Chemo therapy treatments. My child was FINE. I vowed to try to remember those things. I needed to take this head on and deal with it. I needed to be thankful that Alopecia was "the worst" thing that she had.

It's been almost a month since I found out. Most days I remind myself how lucky we are. Some days, though, despite reminding myself of our blessings, I get really sad. Just because my daughter is not sick or in pain does not mean she doesn't have a hard road ahead. There are treatments that will be painful, there will be people that will hurt her with their comments or stares. I've found comfort in knowing that not everyday will be a great day, but it will be a good enough day. We will get through this as a family. Some days I will fail miserably and be selfish and self loathing, but most days I want to share with others what I have learned. Prior to this, I was the person that thought every hairless person had cancer and now I have opened my eyes to the world around me. One month ago, our lives changed and I'd like to think it was for the better... 

It's not JUST hair!!!!

I will never forget the first person telling me "it's JUST hair" after finding out that my daughter had Alopecia. The very thought of being so insensitive at a time like that baffled me. While it was "just hair" and she was otherwise healthy, it angered me that people could not see the images I did of the emotional roller coaster I believed we would take. How could you say it's "just hair". Hair is what often helps to differentiate sex, it's what so many of us spend hundreds if not thousands of dollars on every year to make us seemingly more "beautiful", it's our HAIR. For every person that said that I wanted to tell them to go get a pair of buzz clippers and shave their hair off RIGHT NOW. No warning, no chance to prepare. Just shave your head. Although that is not as sudden as hair loss happens in Alopecia patients, I would imagine that the shock factor is the same. In the last week I have tried to remind myself that hair is not what makes a person and I continually remind myself of the blessings I have.

My daughter, my 15 month old daughter, was diagnosed with this auto immune disease one week ago. In the past week I have already witnessed amazing support coupled with complete ignorance. I am starting this blog to document the journey from the beginning. I do not know all that it will entail, but I do know that I will do anything for my daughter and so I am ready to fight. Fight for acceptance, fight the stares, fight for her to be who she is AND FIGHT FOR A CURE!!!!