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.
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...
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 '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.
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...
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!!!!
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. 
