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...