Month: November 2012

All Because One Little Girl Lost Her Hair…

All Because One Little Girl Lost Her Hair…

Today, almost nine years to the day since Jeff spoke to Maddie’s kindergarten class about her alopecia and differences, he spoke to her entire high school student body and faculty about the very same thing.  It was somewhat nostalgic.  His reason for giving the talk was the same as before: Maddie still has never been bullied, but she was feeling like people in high school who she had not met before wondered why she was bald and even assumed she had cancer.  Just like in kindergarten, she asked her dad to intervene and talk to her school, to make sure they all understood that she has alopecia, not cancer.

This time, Jeff also talked about CAP and the families that we are blessed to know and help through CAP.  As pictures of our CAP families and Alopeciapalooza flashed across the screen, Jeff talked about our journey with alopecia and how it led to CAP and Alopeciapalooza.   He explained to the engaged student body and school faculty about how sometimes something we may see as a flaw or a difference in ourselves can lead us to discover new worlds, to find out something about ourselves that we otherwise might not have found–a talent, a skill, even a friendship or group of friends.

Especially at Thanksgiving, I am reminded of the story of Squanto and how his journey led him to help so many.  Did you know that Squanto was kidnapped from his village and spent three years in New England working as a servant?  He was desperate to get back home to his tribe and finally after 10-12 years, Squanto was finally able to begin his journey home.  But when Squanto went to where his village used to be, his family was nowhere to be found. He later learned that a great sickness had struck his people, and everyone had died. He was the last of the Patuxet tribe. Squanto lived with the Wampanoag tribe until he heard that the white men were building a city nearby. The year was 1620 when the Pilgrims arrived.  Squanto taught the Pilgrims how to farm. He taught them how to plant Indian corn and other vegetables. He also taught the women how to cook the corn. Squanto helped Pilgrims to make friends with other Indian tribes.   He was such a great help, William Bradford declared him a special instrument sent from God to help them survive.  If Squanto had not been there to help the Pilgrims, it could be possible that none of them would have survived.  If Squanto had not been kidnapped years earlier, history would have been rewritten.

Sometimes life throws us curve balls.  Difficult situations often seem pointless, and we can’t help but wonder why did this happen to me.  When Maddie was diagnosed with alopecia, Jeff and I certainly wondered why it had to be her.  But sometimes, something wonderful can come from something scary and life-changing.  During the Q & A after Jeff’s talk, a fellow student asked Maddie if she could grow her hair back tomorrow, would she want to.  She answered honestly, “I don’t know” and went on to explain that if it hadn’t been for her alopecia, she never would have met so many friends, been to so many places for Alopeciapalooza, met the Yankees.  And if it wasn’t for Maddie losing her hair in Kindergarten, Jeff would never have founded CAP and started us on this wonderful journey of being able to use our experience to help others.  CAP is a blessing to our family.  We are thankful for each and every one of you who have been put in our path.  We are so grateful to be part of such a wonderful family that we call CAP.

Happy Thanksgiving to our extended CAP Family!

Sincerely,

Betsy and Jeff Woytovich

 

CAP Kids are the Best!

CAP Kids are the Best!

I think the video speaks to why our passion is so great!

It’s not my CAP, it’s our CAP and we all wear it!

Please share this video with everyone you know 
and on every social media site you belong!

http://video214.com/play/TZi3V0cGNMQKkS1IlctsAA/s/dark 
Our Alopecia Journey: From Diagnosis to Acceptance

Our Alopecia Journey: From Diagnosis to Acceptance

My memories of Maddie’s diagnosis are a series of events blurred together like a documentary: First, I am brushing my five-year-old Maddie’s hair, and it is becoming harder and harder to cover her widening part; I flip her part from one side to the other, but either way it is still obvious that her hair is thinning. Fast forward a few days, I make an appointment with a pediatric dermatologist in Hershey and immediately burst into tears on the phone. I am baffled by my emotion. I myself have alopecia areata; I get coin-sized bald spots from time to time, but it’s never been a terribly intrusive condition. Later, I realize this must be what they call mother’s intuition. A few weeks later I take Maddie to see Dr. Miller in Hershey. The nurse gives me pamphlets about alopecia that depict people with absolutely no hair. I am appalled. Why would I need these brochures? Maddie isn’t going to lose all of her hair. In hindsight, it’s as if my intuition knew what my mind could not comprehend: This is going to get a lot worse.

About two months later, Jeff and I take Maddie to see Dr. Miller for the second time. Her hair loss has progressed, and she is now missing over 50 percent of her hair. I will never forget two things Dr. Miller tells us this day. First, he explains that Maddie’s case has gotten progressively worse, and this is not a good sign; she will probably continue to lose more hair. Then he tells us that having both of her parents come to the appointmentis a very good sign; she has supportive parents and we will get her through this.

Jeff always talks about the drive home from Hershey that day. That’s where his memory of this journey begins. We drove for a few minutes in silence unsure of what to say as our five year old, seemingly unaffected, played with toys in the back seat. When Jeff realized I was crying, he, the more emotional of the two of us, had to pull over. Maddie’s future or lack-thereof flashed before our eyes as we wondered whether or not she would have friends, do well in school, fall in love, get married, or to the contrary if she would live with us forever never reaching her full potential. Once we’d shared every negative thought imaginable (whispering of course), Maddie looked up from her toys and asked, “Why are you guys crying?”

I would like to say that from that moment on, we were strong and brave for Maddie’s sake, but it wasn’t until a few weeks later, when I got choked up at a school event, that a friend told me what I needed to hear, “I know you’re upset, and rightfully so. But you really need to suck it up when Maddie is around. You don’t want her to see you cry.” I may not have been ready to hear it at that moment, but that was the best advice anyone has ever given me, and eight years later I replay her voice in my mind sometimes, and even offer her same advice to others with newly diagnosed children.

For weeks Jeff and I had been buying Maddie bandanas, hats, scarves, anything to cover up her baldness. We thought we were doing this for Maddie so she wouldn’t have to deal with the pointing and stares and the comments, but in retrospect, we were also doing it for ourselves. When Maddie had her head covered, we could go on with our lives almost as if everything was fine. Like a band aid, the hats and bandanas covered Maddie’s baldness so we didn’t have to think about it or deal with it.

One night, Maddie’s babysitter told us that Maddie had worn her hat to bed. It wasn’t a particularly cold night, and I began to wonder if we were sending Maddie the wrong signal. Were we making her think that there was something to be embarrassed about, something to hide?

A few days after my friend’s comment, Maddie came home from school with a concern. The next day was the kindergarten’s Thanksgiving play, and Maddie was a Native American Indian. She had to wear an Indian headdress and worried how it would look to wear her usual bandana under her headdress. I was about to say, “Why don’t I call Mrs. O and see if she can switch you to a pilgrim?” when Jeff interjected, “Why don’t you just not wear the bandana?”

I thought he was crazy and insensitive, but feeling the importance of the moment I didn’t interrupt. Maddie didn’t need much persuasion, and when Jeff offered to go into her classroom and talk to the kids about alopecia, Maddie quickly obliged. It was as if she had wanted this all along. The next day Jeff spoke to the kindergarten class, explaining that having alopecia is like having a booboo and that Maddie’s body thinks her hair is a booboo so it mistakenly fights it and causes it to fall out. When Jeff was finished talking and Maddie took off her bandana, the kids were more interested in showing Maddie’s Daddy their booboos than in looking at Maddie’s balding head. The Thanksgiving Play went off without a hitch, Maddie was a Native American Indian, and from that day forward Maddie opted not to wear her bandana to school or anywhere else.

Making the decision to encourage Maddie not to wear her bandana to school that day and to ultimately let her decide how she wanted to handle her increasing baldness changed Maddie’s life forever. Maddie’s baldness is an afterthought, something you tend to forget when in her presence.

Of course as a mom, I continue to worry about her. When Maddie was in third grade, I asked her teacher how she was doing in class, how she was handling everything. She looked at me as if she didn’t know what I was talking about, and when I mentioned alopecia, she said, “I honestly forget she is bald sometimes.”

Today Maddie is a 14 year old girl who just started high school. She is smart, beautiful, popular at school, and most of all she is happy. She plays tennis and dreams of being a fashion designer or stylist some day. Oh, and she is completely bald.

Maddie’s First Day of High School

Maddie’s First Day of High School

I had been thinking and worrying about Maddie’s first day of high school all summer. Heck, I’d been thinking about it for years. Maddie, like her sisters, was fortunate to attend a very small catholic elementary school — grades K through 8. Maddie was diagnosed with alopecia in October of her kindergarten year at Sacred Heart, so the 12 kids that she graduated from eighth grade with did not remember her with hair. I would like to say they were protective of her, but it went deeper than that. They didn’t see any reason to be protective of her–she was just Maddie. Silly, artistic, smart, sometimes clumsy, always friendly Maddie. I got the feeling if Maddie’s classmates were asked what her hair color was, they might hesitate because it barely resonated with them that Maddie was bald.

Maddie’s eighth grade graduation night was surprisingly emotional for Maddie, her Dad, and me. The unspoken thought among the three of us, “Why do we have to leave our safety zone? Everything here is perfect,” caused us all to feel heavy-hearted, nostalgic, even frightened.

It was not as if Maddie was going on to a huge high school. Berks Catholic has about 200 freshman, but going from a class of 12 to a class of 200, from a school of 150 to a school of 750 was a huge jump, especially for a girl with no hair. Maddie had her 12 classmates and a few other students she knew from some of the other feeder schools. She had her older sister, Helena, who is a sophomore, and all of her friends. She joined the tennis team, which was another huge advantage to starting fresh in a new school. Helena and her friends and the girls on the tennis team were very welcoming and encouraging to Maddie as she prepared for her first day at Berks Catholic.

As we approached the school on the first day, Maddie was a little nervous, as any freshman would be. In the car line, she saw that her best friend, Devon, was only a few cars ahead of us. She urged me to “catch up.” We watched Devon disappear into the doors of the school, but felt content knowing she was in there surely waiting for Maddie.

As Maddie got out of the car, I couldn’t help but notice a girl in the car in front of us. She was blatantly staring at Maddie. A freshman herself, she was probably not intentionally staring and was possibly even nervous herself, but she wouldn’t take her eyes off of Maddie. I was flooded with emotion as I watched my summer nightmare unfold before my eyes. For nine years, I dropped Maddie off at a school where she didn’t have to worry about bullies, starers, questions, or comments. How was she going to handle this?

Just as I was about to jump out of my car and take her back to eighth grade where she would be safe and secure, I saw a second girl get out of the same car. It was Lynn, who was also a freshman on the tennis team. I watched her mouth, “Hi Maddie,” and the three girls walked into school together. I choked back my tears and realized that even though my biggest fear had just become a reality, Maddie had been unscathed by it. She hadn’t even noticed the starer, and she was fine. She was going to be fine. She is going to be fine.

A few weeks have passed, and just yesterday Maddie told me that a new friend of hers had passed her a note saying, “I am sorry you have cancer; I am here for you.” Again this is a scenario that I didn’t want Maddie to have to encounter. But once again, Maddie handled it. She explained to the girl that she had alopecia, and, of course, her friend was relieved.

I really think that Maddie is going to be fine.

X