Sunday, January 17, 2010

Heartaches and Alopecia

I have mentioned in previous blogs that my 7 year old daughter has alopecia. You can learn a little about it by clicking here: alopecia. Basically, for those not wanting to click, her body thinks hair is a foreign object or a disease and therefore attacks her hair follicles. She has very sparse hair on her head, no eyelashes, no eyebrows, no hair on her arms, nothing (perhaps one day I will blog a bit more about it). 

Abby first started showing signs when I was 5 months pregnant with Molly and was officially diagnosed when I was 8 months pregnant, she was 4. Talk about emotional. She did ok with it the first time, never really lost all her hair and held on to her eyelashes and eyebrows. Time went on and her hair grew back. Then it all fell out. Every last bit. This is where we are today, other than a few sparse bits on her head. It might grow back and fall out again, it might grow back and never fall out again, or it might never grow back. Cruel disease-not life threatening, just life altering.

She handles it amazingly well. I am so proud of her. Last Summer when she was on swim team she even quit wearing her swim cap, proudly told her teammates about it and spent the rest of the Summer with "Eat My Bubbles" written on her head.

We took her to Alopeciapalooza in Philadelphia just before school started so she could discover she wasn't alone.  I think this helped add to her confidence as well. As even though she had a wig she started school without it. A few weeks later she decided she wanted to wear it so we let her. Hey, I let her dictate what she is comfortable with and what makes her happy.

Fast forward to yesterday. Yesterday she went to a birthday party for our neighbor's daughter and it was at the YMCA. A gymnastics party. Now, Abby takes gymnastics, but at The Little Gym, there they are used to seeing her without her wig, in fact I don't think they've ever seen her WITH it.

She decided to wear the wig to the party and would just "be careful". I was a bit worried but just decided to let it go. I didn't go to the party, which is unusual but for a variety of reasons she rode with my neighbors and my husband picked her up.

When they got home she ran to me, crying her eyes out. Apparently she wanted to do a quick handstand (which she is very good at) and, of course, it fell off. While she was at the party she held up pretty good. She didn't cry, just picked up her wig, put it back on and went on to have a good time. Once she got in the car with her Daddy she just started crying.

I took her to her room, held on to her as tightly as I could and just let her cry. Then I began to explain to her that EVERY kid gets picked on, whether it's their size, shape, the way they speak, the clothes they wear, whatever. This is just her thing. I told her how most kids probably just didn't understand why she didn't have any hair. I explained that no matter what ever happens she always has her family and a "soft place to land" here at home. That we will always be here to love, comfort and support her. I then told her to go take a shower, cry it out as much as she wanted to and then leave it in the shower.

I quickly grabbed my husband and took him out on the porch, away from the kids, and cried my eyes out. I hate this for her. I have mourned putting pony tails in her hair, curling her hair, and placing beautiful ribbons in it.  I sobbed in my husbands shoulder that if my sweet girl wants to do cartwheels and handstands she should be able to do them. In the other shoulder I cried that she won't be able to hang upside down from the monkey bars at school or join her friends in cartwheels on the playground without fear of her wig falling off. I allowed myself a few minutes to just be held by my husband before wiping my tears and coming back inside as if nothing had happend.

When I saw Abby after her shower she had moved on. She was back to being her loving, beautiful, sweet self. Children are so resilient. It amazes me how she handles this card she has been dealt. Don't misunderstand me. I know there are parents that deal with so much worse. I know how to put it in perspective. It is still something with which we have to cope. We have to build her up and keep her confidence up so it doesn't become an issue to her, as much as possible, anyway.

We have a long road before us. Middle school and high school could be tough, but we will start now and just take things one day at a time.


Doc said...

Kids can be tough... I bet your daughter is tougher.

Evil Twin's Wife said...

I can't even imagine how hard this is for her and you. She is beautiful with or without her wig. I think you handled the situation wonderfully. {{{Hugs}}}

Anonymous said...

Mandy, I just want you to know that even though there will be tough times over the years. Abby has what it takes to inspire so many. Last summer when she was on the swim team, I was so touched by her courage. I love her to pieces and think that she has a great personality to overcome the comments that others may express. This is just another hurdle that she will soon be able to deal with. I hope you find comfort in knowing that as an adult, your child touched my life forever with her great courage.
Love, Teresa Searfoss

Mandy said...

You all touch my heart. I am sitting here with tears in my eyes. Thank you for your kind words. Teresa, to know she touched you, well I can't even explain what that means to me. She is a very courageous little girl. Robin White has made similar comments. It all goes back to my belief that everything happens for a reason. I try to hold on to that in the tough times. Thank you all.

Evil Twin's Wife said...

I also wanted to add in, if people would look into Locks of Love, it's a great program to help provide wigs for these children with donated hair.

Will Shealy said...

Mandy, I have to agree with Doc. This has, and will continue, to help make her the strong young woman she's becoming. That she has such a loving family makes her that much stronger. I wish I could have been there for her today. Tell her she can always call her Uncle Will as well if she needs to.

Jay said...

I can't even imagine having to deal with this. You and your daughter have great strength and character to deal with it as well as you have.

Dana said...

Do you ever read a story and think to yourself, "Now that is going to be someone who makes a difference"? I was overcome with that thought as I was reading about your daughter.

I know what it's like to ache for your child when they have to face issues that shouldn't be issues - when you see their heartbreak - but what an inspiration she is!

Darkwulfe said...

Mandy, the strength you and your family and your daughter display is heart warming. I admire you all and especially that little girl. She has a lot of courage and you have a lot to be proud of!

angie mizzell said...

What a beautiful little girl you have. She will eventually become a beautiful teen, a beautiful young woman, and one day, a beautiful old lady. She has a million dollar smile and a gorgeous round head. Eat my bubbles... what a trip. I love this post and felt the emotion behind it... it's so painful to see our kids sad... we don't want them to suffer over anything. But she's perfect, and I applaud you for helping her to see that.

VoteAudrey said...

Abby's a beautiful girl, and I see you in her smile. And from this post, I can tell she's super strong and her confidence won't be shaken by a few ugly words from curious peers. She's an inspiration :)