Wednesday, October 12, 2011

I AM NOT MY HAIR

Does anyone remember the musical hair???  

Check out these lyrics- please read thru them if you can stand it.....
Give me a head with hair, long beautiful hair
Shining, gleaming, streaming, flaxen, waxen
Give me down to there, hair, shoulder length or longer
Hair, flow it, show it
Long as God can grow, my hair
Let it fly in the breeze and get caught in the trees
Give a home to the fleas, in my hair
A home for fleas, a hive for the buzzing bees
A nest for birds, there ain't no words
For the beauty, splendor, the wonder of my hair
I want long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen
Knotted, polka dotted, twisted, beaded, braided
Powered, flowered and confettied
Bangled, tangled, spangled and spaghettied
They'll be ga-ga at the go-go, when they see me in my toga
My toga made of blond, brilliantined, biblical hair
My hair like Jesus wore it, Hallelujah I adore it
Hallelujah Mary loved her son, why don't my mother love me?

What's with hair anyway?
 There you go!  So some people put a lot of weight on hair, There are so many more songs out there about hair too.  My husband always told me that if and when I cut my hair short, he would divorce me.  Of course he was not being serious, but he was trying to tell me that he HATED short hair.  I did cut my hair very short- and I will say that was the worst year of our marriage :)

high school 1993 a sophomore at North Penn Senior high, I was so sick of people putting so much emphasis on other's hair...so I cut mine short the summer before school started- I mean pixie cut short.  It looked really cute.  

First day of school- two seniors called me "Chemo."  The thing is, at 15 years old, I did not even know what that word meant.  "Chemo," was my nickname for two months.  I was made fun of so badly and haggled so much, that I decided to leave school and home schooled myself for the rest of that year. 

The following year, I came back, and now my hair was a bit longer...I went to a basketball game, and one of the guys I was sitting next to, told me, "Now let your hair grow out, don't ever do that again."  I guess they told me....I did not cut it again...well at least not for a year :)

Rebellion
The thing is, I rebelled...but in a good way.  I rebelled against what the norm was, what was expected, what was comfortable.  My life was such a mess anyway, and my concerns were not on boyfriends, or the mall, clothes...make-up or grades-like all the other kids at school....I could care less what people thought of me then, so I rebelled against their protocol and I walked my own path, and I cut my hair.

I AM MY HAIR -really?
Last week, I was beginning to get that rebellious feeling again, but in a good way..against society our society today, not in the 70's with the hair song, but now- Lady Gaga, wrote a song- that seriously makes me sad.  I mean, I get what she is saying about her wanting to be unique by living vicariously through her hair and not have people make fun...but really??? Here are some of the lyrics- it just proves my point...it a weird but different way that people are too focused on hair, their hair, our hair....


I just wanna be myself

And I want you to love me for who I am.
I just wanna be myself,
And I want you to know, I am my hair.

I've had enough, this is my prayer,
That I'll die living just as free as my hair.
I've had enough, I'm not a freak,
I just keep fightin' to stay cool on these streets
I'm as free as my hair.
I am my hair.



So she IS her hair.  she says it like 50 million times in the song.  I disagree- I think she hides behind her hair.  (All you Lady Gaga lovers out there- don't be haters of me, just try to see what my point is- or don't)

I am that mom that would go bald
When Calli got cancer and was losing her hair, I knew I would shave my head.  Wouldn't you?  Maybe not, probably not.  Why?  Ask yourself why.  Seriously ask yourself.  I told Calli I was going to and she said no.  What?  Why not?  You can't be bald alone!  Calli would not let me, did not want me to- it was her battle, her war, her loss...she owned it, and she wanted to look at me and see normal.  Two weeks ago, she looked at me and said, "When I look at you, I am reminded of what my hair looked like."  

DAILY REMINDERS
When she posted the poem she wrote yesterday, my heart was ripped inside out.
It was very hard for her, after her hair was gone....she struggled and still struggles to feel beautiful.  For years and years the first thing anyone said to her was "You have the most beautiful hair."  You are so pretty, your hair is so curly etc....all things were about her hair, not her personality, not her spirit.  

I thought, to a degree, that she had become comfortable with being bald, after all she lets me post pics of her on here, and rarely, will venture out without a hat, or a scarf. 

Yesterday something changed
She looked at me, and told me that she was beginning to resent my hair.  It was providence, it had to be, I was also resenting my hair, Each morning I woke and felt extremely vain washing it and watching as my tendrils curled.  I began having dreams about shaving my head, over and over again dreams came at night and I was shaving my head.  It was funny, because she keeps having dreams about having long beautiful hair again.

So last night, she asked me...  I wholeheartedly said yes.  
She asked Mike, he agreed....
and even Aidan joined in....
while she shaved our heads.  
It was a wonderful bonding experience.

You may disagree, but frankly we don't care anymore. We had really good reasons....

CALLI- our precious sweets- you are not alone, you are not the only one that is bald in our home.  Walk tall, take off your hat and be free, you are not the oddball- we ALL ARE!!!   
Calli stepped out today without a hat, or a scarf and was so beautiful and confident- her grandmother even said she sounded more chipper on the phone :)  It was however a very cold rainy day, so tomorrow we may wear a warm cozy hat!


SOCIETY- WE ARE NOT OUR HAIR!!!!!  We are human beings with spirits and personalities and yes some of us live that through our hair, or clothing, but it should not be the focus!  The focus should be the person.  There are kids that will not look at Calli.  How do you think that makes her feel?  People stare at her all of the time, and I know they are curious, but I just want to stick my tongue out at them sometimes, but I smile and pray a blessing over them instead.  So now they can stare at me :)


AWARENESS- I had so many people acknowledge today, all strangers - they looked at my head, looked at my gold & gray ribbons, and then at Calli who was confident and bald today- (yeah!)and they knew- they are now aware- a child has cancer.   

September was Childhood cancer awareness month...how many gold ribbons did you see in stores?  Did you do a 5k, or pick up a yogurt or cereal box with a gold ribbon on it?  I want to make people aware of the battle our children are facing and that more funding, and more research must go to childhood cancers along with the others that we are most  aware of.  Calli  said  that she never knew kids could get cancer until she was diagnosed.   

Speaking of Childhood Cancer awareness month- THANK YOU THANK YOU THANK YOU  to the prayer group of women at Franconia Church- you know who you are, The Office workers at I.T. Landes & Son, Susan & Ali Landes, Ellen Nulf, Laura Kozdra, Alison Dittmar & Jadwega Healy for making so many bags for the parents and children at CHOP.  Thank you for stepping up!  We delivered over 200 bags in the month of September!!!

I made a nice video of our hair shaving party to this song :) 

-called I AM NOT MY HAIR- by India Arie and Pink helps her sing it too :)  We think it should be played as much if not more than Lady Gaga's song- it sends a good message-
























































17 comments:

  1. Oh my word Lucy! What an amazing, loving thing to do for your Callie! You guys look so much alike now I thought that was her in the last picture but it was you!

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  2. I check this post everyday. I don't have cancer but I have lost many friends to it. I know who you all are and have grown to love you deeply. Even sent some things over that I hoped would comfort & encourage you. But the fact is that I am blessed every time I check in. Gave the BLOG address to others because I think that they have to see the faith here. No one thinks that there are not times of tears & discouragement but you are getting stronger. I think somewhere down deep you all knew you would cut your hair and you are blessed to all be in such agreement. How wonderful that Calli knew that the love in her family would make it work. Wonderful video. Thank you so much for sharing. (I disabled my google identity because I am not your "grandma" but the way I share your story, you would think I was.) Folks down here in Florida are still praying for you and asking about you. :)

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  3. I check your blog every day to see updates on Calli and your family. I think it is AMAZING that your whole family shaved your heads in support of her feelings. I just think that is awesome!

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  4. This is AWESOME!! The love of your family and the JOY you posess shine through!!! God bless!

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  5. You are an amazing family...thanks again for sharing an amazing part of your journey. God bless ALL of you.

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  6. Dear Derstine family~
    Perhaps this is the most profound update yet. I love the words that you've written to preface the awesome video- such a lesson to us all.
    I had to laugh- especially at Aidan's facial expressions- priceless! But in the end, it is a story of the heart, not the hair. <3

    I think you are all beautiful teachers of life. So thanks for sharing and showing us what childhood cancer is all about- once more.

    Like you said, "she looked at my bald head, the gold and gray ribbon, and then at Calli and it made sense..." [or something to that effect]
    Adult learners- eh, we all need visuals! :P

    oh, love the 'hair' movie, your song choice, Pink and of course, Telli Savalis should be given credit for "bald is beautiful" (are you even old enough to know who he is? haha)

    It's all good Lucy. :) I Love you all.

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  7. You are all beautiful ... even more so now that you don't have hair hiding your inner beauty! Prayers for strength and healing.

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  8. Janelle RittenhouseOctober 13, 2011 at 9:48 PM

    Calli, you are beautiful, your strength shows through your eyes and in everything you do. Lucy, I knew you would do this, just like you said and you are just as beautiful without hair as with (those boys didn't know beauty when they saw it!) :) By the way, we have some warm crocheted hats coming your way. :)

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  9. Lucy...I had this thought last week "I am surprised that Lucy has not shaved her head yet"...so this is no surprise to me! Calli is so blessed that you are her mom. I loved Aidans expressions. Such a boy! Such a brother! Thank you for sharing! Love you! Amy

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  10. Now you all stick out like a bald head!
    Hahaha!!!

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  11. I read a book where the EXACT same thing happened; A little boy got cancer and his friends and family all shaved their heads for him. I thought that was just SO sweet, even though it was just in a book. I'm really proud of you all for shaving you heads for Calli, you look GREAT! You are such a testimony to your faith, all of you.
    Love and prayers,
    Lydia <333

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  12. Yup bald is beautiful and noting to be ashamed of at all. I know. I could care less that is what God wants me to be and I will. Stay strong gang and F I G H T!!!!!!!

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  13. Wow! So much that you are doing and sharing...it's a wonderful boost to my day to see what the Derstine's are doing. Love the hair post...fab.

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  14. I felt the same way when I shaved my hair at the young age of 23, liberated. I was wondering when you were going to shave your heads as I knew it was just a matter of time. Your video brought tears to my eyes and joy to my heart.

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  15. Such a loving family you all are amazing people.........

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  16. Your family amazes me! You are such an inspiration to me. Since I heard about Calli through my daughter Lucianna, and after meeting both Lucy and Calli at HUP, you became very special to me. We are battling this disease together, and through faith and prayers we are more than conquerors. God is good!

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  17. You look EXACTLY like the kids. Holy Cow! : )
    You are so beautiful.
    So, so beautiful.
    You are a great Mother.
    A great person.
    Thank you.

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