Wednesday, January 18, 2012

Make a Wish Barbie and Bald Barbie


Am I still beautiful?
BALD BARBIES AND PRINCESSES
This is a controversy of late.  
Some people think that making a barbie bald, and putting her on the shelves would help girls feel better about themselves after losing their hair due to cancer or things like Alopecia- a real disease, where you have lost your hair. 

On the other hand, some people think it is ridiculous to ruin  a beautiful barbie or princess- role models for their girls.  


To start off, we must go back a few months......before all of us were even aware they were contemplating making a bald barbie....Calli had a barbie given to her.


It was from Make a Wish, a going away gift, and to tell the truth, she felt...um...frustrated, angry, and to be honest confused as to why they gave a 14 year old a Barbie.  Also, that the official Make a Wish Barbie looked like it looked-perfect.  Perfect hair, perfect skin, perfect legs, perfect breasts.


Calli's Make A Wish Barbie

Don't get me wrong, she was thankful for all they had done for her and was humored with the gift, but it struck a chord in her.
Calli has never been the barbie loving, pink princess - type of girl that um..... a lot of girls are.  We never collected Barbies, as some do, and again, she is 14 not 4.  Not to say there are not 14 year old's that love Barbies and collect them, but, well, for Calli she would rather read a great book.

So that night back in November, after the Make a Wish volunteers left, she came out of her room with a scary, mad scientist kind of look, and a pair of scissors.  I got out my camera, because I knew what was coming.  

So, she did an extreme makeover to her Make a Wish Barbie.  I hesitated posting it on the blog then, even though she said that I could. I did not want to offend anyone, people don't understand.

At the time, she was upset and a little crazy in a good way- it was therapy to cut, mangle, burn and remake the Barbie to look how she looked at the time.  It was a way for her to deal with the situation and make it her own.


First she cut off the long, curly, blond locks

Then, she tried to shave her head with her razor! She was really enjoying this

That is SO much better!

Now for the Radiation BURNS(sorry for the naked barbie), and of course the marking tattoos

Calli bears the scars of radiation all down her front and back- and the tattoos are permanent


you cannot see them as well here, but she has terrible stretch marks from the medication they gave her- they are worse than any one I have ever gotten from having children.

pretty Barbie now- sitting on her shelf :)
 So... It was therapy, it was belonging, it was destroying the hype about hair, and skin and beauty.  IT made her feel good, better, joyful.

We are bald, we are still beautiful, and still princesses!
 Two weeks ago, as we were checking in for chemo- we saw this new poster up at CHOP.  We laughed and we were so filled with joy, and reminded of Calli's Make a Wish Barbie that she had- made over!  Someone brought this poster in and most of the little girls, moms and dads, thought is was so appropriate and great.  These princesses, though bald, are still beautiful, and still princesses-


Some parents, however, were upset, one little girl in particular, was angry and did not want her princesses to look like her- bald.


BALD BARBIE
So, there is a mom out there advocating for Mattel to make a bald Barbie, to market it and put it on the shelf, as a way of comforting and making these precious children feel beautiful and like they are normal too.


I'll start off by saying that while some people, women and little girls alike, get wigs to feel normal, look normal, there are others who embrace their baldness in different ways.  Some wear hats, and some moms shave their heads in support, some moms leave their hair for normalcy and comfort to their little girls.

There is no wrong here, there is no right.  Each family, has a huge burden, a huge battle and each way that they cope and deal with it is different.   For one little girl, it may upset her to see her mommy bald, she may want to curl her hands around her mom's hair... for a teen girl, it may give her the confidence and bonding of shaving her mom's head- and feeling like she belongs and is no different. 

We chose, as a family, to embrace baldness.  For months, Calli hid her bald head.  She wore coverings, and scarves, hats and hoodies.  The looks, the stares, the glares, the quizzical faces, and disgusted smirks- we have received them all, from men, women, children, boys girls-   Finally, Calli let us shave our heads in support of her.  From that moment on, she went bald, no longer hiding, but holding her beautiful, bald head higher, she told us she felt like she finally fit in, and felt more accepted.  The people close to us noticed, how much of a change happened in just a day.  She smiled more, put on a little make-up, dressed nicer.  She felt normal, she felt beautiful, she felt accepted and she was not alone anymore.

The elephant in the room, was no longer just an elephant that people tried to ignore or avoid.  People actually resolved within themselves to bring it up, talk about our bald heads, marvel at them.  It became a normal for those around us to see the baldness, look past it, and see the real issue-the beauty of our family, the togetherness, we are fighting as one- united.  

I have never felt as beautiful.  We have never had so many comments from absolute strangers about how beautiful we are.  I am fat, overweight, plus-sized and I feel the most radiant and beautiful I have ever felt since I was pregnant.












So back to Barbie, I Got to thinking that she never really has been all that great of a role model for us gals...  Barbie has never been a great aspiration to look like-I mean, she is perfect, and none of us, I repeat- none of us look like her.

  Some comments I am reading say, "....Barbie is who their daughter always played with that she and the princesses should not look bald, they are not meant to look that way."  Yes, you are so very right....none of us are!  But sometimes life happens and we go bald, we get sick and we take nasty drugs that make us bald.  Cancer, and their protocol of drugs, is not kind on the body- they make you swell, give you terrible purple stretchmarks, make you fat, make you skinny, make you pale and feel anything but beautiful....

So, I found this article online, and this woman made a life sized idea of what Mattel's Barbie would actually look like.  It's kind of sick :)

  So Deborah Dunham, showed us that "If Barbie were an actual woman, she would be 5’9″ tall, have a 39″ bust, an 18″ waist, 33″ hips and a size 3 shoe. She would also weight just 110 pounds and have a BMI of 16.24–statistics that would classify her for anorexia. Because of this, she likely would not menstruate, and she’d have to walk on all fours due to her proportions."


I was so inspired by this picture, that I wrote a poem with the help of Calli...
Get real Barbie
Where is your muffin top?  
Why don't you have a big nose?
Or have your hair sassy, short or cropped?
Why are your toes so straight?
Can't they be crooked like mine?
Why don't you gain some weight?
Where is your receding hairline?

Grab a doughnut, and some cheese...
Get some cellulite, would ya please?
Thicker thighs and smaller bras
Be a pear or an apple... 
Let us see your flaws!

Whether you are skinny,
Or whether you are fat
Short or long hair
Chesty or flat
Curly or straight
Bald or Fuzz

You are precious
And that is Because
You are unique
Dare to be oblique

Whatever size or shape you are
You are beautiful, you are a star!
You are a not a barbie 
and that is just fine
Be lovely on the inside
And you will surely shine!
 - by Lucy and Calli Derstine
January 2012


Perhaps if there was a barbie on the shelf, that was say, bald...It would make it more mainstream- more normal....  If parents would buy out of the norm, bald, black, asian- handicapped- the more you see it, the more normal it becomes.  Not that cancer it is normal, because it is not.   But I mean, it is about being aware- sesitizing yourself, your children that over 46 kids each day are diagnosed with cancer.  Cancer is still the number one disease killer of children.

I mean, our country is all about awareness-right?  I mean, they make handicapped barbies, and we are putting children with down syndrome and in wheel chairs on Target ads- which Target, by the way- I loved that! So, why not?  Why not take a beautiful child, who is bald, and put her on a billboard- and it not be an ad about cancer- but say, just a regular target ad, or toys r us ad?

To sum up it all, I think, as does Calli, that it is encouraging and would be helpful and would raise the normalcy factor...it has the potential to make little girls more aware and comfortable with baldness, should their friends cousins, or classmates lose their hair to chemo, or Alopecia.   They are still beautiful, they are the same person...it is just hair.


On the other end of it, a Barbie, is not a great role model to compare our beauty with.  Our true beauty, as humans, should not be measured by our body size or shape, hair length, skin tone, etc......it should be the inside that counts-

The determination, the courage, the strength and honesty that these children display- humbles me and brings me to tears each day.


Yesterday, I saw so many courageous fighters, all battle worn, all tired, all sick..but they persevere, they move on, they continue to fight and do not give up!  They are the most beautiful children I have ever seen or met.  They all have scars, burns, droopy eyes, "weird faces," bald heads....what is wrong with giving them a little bit of empathy from a doll?  I mean, if it can make them feel better, like they are normal, then why not?


May you see past a face, and right to a heart
May you see past a head, and right into a soul
May you be blind to vanity
And see clearly 
The purity of character standing before you.
Can you see my Calli?
Isn't She beautiful?

Tuesday, January 10, 2012

A poem by Lucy


I painted my nails black today,
When you asked if I'd thought you were supposed to die
Underneath the black
Lies my naked nail
Clinging to your shirt and thigh

Holding you soft
Squeezing so tight
The tears thundered out
My heavings of fight

Do not say that
Don't even think it
Wear my tears around your neck
Like a trinket

The tears streaming round
Your burned neck so bare....
Hold a key in their loosing...
A truth to be shared

Guard every thought
Take captive every word
The enemy is hovering
To kill my little bird

Plunder he may
Mess up and confuse
But my sweets...
He will never
Walk a step in your shoes
But Jesus has won my love,
And He has walked where you are....
So courage! 
Courage!
Hold on tight!
It's not very far....

This is just another set back
A heartache
Another battle to fight

I am here my sweets
I 'll hold you tighter
Can you see my sweets
You were born a fighter

My tears have soaked
The solace of your embrace,
In your arms I've lost all reason
All sense of time and place

The dam is broken wide
You've unsheathed the sword
I've been holding at my side

It is time to step to action
Not give up the fight
It is time get His strength
It is time to get His might

Take no thought my child
Give no heed to those vile words
They're whispered and spoken
By fallen soldiers
They're planted by scheming birds

Only believe
Only believe

This is just a mountain climb
Over and under and 
Pass through the rocks,
Their jagged, raw edges take time

Look up
Look up

Can you see the mountain peak
It is right there my love
Keep going!
Move on!
Though the path is steep

It is near my love,
Courage my sweets ...
Fret not my Calli
Jesus has given you hinds feet.

-Lucy Derstine 1/10/12



Thursday, January 5, 2012

life and more life

Calli is still getting regular physical therapy at CHOP-Bucks county twice a week, and we are now traveling weekly to CHOP for treatments and other therapies. She will be starting equine therapy as soon as we get our schedule figured out.  At first Insurance said they would pay, and now we have realized that while they will pay, the only places that offer it are not providers- the closest one is an hour away, and they have a three year waiting list!   Lord willing, He will provide the therapy.  This therapy helps her with her balance and gait, and strengthens her core in ways that regular PT does not.

Aidan is busy with TaeKwonDO- he goes four times a week!  He is very dedicated, and has been doing patterns and stretching and challenging himself here at home as well.  He got a guitar for Christmas and would like to start lessons on that as soon as I find a good teacher!  We got him a chord book for Christmas, and he is trying to teach himself some chords to start.

Calli and Aidan have not had piano lessons since last May, so now that the dust has settled (so to speak but not really at all- we are just used to it now-lol), they are eager to start again!  So, on the days that we have physical therapy, we will also be traveling to horse therapy once a week and piano once a week.  They are both busy with bell choir as well, and really enjoy the friends and music they make!  Did I mention that we home-school too!  lol.

So, our life is crazy busy, and on top of all of this, we have Mike's mom Linda's needs to balance.  She has moved to The Birches at Arbor Square, for the time being, it is literally 5 miles away, which is nice.  Jeff, Lori and Chris are trying to all lend a hand with appointments, and responsibilities and helping mom out. many hands make light work.

We had a huge shock this week, when we found out results of Linda's  PETSCAN.  Apparently the bone scan done two months ago was wrong, or the cancer spread very quickly.  The cancer is indeed in her right lung and has tripled in size since the last scan, it is also in her left lung now in three spots.  It is also in her ribs, and in all three parts of the spine, it is both of her hips, her iliac crest, her sacrum, and now is on her right femur as well as her left.  To top that off, they see spots in her lymph nodes and her bowel that they think are disease.  This news is an extra punch to the gut.  In reality, I think we are all numb.  Friday is the day that Mike's dad died at 58, from cancer,7 years ago...so this is a hard week as it is.

This all of course, is stressful, sad, and shocking....it stretches us beyond our own capabilities of coping and sanity and we must tap into God, we must be in communication and dependence on Him for all of our strength and energy and endurance.

I cannot HOPE and BELIEVE for the best for Calli, and not hope and believe it for my mother-in-law.  Faith is not conditional, hope is not conditional.

We should be a mess- well I guess some people think that I am a mess.  All this chaos and heartache and cancer and death and sorrow surround us...but I am not moved.  My emotions may heave and ho, and my flesh may cry out in weakness at times...but my hope is not diminished and has not moved.

As we try and meet the needs of our children, and Mike's mom,  we are learning to bend and flex.  Our wants go on the back burner, our schedule gets rearranged- we bend, we flex, as the Lord leads.

God is trying to teach us humility, servant hood, being last, thinking of others as more important....these are all really good lessons for not only me and Mike to learn, but our children...and we do it for God, for you..not for our own selves, or to make ourselves feel better.

When Aidan was in the hospital, Calli stayed home with Mike, and it was the first time we were away from each other since May, she was upset and mad and desired for me to come home and be with her....she learned a lesson, that she needed to put Aidan's needs before her own desires.  She was in wonderful hands, safe and ok with her daddy.

On top of all of this, my daddy is in a bad way physically, and emotionally and he needs a supernatural touch from God.  My heart grieves and mourns over the many years of trauma and turmoil he has gone through.  He needs God's hand to give him rest and peace and healing.

Our children, Calli and Aidan, have a hard time digesting all of this at once....it is a lot.  When I lay my head down at night, exhaustion hits my body, a heaviness sits on my chest.

Yet I will sing.  I will give thanks, and I will praise the Lord in and through this.
"Put on a Garment of Praise for a spirit of heaviness, lift up your voice to God," Isaiah 61-3, the old song also said to "pray in the spirit and with understanding, oh Magnify the Lord."

Please pray for my mother in law, Linda, and my Daddy Matthew.



I cannot help but think of a chapter in the bible lately, preached on so many times..and quoted, sung about...but when I read it, I really think...do people really know what this verse means?   Please read it, ingest it, meditate on it- see what it speaks to you.

2 Corinthians 4

New Living Translation (NLT)

Treasure in Fragile Clay Jars
 1 Therefore, since God in his mercy has given us this new way, we never give up. 2 We reject all shameful deeds and underhanded methods. We don’t try to trick anyone or distort the word of God. We tell the truth before God, and all who are honest know this. 3 If the Good News we preach is hidden behind a veil, it is hidden only from people who are perishing. 4
 5 You see, we don’t go around preaching about ourselves. We preach that Jesus Christ is Lord, and we ourselves are your servants for Jesus’ sake. 6 For God, who said, “Let there be light in the darkness,” has made this light shine in our hearts so we could know the glory of God that is seen in the face of Jesus Christ.
 7 We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves.
 8 We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. 9 We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 10 Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.
 11 Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies. 12 So we live in the face of death, but this has resulted in eternal life for you.
 13 But we continue to preach because we have the same kind of faith the psalmist had when he said, “I believed in God, so I spoke.” 14 We know that God, who raised the Lord Jesus, will also raise us with Jesus and present us to himself together with you. 15 All of this is for your benefit. And as God’s grace reaches more and more people, there will be great thanksgiving, and God will receive more and more glory.
 16 That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. 17 For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! 18 So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.

Monday, January 2, 2012

A new year

Calli and Aidan Winter 2000
THESE ARE THE CHILDREN GOD HAS GIVEN ME, HE HAS BEEN GOOD TO ME.
GENESIS 33:5


I found this picture today, with the scripture taped to it.  Looking back, I wish that I would have kept that scripture at the forefront of my mind.  

So many regrets, mistakes and decisions made...based on emotions.  

God has given me two beautiful children.  The only thing a parent ever desires... truly when their child is born, is that they will be healthy, have 10 fingers and toes, be illness free... live a long life.

Today I am reminded, once again, that life goes by too quickly.  The days... years.... have evaporated before me.  So many days, hours, and moments I have wasted on stupid junk- time wasters.  So much energy I have wasted on trying to change others, and trying to control situations that no one can control, but God.

This time of year, we are all thinking of what we can change for the better...
this year, I want to live simple, focus my energy and attention on my children and my husband- the family God has given to me.  
This year, I want to forgive, and let go, and move on.  

This is my earnest prayer... 
to give control over to God- it is definate
for more patience and gentleness while parenting my children
for love to increase in my heart so I can be a good wife to Mike 
for joy, peace, and trust to envelope my brain and filter out the chaos so that all I can see is beauty
to sing again, even when I don't feel like singing  or when the world tells me there is nothing to sing about
to be humble and admit when I am wrong and to seek peace and pursue it
to listen and stay in the presence of God 
to find strength and contentment that only God can give.

There is much more...so much more, that God needs to change in my heart.  This song, really is what I need to do the most...be still and know that God is God....let Him work, let him speak, let Him control, let Him move, while I stay still.



Thursday, December 22, 2011

TIDINGS OF COMFORT AND JOY

 Aidan came home from the hospital last Friday, and is all better now.  Mike is too!  SO Saturday, we finally got our tree, and then Calli got sick!  She is ok though, and on antibiotics, but feeling very tired and worn out.  I am happy and joyous for not getting sick so that I could care for my family.


These past weeks have been just so busy.  I mean it probably is for everyone, but it just seemed like my phone never stopped ringing.  There were so many chores, and lists of things needing to be done, schoolwork piled waiting to be done,  many things need to be done around here.  It is so easy to get lost in the middle of all of this busyness and chaos....to lose focus and pay attention to the things that really do not matter-is an easy thing to do.   

Calli and Aidan were crying last week, saying it did not seem like Christmas yet.  In reality, it didn't.  Nothing was hung or decorated, we had not shopped or smelled a tree....but I think it was really deeper than that.  This year is so different.  We are and always have been busy, but this year, it is like chaos- all at once-   

Deep in our hearts, we just want everything to be normal- We want our biggest dilemma to be ..."What to get dad?"


Normalcy. 
Ya know? 
Tidings of comfort and joy 
and peace on earth 
and all that stuff.


I felt like Charlie Brown just now...I guess I often do...people can get distracted with the shiny trees and presents and all we really want is a simple little tree that we can sing around with our really big open mouths :)


Funny thing, the other day, I opened my door and there was a Charlie Brown Popcorn Tin on my doorstep.  My mom had dropped it off in the still of the morning, while we were all sleeping.  Thanks Mama.


So we ventured out to get the tree over the weekend, and Aidan picked it out- a simple tree.  We managed to put up a few small decorations that are meaningful and simple.  Aidan made cookies and we had the fireplace on and music playing.  

As we placed each ornament on the tree, we remembered the days and times we made them.  My ornaments took me right back to North Wales Elementary School.... making those clothespin reindeer, the macaroni ornament I made in my second grade class...the card ornaments we made with my mom, and the hearts I sewed with my Aunt Alison, when Calli was a baby....  Then we hung the ornament that was given the year Mike's dad died, and both baby's first Christmas ornaments, our first Christmas together....my children's painted hands- so little, so small, pictures of them through the years are all over the tree, snowmen and angels and wreaths they made for me, bells from choir, and starfish from Calli's trip to Turks and Caicos......each one takes us back to a time and a place....a memory.  

It is not always easy to remember things, I mean... sometimes it brings sorrow and tears.  Memories, good or bad, can do that.  Tears stained my cheek through the night as I thought of beloved friends that are gone, my precious father-in-law, our foster children who we all miss and love so much...family troubles.....I thought of times when Calli and Aidan were so small and the winter nights we have spent together doing this same thing.  I thought of the time Mike picked out a tree that was much larger than our 9 ft ceilings...I thought of our first tree less than 2 ft tall.   My brain unsealed thoughts of turmoil, and conflict....and then, I thought of peace and love.  I cried remembering....all we have gone through, the many years of joy and sorrow and they have all made us who we are.  I am so thankful for my husband and my children, I love them so much.  God is so gracious to let me call them my own, to bless me with such love.




HOPE AND BELIEVE- God our Living Hope

Calli said, "Mom I made the mistletoe last year, this year you have to get the real stuff."

Yes, he is feeling much better! (and he got to pick the tree)


trying to screw in the screws! 

crooked- ugh

Dad took over :)

Butchy LOVES daddy :)


Scotty

Setting up one of two nativity scenes we have


The kids and I made this years ago :)

sugar cookies






all done- now for the star-last year was Aidan's turn, so this year Calli gets to do it.

I LOVE THIS!  Mike was asking her if she wanted him to pick her up to put it on the tree- her face is like- NO! :)

HELP ME MOM!

this is not scripted, it was sweet

except...the top needed to be cut off and we forgot to plug it in..so here we go again!

Mom, really?

again..not scripted totally cute and very Mike and Calli.

lol- she is taller than the tree

got it

happy

content

nutty




she loves me, and I love her, and we still love to cuddle each and every single day

my sweets

pretty

The stockings are hung

I made Mike, Calli and Aidan;s stockings, mine is the stocking I have had as long as I can remember that my Nana made me.




 Merry Christmas 2011


We are comforted and have joy with our simple but complex lives.  We must take the rain along with the sunshine...that is how we grow.    I am so full of HOPE and I BELIEVE in God, in what He came to earth to do.  He came to show us how to be humble, how to be servants,  how to live simply... He came to show us a better way.  


May you find Joy and Peace and comfort and contentment in the simple everyday things of life- 

All I want for Christmas, I already have- God has given me so much, how can I ever complain?  How can I ever ask or want anything more?