Friday, July 22, 2011

little bees and boulder rocks


Calli is all done her BRAIN radiation, and just at the right moment when her head was getting so burnt!  She is still getting full neck and spine radiation until the first week of August, but her time bolted down on that table is cut from 45 minutes to 10!!!  WOOOOOO WOOOOO!!!!!!  She is so happy :)  She gets to ring the big bell at PENN soon enough!  We hear it ring each day, and I well up with tears, so happy for those people. things worked out with her ZOFRAN issue.  Calli insisted that I post that it was NOT the insurance Co. that was wrong, but Walmart Pharmacy......rather, the pharmacist communicated wrong information to us.  He told us that the insurance co would NOT pay for any more pills.  Rather- he declared that they will not pay at all  for any more pills and he insisted that I must call the insurance co to figure out why.....He left out that they would pay for them in four more days.  OYE.  Either he was confused, busy or tired, possibly all of the above, but that is some important info to pass along to me! 

So, I called Mr. Insurance guy today, and said....

"Apparently, Wal-mart called me last night and let me know that they goofed on their info to please assure me that you are indeed going to cover this rx for her, right?
and He said 
"Well, yes they did...sort of.  We will only allow so many pills per month, and Calli exceeds that amount, so really we are not approving that amount for the month....but if you can get a letter faxed by her doctor stating that it is medically necessary for her condition, than I will allow it." 
Sure thing.

Is there an EASY button?  Wow.  He was nice.  I am sorry, Insurance companies, are not the devil, but they are a multi-billion dollar industry...and like to cut costs.  

BUT you know what else he said to me,  
"It is good that you spoke up to us, please, we will always deny things, that is just policy, but give us a call, and we will always try and work with you to get you what you need."  

Ok, I will!  :)  SO, I am glad that I called also.  Calli is always putting a check in my spirit, she knows the lengths that I will go to, to defend what is best for her.  IT is like this....if you see a burning building, you do not have to go in and try and save anyone, it is probably best that you stay out and let the firemen do their job...but when it is your child, nothing can stop you from rushing into the flames to get them out into the oxygen rich air.

Calli....has always been that angel on my shoulder telling me the right things to do.  She has this wisdom in her that is beyond me, and beyond her years.  She reminds me of times when I must fess up, quiet down, forgive...let go.

After we got home from treatment today, Calli laid down for a rest inside, and I wanted to enjoy the heat outside.  Everyone is complaining how hot it is, but when you are stuck in A/C all day, it is actually quite refreshing to feel the scorching sun on your face.  Sometimes the heat rising from the ground, lowering from the sky and closing in around you like an oven feels good. I know...I am strange...I have always know this :)

So, I got in the pool today, all was refreshing, and soothing.  I began to think about things, as I always do when I am alone.  It is kind of dangerous, it is like throwing a huge boulder into a deep clear river...things begin to surface that were sunk down to the bottom, and the water becomes cloudy and it gets hard to see clearly.  

I began to weep and weep uncontrollably in the pool, as I thought about my precious Callahan, always giving me the right advice, always speaking up to me and her dad, but in a good way to keep us accountable.  Being bold, telling others to do the right things, not to prove that she is right, but to help others. 

At that moment of weeping, I saw a bee fly in and manage to trap itself in the pool.  He was frantically trying and striving to free himself from the pool.  He just wanted a drink on this hot day and got stuck.  I feel like that bee sometimes, not knowing how to get myself out of a pool that I did not mean to get stuck in. 

I cried...a lot and helped the little guy out.  Did you ever try to trace your thought process back?  Like, try to figure out how you began thinking about something....the line back to the original thought...yeah...that is kind of consuming also.  Like unnecessary overload.  I am logical, and deep and often think too much.

I realized, that I cannot let myself get to those moments, they trap me, and wrestle me down a chasm that I don't want to go or think about.  It is not denial, it is negative, lies, & poison.  

Today, as Calli and I were traveling back from radiation, we were listening to KYW, and the reporter said that there was new medical evidence that positive thinking lengthens your life, and makes your days seem less stressful. Calli looked at me, and said,

"Mom, that is SO true!  People who are negative, get sad and depressed don't want to get up and do anything, and enjoy their life."

One of my very favorite passages of scripture has always been Philippians 4:4-9.  Years ago, I memorized it.  It is truth...KYW even said so, not that that matters at all, ha ha, 
 Rejoice in the Lord always; again I will say, rejoice! 5 Let your gentle spirit be known to all men. The Lord is near. 6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. 8 Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. 9 The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.
Truly, God's words of wisdom are popping up all over the world.  My cousin has a tattoo that I saw yesterday and it says" It has to end to begin."  She got it from a song from one of her favorite artists, but truly... deeply I saw the Hand of God on her foot...reminding me, again that in springs forth.  Without death, we cannot have life, without life, there is no death....

I am not speaking in terms of just physical death, like the poisonous death that they are running through Calli's body, killing her bring life....or of my marigold plant that dies each Fall, and leaves its seeds.  They lay dead all winter in the ground and are not ever supposed to come back...ever....but in the Spring, those seeds bring new huge hardy marigolds to my yard.  How about the death of a chicken, that gives me life as I eat it........but more than that......A death of what I thought tomorrow would bring, the plans I make, the flesh I so love to nurture, a death of my words, my thoughts,  a death of me....brings growth, new thoughts, new moment at a time.  It is a good thing.

Thursday, July 21, 2011

Bold as a Lion

This week has been so very busy!  Monday we had three- YES three doctor appointments, and radiation on top of that!  Calli and I went by ourselves, but it was a good day.  Her oncologist could not believe how well she has been doing.  She is walking stronger each week, so she decreased the steroid that is poofing her face out a bit.  She has maintained her weight, and her blood levels area ll exceptional, well, except her platelets which are pretty low- but that is normal -so they tell us :)

We had to postpone her rehab until the end of radiation, as our schedule was already booked, so really she has not had any at all, since she left the hospital, except for what Mike and I are doing with her here at home.  We saw the PT Rehab doctor as well on Monday, and he has not seen her since she was discharged.  Despite not having any physical therapy since then, she has gotten stronger!  He said that he thinks she will need minimal physical therapy, just to help her balance and her gait get straight.  He actually said, "You do not look like an oncology patient."  Ha!  He then took her down the hall to watch her walk, and the nurse, a stranger to us, says to me as she is tearing up, " She is really something, I just am amazed at her strength, I mean, she is on chemo, and radiation,and she is so strong...she is special."  Yes she is, we already know this.  God is sustaining her through it all.

  So the thing about radiation builds up in your system.  Effects not seen the first few weeks are rising up right now.  Last week, she had such bad burns on her skin, behind her ears, her forehead etc....  So during the weekend when she has off time, it usually will turn tan, and not stay red, but this week it got redder!  I asked the radiation Oncologist on Monday if they strengthened the dose, and he replied, "No, Welcome to radiation, it has built up in her system and she will get worse, not better, radiation continues to build up and then presents it's effects much later."  OK, think Chernobyl, Hiroshima,, OYE.  I mean I KNEW all of this, but, well, I don't think about it least I can't think about it everyday.

So, she has these horrible slits behind her ears- I mean, it is as if I took a straight razor and slit the crevice between her ear and her head.  Both ears have slits in them, they are so painful.  I thought, my gosh it looks like athlete's foot, but on her ear, could she have athlete's ear?  Sounds funny, but it hurts.

I asked the radiation oncologist, and again he said, "This is from us, the radiation cut her skin, it will not get better, it will get worse."  He proceeded to give me a bottle of aquaphor with lidocane in it.  "Keep it moist, maybe it will help, but not likely."

Well jeez man, love your optimism!  So we went home and lathered her up really well, got worse.  What is Aquaphor anyway?  Petroleum Jelly- what?

So imagine that you go to the beach, lather yourself in some Vaseline and get burned, then lather yourself up after, and get burned the next day, and the next and the next.  Vaseline may keep it moist, but my logical brain and the temperature of Calli's skin tells me it is also keeping in the heat!!!  LORD HELP ME!  HELP ME THINK!  What can help her?  They warned us not to put anything on her, or it could cause more burning....  what?  You mean like the Vaseline you told me to put on her, and that I cannot wipe off, and as I am wiping it off it is hurting her????  Not to mention the lidocaine is not numbing her but burning her and stinging the skin!  This does not make any sense to me at all.  I need to pray and think and remember what I use for burns...what do I have?

I have Pot Marigold oil- Calendula, I have two bottles I just bought two months ago, knowing I probably will use it over the summer on Aidan.  It is healing for burns, inflammation, cuts scrapes, bug bites etc!  The photochemical in calendula oppose fungi, bacteria, viruses, and inflammation. They also excite white blood cells in the immune system to fight microbial invaders with a little more vigor!

I have Lavender oil-I wear it almost daily. Lavender has antiseptic and anti-inflammatory properties. It was used in hospitals during World War I to disinfect floors and walls. The Romans, used to bathe in it and believed that is restored and rejuvenated their skin.
It soothes and heals inflammation and burns, bug bites and skin eruptions or wounds, it repels bugs and bacteria!  I never get bitten by those noseeums, because I always have lavender on!

I have Tea Tree oil, which I KNOW has proven to be antiviral, antibacterial, anti fungal, and it is also an antiseptic!  It is know to cool and calm burns and cuts and wounds It has been proven to be active against staph infection and MRSA!  It gets rid of lice, bugs, yeast, shingles, chicken pox, and ACNE!!!

OK, so I took copious amounts of the previous, and mixed it with Burt's bees Aloe & Buttermilk lotion, and Also CANUS Marigold body butter- two things I use a lot of and are whole milk based-and here we are, my homemade mix, I went against their rules, and I am lathering her up 4 or 5 times a day, before radiation, after radiation, when we get home, after her shower, before bed etc...and in only 3 days.....
it is COOLING her skin,
NUMBING her pain, 
HEALING the cuts behind her ears,
and the leathery purplish-red burnt skin is turning brownish-red instead!

Can you see the big tongue sticking out of my mouth???  I mean really????

I went in and told the doctor what I did and guess what he said?  "Well, if it works, then use it!"

IT is times like this when I need to go with my gut, it is OK to buck the system - so to speak- of what has always been done, or used.  I am not one to sit back easy and do what I am told anyway.  I am no doctor, or herbalist, but I know when something is just not working. It is a striving, a struggle that comes so easy- but it is a good one, one with smiles and inquiry, and searching what is pure and right and true.  What have I got to loose?

So the insurance company decides to stop paying for her ZOFRAN, says it is too expensive.  This is the anti-emetic, ya know the medicine that takes away her nausea, and makes her not throw-up.  Really???

SO...being who I am- I called them today and informed them that
1)  some person sitting in a suit behind a desk, WILL NOT make that decision for my daughter.  No SIR!
2) You WILL NOT tell me no
3) you will not say that my daughter gets to throw up and be sick and suffer because you are unwilling to spend the money that we have been paying into your company for the last 14 years of her life and have never abused or over-used!
4) You will approve this medicine and you WILL pay for it!!!

I no longer care, (not that I ever really did), what people think of me.  I would rather be remembered as the lioness mother who fought for her daughter's rights, and health, that constant irritation drip that is reminder her to drink, eat and move.....I would rather be her... that mom, that everyone is intimidated by...than be the passive - give-in and let everyone else walk all over us, and decide for us.

My mother is constantly reminding me that "Christians yield Lucy."  Yes mother, they do, to the WILL OF GOD, not the will of man.  People have always told me to hold back, quiet down, don't speak up so much, let them walk all over you, lie down and run over you.....that is what Christians are supposed to do.  Really, last time I checked Christians are not called to be doormats, and the righteous are as bold as a lion!  Yes, Yes, I know, you get more flies with honey, but I can be bold, and nice at the same time.  Wise as a serpent, but harmless as a dove.

Why did God make me this way then?  HE made me, formed me, my very personality, every inch of who I am, (not my sins, not my failure), but my boldness, my voice, the ache that has been inside of me since a child to do right,and good and see justice prevail...that is from HIM.

So, I don't worry, I be HAPPY, and I pray and then if I feel the urge I SPEAK!  I am learning temperance.  A wonderful spiritual father to me,  told me once, that I cannot be like Barbaro the horse, and bust thru the gate before it opens, then I become dog food ;p

God is gonna work everything out for us....sometimes He gives us the bullhorn to get the job done.

I stepped off of my soapbox now :)

THIS IS WHO I AM FIGHTING FOR!  She is precious, a GEM!  She and I have so much fun and laugh so hard at each other and most moments when we are crying, we end up laughing! 

 good song!

Saturday, July 16, 2011


Our Family Celebrated yesterday, as Aidan was promoted to a yellow belt in TaeKwon-Do!  Aidan has worked so hard the last few weeks, going four times each week with Mike.  Even when we were not home for almost three weeks, our mother-in-law faithfully took him 3 times each week just so he could be promoted in time. 

This week, He went to TKD day camp for 30 hours, AND went again 4 times at night for his weekly class!  That is dedication, over 34 hours of TKD!!!  Mike was happy to take him at night, and I was able to drop him off each morning before our trip to the city; while my mother-in-law picked him up for us each day. 

We are so very proud of Aidan!  We are also so very thankful for the patient, kind and respectful instructors at Mark Cashatt's TaeKwon-Do School in Souderton.  Master Cashatt, has been very understanding, accommodating, and such a wonderful example of patience, kindness and peace in our lives.  Each instructor, takes their time and is so patient with all of the kids-and especially with Aidan. 

Mike has been faithfully taking Aidan since February, at least 3 or 4 nights a week.  Aidan loves it, and is so strong, and motivated to continue and persevere. 

He is growing up so fast, where or where has my little man gone???  This has not been an easy time for Aidan.  He has has so much heartache and sorrow in his young life, and I am just knowing and believing that this is all teaching him, and making him stronger.  Enjoy the pics and the song- is one of his new favorites- It is a group called GRITS-
getting ready, straightening his belt and dobuk
PEP TALK From Mr. Illingworth

Charyot! Salute the Flag. Kyung-niet!

They all Tul together

Kicks, and pattern testing

Chon-Ji- Test Pattern

White Belts must do a snap kick & break a board, to become a yellow belt

A White belt must answer test questions to be promoted

YEah Aidan!!!- You earned your new belt!

Respectful bows and handshakes

Straightening his new belt

He is looking at it :)

Master Cashatt and Aidan

Poppy, Nana, Mom, Aidan, Calli, Grandmom, Dad in Back


Nana and Aidan

Poppy and Aidan

Aidan and Grandmom

Do I have to hug Sissy mom?

My life be like
Ooh Aah (yeah), Ooh Ooh
My life be like (yeah)
Ooh Aah, Ooh Aah (yeah), Ooh Ooh
Ooh Aah (yeah), Ooh Ooh
My life be like (yeah)
Ooh Aah, Ooh Aah (yeah), Ooh Ooh
My life be like (yeah)

It's times like these that make me say
Lord if you see me please come my way
Leavin' bread crumbs for when I stray
Rely on sacrifice and the price you paid
Feel me like a fingertip (fa-finger tip, fa-finger tip)
Sometimes I fall I slip
My heartfelt desire be more like you
Tryin' not to quench your fire with the things I do

I'm on an island by my lonesome stranded
Low key and stayin' candid
Reflect on all the things I try my hand at
Church for the equations to persuasions I'm used to
Finding comfort in the zones of closet bones I get loose to
A mountainous fontaine
Spinnin' and monsoonin', grinnin' it's high octane
Explosive how I came
Rollin' down hills cause lifes a hastle
Encircled by my folly like a moat surround a castle
Stay afloat, catch a second wind
Is the air I breathe
Teary eyed nose runnin' wipe the snot on my sleeve
I'm callin' on the Savior to be all that I need
Please forgive me my behavior had me lost at light speed

It's times like these that make me say
Lord if you see me please come my way
Leavin' bread crumbs for when I stray
Rely on sacrifice and the price you paid
Feel me like a fingertip (fa-finger tip, fa-finger tip)
Sometimes I fall I slip
My heartfelt desire be more like you
Tryin' not to quench your fire with the things I do

The fear of never fallin' in love
And the tears after losin' the feelings of what you thought love was
Like the dirt still up under the rug (My life be like)
Bad characteristics covered in Christs blood
The joy of new birth and the pain of growin' up
The bliss between givin' my all and givin' up
The highs and lows
Paths and roads I chose
In the cold I froze
Tryin' to ease my woes
In this world of sin
Clothes to thin to fend
So to God I send
Words of help to win
In grumblings so deep letters could never express
So the sound of Ooh Aah beneath my breath projects

It's times like these that make me say
Lord if you see me please come my way
Leavin' bread crumbs for when I stray
Rely on sacrifice and the price you paid
Feel me like a fingertip (fa-finger tip, fa-finger tip)
Sometimes I fall I slip
My heartfelt desire be more like you
Tryin' not to quench your fire with the things I do

My life be like
Ooh Aah Ooh
Dum dum ditty
Here come that boy from the Capital City
Last up on the Grits new ditty
But eight bars or the truth well do (uh)
I believe theres a bride thats  stunnin
And I believe in the Kindgom Comming
I believe if you seek the truth
You don't need to look far cause it's gonna find you
So why oh why do I trip and stumble?
And ooh aah as commitment crumbles?
I can't believe that I'm here again....

It's times like these that make me say
Lord if you see me please come my way
Leavin' bread crumbs for when I stray
Rely on sacrifice and the price you paid
Feel me like a fingertip (fa-finger tip, fa-finger tip)
Sometimes I fall I slip
My heartfelt desire be more like you
Tryin' not to quench your fire with the things I do
It's times like these that make me say
Lord if you see me please come my way
Leavin' bread crumbs for when I stray
Rely on sacrifice and the price you paid
Feel me like a fingertip (fa-finger tip, fa-finger tip)
Sometimes I fall I slip
My heartfelt desire be more like you
Tryin' not to quench your fire with the things I do

Fa-finger tip, fa-finger tip
Fa-finger tip, fa-finger tip
My life be like
Fa-finger tip, fa-finger tip
Fa-finger tip, fa-finger tip
Ma-ma-my life be like
Fa-finger tip, fa-finger tip
Fa-finger tip, fa-finger tip
My life be like
Fa-finger tip, fa-finger tip
Fa-finger tip, fa-finger tip
My life be like

Friday, July 15, 2011

I will not forget you

Calli awoke to this song yesterday morning,  She feels that this  was the Lord, telling her in His own way, that in this song, she is Israel.  The video, is about Israel, but the words, the music really spoke to her.

Isaiah 49- 
by Misty Edwards

Can a woman forget her child
And have not compassion on the son of her womb?
Surely they may forget
But I will not forget you
No, I Will not forget you

Sing all you heaven, be joyful all the Earth
Break out in singing ah, you mountains
The Lord has comforted his people
And He will have mercy on his afflicted
He will have mercy on his afflicted

Though Zion has said "I've been forsaken"
Zion has said "I've been forgotten"
Zion has said "I've been forsaken"
Zion has said "I've been forgotten"

Can a woman forget her child
And have not compassion on the son of her womb?
Surely they may forget
But I will not forget you, my people
No, I will not forget you, oh Israel
I will not forget you!

See, I have inscribed you on the palm of My hands
Your walls are ever before Me
See, I have inscribed you on the palm of My hands
Your walls are ever before Me

And in that day you will no longer say
"Blessed be the Lord, our God who brought us from Egypt"
And in that day you will no longer say
"Blessed be the Lord, our God who parted the Red Sea"
For though I scattered, you I will gather you
Though I surround you with the nations
Can the axe boast against it's maker?
Why do the nations rage?
Vanity, vanity, ah vanities!

For in that day you will no longer say
"Blessed be the Lord, our God who parted the Red Sea"
Those who survive will find grace in the wilderness
To look upon the one who you have pierced

And in that day you will no longer say
"Blessed be the Lord, our God who parted the Red Sea"
For in that day you will say:
"Blessed be Yeshua HaMashiach"
For in that day my foot will stay upon the mount called olives
And the mount will split in two.
And there shall be a holy procession to Jerusalem
He has set free the captives and those condemned to die

Hosanna, hosanna, hosanna
Hosanna, hosanna, hosanna
King of kings and Lord of lords
Blessed is He who comes in the name of the Lord!
It shall came to pass!

Monday, July 11, 2011

Dear Cancer....

Here is a poem that Calli wrote this morning.  She said I could post it, It made me smile and laugh, you know why?  Calli loves to write, and has not written at all.  I don't care what she writes, it is good, and normal and makes me smile<3 

I need a vacation, I need a nap
I need to be done with this radiation crap

The bright blue flashes they hurt my head
I just want to go to sleep and be in my bed

All these pills they make me take
Give me acne and make me shake

They stick my arm and take my blood every thurs
What is wrong with me?Do i have some kinda curse?

They tell me all these things could go wrong
Why do the set-ups have to be so long?

It hurts my throat, I'm losing my hair
It hurts to eat, my head is bare

Im not allowed in the sun, my platelets are low
Dear cancer will you please just go?


Sunday, July 10, 2011

Baseball, Sunshine and Barbequed Chicken

GO PHILLIES!  After radiation on Friday, we went to Calli's first Phillies game.  Mike and I were not sure if she would be too tired or have any energy to stay awake, but she was determined to go and STAY till the end!  We had really great seats, thanks to some very wonderfully nice people who gave us tickets!  We were right behind the Phillies dugout, at the top of the first section, on a nice big handicapped platform- and OUT OF the RAIN!!!

We were waiting...and waiting...and waiting for the game to start.  It rained, no, it POURED!!!  There was a really long rain delay, so I went and got her all the things you eat at a Phillies Game- a HATFIELD hot dog, with all the works, crackerjacks, peanuts, popcorn, a tasty cake, Turkey Hill lemonade Tea, boardwalk I missing anything???  Oh yes!  A Philly soft pretzel and cheese :) AND A full pint of Turkey HIll Cookies n cream ice cream!

She ate it ALL!  Good thing too, she has lost quite a bit of weight in the last three weeks.  She enjoyed every single bite, now she is gonna kill me if I don't tell you that we shared everything but the hot dogs, we each got our own :)

So, they PHINALLY began to uncover the field, had a wonderful national anthem tribute to our veterans.....and covered the field back up- so many people left- too bad for them, because the game started maybe an hour later, but it stopped raining, was nice and cool, and we had a great time!

She screamed, hooted and hollered the whole game.  During the 7th inning stretch... I asked her if she wanted to go home, was she tired yet???
"NO WAY MOM, I AM NOT LEAVING!"  She was having so much fun, despite the smelly guy next to us, and the very drunk and hollering fans standing behind us :)  It was truly a great experience, and the homer that Raul Ibanez hit in the 11th inning, or was it the 12th- I lost count, was so awesome!  So we had a smooth ride home, and got to bed around 2 am- OYE!

I had stopped at Dick's Friday morning before our trip to Philly, and got her a UPF 50 swim shirt.  We were originally told to not have her in the sun at all, but...this is summer after all, and being inside is too much, and the sun is healing itself and boosts your energy and mood!  So, we made sure her head & neck were lathered with sunscreen, topped it with a bandanna and a UPF 50 hat!  So, yesterday was the first time she was in the pool...she is and always has been a fish.  She was apprehensive at first, but by the end of the evening she was swimming under water, doing handstands, and splashing along with us.  IT was soothing, fun and a good simple time for the four of us.  Today we went in again, and just finished a yummy barbecue chicken dinner.  That has always been a favorite summer dinner....
I really lathered on the lotion...he he he

So, it was a good idea to put the trampoline next to the pool......muhahhahaha

I can still hold my baby :)

perfect 10!

This weekend.....was almost normal :)  IT feels good, we had a good day yesterday, today and I want to keep those moments in the forefront of my mind.  Mike and Calli took some wonderful pictures of the dogs, garden and butterflies <3
Calli captured this bee on the echinachea

Calli took this one

Mike took this one.  These orange cosmos, were a few seeds given to me a few years back, by a dear friend.  They have multiplied each year, and this year, I had to pull hundred of seedlings that were all over the yard.  The butterflies and bees just love them.

Oh my little Roscoe, who could not love your precious face?

Butchy was a BAD girl, the Farmer had just mowed the field behind our house, and there were baby bunnies scurrying...and she went after them, and "played" with them in her may not be able to see it, but she has a very guilty look here :)

my little fluffernutter Roscoe, desperately wanted to be in the pool with me....

Calli took this one, she has such a great eye for simple beauty

Mike took this one of Scotty, perfectly posed by Scotty himself with his ball

bee in action, flying- so cool, MIke took this one

My favorite flowers, are everywhere, my marigolds re-seed themselves in abundance each year.  It is amazing, I got blessed marigolds , and the butterflies are everywhere!

Now for a I thought of this song, and each time I hear it, I just am reminded to enjoy the time we have, and the simple things, like flowers, butterflies, bumble bees, a day in the pool, chicken..yummy chicken :)  A phillies game...the smell of rain..the birds perching on my sunflowers.....I just enjoy it all.

I hope that you take time this week to take JOY in the simple things.  Enjoy the song :)

Friday, July 8, 2011


I am really thinking about going to Italy for my make a wish.
I need to make up mind... OYE!

Thursday, July 7, 2011

A little longer

 The morning after our family photos were taken, Calli's hair began falling out in the days went on, it just began falling off of her head.  IT was very hard for me to watch, hard for her to see, feel and- we are still digesting it. 

washing your hair this morning-feeling the weight of your affliction
smelling your hair this afternoon, as you lay your head next to mine
watching you brush your hair tonight my sweet girl,
I am sorry that I cried...
as the strands began to fall-no more one by one....
you are so beautiful my sweets, you are so strong ♥

I keep telling myself, It is just hair right?  But is it?  Not to her, it is not to her.  It is an identity in a sense, created....ever since this child was 1, her hair grew long, and curly- everywhere we went, strangers, friends, family...always had comments about only one feature of her......."Your hair is so beautiful, oh, you have the nicest hair, people pay good money to have your hair....etc..."

Years and years of comments, adorations in a sense about her of her young friends told her a few months back that if she cut her hair, he would not talk to her....really?  Over hair?

So, imagine you are losing your hair....and the steroids are doing not so lovely things with your skin....and you are 14 and a girl....

She knows about her beauty being from God, and from within herself, but lets get real is still hard. 

She was feeling kind of low the other night, when we saw a friend, who happens to be a guy and is a little older than her;  we had not seen him in a long time, and she was telling him how her hair was falling out, and she was getting a bald spot..and he replied, "Calli, don't worry, you will still look pretty when you are bald."  He went on to say that he really liked her hair short too. 

Now, I must say that I just about cried when he said that.  How could he know, that she needed to hear that at that very moment?
Are you beginning to see a pattern?  This is a teenage guy, who has no motive, just a friend, and he says just what she needs to hear.  This is not the sort of thing he just goes around doing either....I was just blessed, to know that God sends the right people at the right times, to encourage us.  He shows us daily, that He loves us and is listening to us, and here with us. 

So tonight, Calli decided that Dad would buzz her head...
But first, she cut some, and then...for the first and ONLY time in his life...Aidan was allowed to cut his sister's hair! 
I gave her a mullet! 
She WILL NOT let me post pics of the mullet, it was however .....great! 
business in the front and party in the back...

Then we went on, and Mike began buzzing, I wanted him to give her a Mohawk, but they both gave me that same, "You are crazy Lucy" look. 

It was emotional, but as a family we all together said goodbye to her hair for a while.

One thing I did notice was how much she looks like Aidan!  And of course, like her father :)

I washed a bunch of pretty hanker-chiefs that she picked out in Ivory Snow.  It is that good old-fashioned baby clothing wash.  IT smells so sweet,and reminded me of when I washed her baby clothes for the first time in it.  She was still in my womb, and I was trying to prepare as much as possible in those last days before she came....I remember washing each item, and smelling it deep...taking a big whiff of the sweet smell.  Today I took the same whiff.

She is doing much better now.  She is weak and tired, sometimes queasy, but is not sick at all. She has been keeping all of her food down, and eating here and there :) I do not know what she is going thru, not one bit...and when trying to understand how she feels, I cannot help but remember how wonderfully awful the first three months of my pregnancy was with her.  I could not do anything but sleep, and eat celery and oranges...I threw up every day, and several times a day for 3 straight months....

We are getting used to the routine of the daily drive to Philly.  Some days it takes an hour, today it only took 42 minutes!  Most days the drive home is at least and hour and a half, if not two.  That is kind of hard, with a very tired, and queasy Calli in the car.    But I am just thinking of it as a full-time job, and it goes a bit easier.

We have been so blessed to come home to a meal already made by our neighbors, friends, local churches and strangers too!   They have been so delicious, and comforting to us.

Each week, we go at least once if not twice to the Oncology Clinic at CHOP.   Each time we go, I am just so humbled, and in awe of how many children there are with cancer.  I sit and wonder....why so many have it now?  Did they have it 50 years ago?  I look into each face, of each child, mother, sibling, can see hope in some of their eyes, and hate in others...there is a lot of fear and uncertainty. 

As we traveled up the elevator today to the 4th floor, there was a mother and her young son in the elevator with us.  I could not help but think that perhaps she has the wrong floor- 4th floor is one thing- ONCOLOGY.  Her son was vibrant and healthy-looking and had a lot of hair.  Then it dawned on me, as we got closer to the floor, and as her brow began to look pensive...This was her first visit.

As we all stepped off of the elevator, she took a hushed but deep gasp.  Before her was a sight that no one could prepare her for.  Many children, bald or balding, in wheelchairs, with IV's of blood, transfusing into their little bodies, beautiful young strapping teenage boys, too weak to walk........She cried and could not contain her emotion.  I wanted to grab her and hug her hard, and tell her I know how she feels.  But I did not....It is a moment, that we kind of need to feel alone in.  IT is a moment that each of us as a parent must go through, it is sort of like an initiation.

As we found a seat in the crowded waiting area, my thoughts turned to remembering our first day going up to the 4th floor.  What others must have thought of us stepping off the elevator, shedding our first tears at the realization when we peek out and step into a world which too many experience, but few really truly get to see the reality of. 

Each day there, and across the street at Penn., I see the same faces.   Calli got annoyed with me, because "You say HI to everyone Mom, why do you do that?"  Why do I do that?  Well, When I see their faces, I see mine.  I give a warm smile, and cheerfully say hello, or some days I am crying and I still get out a shy "Hey."  I do not know how to be anything but transparent right now.  These moms, and dads, they know the thoughts, the emotions, and  feelings that I have right now..... and words we push down...I am meeting many families and like to talk to them, and each one I meet will not leave my memory, my mind.  I pray for them, and pray that they may find a hope in the Living God. 

When I feel like complaining, or whining...I think of Calli, I think of those precious children.  Why waste my breath? I am just realizing how self-focused I have been in my life.  Complaining, and whining, and wasting time on stupid things.    I have nothing to complain about, no one to blame.  I have life, hair, a garden, a roof, a car, new tires, 2 blessed gifts from God, a husband who loves to work, who is not lazy, and I have a LIVING HOPE. 

What can I do for you today God?  I can't thank you enough for all you have given to me?   I was brought up thinking, I could actually help God...I mean it was what was taught....and as a child, I learned that If I brought my bible to church, I got a sticker,and if I was quiet or helped the teacher, I was patted on the head, and if I memorized scriptures and did not miss a day...I got rewarded. 

I mean.... I get teaching children to be diligent, and all..... but as an Adult, it is a little hard to let go of the thought that I have to perfect and good and try try try to be perfect as He is perfect, and then I get a sticker from Him...get his approval. 

I am realizing that I can never do anything to be worthy or pure or good enough to win the approval of God.  I have learned, the hard way, that complete and absolute surrender, climbing up in my Daddy's lap, and letting Him hold me, teach me, inspire me is how I get close to Him, how I learn from Him, in His arms, cleaving and clinging to Him matter how long it takes, He is willing to hold me, and teach me, his ways are gentle.....I am learning to trust Him, yes I am still learning to Trust that my Father in Heaven loves me, and wants to the best for me, and wants to bless me....despite me.

This song is so pure, and true, sometimes we just need to let all else that gets in the way of our time with God....go, let it all go.  It really is so simple.

What can I do for You?
What can I bring to You?
What kind of song would you like me to sing?

'Cause I'll dance a dance for You
Pour out my love to You
What can I do for You beautiful king?

'Cause I... can't thank You enough.
I can't thank You enough
What can I do for You?
What can I bring to You?
What kind of song would you like me to sing?

'Cause I'll dance a dance for You
Pour out my love to You
What can I do for You beautiful king?

'Cause I... can't thank You enough.
I can't thank You enough
All of the words that I find... and I can't thank You enough.
No matter I try... I can't thank You enough.
Then I hear You sing to me

"you... don't have to do a thing
Just simply be with me and let those things go
'Cause they can wait another minute

Wait... this moment is too sweet
Would you please stay here with Me
And love on Me a little longer"

I hear You say...
"You... don't have to do a thing
Just simply be with me and let those things go
'Cause they can wait another minute

Wait... this moment is too sweet
Would you please stay here with Me
And love on Me a little longer
I'd love to be with you a little longer
'Cause I'm in love with you