A little longer

 The morning after our family photos were taken, Calli's hair began falling out in strands...as 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 hair....one 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 here.....it 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?
  God.
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! 

 Then....

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, father....you 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 ....no 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