The Labyrinth

I was thinking about my life the other day.  And this movie came to mind.  It was one of my favorites.  If you are not a David Bowie fan and a fan of the muppets, steer clear of this movie. :0)  But many times in my life I have been like the girl in the movie.  Searching.  I think we all find ourselves in this spot.  She goes on this great quest to save her brother, only to realize she is the one who needs saving.  She is so wrapped up in her own little world, she forgets about the world around her.  My favorite part is when she is dressed up in this lovely ball gown.  She is at a masquerade, searching for happiness.  She is starting to realize that this world she has created is not that much better than the one she lives in.  In the end, she rescues her brother and returns to reality, realizing it is ok to rely on others, and just enjoy life. 

Oh how I am like this girl!  I have always been guilty of just picking up the pieces and moving on without taking time to really examine the situation and make sure I am ok.  I am great at putting on the "fancy ball gown" and turning my back on the little things.  But all of us will find that if we go one like this, the labyrinth of life will just crash down around us.  There has to be a point where we reach out. 

Many of you have seen Brooke since the surgery.  She is still our spunky little gal!  For the most part she is doing great.  But we have been dealing with some interesting new character traits.  Many of you have encouraged me and said that it is an age thing.  And some of it I agree.  But I have been around enough children to know that some of it is not.  Whether it is behavior or pain, I am searching to find a way to help her.  Some days she seems fine, others she is mildly disobedient.  And yet others, Oh it takes all my strength to get through those days.  Just the other night she had a "meltdown" at the library.  This was only one week after her other "meltdown" at the library.  After it happened, I reached out to a friend with Chiari, asking for help.  The sad thing is, there is so little that can be done to help.  Beyond pain management, there is just not much else. 

Our course of action through our Labyrinth: asking others to be patient with us and understand.  I do not know what the future looks like.  I do know I have to make our lives as simple as possible, so Brooke can have a safe haven to rest and recuperate in.  She needs discipline yes, but she also needs ways to escape when she hurts.  We know movies help her relax.  Baths also help to relieve symptoms.  If you see us somewhere though, and Brooke is screaming, hitting, and running from me through parking lots, pray.  She is a strong little girl and getting stronger each day.  We love her so much and want her to be healthy, happy and safe.  When she gets like this she is none of these.  Someone said today: The greatest place love was shown was the cross, the greatest pain that was endured was the cross; Love is both beautiful and painful.  (thanks Mr. Mike!)  I believe this.  So no more twirling around in my ball gown, I will be in muck boots from now on!

The Dance

The past 2 days have been wonderful for Brooke.  She has been happy and appartently pain free.  Yesterday while leaving the grocery, she twirled and danced to the van.  Looking at me with a great big smile, I knew her day was going good.  Then today, Brooke was again dancing while standing in line at jonanne's.  A few ladies looked on and smiled.  When anyone comments on her haircut, she just says, "That's because I had brain surdery."  They are really just saying her hair is cute! :) I am so glad for moments like this.  Moments that I have to call her down for being to wild.  Because I know that it will quickly pass. 

Two Days of good followed by..... well not so good.  Tonight at play practice (which I was worried was too much for her, but big bro was doing it, so she just had to) while singing a song, she fell apart.  She was standing with all the other kids, they had to take a jump back and she jumped wrong and jarred her head.  I watched as that little lower lip started to quiver.  Then came the confused look as she tried to find me.  I motioned for her to come, but she stood there and just cried quietly.  Thankfully my mom was able to get her and bring her to me.  Poor little lady cried the whole way home.  She was broken hearted because she thought she would miss being in the play now.  I told her she could still do it.  When carrying her in she pleaded for me to stop bouncing her.  I assured her I was walking as gently as possible.  My heart aches at moments like this. 

If you know me, you know I love music, but have no musical ability.  In fact, I lack all rhythm and can't hear the beat in music.  I have tried numerous times to play an instrument, and have been told I would never learn to play.  This frustrated me so much!  And yet, I was always able to dance.  For some reason when it came to ballet, I could remember where each step went based on the music.  I could never count music, but I managed.  Some dances took more practice and were harder to learn.  But I loved to dance!  There really was no greater joy in my life!  Dancing can transform you, let you escape, and focus only on a moment. 

For us, that is what life is...a dance.  Although we can't count every beat, we can slowly try to figure out how to deal with each day.  We can focus just on the moment, bad and good.  And if we do it just right, our lives will reflect something beautiful, even if at times it is a struggle.  This is my hope, to help Brooke dance through her life.  To be unaware of the chaos and pain around her for even just a moment. 

Hero of the Month

Yesterday a package arrived by mail.  A fun package.  I always loved the fun packages as a kid.  When Brooke opened it up, we discovered that she was North Shore Hospital's Hero of the Month for September!  This is a program sponsored by Children's Wish Network.  She was sent a t-shirt, certificate, medal, and gift card.  But more important than all that was the letter.  The encouraging words.  Our little lady was inspiring others!  I was so proud, and even more blessed.

As a family, we have been showered with fun little packages.  Some are just little notes of encouragement here and there.  Some have been financial help and wonderful meals.  All are appreciated.  One thing I have discovered though is I am not as quick to get my thank you notes out.  Please know my heart, I think of everyone who helps with kindness and love.  I pray for each of you.  And some day you will get a card of thanks!  You are our families heroes!

I want to thank so many of you for coming to the Chickfila Benefit.  What a great turnout!  Brooke loved seeing so many of you!  She actually did very well for the first part.  She wore out towards the end, and seeing the cow sent her over the edge.  Thank goodness Dad arrived to save her and take her home.  Brooke loves her daddy and he jumps in to be her hero all the time!

We really loved seeing you all.  What you all did will help in so many ways.  I have to practice deep breathing as I open each medical bill that comes in.  I know that it will be ok, and trust that God is showing our family that money is not a cure for anything.  I was quickly brought to this realization just the other day.  Some amazing people I know went on a mission trip to Haiti.  One of my friends was sharing stories with me about hospital care in Haiti.  I cringed thinking about any child not having the proper care they needed.  To not even have food provided, everything needing to be brought in by the family.  I thought of all the things we take for granted and how fortunate our children are.  To all those who are missionaries, I pray blessings on you!  You all deserve the Hero of the Month Award!

Another little lady that deserves this award is Brooke's new little friend, Danica.  She also has Chiari.  She went for her second surgery yesterday.  This brave little hero is now trying to fight a very tough battle.  Brooke sat at the kitchen table praying for her yesterday.  She prayed a prayer only a person who understands what Chiari is all about could pray.  I listened as she asked God to protect her friend.  These 2 little ladies can be heroes to one another!

We are surrounded by heroes everyday.  Most of the time, we never tell them thank you or even acknowledge their efforts.    But I encourage you to find just one hero tomorrow and thank them.  What would we do without the Heroes of the Month!