Wednesday, October 31, 2012

Karagen's Tribute


      As we gather here today we do so with great sorrow.  Each and every one of us, to some extent were touched by Karagen and her life.  I am amazed how one little girl, living only 9 years could reach our hearts in such a powerful way.  She would want us to cry, because tears cleanse our pain.  She would want us to be happy even in her death because she is free!  She would want us to establish stronger family bonds, to love completely.  To see beauty in the faces and people around us, to always look beyond to the heart, to breathe deeply and enjoy life with every fiber of our beings, she would want us to live!
         In the coming days we may feel robbed and perhaps already many of us do.  We may feel like her little life was torn or stolen from us.  Let me assure your broken heart, she has not been stolen!  Stealing would suggest that some unknown, cruel person came and took her away from us while we were unaware.  This is not the case!  We know who came and took Karagen, tenderly and lovingly took her to Him.  Jesus came and with aching tenderness took her home!  He took her to be with Him, so He could cherish her completely and lavish her with love endlessly.  Yet, even while He did so, I believe His heart ached for us, knowing how losing her would pierce our hearts.  He did what was best for her yet grieves with us through our loss.  He rejoices that his little girl is literally His!  She is not in some far away place, she is with Jesus!  We are only separated by time.   She is lost, but she is found!  If I had to lose her to anyone, there is no one I’d rather lose her to than Jesus! 

  Safe in the arms of Jesus, safe on His gentle breast
There by His love o’ershaded, sweetly her soul shall rest.

  Karagen taught me so many things as a mother.  When I think of her short life I think of firsts.  She was my first full term pregnancy, my first baby, my first girl.  She was the first person I never asked to love me, I never had to woo her or work hard in any way to receiver her love.  I remember her first smile, the first time she rolled over, her first tooth, her first steps, her first word, which was “tickle, tickle”.  She was my first baby to potty train, I remember her first day of school, the first time she rode her bike, the first time she played Amazing Grace on the piano here in this church.  So many firsts with Karagen!  I thought I would be the first one to make it to heaven, but she beat me to it, she got to go first! 
      She made me a mommy.  She made Jonathan a daddy.  She made our parents grandparents.  She made our sibling aunts and uncles.  In so many ways, she has helped shape me into the woman I am today.  She made friends easily, she made people come out of their shells and loved her.  She showed all of us what unprejudiced love looked like.  She loved people with abandon and blindness.  When she looked at them she didn’t see their faults and failings she just saw them!  She made messes, but she helped clean them up.  She was my right hand woman and helped me without being asked.  She was a mother hen and loved her siblings greatly.  She always felt responsible for them, in fact her last conversation with Emmaus was over what she ate at school, she wanted Emmaus to eat healthy.  She was the little girl who always had a sparkle in her eyes, who always gave and shared and who always noticed.  She was one of the six little people who kept my days full to overflowing with joy and happiness.

  I have not balked at taking care of her these last 6 and  ½ months.  Taking care of her was a privilege and an honor.  She told me several times in the last 3 weeks that I was the best nurse and told me all the time that I was the best mommy.  Through the tears and her intense pain she still said thank you.  She suffered patiently and quietly.  When her family or nurses spoke to her or were near, in spite of her pain she would muster a smile.  She cared about people, her hospice nurse was amazed at the details Karagen remembered about her. 

   If there was a word that described Karagen it would be caring.  So many times Jonathan and I saw her living her name!  I often thought that we should have spelled her name C-A-R-E  A-G-A-I-N, because that’s what she did, she cared again and again, over and over.  How she gave, and cared and loved was an inspiration and spoke to me as a tender example of just how much one can care, and show it.  When someone loves as freely and willingly as Karagen and tells us they care it is easy to believe.  I marveled so many times at how she reached out to people and how she touched them and wished I had the courage to love like that.
There's a whole in my heart that burns and aches. Her flavor, her sparkle, her light is forever extinguished. Every time I look at one of our children I see her. When I look at Jonathan I see her. When I look at her chair, the room she was in, her clothes, I see her. When I look out at our back yard, I see her playing there. All those glimpses of her, everything leads me to thoughts and memories of her. All those millions of times I have gazed at her these last nine years and have been filled with love and joy, she took my breath away.  She was so much a part of all of us. There's a face missing at the table, a warmth missing from our home. Our family will always be one too small. Oh the joy when you add another child to a family, the despair when one is taken away.
       In the coming days, months and years we will all feel an ache.  We will feel the loss and the hurt.  We must find a way to focus not on our loss but her gain!  She is safe with Jesus, she will never hunger or thirst or feel any kind of pain.  We must not pine and whine.  We must not focus on all the times we didn’t get with her, but on all the times we had with her.  If we run through the list of all the positives that she is missing we are in grave error!  We are the ones who are missing out.  Karagen is blissfully happy, she has seen the face of God!  Remember all the  negative things she is missing, she is missing all the pain and disappointments of this life, the aching and tears, she will never have to experience again!  She is in the very presence of all that is good and loving.  She is basking in the fragrance and feel of Jesus, of heaven.  She is hugging her loved ones, she has cuddled with Jesus, she is blessed, she is bliss!  So if you find yourself thinking, “poor Karagen”, like I have, stop yourself and list all that she has gained!   She is not poor, She is Home, she is Free!
        Karagen, heaven is not just a little sweeter, it's brighter and more beautiful. I have no idea what it really looks like or feels like or smells like. But you gave me gave us a little bit of heaven on earth. Because I know you, and what you brought to us, heaven is not just a place anymore, it's a home. It's not just a destination, it's a hope, it's not just a goal, it's a reunion. I will forever miss you, I will see you everywhere, always. I love you all the numbers in the world plus one! I love you the mostest with the hostest!  Thank you for all that you gave me as my daughter.  You loved me completely and understood me.  You lit up my heart and life with your own special unique light!  I promise you that I will love just as deeply if not deeper, even though I know how much it can hurt to do so.  I promise to continue to be the best mother and to hug and kiss all your brothers and sisters more.  I promise that even though I feel like a piece of my heart has been torn out I will still live to love.  I promise we will find a way to move forward, even if it is like we have had a valued limb amputated and we will spend the rest of our lives trying to live without it.  I promise to smile and laugh, to dance and sing.  I promise to love you forever and to cherish your memory.  You gave us so much and we promise to find a way to give and love like you did.

You will be forever in our hearts, forever safe in Jesus arms!

 

Wednesday, October 24, 2012

The Day After

   I woke up from a vivid dream @ 4am. A little precocious toddler, with a head full of light brown hair, smiling at me with that adorable twinkle in her eyes.  Then the realization socked me in my stomach and burned in my heart- she's gone!  Followed directly by thought: "God, you took her!" 

   I have spent so many nights for the last 3 weeks getting up many times a night to minister to Karagen.  I have spent the last 6 1/2 months researching, reading, applying, praying and desperately seeking for a way to help Karagen beat her cancer.  Jonathan and I spent hours trying to figure out ways we could help her body heal.

  She's gone.

  There's a whole in my heart that burns and aches.  Her flavor, her sparkle, her light is forever extinguished.  Every time I look at one of our other children I see her. When I look at Jonathan I see her.  When I look at her chair, the room she was in, her clothes, her blanket keeping me warm this morning, I see her.  When I look out at our back yard, I see her playing there.  All those glimpses of her, everything leads me to thoughts and memories of her.  All those millions of times I have gazed at her these last nine years and have been filled with love and joy.  She was so much a part of all of us.  There's a face missing at the table, a warmth missing from our home.  Our family will always be one too small.  Oh the joy when you add another child to a family,  the despair when one is taken away.

 For Karagen:
Safe in the arms of Jesus, safe on His gentle breast
There by His love o’ershaded, sweetly her soul shall rest.
For us:
Jesus, my heart’s dear Refuge, Jesus has died for me;
Firm on the Rock of Ages, ever my trust shall be.
Here let me wait with patience, wait till the night is over;
Wait till I see the morning break on the golden shore.

Karagen, heaven is not just a little sweeter, it's brighter and more beautiful.  I have no idea what it really looks like or feels like or smells like.  But you gave me-us a little heaven on earth.  Because  I know you, and what you brought to us, heaven is not just a place anymore, it's a home.  It's not just a destination, it's a hope, it's not just a goal, it's a reunion.  I will forever miss you, I will see you everywhere, always.  I love you all the number in the world plus one!  I love you the mostest with the hostest!

  I/we will find joy, we will find a way to cope, to function.  We will find a way to create a new family dynamic, new traditions, new beginnings.  God will be our ever present help, and has been! But for now, we survive.

Monday, October 22, 2012

I Never Thought....

     I never thought we would be at this place....this twilight zone between death and healing.  It''s strange, surreal.  Realizing that at any moment Karagen could breathe her last breath and be taken from us forever.  Seeing her decline, loss of leg function, loss of arm and hand function, loss of all movement from the neck down.  It's a weird place to be, seeing with human eyes the IMPOSSIBILITIES yet seeing with the eyes of faith that there is NOTHING too hard or IMPOSSIBLE with God. 

      Here we are, on the fence so to speak...wondering which way things will fall.  Realizing the grass is the same shade on either side of the fence.  To have her here with us, to watch her grow up, to see her amazing and valiant spirit be a witness and inspiration as a living example of God's grace.  Or to let her go...release her to her heavenly Father, who loves her so much more than we do.  He would cherish her completely, comfort her and set her free.  You see, it's green on both sides, one side is loss (ours) the other is gain (hers-God's).  My side-the side of loss is shadowed and dimmer, but just as green.  Does this make any sense?

      I wish I knew the outcome, the final result.....and yet I don't.   Here we are, back at the place we always get to, the not knowing.  The strange, quiet place of what?

     God is an omnipotent God- He already knows what will happen.  I know He could choose to do either.  He could choose to heal her, He could choose to take her.  He is justified in doing either.  Both options are good-in the eyes of the Soveriegn.  My preference is clear, His is not.  My faith believes that He is MORE than able to bring healing and restoration.  My instincts and knowledge of Him (from brief glimpes of His earthly actions) tell me-no shout at me, that even in death He is not limited and He has the power to bring the dead back to life!

    I never thought we would have a child with cancer.  I never thought I would be watching my child potentially die.  I never thought I could hurt this bad but not shed a tear.  I never thought I could have such intense HOPE.  I never thought faith and trust could feel so heavy.  I never thought I could handle something like this.  I never thought about God's suffering when He watched His Son die.  I never thought how cruel life is to keep on moving and going while ours is stalled here.  I never thought I could love and sacrifice and love and give and cherish and hope and hope and hope and hope.  I never thought.....I never.....I.

    So here we stand, vigilently watching and waiting.  Here we must stay-for now.  When will the end come-when will the beginning begin?  We don't know-I don't know, but HE (God) does!

General Update:
Karagen is on day 26 of her DMSO treatment.  Today she has had some upper respitory mucous and is having difficulty breathing, she has oxygen on.  Today has been much better for pain, she is sitting up in bed, pain free and resting.  Her neck has lost its stiffness and we are able to move her more comfortably.  She is struglling with constipation from the morphine and lack of movement.  She has a hard time talking as it takes too much energy and has whispered most of the day.  She sleeps a lot and doesn't say too much.

Saturday, September 22, 2012

Update on Karagen


    As many of you know we are trying to raise money for Karagen to go to a specialized Cancer Treatment Center.  We need to raise over 15,000.00 for the expense of this center as it is not covered by insurance.  There have been some concerns raised over the legitimacy of this center, we did not do an Internet search for cancer cures on the Internet and just happened to find it.  We were referred through Karagen's doctor.

     It is our hope and desire to have Karagen there by this coming week sometime.   This is possible!  Jonathan and I are desperate, but ever trusting in God.  We are willing to go into life long debt to save Karagen's life, we are willing to do whatever it takes to save her.  Let me state here strongly that I have a strong conviction that God has a plan for Karagen, He is NOT finished with her yet.  We believe that God can and could heal her at any time but that He also uses other methods to bring about healing and restoration.  When I say He is not done yet, I am not speaking as a mother who almost last her daughter over the weekend, or who could lose her any day if we don't find treatment, or as the mom who gets up all through the night and first thing in the morning to make sure she is still breathing.  I am speaking as the girl who has no where else to turn and who recklessly trusts her Heavenly Father to do what she cannot!

     So please, if there is anything you can do, give, pray whatever please consider doing it!  And as always thank you for all your love and support.  It will take all of us working together to help get Karagen well!


Thursday, August 30, 2012

Gerson Therapy


This is just a little update on how we are all doing.

About 2 weeks ago Kargen had an MRI which showed that all her tumors had grown some.  Her cancer is not as aggressive as origionally thought so this slow growth was good news-if cancer is ever good news-right?

We went to Disney World the Monday after and had an amazing time, I have few seconds to spare right now but will try my best to get some pictures posted sometime.  The kids were exhausted and so were mom and dad : )

Since we have been home Vaughn, Emmaus and Silas have all started school.  They are doing good and love it! 

We are also going full blast into Gerson Therapy with Karagen.  This is very intensive, if you want more info, go to the link or google it.  She drinks certain juices every hour, receives 5 coffee enemas a day and her foods are completely organic, cooked from scratch and prepared carefully to not deplete the vitamin and mineral content.  We rise at 3am every day to give her an enema, this is to stop her tumors from poisoning her body.  The theory behind the therapy is to bring the liver back to it's highest functioning state, to rid her body of toxins and to stimulate her immune system to destroy the cancer cells, digest them, then eliminate them.  We are a little overwhelmed right now trying to juggle everything, Gerson Therapy is a full time job, and we already have full time jobs. This therapy is to last 2 years at the least, but if God uses it to save Karagen's life it will be worth it.  If we lose her anyway, it will STILL be worth it!!!!

  God had provided the needs of buying her groceries and her medicines and supplements.  We simply could not sit by and do nothing while we waited for the tumors to take over her body.  The coffee enemas take her pain away and the juices give her energy, Karagen transformed before our very eyes on this therapy.  A HUGE answer to prayer was the only doctor in the US has agreed to be her doctor and oversee her treatment.  So far she has charged us NOTHING!   Our goal is to save enough money to fly Karagen out to get further treatments from her.

Today I was given a rare gift-time alone at home.  Three children are in school, a lady in our church is watching Jachin and GraceyAnna, and Jonathan took Karagen to her doctors appointment in DC.  I am trying to catch up on housework and laundry, the things I have very little time to do when Karagen is home due to the therapy.

Thank you everyone for your continued thoughts and prayers!

Friday, July 13, 2012

Flashes Of Hope








These pictures were taken on April 18, after Karagen had her surgery to remove some of the tumor that was compressing her spine.  In my mind and heart I remember this time period as very dark and very hard.  Adjusting to having a child with  a terminal illness, watching Karagen suffer from her surgery and contemplating the preceeding weeks of fitful sleeping and pain filled nights-all the results of her cancer.  Wondering every second what the future would hold and frantically trying to adjust my expectations, while desperately missing our children at home..  In the midst of all that- these pictures were taken.  I can't help but say-there were flashes of HOPE and that is what we did and DO hold onto! 

These pictures were taken at National Children's Hospital in DC in the Oncology Clinic waiting room by volunteer photographers.  They were completely free.

Friday, July 6, 2012

Look Who's Walking!




Look whos walking!!!  At 9 1/2 months she gets the record for the earliest walker in our family!