3.14.2011

A Momma's Emotions

First I want to start by saying that Lucy had an AMAZING day.  She did great in PT, she has a normal constitution and her attitude was better today.  Another Dr. B came in this morning and told us that they would be removing the drain from her back by mid-morning.  It wasn't 5 minutes later we realized that it had come out on its own and was laying on her bed.  OOPS!  Oh, well.  That just meant that there would be no scary doctors hovering over her trying to remove it.  Thank you Lord!

So, here's the plan.  Drain removed and now it's time to wait.  There's that horrible 4 letter word again.  WAIT.  You would think that this would be getting easier, but just the opposite is true.  The more progress I see her making, the more antsy I get to move down the road!  What we are looking for is a build up of Spinal Fluid in her back or head.  So far so good, but it can sometimes take several days for you to start noticing a problem.  But, everyone here agrees that at some point we've got to bite the bullet and move on with treatment.  If everything continues to go well, there's a chance we could be at St.Jude in a day or two.  If we get over there and Lucy starts having swelling problems, then we will have to come back to Le Bonheur to have a shunt put into her brain.  Please pray specifically that God would continue to heal her back and she will not have any buildup of fluid

I am trying to stay guarded, but I have to admit I have my hopes up just a little that we might actually make the move this time. 
*****************************************************************************

When I went to Target yesterday I was very weepy.  I cried a lot in the car and even cried in the store.  Today I had lunch with my friend Sara.  It was a great lunch and a nice reprieve from the hospital.  But during the whole lunch I was very weepy again today.  I think just being out in the real world was a slap in the face by the huge, ugly hand of our new reality.

You see, inside these hospital walls I feel protected.  Everyone on the Neuro floor is in the same boat.  Whether or not they are dealing with cancer is inconsequential.  Everyone is mourning a child's illness.  Every one's life up here has stopped just like mine.  There is no reminder that "normal" children are running around outside, playing, going to school.  We all live in our own little world where almost every thought revolves around sick children and medicine.  The best way to explain it is when my college roommate Jennifer came to visit today I was in the hall talking with another family that we have met here.  Their 2 year old daughter has Medullo and I introduced them to each other.  While Jennifer was moved to tears by this little girls' situation I have almost become numb to it.  How can that happen in just 20 days?  I guess because it is all I see every, single day.  And this is what life will be like for the next 6 months.

I worry about my return to the real world and then I worry more about Lucy's.  I know she is resilient and will bounce right back, but as a mother I worry myself sick about her comparing herself to others for the next few years.  I don't know if I will be able to handle it when her hair starts falling out.  The very thought of someone staring or another child making a comment just breaks my heart in a million pieces.  She has cancer and this is all part of it I know.  But knowing all this still does not make it any easier.  As we prepare ourselves for the move to St. Jude I am trying to ready myself for the battle ahead.  At St. Jude I will be surrounded by mothers of cancer children each and every day.  At home, I won't.  I guess it's time I put my big girl panties on and deal with it.  I've got to be strong for Lucy and set an example. 

As I told my friend Amanda the other night, life will never, EVER be the same for our family.  We will always be looking over our shoulder when it comes to health issues.  We will always have a child that was affected by cancer and will never take that fact lightly.  Every headache, every fever...I know will send us reeling.

I also know that we will never, EVER be the same in many good ways.  I think I will forever appreciate all the little happy moments life has to offer. I don't think I will ever be tied to my calendar so closely again.  What my kids wear, what their hair looks like; none of that matters anymore.  There will be lots of kisses and lots more hugs around our house.  Birthdays will be celebrated a little longer and Christmases will mean so much more.  I know I will enjoy the sun a little more, spend more time outdoors and every moment I can with my children just enjoying life.

While I wrote most of this entry, Lucy was asleep on the couch with her head in my lap.  What a precious moment we shared.  That is what I am taking to bed with me and I will look forward to the moments I have with Jack and Ella tomorrow afternoon.  That's what this life is all about.  Thank you dear Lord for today's victories.  Tomorrow may not be as good, but I won't worry about that right now.  My baby is resting well, without pain and with no worries at all.  That's good stuff!
post signature

38 comments:

  1. Lifting sweet little Lucy up in my prayers daily (and the rest of you as well). Go easy on yourself, Mama! You're dealing with a nightmare and handling yourself with such grace. It's okay if you have an emotional day! Thinking of you!

    ReplyDelete
  2. Our family is praying for you, and we will pray specifically about fluid build-up.
    In Christ,
    Paige

    ReplyDelete
  3. Praise God for a great day! My 5 year old son and I pray for Lucy and your family each morning on the way to school and each night. I know it may be hard, but God knows you are strong enough to handle it and everything happens for a reason. It makes you sometimes question Him, why? but He has a plan for you. Praying for your family and sweet Lucy!

    ReplyDelete
  4. Praying for sweet Lucy and your entire family daily. Also, I was hoping that you could email me or post a mailing address that I can send Lucys gift to. I had a special bunny made for sweet Lucy as her belated birthday present. I also have a something special for you and your precious family. My name is Sally Burrows and I live in Texas. My heart is just breaking for your family and I am praying for strength for your family in the days ahead. She can do it! Go Lucy Go!

    Sally
    sallyburrows@hotmail.com

    ReplyDelete
  5. We are praying for Lucy, my 5yr old (kynzie) asks me about her everyday since I told her about Lucy. When she got out of her bath last night she came up to me and said "mommy, I prayed for Lucy" .... Just wanted to let you know that we are praying for her and your family. God can do anything, you know, far more than you could ever imagine, guess, or request in your wildest dreams..

    ReplyDelete
  6. What a great post, Kate. What an amazing outlook. You continue to inspire the rest of us out here in the "real world"..I will pray that the transition between hospitals will be as smooth as possible.

    ReplyDelete
  7. I am so glad you have been able to get outside the hospital for a breather... a "reality" breather, it seems, but you are preparing for the journey that lies ahead just as the doctors are preparing Lucy's body for her treatments (treatments that will ultimately make her BETTER, keep in mind :). I know God's arms are around all of you, and we are praying for each of you daily. I pray specifically that there will be no more fluid build-up, and Lucy will have a smooth transition to St. Jude SOON!

    ReplyDelete
  8. You're right, life will never be the same again...but this journey will shape you guys AND Lucy for the better. My daughter is who she is because of the victory she has had over cancer. Its hard not to feel sorry for yourself and you will have moments when you do, but realize that your little girl is not to be pitied--these kids are FIGHTERS! They can handle this! And its our job as their Moms to be strong and hold on for the ride! God will use Lucy in a mighty way, and will strengthen your faith in the process. I truly pray that you guys get to move to St.Jude SOON, what a place of miracles!!! We too were at LeBonheur first, though just for 4 days, but WOW what a difference! Is it weird to say I'm excited for you guys to move there??? That should tell you something! :) Hang in there!!
    ps. When Micah was bald it was the cutest thing EVER! And it made me appreciate her sweet blonde hair when it came back in. Oh and for us good southern mamas, they have HUGE grossgrain hairbows on elastic headbands these days, so no worries! (wink!) :)

    ReplyDelete
  9. Just wanted to let you know I am praying for Lucy and your family.

    No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you come through it.
    1 Corinthians 10:13

    http://www.youtube.com/watch?v=71v_Bg3FbPM

    ReplyDelete
  10. I can't even begin to tell you how many people I've seen comment on Facebook, Blogger, etc, about Lucy and her story. You have many many MANY prayers going up for your sweet little girl...and for all of you.

    I wish that your family was not having to go through this, but thank you for reminding me how precious my time with my daughter is. I'm a busy momma who works, goes to school, and takes on all the endless responsibilities of a mother and a wife. I'm making it a priority to spend as much time loving, kissing, and hugging on my daughter...and less time on making sure every hair is in place, and every outfit is spotless. Thank you.

    ReplyDelete
  11. Praise the Lord for the good day! I'm praying for a miracle for your Lucy!

    ReplyDelete
  12. Kate,
    I was driving home tonight and had the radio on K-Love. There are many songs that I hear that remind me of your family and sweet Lucy girl. One that I heard tonight that made me think of you all was "What Faith Can Do" by Kutless. I want to post the lyrics (and I don't always have a chance to read all of the comments, so I'm sorry if someone's posted this song already) because they describe exactly what your family and Lucy are going through right now. It may be a long road ahead, but you believe in her. WE ALL believe in her. She's a fighter and we have faith that she is going to beat this thing. My favorite parts of the song are "Impossible is not a word." "Overcome the odds. You do have a chance. (That’s what faith can do.)"

    What Faith Can Do
    Kutless

    Everybody falls sometimes
    Gotta find the strength to rise
    From the ashes and make a new beginning
    Anyone can feel the ache
    You think it’s more than you can take
    But you are stronger, stronger than you know
    Don’t you give up now
    The sun will soon be shining
    You gotta face the clouds
    To find the silver lining

    I’ve seen dreams that move the mountains
    Hope that doesn’t ever end
    Even when the sky is falling
    And I’ve seen miracles just happen
    Silent prayers get answered
    Broken hearts become brand new
    That’s what faith can do

    It doesn’t matter what you’ve heard
    Impossible is not a word
    It’s just a reason for someone not to try
    Everybody’s scared to death
    When they decide to take that step
    Out on the water
    It’ll be alright
    Life is so much more
    Than what your eyes are seeing
    You will find your way
    If you keep believing

    I’ve seen dreams that move the mountains
    Hope that doesn’t ever end
    Even when the sky is falling
    And I’ve seen miracles just happen
    Silent prayers get answered
    Broken hearts become brand new
    That’s what faith can do

    Overcome the odds
    You do have a chance
    (That’s what faith can do)
    When the world says you can’t
    It’ll tell you that you can!

    I’ve seen dreams that move the mountains
    Hope that doesn’t ever end
    Even when the sky is falling
    And I’ve seen miracles just happen
    Silent prayers get answered
    Broken hearts become brand new
    That’s what faith can do
    That's what faith can do!
    Even if you fall sometimes
    You will have the strength to rise

    We are praying for Lucy every day. Thank you for posting how we can specifically pray for her each day. And if there is anything that we can specifically pray for YOU or your husband or kids, we want to know that too. :)

    ReplyDelete
  13. i.m writing and praying from italy... go lucy go!

    ReplyDelete
  14. Kate found your blog through a friend of a friend and have been truly moved! My heart goes out to you and your family! My middle son who is now almost 8 spent some time in Detroit Childrens Hospital when he wad 20 months. We thought he had the stomach bug which in fact he had been infected with ecoli and his kidneys had shut down so after going through 2 hospitals and only a 12 hour period we were in surgery so that he could be put on dialysis! Instead of getting better his heart shut down and his lungs collapsed! After being on a ventilator, dialysis and a 30 day stay in the PICU he peed his way out of the hospital! He is 100 percent healthy today! I can't say enough about those doctors and nurses! For 2 nights after he coded they were telling us he wouldn't mak it through the night and he did! But as you just wrote you will look at things differently! We have 3 kids as well and every time one throws up I still panic ad always will! Stay strong! Michigan will be praying for you!

    ReplyDelete
  15. Kate,
    We continue to pray for you all daily. I know your life will be forever changed by this but I want you to know that because you guys are touching so many lives that we will all be forever changed as well. You have shown us all that we can't take one second with our children for granted and we must savor each day we have here with them. Please don't fret over Lucy's hair falling out. It's just hair and I promise that after a few days it will lose it's importance . "Hair or no hair, we don't care!" (Jake's slogan) We just want Lucy to fight and beat this cancer. Lots of love to you all!!!

    ReplyDelete
  16. I'm writing from Finland.
    I, too, will pray for Lucy to get well.

    I was an exchange student in Covington in '82-83 and lived with the Curtis family (Nita & Alton). I got a message from Nita telling about your blog and I, too, follow it now.

    I know it is not much but I will do my part in praying for Lucy.

    (The word to pray for Lucy is spreading all the way in Skandinavia, too, as I will let some friends over in Sweden that were in Covington the same year know about your blog.)

    ReplyDelete
  17. Praying!!! With much, much love and hope!

    ReplyDelete
  18. Our family is praying for sweet Lucy and your family.

    ReplyDelete
  19. Hi Kate,
    I saw your blog button on Barbie's blog My Freshly Brewed Life and came over. I have taken you button and will pray for your sweet Lucy.

    I am so sad for your family. I will be praying and praying.

    <><

    ReplyDelete
  20. WOW Kate......God is so working through you! What an amazing post...Still praying...still believing that one day you will be bouncing little Lucy's babies on your knee!
    God is so awesome!!

    Judy in Covington

    ReplyDelete
  21. Wow, that post moved me to tears. You and your family are SUCH an inspiration to so many people! Thank you for writing that, I needed to hear it. I am going to try to stop sweating the small stuff from now on. Whether you realize it or not, you are teaching so many of us valuable life lessons. Maybe that is what the whole purpose of this was for. I pray for you and Lucy and your whole family daily. God bless you all.

    ReplyDelete
  22. I'm praying for your sweet Lucy and your family. Your post was very emotional to me. I must say it is easy to get caught up in things that are not really important, and I am guilty of it. The cutest clothes and best shoes don't matter much if your childs health is suffering. Thanks for that reminder. I pray you'll continue to get stronger as you travel this journey. I pray the lord will continue to comfort and strenghten you, your husband and Lucy. Also your children at home who are missing all of you so much, I'm sure. I beleive in miracles and I hope Miss Lucy gets one. God is able. Thinking and praying for you daily here in Alabama.

    ReplyDelete
  23. Kate you and your family have been so heavy on my heart since I started following you story. My family will continue our prayers for all of you. Specificlly healing Lucy's back. Yesterday when I picked my 4 year old Emily up from preschool a new Rascal Flatts song came on and sat in my car crying for you! The words are very moving!

    "I Wont' Let Go"

    It’s like a storm
    That cuts a path
    It’s breaks your will
    It feels like that

    You think your lost
    But your not lost on your own
    Your not alone
    I will stand by you
    I will help you through
    When you’ve done all you can do
    If you can’t cope
    I will dry your eyes
    I will fight your fight
    I will hold you tight
    And I wont let go

    It hurts my heart
    To see you cry
    I know it’s dark
    This part of life
    Oh it finds us all
    And we’re too small
    To stop the rain
    Oh but when it rains

    I will stand by you
    I will help you through
    When you’ve done all you can do
    And you can’t cope
    I will dry your eyes
    I will fight your fight
    I will hold you tight

    And I wont let you fall
    Don’t be afraid to fall
    I’m right here to catch you
    I wont let you down
    It wont get you down
    Your gonna make it
    Yea I know you can make it

    Cause I will stand by you
    I will help you through
    When you’ve done all you can do
    And you can’t cope
    And I will dry your eyes
    I will fight your fight
    I will hold you tight
    And I wont let go
    Oh I’m gonna hold you
    And I wont let go
    Wont let you go
    No I wont

    ReplyDelete
  24. Hi i came across your blog from another blog i follow. It breaks my heart as a mother to have to see you go through such a time in your life. i just wanted to let you and lucy your hearts are in my prayers may god heal you both and your family. i wanted to share a poem i have come across about the chosen mothers and i truely believe God hand picks you for a reason your truly a good person and may this help bring a light to your heart. love and prayers Kiley Mesa, Az


    By Erma Bombeck

    Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
    Did you ever wonder how mothers of children with life threatening illnesses are chosen?

    Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.


    “Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

    Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

    “Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”
    “But, does she have patience?” asks the angel.

    “I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

    “I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has it’s own world. She has to make it live in her world an that’s not going to be easy.”

    “But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps -”Selfishness? is that a virtue?”

    God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”

    “And what about her patron Saint?” asks the angel. His pen poised in mid-air. God smiles, “A mirror will suffice.”

    ReplyDelete
  25. My family will be praying for yours. We experienced some of this from the sidelines with a neighbor who had a heart transplant at 6 months of age - her mother has found a 'new normal' in the past 4 years, but she also keeps a network of families/moms who have been where she is. You will, too. And you, too, will have a 'new normal' someday - but you will have an amazing story to tell the world, as well.

    May God smile on you, grant you the peace only He can give, and cover you all with His love and healing.

    ReplyDelete
  26. Even though I have never met you or your sweet family, I feel like I am beginning to know you. I have been following your post since a friend of mine asked friends on facebook to pray for your precious daughter Lucy. I am a Mom of 4 children and my biggest fear has always been something happening to one of them. I wanted to share a small part of my devotion that I read with you ...
    There may be times in our lives when we cry, "Where are you God? Don't you care what is happening to me? I can't hear You. I can't see Your hand working in my life." But be assured of this. Even when we can't sense God's presence, He is always there. Always. And through it all, one thing remains the same - "His love endures forever!"
    Praying for you, Lucy and your family daily!

    ReplyDelete
  27. I continue to pray for you and your family. You often come to my mind while I'm driving back and forth from work and I lift you up. May God provide you the strength you need for each day.

    ReplyDelete
  28. Hi Kate,
    I just know things will begin to move in the right direction soon. I don't understand why Lucy needs to endure this when God could just miraculously heal her. I know that his will is not always our will. I struggle with accepting this, even in my own life. But, in the face of confusion and feelings of abandonment, do we turn from God? No, we lean on him a little more. I love how you have done this. So many peple have no idea that they have him to turn to. I believe that if we pray and seek him first that he will be there when we call upon him and part of praying is listening. This is where "being still" comes in play. We often wonder, Where is God? Has he left me? Why? We are too busy talking, when we should be listening, waiting and trusting. I admire your faith and willingness to be still. If we listen, we will hear his voice, in some form or another. God is with Lucy. He has never left her side. You have so many people praying for Lucy and your family. I know there will be days when you are low and doubt may creep in. That's ok. We are here to believe for you. I trust that God will honor his word.
    Pleaes tell Lucy that we are talking to our
    savior every day and night, just for her. Our
    bedtime prayer also consists of our little Evan(2.5yrs)asking the Lord, in Jesus' name to help Lucy(Wucy). There's no way God can not honor his plea.
    Hoping to hear some good news and that Lucys' treatment has been expidited due to her amazing progress!!!
    Love, Krystena

    ReplyDelete
  29. I read your post daily and I pray daily for Lucy and your family. You are living every mothers nightmare and my heart breaks for you. I honestly can not imagine what you are going through and I pray I never have to know.
    Your family is in my families thoughts and prayers. Hugs to all of you..
    (I did post your link on my blog)

    ReplyDelete
  30. Kate, Erik, brave Lucy and beautifuls Ella and Jack:

    I'm so glad to hear that you had a good day, you really deserve it.

    I was so thrilled when I read that nothing was going to be the same for you, please be sure that Lucy is giving all of us a big lesson, that we'll never forget. I don't know her, but I think in her a lot, and pray for her everytime.

    All her family (you and your husband, your babies) are a big example of courage. Kate, you teach us a lesson aboute love every post.

    I hope everything go well. I hope you can have a good day tomorrow, and everytime.

    You, my dear family, are everytime in my mind, and every nigth in my prayers.

    God bless you

    A big hug, for everybody,with love from Uruguay!

    Pilar,

    ReplyDelete
  31. Love from Coppell, Texas. Prayer galore. I added Lucy's button to my blog today. Will pray for you all everytime I see it! Thanks for the great updates.

    ReplyDelete
  32. I stumbled across your blog and was immediately drawn to it and have been following for some time now. I have been grieving for you & your family because I can understand a lot of what you are going through. You see, we stood beside our daughter when she was diagnosed with neuroblastoma at the age of 2 yrs and we watched her struggle through such harsh treatments to save her life. I have not posted before because the outcome was that we lost our daughter, but please don't lose courage. You have to be strong for your daughter!! I can remember so well leaving the hospital at times when I HAD to do some shopping and watching healthy children play while my baby was lying in the hospital fighting for her life!! You are right, your family will never be the same, but you will appreciate life in a new way. You will cherish your children in a new way, you will be grateful for times that your whole family is able to be together. You see, it seems like the little things, but it is the things that truly matter. You can rely on a higher power that will be your strength in the coming days!! We will always be thinking & praying for your family!!!

    ReplyDelete
  33. We found your blog via Julie on our homeschool website, and I want you to know that we are lifting Lucy up everyday, as well as you and the rest of your family.

    Thank you God, for your mercy today on the Krull family, and send your angels to protect them. Send countless healing their way, and over all those sharing this journey with them. Amen!

    ReplyDelete
  34. My friend cassie showed me this blog and I have followed it from the first post. I am a radiation therapist at a local hospital here in Memphis and I worked at St Jude for 4 months while another therapist was on leave. Let me tell you that the therapist LOVE their job, as do I, and will love your Lucy! They will give her nothing but the best treatment!! Your family will be in the best hands with some of the best doctors. Oh and Amy, the radiation therapy child life specialist, is fantastic. I hope that y'all get to to St. Jude soon and I will be praying for your sweet little girl

    ReplyDelete
  35. Kate:

    I eagerly wait each day to hear of Lucy's progress. I feel a special kinship to LeBonheur's, I was a patient there many years ago for a kidney ailment. That experience led me to choose medicine as a profession, and i became a nurse. Do not berate yourself for showing your emotions. They are normal. This is your new reality and it is difficult to accept. Don't be so hard on yourself. Just take it one day at a time. I will continue to pray for Lucy and your family.

    ReplyDelete
  36. Kate, I've been following your blog since Sarah posted a link on her blog. I grew up with Sarah in Missouri. When I added you to our prayers at church, I discovered that Kim and Andrea also knew your family. Ran into someone at Hobby Lobby with a Lucy ribbon. Small world. Lucy is well known!

    Our oldest daughters (9 & 6), husband and myself pray for your family daily. When I read your blog for your request, I pray for it immediately. The power of prayer is AMAZING. Just remember to never say "but" because God doesn't do "buts." : ) Stay strong and know that God's grace and mercy is with you all.

    ReplyDelete
  37. Kate-your strength amazes me everday! Kirk and I say everyday, we don't think we could handle what you guys are going through. I pray every night that God fills Lucy's body with an abundance of peace and JOY for the upcoming day. Reading your blog brought back memories of when I was diagnosed with MS. I remember sitting in that doctors office having thoughts run through my mind about how my life was changing. At 23 years old....No children, medication to be taken through a shot every week, being physically disabled. It's a lot to take in. I remember looking at people thinking " I bet they don't have anything wrong with them". I questioned WHY? WHY me? Well without MS, I would not know Ema. That alone is enough for me. Now I ask WHY NOT me. MS is nothing compared to what you are going through and I cannot imagine it being my child but Kate, GOD will see you through this. This CANCER is not Lucy's. Give it to God! Nothing is too big for him. I pray believing that God is going to heal her and that she will be "normal" again. We love you and are praying!

    ReplyDelete
  38. I am praying for Lucy, you, and your family every day. As a fellow Mom, my heart is so heavy for you. And, I am just in awe of you. I don't know why sweet Lucy and your family is having to endure this suffering, but because I know God's word is true, I KNOW His promises are TRUE.

    Romans 8:28
    And we know that in ALL things God works for the good of those who love Him, who have been called according to His purpose.

    I'm praying for healing, strength, happiness, patience, protection, endurance, perseverance...the list goes on.

    ReplyDelete