Wednesday, September 26, 2012

Happy Birthday, Daddy

   Sometimes I try to think through Clayton's eyes.  I try to remember back to when I was a 7 year old.  What do I remember about that time in my life?  What will Clayton remember? Will he remember everything that he's going through?  Will he smell a hospital and immediately remember his days there?  Will he remember his mother holding him and crying and praying?  Will he remember his Daddy picking him up and carrying him because he felt too crummy to walk?
     So, as I'm thinking back, one thing I know I remember is always having the desire to be a wife and mommy... always daydreaming about who I would marry and what that would be like for me.  I will be honest here.. as I person who grew up with many self esteem issues, I remember vividly wondering if anyone would ever WANT to marry me?  Would I be blessed with a husband?  Well, 41 years ago today, my life's biggest blessing was born in a hospital in Greenville, Tx.  Amazing to think about how at that moment God already knew the plans He had for that little baby boy.  How thankful I am that those plans included me!  I couldnt be more blessed. 
     Chad,  thank you for giving your best to me and our children always... for loving me with your whole heart despite my failures.  Thank you for holding me up when I can't stand... for letting me sob on your shoulder for days...for making me see the positive side of everything...for forgiving me when I don't deserve forgiveness....for being an amazing father...for providing for us... for fighting for our marriage over anything else..and for seeing a beauty in me that I don't see.   Our children are blessed by you, I'm blessed by you, and you bless the Lord in your daily walk.  Couldn't be more thankful for the man who God chose for me.  I love you!  Happy Birthday! Philippians 1:3 " I thank my God everytime I think of you".
      As an update on Clayton.  He's doing great this week.  I can see in his little face that the chemo is taking effect and he's probably pretty low with his blood counts.  But, he has played 2 flag football games, earned 3 dog tags at school for reading MANY books, played nonstop with his brother and is feeling well and fever free.  I'm so very grateful.  He is insisting on coming home after school and wrapping dads gifts and making Dad's birthday cake "By Hisself:)" The only explanation for how he's handling this is God.  I am amazed by the angels that surround him keeping him safe and well and keeping his heart positive.  There is no other explanation, friends.
    I will tell you that we had his hearing tested last week.  He is only having a mild loss in his right ear, which the audiologist believes is temporary because of some fluid on his ear drum.  We are so grateful.  We have been assured that he will probably lose most of his hearing in his right ear due to radiation, but it would happen as he grows.  So far, we are not seeing a huge loss.  Also, he had a follow up with his Kidney surgery (unrelated to cancer).  The tests are not showing that the kidney is functioning completely as it should be.  We have decided that since the Lord gave us two kidneys and he is in no danger, we will cross the kidney bridge after we are done with chemotherapy.  There is no emergency here, and we are told there is no harm to him in waiting to review this in a few months. 
   Thank you to all of you who continue to lift our family up in prayer.  We are forever grateful.  So very very grateful. 

Friday, September 21, 2012

Bearing Their Burdens

Crazy hair day
Tonight I'm writing as I sit here at Cook Children's with Clayton for his 10th round of Big Chemo.. Wow.. after tonight only 4 left.  How exciting to think that we've come this far.  Clayton has had a WONDERFUL round this past time.  He's had a high ANC, great attitude, and has not missed a day of school feeling bad.  He's PUMPED to say the least.  He's reading tons of books insisting that he stay at the top of his class, and he's approached each day with excitement and anticipation of what is to come.  So proud! Please pray that this round of chemo and the future chemos will be as good to him and the one he just finished.  I'm watching him sleep right now as the nurses are preparing to administer his chemo.  Precious little boy!
Caroline, my 7th grade Volleyball player!
I was just thinking  about the job of being a mother.. the gift of being a mother.. the high calling of being a mom...the privilege. Being a mom to four was a big job BEFORE I had a child on a strict chemo regimine, now it's just CRAZY.  It's not easy, and sometimes it even hurts. Moms know what's under those gorgeous smiles, and we hurt for our kids when they hurt. In most cases, we have been there before.  I've been a 12 year old with "friends" who were mean to me just because I didn't say hi in the hall  . I've been a scared 14 year old who walked into a huge new school.  I've been standing in front of a group of people who were counting on me to "get it right" and I didnt... for the most part, I can relate.  However, with Clayton and this chemo, I have NO clue what really goes on in his little heart and mind. I can't relate... and that scares me.  I can relate to the mom next door and the dad down in the family room, but I can't imagine the gut wrenching thoughts that go through Clayton's mind as he approaches the doors of the hospital, as he lays under the loud MRI machine, as he laid with a mask pinned to his face for radiation 28 days straight. I don't understand why certain smells bother him because it "smells that the radiation place".   I CAN'T relate! But, what I do know is that my heart is a little smaller because his hurts have taken a piece of it, just like my heart hurts when Caroline is sad from the  comments friends have made about her and she doesn't understand, or when Cort walks a batter when his team is counting on him for the strike out.  We moms bear ALL our kids burdens, and it's a tough job that I find has gotten harder over the years, not easier.

    Earlier this week, as I was laying awake trying to figure out how I'm going to be at Clayton's flag football game, Cort's out of town Baseball tournament, Kate's dance exhibition and Caroline's out of town volleyball tournament ALL ON THE SAME DAY, and all with one kiddo that will be weak from chemo, I found myself feeling discouraged. I want to be AT ALL of the activities, but it can't be so. Chad and I just can't be at all four places, as much as we both want to. For some reason, in our house whichever activity Mom attends... that child is considered  "the favorite" by his/her siblings.  Yes, talk about pressure. What my kids don't understand is that I go with each of them in my heart, and my mind has no favorites.  They are all four precious gifts to me who I treasure.

     This journey our family has been on is not one I wish to ever repeat.  EVER.. It has really pushed me to my limit as a mom, a wife, a Christian and as a friend.  It's reminded me that I am only one person, one mom who needs Godly friends to help me through.  It has reminded me that being a mom to a child with hurts is a privilege that I must embrace.  I've learned that I can't do it alone. It's made me so grateful for the amazing man and dad that stands with me and beside me everyday helping me keep the ship afloat.  It's made me know that what my mom always told me must be true... "Anything that is worth anything takes effort.. if it doesn't take effort, it's probably not worth it".  I've learned that when that test turned pink telling me the good news of a new baby... it truly meant work.  It meant that my heart would never be the same and my world had changed for the much harder, but better.  It meant bearing their burdens... always!


Wednesday, September 12, 2012

Enduring the Trial...

 This has been a great week for Clayton.  He is at school, which makes him completely happy, and he's feeling well.  His red cells are high enough that he has lots of energy and last time we checked, his white counts were amazing too.  Personally, I think his good days are alot in part because he feels normal.  He feels like a normal kid, going to normal school, reading normal books and being one of the gang.  I'll take it! He's so excited that the next time he has to get poked for anything is 8 days from now!  He's going to have 10 days total with NO pokes! YEAH!  The pictures here are of him LOVING his flag football practices.  He's so happy and loving being the QB and Running back.
   This week, we've been listening to a little song that Clayton has been working on called "He is Good".  I was able to download a kids version that begins with a little child speaking these words, "Nothing makes us want to worship God more than this one thing... He is GOOD! Life can be hard, things are not always fair, bad things happen, but God is ALWAYS ALWAYS Good!"  I had never heard this version before, so the little voice speaking  on the recording touched me... but not nearly like it did Clayton.  As soon as the child finished speaking, I could see the wheels in his brain turning, and with that I hear," Mom... that girl said just what I think. Bad things aren't fair, are they?"  Me-  "No, Baby, they sure aren't, but aren't we thankful that God is good enough to help us through?"  I still see the wheels turning, but I know he's sure of the goodness of God.  I know he feels covered by the love of a God who will NEVER forsake him.
      The past couple of weeks, I've been hearing a lot about trials.  I've read and heard many hard stories of people going through trials, feeling hurts that seem impossible to deal with, and feeling lost in a sea of uncertainty.  I am NO expert.. in fact, I need the trial discussion worse than anyone, so I guess I am going to use this moment to make myself feel better too.
    As I look back on my life, I see many hurts and trials I've experienced... most of them too personal and hurtful to discuss in this public forum.  Just know, I've been down a few roads and felt many things that strangely make me relate to many different people.  As I was walking through each trial separately, I've thought... nothing will ever be worse than THIS.. Well, as you all know, last February my list of "lifetime trials"  got trumped with this BIG experience with my precious child.  My heart broke, my spirit died, my eyes filled with tears and my love for the God who has always helped me up DID NOT CHANGE.  Yep, you read it... Did I question Him.. you betcha!  Did I get mad at him? YEP!  Am I STILL mad sometimes? Sure Am... But He has  always been MY God and I've continued to be able to feel His presence through my agony.
    I honestly dont think that God "Allows us to endure trials".  I just can't believe that, and I've heard many people say "Why would a God who is Good, do this?"  Trust me, I've been there and still am there sometimes... I believe that God doesn't "allow" the trial, but He surrounds us while we're "IN" the trial.  I just can't believe that God "Allows" a child to have cancer or a Christian Man to suddenly fall away from God and leave for another family or A mother to suffer depression severe enough that she sees her life as meaningless and only worth ending or a family to experience the heartbreak of losing their teenager in a car accident, I will just never believe that God would see a child suffer and "allow" it.  But, even with the question of how the trial became and why... the answer being one I may not know until I approach His throne in heaven,  I still know that He gives us the ability to persevere and grow and learn through it.  I am trusting in His promise in James 1:13 " Blessed in the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love Him. "  Let me say for the record, I am NOT thankful for my trial.. I do NOT count it all joy... I am NOT feeling "blessed that the Lord chose Clayton to grow and learn through this".. (yes, this has been said to me).   I'm still mad, still discouraged, still afraid like I've never been before, but somehow I am trying to find God within my circumstance, hand it over to Him (as hard as that is) and trust His goodness to shine in the end.
    The little song "He is Good" also has a child saying this verse very animated in the middle.. I'll share "Psalm 145:8-11... The Lord is GRACIOUS and compassionate, slow to anger  and rich in love.  The Lord is good to ALL.  He has compassion on ALL He has made.  All you have made will praise you, Oh Lord.  Your saints will extol you.  They will tell of the glory of your kingdom... speak of your might."  My hope and prayer is that through all of this and through the experiences that are to come.. that all FOUR of my children would grow up,  know of the Goodness of the Lord,  trust in His hand of healing and protection, and  fully grasp the gift of His faithfulness through all circumstances.  Four healthy kids remembering this moment of God getting us through the trial, and forever being grateful for his Goodness.. That's my prayer.

Tuesday, September 4, 2012

We're Aware...Are you?

 As you may or may not know, the month of September is Childhood Cancer Awareness Month.  If you are anything like I used to be, I used to hear that and think... "Oh Bless their hearts!  Those poor families that have to deal with cancer."  I never thought about how I could help nor did I EVER think I would have to become aware.

  Friends, I AM AWARE in a way that I hope none of you will ever be, and I wish I never was. I was aware as I was on my knees in front of EVERYONE at Texas Children's begging God for no cancer in Clayton's body.  I was aware the moment I signed off to allow my son to have treatments that could cause death, hearing loss, future cancers, blood transfusions, nausea, hair loss, no energy, no immune system.  I am aware when I look at the dark circles under his little eyes, when I hear him cry in his pillow at night, when I see him THRILLED to get out of the car for school because he's allowed to be somewhere.  I'm AWARE. Ask any of my three older children about childhood cancer.  I promise you, down to my 9 year old, they're more than aware too.

 I'm sure most of you have no idea how little funding is really given to childhood cancer research.  It's incredibly discouraging. It's unacceptable and unfair. We need to be aware.

      I spent an hour Friday arguing as a heartsick mother with Clayton's doctor just begging him to tell me there is something besides this awful chemo that will save my son.  Questioning him on how they can NOT know.. in a frustrated moment reminding him that my son is NOT his, so he can't possibly say what he'd do if it were his son.  You see, we were discussing the idea of lowering the dosage of one of Clayton's three chemo drugs.  Some small study is being done now to see if lowering the dose of this particular drug would be successful and still help prevent recurrence.  This is important because this is the main drug that  RAISES Clayton's chances of acquiring leukemia later in life.  So, I was left with two choices, lower Clayton's drug based on a new study and possibly raise his risk of reoccurence, which we've been told is much harder to cure than first time diagnosis, or continue on his current protocol and continue to put his body at risk of leukemia later down the road.  Wow!  Yes, Friends, I'm AWARE! I'm aware that not enough "research" has been done to help our doctor and Chad and me make this decision. I'm aware that there is currently no way to PREVENT cancer.
  I get discouraged at the things we worry about in this country.  I know that politicians, with the help of many American people, will spend tens of millions of dollars on the upcoming presidential election.  Let's be honest, I'd say 95% of us know who we are voting for already, so why all the expense there?  I'm also aware of ridiculous funding our country recently spent on a study of Mars... seriously, Mars is more important that my child's life and the lives of many others?  It's concerning.  Be AWARE.

About a month ago I was sitting at Cook Childrens watching two nurses clad in protective gowns and gloves administering chemo to my baby through his IV .   Just during this time, I was reading conversations all over the social media extentions about who is or is not eating at Chick Fil A and how awful and terrible these people on either side are.  Really?  Does anyone else see that our focus is off here?  It's frustrating to say the least.

    All I would ask you to do is take  part.  Be aware.  Go to Chilis this month.  They are taking donations for St. Judes research hospital. Give a little. Find one of Alex's Lemonade Stands in our local stores.  Give a couple of dollars.  Find a research relay to run in....Run, Walk, or support someone who is.  I'm just asking us all to take part in this.  You never know when it might be your child, your future grandchild, your family.  With four kids, I have the potential to have many grandchildren.  God forbid one of them would ever face this, I'm praying and trusting that our country will have come up with something better then.. Something that could PREVENT this.

    Well, sorry about my soap box.  I don't usually go off on these things, but the Cancer Awareness month makes me excited to hope that we're actually AWARE.  I know the parents of those children who were not as fortunate as Clayton and who have been made whole and healthy in heaven are far too aware. 

    For a Clayton update, he was able to do big chemo on Friday.  He was accompanied by his Daddy.  It went well and he's doing great for having just had his treatment.  He was able to return to school today, and came home happy.  Please continue to pray that his counts stay up for him to go to school and that he feels well.  We so appreciate you all for your love and support to our family and your constant prayers.  We feel them. I added a picture here of what I was doing while Clayton had his big chemo Friday night.  I was able to drive to College Station and watch my beautiful daughter experience her first night dancing as a Goal Tender.  I bawled the majority of the time, so proud of her, thankful for her health, and sad about how fast she is growing up!  Love that Kate!