Moments that Sustain

Yesterday I cried (a lot).  3 kids and 3 sets of activities.  Homework, dinner, laundry, more homework.  I'm too busy, but not any busier than you dear reader.  

Some days it's just hard to move forward.  

Today as I drove to Memphis for a special meeting at St. Jude I scolded myself for agreeing to be on a council that I honestly didn't have time for.  It was a huge honor to be asked and not just anyone gets this distinction.  Erik and I discussed it and we agreed it was the right thing to do.  Still, this morning I was all but mad I had to go.  

I want to shared with you the letter I wrote to the director when I got home:

    " My daughter, Lucy, is the reason we came to St. Jude.  She is 9 now and its been 4 years since her diagnosis.  She has recently been having severe digestive issues and we have been struggling to get the answers we need.  After seeing several doctors she has finally been diagnosed with GI migraines.  The solution is a low dose of Amitriptyline.  

Today during the pharmacy talk on the genetics program this very drug was discussed.  As they were talking, my memory was searching through the past letters I had received from the study.  When I got home I realized my hunches were correct.  Lucy was one of the 16% percent who is considered an ultra-rapid metabolizer for the drug.  

If I had not been there today I would have never remembered to check the letters that had been sent to me.  She would have been taking medicine that was ineffective and still suffering through the migraines....."  

I know it might not seem like much but this God whisper, this God affirming interaction, reassured me that God will continue to sustain me on even the hardest of days.  I needed to be reminded that my life will never fit the normal ideal of a stay-at-home mom.  My job description is different than I ever imagined it would be.  Whether its splitting my time between XC matches, soccer games and swim meets or going to meetings at the hospital where I hear about future protocols that may one day save Lucy's life.  

That incredibly busy day yesterday saw two amazing moments that I have to share.  First, Lucy participated in her first golf match.  She had so much fun and even asked to go back today.  It's such a wonderful gift watching her play.  She's not the strongest on the course but she is steady and consistent.  Besides, she's super cute in her little skirt.  

At the same time (thank goodness for grandparents), an hour away, Ella was setting personal bests at her XC meet.  She placed 14th (adjusted time accounted last night) out of 160.  I was so nervous before she ran I almost got sick.  When she runs I thank God for the health legs and lungs she was given.  

Although I am going to bed tonight with a tired body I am sure to wake up with a renewed spirit.  I was brought out of a dark place today I am very thankful.  Had I not listened and been willing to step out in faith I would have missed a very important revelation.  Sometimes our moments and days may not make sense but I choose to believe they are all necessary pieces of an amazing puzzle God is creating with our lives.  

 

Grace-It's That Simple

The last 4 years have been nothing it not a long season of self reflection.  There is still so much I don't understand and there are so many questions to which I don't have answers.  I've spent lots of time talking to God, yelling at God, doubting God and then falling flat on my face totally in awe of grace.  

One thing I can say for sure is I never once asked "Why me."  Now, lots of times I asked "why Lucy," but never "why me."  I guess a part of me always struggled with my relationship with God enough that I just assumed I deserved something like this to happen.  I never was able to live up to the self-imposed ideal of what a God-fearing, Bible-believing Christian should look like.  Isn't it funny how we create these images of what God wants when really all we have to do is ask Him?

I have yet to find the Bible verse that mandates we be in church every single time the door is open.  I can't seem to find the verse that says you are forbidden from drinking alcohol.  I'm still looking for that verse that says my sins are greater than yours.  Funny how there seems to be no "formula" for salvation.  Seriously, people.  It's not that hard.  Why do we make God's love and mercy so darn unattainable?

Here is what I've figured out.  I am a sinner.  Yep (jaw drop) every.  single.  day.

You know what else?  Every day I find a bit of God's mercy just dripping down on me like a summer shower.  It is glorious.  And it's enough to get me through the next day, when I am more than confident I will fall in utter disgrace once again.  This grace thing.  You should find it.  And then when you do, why don't you try to live it.  I promise you won't be disappointed.

So, how does this relate to Lucy and cancer and my life now?  I won't pretend to understand why Lucy got cancer.  Honestly, it still hurts my heart to think about it.  I'm sure, though, that if she hadn't I would have continued on with life so unaware of real people and real problems and would have been continually frustrated trying to live out my very disjointed relationship with Christ.  Through cancer I was able to come face to face with the fact that there was nothing I could do or not do to deserve God's grace.  The relationship I was striving so hard to create was always there for me since the beginning of my life.  Faith is all it took.  The same faith that allowed me to place my child in God's hands is the same faith that grants us eternal life through Christ.

I am completely convinced that if we all walked through life with a little more propensity for love we would be much happier people.  Why don't we try it?  Let's be a little less critical, a little less judgmental and let's be a little slower to anger.  Today I allowed myself to be disappointed and hurt by my frustration with some issues in my town.  Why do we work so hard to keep each other down?  I can sincerely be happy for you--your successes makes me proud for you.  And your failures, well they make me sad.  I promise I won't kick you when you are down.

I found myself saying "I just don't understand" one too many times today.  It's got to stop.  I know this is crazy talk, but what if we tried?  Even for a week!  Let's give it a shot.  I can promise you this, being a person of forgiveness, grace and happiness is NOT going to hurt you.  You have nothing to lose.

For it is by GRACE that you have been saved..nothing you did got you God's favor.  You can't earn it, you can't demand it and you can't guilt Him into it.  If that doesn't for God then why do we expect it from our friends, our family or our children?

God's grace is sufficient for me.  Is it for you?

St. Jude Tests and a Hike

You see, this is what happens.  When I finally get ready to start blogging again--life.  It always seems to sneak up on me-BAM!  School starts in 2 weeks (crazy, I know) so we are cramming in two last minute trips out of town and several trips to St. Jude.

Lucy update: Lucy is having some testing done over the next few weeks to determine why she isn't responding to her growth hormone injections.  When they test her IGF1 levels she appears to be responding well, but there is no direct correlation to actual growth.  As usual, Lucy remains an anomaly in certain health issues.  While I am trusting fully that God's hand is on this situation I would be lying if I said I wasn't worried.  As my friend said today "sitting in God's waiting room is a lonely place to be."  He is right.

I also want to ask that you pray for our friend Mason.  Doctors have told his parents that he is in his last days.  He's 10 and fighting for every single day.  My heart is broken for his parents, especially his mother.  She has become a dear friend.  As I write about my summer adventures she is preparing the eulogy for her son's funeral.  There is nothing right about anything in that sentence.  It's hard to know what to say to her.  She knows that I have been there with Lucy--but Lucy got better.  Lucy was healed.  How can I even begin to relate to what she is feeling?  The survivor's guilt is almost more than I can bare when I speak with her.  If you read this Monica--I love you.  I'm praying for you.  I wish I could do more.

This past Spring we took Ella to East Tennessee for a soccer tournament and while we were there we visited a lovely state park called Cumming Falls.  It was a nice 1.5 mile hike that dumped us out at the base of a beautiful waterfall.

 

It was fairly chilly outside but I couldn't keep Jack out of the water.  Thankfully we had dry clothes along!

I am thankful for every day that I have with these beautiful children.  Every day I am reminded that each day is a gift.  For that I am thankful.

All is Well, Sort Of

Isn't it interesting that the very thing that brought me peace for so long now brings upon intense anxiety?  This computer screen was an escape and therapy on so many sleepless nights and burdensome days while Lucy was sick.  The things I couldn't say, I could write.  I found so much comfort at the keyboard.



Even before Lucy was sick I couldn't wait to get on this page and write about our daily adventures.  Even when those "adventures" never saw us leave our yard, there was always a reason to write.  This was my scrapbook, my journal.



I haven't blogged in a while and I'm honestly doing so tonight through clenched fists.  The pages of the last few months remain blank.  I have so many pictures, so many memories to share, so many words to write--yet I can't.   The passion isn't gone.  It's a physical sickness that is stopping me.



To those of you who have sent me emails, I want you to know that all is well in the Krull house.  The kids are enjoying summer and both girls are on swim team.  VBS is this week and we are going to the beach next week.  It will be a well deserved vacation.



I want to write again.  I want to find the freedom that my fingers knew once more.  Even opening the Blogger page was an anxiety-riddeled exercise.  I don't quite understand why I can't do it.  Why has the peace associated with writing escaped me?  Even if no one ever read this page again, I want to write.  I want to be here.  I want this to be my heart once more.



I'm praying and asking God to help me work through this.  I know it's all part of the grieving process but I'm ready to move on.  Working all those details out still has me on bended knee.



I wanted to share this testimonial with you guys.  We've told our story a million times.  I've listened to Lucy's hell retold by countless scribes.  But this one.  As I watched this video I couldn't breathe.  Maybe it was Dr. Boop speaking.  I'm not sure.  I can tell you that every bit of it was from the heart.

Go Lucy Go Race

If you've wondered where the Krull family has been for the past few weeks, we've been up to our eyeballs in race planning.  It's been a lot of work, but oh!  This year's race is going to be amazing---the best one yet!  Not only is this our 5th anniversary, but we have also added a 10k.  To date there are 695 participants registered.  Will you please help us reach our goal of 800?

This year everyone who participates in the race will get a FREE hamburger or hotdog, chips and a drink.  Not to mention a grab bag of race goodies and a commemorative race cup!

Most importantly, we are raising money for a great cause.  The Go Lucy Go Foundation supports the efforts of LeBonheur Children's Hospital through various avenues.  Hot meals, food pantry, clothes closet, the Ladybug Library and nurse education.  I want to share a few pictures with you of some recent additions to the Child Life department on the 7th floor.  The 7th floor of LeBonheur houses the Neuroscience Institute, where Lucy spent all of her time when she was there.

This is the new teaching doll that the Go Lucy Go Foundation purchased.  This $3500 doll is interactive, allowing doctors, nurses and child life specialists to show children about their illness and upcoming surgery.  I can't tell you how helpful this doll was for Lucy before her craniotomy.

Also this year, the Go Lucy Go Foundation purchased an iPad cart filled with 25 iPads.  Kids are able to check these out and use them in their rooms.  They can be used for keeping up with homework, medical education or just plain FUN!  Every kids needs a distraction when they are in the hospital.

And here is the project near and dear to my heart.  As I have said so many times before that we read books on a daily basis when Lucy was in the hospital.  Providing these books for the children of the 7th floor brings such joy to our hearts.  The books are donated with the assumption that children are going to want to take them home.  Nothing makes us happier than knowing a book that brought joy to a child while he or she was sick will also bring happiness at home.

Because of you, families of brain tumor patients and children with Epilepsy are being cared for every single day.  If you haven't registered, don't wait.  The deadline to register for this year's race is drawing near.  This Wednesday, April 15th at MIDNIGHT the online registration will close.  For those of you who want to support the Foundation as a Spirit Runner, this will be your last day to sign up.  Shirts will be mailed to you the week after the race.

Race registration will be available the day of the race for an additional charge.  Go online now and help support the work of the Go Lucy Go Foundation.  Register at www.golucygo.org