Going the Distance – 80+ miles!

IMG_0757This month we are having a lot of “this time last year” moments. They really started in February with, “This time last year we took Little to the ER and got her diagnosis.” Little went to the ER two days before her birthday and actually turned 14 in the cardiac unit. A nurse we grew to love over the next five months spent time drawing and cutting so that when our daughter woke up there were decorations all around her room that had appeared over night! Claire continued to care for Little through many nights and was actually our nurse the night before Little crashed and returned to the ICU to stay until a heart became available.

37607861_10155702600410998_3142075362242985984_oLast month I received a call from Children’s Hospital and was told that during this year’s fundraiser, (a two-day bike ride where sponsored nurses and doctors cover over 80 miles to raise money for the hospital) Claire had chosen to ride with the Cardiac team and wanted to honor Little as she rode. She’ll wear a picture of Little on her shirt and has written a lovely “blurb” about our girl and put it on her fundraising page. We will get to travel up the mountain to be present and celebrate with Claire when she crosses the finish line.  What a joy to be able to encourage her as she was such an encouragement to us during our hospital stay.

37602491_10155702600735998_1556608607494078464_oThe Courage Classic is July 20-21 and Claire has the goal of raising $1000 for the Cardiac Climbers (Heart Institute Riding Team). She is halfway there and I am hoping our friends and family will help her get the rest of the way and beyond. So many have given so much to us already but the thought of giving  so that other families can see their children as healthy as our Little is exciting.

 

Click here to go to Claire’s page, read her description of Little, and find out more about the Courage Classic. If you are able, there’s a place for you to donate too.

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Little on the Court

After a year of praying for Little and watching her have NO ENERGY, she is now playing basketball. This is the first year her middle school is doing Unified Basketball – a program  that partners with Special Olympics for sporting opportunities in schools. Teams are made up of 50% kids with disabilities/ASD and 50% typical classmates. (Little’s team is more of a 30/70 split because of all the “typical kids” who wanted to participate!)

To see her run up and down the court is overwhelming.
To hear her classmates cheering for her is moving.

When you watch the video make sure you hear her thank the ref for handing her the ball! And watch the gentleman behind her in the red shirt when she scores. That is one of the Assistant Principals. Watching him brought me to tears.

 

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Heard at our House

At one point this morning our kids were yelling at each other from upstairs to downstairs….

Little, “I deserve to have that egg and you don’t!!”

Bubba, “I deserve hell.”

KB, “and death!!!”

This morning was proof-positive that Kicklighters Need Jesus.

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God’s Word – My/God’s Plan

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Since I was young I have been taught to hold God’s Word in the highest regard. My daddy, a preacher, was often heard to begin a sermon, “I do not apologize for reading from God’s Word. It does not contain God’s Word, it does not become God’s Word, it IS God’s Word. And when we hear God’s Word we should pay close attention.” It was in this context that I was taught to study God’s Word and the value of spending time in it each day.  When I went off to college and truly began to “own” my personal walk with our Lord, I quickly learned that having a plan was integral to consistent time in His Word. Whether it was working through Kay Arthur’s plan for studying Jude or going through Philippians verse by verse it was more likely to happen if I had a plan to work and a journal to write in.

 

The year before I had providentially stumbled across Rachel Wojnarowski’s  blog while searching “Bible Reading Plans” on Pinterest. I clicked through and once I saw pictures of her precious daughter and read a bit of her story I was convinced the Lord had placed the link in my feed. Our stories are very different but Rachel’s first-born had special needs and she had walked roads that made her feel like a kindred spirit. I didn’t reach out to her at that time but printed her monthly reading plan and glued it into my journal.  I didn’t think much else about it until I was faced with Little’s Big Heart and the truth that she might soon go to be with Jesus.

IMG_3614.jpgI had just finished a Bible study with some girlfriends and our visits to the hospital were becoming more regular.  By April the length of our visits were growing and though I kept my Bible with me I didn’t have the energy or presence of mind to know just where to read and find comfort. Many dear friends and kind strangers sent me verses they personally found comforting and they soothed my soul but I knew I needed to be in His Word more consistently if I was going to survive … so I turned to Pinterest! I mean isn’t that what you were expecting me to do? I purposely searched to find the link to Rachel’s blog and then I looked and found her plan for April. It “just happened” to be built around the theme of “Soul Secure – Winning Over Worry.” I printed it out and taped it into my journal.

We spent three weeks of May in Children’s and so I searched for Rachel’s plan for May. When I saw it was curated around the theme “Confident Trust – Believing God’s Plan is Best,” I printed it out and taped it into my journal.

At the end of May Little was put on the transplant list and I went straight to RachelWojo.com and printed out the plan for June: “Perfect Peace.”

By the end of June I was growing weary and teary and printed out the July plan from the wrong year!! I didn’t even realize it was the wrong month until I sat down to write this post!!! Turns out the Lord had directed my clicks and I providentially printed “Purposeful Pause – Waiting On God’s Perfect Timing” and taped it into my journal.

Are you getting this??? Do you see this way our Father showed He knew my needs?

Then Little’s heart gave out at the end of July and God provided a new heart for her in the last hour. We were discharged eleven days later andi f I am honest I must admit that my fears then increased exponentially.  Once again it seemed our personal and loving Father had gone ahead and planned to use a stranger/sister-in-Christ and the reading plans she had created to sustain me:

August: Magnificent Power – Recognizing God is Bigger Than Anything
September – Never Alone – Remembering God is With Me
October – No Fear
November – With Thanks

2018 ended with our Little doing so well, the family adjusting much better than I anticipated, and  my relationship with my Heavenly Father deeper and stronger than I could have imagined; His words to me were present because I had a plan to follow.

2019 has found me systematically and compulsively cleaning out room by room. (A consequence of living for months in a small space with only a suitcase of belongings!)  And while my laundry game is STILL off (just can’t get back into a rhythm), I do have a new plan for being in God’s word this year. (This post is already too long so I will have to write about this year’s plan another time.)

***I remember going to my daddy’s office while on a college break for the specific purpose of asking him about HIS plan for personal study. I knew His view of God’s Word but couldn’t ever remember seeing him doing personal devotions. He shared with me his specific plan and it was both encouraging and freeing to see just how different his plan was from anything I would ever do. It made me want to know what kinds of plans other folks in my life use. Would you be willing to comment and share?***

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Jesus Is Alive

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Wish that I was there
On that silent night
When your tiny heart started beating for mine

I wish I could have seen
The star in David’s town
When you turned a stable into a Holy ground
I sing along, the angel’s song

Noel, Noel, Jesus is alive
Emanuel, hope is here tonight
So go, and tell, the world that death has died
‘Cause Jesus is alive, yeah Jesus is alive

The God who made us all
With these two little hands
Is bringing us his kingdom
Quiet as a lamb

Oh such Amazing Grace
A divine conspiracy
This Savior in a manger changes everything
That’s why we sing

Noel, Noel, Jesus is alive
Emanuel, hope is here tonight
So go, and tell, the world that death has died
‘Cause Jesus is alive, yeah Jesus is alive

Sin you have no sting
Hell you have no power 
Curse you are no more
This is your final hour
Because the son of God
Has not left us alone 
He’ll live and die and rise again
And then he’ll bring us home 
The old will pass away
And we will become new
This baby boy is making all sad things untrue

Noel, Noel, Jesus is alive
Emanuel, hope is here tonight
So go, and tell, the world that death has died

Noel, Noel, Jesus is alive (Jesus is alive)
Emanuel, hope is here tonight (Jesus is alive)
So go, and tell, the world that death has died
‘Cause Jesus is alive, yeah Jesus is alive
Yeah Jesus is alive

Jesus is alive

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Thankful Thanksgiving

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Starting with a song on this post!
Veggie Tales “Thanksgiving Song”:

“Because a thankful heart is a happy heart!
I’m glad for what I have,
That’s an easy way to start!
For the love that He shares,
‘Cause He listens to my prayers,
That’s why I say thanks every day!”

Yesterday I experienced a Thanksgiving first.
No, not the first time to watch the parade.
Obviously not the first time for turkey.
Not my first apple pie.
Nope. None of those things.
Yesterday I was overwhelmed by Thanksgiving. You know that holiday that our country seems determined to skip over? Well, yesterday it undid me.

I called my mom around 10:30 a.m. to check in and tell her how thankful I am for her (not a first) and she was on her way to my brother’s house. In the course of conversation I started to cry (also, not a first) but the thing was I couldn’t stop. For the next two hours I would pull it together and then something would happen and my eyes would start dripping again.

IMG_3500I did okay while we ate. We laughed and chatted and were really enjoying each other. Then came the time for going around the table and telling three things we are thankful for. Usually it’s like pulling teeth to get folks to think outside the box of “friends, family, toys” but yesterday we couldn’t get people to stop listing things. I was so overwhelmed. It got to where I couldn’t talk through my tears.

Jeremy just started listing off doctors who made life affecting decisions for Little. Little started listing off things she’s been doing around the house … be with KB and Bubba, bake a pumpkin pie, etc. Bubba made a list of his top three electronic devices and when I asked him to please think outside the electronic box he began to sincerely list natural disasters he is thankful we aren’t facing. Our KB was so others-centered in her list that my heart groaned even more. I sobbed through being thankful that we are all together and we all still like each other! And then we gave thanks for the family and friends who crossed the country to help us, those who offered to cross the country to help us, and those who gave financially to help us. It is no secret that our year has been difficult but it’s humbling beyond description to take stock of His great provision for us at every turn.

It was emotional. It was exhausting. It was a good thing we had already bought tickets to see Ralph Breaks the Internet because it was hilarious and we laughed and laughed together then went home to play Scrabble and eat the before mentioned pumpkin dessert.

Now to unpack some of that gratitude for the sake of an update.
Transitioning home has been easier than anticipated. The way the Lord worked the timing was, of course, perfect and several smaller exposures to each other led the way to a smoother time once we moved home. One month in and I feel like I am finally getting an understanding of what is needed to help KB with schooling, what our schedule is going to look like, and how desperately I want to purge our belongings after living in one room with Little for so long!

Little is doing so well. She has so much energy and I am often still surprised by it. She has loved returning to school. Each afternoon she gets off the bus with a smile on her face and starts telling me about her day before she gets the door open. I may have scared the administration to death but they are taking such good care of her and I can’t say enough about their kindness toward our family.

IMG_2768This is our first week without a clinic visit since the transplant; beginning this week we are only going EVERY  OTHER WEEK!! This has allowed us to give some attention to other issues that had to take a back burner while Little’s heart was too weak. We visited the ophthalmologist this week and it seems the cataracts that made an appearance just before Little’s heart diagnosis have grown and are affecting her vision. There is no urgent need for surgery but it is definitely looming in the future. We’ll decide on timing after Little’s heart catheter in January.

Little’s teeth are also in desperate need of attention.  She has two impacted teeth that we have been told for over a year need to come out and she also has a couple of cavities that need attention. Little’s anesthesia will need to be administered by a cardiac anesthesiologist and so there’s some tricky scheduling that needs to come together; we are trusting for surgery and dental care on January 7.

Just because we can start thinking more about other areas of Little’s care doesn’t we aren’t still living the #transplantlife daily.  Little still takes her meds twice a day at exactly 8:00 a.m. and p.m.  There are goals for the levels of medication in her system and we had hit the mark for quite a few weeks but the past month has found one of her medications in a constant downward flux. We have adjusted her prescription and continue to work toward the needed balance.

Now to sum all this up with ways to pray:
1. Pray that Little’s eyesight would be protected and we would have wisdom for the timing and type of care she needs.

2. Pray that scheduling will work out for Little’s dental care. That her teeth can be safely extracted, all cavities can be filled, and all teeth are saved.

3. Pray that Little’s medicine levels will even out and reach the numbers necessary for protecting her heart. Continue to pray against heart rejection and illnesses that her body would struggle to fight with the suppression of her immune system being what it is.

4. Pray for wisdom as we balance Little’s health with caring for our other children. Pray for direction concerning Bubba and KB’s education next year.

5. My CNA test was cancelled again and I am now scheduled to take the state exam on December 5. I started my home healthcare job on Wednesday before Thanksgiving.

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Always Good

I heard this tonight and just had to put it here before I go and download the entire album. Andrew Peterson is such a wonderful writer; his use of words is staggering.

Always Good
Do You remember how Mary was grieving?
How You wept and she fell at Your feet?
If it’s true that You know what I’m feeling
Could it be that You’re weeping with me?

Arise, O Lord, and save me
There’s nowhere else to go

You’re always good, always good
Somehow this sorrow is shaping my heart
Like it should
And You’re always good, always good

It’s so hard to know what You’re doing
So why won’t You tell it all plain?
But You said You’d come back on the third day
And Peter missed it again and again

So maybe the answer surrounds us
And we don’t have eyes to see

You’re always good, always good
This heartache is moving me closer than joy ever could
And You’re always good

[Bridge]
My God, my God, be near me
There’s nowhere else to go
And Lord, if You can hear me
Please help Your child to know

That You’re always good, always good
As we try to believe what is not meant
To be understood
Will You help us to trust Your intentions for us are still good?
‘Cause You laid down Your life and You suffered like I never could

And You’re always good, always good
You’re always good, always good.

by: Andrew Peterson

 

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