Louie’s Story

Site created on February 14, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Kristy Schneider

1,440.  That is the number of minutes in a day.  In one 24 hour period of time we have 1,440 minutes to form, to shape, to choose what is important.  1,440 seems like such a big number.  Yet, we blink and the day is over...and we often find ourselves laying in bed trying to figure out where the day went.  

Today for me was a super busy day...well...when you have four kids, most days are pretty busy!  Today I proceeded through my to do list without much thought.  I taught my girls a few things, got everyone to their school or appointments on time.  I squeezed in a quick run to the library.  Collected my children from their various daily adventures.  Kissed my husband when he made it home from work.  Then fed everyone, ran a quick errand, and looked forward to a quiet evening.  

By 6:30pm, the evening routine was in motion.  Children were getting dressed for bed.  Homework was getting completed.  I was in the midst of giving medication and tucking Louie in for the night.  That is when I noticed it.  

Louie has a number of dressings covering various tubes or things on his body.  There are a few of them that are very important - like life or death important.  Earlier in the day he had messed with one of the really important dressings because he said it itched.  I had reminded him of how important it was to leave it alone.  As I was putting him to bed, it was evident that he had done so again...but this time much worse. 

Ugh...  My heart sunk and immediately I felt the emotion rise.  It was that moment where you don't know if you want to scream or to cry but something is about to come out...the emotion is too big to hold back.  We have all been there.  Do you allow the disappointment to turn to sadness or to anger?  Oh how anger and sadness are such close relatives when the lump forms in your throat.  

For me...today...in that moment...what came next was I raised my voice.  I told him among other things, that I was disappointed in him for messing with the dressing which can really hurt him.  I let the anger come out of my mouth.  It was anger directed appropriately and righteously justified and certainly within the bounds of a safe expression of anger...but it was still anger.  It was still rooted in sadness.  It was still seeping out from layers of fear.  

The truth is that if I was walking out the depths of my faith, that moment would have looked different.  If I was surrendering daily to the fact that God has this plan lined out for us, and He is totally and completely in control, then the anger would have been replaced by loving grace.  But the truth is I struggle, sometimes on a daily basis, to stay completely rooted in that surrender.  In other words, I totally and wholeheartedly believe that God has Louie's life and our family in His hands.  He is the author of life.  He is the perfector of our faith.  God is in control always.  He never allows a minute of the 1,440 in a day to pass without knowing it thoroughly and dictating it entirely.  Yet, His love allows our will to decide how fully we surrender our hearts in the moments when we are pressed...when things are hard...when they don't go as planned...when we are exhausted or overwhelmed...

However, when we surrender, we can respond not out of the big-ness of our human emotions, but out of the fruit of the spirit inside of us.  We can offer a response that is congruent with HIM even when the lump is in the throat...and the anger threatens to release...and the tears are filling the eyes.  We don't have to allow our emotions to control us.  We can instead allow truth and peace and love to overtake.  It doesn't happen easily, but with a surrendered spirit, it is possible.  It is beautiful.  It should be the God-honoring goal for each of us.  

Back to side of Louie's bed.  I let out my words of anger.  I roughly pull out medical supplies I needed from drawers - shutting them a little harder than necessary.  I let the lump rise in my throat as I did.  Then I paused next to his bed knowing this is not who I want to be.  At that moment, Louie reached his arm towards me.  I am still angry but I allow his hand to pull my head towards his.  He kisses my cheek.  And I surrender.  

Lord I surrender.  I confessed to Louie that I was wrong for being so upset and was so sorry for raising my voice.  I sat in bed with him, my head touching his, and prayed for God to forgive me and heal my unbelief.  I asked God to help me to trust Him so fully that when the lump rises and the choice between sadness and anger threatens, that I will have the courage to look up and see the third option...God's hand reaching down extending grace.  Grace to me and grace to whoever else is involved in that moment.  Grace that is greater than all my sin...and their sin.  Grace that commands the moment and brings hope and perspective even in the storm.

In the end, from the outside looking in, I had a busy, but good day.  1,435 minutes were pretty good...productive...lived without regret...and filled with moments of knowing that I am immensely blessed.  Then there were 5 minutes.  5 minutes I wish I could get back.  5 minutes that threaten to define my day.  The kind of 5 minutes I often lay in bed at night redoing over and over again in my mind. 

Tonight I want to lay in bed having surrendered completely to God's grace.  Grace that doesn't take back the words I spoke in anger, but offers full and total forgiveness for them.  Grace that doesn't mask the anger, but grace that erradicates it with the freedom that comes in trusting in the death of Jesus on the cross as enough to cover my sin.  Maybe instead of wishing for the 5 minutes back, I should surrender to the idea of 5 more minutes with Jesus tomorrow.  Maybe if I surrender more intentionally, tomorrow will be filled with greater patience, deeper joy, and lasting hope...not that circumstances are magically different; but that in surrender, 1,440 minutes of the day can be lived in grace...and grace doesn't return void...especially when the grace God is longing for you to offer is towards yourself.  
Patients and caregivers love hearing from you; add a comment to show your support.
Can you help power Louie's site?

A $30 donation powers a site like Louie's for one month. Help keep CaringBridge online for them and for you.

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Tasks
SVG_Icons_Back_To_Top
Top