Journal

Journal entry by Kristy Schneider

You would think that medicine and overall health is pretty straight forward.  You would think that it is black and white.  You would think that a degree or a license covers all you need to know.  You would think that training is enough to close the gaps when the moments of gray arise.  

However, if there is anything I have learned over the past 9 months, it is that the body is so complex that only it's Creator, God Himself, is able to understand the intricacies within each of us.  We are more than just a jumble of cells that have come together.  I have fat thumbs, brown hair, and allergies I wish I could do without.  My girls have blue eyes.  My boys tan instead of burn.  My husband dreams of running to work.  Each of us is unique.  Each of us created purposefully.  Each of us looking like our Maker.  

Louie is no different, yet he is completely different.  His medical file is thicker than most...His list of medical issues is long.  But, the truth remains, Louie was created by God - intentionally.  There was no accident.  So as medicine has struggled to understand his body at times, I have found peace in not having to have the answers because I know I can't change the course God has planned for him.  Instead, I choose to trust and worship a God who loves my son more than I can even fathom.  

AND...I have come to realize that God has also created amazing medical personnel to walk alongside us on this challenging road.  After spending half of the week with Louie in the hospital, it has brought me to reflect on the people who have provided him intricate, complex, routine, intense, and delicate care over the past 9 months.  

We have had some of the best nurses the world has to offer.  People that see beyond medical charts to the needs of a child and the heart of parents struggling to understand.  We have had doctors cry with us.  We have had child life specialists go above and beyond to bring smiles where there is only pain.  We have had an IR team keep us grounded when circumstances were challenging.  We have had medical professionals hold our hands, lift our chins, and provide us care when hope was hard to find. 

There are so many medical folks I could list by name.  So many that have made our journey easier.  So many that have seen us at our worst and still believed in us, in our son, and in hope.  Hospitals and medical journeys can be overwhelming and threaten to consume one's spirit.  They can cause you to doubt yourself and feel like you are a little crazy sometimes - or a lot crazy.  Then there are times when you may not see eye to eye with your medical provider.  Times when you feel wronged or angry at the care, or lack thereof, that you feel you or your loved one has received.  Times that make you question competencies.

After spending so much time immersed in the medical world, I have come to fully believe that in the heart of everyone in the field - even those hard to deal with - there is good.  There is a person.  There is a real person who is fighting their own battles, and walking their own mountains and valleys.  There is a person desiring to make a difference and do what is right even on their hardest days.  There is a person needing grace the same way I do.

So today, I choose to be thankful that Louie has improved and we are home.  But I am also very thankful for the men and women in the medical field who have devoted their lives to caring for others.  Thankful for a path we don't have to walk alone.  Thankful for the answers I don't have to find.  Thankful for people who do really hard things...deal with difficult people...sit with crying families...hug hurting parents when the moment overwhelms...and then they go home to deal with their own stuff.  

Friends, can you join me in offering grace, love, and gratitude to those in the medical profession today?  Can you send a note or text of appreciation?  Can you offer a prayer of protection over them?  Can you see them as people, not perfect, but trying to give their best in hard places?  Can you offer forgiveness not asked for, kindness that may go unseen, and hope that their best will be enough for the needs of those they care for today?  

To all in the medical field who have personally cared for Louie and our family in any way, thank you...from the bottom of my heart...from the depths of my prayers...thank you.  The gift you have given to my family is more than I can repay.  My greatest prayer is that God will give you wisdom for another day...and that you will have the grace to offer back to people and families like ours...people who like you, are trying to navigate this wild journey of life the best they know how.  We need each other.  We need the Lord.  May the gratitude and kindness overtake all differences and give us the courage to press on.  

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Journal entry by Kristy Schneider

This week I have struggled to write.  There is so much I want to say and express, but the hesitations at authenticity have been numerous.  I want to update openly about Louie and how he is doing medically…about the highs and the lows we have experienced this week.  I want to ask for specific prayers.  I want to be vulnerable about the path forward.  However, if I am honest, I am scared to do so. 

We have moved into a season of long term crisis, which has brought challenges I never anticipated.  The feelings have been big….the road rocky…the judgement real…the background noise threatening to drown out the peace. 

The circumstances we are walking are unique, but I am certain most reading this can relate at some level to the battle for one’s mind and emotions in the hard seasons of life.  The feelings can be so overwhelming.  The thoughts don’t cease to race.  Then to complicate it all, Satan really likes to kick us when we are down.  It is what he does best.  It often serves to paralyze us to the truth.

The past few weeks I have sat in this struggle…a struggle of wanting to be authentic and acknowledge the mountains and the valleys…a struggle of wanting people willing to stand with me on the high places and cry with me in the low places…a struggle in trying to look forward just a few steps with hope…a struggle to trust fully, laugh freely, and give grace completely.

As I have struggled, it is as if my feet have been stuck in cement.  I can’t get traction to move.  The longer I am stuck, the harder it becomes to stand.  The weight increases.  Recently, in desperation, I found myself on my knees very late one night.  As I poured out to the Lord in prayer, one word came flooding in…it penetrated my heart deeply…the word was WORSHIP. 

Music and worship have been a large part of life since becoming a Christian.  I have aided in leading worship through playing instruments (piano or drums) in many seasons of life.  In fact when I look back at each and every pivotal moment in my life over the past 25 years, I can tell you the exact songs that God used to reveal Himself to me or to encourage me…the songs that resonated and brought me hope…the songs that were on repeat day after day after day. 

Music is powerful.  I believe it is powerful because of the way it connects our thoughts to our feelings.  Lyrics can become battle cries, victory dances, anthems of hope, or laments in despair.  Music can bind people and their unique stories together.  Music can articulate feelings in ways our words may fail. 

And then there is worship…a beautiful opportunity for music to connect our heart more deeply to God’s.  Worship is so much more than just music.  What makes worship powerful is not our singing…it’s not whether or not a person raises their hands…it’s not the type of song (hymn vs. contemporary music)…it’s not how talented the worship leaders are…it’s not if you sing loudly or not at all…it’s not  even the words at all.  Worship is powerful because of the interchange that occurs with God as we surrender our heart and our will to His.  When we praise Him without reservation…when we acknowledge Him as God and God alone…when we seek Him in surrender…worship occurs because of who HE is. 

Zephaniah 3:17 says, “The Lord your God is with you, He is mighty to save.  He will take great delight in you; He will quiet you with his love, and rejoice over you with singing.”  Worship is possible only because the God who made the universe is singing back over us.  Imagine that for a moment.  God sings over you…like a parent singing over the baby in their arms…singing comfort and love and emotions far too intense to articulate.  God is quieting our spirit.  He is taking delight in us, not because of what we have done, but because of who He is.  It is the exchange of our surrender and God singing His love over us that makes worship so impacting. 

For me personally, in the past few weeks of struggle, I have failed to worship.  Music has rarely played.  I have sought solitude instead of the Savior.  I know the power of music, but I haven’t initiated it in a while.  I didn’t intentionally take it out of my life…but I also didn’t intentionally seek it.  Life will fill your mind with so much noise that without seeking worship intentionally, it won’t happen.  For me, it wasn’t happening. 

Then a dear college friend of mine posted a song called “My Testimony” that her teenage daughter (Selah Kurtz) had written and recorded.  I wanted to support her, so I downloaded the song.  As it started to play, it was as if I had the wind knocked out of me.  Her voice is captivating but it was the lyrics that spoke deeply to me.  Here is a portion of the song…

“You calm and keep me quiet,
Your love is drowning out the noise.
And the echo of the quiet is sweeping over me,
And the thunder of the silence is speaking your peace.
When my voice is gone,
The storm of your love rages on.
When I cannot sing,
The words you speak bring me to my knees.
Redeemed my heart will sing,
Proclaiming this broken melody.
This is my testimony.”

As the song played, it was as if I realized how loud the noise had been.  I began to long for the quiet…to long for stillness before the Lord…to long for my heart to calm in worship and for God to sing over me. 

As I processed the lyrics, I found myself stuck on the following lines, “And the thunder of the silence is speaking your peace.  When my voice is gone, the storm of your love rages on.”  How can thunder speak peace?  I thought of my little girls and how storms, especially those at night, yield so much fear they run to our bedroom trembling and need our presence to relax…to feel confident…to rest…to sleep in the storm.

In that moment, I realized there are two types of storms.  There are the storms of life that bring destruction and fear.  The storms that leave us trembling, hurting, confused, and anxious.  They are the types of storms that come because we are human and live in a fallen world.  These storms will always threaten our peace and leave wounds.  And often these are the storms we never saw coming.  We went to bed ok, and the next thing you know our world is upside down…the wind, the rain, the lightening so intense we can barely see in front of us.  Then the storm passes but the damage is great and overwhelming.

Our response in these storms can either be to buckle down and tackle it on our own, or to run to Jesus like my little girls in the night.  We can try to hold it together, to be strong, to manage the destruction; or we can sit in the arms of the One who saw the storm coming and sings softly over us….the One who knows the fears and hurts before they are spoken…the one whose presence is comforts in the darkness and He never abandons us.

But there is a second kind of storm that I feel this song is truly talking about.  There is a kind of storm that is orchestrated by God himself to bring healing, cleansing, and calm.  It is the kind of storm that regardless of how hard the season is, there can be peace and hope because the feelings aren’t rooted in things of this earth, they are rooted in a longing for Heaven…they are rooted in Jesus.  It is the kind of storm that pours rain into the desert…rain that drenches the dry soil of our heart with beautiful healing rain.  No judgement for the dryness, only peace that brings hope again…hope that the drought has ended.  It’s the kind of storm that draws you outside to stand and let the water run over you as it cleanses so completely.  It replaces fear with love and strength and peace.  It is the storm found when our humanity collides with God Himself and the result is worship…pure worship…the God of all creation meeting us in our hard places and singing over us.

It is then that the words God speaks, will bring us to our knees…because then and only then, can my response be, “Redeemed my heart will sing.  This broken melody.  This is my testimony.” 

As I look at Louie and how our lives have changed so drastically over the past 8  months, I am thankful for the storm – the second kind of storm…the soft thunder of God’s voice…the cleansing rain.  I don’t have answers and I may wish life looked different, but I have all I need…a redeemed heart proclaiming the brokenness of this world and the healing love of God.  This is my testimony.



Here is the link to the song if you would like to hear it yourself...
https://music.apple.com/us/album/my-testimony-single/1476734894


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.  

Journal entry by Kristy Schneider

I know I often write a lot about small things that happen and my processings of them.  In all honesty, I write as much for me as I do for those reading it.  I typically keep the medical information fairly vague primarily because it is just so complex.  But tonight is different.  Tonight I write to ask for you to pray specifically for Louie. 

I am a firm believer in praying boldly and specifically.  I know God hears and understands our every prayer, and the words that make up our prayers are not the driver - our hearts are.  God longs for us to pour out the yearnings, the desires, the thoughts, the fears, the questions...all that is in our hearts.  He wants it articulated...for it to be laid out before Him.  He can take it.  He already knows it.  He is God.   

I believe there is such a beauty in praying specifically...in crying out to the Lord not with vague requests, but with concrete ones.  He may not answer as quickly or as clearly or as we would want Him to at all.  But truthfully, prayer is not about the "results," it is about the surrender.  It is about surrendering our will and our hearts to the one who holds life.  It is about trusting and believing in something so much greater than ourselves...in the one who made man out of dust and who will be there in the end to say "well done my good and faithful servant."  God is able...able to handle our hurts in prayer, our concerns in prayer, our longings in prayer, and our victories in prayer.  He is our only hope...  He is why we pray.  

Thus, I come to ask for prayers, specific ones, for my little guy.  Louie has not been feeling well overall the past couple of weeks.  He spent quite a while in cardiology yesterday for routine appointments.  We received some good news regarding his heart functioning.  It appears the new medication prescribed at Mayo is helping his heart be more effecient, and thus it has improved his heart's output.  For this we are thankful.

However, we also had something come up on his pacemaker interrogation that was quite abnormal and definitely warranted concern.  Two or our doctors discussed it together and determined that we need to investigate the concern a bit further.  They ordered additional lab work and he was sent home on a halter monitor to capture more data. 

Please be praying for the following:
1. The halter monitor to yield the insight needed to determine what, if any, steps need to be taken to improve his cardiac health and protect his life.  
2. Wisdom for the doctors here and at Mayo as they will continue to work hand-in-hand to strive to sustain (and ideally improve) Louie's quality and quantity of life.  
3. For the Lord to help us know as parents how and when to advocate for our son...especially regarding quality of life.  
4. For a small outpatient procedure to go smooth next week...for there to be no complications.  

Thank you so much for praying for Louie and our family.  It is such an encouragement to us when we know that we are not alone and there are others praying.  Thank you for the comments, cards, messages, and words of encouragement we have received the last few months.  We read and cherish each one.  As the body of Christ, may there be greater unity as we humble ourselves and seek to love others in the most beautiful way...on our knees.  

Journal entry by Kristy Schneider

I have said often that Louie has good days and he has bad days.  This is quite true.  Everyday is different.  There are days when he feels well and makes great memories.  He will play with his siblings and ultimately a "talent show" or "dance party" will ALWAYS erupt.  Louie will sing or play an instrument while the others dance and everyone giggles in great delight.  Then there are days where he feels so poorly that he will sleep or lay without moving the vast majority of the day.  He won't talk or feel like playing.  He will flash a smile if the moment is right, but otherwise he simply rests.  The hardest part is the fact that you can't predict which day is coming next.  Thus each morning we wake up and we hope and pray for a good day.  

We live in an age where we can snap a picture all the time...and we do.  There are no longer barriers such as needing to remember a camera or running out of film.  Our phone is rarely out of reach.  When you realize how fragile life is, your pictures look different...and they come more frequent.  You want to hold tight to each and every moment.  You take pictures so the memories are solidified. 

The problem with a picture is that it captures only that tiny moment...not everything that may be surrounding it.  We can then filter and zoom and edit in ways that manipulate the authenticity of a moment to the point that it is no longer recognizable to those that were there.  Then that picture can be posted.  It may or may not be truth.  It may or may not offer insight into a moment.  But once it is posted, it is there for the world to judge.  

But no one wants to be judged.  Yet we all are judged every day.  Judged by the things we post or don't post...say or don't say...do or don't do.  When the audience becomes greater, the judgement becomes harsher.  We then must question our puspose.  Words can't come back.  Judgement can't easily be erased.  We all judge and are judged each time we open social media...with each post we make...with each pause in the scrolling...  

The past seven months have been filled with many lows and some beautiful highs for Louie and our family.  There have been times where online you saw him smiling in a moment, and yet, that may have been the only smile of the day.  It may have been a day where his body struggled and he was in pain.  Social media is deceptive because a person can't be defined by a moment...but we often judge a person in the moment.  

I began this caring bridge journey in order to allow others to understand our path a little more and know how to pray for my son and our family.  I found it to be a place of processing for me and within it I have shared vulnerably.  To do so has been risky...yet it has brought about great encouragement, support, and love...well, mostly.  The authenticity has also yielded some judgement and loss.  

Yet in the end, I know who I am and more importantly whose I am.  I know what opinions I value and the character with which we lead our family.  My husband is the strength of our family.  My children are amazing and resilient.  They showed it so perfectly yesterday with the triathlon.  My children never complained when the race wasn't able to take place as planned due to severe thunderstorms.  My children didn't say a negative word when friends were helping to run them into the building so they wouldn't get drenched.  My children held hands most of the morning.  They walked together.  They played together.  They laughed together.  They cheered together.  They made memories together.

It was a day filled with moments that can't adequately be captured with a photo or with words...you had to be there.  You had to have the perspective of seeing twenty or so special needs kids competing in a way that was more about each other than about winning.  You had to know that each child had a story that was hard.  Each family had a journey that wasn't easy.  But with lots of grace and great determination, there was a also a moment when medals were placed around the necks...when tears were threatening to stream down faces...when a moment wasn't enough to hold what was taking place - oh it was so much deeper - so much beauty - so much to be thankful for.  There was so much a camera couldn't capture but the hearts of those present did.  

Then each one of those families, mine included, left that special moment to return to a life that is filled with highs and lows.  Louie enjoyed the triathlon immensely but it wiped his little body out.  The sacrifice for Saturday morning came in sleeping about 18 or so hours afterwards.  It was a trade.  Then our air conditioner went out at our house today bringing more challenging obstacles to overcome.  But when you just look at the pictures, the videos, the moments, you miss the rest of the story.  It is easy to smile and scroll and put forward only the foot you want others to see.  

However, for each of us, the moments are only pieces...snapshots of a day with highs and lows...ups and downs.  As we were putting our kids to bed tonight in our very warm house, I was talking with our girls about why it was so hot and that they didn't need their blankets tonight.  My five year old left me speechless when she said matter-of-factly, "mom, I don't mind the hot.  I wouldn't know cold if I didn't know hot."

What wisdom!  Without lows we wouldn't know the value of the highs.  Without the hard places and tears, we wouldn't be able to grasp the depth of joy in the good times.  Without the defeat, victory loses some of its power.  

Friends, we all know that there are highs and lows for each of us.  The moments are not indicative of the whole story.  Thus, when we are tempted to judge, even just for a moment, may we stop ourselves and close the app instead...turn from the temptation to decide what one's life must be like from snapshots...from tiny moments.  May we pick up the phone and talk to a person instead.  May we initiate a time for coffee to get to know one's heart not just the public moments.  May we base our thoughts on truth that only comes from having the whole picture...the whole story...from valuing people over "likes" and "shares".  May we be bold enough to ask the questions instead of judging, and graceful enough to receive the answers.  

Because ultimately the only one that is worthy to judge is Jesus and His death has offered each of us grace.  Why can't we do that more?  For the truth isn't solely in the highs and lows; it is in the character, heart, and integrity of a person.  

Journal entry by Kristy Schneider

We have a saying in our house when it comes to competitive games and activities…the saying goes like this, “We win with gratitude and we lose with gratitude.”  It is something I started saying to teach my children the joy of competing without the outcome dictating the overwhelming emotional response.  In other words, there is beauty in the gift of being able to compete and give one’s best that runs deeper than if you win or lose.

Some call it having good sportsmanship.  But for me, it is simply choosing to say people matter over competitions.  It is about celebrating that giving one’s best is enough, regardless of how it stacks up in comparison to others.  It is also about turning from the heart’s natural bent towards pride.  It is about understanding that gratitude yields humility. 

As a parent, and honestly just as a human, we tend to see life as a competition.  We live in comparisons.  We chalk up our worth to whether things are going well or poorly…what we have or don’t have…whether we are “winning” or “losing.” 

Anyone who knows me, knows my competitive spirit especially when it comes to sports…or board games...or cards…or bowling…or marbles…or…well anything.  I was taught early on that you work hard, give your best, and you always strive to win.  This attitude helped me be successful in athletics, academics, and even professionally prior to staying home to raise my children.  Yet it has been important for me to teach my children that we are not defined by our successes…we are defined by our effort.  Our effort reveals our character.  Our effort reflects our beliefs.  Ultimately for me, I pray that in all things my effort points to Jesus.

Yesterday two things happened that stirred my heart and brought me to thinking much more about this subject…

Yesterday morning Liana had a make-up swim lesson.  There is a whole lot to do to get 4 kids ready and out the door first thing in the morning – especially factoring in the logistics of Louie’s care.  Thus, I felt accomplished as we left the driveway on time.  We arrived at swim lessons and I got Liana ready.  In doing so, I went to take off her sandals…that is when I saw it…two sandals…two right sandals…two matching right sandals of different sizes…  Liana was wearing one right sandal that was hers and one right sandal that was Selah’s.  My first thought was, “Ugh, what a parenting fail!”  Then in slight embarrassment, I uttered to her swim instructor who noticed the shoes, “Well, I am really winning today!”  It was that awkward, slightly humorous moment, when your hope to be viewed as “put together” becomes an illusion.

Fast forward to yesterday afternoon…  I was playing a game of Uno with my four kids around Louie’s bed.  The first game, Selah smoked us…everyone had at least 4 cards in their hand when she won.  Louie immediately, and without hesitation, threw his arms around his sister and proclaimed with great enthusiasm, “Good job Selah!  You did good job!”  He hugged and kissed her but didn’t stop there.  He threw his arms around Liana and said, “You not win, but you do great!” This was followed by a high fives to Peter.  Then to me he said with the biggest Louie smile, “Mom, you do good!  Good dealing cards!”  So my son lost the game, but yet he was more excited than even Selah who had won.  His reaction to losing was so pure and beautiful.  He was genuinely proud of his sister and he lost with great gratitude.  The fact that he played the game and we were together was more important than the outcome. 

As I have contemplated those two moments from yesterday, I find myself in a familiar spot…wanting to respond more like Louie…wanting to find the confidence to worry less about the outcome and more about the process…wanting to cherish each moment no matter whose victory it is.

Go back to the two right sandals…

I have reflected long and hard on the statements I thought and made.  “Ugh, what a parenting fail!”  “Well, I am really winning today!”  They are simple statements that as a parent we have probably all said…or thought.  Yet even just in jest, it suggests that the winning and losing for me as a parent is rooted in the performance of my child – in this case my daughter getting the correct shoes when asked.  Furthermore, it implies that the evaluation of my parenting is seen in the compliance of my child.   None of this is truth.   

We pour into our children and we long for them to grow into Christ-following, healthy, happy, loving, kind, and well-rounded adults.  But no matter the age of our children, they still have their own will that makes decisions.  No matter how competent we are as a parent, our child will still throw fits.  No matter how loving we are as a parent, our child will still hurt someone else’s feelings.  No matter how organized we are, we will still forget something they need.  No matter how much we invest to teach and guide them towards truth, they will still sin…they will still cause us to worry…they will still have times when their will and desire is stronger than our hopes for them. 

Does that mean we have failed in parenting?  Do the wins and losses of a child dictate the heart of the parent?  When we stop looking at life through eyes of competition and comparison (which go hand in hand), we are able to find gratitude in all things.  We can lose a moment and still be thankful…thankful for our children…thankful for the chance to be parents…thankful for opportunities to improve…thankful for grace…thankful for the fact that we have more than we need…thankful for a child who can throw a fit, let us down, pick out mismatched shoes and still have life in front of them. 

The more I think of the scene yesterday at the pool, the more I want to go back to the moment I found the mismatched sandals on Liana’s feet…the more I want to have said in that moment, “baby great job getting your shoes on when I asked…I love you!” and given her a hug while chuckling inside…for gratitude makes each moment not about you, but about others.  Louie reminded me of that over a game of Uno. 

Journal entry by Kristy Schneider

Authenticity isn’t easy.  In fact, it is hard…very hard.  It is hard because inherent within the concept of being authentic, is a scary…intimidating…overwhelming…4-letter word…risk. Risk is always present when the walls go down…when the real and the raw come to the surface.

Authenticity is a risk because we are flawed people in a sin-filled world.  It is a risk because our hope is that others hold the same values as we do…and when they don’t, we can be hurt, judged, exploited, and discouraged.  Our hearts can be broken.  Our intentions can be questioned.  Our reputations marred without merit.  

Yet on the other hand there is a tremendous relief…a beauty that comes when one is open and honest.  There is growth and goodness that comes in being heard and understood.  It is a fundamental hope that we all possess because authenticity results in connection…in joint struggle for the purpose of joint gain.  It is iron sharpening iron at its greatest.

Risk.  Authenticity.  Trust.  When does one take the chance to be authentic?  When does one run and hide?  When do the wounds become enough to silence the risk…to silence the authenticity? 

When authenticity brings wounds, the natural inclination is to remove the risk…to close up…to be done with trust.  But if we are honest, the truth is, we have each probably been on both ends of the risk spectrum at various times.  We have likely wounded someone with words or deeds, possibly even unintentionally…but wounded nonetheless when they trusted us.  On the other hand, we have likely all had our trust betrayed. 

When we do the betraying…if the relationship holds value to us, we work hard to restore it.  We own our mistakes.  We seek forgiveness.  We choose repentance.  On the other hand, when we have been betrayed, we have a different impasse.  We must decide if we can give forgive and move on…and truly the basis of that decision is made in our heart regardless of the other person. 

Forgiveness is what we choose to offer out of an overflow of the forgiveness God has showered upon us…  Forgiveness was never meant to be contingent on the confession of another.  Forgiveness was never meant to require certain actions or words from someone else.  The core of forgiveness is found in one’s own heart…not based on anyone else. 

Do we learn from the actions of others and allow that to change our response to a person?  Absolutely.  So if you take a risk and a person wounds you…and there is no repentance…  Then you may change your trust in that person and whether you choose to take risks with them in the future, but you are still called to forgive…even if they never ask.  Forgiveness isn’t for them…it’s for you…for your conscience before the Lord.

Overall, wounds reduce the likelihood that we will risk again.  The hurts strip us of the willingness to be authentic.  They make it hard…really hard…to trust again…which is why authenticity is such a risk.

Circumstances recently have led me to contemplate these things.  I have had trust betrayed in a big way on this journey where I have taken a risk to be authentic.  It feels violating to have that risk result in such betrayal.  It wounds in a way that leaves the door open for me to run and hide and refuse authenticity again…and I have contemplated this path…I have considered closing up shop when it comes to taking the risk to share honestly because the pain is real and runs deep. 

But then I remember a few truths… 

  •           God loves people…all people…even those that hurt us.  We are all people prone to mess up.  We pass judgements that are wrong.  We muck up relationships.  We are messy people fumbling through life.  We wound and are wounded.  But God loves regardless…and to honor Him, I am called to love regardless as well.  If I run from authenticity because I am wounded, I miss the opportunity to love well in the midst of the pain.  I miss the chance to grow and reveal a God who is still present in the tough, unfair, hard, places of life. 
  •          To be silent let’s fear win.  Fear keeps us quiet and often withdrawn from authenticity.  Fear paralyzes and makes risk seem impossible.  For me, I have battled fear in many ways over the course of my life…and I don’t want to return to a place of being trapped and controlled by fear.  To be in that place cripples freedom…hinders love…and robs joy.  Fear reduces confidence and my confidence is not in who I am, but in WHOSE I am…
  •           Further, I know in whom I believe and He is able (2 Timothy 1:12).  Exodus 14:14 “You need only to be still, the Lord will fight for you.”  The opinions that matter to me ultimately are that of the Lord and my husband.  I have a God who sees my actions, and knows my thoughts and intentions, and forgives my sins, and loves me completely.  God has called me to worship and honor Him.  He is my judge.  He protects my heart, my family, and my reputation.  I know where I stand with the Lord…and my husband respects, love, adores, and is proud of who I am as a wife, mother, and person.  These two places, the Lord and my husband, know my victories and defeats and choose me…and I submit back to them both as my place of accountability, and leadership…they lead me…they are secure…they are my place of safety because they know all and fight for me still.  They give me the courage to stand and stare risk in the face…

When I sit with these truths and I contemplate authenticity, I recognize that as I forgive…which I am intentionally choosing to do regardless of if it is ever requested of me or not…in doing so, I move towards peace.  (By the way, forgiveness never comes by accident.  You don’t stumble upon it.  It is totally and completely an intentional and often painful path that involves continually choosing mercy.)  For me, while authenticity still feels raw, forgiveness breeds the hope found in Jesus. 

I challenge each person reading to sit with the Lord and process your places of authenticity, of woundedness, of fear, and of beauty.  Approach the places of brokenness head on…one-on-one seek restoration in a manner that reveals value in accordance to Matthew 5:23-24, whether you are the one who caused the division or not.  Evaluate your fears and remember that God’s perfect love casts out fear (1 John 4:18).  And ultimately “Above all, love each other deeply, because love covers over a multitude of sins” (1 Peter 4:8)  God's heart is for us to be reconciled to each other and live in the light as He is the light.  

So to the one who has brought about this contemplation of risk through their judgements of me…I say simply I love you…I forgive you…and I hope for the opportunity to process these things with you one day.  Until then, I will continue to prayerfully and consistently seek God and honor my husband in determining when and how to take the risk to be authentic again…knowing that the most breath-takingly beautiful places of growth come through authenticity. 

“…But I am not ashamed, for I know whom I have believed, and I am convinced that he is able to guard until that day what has been entrusted to me.” 
2 Timothy 1:12
                                                          

PLEASE NOTE: Details aren't important...affirmation towards me is not the purpose at all...my hope is simply that we all examine our hearts and relationships and live out love before the Lord and those around us.  Authenticity is a risk, but without it, nothing is real.  

Journal entry by Kristy Schneider

Today was a pretty good day for Louie overall.  He had some increase in pain later in the day but his spirit was sweet and playful when he was awake.  Many people have been asking if the medication and plan from Mayo is working…  Honestly, we aren’t sure.  We see some positive signs but we also see some concerning signs.  His heart rate and blood pressure seem to be a little bit better but his energy and alertness have declined. 

As a family we have determined our goal…and it is constant.   Our goal is simply to love Louie like Louie loves others…and to leave the rest to God.  Personally, the more I focus on this…the more I have peace in the unknown.  The more I can sleep with unanswered questions.  The more my heart is open to take little risks to show people Jesus. 

For the past for months, our family has forged a new daily tradition.  Each night we have family time.  Most days, family time happens after Louie is asleep because he is down for the night around dinner time.  This actually works out really well because it is a way we can connect with our other three kids…and it provides them focused time with us that is completely theirs…

During family time, we sit in our living room with no distractions and look each other in the eye.  Family time may include a number of things but there are a few non-negotiables.  We always go around and tell our favorite parts of the day.  We always take turns sharing a specific prayer request.  We always sing a song or hymn…or three!!  And we always end in prayer. 

When we pray, it is a tender time when each person in the family has a turn to pray for their specific prayer request and anything else on their mind.  Even Liana, our 3-year-old, faithfully lifts up sweet and innocent prayers before the Lord. 

About 99% of the time, Liana states her prayer request is for “Louie to feel all better.”  This is always followed by Selah who prays for “Louie to be able to walk again a long, long way without a wheelchair and we can dance.”  Peter will most often pray for a situation he has encountered that day.  Erik and I will chime in with a prayer request as well.  Then we pray…each of us…one by one youngest to oldest…

This is what we do…how we pray...each and every night night.  My favorite is the bold and beautiful prayers from our children who love their brother fiercely. 

Tonight my thoughts are on a mini family time that occurred earlier today.  I was giving Louie all of his medications for the night and getting him ready for bed and we started talking…we had our own little family time…just the two of us.  I asked him all the same questions we would go over as a family later in the evening.  Louie stated his favorite part of the day was going to church (something he hasn’t felt well enough to do for quite a while).  He talked about how much he loved the worship and how pretty it was.  He told me he liked giving so many high fives and knowing “they were happy to see me!” 

Then we talked more about the rest of the day.  We sang an old hymn together that he picked – “In the Garden.”  Then I asked Louie what he wanted to pray for tonight.  Louie reached out and took my hand and immediately said, “Mr. David (man in our church who has constantly invested in our family)…he in hospital…sick…I pray for him.”  Then Louie bowed his head and uttered the sweetest prayer between him and the Lord just for Mr. David. 

Tonight I can’t get this off my mind because while so many are praying for Louie, including his siblings, Louie is praying for others.  He doesn’t ask for the pain to go away…he doesn’t ask to be able to eat again or not have drain lines and PICC lines and TPN and medications…he doesn’t ask for more time to be awake…he doesn’t ask to walk and run again.  Louie doesn’t see his needs in the forefront.  He sees others first.  He lives this way not just when he prays, but in everyday interaction. 

I, on the other hand, go to bed with my own complaints for the day fresh on my mind.  I lay there and as I drift into prayer, honestly, most of my prayers are about me…my shortcomings…my desires…my confessed sin…my hopes for tomorrow…  The common thread often is me.  Yet what if I spent less time with my own stuff at the forefront and allowed others to occupy that spot?  What if in my time alone with the Lord I focused a little less on me and a little more on others? What would the result be in my day?

The more I think and dwell on this, I am convinced that one thing is for certain…God knows my heart and my needs and when I spend time praying for another person, it is never a wasted moment…never a wasted prayer.  It is heard.  It is received.  It is held by God in Heaven, as a precious treasure knowing that His children are loving each other enough to pray for each other…to surrender their own place of designated importance and allowing someone else to be lifted up. 

Now I am not saying it is wrong or bad to pray for oneself…only to point out that there is a great many around us that need us to be in their corner lifting them up…some of them too weak or weary to pray themselves.  I believe there is great power that comes when we spend time formulating our prayers not by looking in the mirror (yet there is a time and place for that), but in looking around us…looking at our neighbors…our families…our churches…our country…our leaders…our world…but also the checker at the grocery store…the babysitter...the house cleaner…the tire man…the bite squad driver…and whoever else God places in one’s path.  

Ultimately, hearts softened and willing to pray for others – even those who haven’t asked for prayers – are hearts God is molding to look more like His.  Tonight, I too will pray for Mr. David and a few other moms I know with children fighting for lives…and in doing so, I find myself so thankful for Louie…thankful for the way he teaches me to love…thankful for family time…

Journal entry by Kristy Schneider

Today was complicated.  My youngest little one is in the hospital so I have spent the last few nights here with her.  The logistics to manage Louie's medical needs and be in the hospital with her is exhausting...at times frustrating...and in honesty, borderline overwhelming.  

Today required a lot of detail work to ensure that all the needs of my children were met and appointments attended.  At one point today, I had to take Louie to an appointment with a doctor we have waited months to see.  I didn't want to leave my daughter but I knew this was an appointment that required my presence.  So it was one of those moments where your heart longs so badly to be in two places...so you struggle to be completely present in one.  

At this appointment, a resident is the one who comes in to ask the initial questions and gather medical history.  It often irritates me because I end up having to go over it all again with the doctor because to say Louie's medical history is complex is an understatement.  It takes over an hour to answer his questions and provide a basic overview of Louie's health and medical issues.  The resident then leaves the room to "go update the doctor" and assures me the doctor will be in shortly.  

I sit there and think...  I think of my little girl and how I wish I could be with her.  I review in my mind and in my calendar all the things I need to get done.  I contemplate how much time away from home I have spent this year in hospitals and clinics.  Then I look down and my watch is kind enough to remind me of how little sleep I have had.  

Just then I look up at Louie who I didn't realize was watching me...studying me.  If you have spent time with Louie you know there are a handful of questions and phrases he says repeatedly.  He asks things like "What you doing today?" and "What that?" when pointing to something someone is wearing that is unknown to him.  He will read your emotions and respond to them with amazing precision.  He will be the first to notice and ask, "bad day?" or "you okay?"

Today in that moment, Louie caught my eye as I looked up at him.   With great purpose, he locked eyes with me, and very intently he asked me something I don't recall him ever asking me or anyone else before.  He simply said, "you happy?"  

I couldn't find words to say.

Tired.  Scared.  Hopeful.  Disappointed.  Regretful.  Worried.  Peaceful.  Relief.  So many emotions flooded my heart but happy wasn't one of them.  

I didn't respond initially.  I just looked at him.  As I tried to process how to respond, he asked again, "mommy you happy?"  

I still couldn't find words. 

Yet in actuality, there were plenty of words if my husband or a friend had asked the question...plenty of words because then I could unleash all the ramblings going on in my head.  I could express the exhaustion and the things I wish were different.  I could explain my shortcomings and how I want to be better.  I could celebrate the small victories and greive the hard places.  I could pour out the fears and embrace the joys.

If a peer were to ask you if you are happy, there would be a natural pause to determine if the moment and relationship allows for authentic response...if it does, then you release...in doing so, you can find connection...you can recharge by being real and deepen in trust.  But this moment was different...it caught me by surprise.  It wasn't a peer asking me, it was a child...my child.  

As I kept my eyes on my son, I realized that buried in the simplicity of his words, was the true question, "are you happy with me?"  What my sweet boy wanted to know is how I felt about him.  In all the stress I carry, I can be slow to affirm and lost in my thoughts and busyness.  What he needed from me in that moment was to know I was pleased and happy with him.  

Thankfully I realized this and I responded with, "baby you are my son.  You make me happy.  You bring me joy.  I love you."  His face lit up and you could see the relief.  

After the appointment, I returned to my daughter's side and things calmed a bit.  I thought about the exchange between Louie and I in the doctor's office.  The more I thought, the more I hurt that my son had to ask...that there was a part of him doubting how I felt towards him.  He was seeking  encouragement and acknowledgement from me because even though my presence with him is strong, my words don't always reflect my love for him.  My silence spoke what I never intended...

Then I thought about how many times the same thing happens in marriage and friendships.  We get so wrapped up in the daily grind of life that we don't spend time speaking love and kindness.  We forget the importance of speaking words to affirm and build up another person...words to remind someone of their place of importance in our life.  We act as if saying something kind once is enough...but it isn't.  We are simply humans who fail often in this walk of life...and we need each other to pull us up, to encourage us, and to point us to Jesus.  We need to be reminded that we are loved...cherished...cared for...adored...valued...affirmed...and not alone.  

I am thankful for Louie reminding me to be more intentional with my words.  I am thankful that I had the opportunity to speak love into him.  I am thankful that tonight I made a list of 3 people close to me that I want to intentionally encourage.  In doing so, I am actually amazed at the joy and happiness it brings me just to think of speaking goodness and love over someone else.  

Who do you need to encourage today?  What person in your life is looking to you and asking with their eyes, "are you happy with me?"  Will you answer them?  

Journal entry by Kristy Schneider

Today.  Goodness.  Where to even begin...  It was a day packed with appointments, and very little wiggle room for life.  But life happens anyway…regardless of the schedule.  So I thought I would take a moment to decompress this evening and share with you the wildest day of failings and funnies that we have experienced in quite a while. 

For perspective, you must know that the day started at 1am…and 4am…and 7am…and every 3 hours thereafter with holding down a screaming and kicking three-year-old to administer pain medication for her tonsillectomy.  As I am holding her down to give meds, she is often screaming, “I miss my tonsils! I want my tonsils back!”  This super awesome adventure at three hour intervals forms the framework for the day. 

Today we had multiple appointments that were challenging, but got accomplished.  There was swim lessons, occupational therapy for two kids, and speech therapy all before 12:30pm.  I was feeling pretty good in spite of the packed schedule.  Then the real fun began…

Louie had an appointment with his PCP.  So I wrangled the tonsil missing three-year-old to give her the 1pm dose of meds and then snuck out the door for the appointment.  On the way, I got to thinking about how many hours I have actually slept since the tonsils were removed.  Due to the intense calculating this required, my multi-tasking skills failed….resulting in watching the clinic pass right on by…yep, I missed the exit for the doctor’s office.

So now I am having to detour to get to the appointment knowing I will be a little late…which for me is awful…I HATE to be late.  So I call and confess my failure to exit to the very kind receptionist and get there as quick as I can manage.  The appointment is fairly uneventful.

 As I am loading Louie back into the van afterwards, which is not as easy as it sounds, I pick him up out of his wheelchair and place his feet on the step of the van.  At that point his eyes got real big and he says “uh oh.”  At the exact same moment I see it…his GJ drain tubes are caught on the wheelchair.  As I immediately make a grab for them while trying to steady Louie, it was like a slow motion train wreck as his entire GJ tube comes sliding out of his stomach and falls to the ground under the van. 

My heart sinks… Louie looks at me and says, “I no do that!”  I sighed deeply and tell him it is not his fault, it is mine. 

As I load the wheelchair, I begin making phone calls.  I am so frustrated with myself because I just didn’t have time for a trip to the hospital.  I call our friends at Interventional Radiology and they instruct me to drive straight to the hospital…so off we go.  But on the way I am frantically making arrangements for my other kids.  I am making sure the friend staying with the girls can stay longer.  I am calling to get a ride home for Peter from his summer program…and I am trying to get a hold of my husband.  Oh the logistics brought on by an unfortunate encounter between the ground and a feeding tube…  Lord help me…

Then somehow…for some reason…only because of God’s great grace, I glance down as I am driving.  AND PANIC ENSUED…  The display, ever so kindly reveals, 5 miles to empty….  I am blazing down I-30 to the hospital with my son and his barf bag in the backseat and before I can even form a plan it is 4 miles to empty.  I am in a part of town I never stop…and you never want to stop.  I don’t have a clue where to go.  All the while my son is in the backseat saying, “mom I angry at you…you rip my tube out!” 

Let’s just go ahead and say mother of the year is definitely off the table at this point, as I am planning the speech I will provide to the kind people I hope will stop to help me…in hopes that I can convince them that they don’t need to call DHS or the mental health team when I am stranded without gas on the side of the highway with my disabled son who would be telling everyone that I just “ripped out” his tube and we need to go the hospital.  Then I realized as I am sweating out the last few miles to the gas station, that the only thing I can really do at this point is laugh. 

Laugh because, well, what else can I do.  Oh and did I mention that through all this I am like dehydrated thirsty…the kind of thirsty that is overwhelming and you smack your lips and feel like you are in a dessert.  I am looking everywhere in my van for my water bottle…I always have a water bottle…but instead in its place…in the cup holder…is bug spray.  Yep bug spray.  Not helpful in this moment at all…

Then just when I think we will be on the evening news, I see the gas station.  I sit at red lights not able to get there fast enough.  I envision pushing my van the last little way there.  But by the favor of the Lord, I pull up to the pump with ZERO to empty now on the display. 

Relief…  But considering how I picked the slowest gas pump in the city, in an “interesting” neighborhood where there are more people on foot than in cars at the gas station, and I am needing to get to the hospital before the IR team leaves for the day, half a tank will have to do.  So I book it the rest of the way to the hospital. 

And once there, sure enough, Louie, in quite the animated fashion, proceeds to notify everyone that will talk to him that “mom ripped out my tube” and he does it with sound effects and all.  Super awesome, mom fail, kind of day.  And then my husband finally returns my calls and says, "Hi honey, how is your day?"  And I just had to laugh...

But don’t we all have those days.  Days when we just need to get in bed and start again.  Days where it’s laugh or cry…or even laugh AND cry!  Days where nothing goes quite right.  Days where the struggle is mostly caused by you and decisions you have made.  Today I was there.  Today I failed more than I succeeded.  Today I wanted another chance at the day…a chance to snuggle the fussy three-year-old a little bit more (and bribe more effectively to get her to take her meds)…a chance to read with the five-year-old…a chance to sit and listen to the eleven-year-old until there were no more words…a chance to do it right with Louie – not just with his tube but with greater patience in the hard moments and more efficiency in the good ones…a chance to not count the hours of sleep I lack, but instead count the moments of joy around me. 

It is all about perspective.  So I end the day laughing at myself…laughing as I psych myself up to give meds to the very sad tonsil missing three-year old and laughing at the ridiculous moments of today…but beneath the laughter there is deep gratitude.  I am grateful that laughter brings perspective for me as I choose to not take myself so seriously.  I am grateful for the reminder that we all muck it up sometimes.  But most of all, I am grateful for a chance to look forward to tomorrow – believing it will be better…  

Journal entry by Kristy Schneider

Valentine's Day is a day focused on love, which makes it the perfect day to tell Louie's story.  You don't have to go further than a mirror to know what Louie loves...because Louie loves YOU...  Let me explain... 

Louie was born in May of 2009 into a home filled with drug addiction, alcoholism, and ultimately significant neglect.  When he was a year and nine months old, Louie, his brother and half-brother were removed from the home and placed in foster care.  At the time Louie weighted only 11 pounds and was not walking or talking.  

It was discovered that he had a rare chromosomal abnormality that led to him being globally developmentally delayed.  Thus, in the first few years of his life there was minimal investment in his growth and development.  He did not learn to walk until he was 3 years old.  At 4 years old he only spoke 5 words.  He remained in foster care for 2.5 years before my husband, Erik, and I came across this beautiful picture of Louie (almost 4) and Peter 9 (age 5) in little green suits through Project Zero.  Immediately God spoke to our heart and we knew we had seen our children.  

In July of 2013, the boys moved into our home.  Louie weighed 24 pounds and was in 24 month old clothes.  Immediately we found that Louie had some undiagnosed GI issues, but it didn't stop his smile from stealing hearts.  We poured into various medical appointments and therapies to get him on the right track developmentally.  Louie began to thrive and grow as never before as he was for the first time surrounded with all the support he needed medically, emotionally, and developmentally.  

The adoption of Peter and Louie was final in September of 2014.  Through the great grace of God, during the process, we also added a biological little girl named Selah and two years later in 2016 Liana was born.  We continued to truck through life so incredibly blessed as a family of 6.  (FYI, we are also working still to adopt their older half-brother from foster care.)

In July of 2017, Louie had his first seizure at the breakfast table.  It was frightening and we didn't know then that this would be the beginning of decline for his body.  Over the next year and a half, Louie's body would begin to fail him.  He was hospitalized 6 times in 2018 for a total of almost 3 months.  His fine and gross motor skills regressed.  His GI, neurological, and other systems declined. He became dependent on continuous j-tube feeds and about 15 different medications to sustain life.  He began to see a number of specialists including neurosurgeons, neurologists, geneticists, complex care physicians, and more.

In December 2018, Louie and I traveled to Cincinnati Children's Hospital for what was suppose to be a series of GI tests to help aid with understanding where his GI system is failing.  However, the day before we were to admit to the hospital for the tests, Louie became very lethargic and could not hold himself up.  By the time we got to the ER, his heart rate and blood pressure were critically low.  He was given significant medical intervention and sent straight to the Pediatric Intensive Care Unit.  Over the next 12 days, some of the best doctors in the country fought to understand what his body was doing and how to stabilize it.  During that time, his heart stopped three times during seizures requiring more emergency intervention.  His heart rate at night was often in the upper 30's with blood pressures of 60's over 30's.  They tried all the typical medication to support his body and yet would get minimal to no response.  It was determined that his autonomic nervous system was failing to send the correct signals to his cardiac system.  On December 28th, he was air ambulanced to Arkansas Children's Hospital where the PICU here took over his care for the extreme bradycardia and severe hypotension.  Over the next month, he was stabilized on rarely used (and very expensive) medication for his cardiac system and a pacemaker was placed on January 9th.  The hope was that by keeping his heart rate up through the pacemaker that his blood pressure would also rise to a life sustaining place.  However, this was not the case and he was placed on epinephrine to help support his blood pressure.  After multiple attempts to transition off of this medication to other meds not requiring PICU status, it was determined that his body was not able to hold his blood pressure successfully and other organs were showing that they were beginning to shut down.  After seeing multiple specialists, trying everything possible, and consulting with doctors in multiple other states/facilities, it was determined that the recommended course of action was to come home on hospice care.

This was the hardest decision we have had to make as a family but we felt the Lord giving us peace that this was the path for Louie.  Doctors felt that once we got home and removed the epinephrine that his body would likely not live more than a few hours or at most a day or two.  That was 2.5 weeks ago.  Each day at this point is a tremendous gift.  Louie is fighting for every day he is alive.  His vital are low and his body/organs are struggling, but you wouldn't know it when you catch him during his little bit of awake time.

You see, throughout all of this, Louie's love and passion for people has never waivered.  During painful procedures, he would still smile and ask to hold a nurse's hand.  He would kiss the hand of whoever gave him a shot or drew his blood.  And EVERY single person he meets, even today, will be asked Louie's favorite series of questions: "What you doing?  What you doing tomorrow?"  And when Louie looks at you with his beautiful green eyes and asks you these questions, you know he geniunely wants the answers.  Louie loves people in a way that I strive for each day.  Thus, he LOVES mail because it signifies that someone is thinking of him and connected to him.  He will open every piece of mail and hold it - some for a moment and some stay in his bed all day.  Louie will want to know the names of the peope who send him mail and will watch as we place a push pin on where they live.  It is a simple thing that brings him joy.

The outpouring of support from all over our community, the nation, and even the world, has been overwhelming.  It has brought us strength to see Louie's story and legacy continue to be built.  We pray that everyone will see his smile and know that he sees them and loves them.  If you were here, you would each be given hugs by Louie and leave smiling...that is just who Louie is...  So today, on Valentine's Day, hold tight the ones you love and know that there is a 9 year old in Arkansas who counts you as a friend for knowing and sharing his story.
Louie’s Story

Site created on February 14, 2019

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