Accepting Trouble

I am so happy to tell you that we officially have a therapy pool for Malachi! It was quite the process but it was fun watching God align all of the plans for us to make it possible. A local grant was able to contribute a significant portion of the cost and some very dear friends have donated the labor to prep the yard for us. We will have the electric installed this week and then we will be ready to fill that sucker up!

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It will take a little work to figure out the best way to make it accessible, but we have lots of ideas brewing. We also have some backfilling to do this week!

On Monday morning the concrete truck came and Malachi was overflowing with excitement when he heard that big truck.

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He is so incredibly aware and very excited about the pool. He also loved the day the crane came to deliver it.

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Levi loves to see Malachi happy. When Malachi starts laughing, Levi wants to be near him and simply watches him with a smile on his face, clearly sharing the joy with his brother. Levi showers Malachi with kisses all day long on the top of his head in such an endearing way. He sure does love his brother.

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We are also seeing all the many ways in which Levi takes the extra steps to include Malachi. He brings toys over to him and plays with them next to Malachi to make him smile. Like the fart machine…

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He also is so aware of the things that make Malachi happy. Like when the Mickey Mouse Clubhouse song comes on, Levi stops everything he is doing and races over to Malachi to help him do the infamous hot dog dance at the end of every episode. He knows that makes his big brother smile.

Here is a sweet video of Levi saying “please”. He has been talking so much lately and his words are getting more clear.

We have officially settled into the routine of self-isolation. Jake has to continue creating virtual lessons for his students but he thinks he has found a way to do it from home on our very painfully slow internet. And other than a quick trip to the church office to check messages and upload sermons onto the church web page, I have not left the house this week.  As I left the house and saw this view again I was reminded of how blessed our family truly is.

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We are trying to create routines for the boys so there is some level of order in the chaos each day can bring.

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Jake has been sleeping in the master bedroom with Levi and Malachi and I sleep in one of the other bedrooms. Their schedules are not in sync right now so separating seems to be the most logical option. Levi goes to sleep around 9:30p and stays asleep until 7a. Malachi has been staying up until at least midnight each night, sometimes 2a and sleeps until 6:33 on the dot. Thankfully I usually take the afternoon nap with Levi to make up for the lack of sleep.

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Each night around 6:30 we go play in the driveway and the boys go on a wagon ride with Jake. We were able to rig it up for one of Malachi’s adaptive seats and they love going on “lion hunts” each evening.

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The sun hides behind the house enough to shade the area for Malachi and I take his switch adapted toys out there for him to play with.

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Levi has discovered the joy of playing in the rocks and loves to ride his bike.

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He is also really loving bubbles!

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Levi keeps us on our toes in so many ways. This week he has been obsessed with the fridge and freezer, specifically the ice cream. I know when it gets quiet to go looking for him in the kitchen. At least 6 times a day we find him with his head in a carton of ice cream.

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We have also started tele-medicine sessions with each of the boys therapists. It’s a little different and unique trying to do therapy through a screen but simply letting the boys see some friendly faces makes their day.

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Speaking of tele-med sessions, tomorrow morning I will be speaking with the cardiologist over the computer and working to get a nuclear stress test ordered. My breathing was great the first half of the week but started acting up again on Thursday evening through Saturday. I am eager to find out what is going on, but also want to avoid all medical environments right now.

We officially have three cases in our small county, and 21 cases in the county we do all of our errands and shopping in. The county we take the boys to for their medical trips has 74 cases and 4 deaths from the virus. We are continuing to pray Psalm 91 over our family and friends and are trying really hard to practice faith over fear.

I always try very hard to be honest on these posts, so tonight I am going to share some things that have been swirling in my heart this week. They definitely won’t put me in the faith hall of fame, but in my moments of weakness maybe you can draw more strength for your battles.

I know I have talked about this before with you all, but I remember being a young teenager and reading the book of Job. I was floored that Job lived such a righteous life that God noticed him and actually bragged on him to the devil. I remember reading the intro to that story and praying that I could catch God’s eye in the same way. I prayed that I would develop righteousness and be a topic of conversation between Him and the devil.

But as we see in the story of Job, righteousness does not always equal an easy and problem free life. In fact, it was the righteousness of Job that the devil detested and the reason he brought horrific attacks on Job’s family.

I don’t know that I fully understood the weight of those prayers and sincere ambitions all those years ago.

I have watched God write a Job story for my life over the last 15 years. As we raced to the operating room to bring a tiny, lifeless Malachi into the world at 24 weeks I remember praying the words of Job “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.” I was so scared that my Job story would also include losing my children and was trying to brace myself to continue to try and pursue that righteousness that makes the devil cringe.

If you continue to read through the story of Job you will see that he passed the first several waves of trials that came his way. And he never cursed God, even though the devil’s attacks were brutal.

God continued to brag on Job’s righteousness and the devil turned up his attacks a notch. God said to the devil, “Very well, then, he is in your hands; but you must spare his life.” While this sounds like God was flippantly careless with his righteous servant, instead it shows how much confidence he had in Job’s faith.

Although I have very clearly seen God’s hand of protection over me through each and every trial, life has been challenging. I have always found so much comfort in reading this part of Job’s story and reminding myself that God determines the day I leave this earth, not the devil. The devil may attack me, he may wound me, but he cannot take my life. He doesn’t hold that power.

When God gave me these two special boys I felt so deep in my heart that He wouldn’t call me to this big task and not protect me in it. I always had this confidence that, like Job, God would keep the devil from taking my life.

But with these recent health issues and a less than perfect EKG, likely caused by the stress of this hard life, it has started to make me second guess that confidence I have always carried. I started to wonder, what if I am not really a Job? What if I am one of Job’s kids- someone that dies to help create someone else’s Job story?

What if Jake is the Job in this story and part of his trials will be losing his wife and raising two special needs kids alone? Has God put parameters on the devils attacks in my life and health?

These thoughts put me in a dark place this week. As that confidence in God’s preservation of my role and life started to waver I started to allow fear to creep in.

I felt it creeping in, and for the first time ever I wondered if it was warranted fear. My faith has not been shaken, my belief that God holds me in His hand has not changed, and I fully believe that God has numbered my days and I won’t make my exit until the day He has determined. But I started to wonder if that day was going to be sooner than I imagined it would be. Who would take care of Malachi? Who would meet the medical needs of Levi and advocate for him?

In Philippians we read,”the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” So this week I have been praying for the peace of God to enter me and trump my thoughts (both irrational and rational).

None of us can predict the mysterious ways of God. And many of us will drive ourselves crazy trying to do that very thing…to use context clues and gut-feelings to try to see into our own futures. But part of faith is allowing your heart to experience the peace of God and allowing it to do it’s job at guarding our heart and minds.

Job says something really powerful to his wife in chapter 2 that keeps playing in my head:

“Shall we accept good from God, and not trouble?”

The good things in life can strengthen our faith in a mighty way. But the trouble in life has exponential power to strengthen our faith in ways we can’t fathom.

It’s when we are truly able to accept both the good and the bad from God that we start to develop that righteousness God likes to brag on.

Clearly I am not there yet, as I am having a hard time accepting the trouble right now. But that’s what prayer and the peace of God is for.

Please keep our family in your prayers this week as we continue to try to stay out of the path of this virus.

God bless,

Leah

 

The Lord Is My Refuge

As the number of cases near our small community increase, I have felt my anxiousness also increase. As of today there are no confirmed cases in our small town.

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But with social distancing being in effect it seems all of the towns around us are flocking to our area to go hiking, boating, sightseeing, and picnicking. Our roads have been packed with visitors so I can’t imagine we will remain virus free as a community for long.

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The boys have been officially on lock down for 16 days and we have zero intentions of taking them out of the house for several more weeks. Jake and I have each left 2-3 times this week for various necessary reasons but have only had to go out in “public” with others one time each. We have been trying some different methods for still connecting virtually with our youth group and I have been doing as many secretarial tasks from home as possible since the office is closed.

I know we may be a minority here, but we are perfectly content being locked in house together for an undefined amount of time. This is our safe place, and the only place I can let my guard down. Levi’s energy is boundless so we have to be creative to come up with ways to keep him preoccupied.

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He is eating like a teenager, which is so great! He eats something off our plate every meal and while we have had a few gags and vomits for the most part he has managed the food better than ever before. It is so much easier to keep the boys on their tube feeding schedules while we are home.

Here he is wearing a pair of daddy’s underwear on his head.

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Levi successfully pooped in his potty this week, much to our amazement! We are still trying to figure out how to navigate potty training with his tummy tube. We keep him in onesies to keep him from pulling on the tubing/tube so it isn’t a quick and easy process to plop him on the toilet. And I can’t let him walk around naked because he will have access to the tube and yank on it. I am hoping as he gets older he will be able to understand not to touch the tube and I can dress him in a simple shirt and pants.

We tried taking the boys for a drive to just get them out of the house but when Levi realized he wasn’t actually going to be able to get out of the car he lost his mind and screamed so much he couldn’t catch his breath. He ended up choking on his saliva during a screaming episode and threw up so we abandoned our drive and went back home. That is the last time we will attempt that for awhile!

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We had some rain this week but as soon as that lightened up we did a little Wild Raptor riding in the driveway. Malachi was so excited and didn’t want to quit.

I normally don’t put sad face pictures on here but I thought you would like to see Levi’s sweet little face when he gets in trouble (on the left above). He isn’t supposed to leave the pavement on the porch and he ventured into the gravel requiring me to call him over. Sweet boy.

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Malachi has been having some really good days lately. He is sleeping 6-7 hours each night, which is excellent for him and his seizures have lessened tremendously now that he isn’t moving from place to place so often. He even took a nap this week which is so rare. Most importantly, he has been really really happy having the whole family home all day.

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We made some progress on Malachi’s therapy pool this week! The hole is ready and we are hoping they will be able to deliver it and put it in the ground by Friday. We won’t fill it up right away, but even these baby steps are so exciting!

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The boys both really loved the small “tractor” that moved the dirt. The men were hammering poles into the ground so Levi ran in to get his hammer and nail toy as well.

We have been reading a lot of books this week, one of Malachi’s favorite things to do. We found a video of a guy reading one of his favorite Grover books so I filmed a bit so you could enjoy it with him.

We also broke down and purchased Disney Plus for Malachi and so far (crossing my fingers) it is streaming pretty well on our poor internet connection. Watching a new movie each day is something he looks forward to when he wakes up!

Walking confidently with God isn’t always an easy thing. I have had several “Peter walking on water” moments this week. I have declared and stepped out in faith, but I will readily admit I have looked down at the water a few too many times and not kept my eyes on Christ. It seems like each day I have to remind myself that while our world is spinning out of control right now, God is still in control.

I have been struggling tremendously with anxiety this week. Several states around us have been posting protocols should there be a ventilator shortage, and people with disabilities are being placed on the low priority end of the lists. I don’t think that Malachi or Levi would intentionally be denied or discriminated against unless it was absolutely necessary; but the idea that they are having meetings and listing which lives are devalued over others hurts my heart in an unexplainable way. These are such unprecedented times that we are in.

I am always very open and personal on this blog, and while I have hesitated about a dozen times about sharing this with you I feel led to as it has been a faith shaker for me this week. But I am going to respectfully ask that you allow me to offer updates on this situation and not ask for more details throughout the week(s).

Last weekend I started having a little trouble catching my breath. I tried to brush it off but the breathing spells continued to come and go to the point where I considered a trip to the emergency room. Every time I weighed the pros and cons I just couldn’t justify going to the ER. The risk to my boys was just too high so I continued to try to convince myself it wasn’t a big deal and would go away.

Unfortunately it didn’t go away and I started to worry that I had developed another blood clot that had traveled, possibly causing a pulmonary embolism. The statistics for an untreated PE are not good with 1 in 3 untreated PEs leading to death. I knew that I needed to go in but was an emotional basket case as I processed how to do so without exposing myself to the virus.

God worked for me and opened doors, getting me in to see a doctor who was able to write for an outpatient CTA scan. I still had to go to the hospital for the test, but instead of entering through the ER I was able to go to the main building which is a little more protected from the active virus cases floating in and out. I will spare you the boring details of the many protocols I took to make sure that I was doing everything in my power to protect  my family.

My bloodwork came back great and the lung scan showed no clots, thank the Lord! But there were some abnormalities on my EKG that will need to be investigated a bit further this week. Again, please don’t text or call asking for updates- it is still a stressful situation for me and one I am not ready to have discussions about.

If you know anything about our story, I am sure you can imagine how difficult the decision to go to the hospital was for me. I literally worked out statistics in my head, trying to decide if potentially passing away at home from a PE rather than risking catching the virus in the ER was a better option. I know that sounds so irrational but a momma mind under stress can do some crazy things.

I spent hours in the closet crying, trying to figure out what to do. Jake and I talked about quarantine plans should I be hospitalized. The stress of the situation absolutely consumed me and put me in a dark place.

One night I was having another breathing spell and was trying hard to distract myself from it. I opened my Bible and began to read Psalm 91 and seriously thought I was hallucinating…the scripture was literally what I needed to hear from God. The next morning I doubted again that the words were THAT spot on for my situation so I read it again…and again…and again.

Take a minute to read these words:

 Psalm 91

Whoever dwells in the shelter of the Most High
will rest in the shadoof the Almighty.

I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

Surely he will save you from the fowler’s snare
 and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.

You will not fear the terror of night,
    nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.

A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.
You will only observe with your eyes
    and see the punishment of the wicked.

If you say, “The Lord is my refuge,” and you make the Most High your dwelling,
no harm will overtake you, no disaster will come near your tent.
For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.
You will tread on the lion and the cobra; you will trample the great lion and the serpent.

“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.
He will call on me, and I will answer him;
I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”

These verses exude a confidence in Christ that I found myself lacking. It was a boldness I remembered seeing when Jesus approached the lepers- he did so without fear and without hesitation.

As I drove to the hospital I continued to replay these words over and over again in my head, praying that God would send his angels to cover me and that He would keep all virus germs from coming near my tent.

But being transparent here…confidence in Christ is SO HARD! It is so unnatural. It is one of those concepts that is great in theory, but when the moment comes to put that theory into action you have doubts. Like Peter, you are tempted to look down and look at the lurking danger around you rather than focusing on Christ.

It is in these hard moments that I see God yet again refining my faith. There are still pieces of doubt and control in me that need to be removed- they keep me from fully committing to a constant pursuit of (and trust in) God.

Please keep us in your prayers this week as we navigate a world of germs. Jake will be starting his virtual teaching this week but will have to go to his classroom to work on some things. I will have to enter the outpatient hospital setting for more tests. We will both have opportunities for contamination so we are asking that you pray protection over our family, and particularly our boys.

God bless,

Leah

 

 

Pandemic

The boys have been locked in the house for 9 days now and we are oddly handling it well. The dangers that lurk out in our community are terrifying enough that we don’t want to be anywhere else but locked safely in our home. As of today there are no tested cases of coronavirus in our one stop light small town, but we do have two in the city that we frequent 30 minutes from here. And the numbers statewide continue to grow.

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Jake and I have each left 2-3 times, him to go to work twice this week and me to tie up some loose ends at the office so I could work from home. We also helped with a food bank based at our church but took extra precautions. Other than those brief adventures we have had no reason to leave and are grateful for that.

We still have plenty of food to get us through another 3 weeks if needed. Levi has been trying some of the meals I have been prepping and ate a whole scrambled egg one morning! That is huge!

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So in the meantime we are trying to find routines in the day to make it feel more normal. We have split up the boys at night so we are each able to get a decent amount of sleep which has been the biggest positive in this situation! We made a schedule that we are pretty loosely following that gives each of us a time for devotions, a time for chores, and time for some family games.

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The boys have been rotating between the same places each day. We find time for Levi to go outside for a walk with one of us, sometimes just getting the mail with momma. And other times helping daddy with the yard work.

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We worked this week to get Malachi’s new bed swing hung in his “tree house”.

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The boys have been reading books, watching movies, and listening to music out in the tree house for hours each day. We literally spend hours out there…Malachi absolutely loves it.

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We also spend time each day in the therapy room, playing with toys, jumping on the trampoline, and swinging on the indoor swing.

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We also make a round each day to the front porch to sit on the glider together.

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Malachi absolutely loves movies so we have been watching a new (to him) one every other day. Our internet is very sparse out here so we aren’t able to stream anything on Netflix so we have broken out the old school DVDs and ordered him the new Frozen II movie.

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Overall it has been refreshing having nowhere to be. We still have to fight the worry that the virus will somehow get to one of our loved ones, but we are praying against it touching our two medically complex boys.

Being locked in this house has reminded me of how incredibly blessed we are to have such a perfect place to raise Malachi. One of my biggest priorities is giving Malachi a life full of joy, and being here has allowed us to create a world that was made for him. So often we are in places where we have to problem solve and work to find ways to make it work for him. But to have a home that was built specifically around his needs is such a blessing and I am sure he feels that love and security.

When big things like the global pandemic hit, I have to be honest and tell you that my mind starts to process what it could mean for our family. It has been another reality check for me about the fleeting nature of this life, especially for our sweet Malachi. While I don’t feel like this will be the thing that takes him into the arms of Jesus, we have been talking a lot about heaven. Maybe those talks are more for my momma heart than his, but when we talk about what and who is waiting on us Malachi’s smile reminds me not to fear.

The Bible is full or words that comfort us in times like these. There is one particular scripture this week that has come to mind and it comes from Psalm 139. But when I read it this week my mind did something different…it read it through the eyes of Malachi. And for some reason that brought my heart a needed peace.

You have searched me, Lord,
    and you know me.
You know when I sit and when I rise;
    you perceive my thoughts from afar.
You discern my going out and my lying down;
    you are familiar with all my ways.
Before a word is on my tongue
    you, Lord, know it completely.
You hem me in behind and before,
    and you lay your hand upon me.
Such knowledge is too wonderful for me,
    too lofty for me to attain.

Where can I go from your Spirit?
    Where can I flee from your presence?
If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
10 even there your hand will guide me,
    your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
    and the light become night around me,”
12 even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts,[a] God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

 

I really like the thought of “Before a word is on my tongue, Lord, you know it completely.” What a comforting thing for our sweet Malachi, who tries so very hard to form words that we can understand. The Lord hears every single one.

But the verse that keeps replaying in my mind is verse 16:

16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

When God simply THOUGHT about creating us, he knew EVEN THEN how many days He would place us on this earth. No virus, no sickness, no accident, no diagnosis, no surprise can change the timeline that God has written for each of us. So while what is going on in the world today is alarming to me as a mother, I find comfort in knowing that God’s timeline will always be the outcome. The date that Malachi runs into the arms of Jesus has already been decided by my heavenly Father.

When we start to think about our time on earth as a chapter in the story God has for us, it doesn’t seem so scary after all.

Please pray for our world. While praying that this virus doesn’t take more lives is a wonderful prayer, let us pray together that those that don’t know Christ are brought to Him this week.

Much love,

Leah

 

The Unknowns

Well, things just took a weird turn in the USA. We have a lot of international readers so in case you aren’t informed, the United States is seeing a rise of the highly contagious Coronavirus and is taking preventative measures as a country to to keep it from spreading.

In our specific area in Tennessee there has been 1 case an hour south of us and 1 case an hour north of us that has been reported. Our school system has now closed for 2 weeks but likely will be closed much longer. Churches have closed, sports have been canceled, and everyone is trying to figure out how to prepare for the next wave of this.

While the coronavirus isn’t leading to the death of children (yet), we have still made the decision to put the boys into lockdown mode. We had to do this through the winters early on with Malachi so it isn’t a foreign concept to our crew. My reasoning is that if the boys get sick with any other illness they could potentially need a hospital bed, an ER room, or a ventilator…things that other adults could truly need during this pandemic. So we are doing our part to stay out of the hospital by keeping ourselves locked in the house. We have canceled all appointments for the boys (13 appointments in 6 days).

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Thankfully we still have our oxygen concentrator for emergencies and plenty of tanks in case either child needs it. We also have lots of other medical devices that can keep us away from the hospital longer, and their g-tubes provide a way of hydration. I have stocked up as much as possible on their medical supplies, medications, diapers, and formulas so we should be set for at least a month for the boys.

I also loaded up our freezer and pantry with food for Jake and I, picking up extras for the many families in our community that I know can’t afford more than a week’s worth of food at a time. I get calls all the time working in the church office from families, particularly grandparents raising small children, that just don’t ever have enough food. God has laid it on my heart to help these families out and Jake and I have provided food for them on several occasions this year.

As I felt my heart starting to need the security of food on hand I couldn’t help but picture these small children we have encountered in these dilapidated trailers in our small town. I was very blessed that my trips to the store were at times when things were being restocked so we were able to get all the essentials and some lockdown luxury items too like double stuffed oreos. We used the money we usually spend on food for our 40 teenagers on Sunday evenings and got enough to leave a bag of food on several doorsteps in town.

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There is so much unknown in the nation right now and it is natural for everyone to get that anxious feeling in the pit of their belly. But there is a tiny part of my heart that is sincerely looking forward to this break for our family. We needed a reset, and this is the perfect opportunity for that. We have created a schedule for Jake and I so that we are each able to accomplish the things we have neglected over the last few weeks like devotion time, sleep, home organizing, and focused therapy exercises with the boys.

This break is especially welcomed after this past week! We had all sorts of chaos added in with a nail in the van tire and a giant water leak in the yard.

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And then there is the toddler tornado that is Levi! A short story for you on this wild man…

On Tuesday I got the boys loaded up and headed to their therapy appointments. As I carried Levi into the office I felt something weird on his butt so when I passed him over to the therapist I investigated. I reached down into his pants and couldn’t find anything, but when I reached into his onesie I felt something cold and metal. I started t pull the object out and it just kept coming. He had somehow stuffed a full size dinner fork from our silverware drawer into the butt portion of his onesie for safe keeping. I was a mixture of emotions: embarrassed, impressed, and hysterically laughing.

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The boys both ended up with me at the office this week; I just didn’t feel comfortable sending Malachi to school with all the statistics of this unknown illness floating around. He loves getting to watch movies while I work. And Levi loves getting into mischief while I work.

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Malachi got to ride his therapy horse like Superman, one of his favorite things to do.

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And of course we ended up at more soccer games throughout the week.

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Levi is officially a stuffed animal kid, but he is oddly picky about which ones he attaches to. Right now he is smitten with his monkey, his elephant, and his puppy dog.

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Levi’s overnight oxygen study results came back and he stayed at 96-97 most of the night. Not a single dip into dangerous levels so we are cleared to stay off overnight oxygen for the time being. I know it isn’t something he can control but I am so proud of him!

I hate to trivialize anyone else’s fears right now, but God has mentally and emotionally prepared Jake and I time and time again for things going quickly from calm to chaos. It would be easy for you to read that sentence and feel like I am bragging about our ability to deal with the hard stuff of life, but that is definitely not the case. Just give me some time to explain…

Our boot camp training in going with the flow has been paying off this week as we have had a sense of calm where others have panic…because we have had to learn to trust God in ALL things, not just the easy ones.

There have been so many times that trusting God was a very hard thing to do. Unbelievably hard.

This video is from exactly two years ago. Levi had just had his 14th (ish) surgery on his airway. They had taken a piece of his rib and propped open his airway with it to try to avoid the tracheostomy. They still didn’t know if the piece of rib would hold, and they definitely didn’t know if the surgery would be successful.

The unknowns in life will emotionally wreck you until you learn to give them over to God.

I read someone else’s post on Facebook this week and it was so beautifully written but I can’t seem to find the post again. So in an effort to summarize, the author was talking about how the children of Israel in the wilderness were provided food by God each day, manna in the morning and quail at night. They were warned not to take more than they could eat and when some of them tried the food rotted.

Reading her post led me to thinking about the story in 1 Kings 17 about Elijah, a prophet of God. He had just predicted a drought in the land for many years and God said to him:

3 “Go to the east and hide by Kerith Brook, near where it enters the Jordan River. Drink from the brook and eat what the ravens bring you, for I have commanded them to bring you food.”

So Elijah did as the Lord told him and camped beside Kerith Brook, east of the Jordan. The ravens brought him bread and meat each morning and evening, and he drank from the brook.

Time and time again in the Bible we see examples of God providing supernaturally for his children. He literally dropped food from the sky for the Israelites and sent food via ravens for Elijah. But God never dropped an abundance, He instead dropped only enough to sustain them through that day.

He wanted their trust. He wanted them to look to Him each morning and each night, expectantly watching for His provisions.

How often do we look up in those moments of need? How often do we hold our hands out, expecting food to be dropped in them?

God loves our expectations because it is a fruit of our faith and trust in Him.

So as we enter a new unknown as a country I pray that your heart has the peace of God. And look for opportunities when God drops enough in your arms for you to help out someone else- maybe someone else whose arms have forgotten how to raise in expectation. Maybe, just maybe, God is using each of us to re-ignite the forgotten faith of others in a time when it is needed the most.

Philippians 4

19 And my God will supply all your needs according to His riches in glory in Christ Jesus. 20 Now to our God and Father be the glory forever and ever. Amen.

Join me in prayer this week that God opens doors for us to be the hands and feet of Jesus, giving us the power to multiply 5 loaves and 2 fish to feed his hungry children. And pray that the culture of fear and anxiousness morphs into one of confident reliance on our mighty God.

And don’t you worry about us Carrolls. We are tucked safely in at home, and more importantly tucked safely into the palm of God’s hand. There is no safer place to be!

Much love,

Leah

What-Ifs

This week we were able to tackle some big things on our to-do list medically.

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Back in December Levi absolutely bombed his sleep study by not even letting us get the wires on him. After wrestling with him for a few hours and not succeeding at getting a single lead on his head I packed him up and went home.

I knew this wouldn’t go over well with his doctor team (Chattanooga or Cincinnati) so the next day I called each of them to see if there were any alternatives that were a little less invasive that we could try instead of trying to repeat another sleep study. Cincinnati suggested a home pulse oximetry study and we agreed to try that route.

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This week I was able to go and pick up the equipment needed to do the study at home and worked to sneak it onto him while he slept. The machine recorded his results and will report them to the doctor, who will then in turn call me with a summary. But from what I could tell on my spot checks throughout the night he stayed around 96 while sleeping (100 being the best of course, and under 93 being a little concerning). I am very curious what his levels were in his deepest sleep cycles.

 

We were able to get 5 hours in before he woke up and tore the machine off.

With Levi’s paralyzed vocal cords, when he is relaxed at night his airway is also a little more relaxed causing sleep apnea. It used to make him breathe very loudly at night but in the last few months he hasn’t been squeaking in his sleep and we have been able to wean nighttime oxygen.

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We have been trying so hard to get Levi on Malachi’s therapy horse, as the sessions would be so good for his type of cerebral palsy. Each week he gets more and more comfortable around the horse and will take a lap or two; Malachi isn’t a big fan of sharing his horse with Levi but has been a good sport.

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He has also been getting more comfortable with the barn cats which is huge!

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I wish I had some sweet pictures of Malachi on the horse but we tie my phone to the saddle so he can listen to music while he rides.

Malachi has had a great week, staying at school three days in a row without issues. His original stomach medicine is finally in stock and it has been making such a big difference in his comfort throughout the day. His med is a 24 hour delayed release one that works all day, and the replacement we were using while it was out of stock didn’t work that way.

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He is growing up so much…I can’t believe he is 7 years old.

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While Malachi is at school, Levi is at the office with me. While he is an absolute doll he definitely kills my productivity.

He has been a great helped though around the house. He has taken an interest in helping with as much of Malachi’s care as he can and will pretend to do the things I do to take care of him.

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Our boys soccer team played games Thursday, Friday, and Saturday but with the cold temperatures I ended up watching from the car in the parking lot for most of them. Everything is an adventure for Levi so he didn’t mind and Malachi might be the most easy going kid you will ever meet.

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This week I have caught myself stressing a bit more than normal. We have been having some issues with the boys insurance, all correctable issues but require me to make a lot of phone calls and file a lot of paperwork. In the meantime we are getting some pretty enormous bills which can look daunting.

Adding onto that, we have recently started a few projects around the house to enhance Malachi’s life which has caused us to dip into savings. And while I truly feel at peace about the decision to proceed with these projects, the what-ifs launched an attack in my mind…

“What if Malachi’s shunt malfunctions and we have to pay for an emergency brain surgery next week?”

“What is Levi’s oxygen study comes back and we need to do some more surgical interventions in Cincinnati (out of network)?”

“What if we end up getting stuck with these incorrect medical bills and that money we used for our projects will have been desperately needed to stay out of medical debt?”

As these what ifs started to swirl in my brain I could feel my heart rate beginning to rise. I was pulling up to the house and when I opened the mailbox to check the mail there was an envelope inside from a random church in Ohio. I opened it up to find a check for $1,000 and on the memo line it simply said “gift”.

I actually started laughing to myself after I opened the envelope, as literally 10 seconds earlier I was so anxious in my spirit as I played the what-ifs. God’s timing is such a special thing.

As I look back on our walk with two medically complex children I see God so obviously present. He is continually providing for our family in such beautiful ways, yes monetarily but also physically, emotionally, and spiritually.

I think back to the Israelites wandering in the desert for 40 years, God providing quail and manna for then to eat as they wander towards the Promised Land. Even when God was literally raining food down to them they doubted his provision in their lives.

So often I am guilty of the same thing. God provides time and time again, opening doors even when they look sealed shut. But things get stressful and I begin to doubt, seemingly forgetting about the many times he has provided in the past.

I guess that is my control freak nature trying to creep back in and grasp instead of giving it over to God. I pray that I can walk boldly with God, trusting Him instead of side-eyeing Him and secretly questioning what He is up to.

Today I am thankful for His grace. He sees me in my doubts and my mind wanderings and He reminds me that He is always meeting my needs even before I recognize them.

And now for a bit of humor mixed with reality…

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Everyone has been asking me if the coronavirus is making me anxious, as we have two immunocompromised kids. The things that the CDC are recommending people do to avoid contracting the virus are things that we have already adopted into our daily routines anyway so it doesn’t really change much for us.

I am also finding comfort that there have not been many pediatric deaths from the virus, and professionals are saying that most children have already had a strand of it and built up more of an immunity. Interestingly enough, Malachi had a different strand of the coronavirus when he was sick in January! I remember the doctor reading the report from his bloodwork and telling me how obscure it was and saying that it mimicked the common cold.

And just to clarify, Malachi has never had the strand of the virus that is all over the news.

This time change is hitting our crew hard. Their little bodies have to adjust to getting their meds an hour earlier and their feeding schedules are all out of whack. We are off to bed!

Thank you for taking the time to check in on our little family and for listening to me ramble. I hope your takeaway from today’s entry is that God is good ALL the time.

Much love,

Leah

 

 

 

The Yoke

The theme of this week has been sleep deprivation, which often leads to emotional roller coaster rides for mommy.

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As we tackled appointments I tried to prep my heart for Levi’s trip to the eye doctor. I resoluted to not get emotional or angry, and to definitely not cry in the parking lot.

In the past these appointments have needlessly taken several hours. To avoid me trying to corral the boys in a tiny waiting room I now snag the first appointment at 8am. This means I have to be up by 5:00 to get everyone dressed, medicated, fed, and on the road but if it means we don’t have to sit in a waiting room for hours I will begrudgingly do it.

We got there early, dilated his eyes, and then we waited…and waited…and waited. The waiting part exhausts my emotions as we are in a small room with at least thirty other people, mostly kids and it seemed like all of them were coughing up nasty junk very close to my immunocompromised boys. We spent 1 hour and 45 minutes in the waiting area before we were called back to see the doctor.

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He looked into Levi’s eyes and said “Hmm that’s unusual. That’s very abnormal.” And I could feel the emotional floodgate starting to waver. When a brain is deprived of oxygen the body starts to kill off other body systems to try to preserve the brain, particularly attacking muscles and nerves. It seems that Levi’s brain damage attacked his optic nerve as well, permanently destroying it.

The doctor explained that it is very likely that Levi will be blind in his left eye (if he isn’t already). The right optic nerve looks okay for now. There is nothing that we can do to fix the problem or reverse the damage.

As we left the appointment I sat in the parking lot and processed. I couldn’t spend too much time in my emotions as I had to head to our next appointment across town. I don’t know if you have ever had a traumatic situation in your life- a moment that you never want to remember as it brings a flood of painful emotions. I keep trying to push the reality of Levi’s brain damage away from my thoughts, but each time we find more “domino effect” issues I have to face that reality all over again.

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I spend every week taking my boys to appointments and therapies, trying to find ways to help them cope with their brokenness. We try surgery after surgery to improve their lives. We cram our weeks full of therapies to help them learn coping mechanisms and function in spite of their brokenness.

Every single day I have to face the hard realities I try so desperately to avoid. It is a physically, mentally, and emotionally exhausting world. This week I have felt the weight of this life and allowed myself to mourn a bit.

But staying in that dark place isn’t good for my family so I have had to wipe off my feet from the eye doctor appointment and move forward. There is nothing we can do to change or affect the outcome so dwelling on it doesn’t make a whole lot of sense!

This week we have spent a lot of time snuggling, reading books, and desperately attempting “normal”. Malachi is currently obsessed with the book “The Wonky Donkey” and is in a movie watching mode. His favorites this week has been the Minions movie and the Lion King.

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Levi is, well, Levi. This week he came to me in the kitchen with something in his hand to give me. I held my hand out to receive his gift, and he dropped a fistful of toilet water into my hand. I followed the wet trail to the bathroom to find that he had decided to “clean” the toilet with the toilet brush then apparently played with the water.

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Malachi attempted school this week but they called me about an hour later and said he was crying. They asked him if he wanted mommy to come pick him up from school and he signed YES YES YES. I picked him up and he was completely back to normal when we got home. I think he just wanted to be with me for the day!

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And for the record, those are Jake’s feet not mine haha!

We have been working on several things around the house to improve Malachi’s quality of life and we made some big steps this week! On Friday we received the checks from the grant company and officially ordered the heated swim spa for the boys. It takes 3-4 weeks to arrive so in the meantime we will be prepping the area and laying a concrete pad. Thankfully some friends from church have offered to help with this step.

We have a back deck area that is in the direct sunlight for most of the day, meaning Malachi couldn’t comfortably be out there. His eyes are so sensitive to light and he shuts down when the sun is on his face. This week we had a crew come and put a roof on it so we could take him out there for family time. We have a large bed swing to hang when it is completely finished.

We took him out there today for the first time and he was SO excited! We have been calling it “Malachi’s treehouse” and the suspense has been so cute to watch on his face as he has listened to the construction process.

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Levi also approves.

I don’t know if it is the emotions of the week escalating my thoughts, but I am more determined than ever before to give Malachi the best life I can while he is here on earth. With the severity of his disabilities there is a host of things that could take him from this world in an instant. I never want to regret not doing enough to make him happy and comfortable. I want this life to be filled with joy for him.

Friday night was our youth groups annual lock-in at the trampoline park. The teens look forward to this event and always bring lots of friends, so we never really know exactly how many to prepare for. In between appointments I gathered the necessary supplies to survive the night: 30 pizzas, 320 waters, 240 canned sodas, 150 bags of chips, and a gross amount of Little Debbie snack cakes. Wal-mart pick up for the win!

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The kids haven’t been sleeping well at all this week, and I have only been getting about 4 hours of broken sleep each night. Leading up to the all nighter that the lock in would require I prayed for strength to make it through.

Jake stayed home with the boys and I took the teens. I warned Jake that nights have been rough and he definitely got a taste of the madness of nighttime Malachi and Levi. When you get one to sleep the other wakes up and the vicious cycle repeats itself all night long.

Meanwhile at the lock in we ended up with over 80 teenagers and had a really fun time. God gave me the strength I asked him for to stay up all night and drive the bus safely home the next morning. I did a Bible study with the group about the importance of being the type of friend that leads someone closer to Christ rather than away. I used the story from the Bible about the four friends that carried the paralytic to Jesus, lowering him through a roof to get him in front of Christ for healing.

After the Bible study I had the kids take turns carrying their friends in bedsheets and re-enacting the story, using the trampolines to safely catch the ones that failed. Most of them ended up accidentally throwing or dropping their friends but it is always fun to get the Bible to come to life a bit for them. And it was highly entertaining for me to watch at 2am.

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We are still playing catch up with our sleep, taking naps today in between prepping dishes for our Sunday night Bible study. Jake has the day off tomorrow and I only have two appointments with the boys so we will hopefully be able to nap in shifts. We are able to divide and conquer a bit when Jake doesn’t work in the mornings, each taking on a child for the night.

As we enter into a new week I can’t help but desperately hope that it brings better news than this past one did. We try very hard to stay positive and focus on the good reports, but lately there haven’t been many of those for either boy. I am praying for a week full of reminders that God holds us in the palm of His hand.

Matthew 11:28-30 “Come to me, all you who are weary and heavy burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

It seems a little confusing to me to think about Jesus’ burden being light so I have really tried to process this verse and decide what it means and how it applies to me.

The yoke is a wooden device that goes around the neck of oxen as they plow the fields. When we choose to put our necks in Christ’s yoke we are choosing to live a life of submission to wherever He may lead us. We are trusting that the job He has for us to carry out is a purpose driven one. And when we are walking in the will of the Father, the yoke is easy and the burden is light….because we are removing ourselves and all of our sticky human emotions from the situation.

I think it is safe to say that this week has pushed me into the “weary and heavy burdened” category so this week I will be asking Christ again for his yoke. I will be asking for Him to take the worrying and the overthinking away from me and replace it with a trust in His will and direction for my life.

I am praying for rest for my soul.

Please pray for miracles for my boys. Pray that Levi’s optic nerve isn’t damaged severely enough to cause blindness. Pray for health for both boys as we navigate lots of waiting rooms. And pray for sleep. Lots and lots of sleep for all four of us!

God bless,

Leah

 

Rebuke the Waves

We were blessed this week with some wacky weather leaving Jake with a two day work week! We loved spending the extra time together as a family, running errands and enjoying using some gift cards from Christmas on some nice meals out in between errands. We love having dad around!

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Levi is still very cautious about what he will try and we are just as cautious about what we will give him. Imagine our surprise when he stole an onion off of my salad and sucked on it for 5 whole minutes. Goofball.

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This week we will go back to the eye doctor for a checkup. Historically I leave these appointments very discouraged but I am praying that this one will end differently.

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Malachi got to go back to school one day this week and had a really great day! He also got a sharp looking haircut.

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Malachi had his weekly horseback therapy session and he really enjoyed that his dad was there to watch him. He worked extra hard, clearly showing off for dad. Levi not only sat on the horse but also let it walk about 30 feet with him sitting with the therapist! With his new cerebral palsy diagnosis it would be really good for his core muscles if we were able to get him into some hippotherapy sessions as well.

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Both boys are continuing to make progress in feeding therapy. Malachi likes to pretend that everything he eats is bugs or snakes and gladly attempts anything you give him. Levi is a bit pickier and tends to throw most of his food on the floor in protest.

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There is a phrase “If you want to know how to treat someone with a disability just look at their sibling.” Levi has been showering Malachi with so much love lately, frequently holding his hand and giving him hugs and kisses. Whenever he gets scared, like during an intense movie scene, he clings to Malachi for safety. It really does touch my heart so much.

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Both boys are dealing with a slight postnasal drip in their throats. For Levi this causes vomiting. For Malachi it causes junky breathing. His seizures and sparking back up due to the discomfort and his body temperature is also starting to fluctuate. Last night he went from 99.7 down to 96.1 in an hour. We finally have him back to a happy 98.6 but we are watching him very closely as it tends to change quickly.

When they are uncomfortable like this sleep is rare. And I am usually too anxious to sleep well when they finally crash for the night. We are in desperate need of a solid night of sleep!

We had a particularly rough night on Monday evening and Jake had to be up early on Tuesday to get to work. On those nights I take care of both boys and they tend to work on opposite schedules. Malachi stays up until midnight and wakes up for the day at 6am. Levi this week has been waking up at 2am and falling back asleep minutes before Malachi wakes up for the day.

Needless to say I was super cranky on Tuesday morning to the point where I was in tears. Yes, I realize how ridiculous this sounds but sleep has been scarce for 7 years and catches up with me every now and then. As I was ranting about being up so early I remembered the story about Jesus sleeping on the boat during a storm. I yelled to the boys “Even Jesus Christ needed sleep!!!” They just looked at me like I was crazy and I went back to my pity party.

But later I looked up that story, sure that if God laid in on my mind and heart there was something in there that He needed me to read.

Matthew 8:23-26 “When He got into the boat, His disciples followed Him. And behold there was a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him saying, ‘Save us Lord; we are perishing!’ He said to them, ‘Why are you afraid, you men of little faith?’ Then He got up and rebuked the winds and the sea, and it became perfectly calm.”

Yes, in these verses we get a beautiful reminder of the humanity of Jesus. His physical needs like sleep and hunger still had to be met, even though He was fully God.

But it is the storm that caught my eye.

The Bible is very descriptive of this storm in telling us that the boat was being covered by the waves. In the other gospels we read that the boat was already filling up with water and they began to be in danger. And as you would expect, panic began to settle over the men.

Oh how many times I have felt like I have been on that very boat. I am sure you have been on a similar one at one point in your life. You look around and all you can see is the daunting and dark waves slapping you in the face. The boat, the place you are supposed to feel safe and secure (especially with Jesus on it) is now a shaky foundation and you start to doubt if you will survive the storm.

I had my boat moment this week as I looked at the facts…there is no way that I would be able to function as a medical mama on just 2-4 hours of sleep each night. The stressors of each day slapping me over and over again the in face and with them bringing dangerous doubt.

And oh how I relate with the disciples as they race over to Jesus, shocked to find him sleeping calmly through this storm. How many times do we convince ourselves that our distress isn’t seen in our storms? Or ignored by God as the waves keep growing. Our tone tends to waver between fear and anger that He hasn’t intervened already.

But read Christ’s response: “He said to them, ‘Why are you afraid, you men of little faith?’ Then He got up and rebuked the winds and the sea, and it became perfectly calm.”

Oh man, did I feel conviction after reading that part.

I like to justify my fear by thinking it is rational, logical, and deserved. But when you are a child of God, that fear indicates a malnourished faith life. When we allow logic to trump our faith in God’s plan and power we show a lack of faith in Him.

So what should we do when we face those waves?

Treat them the way Christ did. Rebuke them in the name of Jesus and watch as even the storms in our life obey Him.

So this week I am going to work on replacing my panicky heart with a faith filled one. If God has called me to this motherhood role then He will certainly equip me with the energy needed to fulfill it in a God honoring way. I am praying this week that God sees fit to calm the storms in our world. And if not, I pray that He gives me a portion of His strength to be able to rebuke that storm and sleep right through it.

This week let’s remind ourselves to not fear the waves but to embrace the opportunity to allow them to strengthen our faith.

Much love,

Leah

 

 

 

 

 

 

 

Tubies & Tubs

It’s tummy tube awareness week so I thought we would start with some facts about my tubies.

Levi has been proudly sporting his g-tube for almost exactly 2 years. During that time we have had a handful of emergencies but overall it has just become a part of our routine. He gets 4-5 feeds of high calorie formula during the daytime and runs all night at a low rate. We have a daily calorie goal we try to hit and adjust his schedule as needed to hit that mark.

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He is fascinated with his tube so we have to keep it covered and tucked away out of his reach. We fill his bag for the day each morning so his backpack full of food and ice packs is usually too heavy to wear until around dinnertime.

Levi still loves to try to eat by mouth too but we don’t rely on that method for any calories toward the count. He still has to eat very small bites, and things like crumbled crackers in his mouth can make him vomit.

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This week he has brought me a spoon from the silverware drawer and this tub of whipped cream from the fridge EVERY morning. The boy knows what he wants.

Side not here…Levi is a toddler tornado. If I turn my back for a minute I find him on the table, climbing the toy shelves, or doing something else semi-dangerous but slightly impressive. He has started carrying his toy drum around the house to use as a step stool to reach all the higher up things that catch his eye.

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And the emotional pendulum with this kid is pretty wild…

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This is his bored with therapies face.

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This is his “mom took my whipped cream away” face.

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And this is his “mom finally caved and gave me one of her stickers (aka feminine hygeine products)” face. He was super pumped about this one.

Okay, back to tubie talk…

If Levi’s vocal cords start to function normally and can close to protect his airway we will be able to take his g-tube out permanently. If they never wake up he will have his tube for life. Just a waiting game at this point; the statistic is that 50% of kids with BVCP have their vocal cords spontaneously wake up by their 5th birthday.

Moving on to tubie boy #2!

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Malachi has the same g-tube that Levi does but we use his differently. Levi’s gets pumped in over 15 minutes but for Malachi we squeeze in his feeds over 1-2 minutes. His tummy can handle the volume better. Malachi gets 4 big feeds a day and we give him a high calorie formula mixed with blended foods.

Malachi also likes to eat by mouth but really struggles and can get panicky. We don’t push foods with Malachi, but the boy can knock out some chocolate.

The tube became necessary for Malachi about a year and a half ago. While Levi was in the NICU Malachi lost 15 pounds in 5 months. The tube has allowed us keep him healthy and fed in the midst of our crazy day. It used to take Malachi about an hour to take a full bottle by mouth so the tube has been a true game changer.

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Here is the handsome 7 year old in his Valentine’s Day outfit for school.

Yes, Malachi went back to school this week for a day! He was super excited and did great.

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He got a few belated birthday cards in the mail and loved the surprise of each one.

On Thursday the boys and I packed up and headed to the hospital in Chattanooga to see Levi’s pulmonologist. I took the stethoscope and “checked” Levi and Malachi’s heartbeat at least a dozen times trying to prep him for the doctor doing it to him. He handled it slightly better than his normal reaction but still struggled with that doctor PTSD.

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The appointment went well and we are now on an annual basis with his Chattanooga pulmonologist, and annual with his Cincinnati surgeons. He will go back this summer for another procedure in Cincinnati, and will have some minor testing done here in Tennessee in the meantime, but overall the appointment went decently.

Jake’s parents purchased us a family pass to the aquarium so I attempted a solo trip with the boys after the appointment. Malachi was giddy to go see the sharks. The lighting is low there and he is able to track and see the movement of the different creatures. His joy is so contagious!

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Levi was a terrified mess when we first went in and clung tightly to Malachi’s hand for security. He was pretty anxious the whole trip but had a few slivers of joy in there.

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If you have been reading for awhile you may remember a post I did about a year ago about a stranger offering to add a therapy pool onto our home for Malachi’s muscle tightness. Unfortunately we haven’t been able to get in touch with him after several messages, leading us to believe it isn’t going to happen the way we had hoped. We are obviously disappointed but believe that God sees things that we don’t.

With Levi’s new CP diagnosis and Malachi steadily growing bigger (more awkward to carry and much heavier to lift) we have decided if we are going to tackle the therapy tub route we need to make it happen soon. We were able to apply for a grant that will cover a large chunk of the unit and have been spending the last three weeks trying to sort out the details. In the long run we will be saving up our money to add a roof system over the top (like a picnic shelter open style) to keep the sun out of his eyes. We are so excited to be able to do this for the boys and just keep thinking about the joy and muscle comfort it will add to Malachi’s life.

The unit will go right off the front porch area so we can use the existing concrete for wheelchair access. It is just a few steps from our front door! More details to come when the ball gets rolling.  Here is a photo of Levi standing close to where the unit will sit.

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On Valentine’s Day the kids and I snuggled on the couch and watched an old video of Malachi that my Facebook memories had popped up. He was 1 year old and had just been moved from the ICU to a regular hospital room due to influenza pneumonia. He looked pretty rough, but truthfully was feeling the best that he had been in nearly three weeks.

We watched the video once and Levi aggressively signed that he wanted to watch it again. I played it a second time and about half way through his bottom lip started to pout, then quiver. He studied the video so closely and when it ended he burst into tears. He ran to me for a hug, but seconds later pushed me away and ran to Malachi. He picked up Malachi’s head so gently and hugged it into his chest, crying uncontrollably while comforting Malachi. Seeing his tender heart made me start ugly crying, so proud that he has that level of empathy for others. Malachi was grinning from ear to ear, clearly loving the extra attention and hugs.

The way they love each other is so beautiful to me.

Valentine’s night I took all the single girls from our youth group out to dinner and Starbucks. Listening to them chattering from the driver’s seat of the bus took my back to a more simple time, where world’s like my current one weren’t even on the radar.

As we waited on our table at the restaurant I started to dig through my purse, something I haven’t carried for months and took me 20 minutes to find. I couldn’t help but laugh at the things I found inside:

-half of a fake eggplant from Levi’s kitchen set

-9 small bottles of hand sanitizer

-12 individually wrapped sanitizing wipes

-a diaper

-a Target receipt from June, apparently the last time I carried this purse

As I sat and mentally compared my purse contents from 2008 and 2020 it was a very eye-opening reminder of the wild ride God has put our family on. And I couldn’t help but see the change that this wild ride has had on my faith.

I never really understood what the Bible meant when it says in Mark 8 “And Jesus told them, ‘if anyone wants to come after Me, he must deny himself and take up his cross and follow me.’ ” I didn’t understand the metaphor of the cross, or what the cross really meant.

But as I read that verse now I see it all so much clearer. The cross was a symbol of pain, suffering, and death. For someone to willingly and gladly take it up on their shoulders and pursue Christ in spite of the pain seems so contrary to human instinct.

But each morning as my very tired feet hit the floor and carry my ever growing seven year old disabled son from the bed to the living room I can’t help but hear that verse and feel it deep within my soul. We are called to deny ourselves. Other translations use the phrase “you must give up your own way”.

Taking care of Malachi is so so difficult. But it is also such a blessing. It forces me to deny myself every hour, every single day. This life is no longer about me, my luxury, my sleep. It is about serving the way Christ would, and relying on God to give you the strength to serve in that way.

The crosses that we bear, the painful things in our lives, challenge us to focus our eyes on Christ instead of focusing on the weight of the burden.

Are you gladly carrying your cross, or are you allowing it to grow into a root of bitterness in your soul?

I don’t think it is possible to take up your cross if you haven’t denied yourself first. I pray that my pride never gets in the way of me hoisting that cross onto my back and pursuing Christ…over and over and over again.

God bless,

Leah

Ashes

What a fun and full week we have had! The weather here in Tennessee went wild so we went from 70 degrees and flooding to several inches of snow. Our school system actually shut down due to the large amounts of absences due to sickness which meant Jake was home with us Wednesday through Friday.

We tackled all of our usual therapies and one trip to the hospital to meet with Malachi’s neurosurgeon. Thankfully these appointments are pretty boring as his shunt has been working beautifully from when it was placed seven years ago. During our recent ER visit they did a CT scan to check the shunt function and it was working well. These visits with neurosurgery are now annual which is a blessing.

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Levi has some serious anxiety with any and all doctors. It also doesn’t help that his specialists all share the same floor of the hospital so all of the rooms look alike. There is a fire truck in the main waiting area for the kids to play on, which sets my spidey senses tingling when I think about all of the germs on that thing. I have even contemplated bringing gloves and sanitizing it myself one day while we wait, but then I imagine I would get some pretty odd looks. Or some legit high fives from some of the other medical mamas.

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I have convinced Levi that it is super cool to wear medical gloves when he is at the hospital. He wears them for the majority of the time we are in there haha.

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This week we will head back to the hospital for a visit with Levi’s pulmonologist. We will spend the days leading up to the appointment playing with the stethoscope at home, trying our best to prep his little anxious soul.

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Malachi’s birthday was on Tuesday and unfortunately we had 6 appointments that day. But in between each one I did my very best to make it a special day for him. We went out for lunch with grandma, went to Target to pick out a toy with some birthday money, went to see the new Frozen movie with dad after work, ate chocolate cake, and opened up a few gifts at home. He was very aware and excited that it was his special day!

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He has been able to wear the same birthday shirt for 3 years now! We are getting our money’s worth.

 

Malachi absolutely loved going to the movie theater and clung to the storyline. Levi, on the other hand hated every minute of it so he and I spent most of the movie running in the hallway.

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Several months back I spotted a gift for Malachi that I knew he would love. It is a giant rubber chicken and when you squeeze him it screams for 45 seconds. Yes, you read that sentence correctly and yes we are crazy to buy such an obnoxious gift but he loves his big red chicken. He is even able to push it with his arm and get it to make noise all by himself!

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Actually, we all love the big red chicken. There is something goofy and silly about stepping on him and hearing him squawk that brings a smile to all of our faces. I took a video for you, but be forewarned that it is an awful noise:

We also got a small trampoline for the play room that can hold the weight of Malachi and one of us.

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His buddy at church gave him a new book about dinosaurs that makes noise.

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And he loves playing with his new pet snake that he picked out at Target with his birthday money. He is such a particular little boy with big opinions about what he wants.

Levi has been a live wire this week, overjoyed to have Jake at home with us. He still has a slightly runny nose and whenever he has any postnasal drip he vomits frequently. Last night was the first night he made it without vomiting. This is always a bit stressful for us as aspiration is a concern.

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He ate a non-toxic marker this week, so that was fun.

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And he hijacked our friend’s ice cream cone. He was very proud of his accomplishment on that one.

We are trying to get him to wear his feeding backpack so we don’t have to chase him around with the bag. He is not a fan.

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We have been working hard on manners, particularly saying please and thank you. I took a video of his progress for you to enjoy:

I have told you before about his tender heart toward other kids with special needs. There is another little girl at church who is a superhero like Malachi and Levi is smitten with her. He gets right up in her face to love on her and give her hugs and kisses. She isn’t always up for the invasion of personal space, but also seems a bit amused.

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Yesterday we woke up to snow! We took the boys out for a few minutes to let them check it out.

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As I watched the boys play in the snow I couldn’t help but take a deep breath and soak in the special life that God has placed us in. As the snow fell on the trees and covered them I felt like we were in our own little bubble, and it was such a safe and secure feeling. You never realize how valuable that security is until you go through a time of not having it.

Seven years ago Malachi was fighting hard for his life in the NICU. I don’t use those words flippantly.

Six years ago we were back in that same hospital in the PICU where we almost lost him again to influenza pneumonia.

Two years ago we were in the NICU in Cincinnati with Levi, caught in a cycle of hope, disappointment, and determination to keep trying.

Our lives with these boys have had so many moments of unpredictability and unknown. But as the snow fell on their smiling faces my heart felt such relief. That moment was a glimpse at the life I always dreamed about. It was a moment void of medical complexities, hospitals, and fear…just two boys and their dad playing in the snowy woods.

The truth is that we live a life of heartache. Yes, there are so many beautiful moments and so many positive things to focus on. But oh how there is so much heartache. The bad news hits us in the face while the good news is something we have to actively and desperately search for and create. It is not an easy world to navigate emotionally.

The Bible talks in Psalm about “A crown of beauty instead of ashes, oil of joy instead of mourning, a garment of praise instead of a spirit of despair.”

Seven years ago I was covered in the ashes as we watched Malachi fight for his life, helplessly sitting by his bed and praying that God would spare him. I don’t know that I can accurately describe the weight of the spirit of despair to you. I pray you never have to experience the heaviness of that load.

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This was the first photo I ever shared of our sweet Malachi with the world. I was gripped with a reasonable fear that he wouldn’t live and I wanted him to be remembered for his strength, so I refused to post a photo of my very sick warrior.

We have sat in the ashes many times in our clumsy walk through parenthood. We have had to find contentment dwelling in the spirit of despair as we fight hard battles with our boys.

But over the last seven years I have caught glimpses of the crown of beauty, I have felt the hopeful and refreshing drops from the oil of joy, and I have touched the fabric of the garment of praise. We have yet to truly seize and take hold of these things that the Bible talks about, but oh how we have seen just enough of them to find hope in the journey.

And maybe we aren’t meant to grasp those things until we get to heaven.

God has unraveled the strings of our dreams and used them to create a beautiful tapestry that tells a much more beautiful story. We can’t see the final product yet, we can only watch as the needle moves, some of the stitches more painful than others. But His vision for our family is being fulfilled.

I wrote a poem for Malachi several years ago for his birthday and it spoke to me this year as I read it, reminding me that Malachi was created to be used by God and to bring glory to His name. I know I have posted this for the last several years, but it paints a beautiful picture that my heart needs to focus on each February.

It was a breathtaking day in heaven as the father summoned the Son.
He wanted to tell him firsthand about something wonderful he had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways.
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

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May God continue to use Malachi to do mighty things! And praise the Lord that He stays close to the brokenhearted, binding up our wounds.

Much love,

Leah

MRI Results

Superbowl Sunday always brings about an array of emotions for me. We were actually hosting a Superbowl party the night that Malachi was born. Today as I prepped to have the teens over for a party I couldn’t help but flashback to that night and the emotions surrounding it.

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This week our miracle Malachi will turn 7. I will save my sappy post about him until next week, but I hope that over the past seven years that Malachi’s life has made an impact on your life in the same way has has impacted mine.

On Monday Malachi went to school and when I went to pick him up he seemed sad. The teacher told me that he was having an “off day” and wasn’t acting like himself. He didn’t have sick eyes, the first indication he is getting sick. And when we got to the car he perked right up.

At dinner I asked him if he had a good day at school and he signed “no”. I asked him if he had been happy or sad at school and he signed “sad”. I then asked him if someone had been mean to him and he signed “yes” and my momma radar went off! I asked if it was an adult or one of his teachers and he signed “no”. We continued the questions and answers until we narrowed it down to another student being mean and getting into trouble for it. He also signed that he did not want to go back to school the next day, which is very uncharacteristic of him.

I planned to talk with his teachers about the incident but later than evening I saw one of his teachers so I asked her if there had been an incident that day. She thought about it and said that yes, there had in fact been a scene caused by another student but it wasn’t directed at Malachi, but rather to the whole class.

Usually when kids get into trouble Malachi laughs, so I asked her if he had laughed and she said no. I think whatever happened in the classroom must have scared him pretty bad. But I was so incredibly proud of him that he was able to communicate so much to me and lead me to the problem! He didn’t get to go back to school for the rest of the week due to appointments but maybe our time away will have been a much needed reset button for him.

Malachi has been very vocal this week in his own ways. This was the result of me pausing the Lion King during one of the intense scenes to answer the phone at work. That’s some serious drama!!

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Speaking of appointments, Levi’s big neurology appointment happened on Wednesday morning. To re-cap, Levi was born at 34 weeks via c-section and was squeaking and struggling to breathe. He was placed in the NICU and went through a series of tests and procedures to find out the cause of the squeak, eventually leading us to his diagnosis of bilateral vocal cord paralysis.

When we were doing all of those procedures to find out the cause we discovered a few small spots of damage in his brain and it was thought he had at least one even of oxygen deprivation severe enough to cause brain damage. We were quoted that he would have a 25% chance of having cerebral palsy.

We tucked that issue out of our minds as much as possible while we tackled the breathing issues. Once those were under control we met with a neurologist to discuss the damage and he requested that we get another MRI to see how much has changed since the previous scan. We had the scan done just a few weeks ago and needed to meet with the neuro to discuss the results.

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We know the neuro well as he has been a big part of our seizure journey with Malachi. I knew that within two minutes he would unravel Levi’s results so I tried my best to not get too anxious and waited patiently through the opening questions.  He then pulled up an image of Levi’s brain and showed us that he now has 5 patchy areas of brain damage and his ventricles are slightly larger and misshapen due to scarring (areas of the brain that have died- they are the bright long lines on the outside edges of the black ventricles).

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To help give you more of a visual, here is a side by side comparison of Levi’s brain on the left and a unaffected brain on the right. In this comparison you can really see the difference in the shapes of those black ventricle areas.

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He said that based on the images of the damage, he is genuinely surprised to Levi functioning as well as he is. I guess that is a praise report hidden inside of a disappointing report! He said if he were to see this image and not know Levi he would be looking for a child that is much more physically affected.

Based on the MRI images and his clinical exam, Levi has been officially diagnosed with diplegic cerebral palsy. His CP is hypotonic meaning he is loose and floppy as opposed to his muscles pulling too tight (hypertonic). Big brother Malachi is a mixture of both hypo and hyper so we are familiar with both and truth be told we would much rather have Levi be hypotonic than too tight. Being too tight causes things to dislocate and lots of pain.

Levi’s main areas of his hypotonia are in his core, his legs, and his ankles. The only “treatment” is frequent therapies to help build up his weak muscles.

The neuro thinks that most of his brain damage is a result of his premature birth at 34 weeks as opposed to having several events where he didn’t get enough oxygen. Hearing that piece of the puzzle made me feel a bit better for some reason.

I left the appointment feeling glad to have some answers but sad they weren’t more encouraging results. He told me to continue to watch for seizure activity as it isn’t completely out of the realm of possibility for Levi.

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Trying out brother’s chair just for fun

Levi’s diagnosis doesn’t really change anything for us. He will start being monitored several times a year in the cerebral palsy clinic and continue in his therapies. He will still struggle with balance and strength, but for now it doesn’t seem to be slowing him down.

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To be completely honest, the temptation to wallow in grief has been on the forefront of my mind this week as I process our appointment. I keep thinking to myself, “Seriously ANOTHER CP diagnosis?!?!”

The devil has tried to take my mind towards the future for each son, which is a dangerous route to travel. Regardless of the longevity of life, each one of my boys will have more struggles to face, more physical pain, more doctors appointments. The inability to fix their brokenness sometimes sucks the breath right out of me.

When I start to mentally go to these dark places I have to open the Bible to refocus. One particular scripture kept coming up…”The Lord will fight for you; you need only to be still.”

To be raw and honest, I am tired of fighting. I am tired of trying to fix things on my own. I am exhausted by the pressure that I place on my shoulders regarding these boys.

Sometimes we forget that God is fighting our battles for us, and we only need to be still.

So as I sat in the car on the way home from the hospital that morning I tried to quiet my mind and be still in the presence of God. The battles aren’t mine to fight, they are His.

Later that evening I pulled up the scripture and read the context around it, something that is SO IMPORTANT to do when studying the Bible. Those words were spoken by Moses to the Israelites as they stared at the Red Sea in front of them and heard the chariots of the Egyptians barreling down behind them. They were panicking as they looked at their circumstances, feeling utterly hopeless.

When I read the story I noticed some things I hadn’t seen before…

God’s response to the Moses: “Why are you crying out to Me? Tell the sons of Israel to go forward.”

They were staring at a literal sea blocking their way. Panic had set in to their souls, and God’s simple response was “go forward”. And when they obeyed, it was THEN that God allowed the sea to part and for their feet to walk on dry land.

How many times do we find ourselves paralyzing ourselves in fear over a situation rather than stepping forward in faith?

As God continued to lay out His plan to Moses about the way he would part the Red Sea and lead the Israelites to safety, I noticed one more thing…

In Exodus 14:18 God says “Then the Egyptians will know that I am Lord.” As I read that this week I had this much needed reminder pop out at me.

Here God was performing a miracle that would lead His chosen people safely out of Egypt. But the miracles wasn’t for them. It wasn’t to re-affirm the Israelite’s faith in God, rather it was for the enemy looking in.

Sometimes God uses our situations, our trials, our circumstances to reach a group that might not be reached in any other way but by watching us turn to God in those moments.

Maybe the struggles my family continues to go through serve a much bigger purpose than only bringing the four of us closer to God. Sometimes we get caught up staring at the sea in our way. We forget that God sees a much broader picture and may be using that sea to allow an audience to catch up with us, so they too can watch the miracles unfold.

Please continue to pray for our family as we navigate this life. It requires a wisdom that we don’t possess, so pray with us that God continues to give us pieces of His infinite wisdom and peace.

Much love,

Leah