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.

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.

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.

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.

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!

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.

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.

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!

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

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

 

 

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.

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!

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.

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.

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

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.

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

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

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.

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.

 

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

 

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).

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.

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.

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.

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.

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

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

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.

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. ⁴ Drink from the brook and eat what the ravens bring you, for I have commanded them to bring you food.”

⁵ So Elijah did as the Lord told him and camped beside Kerith Brook, east of the Jordan. ⁶ 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

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

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.

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.

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.

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

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.

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

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.

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.

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…

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

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.

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.

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.

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.

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!

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.

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!

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.

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