The Narrow Road

This week we tackled some much needed appointments for both boys so we will start with some quick health updates.

Malachi went back to the neurologist this week and we have a plan in motion for weaning off of one seizure med while simultaneously increasing another. This is great news, but also a very sensitive transition. Changing seizure meds and changing doses can lead to breakthrough seizures, and while we don’t have ”seizure control” per say right now we don’t want to make things worse. I started decreasing the med we hope to eliminate and it has led to an increase in seizures. I will give it another day or two but if he doesn’t level out it is safe to assume we were too aggressive with the wean and we will have to back up and try again.

Our nighttimes have been pretty rough for several months now with Malachi staying up until 3am most nights. His brain is just struggling so much to level out.

Malachi did have to have some blood drawn to check his liver enzyme levels and I am happy to share that those levels looked great! He usually handled blood draws like a champ but really struggled with this one leading to lots of tears. Levi had a hard time seeing Malachi so sad and watching him trying to comfort him was so heartwarming.

Both boys went to see the gastroenterologist (we shorten this to GI doc) this week. This was the first time we have seen him since Malachi’s inpatient stay so we had a lot of catching up to do. Malachi lost a significant amount of weight due to his surgery and contracting covid and the scale shows that he is 34 pounds. According to the charts he is nowhere near where an 8 year old boy should be but that doesn’t surprise us a bit.

Levi has officially passed Malachi’s height and weight and is in the 75th percentile for his BMI. He is actually doing so well that the doctor has us cutting his daytime feeding pump sessions down by two. This is a pretty big deal! He is still fed continuously at night but even that is proving to be a challenge this week as he has started sleep walking a bit. He is in a bed with very high sides to keep him from rolling out and dislodging his tummy tube but the last few nights he has been standing up in the middle of the night and teetering near the side of the bed. I sleep lightly with the boys and have been able to get to him each time before something bad happens but it still isn’t an ideal new habit with a g-tube.

Speaking of tummy tubes accidents, here is a sweet picture of Levi before church this morning. Five minutes after we dropped him off at children’s church the teacher brought him to us in the service- his tummy tube extension had popped open and somehow was unclamped. Milk had poured out of his belly and all over his khaki shorts, so he ended up with the ”car shorts”- that one pair I keep in the back for emergencies. At least I got a cute photo before the chaos hit!

We wrapped up our soccer season this week and we pause all sports for a few months to regroup as a family. After the new year God has led me to start a children’s soccer ministry in our community, teaching both the sport and lessons about God each practice and game. Jake will be coaching the high school boys team during this time and we will also be running our adult indoor soccer league at the church so I recognize life is going to get wild, but when God calls me to do something I walk in faith knowing He will provide the energy and ability to see it through.

On Thursday and Friday Malachi spent a few hours at school at his request. Levi and I went into town and ran errands while we waited to pick him up and I tried to catch up on all the things that are exceptionally hard to do with a wheelchair and another toddler in tow.

Simply getting Levi out of the car and carrying him into a store was such a unique experience. I just felt so…normal. As we wheeled down the aisle with Levi in the cart I had people make eye contact with me and stop to interact with Levi. They complimented his hair, asked him his age, and smiled with their face and their eyes. I know that sounds like an odd thing to mention but special needs moms rarely get eye contact from strangers. We get awkward shuffles out of the way and we get lots of well meaning comments (“Wow you have your hands full!” or ”God gives special children to special people.” etc)

The anonymity I felt this week as just a typical mom was really refreshing- but then when I realized it was refreshing I felt a pang of guilt as if I were cheating on my special needs momma self. I love my unique motherhood journey and I have accepted the role that God has placed me in, but the social encounters this week really made me think.

I have been thinking specifically about relationships and how isolating our world can get. We have a wonderful community support system but sometimes it feels like we have worn out our welcome and we tend to see friends slowly start to drift away. Friendship with our family is a lot of work and we tend to ”bleed” onto those around us without intentionally doing so. I know this potential for friendship destruction exists so I catch myself trying to bubble wrap my friendships and not let always see the hard parts of our lives. I shield them away for fear of losing another friend, but in turn that leads to a superficial friendship that doesn’t last.

The psychology of rejection is something that has a grip on me. I don’t know if any of you share that same struggle. Each time I think I have overcome I am reminded by a circumstance or a memory that I have not fully healed from the many moments of rejection in my past from people I loved.

But I am coming to terms with the idea that God never intended us to blend in. And He provides a continual reminder in His word that our reliance should be placed on Him instead of others.

I can apply this thought to my family specifically, as God has clearly written us a novel that I have never seen in a bookstore.

But I can also apply this thought to the way we are called to live our life. When we strive to fit the mold of the world we will never be fulfilled. I think about those encounters with strangers in the store this week and how yes, it was refreshing but in the end still so unfulfilling. The devil used that temporary high in my heart to plant potential seeds of bitterness.

Matthew 7:13-14 ”Enter through the narrow gate; for the gate is wide and the way is broad that leads to destruction, and there are many who enter through it. For the gate is narrow and the way is constricted that leads to life, and there are few who find it.”

As a child of God I have chosen to walk the narrow road. It seems to foolish to now that I acknowledge that to complain about how narrow and sometimes isolating that road can be. As I reflect back on relationships that have dissolved I can’t ignore how toxic many of those friendships were in my walk with the Lord. Sometimes we foolishly mourn over branches that God has clearly pruned from our life to allow healthier fruit to grow.

Instead of looking for eye contact from strangers for encouragement on the road I need to make eye contact with God- because in the end that relationship will never dissolve. God welcomes my mess as He recognizes that He is the one who entrusted me with it.

I feel like I am off my blogging game today. We had record breaking numbers at our home Bible study last night with over 50 people! Praise the Lord!!! My brain didn’t have much energy left for blogging on my normal Sunday night routine. I will just have to trust God that He will speak to you through something that was said!

And please pray over our parenting journey as it continually evolves. As Levi is getting older we are discovering new challenges with parenting Malachi. These challenges are bringing new grief to all of our hearts as we navigate brother jealousy.

Sincerely,

Leah

Renewed Day By Day

With Jake off for fall break we decided to get the kids out of the house and embark on an adventure! Traveling with the boys is always complicated but after the few months we have had we felt like a change of scenery might do us all some good. We headed to Pigeon Forge and spent two nights being tourists just two hours from home.


Our trip was a little bit of sweet and a little bit of sour. We had some really great moments and an equal amount of emotionally challenging ones. 

We started the trip with a visit to a dinner theater called the Hatfields and McCoys. We have seen this one in the past but when we let Malachi choose which show to go to he voted to see it again. When we take his wheelchair into theaters like this one our seating is limited to the corners and top levels. Malachi is legally blind and cannot see anything from most of those spots. We decided this time to carry him in and take turns holding him so we could sit front and center in the “splash zone” (you get wet when the characters jump into the stage pool). Malachi was so excited and very much into the show when he went into a very aggressive seizure. After several minutes and him still being stuck in his seizure I quietly raced him out the back to try to reduce the stimuli. He finally stopped seizing and I asked him if he would like to go back to the show he signed yes. He did not have another seizure but him being in that one for so long depleted him of all energy. He tried hard to pay attention but his little mind was just tired. 

On the way to the rental house we stopped by an inclusive playground and tried out some of the cool options they had for children with disabilities. Levi spent the time going from child to child asking them “Do you go to church?” And getting some strange looks back. Jake and I laughed at our tiny evangelist. 

The next day was our biggest adventure day and we found a local company with a lot of activities offered. I had reached out to them a few weeks ago to ask about their accessibility and which activities they would allow Malachi to participate in. For liability reasons many companies will not allow him to participate even with adult assistance. For example, the only thing that Malachi can do at Dollywood is sit on the big train. He is not permitted on any rides. We have to be very cautious when planning activities because of his awareness- if he hears that he is not able to do something he cries so we try to avoid that from ever being something he overhears. 

Adventure #1- We loaded a tiny train and took a short ride up to a barn to meet Abu the monkey and several large birds. I had convinced myself that Malachi would be ecstatic and he gave me more of a “too cool for school” teenager vibe instead. Levi liked watching the monkey but didn’t want the physical interaction as Abu hopped from person to person. Jake and I thoroughly enjoyed it though!

Adventure #2- we took the boys mudding on a UTV through the woods. This was a result of some sheer determination as we struggled to find a safe setup for Malachi. We finally managed to get a car seat and tray positioned for him, but he was screaming in frustration. I was cringing at the idea of heading out for the hour long ride with him so angry, but as we started the drive his anger was replaced with joy. Levi enjoyed it too, continually telling me “Daddy drives crazy”. This activity was most definitely a win. 

I took a quick video for you so you could hear the giggles:

The next day we tried Adventure #3- a visit to the aquarium in Gatlinburg. It was so jam packed with people that we decided after 15 minutes to turn around and leave. Navigating the crowds with a wheelchair was just too much and our stress levels were spiking for all four of us. We made sure to see the sharks though!

Before we left Malachi and I got to sneak away on an outing to meet a penguin. Our penguin’s name was Moana, which Malachi loved. He got to pet the penguin three times, signing “more” each time he was finished so I know he enjoyed it even if his face didn’t show it haha. I think the fact that he got to do something that Levi wasn’t allowed to do (he wasn’t old enough) was the most exciting part! 

At the end of the vacation I found myself feeling…deflated. It didn’t have the WOW factor I had really hoped it would have for the boys. In addition to that, I started to process what our family vacations will look like in the future. With Levi still being so young we can get away with going to a place like Pigeon Forge and only doing Malachi friendly activities. But as I looked out the window when we drove the main strip of Pigeon Forge my eyes were drawn to all of the shiny rides and activities that I know Levi will be begging for us to do when he gets older…the go carts, the alpine slides, the zip lines. Those are all activities that Malachi won’t be able to do. I started imagining the conversations that we will have to have in the future and realizing that we are going to have to navigate some complicated things in the near future. 

We also dealt with some trauma moments from Levi that I didn’t see coming. On our big adventure day he had to wear paper bracelets for the activities we had purchased. As I lifted him up for the lady at the ticket counter to put on his bracelets he started crying. I didn’t understand why he was so upset after he had just been so excited and when I asked him what was wrong he cried “No surgery mama, no surgery”. He has attached bracelets to surgery, pain, and hospital stays. I tried to explain it to him but he just didn’t believe me. 

For the next several hours that we were there he continued to ask “No surgery mama?” Over and over again for reassurance. Apparently this made his radar go up and the next day when we pulled into a parking garage at the aquarium the tears started again and he screamed “no doctor mommy, no doctor”. I guess he has attached parking garages to medical things. 

These are the moments that break my heart. They remind me that our lives are full of physical scars and mental ones, and not having a way to heal those makes me so sad. Also realizing that there will be more scars in the future is so defeating. There is no winning this battle, there is only fighting with strength and bravery each time we go back into the battle. 

The rest of this week has been full of fun as some of my family from Ohio came down for an extended visit. We have been staying up late playing cards and visiting, and the boys have been able to play with their cousins. It has been such a joy catching up with them! I have taken an insane amount of great photos, so here is a sampling.

Cousins! And just for a point of comparison, the cousin in the back row with the navy blue and red shirt was born 5 days after Malachi.

This week I was walking in our yard and spotted a pile of brush that we have been meaning to clear for over a year now. It is one of those tasks that continues to get moved to the bottom of the list but is such an eye sore each time I spot it. But this week as I looked closely at it I noticed something new; inside that pile of chaos and ugly there were some beautiful flowers sprouting.

I sat and stared at that brush pile for quite awhile as I felt the Holy Spirit asking me to be still and allow God’s voice to be heard. And the longer I stared at the pile the more I started to see how well it represented my family and the testimony that God has been creating for us.

Our family is the ground that is hidden under that brush pile, covered in the death of our dreams, our expectations, and our comfort. As each new wave of trials has been stacked on top of us the darkness gets thicker and thicker. Yet through the tiny gaps the light is able to pierce that darkness and touch the soil. New growth is happening and God is literally bringing beauty from the ashes (Isaiah 61:3).

The Spirit laid this scripture on my heart and as I read it in the context of the brush pile I couldn’t help but feel God speaking to my heart. Maybe it will speak to you as well.

For God, who said, “Light shall shine out of darkness,” is the One who has shone in our hearts to give the Light of the knowledge of the glory of God in the face of Christ.

But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not abandoned; struck down, but not destroyed; 10 always carrying around in the body the dying of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who live are constantly being handed over to death because of Jesus, so that the life of Jesus may also be revealed in our mortal flesh. 12 So death works in us, but life in you.

16 Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day. 17 For our momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 18 while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

2 Corinthians 4:6-12, 16-18

Verse 16 is the one I really needed to be reminded of this week, so it bears typing it again:

16 Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day.

Often times I forget that God is a renewing God. We all will go through brush pile times…times where the weight of the burdens you are under feels like it is almost too much to bear. But it is in those moments that we have to remember that God is renewing our spirit each and every day. He is still very active and very hard at work, allowing new life to spring forth even under the weight of burdens. And allowing beautiful things to grow out from under the brokenness that we carry. He will also provide the gaps in our hardest moments to allow us to let His light shine through.

And when you step back and really take a look you will notice that simple things like flowers will look even more magnificent when they are placed with a backdrop of affliction.

Afflicted but not crushed.

Perplexed but not despairing.

Persecuted but not abandoned.

Struck down but not destroyed.

I don’t think you can find a more uplifting verse than this one to kick off a new challenging week. Please keep us in your prayers as we tackle lots of medical appointments this week for both boys.

Much love,

Leah

Discipleship

If I am being perfectly honest, I have a very hard time being still. I am a projects person and have always packed my days from start to finish with productivity- well, I guess I should be more honest and say “busyness” as it isn’t always productive. Even when I am resting my mind is actively detailing each upcoming project. I worked three jobs in college, 7 days a week, and took on 18-21 credit hours each semester to graduate with the lowest debt possible. I crave busy- almost to the level that it becomes an idol so it is something I have to cautiously watch.

I recently made the decision to step away from my job as church secretary and it has left an odd void in my brain. When Covid hit in 2020 our church closed the office and I worked from home, going up to the actual office when needed to complete the tasks I couldn’t accomplish at home. Slow days at home used to become church office catchup days. Now slow days at home are just that…slow days at home.

The temptation to pack those days is ever present but I have been trying to consciously fight those urges and find contentment in being a stay at home mom. I have been trying to establish routines and am reminded each time that the task isn’t an easy one with medically complex children. Sleep routines are still wonky; some nights this week Malachi slept a total of 2.5 hours, and other nights he slept 6 hours. Each day is a new one with no preconceived notions from the last.

We spent most of this week at the house playing games, catching up on medical phone calls, and being intentional with our time. The boys did some painting which they both thoroughly enjoyed.

Side note- pee pads work as wonderful table covers when painting! Excess medical supplies for the win!

The boys also got to spend some time in the therapy pool. The temperatures are cooling down and it is prime time for them to spend evenings in the pool.

We titrated Malachi’s CBD oil up for a final time early this week and it always takes some time for him to adjust to the new dose. We have officially maxed out the medication level for him post-liver failure. They are worried about going any higher than 0.7mls, but he was formerly at a dose of 1.5mls. The good news is that the tiny increase we were able to do this week (0.2mls) did seem to help us gain a bit more seizure control. He was having 6-8 pretty nasty seizures a day. Some of them were lasting longer than 4 minutes. But as of today he is only having 2-4 and they are much more mild.

His personality is starting to return as well and you can tell that he is generally just feeling better on the new dose.

Levi is changing by the minute it seems. His vocabulary is continuing to grow and the things that he says are legitimately funny. We have been working hard on manners and how to handle big emotions- I have never met a more empathetic kid in my life. He cries during most Daniel Tiger episodes. He has such a tender heart.

This week I was playing a song while doing chores and I noticed Levi intently listening. He joined in and much to my surprise he knew most of the words! I filmed a little chunk for you:

This week Jake is on fall break and we have some exciting adventures planned as a family. We have had so many tough weeks lately and Jake and I agreed that we need to create some fun for them. I am confident we will have some great stories to share with you next week as we have been scheming since Covid week.

I have been thinking a whole lot about discipleship lately. I recognize that the term may be a foreign to you so I shopped for a definition that I liked: “teaching biblical precepts, while modeling and guiding others toward living righteously as followers of Jesus Christ”.

I have been specifically burdened (in a good way) by what I want discipleship to look like with my own children. As youth leaders we see dozens and dozens of children each year, and it doesn’t take long to spot the ones that are being discipled at home. Too often families believe that the burden to disciple is on the church. But the time I spent with my children far outweighs the 2 hours they sit in church each week.

It is an honor to me to be able to introduce these boys to Jesus. To help God’s word come alive to them and help them understand what a relationship with God looks like.

But how in the world do you disciple a 3 year old and a medically complex 8 year old?? That question has been swirling in my brain as I try to find out what God wants me to focus on with each of them.

I was THRILLED to find some amazing books to help and I thought I would share them with you all in case you are hunting for something similar. They came in this week and they have already served as great stepping stones to intentional talks about God.

Here is a link to the books in case you want a set for yourself or someone else: https://www.amazon.com/stores/page/89EAC3F9-C534-4BBE-9EF1-485CE9DCA20E

While these books have been helpful at the teaching aspect of discipleship, the modeling and guiding parts are proving to be the most challenging. These boys see me at my worst. They see me when my temper is short. They hear me gossip. They get front row seats to my sinful and human side. But these ugly moments are such great teaching moments for them to learn from as well. Moments when I can point to the grace others have shown me. Moments when my tank is empty and I have to call out to Jesus for strength.

I guess the word for the night is ”intentional”. I am working at being more intentional in discipling both boys.

Billy Graham said ”Our faith becomes stronger as we express it; a growing faith is a sharing faith.”

I am not really sure why I typed this as it doesn’t sound like a devotional. But my hope is that by sharing my inner dialogue that maybe I can help encourage you in whatever discipleship or Kingdom work you may be called to. Who in your life needs to meet your Jesus? Who needs to see your ugly, weak side to help them truly understand the grace and power of God?

How many opportunities do we miss when we allow ourselves to believe we aren’t equipped or qualified to share the gospel with others?

I will be praying specifically this week for opportunities for each of you to get to share a piece of your faith with someone else. And I will pray that God gives you eyes to spot those opportunities and courage to start those conversations.

2 Timothy 1:7 “For God has not given us a spirit of timidity, but of power and love and discipline.

And please continue to pray for our family. And selfishly I ask that you pray for me as I shift my focus from fruitless projects to the Kingdom work in my own family.

Sincerely,

Leah

Stewardship of Suffering

Fall is here! This is my favorite time of year here in Tennessee as the weather is very Carroll boy friendly. The cooler temperature and low light are easy on Malachi and we love to spend time outside on the playground and time in the therapy pool.

We also broke out some of the clothing in storage to see what we have for Levi’s fall wardrobe. Even tasks as simple as these can trigger some emotions that I never see coming. Early on in our journey with Malachi I ignored common sense often and bought clothing for him that just wasn’t practical…we have to be very cautious with the clothing we put on him and many can accidentally come up over his mouth creating a suffocation risk. I would bring the items home and put them on Malachi only to realize that my superficial mommy desires were trumping what was in Malachi’s best interest and into the storage bin they went. Opening those bins is a flashback of sorts and brings back those moments of not getting to be a ”typical” mom. Being able to put them on Levi is surreal and heals my heart a bit.

Speaking of clothing, Malachi went back to school this week! I let him pick out his outfit as often as possible and he was extra picky, nixing four shirts before settling for his green alligator shirt and a superhero bib. He was incredibly opinionated, signing ”NO” as clear as possible.

School looks very different for Malachi and it is written into his IEP that the school system will honor whatever schedule we as his parents deem is best for him. Obviously with his health surprises over the last two months he has not been in a stable enough place to consider going at all. He still does not have any seizure control right now but we are continuing to titrate his old seizure medication up in hopes of getting a grip on those. On Tuesday I will increase to our new maximum dose for his CBD oil (Epidiolex), but even that dose is less than half of what he was taking pre-liver failure. His epileptologist is just not comfortable taking him back to that dose anytime in the near future.

With so many seizures each day and each of them lasting for several minutes we have been hesitant to take him back to school. We have started off slow, taking him just one day last week and trying to increase to two days this week. He ended up staying for 2.5 hours and that was enough to wipe him out for the rest of the afternoon. He was really excited about going back and seeing his friends and his teacher!

Malachi is in the Comprehensive Development Classroom (CDC) which has varying disabilities that span all elementary grades. There is a main teacher, several parapros in the classroom to help with the students, and a nurse assigned specifically to that classroom. I feel comfortable with the staff in the classroom and I know how much Malachi enjoys being independent and away from mom. They sent me this sweet photo while he was there.

This week has been difficult as we have been navigating potty training with Levi which has been brewing some major emotions and jealousy from Malachi. I have been very cautious about the words I choose to inspire Levi to pee on the potty, avoiding phrases like ”big boy” and negative references to being a baby because of diapers.

Whenever we talk about the topic Malachi starts signing ”No” and gets agitated. We have been trying to make it fun for him too, giving Malachi a mini M&M for each time Levi successfully pees on the potty and gets his M&Ms but it doesn’t seem to be curbing the jealousy much.

Levi has also been asking very specific questions about Malachi being potty trained and asking when he will walk. We have been trying our best to explain that Malachi might just get to take his first independent steps on the streets of gold in heaven. That leads to even more questions from Levi and we have been doing the best we can to try to answer them in an age appropriate way. I took a sweet video this week to share with you all:

The Bible is going to so alive for Levi as he grows up. What a hidden blessing. And little brother was awfully excited to pick up Malachi from school.

One night this week Levi fell asleep on the couch doing ”Me devotions”. Sweet boy.

I have been trying really really really hard to keep a positive outlook this week and while the struggle is still very real, I seem to be in a better place. The continual sleep deprivation continues to be my biggest hurdle. Jake gets a fall break a week from Monday and we are looking forward to having him home for a bit.

We have been able to get a few pieces back to our schedule this week that existed in our lives pre-hospitalization. Having those pieces back just feels right. High school girl’s soccer, youth group, men’s Bible study, family Bible study…we challenged our energy levels a bit trying to catch up on all of the life pieces we had to lay down or not give 100% to over the last few weeks. It is exhausting but oh so wonderful.

When I have the responsibility of teaching the youth I tend to be plugged into the word way more often to plan our discussions and lessons. It feels like I am drinking a cold glass of water on a hot day! It is so soothing to my soul to open up a physical Bible again and look for the things God wants to teach me through His word.

This week we tackled the misconception: ”Since evil and suffering exists, a loving God cannot exist.”

I could type for hours attempting to answer this question but that is not the route I feel I need to go. But I do want to touch on suffering.

Obviously the concept of suffering is a theme in our lives, but a relationship with God changes the disdain we have for suffering. Now don’t misunderstand me- suffering isn’t pleasant and watching my children suffer is more difficult than words can describe. But I also recognize the many ways that repeated moment of suffering have rooted my faith in God.

Ecclesiastes 7:4 “The heart of the wise is in the house of mourning, but the heart of fools is in the house of pleasure.”

The amount of godly wisdom we can gain in our sufferings is staggering- but we have to be willing to have eyes that search for those glimmers of faith building moments. God increases our wisdom each time we go through these trials, strengthening our faith to be ready for future attacks from the devil.

I explained to the teens that we are called to be good steward of our suffering. Those moments of sadness, mourning, and discomfort have the ability to brew a magnificent testimony that words without experience can’t create. Suffering creates a natural gospel story in our lives to tell others.

Too often we let our self-centeredness take over and convince ourselves that our suffering only affects us, when in fact our suffering can become a wide net reaching others and allowing them to spiritually grow alongside of us (sometimes during but most often after).

Have you been a good steward of your suffering? Have you allowed that part of your story to become a part of the testimony you share with others? Our spiritually refining moments can have a profound impact on the people we allow to peek into the windows of our lives.

John McArthur says ”True wisdom is developed in the crucible of life’s trials.”

I think back to all of the wisdom I have gained about the character of God by watching very hard things manifest in my life.

Sometimes the pruning God intends for us is painful, but in the end the purpose is to produce more and more fruit in our lives.

Much love,

Leah

Dwell

Sometimes I struggle coming up with a first sentence in my entries. The first sentence always seems to set the tone for the rest of the blog entry and this week I find myself wavering between lots of emotions. I don’t know how to start an entry and convey that we aren’t doing good, we aren’t doing bad, we are simply surviving in just one sentence.

The truth is that life has been incredibly hard lately. Yes, we are through Covid but we are still so far off track from all of the drama prior to that round of sickness. We are so thankful to be done with sickness and emergencies, but I still long for a baseline so I can get my bearings again.

Malachi’s seizures continue to be a daily battle. They are lasting for several minutes and he is having at least 6-8 a day. Most nights this week he slept just 3 hours and his body and mind are tired. We met with his epileptologist this week and I had to fight back tears, asking him to please please please help us find some relief for his body and brain. We had found such a great combination of seizure control meds prior to his liver failure. Being back at step 1 for control is so discouraging.

We have started a new regiment as we struggle to get some of his old meds back on board. Right now Malachi is on 4 different seizure medications twice a day. The medications cause his personality to disappear a bit and he is lethargic and sleepy. When he does fall asleep during the day he wakes up with massive seizures and vomiting.

We are just in a very hard season of life right now and I find myself feeling very ill equipped. Watching suffering never gets easy.

Malachi’s bloodwork shows that his liver enzymes are in a safe place and we are grateful for that! We have started a wean to get rid of one of his liver medications and we are hoping that helps clear up the intestinal issues he has been dealing with since his surgery in July.

Even through his exhaustion and mental fogginess Malachi continues to give 100% at horse therapy. Seeing that big smile was the highlight of my week.

Both boys absolutely love animals. A friend of ours owns a farm down the road and invited us over to play with their puppies before they go to their new owners, so of course we accepted and I took the boys over for some puppy cuddles.

We also got to feed the chickens and check for eggs. I don’t have many photos of Malachi as he is getting bigger and requiring both of my hands to support him and keep him safe.

Levi has been a mix of sweet and sour this week. I am told that comes with this age, but that doesn’t really make me feel any better about it haha.

There are times when he is kind and so sweet. We have been spending time talking about manners and kind words and hearing him use words like ”thoughtful” and ”rude” makes me smile.

And then there are the difficult times. The temper tantrums that are just now starting to frequent our home. The bad decisions and the consequences that follow. Parenting well and discipline requires a consistency that I am not always to provide when my arms are filled with a seizing Malachi.

He has been asking every night to play a game and loves to sit around the kitchen table as a family. He is so inclusive of Malachi, even asking for us to order Malachi his own mac and cheese at a restaurant today.

Psalm 91:1-12

“One who dwells in the shelter of the Most High will lodge in the shadow of the Almighty. I will say to the Lord, ’My refuge and my fortress, my God in whom I trust!’ For it is He who rescues you from the net of the trapper and from the deadly plague. He will cover you with His pinons, and under His wings you may take refuge; His faithfulness is a shield and wall. You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness, or of the destruction that devastates at noon. A thousand may fall at your side and ten thousand at your right hand, but it shall not approach you. You will only look on with your eyes and see the retaliation against the wicked. For you have made the Lord, my refuge, the Most High, your dwelling place. No evil will happen to you, nor will any plague come near your tent. For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.

I bolded several thoughts that the Spirit pressed on my heart as I read this scripture and I would like to share those with you.

Dwells”. This word is one that has been placed on my heart so many times this week. How often do we play the back-and-forth game with God, leaning in when times are hard by leaning away when we feel like we have everything under control. There is a difference between speaking to God and dwelling with God. Dwelling is a long term rest in His presence. It isn’t a quick refill and then head back out. It is taking time to lean in close and rest in His embrace.

Rescues you from the net of the trapper and from the deadly plague.” Y’all, this one hit me hard. Sometimes we find ourselves in the net of the trapper and sometimes we get the deadly plagues. We are not exempt from attacks from the devil. You WILL end up in his net. We have to stop being surprised when the trials in life come- learn to expect them and spend the easier days building up your faith for the hard stuff of life.

This week we were talking about our puppies upcoming surgery to be neutered. Levi listened intently as Jake and I talked to one another and then he chimed in with ”The puppies have to do hard things?” This is a phrase we use often in our home, particularly around medical procedures and uncomfortable things. I am constantly repeating a motto of sorts ”sometimes in life we have to do hard things. And you CAN DO hard things.” No one is exempt from the hard things of life. Sometimes we need to be rescued, and what a faith building moment those rescues can be!

Under His wings you may take refuge.” Sometimes I get so focused on God swooping down to rescue me like we just talked about that I forget that the responsibility to nestle under the wings of God also lies on our shoulders. God won’t hold you prisoner under His wings, it has to be our choice to remain there and to take refuge. Choosing refuge is a decision, not a mandate from God. He offers those spots under His wings to give us moments of peace and protected respite.

You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness” When I read this verse it knocked the wind out of me. This is the struggle I have been in this week. My mind and heart have been at war each evening as I lay my head on the pillow, spinning as I process Malachi’s future. It terrifies me to think about losing him. I have found myself praying heavily over his death this week, whenever that time may come, that God protects Malachi from suffering. The thought of the future has been keeping my mind up at night, leaving me weakened for the arrows that fly by day. The constant arrows…the seizures, the medical mishaps, the “hard” stuff of our lives. This verse says that we will not be afraid of these things if we have made the Lord our dwelling place. When these thoughts at night overtake me and stalk my brain it means that I am not dwelling with the Lord. I have strayed and I need to find my way back under His wing.

For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.” This verse is such a beautiful verse. The mental image it creates for me is so special, especially considering Malachi is unable to walk. I have this scripture in each of the boy’s bedrooms as a reminder to pray it over them. Knowing that there is a host of angels surrounding us and waiting for those moments when we trip so they can catch us is so special.

I can feel in my heart and soul that I have stepped a bit too far away from the protection of God. I have moments of dwelling, but they have been fleeting and just enough to refill that cup just slightly. This week I will be working to settle in under those wings again and thank Him for His faithfulness in our lives.

Malachi is ready for bed and that is a cue I would hate to ignore! We both need some rest. But I am so thankful for the many ways you lift our family up in prayer.

Much love,

Leah

Pride the Spiritual Cancer

This week we re-entered the world, very weak and shell shocked but so happy. Our endurance for everything has been challenged and it will take some time for us to return to normal.

Jake went back to work on Tuesday and managed well through his classes. By Thursday he was back to coaching soccer and trying a few things outside of work hours. Someone on the sidelines took this photo at the game and I couldn’t help but turn it into a meme.

The boys returned to horse therapy on Monday and they were thrilled to have human interaction with others. They worked very hard at therapy and both fell asleep on the way home. Malachi was the most excited about the barn- he hasn’t been to horse therapy since before his emergency surgery in July.

I have had a hard time with my energy level. At the beginning of the week I tried to jump back into things but my body reminded me that it needs some time to recuperate. I was hit with some pretty big waves of fatigue and some tightness with my breathing. I also broke out in another rash that we are thinking is poison ivy so I went back to the doctor this weekend to get another steroid to help with inflammation in my lungs and maybe relieve some of my allergic reaction to the poison.

But overall we are healthy and happy! And the boys got some much needed haircuts.

Random side-note: Levi has started a rock collection.

Malachi has an appointment with the epileptologist this week and I am so eager to talk to him. His seizures have been so aggressive lately and clearly this new medication regiment he is on is not working. In addition, the med combination he is on includes a vitamin for his liver that causes stomach upset. Today starts his 9th week straight of diarrhea. I am really hoping his bloodwork will be good enough for us to consider eliminating and replacing some medications.

He has struggled the most this week with energy. I grew worried about him mid-week as his color was off. I could tell he just felt a little unwell and his sleeping has been very disjointed, like his body can’t relax. He seemed to improve as the week went on but I will feel a lot more comfortable after some bloodwork on Tuesday.

Malachi’s g-tube popped sometime this morning, which normally would send us into a flurry but after the weeks we have had we didn’t even finch and got a new one in easily. It is so interesting how perspectives can change. “Worst case scenarios” tend to shift a couple levels down when hard things hit.

Levi is still a bundle of energy and a flurry of words and questions. He has been re-telling the story of the night “Daddy passed out in the kitchen” to people and hearing his take on it all makes me laugh. The details he retained from the night are impressive for a three year old.

I didn’t have the clarity of mind to share much of the funny moments with you from the last few weeks but we had several. They were such precious jewels to me as they made me smile through my tears.

On the first really bad evening I was trying to keep both kids hydrated with Pedialyte. It was 3:45am and I was up with two feverish boys. I poured a glass of blue Pedialtye to send into Malachi’s gtube and Levi asked for a glass. I poured some for him in a 2 ounce medicine tube and carried it over to him on the couch. As I was getting ready to feed Malachi Levi said ”Momma, momma! We having a party!” and then clinked his little medicine tube of Pedialyte against Malachi’s cup before taking a big drink. His joy over our “party” on the couch made me smile. He was so incredibly sick in that moment but found a silver lining.

A few nights later Levi started to get very loopy from sickness and extra dramatic. He would burst out crying and when I asked him what was wrong he would say ”My Chi Chi is sick” and start sobbing. Even in his discomfort he was concerned about his brother. So sweet.

Another night he was on the verge of sleep and gasped loud enough for me to jump. He sat bolt upright and said “MOMMA!! There is a HAIR on my leg!!!” And showed me a single hair (in the hundreds) that he had on his leg. I acknowledged his leg hair which seemed to satisfy him, so he closed his eyes and went to sleep.

I think we were all a little loopy by that point.

On Wednesday I was able to meet with my youth group for the first time in several weeks, and oh how refreshing it was to reconnect with them. I shared with them the spiritual struggles we have gone through in each branch of our recent challenges, and sometimes being honest and transparent about our moments of weakness can provide such guidance for others. When I prepare lessons for them I try to treat the opportunities as ”training moments”, hoping I can help strengthen their faith so that when they face challenges in the future they will have already learned how to combat them.

I also try to be extremely transparent about the different ways the devil attacks, and specifically on the topic of pride. I read a chapter from C.S. Lewis this week from the book ”Mere Christianity” and it struck my heart in a much needed way and I wanted to share it with you all. The chapter is several pages long so I chose a few paragraphs to share with you instead of its entirety, but I encourage you to google one of the paragraphs and read the whole chapter online as it is a powerful one.

”I now come to that part of Christian morals where they differ most sharply from all other morals. There is one vice of which no man in the world is free; which everyone in the world laothes when he sees it in someone else’ and of which hardly any people, except Christians, ever imagine they are guilty themselves.”

”The vice I am talking of is Pride or Self-Conceit; and the virtue opposite to it, in Christian morals, is called Humility. You may remember, when I was talking about sexual immortality, I warned you tha the center of Christian morals did not lie there. Well, now, we have come to the centre. According to Christian teachers, the essential vice, the utmost evil, is Pride. Unchastity, anger, greed, drunkness, and all that, are merely fleabites in comparison: it was through Pride that the devil became the devil: Pride leads to every other vice: it is the complete anti-God state of mind.”

”Many a man has to overcome cowardice, or lust, or ill-temper by learning to think that they are beneath his dignity- that is, by Pride. The devil laughs. He is perfectly content to see you becoming chaste, brave and self controlled provided he is setting you up in the Dictatorship of Pride. For Pride is spiritual cancer: it eats up the very possibility of love, contentment or even common sense.”

-Chapter 8, The Great Sin

The further removed I get from this recent wave of trials the more I am able to look with clear eyes and recognize the many ways that my pride made that battle so much more difficult. My flares of anger and frustration, every single one of my pity parties, each of my ”woe is me” nights of crying was a tiny spark that my pride turned into a bonfire.

*My pride convinced me we didn’t ”deserve” to be going through so many hard things, all compounded on top of each other. But my faith in God reminds me that these hard things are still part of God’s plan that He hasn’t revealed to me yet. Pride sometimes makes us foolishly think we should be able to share the thoughts of God.

But His Word reminds us ”’For my thoughts are not your thoughts, neither are your ways my ways,’ declares the Lord. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts that your thoughts.’” Isaiah 55:8-9

Faith is being content, even when we don’t get a glimpse at His plan.

*My pride convinced me that I could handle everything being thrown at us, when in reality I was not capable of meeting everyone’s needs on my own. I needed supernatural strength and clarity that only the Lord could provide. I needed a community to surround us and help lift up our arms each time they fell in desperation.

We are so quick to turn away help from others, seeing it as a sign of weakness. But those are actually the moments for us to practice our humility and allow ourselves to admit that we can’t do it alone. This is still very much a struggle for me. In my past I have had moments of people helping me with significant needs, then using those moments as weapons to shame me later. The hurt from these incidents has created such a dark hole within me that I feel the need to savagely protect from being able to grow any larger. It is easier for me to refuse help, knowing that I am preventing future hurt. As twisted as it sounds, that’s something that trauma can do to you.

Isaiah 40:29-31 reminds us ”He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

We were never intended to do the hard things alone. We were never created to do the hard things of life alone. We WILL grow tired and weary, we WILL stumble and fall. It is in those moments that we are called to hope in the Lord and watch His strength be portioned to us. I believe firmly that God will not only freely give us His strength but He will also use other brothers and sisters to lift us up with their strength.

In Exodus 17 there is a story about Moses and the Israelites facing a battle against the Amalekites. The Bible tells us that as long as Moses held up his arms, the Israelites won, but when he put his arms down, the Amalekites started winning. Verses 12-13 tell us: ”When Moses’ arms grew tired, Aaron and Hur brought a stone for him to sit on, while they stood beside him and held up his arms, holding them steady until the sun went down. In this way Joshua totally defeated the Amalekites.”

God could have instantly given a portion of His strength to Moses, but there is a reason He didn’t. Sometimes God chooses to allow a testimony to be written as we watch our brothers and sisters in Christ support our weak and shaking arms. Sometimes our moments of physical pain and shaking muscles are never really about us, but are an instrumental part of a spiritual lesson for someone else. We need to be content in being a teaching tool that God uses in other’s testimonies. What an honoring way to be used by the Lord.

*My pride convinced me that I needed to maintain a reserve for myself and my healing. But In Philippians 2:5-8 we are reminded: ”Have this attitude in yourselves which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross.”

The world screams ”You can’t pour from an empty cup”, but the truth is that it honors God so much when we empty ourselves for others as it is an act that is completely void of pride and can only breed humility within us.

Psalm 16:5 ”Lord, you alone are my portion and my cup: you make my lot secure.”

When we recognize that the portion within our cup is not something we have created, produced, or secured but rather something that has been gifted to us from the Lord it seems so foolish to think we are to selfishly hang on to it.

Oh the faith it requires to empty yourself for others. But the strengthening of your faith that can come from watching God fill that cup again to the brim…simply because He loves us and feels honored by our continual obedience.

Every single day I struggle with this. Lately it seems that when my head hits the pillow there isn’t a drop left in that cup. And the fear of another empty cup the next day can taint my vision when my eyes open the next morning. But when I recognize that the empty cup keeps me closer to God it helps me see that Him giving me just what I need for each day is a blessing. His mercies are still new every morning. This is a verse that God has been laying heavily on my heart this month and I find myself reciting it every morning: Lamentations 3:22-23 ”The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”

I could ramble on and on and on about the lies my pride allowed me to consider over these last 9 weeks of difficulties. The list is enormous and embarrassing. But as C.S. Lewis says at the end of that same chapter from above: ”If anyone would like to acquire humility, I can, I think, tell him the first step. The first step is to realise that one is proud. And a biggish step, too. At least, nothing whatever can be done before it. If you think you are not conceited, it means you are very conceited indeed.”

I want to encourage you to find the hidden pride in your life that has started to become a spiritual cancer. Look at the many ways it has eaten the possibility for contentment. Follow the paths of the sin in your life and trace their roots to pride. I believe that naming sins in my life is one of the most important things I can do, as they serve as an acknowledgment to God and the devil that I am aware and I desire to put them to death.

The true humility that we are called to as Christians isn’t something that we can create. It comes naturally as a byproduct of living a life like Christ. I know I am beating it into your brains but please please please read Philippians 2:1-18 this week. It is literally titled ”Be Like Christ” and is such a great place to start.

Goodness that ended up being a long entry. God sure did have a lot to say. I don’t know who each part of this entry was for but I believe with all of my being that each word on here was ordained by Him for some of you. When I started the blog my intent was to talk about one of the miracles from Matthew. Clearly God had another direction to go.

Isaiah 55:11 ”So will My word be which goes out of My mouth; It will not return to Me empty, without accomplishing what I desire, and without succeeding in the purpose for which I sent it.”

What an amazing God we serve!

Much love,

Leah

Accept Adversity

This last week was one of the hardest ones we have faced as a family, and as you know we have been through some real doozies. After last week’s updates Jake continued to slide in a negative direction with his battle with Covid. We reached a point where his needs surpassed my abilities but after speaking with several doctors we were told he would not be admitted to the hospital based on his oxygen saturations being above 90. We were able to start him on Ivermectin and by the middle of the week he finally started to get a bit of relief in his chest and breathing. Every night he went to bed scared and worried, which obviously alarmed me as well. We kept him hooked to the pulse ox and on a baby monitor so I could hear him if he started passing out again.

In addition to his escalating care, the rest of us all became very stagnant in our improvements. Malachi’s fevers came back and you could tell he felt terrible and weak. I was so worried that his liver would start to fail again with the amounts of Tylenol I was having to run through him to keep his high fevers/seizures at bay. He still is very weak with large, dark circles under his eyes but his demeanor and spirit is so much better.

Levi continued to vomit all week and we worried about dehydration so he ate popsicles for a week straight. Vomiting for him is just so dangerous as he is not able to close his airway to protect it. Because of his frequent vomiting he did not rest well at night, waking up many times to vomit.

I developed head to toe hives as a reaction from the monoclonal antibody injections. Literally all over my scalp, down my entire body, and even on the tops of my toes. It was incredibly miserable and the only relief I could get was from Benadryl. But unfortunately Benadryl clouded my thinking and I wasn’t able to care for the kids, so I had to just deal with the discomfort to make sure their needs were met. It grew so bad that my face and mouth started to swell and fevers started. One of our doctor friends let me do a driveway visit and was able to call in a steroid for me which finally brought some relief. The rash is still there but is no longer painful.

The virus took away my smell, my taste, and the majority of my hearing. I was down to two senses and absolutely miserable but had no one to help take over responsibilities. I had so many moments of desperation and the feeling of being completely overwhelmed. Every night I went to bed hoping the next day would be better but somehow each day was worse than the one before.

There were so many physical, mental, and emotional battles to fight. I am going to speak really honestly here even though it is ugly. I felt a seed of bitterness growing deep within me towards Jake that I knew was planted there by the devil. I was frustrated that he wasn’t able to help me with the boys. I was frustrated he didn’t prioritize the vaccine. I was frustrated he was asking so much of me. I kept repeating this verse over and over in my head, although admittedly sometimes it was through grinding teeth…

”Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others.” Philippians 2:3-4

This verse was such an encouraging fuel for me in caring for Malachi and Levi. And at times it worked for caring for Jake, but then the devil did his “thing” and started to try to pollute those words and use them for destruction. I kept flashing back to the many moments in my lifetime I have had to sacrifice my health, peace, or energy for others. The innumerable times that someone else’s needs came before my own. I started thinking “when will it be my turn to be on the other end of this verse God???”

But this verse isn’t simply about actions. It is about our heart’s condition. We don’t do these things to “earn”, we do these things because they come from a heart that is like His. Humility of mind is clearly something I am still lacking, and this week made that glaringly obvious.

God calls us to serve- even when it is asking more than what we are capable of. He wants our hearts, not just our actions. And sometimes we will be called to give our everything and trust God to refill.

The devil will try to get you to believe in scorecards and tally marks. He pointed out all the times that others took advantage of my kindness and my sacrifice. He pointed out all the times that people who should have been caring for me didn’t. He brought up past hurts and disappointments. He turned my vision away from God and directed it at myself. And you simply cannot do the work of the God if you are focusing on yourself.

The devil started to convince me that I was invisible. And there was so much sadness in this week for me. I was giving 100% of myself, sacrificing my own healing for others and it still wasn’t enough. Every night I ended up sobbing in the living room, sleep deprived but needing to watch my husband on one baby monitor and my medically fragile children on the other. The desperation I felt this week was unmatched by any other.

As the health and life came back into our family my heart also started to heal and I was able to start taking every thought captive again. Jake and I laughed (in a cringey way) about how much this felt like a Job story. Even down to his boils/my hives. I have never related more to Job sitting silently around a campfire, not even able to formulate words in his sadness and pain.

Job has always been one of my favorite books of the Bible. As a teenager it taught me what a relationship with God looks like. It opened my eyes to the nature of God as our Father, bragging about us to the devil. It helped me understand free will. It helped me understand the strategies of the devil. The lessons God showed me as a young teenager from Job were a staggering part of my faith.

I remember reading Job one evening when I was maybe 16 years old and praying that God would help me build a strong enough faith to catch the eye of the devil. I wanted God to be so proud of my faith that He would elbow the devil and say “Have you seen my servant Leah?”

I can’t tell you what God thinks of my faith- especially after a week of weak moments like the one I just had- but I can tell you that the devil has been after our family recently. He has been after our children, after our health, and after our marriage as our children’s needs trump spousal ones. He has been looking for spots of weakness in the armor to attack and it has highlighted some major areas that need some strengthening.

The night Malachi was born they were racing me down the halls into the operating room and the ceiling tiles whizzed by over my head. I knew I needed to pray, but I couldn’t even think of how to start. The Spirit pressed the words from Job in my heart and I recited them over and over again until the anesthesia took me away: “The Lord give the and the Lord taketh away, blessed be the name of the Lord.” That night as I processed this prayer rolling off my lips I convinced myself this was God’s way of preparing me for losing Malachi.

But Malachi lived! And that verse became a part of my song of thankfulness to God.

This week as I reflected on Job’s story again in light of our current struggles I decided to read it again. When I got to Job 2 I read a verse that struck my heart in such a good way: “ Then his wife said to him, ‘Do you still hold firm your integrity? Curse God and die!’ But he said to her, ‘You are speaking as one of the foolish women speaks. Shall we only accept good from God but not accept adversity?’ Despite all this, Job did not sin with his lips.”

Ugh, conviction. That one struck a deep cord within me and I could feel my face burning from embarrassment.

The verb choice there is so important: accept. It implies that it is a decision you make to open your arms to it. To open your arms to the hard things, the ugly things, the detestable things.

You don’t accept simply because you are a glutton for punishment, but rather you accept because you see that God is a refiner. Just as this week did for me, adversity highlights the idols we hold to over God. Adversity pinpoints our weaknesses and our egos and helps us see the ways we still rely on ourselves instead of Him.

Oh how shallow the roots of our faith will stay if we only accept the good from God and never the adversity.

As we travel back towards normal in our household we ask that you continue our prayers for health. We are all very weak and most tasks are much harder than they used to be. We spent the entire weekend sanitizing, doing laundry, and cleaning every surface in our home, eager to open it back up for Bible studies!

Here are some fun and happy photos to end the post this week. We got to enjoy some serious family time, filled with games and popsicles.

Thank you to everyone who sent sweet messages, prayers, and cards. We were so blessed by meals and kindness this week and I truly couldn’t have done it without your help. Thank you for carrying us when we were too weak to do so.

I have so many other things I really want to share with you all, but I am still needing to prioritize time a bit while we struggle to find our normal again (does that exist haha?). I am sure this blog was a jumbled mess like last week, but God can still work through the messy- I trust if He wanted you to hear something specific this week from this entry then He will make it abundantly clear to you. And if you need a devotion this week that challenges your faith in a beautiful way start reading through Job!

Much love,

Leah

COVID Round 2

If you have been reading my posts lately they have been saturated with a gloomy cloud of bad news that keeps following us. Believe it or not, this week life knocked us down yet again with all 4 of us testing positive AGAIN for Covid.

Last weekend Jake kept mentioning how exhausted he was. He spent every free moment napping, sleeping for 12-14 hours each day and still woke up talking about how tired he was. If I am being honest, I was not a trophy wife through that. I was running on 3-4 hours of sleep a night and hearing him whine day after day while taking on caretaker 100% of the time his complaints were becoming a point of contention. I was also getting over a cold and helping Malachi through his low grade fever. I snagged him the earliest doc appointment I could (Wednesday at 3) and tried to help him be as responsibility free as possible until then.

I took Malachi to the pediatrician on Monday where he was tested for Covid and RSV and in the process she did spot an ear infection so he started antibiotics. Both tests came back negative on Tuesday and we continued to monitor the fever (we were 6 days in at this point), which was staying low grade.

Tuesday night was a rough one and I finally got the kids both in bed and laid down in their bedroom at 4:00. I had been coughing and each time it woke up Malachi so I had been sleeping on the floor. About 45 minutes later I heard a faint noise coming from across the house, and Levi heard it as well and started screaming. I didn’t want him to wake up Malachi so I unhooked his g-tube from the pump as fast as I could and snatched him up and out of the room. I followed the moaning sounds into the kitchen and found Jake laying halfway in the master bedroom and halfway in the kitchen completely motionless on the floor. I asked him what was going on and he said “Call 911, I need to go to the hospital.”

I quickly called 911 and tried to figure out what was going on. Jake had gotten up to go to the bathroom in the middle of the night and started to feel woozy. He tried to make it across the house to get me and passed out in the process and when he woke up he was unable to move and could only see black. I checked his oxygen while we waited and it was fine but Jake was unable to even sit up. The EMTs finally arrived 30 long minutes later and came in to assess him. His blood pressure was dangerously low and as they were trying to figure out what was going on Jake started to pass out again. They loaded him up in the ambulance and took him to the ER. I packed a notecard with the medications he was currently taking and a timeline of this sickness he has been recovering from for the last 5 weeks. I also put down my name, phone number, and his social security number so they could contact me with updates in case he was unconscious.

Malachi stayed asleep through the situation and Levi was wide awake after they left. I got him calmed back down and back to sleep about the same time that Malachi woke up. Jake called me about that time to fill me in on the tests they were running (CT, X-ray, bloodwork, viral panel, etc). A few hours later he texted “Covid positive” and I was completely dumbfounded. Jake had already had Covid in late February and it was a legit Covid case- nothing mild.

I immediately gloved up and started disinfecting the house but in my heart I knew it was futile…we had already been exposed through the weekend with him. But the task took my mind off of things so I sanitized and prepped the basement for his quarantine. The hospital hooked him to some IV fluids and got his discharge papers ready shortly after lunchtime. I didn’t know how else to get him home so I loaded up the boys and a fresh mask for Jake and headed to pick him up.

I got him home and helped him into the basement, then washed my hands and got each of the boys out of the car. As soon as I carried Malachi in I could tell he was rapidly declining. I took his temp and he was at 103. At that point Levi was acting normal, but by sunset he also was running a high fever.

I had picked up some rapid at home test kits from the drug store while we were in town waiting on Jake to get discharged. I tested both boys and not surprisingly they were both positive. That night was incredibly challenging, as Jake was alone in the basement, fearful he would pass out. I put a baby monitor down there so I could watch him closely. I offered to move him up now that the kids were positive but he said he was more comfortable down there. The boys were burning hot and fever reducers weren’t budging the fevers. And I was running on maybe an hour of sleep from the night before. Everything just hit SO INCREDIBLY FAST! I set up camp with the kids in the living room and we did the best we could that night. I started notecards for each, trying to keep track of everyone’s medication routines. In addition to fever reducers and now added vitamins, each one of us is on at least one prescription antibiotic for the crud we have been dealing with leading up to this. Add into that Malachi and Levi’s regular medications. On our worst days I administer 45 different medications throughout the day.

I had antibodies from round 1 of Covid and also am fully vaccinated (since March). I was so hopeful I could stay virus free but by Thursday it was clear that was not the case. I administered a home test kit Thursday evening and was positive. By Friday the virus and sleep deprivation caught up with me and I was really struggling. Jake was slightly better but still struggling. Levi and Malachi were still randomly spiking fevers back up, and Levi was not holding down any feeds. We both lost our taste, smell, and appetite and a mental fog covered us both.

I had been updating Facebook as energy would allow and got a message from someone asking for us to contact them about the monoclonal infusion antibodies. There was a center about an hour from us that was offering them without a doctor’s prescription and even though the schedule was full they so kindly offered to contact us if they had anything open up on Saturday. They called us the next morning and we had appointments at 12:00! This was truly a God thing for Jake and I!

I felt safe enough to drive so we loaded the four of us up and made our way there. When we got there Jake was the first to get called out of the car and on his way out he managed to shut his finger in the door. He was in such a brain fog he couldn’t figure out what to do and knocked on the window for me to open the door and release his finger. By the time I figured out what was happening he had opened the door himself and I could tell he was in a lot of pain. I asked him, “Are you about to pass out?” And he shook his head no but as he walked off I could see he was struggling.

By the time he made it to the folding chair he was ready to pass out and they grabbed him ice. Then he apparently thought he was going to vomit so they dragged a trash can over. When he was stable enough they administered 4 subcutaneous shots into his belly with the antibodies and got him safely back to the car. My turn was much less eventful and after waiting an hour for side effects we were released to drive home. Jake said he could tell a difference within the hour. I am writing this about 32 hours after my shot and I feel so much better. Definitely still sick but definitely feel like I am winning the fight.

The boys are so so so tough through this round. It has been MUCH worse than the last Covid they had. They have been miserable, Levi waking up crying multiple times a night saying “Me SIIIIIICK” and burning hot with fever. Malachi’s seizures were out of control for the first 2 days; he was seizing harder and longer than I have seen in a long time. He was depleted of all energy and I was terrified that running these fever reducers so intensely might re-trigger his liver failure yet again.

So as of now, Sunday evening, here is where we are all at:

Jake- last night he had another bad night so we hooked him to a pulse oximeter overnight with the baby monitor pointed at the numbers for me to see across the house. His oxygen stayed above 92 throughout the night and he asked me to plug in the oxygen concentrator just in case. He has a tightness in his chest that was much worse pre-antibodies. His taste and smell is starting to come back.

Levi- is doing really well. Last night he slept decently for the first time in awhile. He has also gone all day only vomiting once, but we are running his feeds very small and slow for now. He has been fever free all day and not required any pain meds. He is definitely tired of being in this house but we are all too feverish to go outside and play.

Malachi- is still struggling. His oxygen levels are staying around 94 and his fevers have been controlled today. His seizures are calming down to his normal and he has been resting better the last two nights and taking naps throughout the day. He has not thrown up at all but has a lot of intestinal issues with this one.

Leah- since Thursday I felt like I had been hit by a truck. Very sore, running fevers, lots of head and sinus pressure. Thursday through Saturday were very bad but today I am feeling like I am on the other side. I am sure the vaccine shortened my symptoms based on what I am seeing with the boys. I have lost all smell, taste, and appetite and today I have been coughing so much less.

Aside from the physical challenges this week has brought, the mental challenge has been so much harder. These past few weeks have absolutely drained us physically, emotionally, and mentally. To have another big catastrophe hit our family is just too much. We have been trying so hard to stay focused on God but all of our attention has been focused on minute by minute care.

This weekend I received a message from a college friend and it had a photo of her mom who is currently struggling in the ICU with Covid and her husband by her side praying. The caption said “They are calling out your crew by name and I had to snap this picture of it. You have been on all of our hearts and my mom keeps asking for updates.”

Seeing the photo took my breath away and bubbled up so many emotions. I showed it to Jake and read him the caption and immediately he started sobbing. He told me that a few hours before he had been trying to pray but didn’t have the energy or mental clarity to formulate words. He said God pressed on him “It is not meant for you to pray over this, but for others.” When I shared the photo it was such a faith moment for him to see others that we have never even met lifting our family up to the Lord.

We have had lots of God moments this week, but right now I need to focus on my family. I hope next week we will be able to share stories of our healing with you. Until then, please continue to lift us up. We are so so so weary. We feel that we are under so much spiritual attack. We need peace.

We have had several people asking for tangible ways to help. Our church family has set up a meal train for our family so our family so food is covered. We have had friends mow the grass, drop off slushees, and bring goodies by. We are so thankful for our support system and have all of our needs currently met. We have never been one to ask for help, and still cringe at the thought, but also recognize that there is joy in helping others. If you want to help out with medical bills from Jake’s hospital ride, surprise gifts for the boys, or a movie rental on Amazon for them you can reach out to me at jacobandleah@gmail.com but please know there is no pressure and we are not in desperate need of anything at this time. As I always promise, I will be transparent if we ever reach the point where we are unable to pay our bills. I just know many of you have contacted us about ways to help.

Sincerely,

Leah

Camping In The Storm

Malachi is officially out of liver failure! His enzyme count was 58 from his blood draw last Friday. Praise the Lord!

This week Malachi and I headed to Nashville for his re-scheduled appointments with his surgeons. Originally this trip was going to happen in late July and last 2 days, 3 nights. Malachi was ecstatic about this trip and when he ended up hospitalized instead he was very disappointed as we had already planned out the itinerary.

With Jake back in school we couldn’t really afford to take the full 3 day trip so I worked with the hospital to get his appointments on the same day on the two different ends of Nashville. Jake got a sub for one day so he could stay with Levi and Malachi and I left for Nashville late Tuesday afternoon.

Since we had less than 24 hours for our trip I tried to pack in all the adventure I could so Malachi would feel like we hit *most* of the things from his original itinerary. On the way to the hotel I stopped and picked up a Crumbl Cookie that just his style!

He absolutely loved it! And since I was on the recovery end of a cold he got the whole thing to himself! Too rich for my blood anyway.

We jumped on the hotel bed and then snuggled up to watch Frozen 2 together. There are a few movies we don’t watch often at home due to their intense content and having Levi around so this was a special treat for him.

We drifted off to sleep but the new environment and the anticipation of the adventures kept him up most of the night. Early the next morning we headed to our first appointment with the spine surgeon at his office. He used to work at the hospital one day a week and we would schedule our appointment to hit both surgeons at the same place on the same day. But he switched with a coworker and no longer did hospital appointments so we snagged one of the early morning ones so we could get in and out quickly.

My plan failed and we sat in the waiting area for 1.5 hours before finally getting called back for x-rays. You all would be shocked at how many different pronunciations we get for Malachi.

Mall-ah-chee

Mall-ee-chee

Mall-ack-ee (my personal favorite)

But this time around we heard a new one Mall-ee-she and it has a very foreign flair as it rolled off her tongue.

Malachi did great for X-rays as he always does and we headed to a room to meet with the doctor. Malachi’s spine is at a 45 degree curve which is still in the safe range. This is only 1-2 degrees worse than last year so we are happy. He said that often puberty is when they see this biggest change that warrants surgical correction. So until we see major change we will continue to monitor annually. He offered switching us to the hospital provider so we could avoid the two separate appointments and I very gladly agreed. I had planned three hours between appointments but at this point we were going to be cutting it close to make it across town to the next one 45 minutes away.

Malachi’s orthopedic surgeon is one of our favorite specialists and has incredible bedside manner. Unfortunately Malachi’s brain is telling a few foot tendons to tighten up and they do need surgical intervention. I explained about our recent medical issues, and particularly the liver failure, and we are going to try to postpone this surgery for a year from now if we can get away with it. If it gets much worse we will take him sooner. It will be an outpatient tendon release which he has had done before. “Routine” some may call it haha…we all know that routine doesn’t always happen with Malachi.

One of the oral medications Malachi was on pre-liver failure helped relax his muscles but we sadly had to stop that one since it metabolizes in the liver. So we really have no other options except for surgery. What is frustrating about CP is that these tendons were totally fine a year ago. His brain just recently activated those to pull tight. It is a battle he will fight for his lifetime.

With all the medical appointments done we had just 3 hours for some fun before heading back. I let him decide if he wanted to go to the zoo or the Rainforest Cafe and he voted to go to the Cafe. They seated us right next to the tigers, which he was giddy about. What we didn’t know is that the tigers were malfunctioning and instead of roaring noises they mechanically squeaked, like they needed some WD40. I told Malachi it was the baby tigers squeaking at him which seemed to be enough to keep him happy. His smiles in all of these pictures are such genuine smiles.

He truly enjoyed every minute there and we walked around to visit with all the animals and look at the fish. We stayed through 2 of the thunderstorms, covering his eyes for each one to keep the flashing lights from triggering a seizure.

We went from there to Build A Bear and Malachi got to choose the type of animal he wanted to make and an outfit. He chose a bear and a Batman suit and was so happy with the finished product. He was super sweet and this picture is one I treasure so much.

Then he went to the Disney store to pick out matching tshirts for him and Levi. He is very opinionated these days and having the power of choice is very important to him. Levi had picked out some things for Malachi on his Ohio trip so we had put that one in the original itinerary as silly as it sounds.

Finally we went into the middle of the mall and took a ride on the carousel. The only seat option for us to sit in together were the circular teacup seats. When the ride began it swirled us around so fast and hard I thought I might puke. My reaction set Malachi into giggles and it is safe to say only one of us enjoyed that ride!

We made it back home by 9:00 Wednesday evening and Malachi relayed all of his adventures to Jake and Levi, giggling as we talked about each one.

Thursday we recovered from our travel day and played on the playground with friends.

Unfortunately Friday evening Malachi started running a fever and has had one since. He and I also developed pink eye in both eyes so we are taking antibiotic drops and trying desperately to not give it to Jake or Levi. I am suspicious of an ear infection with Malachi, as driving through the mountains to Nashville has always messed with my ears. Levi has also frequently developed ear infections after Nashville trips. We will likely end up at the pediatrician tomorrow just in case since he can’t communicate the source of pain. I thought he was getting sick last weekend but aside from a sore throat it never progressed into anything.

Levi is still doing great. He is going a bit stir crazy in the house and finding lots of mischief to get into but he is also growing in so many ways. His vocabulary is so big right now and he asks so many questions. So. Many. Questions.

This past month has been a very difficult one for our family. We had gone through a season of calm, with very few unexpected medical issues and very few hospitalizations. I actually told a friend a few weeks ago that things had been eerily calm and I suspected a storm was brewing.

It was exactly one month ago that Malachi and I headed to the Emergency Room for his stomach blockage. Through all of that, as intense as it was, I felt secure in the hands of God.

As the weeks have progressed we continue to get hit with waves of sickness, new upcoming surgeries, and so many medical/medication changes. Right now I am administering 35 medication doses daily. I am keeping logs of all them to try to keep everything straight and life takes my full focus to make sure I don’t make a deadly mistake. Malachi has had diarrhea for over 30 days due to a vitamin for his liver. Each day asks a lot of each of us.

Jake and I had a raw and honest talk this week of how much we feel like we are under attack from the devil. Jake is still very weak recovering from whatever junk had ahold of him but the mental hold on us right now is pretty strong. We are each giving 100% but it doesn’t feel like quite enough.

We find ourselves craving normal. Even normal sickness. Just simply normal.

A normal weekend. A normal night of sleep. A normal hour. Our normal 13 daily medication doses. Normal poop.

We encounter storms often in our medically complex world but there are times we are called to set up camp and live in the storm for a bit. We call these the Job moments. The days when you can’t help but wonder what else is about to happen. We still fully believe that we are in the hands of God, but sometimes His hands pause in the storm for a bit and we begin to feel the elements.

When I am camping out in the storm I tend to have a looser grasp on my inner thoughts. This week Malachi slept one morning a bit longer than normal. I was up with Levi and watching Malachi sleep on the monitor and I couldn’t help but wonder if he had passed away in his sleep, as it was so odd for him to sleep that late. I started to go down the mental road of “what if” and it made me sick to my stomach.

Bracing for impact sometimes feels harder than the impact.

And there is so much danger in the bracing.

We aren’t called to focus on the what ifs, as they strip us of our faith in God and His plan for our lives.

But I admit that when I am camping in the storm I slip into those thoughts a tad bit easier than when I am simply just passing through the storm. I give footholds to the devil so easily that allow him to climb the walls I have put up against him in my life.

I am trying desperately to stay Jesus focused right now and just tonight I have had some sweet and tender moments with Levi that remind me of the importance of modeling a Christ centered life to my children. When I am in a dark place I try to be very intentional with talking about and to Jesus. I have a few Levi stories that might make you smile…

The first one is from a few minutes ago (yes, 12:45am) Levi stole my iPad and started pretending to type away. He looked at me and said “Me blogging mommy!” I asked him what he was blogging about and he said “Jesus!” What is special about this story is that he doesn’t know what I type on here, but that is what he wanted to write about.

Earlier today we went for a drive in the car and Levi said “Mommy, praise and worship music!” My car radio has been broken for months so we cranked up some worship on my phone and he sang his little heart out. I didn’t even know he had those words in his vocabulary, so that one touched my heart for him to be so specific. I even asked him: “Do you want Veggie Tales music?” And he said “No, praise and worship!”

The final moment I am hesitant to share with you because I am opening the door to some major parenting judgment, but it made me laugh a bit so I will end on it….I am not bragging about my methods on this one so don’t feel the need to correct me.

When Malachi is sick we set up a sickness station in the living room. Because of his brain damage when he gets fevers they trigger hot spots in weird placed on his body. So the only way to accurately get a temp for him is rectally. In the “sickness bin” I have a rectal thermometer that we clean with alcohol prep pads after each use. We keep these out of Levi’s reach but he has been extra fascinated with the bin this weekend. He has also learned how to scale things to reach whatever he wants.

Knowing this, I told him on Friday that if he ever touched that specific thermometer (Malachi’s butt thermometer we call it- super creative huh) that he would likely get very sick and have to go to the doctor. He has been popping everything into his mouth and the mental pictures I was seeing were not pretty. He has so much PTSD right now from doc visits and COVID tests that I assumed that would be enough to squash the temptation, and it did for two days!

But tonight as I typed the blog the little rascal climbed up on a bucket he snuck from the playroom and grabbed the thermometer. I turned around to see him examining it closely with his hands. I panicked and shrieked and he immediately started yelling NO DOCTOR NO DOCTOR!!!! I took him in to the bathroom and scrubbed his hands which he says is the only part of him that touched it. He was in hysterics by the end of the hand washing, convinced that he was going to have to go to the doctor. He was so upset that Jake came running out of the bedroom from a dead sleep to see what big catastrophe happened.

I tried to calm him down and reassure him that he would be okay but he wasn’t hearing any of it. I explained that he probably wouldn’t have to go to the doctor but he couldn’t get ahold of his emotions. I told him that we couldn’t take back touching the butt thermometer but we could pray and ask God to keep him from getting sick from it. He was all about that idea and clasped his little hands together and poured his soul out to God. His intensity made me smile (which I obviously hid from him) and we prayed that Jesus would protect Levi from the butt germs and help him stay well enough to not need the doctor. We also prayed that God would help Levi listen and obey much better.

I never imagined that I would verbalize a prayer to God for protection against “the butt germs” but here we are.

I snuck a photo because I knew I couldn’t describe the intensity of his little prayer any better than a visual.

Sweet precious little boy.

But as I look at this photo I can’t help but think of the smile on God’s face to see a 3 year old turning to Him in a moment when he is scared and feeling helpless.

And I am also challenged to continue laying things at the feet of Jesus and making sure I model that to my children. We weren’t made to carry heavy things. What a beautiful lesson to teach my children before they encounter the heavy things this world has to offer.

Please pray for our family. We are ready to pack up our campsite in this storm and move out of it’s reach. But we are waiting (impatiently) for God’s timing to match ours. Please pray for our endurance and strength, both mentally and physically. Pray for health in our family and that we all are back to 100%.

Thank you for taking time to check in on our family and listen to my ramblings.

Love,

Leah

Acceptance=Surrender

I have mentioned the post-hospital exhaustion to you many times before, and this week it overtook us like a wave. Malachi’s stamina for anything that takes a lot of thinking or physical exertion is very diminished so we spent most of the week taking it easy at home and catching up on all the “things”…phone calls with insurance, cleaning, laundry, grocery pick ups, and paperwork. There is an incredible amount of paperwork in the medical momma world.

His new medicine regiment is still taking a toll on him. It makes him more lethargic, but also keeps him from sleeping which I can’t wrap my head around. He is sleeping only 4 hours each night. His seizures are also pretty nasty these days, but more on that in a minute. He still doesn’t have his color back yet which makes me a little nervous.

Now Levi on the other hand has the energy of a thousand Mountain Dew drinking children and has been doing circles around the rest of us. I had the house completely mopped and cleaned up and on Thursday he accidentally dropped a can of Pepsi from overtop his head. The can exploded and started spinning circles, and before I could jump on it like a live grenade it had done some major damage. It left a trail of Pepsi spray on all walls and furniture within 15 feet of the can. It somehow managed to spray everything at floor level and all the way up to 8 feet tall as it gained momentum. It also sprayed each person and dog in the house.

As I surveyed the damage I literally had to start laughing. What a metaphor for our lives right now. One day you are feeling good about how things are going, then BAM a Pepsi can hits the floor. I didn’t even know where to begin on that cleanup process.

This week I have been so incredibly thankful for our dogs. They have taken the brunt of Levi’s attention and built up energy, and done so with such submissive kindness haha. Shiloh even earned a silver medal from Levi.

I am also incredibly thankful for the playground and the trampoline. They have been the highlights of our days and having those things right outside the front door is such a blessing. This happy video will offset the other one that is about to come:

Malachi had another liver enzyme check on Friday but we have not heard the results yet. His seizures are very aggressive and lasting up to 4 minutes and I am so desperate to get him back on some of his former meds. We have to let his liver heal some more before that can happen, but the helpless feeling seeing him get stuck in such rough seizures is difficult.

But words cannot describe how happy Malachi is to be back at home with his family and his dogs. This is most definitely his happy place. Me too buddy, me too.

On Thursday we had a scheduled appointment with the Cerebral Palsy Clinic at the hospital. This was in place pre-chaos so it worked out to get some of Malachi’s bloodwork done while we were there anyway. The CP Clinic is a group appointment where each of the boys gets to see the Neurologist, Orthopedic Surgeon, and Physical Therapy for an assessment and measurements on muscle tone. They called the day before and told me that they needed baseline x-rays for Levi’s hips, feet, and spine so we were told to get there a litter earlier.

Levi’s PTSD has been ramped up a bit with his recent RSV fight. While Malachi and I were inpatient at the hopsital Jake had to take him to the pediatrician to figure out why he was sick. They ran all the tests, including a Covid swab, step test, and a blood draw. So when I mentioned the doctor again he immediately went into high alert, even waking up the nights before the appointment in tears yelling “NO DOCTOR MOMMY”.

He cried the entire way to the hospital and I explained that they were going to take pictures of his feet, hips, and back and that it wouldn’t hurt. X-rays are a new concept for him and oh boy what a process that was. Add into the mix that the hospital wouldn’t let Malachi into the x-ray room and told me to stay with Malachi and they would take Levi alone for his X-rays. Ummm….that’s a hard no. He was already losing his mind at this point so much that he was vomiting in the waiting room. The idea that I would make him go in without me by his side was just not settling well with me. And when he heard their suggestion for me to stay with Malachi, Levi grew even worse. I turned on music for Malachi and decided that he would just have to stay in the waiting room alone for a few minutes and prayed that he wouldn’t have any seizures. Last minute they were able to snag a nurse from another department to sit next to Malachi. I understand not wanting to expose kids to needless radiation, but we are talking about Malachi who has had hundreds of x-rays, not to mention CT and MRI. I don’t often ask for exceptions but this one warranted it, specifically with how out of control Malachi’s seizures have been.

Here is a video of the madness. I was sitting in the waiting room catching vomit from a hysterical Levi and listening to Malachi laugh at his brother. I took a quick video to share with Jake later as I knew words wouldn’t adequately describe the scene we were creating in front of all the other patients:

When we finally made it up to the exam room to meet with doctors Levi was still a sobbing mess and Malachi went into another large seizure. The neurologist witnessed this one firsthand and made the decision to increase one of the new meds we put him on. He wanted me to use rescue meds on Malachi (a medicine we keep on hand for seizures lasting longer than 5 minutes) but when that happens I have to call 911 and take him legit into the hospital ambulance style because it slows down his breathing and he needs oxygen support. Thankfully by the time we finished that discussion Malachi started to pop out of his seizure.

Funny side note- the orthopedic doctor was new to us and asked “Are they twins?” I must have looked at her like she had two heads because she immediately retracted the question. I have realized over the years that doctors quickly try to find categories to make things make sense in their heads when it comes to abnormalities. We often get asked if they are adopted since we have two with such varying medical issues. On the night that Malachi was born the hopsital staff asked me dozens of times what I had been doing that weekend, trying to find something that would line up with a placental abruption. I told them that we took the youth group caving and somehow it got in my file that “Mother fell while caving.” All of the oddities surrounding his birth were attributing to me “falling” which was something that never happened. But in their minds it was an explanation that made sense so it was declared as fact. This was such a sore spot for me, as it removed the urge from them to figure out what ACTUALLY prompted the abruption. Thankfully my OBGYN knew better and prepped Levi’s pregnancy accordingly; I abrupted spontaneously again with him as well.

After our appointment we went down to the blood lab to get his liver enzymes checked. While we were in the ICU Malachi infiltrated at least 4 IVs (blew the vein they were in). Finding a vein to even poke for blood is very difficult right now so it took a few sticks before we got enough for his sample. Malachi is so incredibly tough though and rejoiced alongside of us with a sweet smile when they finally started getting some flow.

Late Thursday evening Malachi and I started showing signs of sore throats, which was super disappointing since we had stayed away so long to prevent catching what Jake and Levi had. Thankfully it hasn’t progressed into a full blown cold, just a menacing sore throat for now and it seems to get better each day. On that note, Jake has continued to struggle with the after effects of his cold- it has officially been over three weeks since his symptoms began. He went to the doctor on Saturday for an ear infection and also a Z pack of antibiotics. And I know you will ask, but both Jake and Levi were tested for Covid and it was negative (Levi at the start of his sickness and Jake on Saturday).

Malachi and I are scheduled to be at Vanderbilt late this week but will be letting our symptoms and health dictate that trip.

Needless to say, it wasn’t a week full of beautiful moments and rays of sunshine. It was a pretty difficult one, each day focusing on just making it to bedtime. When Malachi is only sleeping 4 hours a night it means the days often blur together and having multiple days of that can mess with my psyche.

This week the Spirit continued to put the same verse on my heart:

”I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all things through Christ who gives me strength.” Philippians 4:11-13

I know I talk a lot about contentment on the blog and how it is something we often have to choose. This was definitely a choose contentment week as things weren’t as easily accepted as “good”. But these words resonated with me this week as I reflected on this past month of ups and downs. In the last month I have been in need. I have been hungry. I have been living in want. And as our minds naturally do in those dark days I was drawn to the “living in plenty” moments and the “well fed” moments for my comparison.

But contentment isn’t meant to be an easy and natural thing, as it is not the same thing as joy. Contentment is choosing to be satisfied with things just as they are. And this cannot be accomplished apart from God.

Acceptance of the hard things in life cannot be done apart from God. We often see acceptance as surrender…but isn’t that what faith does? Surrenders our ideals to God’s plan.

But like Paul says in this verse, we have learned the secret…

”I can do all things through Christ who gives me strength.”

Before children I always used to apply this verse to my moments of triumph and victory in something. It was my way of giving glory back to God and acknowledging Him in my success.

But now I apply this verse in my moments of human failure. It my “end of the rope” moments when I have nothing left to give. It has become a heartfelt prayer to Him, crying out when I have nothing more of my own to offer a situation.

In life there are lots of things that you can say you will never be able to do. I could never _________.

But there are things in our life that we were never meant to do alone. There are things that you simply cannot do apart from the Lord.

When God comes alongside of you in your weakness and shares His strength you will most definitely find an inexplicable contentment knowing that He is right by your side.

I am rambling…and totally recognize that haha. I hope that you take time this week to read through Philippians 4 and see what God wants to highlight in your life. It is one of my favorite chapters and I have memorized most of it to help me through the hard moments in life. If you have never experienced God speaking to your heart through scripture I really encourage you to take time to read this chapter and watch what He can do!

Please be in prayer for our family still. We are still in shambles a bit and need a solid week of health and strength to get our footing back. And please continue to pray for Malachi’s liver health so we can get him back on some seizure meds that will work.

Much love,

Leah