This week little Levi and I ventured to the hospital to meet with his neurologist. He is always anxious beyond what words can describe when we go to any doctor appointment so I told him I needed to go to talk to the doctor about Malachi and asked if he would come along. I told him we would make it a date and have Chick-fil-a after and that sealed the deal.

The neurologist watched the video we had taken of Levi’s seizure and said with 100% confidence that it was one. He said two or more seizures in a lifetime warrants a diagnosis of epilepsy so two in one day was without a doubt an immediate diagnosis. Levi has complex partial epilepsy and started a medication on Wednesday to help control these. Oddly enough, with Malachi’s four seizure types this is a new form of epilepsy for us and a new medication.

A very well earned kids water. His favorite!

For the first week he is at a lower dose and will double it on Wednesday. It has made him very emotional and he swings from one end of the spectrum to the next very quickly. He is having a hard time regulating his emotions and his anger had been explosive. This medication can also potentially affect his sodium levels so he will start doing regular labs to check those levels. I am dreading this for him.

The neurologist didn’t seem to think that the stuttering that also started the same day as the seizures is related but I have such a hard time accepting this. The seizures are generating from the left side of his brain which is also the portion that controls language. The doc also suggested an updated EEG and sedated MRI for informational reasons but since we have done those recently I politely refused; the results would not change the treatment and we have already seen a snapshot of what is going on inside of his brain. We have been aware of Levi’s 5 damaged spots inside his brain for several years now and this is just a ”symptom” of that damage.

To be honest, I handled the diagnosis part decently. I had more of a breakdown when I witnessed the seizures since I felt us going down a path I had been before. There is this sinking feeling in your gut when you witness a first seizure…like butterflies that make you want to vomit. I remember the exact spot I was in when Malachi had his first seizure, like my brain took a snap shot of that moment, and that gut feeling comes back when I picture it. The same emotions came over me when I watched Levi’s first two seizures last weekend.

There is always comfort in having a plan. It is the ”let’s wait and see” situations that bring me the most turmoil, so while I am so incredibly disappointed that Levi’s brain is struggling I am thankful we have a plan in place. We have been watching him 24/7 to make sure we don’t miss another episode as he could very easily hurt himself during one by accident. We take turns with each boy, as Malachi’s seizures have been active at night lately too. I am so glad Jake has a break from school as this would have been a very hard thing for me to get through alone.

Levi has been doing a lot of imaginative play lately and started doing magic tricks with his magician costume. He is as cute as a button and I took a video to share with you:

We had been holding our breath all week as we inched closer to Christmas Day. Inevitably something always happens on the major holidays. We made it to the night of Christmas Eve and planned to head to a friend’s house for a Jesus birthday party. Before we left I asked Malachi if he was excited about going and he signed ”no”. This is so odd for him so I took his temperature and it was a perfect 98.6 so we loaded up and headed to the party, hoping he would perk up when we got there.

After a few minutes he had a pretty big seizure that lasted much longer than normal. His back heated up within minutes of the seizure and I took him back home where his temp registered at 101.5. The fever broke by the next morning which made me wonder if we were dealing with a brain malfunction rather than a sickness. But Christmas morning his oxygen saturations started dipping and we spent most of the day trying everything we could to avoid going to the hospital on Christmas.

Last night he declined pretty rapidly so I ended up putting him on two liters of oxygen and staying up most of the night watching his saturations. By morning he was slipping into hypothermic ranges (96 degree body temp) which means his brain was going haywire and definitely fighting something. Jake also started complaining of some symptoms so we are assuming it is viral.

We are at a point where we are evaluating each hour whether or not I need to take him in. I don’t think I am emotionally prepared for another ER trip quite yet, let alone another inpatient admission so join us in praying against more pneumonia. I just changed out his shirt, tape, and cannula and he gave me a smirk at the idea of putting on his new Thor shirt.

We aren’t huge ”Christmas” people…I know that sounds so bizarre. I think the premise of celebrating the birth of Christ is so pure, but our world pollutes it with an underlying edge toward selfishness and materialism. When I step back and try to look at the holiday through the eyes of God I have a hard time finding the God glory among all the self glorification. I am on a journey with this one….still not firm on any stance, but on a journey with it and what I want the holiday to look like for my family and trying to be guided by the Holy Spirit.

But we do the four gifts: something you want, something you need, something you wear, and something you read. Levi also had a new bike with pedals hidden in the bedroom.

We spend time each holiday season packing up our excess toys and getting them into the hands of those that need them. It is an easy avenue for me to have conversations with the boys about looking for ways to be Jesus to others, and the older they get the more fun this “secret project” is. This year Levi opened up the cutest little bike and when he couldn’t easily master it he told me ”Give it to a kid that needs it.” And walked off. I am proud he is starting to think of others- although I think his generosity in this case was fueled by frustration. He did thoroughly enjoy the water bottle that came with it and says it is his favorite gift. Malachi’s favorite gift was a switch adapted train that spits out dominoes in a line and some superhero muscle shirts.

On a sidenote, Malachi officially got his ”Spiderman theme” this week. Jake and I crafted some wheel covers and added some superhero hands and a cape. He is smitten.

We received the bill for this chair this week and it was nearly $17,000 pre-insurance! Unbelievable!!! Anything marked ”special needs” automatically gets marked up. When we looked up Spiderman wheel covers they were $140 per set. We were able to make these and strap them on for about $20. Such a broken system.

Let me throw an old photo your way that made me smile this week. This is chubby faced Malachi when he was the same age as Levi.

I have had a few people ask about our family service project. We did letters and gift cards for some PICU/NICU moms this year and the boys each helped me sign the cards. Levi asked a lot of questions and I brought up photos of him in the hospital his first Christmas. We prayed over the cards as a family, that God would get them into the hands of the moms that needed the hug from a family that has been there and done that. My heart truly hurts for all of the moms in the hospital on Christmas- it is such an isolating place to be.

So let’s talk honestly about Christmas. I was on the verge of tears most of the day but couldn’t seem to pinpoint why. I so desperately wanted a normal Christmas Day for the boys, but unfortunately it was a bit chaotic. Malachi was feeling too puny to really enjoy opening his gifts and Levi’s emotions were way out of sorts. Yes, we were home and not in a hospital but oh how hard it was to process the disappointment of a drama free day.

Late that night I was looking through the few photos I snapped throughout the day, disappointed that my Christmas didn’t look like everyone else’s. The comparison game goes into overtime big time, doesn’t it? I fight the comparison issue on a daily basis but on holidays our loss of normal seems to be rubbed in our face (coming from the perspective of a grieving momma).

As I flipped through the photos I found one that I didn’t take. And it stopped my pity party immediately as I studied it.

This was the day through the perspective of a four year old and his sweet little toddler foot. So much contentment in this photo. Watching a movie all lounged back with his big brother, waiting patiently to open those presents under the tree. But the biggest thing that caught my eye was the reminder on the wall ”Consider it all joy”. It was the words I needed to read to remind me that we have been given the unique blessing of trial after trial, and seeing the hand of God over and over and over again in the lives of our boys.

“Consider it all joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance . Let perseverance finish its work so that you may be mature and complete, not lacking anything.” James 1:2-4

What a gift this journey has been. It has shifted my perspective in ways that a normal life couldn’t. It has made me fall on my face in front of my God, relying completely on Him to sustain us. God has gifted us with perseverance through our many trials.

One of my Facebook memories popped up this week and it was a blog entry from Levi’s first Christmas in 2017. That entry can be found here:

https://miraclesformalachi.com/2017/12/25/the-year-of-the-lords-favor/

We were just a month into his journey and we had just attempted an experimental surgery to fix his airway- one we would soon find out was a failure. But as I read the longings of my momma heart I can’t help but feel them today as well as we enter into a new year. And proclaim them over our family.

“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor. Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”

Isaiah 61

I pray that when people look into our lives they can see that we live out ”consider it all joy“. That we can find true happiness, even in the ugly parts of life. I pray that people will be able to see Jesus in our family and in the testimony of our children. I pray that the many blessings we have, even the obscure and hard to find ones, will be seen by many and point them towards our God.

May God reveal Himself to each of us as we enter into a new year, and may we have hearts that are soft enough to be molded by Him- even in the trials.

Much love,

Leah

I am happy to report that after our required quarantine for Malachi he tested negative for Covid. His seizures continued to be aggressive throughout the week and he shifted his bedtime to 4am but we are slowly lowering the number for both of those things.

When Malachi and I had to make a late night run to the Emergency Room on Thanksgiving Day I packed my hospital bag so I would be prepared to stay for a few days if needed. After our one night stay I hadn’t made much of a dent in it and decided to set it in the corner in case it was needed again. Every time I walked past the bag I felt a mix of emotions; there is a sense of security knowing it has all the things I need in case of an emergency but also serves as a reminder that I have to live in a state of ”what if”.

It has been over two weeks but each time I head to unpack it my spirit has felt so unsettled about doing so. Jake is off for Christmas break and I decided that this was the week I would unpack the bag. Living with the lingering fear of the unknown is not a healthy place to settle in.

Saturday afternoon rolled around and Levi woke up abruptly from a nap. He looked up into the air and aimlessly tracked something we were unable to see in an odd trance like state. His arms reached out to the side as if he was reaching for unseen things in a very unnatural way. My stomach dropped as I watched his weird movements and then watched his legs give out from underneath him. I dialed 911 but before I hit the call button I decided to try to get him to snap out of the trance and after one minute he started to respond to us.

For the next several hours he complained about how tired he was and couldn’t seem to keep his eyes open. We went to a public place with mild noise and he started crying saying ”Too loud momma, me go home.” When we got home he threw up his bolus feed right after we sent it in but then started to perk up a bit. Jake and I recounted the event that we witnessed and decided maybe he was sleepwalking and that we would watch him closely, but as much as I wanted to believe that was what we were dealing with my gut told me something else was happening.

Later that evening Jake put Levi to bed and thirty minutes later Levi sat up and started the same strange movements and trance-like state. He also started smacking his lips and doing a few other motions that are very common with seizure activity. I took a video to share with doctors and grabbed that backpack to head toward the ER. This second event also lasted longer than a minute and he immediately fell asleep after.

Full transparency here…I did not handle this well. Having two medically complex children is so so challenging. But knowing that they both are dealing with seizures, especially when they sleep, hit me like a punch to the gut.

The nurses and doctors at the Emergency Room who witnessed the video felt sure that Levi was having seizure activity. Their typical plan for treatment in the Emergency Room for seizures is to do a sedated MRI and an EEG and hope it can catch another seizure while he is there. The entire night was a nightmare as we dealt with Levi’s medical PTSD in full force from just being in the ER. They put us in a shared room and the nurses and doctors continues to stream in and out of our room to see the other patient, each time setting Levi into a panic scream thinking they were coming in for him.

It was nearing 6am on Sunday morning and we still were sitting in the ER with no progress toward a solution. They suggested we wait until the morning shift could come and get the tests rolling but we opted to leave and follow up with Levi’s neurologist on Monday. I did ask them to draw some labs to rule out any blood sugar issues or any imbalance that may have caused it but all labs came back clear.

In an odd connection, Levi also started stuttering the same day of the seizures. I am not sure if this is related at all, but I can’t help but think there is a connection.

I think one of the hardest parts for me in emergencies is the drive to the hospital. When I am in the hospital or at home dealing with an emergency I am distracted from my emotions or from dwelling on the situation. But in the car I can’t help but process, and that is always when the emotions come.

I flashed back to that same drive, in the back of an ambulance pregnant with Malachi and feeling every bump in the road and praying that the baby inside of me would live. I flashed back to the hundreds of time we have driven that exact same path to the hospital for surgeries, appointments, emergencies…and I let the emotions pour out of me.

When we got home Levi and I crashed but I still couldn’t fully rest, worried that he would have another episode. The boys were in the church play early Sunday morning and as much anticipation we have had towards that I knew we needed to get up and create some normalcy. Jake and I agreed to shut off the emotions from the night before and try to have a normal morning.

The boys did so great up on stage, Levi as Joesph and Malachi as a sheep. I will post pictures with next week’s blog for you to see!

Prior to our chaos over the weekend we had a pretty decent week. Malachi’s sweet teacher brought some presets over to the boys, and the gesture more than the gifts themselves made their day.

Levi had picture day for his basketball team and the results were absolutely perfect.

We did lots of fun things this week and had lots of fun Christmas parties with friends, but my brain isn’t able to focus enough right now to share them with you. I will have to save those for next week’s post.

I don’t have much energy right now for a typical full fledged devotional thought, but I do want to share something with you.

In the middle of the week God very directly placed a verse on my heart as I read through Jeremiah. At the time I smiled reading it, not realizing my soul would soon be parched and require its words for sustenance.

Jeremiah 7:7-8

”But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

The heat continues to come for our family, and my prayer is that our leaves can remain green…not by any of our own ability but simply by allowing the Lord to sustain us and continue growth for His kingdom through our obedience.

Even in years, seasons, hours of drought we can bear fruit.

Even in our darkest moments God can cause unbelievable fruit to grow.

Please pray for our family, and especially for Levi. I will be following up this week with neurology and trying to find some solutions so prayers for wisdom is so necessary right now. And pray that we can detach this event from Christmas, with no more seizures. Holidays are already so, so hard for us. We need some respite this go around.

Much love, and sorry for the late post. My heart and mind tried to write one last night but continued to fall short from being able to focus.

Leah

Let’s play the high/low game to summarize our week!

High- Malachi finally got his new wheelchair! New equipment is a big deal for special needs families because it signifies VICTORY with the insurance brick wall. We started this process in early July and his shiny blue wheelchair made it to the house on Wednesday. Wheelchairs are designed to last 4-5 years per insurance. His green one lasted 5 years and it was nice to get something updated, fresh, and clean.

To be completely honest, new equipment brews strange emotional turmoil within me. Malachi was very excited about his new chair and we talked about all the fun ways we could dress the chair up and make it amazing. He was very opinionated that it was to be a Spiderman chair, and was mildly intrigued with maybe making it a Superman chair every now and then. But he also indicated it was most definitely never to be a Captain America chair…not quite sure what all that hate is about.

The mom cheerleader in me talks to him about all the amazing features on the chair, and how big he looks in it. I brag about how everyone won’t recognize him in this new, amazing chair because it is such a big boy chair. I also rally Levi up to help share the excitement, letting him push Malachi around super fast in the house like a superhero.

But stuffed deep down within me is so much grieving over the new chair. It signifies a lack of our miracle. It represents growth, but that growth represents more complicated medical issues as we near puberty. It serves as a reminder that the bigger Malachi gets the harder care will be for him.

We are so thankful for medical devices like wheelchairs, hospitals, doctors, and science. But I am learning a very real lesson that I can be thankful for something but still not really love it.

Malachi really wanted to show his new wheelchair to his friends at school, which leads us to our low for the week…

Low- Malachi tries to go to school every Thursday and Friday for 2-3 hours. This is where he gets his therapies and his social interaction. He hasn’t been able to attend very consistently this year due to all of the medical issues we have been dealing with.

He spent two hours on Thursday at school and on Friday morning someone that deals directly with Malachi in the classroom tested positive for Covid. As you know, Malachi has had it twice, the second time being much harder to recover from than the first. His last wave of Covid was in late August so we are just out of the three month projected immunity, so we aren’t sure that his immune system will kick in as it should.

As I type this on Sunday evening Malachi is symptom free but his seizures have been very out of control. We aren’t sure if this is a reaction to him trying to fight off Covid or something unrelated, but they are so strong they are causing him to cry in fear when they are over. Some have been lasting over 3 minutes and he is having over a dozen a day.

So far he has tested negative but it really is too early to rely on those home testing kits. So we have been quarantining him this weekend as we watch and wait.

When we are making decisions for Malachi we focus on giving him the best quality of life possible, even when that has potential to reduce his quantity of life. That sounds harsher than it should, so let me explain a bit.

I could wrap Malachi up in a bubble and keep him home and away from the public. That would likely extend his life a bit as I protect him from potential illness. But that wouldn’t be fair to Malachi. He is such a social boy and loves to interact with others. He loves outings, and he loves spending time with friends. Keeping him in a bubble would increase his quantity of life but very negatively impact his quality of life.

However, Jake and I are always struggling to find the healthy balance between both. We have been trying to turn a blind eye to potential sickness school can bring, but I think we are at a point where we need to hit the pause button for a bit and let his body recover. We will have to find ways to fulfill his social needs (and therapies) in a more controlled environment.

Let’s head towards Levi’s highs and lows from the week!

High- Levi has made some huge progress this week with his g-tube feedings. Ever since his g-tube popped a few weeks ago he has had very irrational fears with his mickey button (the circle part of his gtube that you see on his stomach). He keeps telling me he wants it out, which is very possible for Levi in the future but he isn’t able to take all of his calories by mouth at this point. We are getting there, but still have some work to do. He asks me to check his tummy tube at least 4 times an hour, even asking in his sleep. It has become a slight obsession.

Levi eats and drinks throughout the day as much as he can and we supplement with formula through his g-tube 3-4 times throughout the day and all throughout the night. For these sessions we hook up a bag of milk we keep in a backpack and a pump sends it in over 15 minutes.

There is another way to do g-tube feedings called gravity bolus. This is what we do with Malachi and it is so much faster than a feeding pump. The concept is easy to grasp- you attach an extension (straw) and large syringe to the gtube and simply pour the milk in and let gravity take it into the belly.

We have tried gravity bolus feeds with Levi before and he has screamed and cried saying that it hurts. I don’t think it hurts him but I think he just doesn’t know how to explain that it is uncomfortable.

But this week Levi asked specifically that I feed him like I feed Malachi. This is HUGE! So we treaded very lightly and did small bolus feeds for the first few tries. The biggest setback would be his belly not handling the large amount all at once and him vomiting, which he did a few times this week but he is slowly tolerating more each day.

We are officially committed to daytime gravity bolus feeds for Levi and using the pump at night only. The next step will be going to nighttime only, and then naturally we will trend toward eliminating that. If we can go several months without him needing to use the tube he could have it officially taken out forever!

I have such anxiety when I think about that, as the tube is still needed post op for Levi and when he is sick. But I would love a tube free life for him so I will try to put that anxiety in God’s hands.

And when I try to think of a Levi low for the week I can only think of two things…

Low #1- potty training. He is doing great with it, only having accidents when we try to leave the house for extended periods of time. But the amount of urine I am cleaning up around the toilet on a daily basis is baffling. Not really a ”low”, more of a holy moley moment wondering if this is what the next several of years hold. Jesus take the wheel.

Low #2- Levi is growing up. And his level of independence is increasing. This week as we walked into basketball practice I tried to snap a photo because he looked so cute in his tall ”basketball” socks he found in Malachi’s sock drawer and insisted on wearing. He was not amused and said ”Mommy, please go upstairs.” (the area where the parents have to watch from). Ouch.

But truthfully watching him grow has been so special and unique. The ease at which he passes through different developmental stages has been fascinating.

We got to do some more family trail riding in the backyard oh the joy it brings them (and us when we hear their giggles). It is such a big adventure for them, and being able to do that right outside the back door is a blessing. We always worry about regret on big purchases like these, but no regrets on this one!

This week I am in a good head space. I think the rest that this weekend brought with us as we quarantined has something to do with my clarity of mind. But I also have to attribute it to making a concerted effort this week to read AND ABSORB the Bible each day.

I have been so spiritually thirsty, but when I get the free moments to open the Word of God the stillness of the moment reminds me of my exhaustion and even though I am reading the words my mind cannot seem to absorb and process them. When I am done reading the words I feel so unsatisfied, which is not a healthy way to truly connect with God.

So this week I tried something new and I read a chapter a night, taking a screenshot each time I read a verse that pricked my heart. Then throughout the next day I pulled up those verses to read again and again, allowing myself to absorb them instead of going through the motion of just reading them.

And this is the one that really took root in my heart throughout the week:

Colossians 3:2 ”Set your mind on the things above, not on the things that are on earth.”

The word ”set” has been a reminder to me that our minds are naturally wired to focus on earthly things…our possessions, our problems, our worries. Focusing our minds on the things above has to be a concerted effort. But when we successfully ”set” our minds on the things above we seem to sail through those earthly moments that used to consume our minds.

This verse also reminded me that I need to start teaching this habit to my own children, helping them process what ”the things above” look like. Teaching my boys about God is something that is so important to me, knowing that some hard moments and conversations will be in our future.

While I know I can never fully prepare any of us for what is to come here on earth, I recognize the importance of building that framework of faith to point to when those hard times come. How can I expect Levi to be able to set his mind on the things above during the hard moments if I don’t start teaching him about those things now.

And those heaven talks with Malachi have become the favorite part of our day as we think about all the wonderful things it will hold for him. What a glorious thought it is thinking about all of the ”firsts” he will get to experience there.

Such a bittersweet thing to talk about and process.

Ugh the emotional roller coaster the special needs world puts you on. Sometimes I yell that I want off this ride, but in my heart I know that strapped into that coaster seat is exactly where I am meant to be.

Please join me in praying against more Covid in the Carroll house. And pray that Malachi’s seizures slow down and that we can identify the source of discomfort in his little body.

Much love,

Leah

We spent most of our week tucked into the house, trying to help Malachi get back to his baseline (somewhat successful) and trying to keep Levi from going stir crazy (less successful). We took lots of rides in the new “little truck”, as Levi calls it, and spent some time on the playground. I am so thankful for the many things we have at our home to make life here an adventure, especially on the harder days when we aren’t able to get out due to health reasons. In the past our family has gone into lock down mode for flu season to prevent the boys from getting terribly sick. The freedom to play here without fear of germs is an incredible blessing.

But alas the germs still manage to find us every now and then. Jake came down with a cold the day Malachi came home from the hospital last week and despite our attempts Levi ended up showing symptoms mid week. By Thursday he was running a high fever and was very sick.

When his airway swells it cramps the space, which is already small to begin with due to his paralyzed vocal cords. He gags very easily during these times and can’t keep food down. He hasn’t been able to keep any formula down for 3 full days so we are running Pedialyte through his gtube to make sure he stays hydrated. The doc confirmed no ear infections this go around and said we just needed to ride it out.

Malachi is not showing symptoms at this time but we are cautiously watching him. He just finished his antibiotic for pneumonia and adding a viral illness on the end of that will devastate his system. We have been continuing his breathing treatments and chest therapy to keep his lungs clear and he sounds so much better this weekend than last. He is also perking back up!

We have been in survival mode this week, running on very little sleep trying to meet the needs of the boys. I am really hoping this week leads to some restful nights for everyone.

Malachi threw his head back early last week while coughing and managed to knock my jaw pretty hard from the side. I heard a pop and by the next day I had a line bruise from where it must have slid out of joint. My teeth weren’t lining up quite right and it was difficult to chew and speak clearly but we ended up in the hospital so I just put it on the back burner. It slowly started to feel better but something still just felt off. I have been working with a local chiropractor trying to slide it back into alignment but oh boy, what an uncomfortable issue. It has been the ”cherry on top” of an already hard week.

But we have had some fun moments this week too! On Saturday we headed to a local Christmas tree farm to pick out a tree. We had promised the boys we would go the day after Thanksgiving but Malachi’s hospital stay adjusted that plan a bit. We then planned to go mid week but Levi got sick. Both of them were so excited with anticipation and even though Levi was sick we felt like it would be a fun socially distanced outing for him.

Malachi was practically giddy when we pulled in, incredibly excited about feeling all the trees and picking one out. Levi had stated he wanted a ”spicy” tree (spikey/sharp) but Malachi likes to touch them before making his decision. We thought if we took the wagon this year we could get him up close to each tree and we were right. But we didn’t count on the rugged terrain and Malachi took a wild ride when the wagon flipped over mid hunt. His face was priceless as he tried to process why he was sideways, but thankfully we had him strapped into his Special Tomato seat really well so he was not injured.

After wandering around for an hour we settled on a soft, fat tree and home we went!

We are not big holiday people but we are trying to find a few traditions to establish as the boys grow. The Christmas tree is definitely a keeper and both of the boys thoroughly enjoy having a decorated tree in the house.

Levi has been missing a lot of his basketball practices and games lately so we hunted down a small basketball for him so he and Malachi could ”practice” at the house. Trying to teach a toddler a sport is a very comical experience.

We have been trying to make sure Malachi is included in our basketball practices and Jake and I make it a competition of sorts to see who can help Malachi dribble the best. Here is a video for you:

2 Corinthians 4:6-9, 16-18

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;

Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day. For our momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 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.

This chunk of scripture is worth reading again, and again, and again.

I have been really trying to unravel so many emotions over the last week. I know I have used this scripture in blogs before but it summarizes my current inner dialogue so perfectly.

Afflicted in every way, but not crushed

Perplexed, but not despairing

Persecuted, but not abandoned

Struck down, but not destroyed

But tonight I want you to read that verse through the eyes of my Malachi. And let the power of those words really sink into your heart the way they have rooted into mine.

What a beautiful reminder that our bodies are simple earthen vessels. They were never created to impress. They were never created to catch eyes. They were never created to last.

Instead, they were created to hold a beautiful light inside….a fire that God will stoke and renew day by day if we are willing to be used as a simple vessel.

I think about my Malachi and how silly it is for me to focus on his outward differences when I know without a doubt that God has illuminated the world through his beautifully broken body. Did God not do the very same thing through the body of His broken Son?

I like to picture each new diagnosis, each new warrior mark from a surgery, each new medical issue as another crack in an earthen vessel that allows more of God’s light and joy in Malachi to burst through, radiating everyone witnessing his suffering.

The name Malachi means ”God’s Messenger”. We chose Malachi’s name the day we found out he was a boy, and I prayed this meaning over his life. And oh, how God so graciously answered that prayer. Through Malachi’s life I have come face to face with my God. The scriptures have come to life right before my eyes as we navigate life with Malachi. What a messenger he is for the Lord.

”While we look not at the things which are seen, but at the things which are not seen.” It takes a special eyes to be able to focus on the unseen. But I think that is a reminder my heart really needed this week.

In my moments of desperation, God grant me your eyes to see the unseen. And may He continue to renew our inner person day by day.

Much love,

Leah