Our crew made it safely to Cincinnati late Friday and have been making the rounds visiting family. And Levi got a taste of Skyline Chili for the first time ever.

Before I tackle Ohio news, let’s hit some highlights from a week prior to leaving Tennessee.

We had a visit from a new bear this week. This one was pretty massive and went after some Amazon returns that we left out on the front porch. As long as he doesn’t become a frequent flier to the porch we won’t get the shotgun out to scare him off. We live in the woods, so we have to remember to share the territory. Here is a video if you want to see the package thief:

 

And what is inside those boxes, you might ask? Levi’s physical therapist is still noting some low tone, especially around his ankles. We are trying to think of ways to make him work physically and get stronger so we ordered a new play set for Levi to encourage him to challenge himself.

We set it up in the living room to make it something he would gravitate towards and so far he loves it. He takes naps underneath it and sits on the platform just as content as can be. He squealed his first ride down the slide and while he is still cautious, he is getting bolder each day.

 

And Malachi went for a ride down the slide too!

 

Malachi had a busy week at his swim therapy; here is a quick video:

 

And he also rode his horse independently for a few laps! This is huge!!

Levi finally got brave enough this week to try out the swing in the playroom!

Alright, now on to Cincinnati updates. A little history for any new readers…

When Levi was born in November 2017 he had a rare condition called bilateral vocal cord paralysis. The typical treatment is to put a trach in the child and hope that one day the vocal cords wake up (a 50% chance). Life with a trach is complicated, a lifestyle we are used to but if we can avoid further machines and devices for our boys we have to give it a try.

We found three different hospitals around the country that were offering experimental procedures for newborns with Levi’s condition, the primary one being Cincinnati. Oddly enough (hello God) we just happen to be from the Cincinnati area so we have family within an hour from the hospital. We had a very long 5 month hospital stay and nearly two dozen surgeries/procedures but Levi went home trach free. We permanently changed his airway by putting in a piece of his own rib to prop the cords open.

Fast forward to this week. We did a routine scope a few weeks back on Levi in Chattanooga and it showed that his vocal cords are moving. Because of that we have been able to safely wean him off oxygen, and this week we will be following up with the original surgeons. He is also cleared to start to learn to eat. But because this was a new procedure (Levi was the second newborn to have the rib graft done) the surgeons need to figure out what impact the rib will now have on his normally functioning cords. They will also lavage his lungs to see if he is aspirating any foods or liquids into his lungs.

Tomorrow morning we will meet with pulmonology and Wednesday we will meet with Otolaryngology. Then on Thursday each of those specialists teams will take a good look in the operating room to see what is going on with his airway. We are anxious and excited to hear what they have to say after his procedure.

We considered staying in the Ronald House for this visit, but they are under construction and short on rooms. Having relatives an hour away, we didn’t feel like it was right to take up space in the house. It would have been very nice to have a “home base” for Jake and Malachi while we go to appointments, but we will make it work.

This weekend just happened to be my grandmother’s 84th birthday so we popped in on her party with family. Malachi and Levi had a blast spending time Saturday with their Ohio cousins and Grammy.

Malachi went for a dip in the pool but we kept Levi out for infection risk purposes. The last thing we need before an operating room visit is an infected g-tube site.

We are staying with my dad, stepmom, and my half sister and brother. Malachi has always loved them dearly, but seeing Levi so smitten with the kids is so sweet to watch. He is mimicking everything he sees them do.

Malachi’s wheelchair adjustments have been working so well for him! He is able to sit very upright in the seat and for the first time in a long time he was able to actually sit under the table at a restaurant and color.

Earlier this afternoon we stopped by my other grandma’s house and she got to hold Levi for the first time since the NICU. It was a special visit.

 

As I have explained many times before, the war within my mind during hospital stays and visits is a serious one. I procrastinated packing for the trip, determined to not acknowledge it until the last possible minute. The drive to Ohio was filled with waves of nausea as I kept seeing memories from Levi’s NICU stay when I closed my eyes. I talked with Jake at length about the darkness of those days and the feeling of being at war. He talked about the guilt he carries from not being able to be by my side for the majority of it. We were definitely under attack, and the wounds still seem fresh.

But as God always does, He is reminding me that there is incredible purpose in this chapter He is writing. He has impressed so many big things on my heart this week that are reminding me that even in the darkness, those places that make us cringe and want to flee, we are called to be a bright light.

Psalm 34 is a really pretty chapter. If you can take a few minutes to read it, I encourage you to do so. But one part really stuck out to me this week.

Verse 6 says “Those who look to Him are radiant…”

I have such an imagery of this verse, especially when I think about Moses meeting God on Mount Sinai. The Bible tells us that just being in the presence of God made his face literally glow to the point that the Israelites were terrified when they saw him.

I long for that glow. I long to rest in the presence of God long enough that his magnificent glory becomes a part of my countenance. I want that glow to be something that catches eyes and allows me to be a mouthpiece for God.

We should all desperately desire that radiance that being in the presence of God can provide.

God has reminded me in the last 48 hours that there is a reason beyond the known one that I am in Cincinnati this week. I am not here for me, I am not even here for Levi. There is someone else that we are meant to encounter and share Christ with over the next week.

It is very likely that I will never get the chance to figure out the reason we are here, and frankly God’s business is none of my business…I am just thrilled when I get to be privy to any of His behind the scenes work. My prayer is that I can keep my gaze on him, even through the hard moments and memories this week, long enough for His radiance to be seen on my face.

Please pray with me over Levi’s airway this week and for reports that exceed our expectations. May next week’s blog be full of praiseworthy things.

Much love,

Leah

 

 

 

 

Every now and then we have a week come along that seems to last for an eternity. This has been one of those weeks. Jake and I either forgot to eat dinner or didn’t have time to eat dinner 4 nights this week!

We tackled several appointments, including a trip to the dentist with Malachi. Malachi was born 4 months prematurely and had a stomach perforation at two weeks old in the NICU. Because of the perforation he had to be on TPN (essentially baby gatorade) for several months instead of proper nutrition that a typical baby should get through milk. As a result he did not have much enamel (if any) on most of his baby teeth and had to have 15 out of the 16 drilled down and capped or pulled. Ouch!

We have been anxiously awaiting his new teeth to come in, hoping that they would be normal. The dentist told us this week that the few he does have popping through seem to be in good shape!

The boys did their rounds of regular appointments and therapies. Levi is making such great progress with his feeding therapy and it is his favorite appointment of the week because he gets to try new things.

We even ordered him his very own kid’s meal this week which is something we have never been able to do in 6+ years of parenting. He didn’t eat a bite of it but maybe next time haha.

Side note- I almost deleted the grilled cheese picture because I noticed Levi’s left eye wandering in a tiny bit. We see the eye surgeon in a few weeks and I am sick to my stomach thinking he will likely want to operate on the eye muscles of the left eye too. Just something to pray with me about. I am getting weary from all these reminders of the damage his brain suffered.

With all this eating, we are also having to increase bath times significantly. Levi loves to wipe all of the sticky foods into his hair. Yay for some normalcy though!

Malachi has been growing so quickly that his wheelchair can’t keep up! We took him in to get re-fitted for his chair this week and he is sitting so much better, especially with his legs and hips.

Malachi has been getting bored lately so we are really trying to vary the things we do with him. He is so tuned into our world, and it is always on our minds to make sure he gets to do fun things apart from baby brother. We have been using his activity chair more so he can play with toys up high, away from Levi’s thieving fingers.

He even got to have a friend stay the night this week for his very first sleepover! Malachi felt like big stuff. Levi and Jake went to bed early and the three of us stayed up way too late playing and reading stories. We laid out blankets and camped out in the living room. I put Malachi in his bean bag seat to keep him posturally safe and his digestive system didn’t like it too much…he woke up around 4:00 and projectile vomited but we managed to clean up and change Malachi without waking up our friend!

Tonight he went outside on a treasure hunt with dad. We drew out a treasure map and had four stops he had to make along the way, each one requiring a task (ie find a stick and tap on the mailbox four times). He loved the adventure and squealed with joy when he finally found the end treasure. His imagination is so big! Here they are doing mission  #3 (getting three balls out of the grocery bag and tossing them onto the deck).

On Saturday our church hosted a “sensory day” so we took the boys for a little sensory play. Interesting fact: Levi struggles way more with sensory input than Malachi. They each have different things that trigger their discomfort…for Malachi it is multiple sources of sensory input, like loud music AND jumping up and down. Or hot weather AND loud music. The combo of things seems to trigger him easily.

But for Levi, he is very quirky about textures. He doesn’t like the way things feel. We are seeing this in the things that he touches and the things that he tastes. He also has a hard time with loud noises.

He wasn’t a fan of sensory day but doing things like that are the only way to help de-sensitize him.

Video time! This first one is a sweet video of Levi helping Malachi put his head back in the middle of the cusion. He sees Jake and I doing this all the time and recently we noticed him pitching in when we weren’t close.

And this second video is Levi being his goofy, silly self past his bedtime.

 

We will leave on Friday and make the trip to Cincinnati for Levi’s week of appointments. This is the first time we have met with these specialists since his vocal cords have started to move so we are very eager to hear their synopsis. He will have a procedure on Thursday so they can get a good look and intervene as needed. When he goes into the operating room for those we sign off on all potential procedures so they can fix what they need to while he is in there.

As we inch closer to being back in that hospital I am getting hit more and more with flashbacks.

I see that Ronald McDonald House bathroom sink where I washed Malachi’s bottles in a hospital baby tub…

I see that empty waiting room that Sunday morning that Levi required a time sensitive surgery…

I remember the number of steps from the door of the Ronald House to the nearest hospital entrance…

I remember the bench I was sitting on right after we arrived from Chattanooga when my cell phone rang to tell me Levi had coded and to come quickly…

Hospitals are such dangerous places for me. They have saved my sons lives, but they also carry with them so many painful memories that I have to battle. So while a part of me is excited to hear the report of the doctors there is a looming side that doesn’t want to enter that building ever again.

Changing gears for emotional reasons haha…

Jake and I have a crazy life. Like genuinely doesn’t make sense. But we find that God continues to ask us for more. He asks us to give more time to things, more energy, more obedience.

We have both had a stirring from the Holy Spirit this week from God, each of us separately feeling it. It wasn’t until this weekend when we brought it up that we compared notes and realized the feelings matched. God is preparing our family for something and we aren’t exactly sure what it could be. There is an element of the mystery that is exciting, but there is also an element of “buckle your seat belts folks”. For now we are just watching and waiting to see what God calls us to, trying hard to not run out ahead of Him.

James 1 has a big challenge for us:

“But prove yourselves doers of the word, and not merely hearers who delude themselves. For if anyone is a hearer of the word and not a doer, he is like a man who looks at his natural face in a mirror; for once he has looked at himself and gone away, he has immediately forgotten what kind of person he was. But one who looks intently at the perfect law, the law of liberty, and abides by it, not having become a forgetful hearer but an effectual doer, this man will be blessed in what he does.”

Oh, how often I have been a forgetful hearer in my lifetime. I want to be a doer. And not just a doer, but an effectual one like the Bible describes.

How many times do we allow ourselves to simply hear the Word but not challenge ourselves to act it out? Are we deluding ourselves by reading scriptures with zero intentions of trying obeying them? Or only obeying them when it is convenient? Do we choose to do what God is calling us to do, even when it brings discomfort, fear, or sacrifice into our lives?

Being a doer of the word takes intentional focus. It doesn’t come naturally. It all sounds so easy when presented with the concept in the Bible, but when the moment comes are you willing to act out the Word in faith?

This week I am praying for more opportunities to be a doer of the word. I am praying for uncomfortable moments that require action, not just sentiment. I have failed at this so many times in the past.

I am praying that God uses my uncomfortable week in Cincinnati to remind me that His plan is bigger than the things my eyes tend to focus on. I pray that God helps me morph into an effectual doer this week.

Please be in prayer this week over my family: for safety while traveling, for health, for good reports, for grace if the reports are bad. Selfishly, please pray for me as Jake heads back to school next week when we return from Cincinnati. Taking care of the boys on my own is exhausting work both mentally and physically. I need that supernatural strength that only God can provide!

Much love,

Leah

 

 

Summertime is truly magical for our family. For those of you who don’t know, Jake is a teacher at our local high school so for the months of June and July we are able to spend some quality time together as a family. Having Jake home to help with the boys makes life so much more manageable. I am already mourning in my heart over the idea that he goes back to school in just three weeks.

Levi is a little bit of curiosity mixed with a whole batch of adventure. Everything that he does is slightly dangerous. The kid craves adrenaline, and keeping up with him is exhausting. I decided this week to take a photo of each of the strange places I would find Levi (as I was walking over to rescue/chastise him of course).

Levi and Malachi are still such best friends. Levi doesn’t know that Malachi is “different” by the world’s standards and mimics everything he does. He will dig out one of Malachi’s bibs from the laundry basket and hold it up around his neck so he can look just like his big brother. He has even been mimicking Malachi’s sign language, learning from big bro just like he should.

He will go over to Malachi several times a day and rest his head next to Malachi’s, leaning in to kiss him on the mouth. He will climb into the chair with Malachi and hold his hand, just as still as can be, clearly overjoyed to see Malachi smile at his presence. The bond between them is continuing to grow strong.

Here is a silly video for you:

When Malachi gets tired he tends to let his head fall to the left. When this happens Jake or I will go over and straighten it back up for him. Levi has started doing the same thing, using both of his hands to hoist up his brothers head back into the center of the seat. What a great little brother he is!

Sometimes I wonder if their special bond will create some scenes for us in the future. Levi is aloof to the looks, stares, and whispers that we get now when we go out in public but as feisty as Levi already is I can only assume he will be protective of Malachi in the future when his awareness for these things grows stronger.

On Monday I took both the boys on a quick outing to grab a few things. The side of town I went to just had a Wal-mart that would suit my needs so I put Malachi in his wheelchair, strapped Levi in the Ergo baby carrier on me, and grabbed a cart. We try to avoid Wal-mart as it tends to always yield a story of some sort by the time we are finished but that day I decided to tackle it.

We made it all the way to the checkout and got in line behind a mom and her two children. The boy was six years old and the girl was nine. They were busy helping their mom put things on the conveyor belt and didn’t notice my crew right away, but I felt in my gut a conversation was about to take place. You learn how to read those situations, knowing whether the family will be open to a conversation or would rather not communicate about uncomfortable things.

The boy noticed Malachi first, stopping dead in his tracks to process what he was looking at. For many children wheelchairs are a foreign concept, especially child sized colorful ones that look like Malachi’s. His eyes moved from the chair to the braces on his legs, then finally up to Malachi. The wheels in his little head were processing and he couldn’t seem to fit Malachi into a known category.

Then the little girl turned around and caught a look at Malachi. I try to give kids time to process before I break the silence.She, too, studied every feature then started to walk over with wide eyes. She walked right past Malachi and leaned in really close to me and said with urgency: “There is something wrong with THAT BOY!” and pointed at my son. The look on her face was so intense, as if she was worried that maybe I didn’t know that the child I was pushing around was different.

Her comment genuinely made me smile, as her tone was one of true concern- not spite. I explained to her that Malachi is a little bit different than her, but in a lot of ways he is very much like her and her brother. I told them about all the things Malachi COULD do like play on a soccer team, swim in the pool without his mom helping, ride horses. Malachi beamed with pride and giggled at each of his many talents that I mentioned and seeing him react that way seemed to put them a bit more at ease.

Then the girl asked me if Malachi had a disease. That question sounds much more offensive than it really is when you hear it coming from a little child’s mouth. They want to understand why Malachi is the way that he is. So I explained how little Malachi was when he was born and how his brain is just a bit different than ours. I explained how he couldn’t see and she continued to hold her her fingers and ask him how many fingers she was holding up, clearly not believing me haha. Malachi liked the game and kept laughing at her until she finally was satisfied that I had told her the truth.

Parents in these moments are even more entertaining to me as you can literally see them cringe with each offensively worded question. When they hear my responses to those questions they usually lighten up a bit, recognizing that I am okay with their harsh wording.

I see those moments as a chance to create a new box in the mind of children. I want to answer as many questions as I can so the next time they see a Malachi they have a box in their mind that they can fit that child into. I want to give them a chance to get all the gawking, staring, and questioning out of their system so the next time they will see a boy or girl that CAN instead of a broken child.

I hope that I can teach that same grace to Levi as he grows older, but based on his personality now and his unconditional love for Malachi I can’t imagine him sitting quietly and hearing those things said about his brother. Oh the lessons Levi will get to learn at such a young age….lessons even adults have yet to master.

 

Every night Jake and I have four shifts to divvy out with one another: the Levi bedtime shift, the Malachi bedtime shift, the Malachi night shift, and the morning shift. This summer we have paired the Levi bedtime shift (9:30p) with the Malachi night shift (4:30-6:30am). The one who does the Malachi bedtime shift (11:30-12:00) gets to sleep in until a boy wakes up for the day (usually about 7:30). By doing it this way we are each getting at least 7 hours of sleep each night. When Jake is back at work I run on about 5 hours a night which is a challenge.

All that math to say, I have been taking the Malachi bedtime shift this week. We stay out in the living room and watch Little House on the Prairie and sneak spoonfuls of peanut butter ice cream. It is our favorite time of the day because it is just us and we can share secrets (like the peanut butter ice cream). He giggles and belly laughs and cuddles in so close to me. Each night we say prayers to Jesus and talk about the angels that God has sent to guard him each day. It is such a special time for both of us.

I can’t adequately explain Malachi’s soul to you all. He is so wise, so thoughtful, and so smart. We have been having lots of conversations about God lately. I never want Malachi to feel “broken” or anything less than perfect so I have always refrained from praying out loud with him for his healing, although Jake and I certainly pray for that daily. But the older Malachi gets the more I feel like I can have those conversations with him.

We talked about the girl at the grocery store and how silly she was to say the things that she said. I explained that even though he can’t walk like that little girl, that one day he will…I explained to him that he is not broken, he is just not made whole yet. I talked with him about how one day God will give him legs so he can run like the Flash. He smiled so big at that one. I explained that he might get those new legs on earth, but he also might have to wait until he gets to heaven!

 

Malachi and I have been praying out loud each night for his new legs and his brain to be made whole. We also pray for a miracle for baby Levi’s brain. Malachi may not speak, but I am convinced that he loves God in a way that brings Him so much glory.

Levi has been learning things by the minute, which is exciting to watch. He watches every move we make and tries to repeat it, like dad with the remote control…

Malachi with the hulk hands…

He has also been working on eating different foods and this week we have turned a corner! Y’all wouldn’t believe the things he has packed away. Pizza, turkey, PBJ sandwiches, bagels…

He still chokes frequently and sometimes his oral sensitivity is so bad that the food makes him vomit, but he is making so much progress. He is even drinking from a straw!

Today at church he got to play with his buddy, Joy.

I struggle with a lot of emotions each and every day. One of the main themes that keeps creeping back into my day is the emotion of fear.

Fear creeps in when I watch Levi crawl across the floor instead of walking like other kids his age.

Fear creeps in each time Malachi has a seizure, knowing that the chances of one taking his life are high.

Fear creeps in when I replay the words of doctors telling me they think Levi’s brain damage is worse than they first predicted. Or when therapists mention orthotics for him. Or when specialist blame things on his “low tone”, an indicator of cerebral palsy.

Fear creeps in when I hear statistics about medically complex children like Malachi and their life expectancies. Or the alarmingly high rate of abuse of non-verbal, non-mobile special needs children like him. This world can be an evil place.

I have moment where I fear death. Jake dying. Me dying. Levi dying. Malachi dying.

So. Much. Fear.

This week I have been processing that emotion and trying to figure out if fear is from God. I know that these exact moments of fear that I struggle with are most definitely NOT from God- they are attacks on my mind and heart as Satan is attempting to sow seeds of doubt in me.

But is all fear bad? I thought about all the times people encountered angels in the Bible and the angels commanded them to “Fear Not!” As I studied those scriptures I came to the conclusion that the fear in those moments wasn’t a bad fear, it was a healthy respectful fear/awe of something so spiritually powerful. And the fear of the Lord is most definitely Biblical and God honoring.

I remembered a scripture that I learned as a child about God not giving us a spirit of fear:     2 Timothy 1:7 “For God has not given us a spirit of fear, but one of power, love, and sound judgment.”

The more I studied that one I noted that other translations use words like “timidity” or “cowardice”. I wouldn’t categorize the fears I have right now as those adjectives so they didn’t answer my question.

So is fear from God? I still haven’t grappled with the question enough to answer it for you. I am still munching on and studying that one.

But nevertheless, fear exists in my life. And it likely will creep it’s way into your life. And it may grow bigger and bigger as life gets more complex, as it seems to have done in mine.

As I read the Bible this week I stumbled across a story I haven’t read in a long time from 2 Kings 6. The main character is Elisha, a prophet of God. The king of Aram is trying to attack the Israelite army and Elisha keeps thwarting their attacks by telling the king of Israel which places to avoid.

When the king of Aram finds out that Elisha’s prophecies are keeping his army from success, he send the army to capture him.

¹⁵ When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. “Oh no, my lord! What shall we do?” the servant asked.

¹⁶ “Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.”

¹⁷ And Elisha prayed, “Open his eyes, Lord, so that he may see.” Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.

As I read this story I found myself relating more with the servant rather than the prophet. His fear was understandable as he stared at the reality of the army in front of him, and he cried out “Oh no, my lord! What shall we do?”

But this story has reminded me to believe that for every big battle we see looming in front of us, God has already prepared an angel army to help us fight it. As I read this story I reflected back to how many times I have allowed myself to focus and fret on the seen instead of finding comfort in the unseen.

My new prayer this week will come from the words of Elisha as he prayed “Open his eyes, Lord, so that he may see.”

I pray that in my moments of fearfulness that I will remember to ask God to open my eyes so that I may see the angel armies God has already send to surround my boys and their big battles. I pray that God would continue to replace my fear with faith.

And I pray that my faith continues to remain bigger than my fears.

Much love,

Leah

 

 

 

We made it back from South Carolina on Wednesday evening and life went back to its normal chaos. Overall the boys did really well at camp! It helped that we had lots of chaperones and teens eager and willing to help!

And don’t be too freaked out…Jake and his friend Tanner look eerily alike when they wear their matching soccer hats haha.

 

 

Like I mentioned last week, Jake stayed with the teens at camp and the boys and I stayed in a rental house about 15 miles from the camp. The house couldn’t have been more suited to our accessibility needs and made life so much easier than a hotel would have been.

Having my two nurse friends come along was such an incredible gift. We would spend all day at the camp and leave around dinnertime. Every night I would leave Levi with them at the house and drive back to camp with Malachi to hang out with the church kids until midnight or even 2am.

Malachi is a social butterfly so he fluttered from person to person, just happy to be around so many fun people.

Here is a sweet Malachi giggle video for you:

And Levi learned some tricks and games from the big kids.

Here is a Levi giggle video:

Levi took lots of naps throughout the week, and when you are on the go you just sleep wherever you can.

We spent in time to spend the fourth of July at the house, enjoying being home in our own comfortable environment. I floated the river with a friend, something I don’t think I have done since before Levi’s pregnancy over 2.5 years ago….which means I haven’t gotten some serious sun in a long time either. I sheepishly decided to not apply sunscreen and definitely regretted it on the 2.5 hour float. And when you are floating in a tube only one side of your body gets the rays, so I am looking quite ridiculous these days. Oops!

This weekend we had some friends from Ohio come to visit with their two young daughters. We laughed all weekend at how enamored Levi was with the girls, following them around and trying to mimic the things that they were doing.

Spending time around other kids can always turn into a comparison game for me, as I see the things that a nine month old can do but Levi has yet to achieve. Sometimes my mind likes to pretend that he is quickly catching up on milestones, but the reality is that he moves at his own Levi pace. I have to constantly remind myself to be content with his pace as I tend to start panicking a bit.

We took our friends to the river down the road so their daughters could play in the water. River water is a no-go for children with g-tubes because of the bacteria so Jake took turns taking the boys out into the water to put their toes in.

Levi went first and Malachi and I sat in the shade together. When Levi and daddy walked away Malachi started sobbing. He didn’t understand that they were taking turns and thought that Levi was getting to swim and he wasn’t. I explained to him that no one was swimming in the river, and that the water was too shallow for ANYONE to swim. I also explained that it would be his turn next, but he was so sad with big tears rolling down his face.

When it was Malachi’s turn he was beaming with joy and loved the cold water on his toes.

It is always so encouraging to see him react with typical emotions to things. Early on in his life he would respond to pain with laughter and seeing him not quite “get” what was going on around him was hard for us to see. But lately he has been responding so appropriately to situations and it has been a wonderful reminder of how far he has come.

It is so wonderful to see the sweet six year old boy in that beautifully broken brain.

When youth camp week rolls around each year I hear a lot of comments about how crazy Jake and I are to tackle so many roles, especially with our medical kids. People make comments about our busy schedule and how tired we always are (which is very true). And sometimes I find myself contemplating their suggestions to scale things back a bit and to focus more on ourselves and our little family.

But then I am reminded that I am not on earth for me. I am here to bring glory to God.

Matthew 5:14-16 says “You are the light of the world. A city that is set on a hill cannot be hidden. Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house. Let your light so shine before men, that they may see your good works and glorify your Father in heaven.”

We aren’t called by God to focus on “us”. We aren’t called to get more “me time”. We are called to shine our light to THE WORLD! That is what brings God glory.

When we allow our focus to shift towards ourselves we allow our priorities to change. Yes, being youth directors at our church can be so tough, especially during camp week each year. I could stay at home and send Jake alone and be completely justified in doing so. But instead I choose to go and pour as much of my light into these kids, knowing that it brings glory to God. And in turn, watching their faith grow draws me closer to God.

I have had this on my heart for awhile and yesterday a friend posted a quote from Tony Evans that reiterated the message:

“You exist for God. That is why you were created. You were not made just to get a good job, to live happily ever after, to get married, and to have kids. Those you call blessings and gifts. You were created to bring God glory and to accomplish His purposes on earth. That’s why you will find no rest in life until you find rest in Him.”

Sacrifice is something we naturally tend to turn from. It is painful, uncomfortable, and unnatural. But when you remember that your sacrifices allow God to be the focus then it doesn’t hurt at all. Instead it refreshes your soul in an indescribable way.

Every day I have to ask myself if my plans will bring glory to God. Many of them don’t naturally do that so I have to make a conscious effort to find a way to bring Him glory. Sometimes that means offering an undeserved kind word to someone. Sometimes that means opening the door and letting someone get in the line in front of me. Sometimes it means getting up with Malachi when Jake needs the extra sleep. Sometimes it means picking up trash on the side of the road. Every time it involves me putting someone else above myself.

God sees our hearts and he sees our intentions. And even when we aren’t shining a light for all to see, He sees our hearts. And the motives of our hearts are what truly bring Him glory.

I feel like I am rambling so I am going to wrap it up for tonight! Please be in prayer for the boys, that we stay healthy the rest of the month leading up to our week in Cincinnati. As we get closer and closer to that trip I get more excited to hear the report from the doctors about Levi’s airway. He is sleeping without oxygen right now and staying at very safe levels which is a praise. I would love to hear them say that he has been made whole!

God bless,

Leah

 

 

On Saturday we made the drive with our youth group to a camp in South Carolina! Jake is staying at camp with the teens and I am at a rental house with the boys. I have two friends here to help which is a game changer!

 

Every year I get anxious leading up to camp, as the devil always seems to find a way to attack our family to keep us from going. I was feeling like we were in the clear until Friday night when Malachi started having some major seizures. He had 5 big ones right in a row, each lasting about a minute. They scared him (and us) so he was uncontrollably sobbing after and during each one…and that is absolutely heartbreaking to witness.

We started through the checklist of what it could be- could it be just a simple ear infection or something complicated like a shunt malfunction that requires emergency brain surgery? Sometimes we can get Malachi to pinpoint what is hurting him but this time the pain was too intense to even stay calm enough for him to communicate.

I will spare you the details of all of the medical interventions we tried but one of them must have worked because he finally calmed down enough to fall asleep. Those seizures take so much out of his little body.

I don’t know if any of you have a unique life like we do, but when you live it every day it just seems so ordinary. The medical tasks have just ingrained themselves into our routines to the point that we don’t think they are out of the norm. But as I packed our bags for the trip, making sure to pack all of the medical supplies we would need I couldn’t help but realize how complicated our days can be.

When we travel far from home we have to think of every possible scenario and plan for the worst. Updated medical summaries, oxygen tanks and cannulas, pulse oximeter machine and sensors, extra g-tubes and extensions, special seating for Malachi, not to mention all of the medications. I spent the two weeks leading up to our trip calling and coordinating deliveries for formulas, diapers, and feeding bags as well as all of their medication refills.

Medications for most people involve a standard Walgreens pharmacy, but for the boys we have to use four different pharmacies and have some of their specialty medications shipped. Both of the boys are on special formulas that are not sold in stores. There has to be a whole lot of planning before we can commit to out of town adventures.

Adding to the chaos is sweet baby Levi and his antibiotics for his double ear infection. The antibiotic we went with this round had to be stronger than the last and has upset his stomach severely. I will avoid painting you a picture, but we had to pack a whole lot of extra outfits (in dark colors haha) for Levi and momma.

 

Leading up to camp we tackled our regular appointments…

Malachi went to swim therapy.

Levi rocked his physical therapy session, standing independently for a few seconds!

Both boys went to feeding therapy. Levi is improving by leaps and bounds! In this photo he is signing for “more noodles”.

And Malachi went to hippotherapy and got to ride one of his favorite horses, Chica. The summer heat has officially arrived here in southeast Tennessee and Malachi shuts down easily. He was wiped out after just 15 minutes.

Jake has been running in the evenings and taking Levi in the jogging stroller. We try to keep things like this a secret from Malachi because we don’t want him to feel left out, but Jake accidentally talked about it in front of him one day this week. You could see a bit of jealousy in his sweet eyes and we never want Malachi to feel left out. Jake rigged up the jogging stroller so Malachi could give it a try, and he giggled the whole time. Unfortunately the stroller isn’t supportive enough for him so we won’t be able to make it a regular thing but it sure did make his day to get to run with daddy.

As you might remember, back in 2017 I wrote a Facebook post about a sweet encounter we had with a mom and her children at a Chick-Fil-A. God caused the post to catch fire and in the lat 2 weeks it has seemed to spark again. When this happens lots of visitors find the blog…as an example of the insanity, just today over 18,000 people have visited the blog. WHAT?!?!

Let me rewind a bit and remind you how this blog began. When Malachi was born at 24 weeks we found ourselves repeating the same medical updates over and over again to family. Repeating the bad news so many times was very hard on my heart so we began writing daily updates. God drew Jake and I very near to Him those dark days and would lay verses on my heart to tape to Malachi’s incubator each night in the NICU. We started sharing those verses at the end of each daily update.

When Malachi came home after 4 months in the NICU we decided to continue to updates, but change it from daily to weekly. And here we are 6 years later! To be completely honest, the blogs are more for me than anyone else. I need a place to dump my emotions, fears, and thoughts each week and then leave them behind to start fresh. God continued to lay verses on my heart each time I wrote so I just kept adding the devotional thoughts at the end.

Fast forward to today. The updates are something I still need to do….for me! I have thought about stopping so many times and each time this happens God clearly tells me it isn’t time to stop yet. There are weeks like this one where writing the blog is difficult and something that weighs on my mind during a busy day. They typically take at least 2 hours to write, and I sometimes can’t start until after the kids go to bed at 11. But if I can offer anything to God, obedience is most definitely an easy thing to focus on.

As God has brought an audience to our journey I have been absolutely awestruck. Literally speechless. While I love to write, my skills alone are not able to draw a crowd of thousands. God is up to something y’all. And I am as in the dark as each of you.

I get a lot of messages talking about my faith, so tonight I want to address that thought.

My faith is sometimes weak.

I am not doing a fake humility thing by saying that, just being 100% raw and transparent.

But this week as I read all these messages talking about my “extraordinary faith” I started to feel a bit uncomfortable. I see so many holes in my faith, and I started to worry that maybe I haven’t correctly portrayed the struggles I face with keeping that faith.

And to be honest, I feel inadequate many times. I think back to the conversation God had with Moses in the wilderness after he told him to go and speak to Pharoh in Exodus 4:

¹⁰ Moses said to the Lord, “Pardon your servant, Lord. I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.”

¹¹ The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind?Is it not I, the Lord? ¹² Now go; I will help you speak and will teach you what to say.”

When I read those words I cringe when I apply them to myself. I want each of you to apply them to your lives as well. We make so many excuses as to why we can’t serve God. We find so many reasons we are “unworthy” to share our faith with the world. But like God plainly stated to Moses, He created each of us and knows what we are capable of doing for Him.

We are just called to obey.

I don’t know what things you may be dodging right now. Maybe there is something big God has put on your heart to do, but you have allowed the excuses of feeling inadequate to keep you from committing.

Just remember that the God who created you knows your capabilities much more than you do. So if He calls you to it, assume that He has given you the ability to accomplish it with His help.

He is just looking for people ready and willing to be the hands, feet, and mouthpiece for Christ. Are you truly willing to step out in faith?

Much love,

Leah