Wounding Work

This week we dealt with the typical post-sickness battles with Malachi. While the head cold we passed around was very mild, the extra mucus that it created for Malachi set him into some intense seizures each day. He has something called Lennox Gaustat Syndrome (uncontrolled epilepsy) and is having 2-4 seizures on a good day, which is down from his 8-10 he was having daily before his CBD oil. He had a pretty massive 4 minute one on Thursday and I started considering administering his rescue meds, something I haven’t had to think about doing for quite some time. We carry them with us wherever we go and when we administer those we have to call 911 as it slows his respiratory rate down a little too much. Thankfully he popped out of it without any intervention. By Friday morning I felt like he was stable enough to try school for the day.

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A praise report though: Levi was the only one who didn’t catch the cold! That is such a blessing with his narrow airway and something that only the Lord could have orchestrated.

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We canceled all but two of our appointments this week, which was actually pretty refreshing. We get into such a monotonous routine sometimes with therapies and having a surprise break of getting to sit at the house and rest was much needed. To give you some perspective, we still have 29 appointments/therapies left for the month of September. Just process that number…our medical schedule alone gets so overwhelming.

Despite the down time, we still had a few adventures this week! On Friday evening I had taken a solo trip to the grocery store and pulled onto our road at 9pm. As I came up the hill I heard the camera alarm go off on the front porch and assumed it was Jake coming outside to help carry in the groceries. But when I glanced at the camera I saw another very long black bear meandering by the front door.

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When we built our house we designed the front porch to be an extension of the driveway so I could pull under the awning when it is raining to get Malachi out without getting wet. So I cautiously drove up to the front door and sprinted inside, asking Jake nicely to  carry in the bags of food. I just feel like we are constantly being watched by the bears in the woods. It is such a spooky feeling!

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Soccer is also in full swing- this week we have a game on Monday, Tuesday, Thursday, Friday and Saturday. That is insane! Malachi and Levi still love going to the games so we haul out lots of seating options for the kids, a small tent canopy, and enough snacks to keep Levi happy. By the end of the games Levi is usually filthy beyond recognition and exhausted which is a hidden bonus as he sleeps like a rock!

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On Saturday Jake, Malachi, and I went to a friend’s wedding. We were worried that Levi wouldn’t be quiet so when our buddy Tanner offered to sit at the house with him we gladly agreed. We talked the adventure up to Malachi explaining that only big boys got to go to this wedding…no babies were allowed! He felt like big stuff and was extremely well behaved. The ceremony was outside and he got overheated a bit. Interesting fact about Malachi: he doesn’t sweat so his temperature can get a little dangerous. But much to Jake and I’s surprise he was dripping with sweat after the ceremony, so much so that it saturated his hair! I know it sounds crazy, but I get excited when things like this happen as I wonder if his brain is rerouting connections like we always pray for.

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Levi has still been singing while he does just about anything. In fact, right now it is 11:00pm and he is laying in the crib next to me trying to fall asleep…just humming away. His speech is improving and he is adamant when he asks for something, like “Bubble” for Bubble Guppies. He has also been very eager to help with Malachi, like trying to put on his shoes and socks for him. He really has a sweet and tender heart. Here is another sweet video of him singing:

The mix of sleep deprivation and not feeling 100% took its toll on me and I found myself doing the most ding-batty things like putting the TV remote in the car. In addition to all of that, the fire extinguisher in the kitchen at the church had leaked all over the floor and as we investigated what the fluid was I managed to get some of it in me eye. It burned and kept me awake at night even though my body desperately desired the sleep.

This morning in Sunday School our teacher brought up a man named John Bunyan. I remembered the name from a book I read in High School called Pilgrim’s Progress but I didn’t know much of anything about him other than that.

John Bunyan was a preacher in the 1600s who was imprisoned for preaching the word of God, and during this time he wrote several books including Pilgrim’s Progress. He was given several opportunities to be freed if he would vow to stop preaching, but that was a vow his convictions never allowed him to make.

He had a wife and four children who clearly suffered during his time in prison from the lack of financial and emotional support from Bunyan.  One of his children was born blind, and after reading a bit about her you can tell that they had a very special bond.

Bunyan said: “O I saw in this condition I was a man who was pulling down his house upon the head of his Wife and Children; yet thought I, I must do it, I must do it.”

When I look at John’s life I see something that a lot of us choose to look past when it comes to our walk with God.

For true separation from the world and a concrete unity with God, there will be pain involved. Obedience to God’s calling on our lives requires self denial and the desire to pick up your cross and carry it joyfully, seeing the beauty in the sometimes painful journey.

In The Excellency of a Broken Heart he says, “Conversion is not the smooth, easy-going process some men seem to think . . . . It is wounding work, of course, this breaking of the hearts, but without wounding there is no saving.”

There is a wave happening in Christianity today where people choose to focus on the loving attributes of God and not the hard stuff that He asks of us…the obedience and the sacrifice. Our human nature likes to focus only on the things that make us happy and assume that God desperately wants us to be happy- we don’t REALLY want Him to exchange our heart for one like His. We want to pick and choose the things that we like about Christianity and go all in for just the easy, natural parts like loving our neighbors.

But as Bunyan states, conversion is wounding work.

Is your walk with God challenging? Is the Holy Spirit actively working in you, wounding you by cutting off the branches in us that don’t bear fruit?

If there isn’t a little bit of discomfort and pain within your walk with God, are you truly seeking God and asking Him to refine you? To heat you up in blazing fires, to send challenges into your life that bring your impurities to the surface where He can scrape off that dross and remove it from our lives?

I know this is some really intense stuff, but it is something that has been on my heart so much lately. What has it cost you to follow Jesus?

2 Corinthians 5:17 says “Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.”

Have you said goodbye to your old self? Or is one hand grasping desperately to your old self while God firmly holds your other hand that is reaching for Him, choosing to be caught between two worlds that aren’t meant to coexist.

Please join us in prayer this week that God would send us our miracles. Pray also that He continues to give Jake and I a strength that defies all reasoning, and patience specifically for me when my mind is weary and my boys are not.

Much love,

Leah

 

 

 

 

 

 

 

 

 

 

Memory Lane

This week I made a drive down to Chattanooga with the boys for a soccer game. As I drove through a town close to the hospital I had such an urge to shut my eyes, which obviously wasn’t doable as I was driving. It seemed like every few seconds was another spark for a flashback.

The H&R Block I used in 2013 when Malachi was still in the NICU for tax season. I remember being so bitter that I had to leave his bedside to do such a menial task. I was on the verge of tears during the appointment.

The Texas Roadhouse parking lot where I talked with my OBGYN about the night Levi was born, trying to figure out what we were missing- not realizing yet that his vocal cords were paralyzed. I have a vivid memory of staring down at my hospital bracelet that day…the NICU requires you to keep it on until discharge so it almost becomes a badge of shame as it reminds you that your baby isn’t like everyone else’s.

The Target that I went into the day I was discharged from the hospital after having Malachi- clueless about what to buy. I remember the cashier noticing the breastfeeding supplies I was buying and naturally asked if I had just had a baby. Her question was one I wasn’t ready to answer so I just cried and left the store. The drive down that same bumpy road caused me so much pain that day as I hadn’t ridden in a car since my emergency c-section.

The Wal-Mart Jake and I ran to when Malachi ended up in the ICU with the flu the year after he was born…pre-hospital bag days. We were still believing that our medical journey would end with a completely healthy child who overcame his prematurity. He fought hard and we almost lost him that week. It was a reality check week for our family.

Literally every few seconds I passed another memory. So I focused on the road right in front of me, hoping that the mental attack would stop. But as I focused on the road a low flying airplane passed right in front of me. That took me back to the night I was in the air ambulance with Levi, staring down at the lights of Chattanooga, filled with so much hope as we made our way to Cincinnati.

I thought about the Angel Flight that Jake was able to take to get to Cincinnati to bring Malachi, Levi, and I home for the first time in 5 months. I started smiling thinking about the wager I had with Jake that he would throw up on that flight. Thankfully for all involved, he did not.

As I made that drive on Thursday I ran the gamut of emotions, getting teary eyed several times at some of the harsher memories. But as I looked in the rearview mirror at sweet Malachi and wild-man Levi I couldn’t help but burst with gratitude that I get to share life with them.

Our story has been filled with horrible moments….some people are blessed to maybe have just one or two of those life altering moments in their lifetime. But for our family there are too many of them to count.

But as hard as our story has been, it could have ended up so differently.

I could have flashbacks to picking out headstones, or choosing outfits to bury my children in. I could have flashbacks to funeral days or those moments that doctors came in to deliver the news that my son had gone to be with Jesus.

But that isn’t our story. And my heart is so thankful, even when we deal with the messy.

Today I am blessed with two healthy, happy boys who love each other fiercely. Tomorrow may bring more hard memories, or more unpleasant things but for today we are simply living our uniquely blessed life.

We are thankful for every second that God gives us together on this side of heaven. It has been worth every memory, every fight, every hospital stay, every surgery, every tear.

Check out this photo from Levi just one year ago today and you will visibly see how far the Lord has brought our family!

Once we literally drove down memory lane and got to the soccer game I was able to take a deep breath. The boys love being on the sidelines with us. We have a new chair for Malachi to sit in so he doesn’t have to be in his hot wheelchair. And Levi likes to roam and play the role of assistant coach.

We knocked out six appointments this week but there aren’t too many updates from those.

Malachi loved his water therapy as always.

 

And Levi watched intently, working on his model poses poolside haha.

 

Levi has been working hard on his walking this week and is independently staggering long distances. This morning he was chasing after a girl so I grabbed the video camera to catch it on film for you.

Levi has also been so much more vocal lately! I took a video this week so you could hear his sentences. In this one he says “I said doo doo doo dooo…” and sings for you. You can hear his stridor as he struggles to catch his breath. We will be watching this closely to make sure he isn’t getting dangerous with his oxygen.

And of course, he has been thoroughly amused with the fart machine…here is a video:

A friend of ours was selling a giant bean bag couch so we snagged it hoping to give the boys a nice seat they could safely share. It is absolutely massive!

 

Levi is his typical ornery self. I worked four days at the office this week and he was not a fan of his play pen, even though it is essentially the same size as the office! He just doesn’t want to be told where to play so he screams at me to get him out, which I can’t always do. His new tactic is sticking his fingers into the back of his throat to make himself throw up, knowing that will get my attention. Oh boy! He also did this lovely new move in his car seat on the way back from Chattanooga.

We are finding all the places that aren’t baby proofed around our house. Levi is getting faster and stronger so we have to be on our toes 24/7. He is tall enough now to reach things on the table.

Here is a video of his sheepish door opening abilities:

Malachi was able to attend school three days this week. Sickness is starting to brew in the school system so it will be pretty spotty on which days he will be able to attend.

He has been enjoying life so much these days. He loves to just sit and listen to the world around him.

Speaking of sickness, with the weather changing there is something brewing in me. It could be allergies, it could be a head cold, but either way it has caused a full fledged sinus infection. Any sickness, even the smallest ones, puts us on edge as we watch the boys for signs and symptoms. So far they are both sickness free.

We had the youth group over to the house tonight, our new Sunday night tradition. I try to treat them the way I would have wanted to be treated at their age so we prepare a spread of foods for them and invite them to join us for dinner. You all know the chaos of our schedule…we rarely have time for dinner with just the four of us… but you also know my motto: If God calls you to do something He will never deplete you of the energy needed to accomplish it. If food will motivate them to come and study God’s word with us, then we don’t think twice! We have been exchanging Sunday afternoon naps for cooking, and I haven’t felt a negative difference so I think my motto is proving to be true.

I am doing a study with the girls about beauty and we are talking about the different aspects of the beauty the comes with knowing God. Tonight we studied a verse in Psalm 34.

“Taste and see that the Lord is good.”

Have you ever really processed this verse? How are we supposed to taste that God is good?

But what I think this verse is really aiming to help us realize the difference between knowing about God and truly knowing God.

I can tell you all day about what a cotton candy grape tastes like (yes, that is a real thing). I can describe the texture to you, paint a picture of what it looks like, vividly tell you what it feels like when one explodes between your teeth. I can tell you about the sweet flavor of the juices inside and compare it to other things you might have tasted in the past.

But until you taste one of those grapes you will never really know what it tastes like.

It is easy in Christianity to hear about other people’s God moments and feel that flutter in your heart. It is inspiring to hear testimonies of healings and transformations. But until you experience God, taste God, for yourself you can’t realize how amazing He truly is.

We talk to the youth over and over again about the difference between knowing ABOUT God and knowing God. Once you taste the goodness of God your life will be forever changed.

Is your faith in God based on others detailed descriptions? Is it based on a sermon you heard from a powerful preacher? Is your faith based on commentaries you read? Is it based on Bible stories you read about in God’s word? If so, I want to encourage you to truly TASTE the Lord and experience Him for yourself! Speak to Him and allow Him to speak back. Allow His Spirit to guide your heart.

When you have a relationship with God you will continue to see and taste His goodness. And let me tell you, it is way better than any description that someone might try to give you.

I am headed to bed, but want to thank you all again for checking in on our family each week. I got so many encouraging responses from last week’s post about the eye doctor and I am so grateful to have so many people looking for ways to lift us up. Please continue to pray with our family for more miracles.

 

Much love,

Leah

 

Shadow of Death

We are wrapping up another week of laughter and tears, calm and chaos. You never quite know what emotions each hour will bring!

We had our first soccer home game this week so we hauled the Wild Raptor for Malachi and the pickup truck for Levi!

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The boys both genuinely love going out to the games each week. Levi has started clapping when the crowd claps and Malachi loves the variety of emotions the games bring out in the stands.

Levi had his follow up eye appointment with the surgeon on Monday, and once again I left the appointment and bawled in the parking lot. I have dealt with neurosurgeons, orthopedic surgeons, heart surgeons…lots of big surgeries and diagnoses. But for some reason these eye appointments seem to be my kryptonite. I always leave feeling like such a bad mother.

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Levi obviously didn’t cooperate with the eye exam after a very long two hour wait. We have surgically fixed the alignment of his eyes, a byproduct of his brain damage. But he has a secondary issue as well, a lazy eye (thanks genetics), that can’t be surgically corrected. The best treatment is patching the good eye and hoping the weak one will grow stronger. If it doesn’t improve the brain often shuts off vision to the bad eye causing blindness in that eye.

Now that Levi is stronger and much more opinionated he refuses to keep a patch on his face, not to mention any oxygen tubing. Everything gets ripped off in a hurry. When I explained this to the doctor he told me that Levi was likely one of those kids that would just have to be blind in one eye since we aren’t able to patch. He said other parents “just sit with the kid and keep them entertained for the 1-2 hours of patching each day”, which inadvertently made me feel like a bad parent for not being able to successfully do so.

Levi was all over the office during the appointment, trying to open every cabinet drawer and empty it’s contents all over the floor. I felt such judgment from the surgeon and nurses as they watched me chase after him. But they don’t understand that this sweet boy spent the first five months of his life trapped in a hospital bed. Seeing him get into everything he can reach makes my heart leap with joy.

As I left the office I just felt so discouraged. I am so incredibly tired of continually hearing that my boys are broken. I am so tired of discussing bad future outcomes, and things that will “likely” happen. I sat in the car and allowed myself a good 20 minute cry as I mourned over the things I can’t take from them.

We are going to try eye dilating drops in Levi’s good eye with the hopes it will make his weak eye stronger as it tries to focus on things. This will make him sensitive to sunlight and will have to be done every day for likely several years. It really isn’t a good solution either, but we are out of options.

By the time he reaches an age where I can reason with him and explain the patch he will already be too old for it to make a difference.

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Switching topics, we found this cool new stroller seat that connects to the back of a wheelchair! I haven’t tried connecting it yet but will see how successful it is later this week.

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On Wednesday nights in our youth group we usually end up with 25-35 teens, and Sunday evenings are much lower with maybe 10 kids. We decided we would start switching things up (I know, we are crazy) and have the kids come over to our house for Sunday night Bible study. We spent all weekend prepping the house for the youth, and today I broke out the kitchen gear to prep snacks for them. I felt so…normal. Oddly normal. I used to love to cook, and being able to do so today felt good.

Both of the boys were giddy with excitement as the teens slowly started to fill the house. We ended up with 25 at the house, Malachi clinging on to every word and laugh. We are planning to make this the new Sunday night routine so please pray with us that God protects our home from any potential sickness!

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When we built this house we specifically designed the basement for having Bible studies and youth activities in it. We prayed over each room and buried a verse under the foundation that had been chosen for each specific space, and the one we chose for that main area was done with the teens in mind. Since Levi entered the picture and required being on the main floor due to the oxygen concentrator, we decided it was unrealistic to host anything. But having the chance to have the kids over routinely is such a fun new adventure. And it forces me to clean each week haha.

Levi has recently started loving an audience. On Saturday night we met with some church friends and he was showing off his new walking attempts. Here is a silly video:

And another silly video of Levi singing. He has started humming while he plays by himself, and Jake does the exact same thing. It is so sweet to hear his little voice.

Malachi made it to school three days this week but had to be picked up early one of them due to some big seizures while he was there. I usually leave Levi strapped into his car seat while I walk Malachi up to the drop off doors, but on Tuesday he just wasn’t having it. I loaded up Malachi into his chair and carried Levi for the drop off. He was mesmerized, but started to cry when he watched them wheel Malachi away. I tried to explain the process to him, but he wasn’t satisfied until we picked Malachi back up that afternoon.

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Levi knows no danger. And this week he mastered opening doors…including the front one. And wouldn’t you know it but ten minutes after he successfully opened the front door for the first time the neighbor texted and said she had just walked up on a momma bear and two cubs out in front of our house. Ahhhh.

We had another young bear stop by a few nights ago and check out the front door. He was much smaller than the others we have been getting!

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Danger boy and all these bears are making us a nervous wreck so we have been in baby proofing mode. Well, I guess it is the next level up from there as we are having to prep the house for a Macgyver.

I turned around yesterday and he had crawled up to the table and grabbed two forks banging them on the table like a savage.

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Malachi rocked his therapies this week! His work ethic is so special- he wants to give his 100% to everything that he does.

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Wednesday’s horseback therapy had to be cut short as the heat just withered all of his energy. We got the horrible news this weekend that the horse he rides passed away very suddenly. I haven’t told him yet, but will be trying to find a way to explain it all to him. He has been riding that horse for many years.

Both of the boys absolutely love feeding therapy each week.

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Levi is starting to get more picky with his food and is still choking often on solids. But we will keep practicing!

This week I have been bit big time by the worry bug.

My mind keeps wandering to thoughts that I dare not go toward often…thoughts of Malachi’s life and how it might end. All of these fears prompted by the dozens of children like Malachi in my support groups who have been called into heaven in the last few weeks. This is the time of year that sickness begins to wreak havoc on poor immune systems like Malachi’s.

Will he be taken quietly in his sleep?

Will he pass away during a unstoppable seizure?

Will he go in for a surgery and never make it off the operating room table alive?

Will he outlive Jake and I, which brings a whole new set of fears?

Will he smother himself, something that I could have prevented had I been more watchful?

My mind has wandered towards these horrible thoughts all week. And as much as I try to push them aside, they continue to play on repeat.

I am a self-admitted control freak. And there are so many stinking things in my life that I simply just can’t control. So I have this tendency to try to play out every scenario in my mind with the hopes that I will prepare my heart for what might happen.

But boy, oh boy, worry can suck the energy right out of you. These thoughts exhaust me, and I can feel the weight of them growing heavier on my tired shoulders.

In Psalm 23 there is a verse that says “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me.

I never understood what the shadow of death was until I encountered these thoughts with Malachi. And there isn’t really a better way to describe them other than a “shadow of death” that lingers in my thoughts.

As a child of God, I know better than to worry…but I still worry.

Even as the worry sucks my breath away I feel conviction for letting it fester that far. But yet I still let it continue to overtake my thoughts and prayers.

I read a verse this week and it was like God snapped His fingers bringing my attention to something big in it.

1 Peter 5:6-7

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Read that intro again: Humble yourself.

I have always seen worry as a weakness, but as I read this verse I was reminded that worry is also a form of pride.

When we are unwilling and unable to release our worries to God we are assuming that they are something that we can handle on our own.

God wants to turn our stubbornness into a heart of submission…a heart that reaches for the rod and the staff for comfort, trusting that the Shepherd knows the path we are about to embark upon.

Pride has always been my #1 sin, although many other sins spawn from that pride. And now I see that my worry is no exception!

God doesn’t love me any less for this weakness. But He longs to take the burden from me that I insist on continually placing on my own shoulders.

So this week I will try to interrupt my worry tinged thoughts and replace them with prayers that God will uproot my pride. I pray that I learn to speak AND BELIEVE that God’s future plans for Malachi are perfectly in line with the will of God.

So here I am, again, casting my cares on Him. May God help me control my hand this week and not reel them in again!

Much love,

Leah

 

 

 

 

He Emptied Himself

Let’s start this week’s entry with a silly story from this morning. Hopefully it will make you laugh as much as I did. And the title of this blog is meant for the devotional at the end but is oddly fitting for this story too.

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And a short time-out to acknowledge how big Malachi is getting. Seriously, where did my tiny baby go? Facebook reminded me this week of how tiny Malachi was, hitting the 9 pound mark at 6 months old! My oh my how far we have come from his 1 pound 12 ounce birthday body!

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This morning I woke up and looked at my ragged face in the mirror- always a dangerous game and one I don’t often get time to play! We have had a jam packed weekend and Malachi woke up for the day at 3:30. As I looked at the bags under my eyes I decided to take an extra few minutes on hair and makeup before leaving for church. I even took the time to pick out a pair of earrings, something I never have enough brain power to remember. I just wanted to feel pretty this morning for some odd reason.

The morning was going wonderfully and I left the sanctuary with the boys when the preaching began; we always listen from the lobby area so Levi can be his wild self and I can still hear the sermon. I scooped Malachi up and put him on my lap and I suddenly felt the warm sensation of him peeing all over me, and the puddle of urine on my dress confirmed it. I was debating what to do, and I thought the first step should be to fix his diaper so he doesn’t do it again. Without being too graphic, I quickly checked to make sure everything was tucked into the diaper as it should be.

I leaned down to take a quick peek and as I did so Malachi contracted his little abs and shot a two foot stream of pee right into my eyes with a ridiculous amount of force…like a water hose to the face. Within seconds I was drenched, literally dripping urine from my hair. Pee was everywhere…running down my face, running down my arms, and all over the front of my dress….not to mention the puddle that was already on my lap.

I gasped and froze, not quite sure what to do in that moment. Then I realized what had happened and couldn’t stop laughing. I laughed so hard I started crying, which was probably good for flushing the urine out of my eyes. I texted Jake to come out of the service to help and when he saw that I was dripping like a wet dog he too started hysterically laughing. I stepped into the restroom to see what I could do about damage control and I saw the hair I had spent the extra time fixing and the eyeliner I had put on for the first time since Easter running down my face. The whole idea that I had tried and failed so miserably at looking presentable made me start laughing all over again.

Needless to say, I packed the boys up and headed home.

Moments like these tend to come more often these days. I am trying to learn to roll with the punches, but sometimes the moments are just so ridiculous that I can’t help but throw my hands up in surrender.

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We met with the Chattanooga pulmonologist this week about Levi’s Cincinnati trip. I had assumed that he had already read the notes that Cincinnati had send over but when he casually walked in and asked how things were going I realized that he hadn’t heard the news yet that his cords were still paralyzed. I delivered the bad news and he seemed genuinely shocked; his reaction was very similar to mine when the surgeon told me. He was confused, doubtful, and flabbergasted.

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Levi had a grand ol’ time looking at the boy in the mirror.

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Doctor visits are getting more and more difficult and exhausting these days. Levi wants to be mobile and I desperately fight to keep him from touching the germy ground in the medical setting. By the end we are all cranky and exhausted. I took this silly video of Levi as we were passing the time playing with bubbles.

Cincinnati would like for us to do another sleep study off oxygen and make sure that Levi is still breathing safely at night. Sleep studies are in the top three of things I absolutely hate to do to the kids. But if they think it needs to be done we will begrudgingly comply. We will be scheduling that soon, but it usually takes about two months to actually get him in there.

If the results say that he is breathing safely, insurance will be taking all equipment from our home. We have several tanks, an oxygen concentrator, and a pulse oximeter machine to monitor his stats and heart rate at night. He is only needing oxygen when he is sick right now but knowing it is there when we need it brings me peace. I am very anxious about losing the pulse oximeter as it gives me the peace I need to take my eyes off him at night. He is still dipping his oxygen a few times each week causing the alarm to go off so I jump up and make sure he is still breathing and doesn’t have his cords wrapped around his neck.

I looked into purchasing a hospital grade one like his and they are over $1,000. The disposable sensor strips alone are $25 each and he burns through those every 5 days. We may look into trying to get a grant to help cover that cost so we have the ability to monitor his oxygen levels, especially when he is getting sick.

Levi’s new favorite hobby is unrolling the toilet paper from the roll.

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The boys have also been so sweet with each other. I tried to snap a few pictures to document the sweetness for you. Malachi has been generously kissing Levi and Levi in turn wants to sit close to Malachi and hold his hand. I love their tender hearts so much.

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Malachi went to school three days this week! He is technically a first grader, but he is in a CDC classroom and spends a bit of time in inclusion classes. He was so excited to see his friends and teachers! He is so opinionated these days so I gave him several outfit options to choose from. Do you want to wear Superman? NO    Soccer ball shirt? NO     Big brother shirt? NO    Ninja Turtles? YES YES YES!!!

Ninja turtles it is!

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We have been trying something called Real Food Blends with Malachi, a diet that consists of pureed adult foods like salmon, squash, oats, etc made specifically for adults with g-tubes. It has been settling very well with his belly and sustaining him longer than his formula. Last year his school scheduled revolved around his feeding schedule so I wouldn’t take him in until 10:45 and pick him up at 2:00. This week we have been successfully doing 9:30-2:30! That is a really long day for Malachi but he is tolerating it very well, and he hasn’t had a single seizure at school!! That is wild!!

We found a new wheelchair tray and it has been an absolute game changer for his posture in the chair. Such a simple addition but it makes a world of difference for him. He is able to sit up at 90 degrees now and uses the tray for coloring and playing with his toys. This may be my newest favorite picture of Malachi.

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We knocked out grocery shopping, 6 therapy sessions, and a handful of doctor visits.

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We also attempted some new foods with Levi. Some went well, others not so much.

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Saturday we spent an entire day (7:00am-7:00pm) with the soccer team at a play day an hour away. I usually don’t get to go to these and stay all day since Malachi is so heat sensitive and can’t be outside for long periods of time. Our amazing friends volunteered to drive their air conditioned travel trailer out to the fields for us so we could have a comfortable place to sit with the boys between games. The gesture blew me away. The more I thought about their kindness the more it impacted me. Our days can be very long and very challenging and when someone chooses to step into our world to find specific ways to help it means so much. It is like a balm to my weary soul.

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This morning as I sat with Malachi I started to process what our friends did for us, and I got emotional. Life has never been easy for me and I have not often been a priority to others. I have had to get used to a life of sacrifice even at a young age, and sometimes that prompts some pretty big pity parties. But when we are a child of God, our focus shouldn’t be on our needs being met…we should trust that God will arrange those details for us and instead shift our focus to meeting the needs of others.

As I read through Philippians 2 this evening a few things caught my eye…

The chapter charges us to be like Christ, especially in how we interact with each other.

One of the biggest challenges for me is found in verses 2-4: “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 interests, but also for the interests of others.”

How often do we do these with hidden agendas and ulterior motives? We may be doing what seems like a selfless act but in the back of our minds there is a secret reason why we are doing it….do we expect something in return? Do we hope someone specific will notice or reward our kind gesture? How often do we mask our own ugly selfishness? The Holy Spirit is quick to play this verse on repeat in my mind and heart when I am guilty of this very thing.

But if you keep reading there is something noteworthy in verse 7; I want you to read it in context:

5 “Have this attitude in yourselves which was also in Christ Jesus, 6  who although He existed in the form of God, did not regard equality with God a thing to be grasped, 7  but emptied Himself, taking on the form of a bond-servant…”

As I read these words they pricked my heart. How often do I truly empty myself for others? How often do I gladly choose to take on the heart of a servant and give the fragments of the energy I have left to others?

When we are truly taking on a heart like Christ’s we should be looking to empty ourselves, and in turn rely on God to refill us. Why are we so cautious with our kindness, almost as if we believe if we give too much kindness away we won’t have any left for ourselves?

How often do we limit our selflessness due to selfishness? How often do we try to make our selflessness conditional based on our needs at the time?

I know I am guilty of both of these things.

So this week I will be praying for opportunities for me to pour out my reserve. Those tiny fragments I try to cling to are the result of my selfish nature; if we truly want to be like Christ we have to allow ourselves to be emptied.

Alright, my eyes are officially crossing as we approach midnight and Malachi is still wide awake! I am going to work on getting him ready for bed and starting tomorrow with a new, fresh, urine free face and eyes that look to fulfill the needs of others.

 

God bless,

Leah

 

 

 

Perfectly Imperfect

Let the games begin!

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Each August Jake heads back to work and life simultaneously amps up for us. The high school girls soccer team that we coach officially started their season this week which takes up every Monday, Tuesday, and Thursday afternoon. We are still youth pastors at our church which fills our Sundays and Wednesday night. Jake leads a boys only Bible study on Saturday evenings. And then there is life….lots of medical appointments and therapies every Tuesday, Wednesday, and Thursday. And add in my part time job at the church every Monday, Wednesday, and Friday from 10-2.

Life. Is. Bonkers.

But Jake and I both feel so strongly that we haven’t been placed on this earth for the four of us Carrolls. We need to pour out as much of ourselves as we can, trusting God to refill that energy supply.

With Jake back at work I took over bedtime shift, 4am shift, and early morning shift with the boys. Needless to say, my mood hasn’t been stellar this week as I am trying to adjust to the new schedule. I have been very short with the boys, getting frustrated at tiny little things. One morning this week I had yelled out of frustration which left both boys and myself crying and me googling anxiety medication. I felt terrible making them cry so I apologized and we prayed that God would help mom with her anger.

That night Malachi and I said another prayer that God would help him sleep through the night, something that hasn’t happened in months, maybe even years. We went to bed and woke up to sunlight peeking in the window! I snuck Malachi out of the bedroom so we wouldn’t wake up Levi and told him excitedly that Jesus answered our prayer! We rejoiced together and celebrated until we heard baby Levi crying in the other room. I set Malachi down to go get Levi so he could join the party.

When I walked into the bedroom and looked at Levi I saw that his outfit was sopping with formula. My heart skipped a beat as I ran my hand over his belly to check on his g-tube. And sure enough, one of my biggest fears had come true- his stomach tube came out in the middle of the night.

Stomachs heal insanely fast, so you have a two hour window to get the g-tube back in before the hole closes. Since it had happened in the middle of the night I wasn’t sure how far into that two hour window we already were and the local children’s hospital is an hour away. I stripped him down quickly to get a look and the hole looked completely healed. I grabbed a spare g-tube and pinned Levi down with my knees to try to get it back in and he fought me like an alligator. The tube did not go in and the site started to bleed.

At this point I was an anxious mess yelling out prayers to God for His help and running around like a wild woman. Levi didn’t trust me anymore since I had pinned him down so he was running from me as well. He likes sink baths so I filled the kitchen sink and set him in it so I could get close enough to look at his tummy again. I called a nurse friend down the road to come by and help hold him down and started to pack our hospital bags, assuming we were about to have to go into surgery. Jake is a basket case with medical surprises so I had zero intention of telling him until after the surgery was finished.

As I packed our bags my emotions overwhelmed me and I started bawling. This was the morning that God had answered Malachi and I’s prayer for sleep- and the devil attacked me in another way. Every single night when I get up with Malachi I check Levi’s tube, once when I get up with Malachi at 4 and once when we go back to bed at 6:30. Since Levi’s birth there has not been a night where I didn’t check the tube…except for this night.

I looked at the g-tube that had come out of his belly and the balloon that holds it in his stomach just completely popped. Think of an earring being held in an ear by a stopper on the back…and then the stopper essentially blew up letting the earring slide right out. Total fluke and not super common.

My friend came over and we tagged team pinning him down as I tried desperately to get the tube in. Fail. Fail. Fail. I ran out to the car and dug out a catheter I had in our emergency medical kit, hoping that the rounded tip might go in easier than the one I was trying. I know this all sounds so dramatic, but you need to know that for me in that moment it was totally dramatic! The muscles in my body were quivering with the stress of trying to hold him down.

And then the catheter went in. BOOM. I shouted THANK YOU JESUS and took a deep breath. If that catheter went in it meant the hole was still established. It took a few tries but I was able to get the catheter out and slide the tube in, avoiding a trip to the hospital.

Levi and I were both a mess by the time it was all over, and Malachi was wide eyed with excitement at everything he was hearing and the emotion in the room.

After my friend left I allowed myself another messy cry. We crave normalcy for Levi, and things like this remind me that we are far from that normal. I want to have normal mom frustrations, like cleaning up a taco my child chucked across the room. Not emergencies that involve me pinning my child down and inflicting pain on him. Blatant reminders like this chaotic morning are often an undesired reality check.

But in the midst of the stressful, we had some great moments this week too.

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Levi got to ride in a shopping cart by himself for the first time! He grinned the biggest grin when I first put him in. Then of course he spent the next 30 minutes trying to sneak out of it when I wasn’t looking haha. Being able to push him in the cart and just pull Malachi made life so much easier!

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The boys love the adventure of going to the soccer field with us. Due to the emergency potential I described above, we rarely leave the boys out of our sight. Thankfully we have my mom and some great friends willing to keep the boys company on the sidelines. We have been bringing Levi’s new truck so he is happy as a clam. And Malachi loves to hear the excitement of the fans. It does get a little hot so we have to be cautious about him overheating, but so far so good.

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Levi tends to attempt walking more on the grass so we worked on taking a few steps! He is so so so close to walking.

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The boys got to go to our soccer pool party….

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And our back to school youth worship rally and pizza party….

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And Malachi rode his horse like a champion. I wish I could get more photos of Malachi but he requires too much support for me to safely get good pictures of him. We started him on a new diet this week and so far it has had some pretty great results.

This week we have six appointments, including a visit to the Chattanooga pulmonologist to talk about the Cincinnati findings.

While we were in Ohio we were around people who aren’t used to Malachi. It is always so interesting to me to watch how different people interact with him. It always warms my heart when we come into contact with someone who truly SEES Malachi. Someone who sees past his physical differences and recognizes the sweet and silly six year old boy inside. Those people are rare and special, and Malachi connects with them instantly.

It is these people that take the extra few seconds to speak directly to him, and are surprised when he reacts to what they are saying. Malachi will always speak back in his own way, sometimes with his signs, sometimes with his eyes, and sometimes with his body language.

I always appreciate the people who see him and connect with him.

My friend told me a few weeks ago that she had a dream about me and the boys. She said when she walked in that both of the boys were teenagers and walked over to greet her. She looked at them surprised to see them typical and walking, smiling shyly at her as she talked. She said she turned to me and I unwaveringly told her “This is how I see my boys.”

When she told me this dream I teared up at its accuracy. I see them as whole. I see them as two of the most precious and beautifully unique jewels that God has ever created. They aren’t like everyone else, nor were they ever meant to be like everyone else. They are perfectly imperfect.

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Malachi’s spirit is special. And when others get a glimpse of that my heart is so proud.

In Luke 1 we read about the angel Gabriel appearing to Mary to tell her she was going to bear the Son of God. Gabriel starts out his introduction with: “Greetings, you who are highly favored! The Lord is with you.” He goes on to tell Mary “Do not be afraid, Mary; you have found favor with God.”

Sometimes I think we forget that God is hand picking each of us for specific tasks. For Mary it was to be the mother to Jesus. For me it is to care for two special little boys. Both of us mothers with tasks that we never imagined we would be given. But both willing and eager to carry out the assignment God has given us.

As I thought about Mary this week I fast forwarded to the pain in her journey of having to watch her son die, and I was reminded that sometimes that tasks that God asks us to do are not easy ones. Sometimes the jobs he calls us to are not glamorous, fulfilling, or desirable. Sometimes they end in unimaginable sadness and grief.

But before you were given that job, God looked at you and said: “That’s the one. That’s the one that can handle this task.”

Often times we look at hard things as a punishment. But Mary’s task began with God sending an angel to tell her that she had found favor with God. He saw her, He was pleased with her heart, and He trusted her to do a very important job.

When I read that I am reminded yet again that God sees a strength in me that I sometimes can’t see in myself. Maybe some of you can also find your “Mary moment” and recognize that God sees you as highly favored, which is why he sent such big things your way.

Please pray for supernatural strength this week as we continue to adjust to our new routines.

God Bless,

Leah

 

An Unwell Soul

We are safely back in Tennessee and trying to unravel from our tightly strung week in Cincinnati. We missed the pace that our rural Tennessee world provides. This week I couldn’t help but notice the high end people and polished areas that Ohio had to offer…and in the meantime my Tennessee friends were asking on Facebook if anyone had found their pot bellied pig “Piggles” who escaped from the house that morning (yes, pigs are inside pets here). Other friends were offering to bring their hounds to sniff the pig out. I missed the craziness and simplicity of this place.

 

Speaking of craziness, the bear has not been up to the house this week, although he has been hanging out in the woods next to the house and frequenting the road. As long as he stays away from the front door we are content!

Ahh I am avoiding starting the Cincinnati update. But I guess I just need to tackle it.

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We went to Cincinnati with high hopes that this would be our final trip. Back in early May Levi had a throat scope in Chattanooga and the pulmonologist excitedly announced that Levi’s cords were moving completely normally! Jake and I were ecstatic with the news! This was the miracle we had been praying for. We started taking the steps needed to get him off his g-tube and he successfully passed a swallow study. I fully expected the Cincinnati doctors to share in our joy and do a happy dance with us as they discharged Levi from their caseload.

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On Monday morning we met with pulmonology who seemed very pleased with Levi’s progress. He said it was unlikely he would even lavage (test the fluid in Levi’s lungs for food particles to see if he is aspirating) since clinically he looked so good. The appointment went great. He did notice some stridor on some videos we had filmed.

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On Wednesday we met with the ENT surgeon who has been tackling Levi’s complicated case with us from the first hour we flew in to Cincinnati. We really love her. She asked if we could send a camera down in the office right then and there to see the vocal cord movement; that movement is best seen when they have zero anesthesia or sedation in their system, and even easier to spot when they are agitated. A nurse and I locked Levi in a bear hold as she sent the camera down his nose. He was obviously screaming and we could all hear a bit of his stridor (squeaky breathing/gasping for air).

She pulled the camera out and said disappointingly “I’m not seeing any movement at all. They are still both fully paralyzed.”

Jake had left the room as he can’t handle seeing those torturous bedside scopes, so I was rolling her words around in my mind trying to figure out what in the world was going on. She said that many doctors who don’t see many cases of bilateral vocal cord paralysis can often mistake arytenoid movement for vocal cord movement.

Levi’s trip to the operating room the next morning verified that his cords are still paralyzed. At this point his airway is a decent size, which is why he is breathing so well without oxygen but as he grows that gap will likely not grow with him; the gap is created by a piece of his rib in the back of the cords which will obviously not grow over time. If that happens we will have to do more surgeries to open it wider and wider, each time risking his ability to speak and/or eat or drink by mouth.

We went from envisioning a life with a little normalcy for Levi back to a life of more surgeries, restrictions, and question marks.

I am currently running the gamut of emotions. This weekend I have felt defeated and angry. And to be honest, I am allowing myself to dwell in those emotions right now.

Before we heard the disappointing news, we were driving down I-75 and we approached the city landscape of Cincinnati. I was thinking about the exciting conversations we were about to have with doctors. I suddenly realized that I hadn’t thanked God for our miracle in awhile so I prayed with such an intense gratitude. I thought to myself “Thank you God, we finally won one! We finally had a prayer answered with good news instead of heartbreak!”

And as I have mentioned hundreds of times before to you, unmet expectations and disappointment are two of my biggest stumbling blocks in life. They bring about a deep, dark anger in me that I have to fight hard to get rid of.

Logistically speaking, Levi’s diagnosis and future remains unchanged from the path we were following in April. But since his “great news” in May we had started planning a different life for Levi. Starting back on the old plan again is hard for me to do.

Levi is safe now with his oxygen levels but we will still need to watch him closely for changes and intervene when needed. In fact, after surgery we loaded everyone into the car to head to Tennessee and Levi’s oxygen saturation was too low so we had to go back on oxygen… a visible reminder of our defeat.

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There is also a hidden sting that happens when we get bad news in appointments. Everywhere we go people ask “How did it go in Cincinnati?” and I have to verbalize the bad news over and over and over again.

The surgeons also mentioned that Levi has something called tracheomalacia (floppy trachea) and bronchomalacia (sticky lungs). They are very concerned that any respiratory sickness will put him in the ICU. They reminded us of the importance of keeping him as healthy as possible.

We will also be looking at removing his tonsils and adenoids in the near future to help open his airway a bit more. We signed off on the surgeon to put tubes in his ears if they were needed, since he is having so many recurring ear infections but the ears looked great so we are waiting.

Alright, pity party monologue over for now.

Time for some Malachi pictures too- they are harder to come by as we are often holding or supporting him and don’t have a free hand for a photo. I have some big Malachi thoughts these days, but I will save those for another entry.

We did get to do some fun things in Cincinnati in between appointments. The boys both really enjoyed the zoo, although Levi dwindled quickly from the heat.

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One of Malachi’s favorite things to do when we go to the zoo is pick out a souvenir afterwards. He had been pretty intrigued with concept of the rhinos, so I found a stuffed one in the gift shop and asked him if he would like for that to be his toy. He signed YES and I told him we would look around and make sure there wasn’t something he liked better. We found a giant lizard with spikes down its back so I added that into the options. “Do you want the rhino?” NO “Do you want the lizard?” YES YES! I absolutely love how opinionated he is.

The gift shop questioning continued and finally he settled on an alligator that made growling noises. And he was one happy boy!

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Both of the boys thoroughly enjoyed playing with family throughout the week. We were the audience for lots of plays and make believe and they always made sure to include Malachi.

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My little sister has a claw machine so we used the opportunity (and key) for this photo op.

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I also got to meet up with another Chattanooga mom two of our hospital days who is on a similar airway journey with her son. I was able to share a few things I wish I had known when we were transferred to Cincinnati. It is always refreshing to talk to other people who understand your lingo.

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Since we have been home the boys have been getting reacquainted with all of their toys.

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Ignore the unpacking mess in the background of all of our pictures! And the blue painters tape holding the air vents down…toddler life!

Here is a silly video of Levi singing karaoke:

And Levi apparently learned how to open cabinet doors while we were gone. Yay?

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I saw a photo this week that struck my heart…

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I saw myself in that mom, bloodied from all the attacks the devil has made on our family. I have a deep desire to preserve normalcy for each of my children, and I just feel like I am failing. Some of those darts are still getting past me.

This morning I did not want to go to church. I wanted to be in the presence of God and physically AT church but I didn’t want to barrage of questions I knew would be waiting on us. I didn’t want to speak the results because then they are more real.

As I was getting ready for church I put on a new necklace with a pendant that says “It is well with my soul”. As I looked in the mirror at myself I could see weary eyes holding back tears. I saw a defeated face looking back at me, and when my eye caught the words of that necklace I thought “It is NOT well with my soul. My soul is hurting, desperate to take away the trials these boys each face and unable to do so.”

I thought long and hard about whether I should take off the necklace since those words weren’t true for me. But I brushed the thought away, deciding that if I declared it maybe I could create the wellness in my dehydrated soul.

Then 5 minutes later the necklace literally broke off my neck. The chain itself broke in two. As it hit the floor I gasped, not quite sure whether to take the random moment as a God thing. But I feel in my heart that anything that happens can become a God thing if you look hard enough.

And here is the conclusion I came to: transparency and vulnerability is important to God.

He doesn’t want our forced grins and forced happy thoughts. He wants us in our weakness so that He can make us strong. It is the moments that our souls are unwell that give us an opportunity to cling to God and His goodness, desperate for a refreshing.

Tonight I looked up the words to the song “It is Well with My Soul”, written by Horatio Spafford in the late 1800s. The song was written after Horatio lost four of his daughters in a shipwreck in the Atlantic Ocean. He was on a ship several weeks later, passing the spot where the accident happened and the Holy Spirit laid these words on his heart.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

Refrain:
It is well with my soul,
It is well, it is well with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ hath regarded my helpless estate,
And hath shed His own blood for my soul.

My sin—oh, the bliss of this glorious thought!—
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.

But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!

And Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

There is so much beauty in this song, and when I read it even before knowing the history, I could hear the hurt in the authors words. But I also hear the hope he has in Christ.

I would be foolish to think that I am the only one this evening that has an unwell and hurting soul. We all have things that take away our peace. But my prayer is that, like the song says, God will whisper His peace to my soul.

I pray that God helps me process my disappointment and aching heart this week enough to sing the words “It is well with my soul”.

Thank you for continuing to pray for miracles for both of my boys.

Much love,

Leah

 

Radiance

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.

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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.

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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!!

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

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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.

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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.

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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.

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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.

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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

 

 

 

 

Effectual Doer

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!

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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!

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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.

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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!

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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.

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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.

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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!

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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).

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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.

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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.

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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

 

 

Fear Not

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).

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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.

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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.

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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…

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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.

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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

 

 

 

Glorify

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!

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

 

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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.

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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.

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Here is a sweet Malachi giggle video for you:

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

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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.

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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.

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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.

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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.

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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