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

 

 

On the Road Again

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

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

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

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

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

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

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

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

 

Leading up to camp we tackled our regular appointments…

Malachi went to swim therapy.

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

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

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

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

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

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

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

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

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

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

My faith is sometimes weak.

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

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

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

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

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

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

We are just called to obey.

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

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

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

Much love,

Leah

The Robe

The Carroll summer fun has continued this week with all sorts of adventures.

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We tackled lots of appointments and therapies with both of the boys, getting back into the swing of things.

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Malachi went to Vacation Bible School every night this week and had a blast with his friends. Of course his favorite thing seemed to be the recreation part. He had never played kickball before so adding in the concept of running somewhere after kicking the ball intrigued him. He scored a home run and when everyone cheered he was full of giggles. He was so joyful so I took a short video to share with you:

Malachi is a very routine oriented kid, and while he doesn’t mind a change in the plans, it takes him a bit to get into the groove of new adventures. After the first night of VBS I asked him if he wanted to go back the next night and he signed YES.

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I asked him if baby Levi could come (who is technically under the age limit so Jake would have to come with him) and he signed NO. We asked him each night and finally on Thursday he gave Levi the green light to join us.

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We try very hard to respect Malachi when he has an opinion on something. We always want him to know that we are listening and hearing the things he is trying to say, even though he cannot speak. Obviously if it crosses the line into being mean we won’t allow it, but we recognize his need to be independent from Levi every now and then.

We have actually been splitting the boys a lot lately and it is so interesting to see how their behavior changes when the other one is not around. Malachi absolutely cherishes the one on one time with Jake or I- he is very snuggly and sweet. And Levi craves our undivided attention when he is alone with one of us.

Levi’s nose started running this week and we noticed him getting a bit more clumsy than normal (hence the bruise on his head). Those have been the classic signs of an impending ear infection so we watched and waited. Last night the pain hit around 2am and he woke up screaming. This time he was tugging at both of his ears so we went to the walk in clinic this morning and had it confirmed- double ear infection. This is his second infection in 3 weeks so we are going to have to have a conversation with his pediatrician about putting tubes in his ears.

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Like I have said before, we have had a hard time getting walk in clinics to treat Levi for his ear infections. EVERY SINGLE ONE has hit on a Saturday night leaving us no other option but the emergency room where lots of germs breed. Now that he is off oxygen we have a bit more luck sneaking him in before they ask about his medical history and get nervous. This go around we made it to the final minute and the doctor asked if we had ever seen an ENT…busted. I had to explain that he has had nearly two dozen airway procedures in his 18 months of life and that we have several ENTs on speed dial.

Levi started his new antibiotic and crashed this afternoon. We are praying for a restful evening for him.

Today we had a celebration at church, complete with a petting zoo! This was right up Malachi’s alley and I couldn’t wait to take him out there to feel some of the animals. Unfortunately two of the things he hates the most is sunshine and heat so he shut down a bit, but he came out of his funk enough to pet and hold a few of them. I snapped a few pictures to share with you.

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Medicated Levi and Jake stopped by and got to snuggle a bit. We have been working on “gentle hands” and thankfully he did great with that concept.

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We are gearing up to leave on Saturday to take our youth group to camp in SC. Jake will be staying with the kids at camp (27 kids and chaperones) and the boys and I will be staying at a rental house down the road and traveling back and forth as needed. This year some friends at church who happen to be nurses are going to join me to help with the boys. If you remember the rat poop fiasco from last year you will recognize how happy having help makes me.

I have struggled a bit this week with triggers. Things that mentally take me off into the past as they remind me of a disappointment I have had to process. This week it was the gray bathrobe. I caught a glimpse of it in the bathroom mirror, hanging uselessly on the towel rack and it stirred up so much sadness.

We longed for Levi’s pregnancy to last longer than Malachi’s 24 weeks. I cautiously and optimistically put off all preparations for as long as I could stand it, wanting to make sure I wasn’t “counting my chickens before they hatched”.

The closer we inched to the goal 36 week mark (for medical reasons I couldn’t carry past 36 weeks or go into labor) the bolder I got with my imagination. I imagined bringing home baby Levi after a normal, uneventful 3 day stay. I imagined being able to breastfeed and meet my sons needs without medical intervention.

And that is when I did it- I allowed my hopes and dreams to morph into a trip to Target. I walked the aisles until I found the gray robe. It was going to be the robe I kept close so I could throw it over my pajamas when friends came by for a visit. It was going to be the robe that I packed into my hospital bag, ready to be used in the hospital bed as I breastfed my son for the first time.

I had big dreams for that robe.

This week it almost felt as if its presence was taunting me from its reflection and I started to feel that seed of bitterness starting to sprout deep down in my belly. I am beginning to think that disappointment will forever be my kryptonite…it will be the one thing that I can never get rid of alone. It will be one of the biggest struggles that keeps me connected to the Vine.

The robe sent me into the rabbit hole of Levi’s birth and the emotions of that day. Jake and I spent some time talking through it, which is something we don’t often revisit. Our hearts intertwined in their hurt during that conversation and in the end it made us both feel a bit better.

But the reality is that my life and your life is going to be plagued with disappointment. It will be riddled with bath robe triggers and reminders of past failures.

But the thing I often forget is that the devil is the author of those moments..they are not of God.

1 Peter 5 says “And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.”

Day by day I see the ways that God is restoring our family. Through each moment and period of suffering he builds our family stronger, firmer, and more steadfast. I have to choose to always see that truth.

Maybe you are in the middle of your restoration, or maybe you are like me and still in prayer for the day it comes. Wherever you may be in your life, believe with me that God will make us stronger, firmer, and steadfast into looking to Him rather than our circumstances.

I am so tired my eyes are starting to cross so I am going to wrap this up. Please keep my family in your prayers this week as we head to youth camp with our teenagers! And please pray that Levi’s ear infection responds well to his antibiotic.

 

Much love,

Leah

 

 

 

 

 

 

 

 

 

 

Later You Will Understand

This seems like an odd and over-dramatic statement but stick with me…

This is the first week since Levi’s birth that I have felt like I have been able to claim a bit of my identity back. Don’t get me wrong, I love my identity as Levi and Malachi’s mother. I will gladly sacrifice all hobbies, luxuries, and moments of alone time for them and their needs. But our world requires that everything orbit around medications, appointments, surgeries…I have forgotten what the old Leah looks like.

This week I read 27 pages from a book- a non-medical, non-special needs book. I sat in the sunshine alone for 45 minutes. I ran a soccer practice while Jake stayed home with the boys. I went to work alone and cleaned out filing cabinets. I ran a few miles on the treadmill. I rode in the van with the windows down!

I took a deep, much needed breath.

The boys have several routine appointments each week but this was a vacation week for some of his therapists. We only had 4 appointments, all crammed into one day. That left us with 6 days of normal family time! What a blessing!

We spent most of those 6 days at the house, Jake and I taking turns for some “me” time. We would each take a chunk each day to do whatever we wanted- nap, read, leave the house for a bit.

The boys both really enjoyed the down time as well, Levi into everything he can get his hands on and Malachi as his ready and willing accomplice. Levi is getting good at rolling Malachi into different rooms and climbing him to reach things he knows he shouldn’t have. I was cleaning one day and heard the distinct sound of an air register being pulled up from the floor and a loud thump of something going into the duct work. The culprit was gone by the time I made it over there and I had to spend several minutes trying to figure out how to dig an unseen sippy cup from the vent. If you come by our house, ignore the new painters tape on all the vents.

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I know I post a whole lot of pictures of Levi sitting on Malachi. It is because they are inseparable. It doesn’t matter what chair I put Malachi in, Levi will climb Mount Everest to get into his brother’s lap. I always ask Malachi if he is okay with Levi sitting there and he almost always signs yes. Levi brings toys up with him and shares so well.

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Here is a silly video of the two playing nicely:

Malachi is able to communicate so much without saying a word. On Saturday we headed to his soccer game and his Mickey Mouse DVD accidentally got paused unbeknownst to us. By the time we got there he had the most sour look on his face. I asked him “Malachi, are you okay?” and he signed an angry NO. We didn’t know about the DVD issue so we went through all of the body parts that could possibly be hurting him…”Is it your tummy?” NO “Is it your ear?” NO. When we figured out the DVD hadn’t played we asked him “Is it because you didn’t get your cartoon?” and he signed YES and burst out crying.

I was proud of him for communicating to us, but also a little bothered that we are raising such an entitled six year old haha! We are going to have to start working through those emotions when he doesn’t get what he wants. It breaks my heart that he got so emotionally frazzled and couldn’t communicate that frustration building in him.

He stayed pretty cranky even after the game started but scored a goal within a few minutes and popped right back to his silly self.

It was his last game for the season so he got a shiny medal, something he was so proud to get.

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Malachi’s number one fan! He finally caught on to the game, clapping avidly whenever someone kicked it into the net.

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When you spend a week mostly at the house, there isn’t a whole lot to blog about…

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We took some selfies.

Levi worked on his walking. Here is a video of him practicing with dad. Ignore the onesie wedgie:

Levi also learned how to make farty noises on the couches. This one was interesting to us as neither of us modeled the new trick:

Malachi played with all kinds of toys, using his imagination to pretend like they were alive and real. His favorite toy to play with this week was his switch adapted jack-in-the-box because it terrified baby Levi.

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We watched the Lion King, Beauty and the Beast, read lots of books and made up lots of games. Jake and I trash talked our way through Jeopardy each night and sang karaoke for the boys. We just felt so….normal.

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We looking in the backyard for more bears and watched the birds chase each other. We tried new foods and made a lot of old recipes.

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Levi made some great progress this week with his sign language, signing “more” on his own several times when he wanted more food. He is also folding his hands when we pray, which makes my heart smile. I tried to snap a picture without him catching me during our dinner prayer tonight.

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We knocked out lots of medical phone calls, fights with insurance, and appointment/trip planning for the next several weeks. We are still sorting out our Cincinnati appointments for our week long visit at the end of July.

Malachi had some temperature regulation issues this week, running a fever for two days. We think it is likely brain related because he isn’t showing any signs other than sneezing. We will continue watching him closely just in case.

Tonight Levi fell headfirst (for the second time this week) off of Malachi’s chair and hit his head on the tile floor. He was justifiably upset and hysterically crying which did cause his color to change quickly. I am sure if I had him hooked to the pulse oximeter at the moment that it would have shown a desaturation which bothered me from safe breathing standpoint. That is a big part of the discussion we need to have with his surgeons when we go to Cincy. While he is safe the majority of the time with his oxygen, what kind of damage will those brief moments have on him?

This morning Jake was given the opportunity to preach during the morning service. Every now and then when the preacher goes out of town he asks Jake to fill in for him. This used to make him extremely nervous, but this time seemed different. He seemed so confident in what God was telling him to speak about so I was really looking forward to hearing what he had to share. He spent hours preparing throughout the week.

Levi has been absolutely wild in church lately and sobs until he vomits if I attempt to leave him in the nursery. We made it through one verse of the first praise and worship song before his restlessness hit so I took both boys out into the lobby area for the rest of service. We are in a very rural part of Tennessee where technology hasn’t really taken over yet, but several weeks ago I asked them to run a speaker into the lobby for moms like me who have to sneak out with young children.

When Jake started preaching, both boys got very still and quiet. Levi crawled across the lobby and stared, mesmerized at the speaker that his daddy’s voice came out of.

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Malachi sat as still as could be in his chair, clinging to every word. They love their daddy so much! And I am grateful that Jake loves the Lord and leads our boys toward God through his actions and heart.

The verse I want to share with you all this week comes from John 13. In this chapter Jesus is with his disciples for the Last Supper, the final time he will meet with all the disciples before he is arrested. Jesus got up from the table and began to do something that none of them saw coming- he began to wash their feet.

I mention this often, but I am a genuinely awkward person. I don’t really know how someone morphs into “awkward” but that transformation happened pretty early on in my life haha! And when you know you are an awkward person, it just seems to breed awkward moments.

Whenever I read about the story of Jesus washing the disciples feet I cringe, just imagining how uncomfortable that moment was for the disciples. To see the person that you respect and admire take on the task of a servant…what a profound thing to witness. And add in the beautiful and pure heart of Jesus, doing that task simply out of love. No motives, no ill-intentions, just pure love for these men.

Other than using my imagination, I find myself unable to relate with this particular scripture chunk. It isn’t common practice for us to wash anyone’s feet. Sometimes when I read scriptures like these, that are difficult to relate to, I find myself breezing through them.

But there is one verse in there that pulled at my heart this week. Jesus comes to Simon Peter to wash his feet and he says in disbelief “Lord, are you going to wash my feet?”

Jesus responds in verse 7 “You do not realize now what I am doing, but later you will understand.”

I got chills tying that statement. I have such a visual of Simon Peter looking down at the Lord next to his dirty feet. I see Simon Peter’s face turning red with shame at the filth he has on him.

But the filth doesn’t even phase the Lord. Our filth doesn’t even make him flinch. He sees those dirty parts of our lives, the parts we try to hide, and he bends down to gently wash the filth away. Only a loving God would do that.

There are so many times in my life that I have found myself in Simon Peter’s place. Again and again God has come and found me in my brokenness, my sadness, my sin, my pain and simply cleaned my tired feet and soothed my broken heart.

I can almost visualize the kind eyes of Jesus looking up at me and saying “You do not realize what I am doing, but later you will understand.”

God is all knowing, but our human hearts can’t handle the power of that trait. So as uncomfortable and awkward as it may be, sometimes we have to sit in that seat and allow Christ to remind us that later we will understand why our feet have to walk the paths that they do.

One day I will understand why God took us across the curvy, rocky, sharp paths of Malachi’s journey.

One day I will understand why God put mountains in Levi’s path but hasn’t yet given us the ability to move them, despite our desperate please and bushels of mustard seed faith.

One day I will understand. But for now I am called to sit in that seat and witness the love that Jesus has for our family, as he sees our wounds from the journey and longs to soothe them with his tender heart.

I am called to take that love that Christ has for the Carroll family and share it with others. I am called to minister to other weary, dirty-footed travelers that we meet along the way. I am called to share with them the hope we have in Christ.

I hope you let Christ wash your feet this week- even if you are awkward like me 🙂

Much love,

Leah