Humility

Life is picking back up for our family, but we are still cautiously keeping the boys tucked at home as much as possible. We take turns fulfilling all of our obligations but the boys are going a little stir crazy at the house all the time. Right now between Jake and I we are leading 6 Bible studies in the evenings throughout the week and running two soccer practices! We run some of the studies in our basement and have the teens enter through the basement entrance so they don’t share air with our medical marvels.

On Saturday we went to check out a new BBQ place by the river; we saw online that they had an outdoor seating section that was isolated enough for us to feel comfortable taking the boys for an escape. We arrived right when they opened and no one was there but us, so we sat in the corner of the restaurant and enjoyed our food in the air conditioning. The boys were both pretty pumped about the adventure. It was a brief moment of normal.

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Jake will head back to work at the beginning of August and we will adjust to a new normal. With him being in such a germ susceptible setting we will have to function at home a bit differently. He will come in from school through the basement and shower downstairs, tossing his clothing straight into the washer each day. He will also be sleeping in a different bedroom by himself to keep him from breathing on the kids all night just in case he contracts something.

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In previous years if Jake started to come down with something contagious we would book a hotel and he would move out for a bit to protect the kids. But one of our quarantine projects was finishing a bedroom in the basement so he has a place to stay, which will save us some money!

Either way, it will be a big adjustment for our family as we go from 24/7 family time to Jake being exposed to the virus daily by hundreds of kids. We are still trying hard to keep our faith bigger than our fear!

We have obviously decided that Malachi will not be going to school this year, as the risks outweigh the benefits. We are still trying to make a decision about therapies for both boys.

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This week Malachi and I took a day trip to Vanderbilt to meet with the spine and hip surgeons. Jake graciously made sure I had enough naps in the days leading up to the road trip so I could be alert on the road. It is only 3 hours there and 3 hours back, but when you run on fumes all the time even those short distances can get dangerous. I downloaded some new songs on my phone and turned the drive into a karaoke party, much to Malachi’s enjoyment haha.

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Malachi’s spine is still at a 43 degree curve, which is only one degree more from where it was at last summer. For now it isn’t severe enough to require surgery, praise the Lord. The spine surgeon worries that a growth spurt may affect him in the negative direction but for now we are still prolonging that massive surgery.

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Malachi’s x-rays are so unique. The tubing that runs down his neck and piles into his belly is his brain shunt- it takes spinal fluid out of his brain since his brain bleeds clogged the original path of the spinal fluid. It is extra long so it can grow with him as he gets taller, thus avoiding an unnecessary brain surgery to replace tubing. You can also spot a very small bright circle next to his heart. That is the metal coil we placed in his heart procedure several years ago to close his PDA.

Malachi’s hips are still dislocated and are literally as bad as they could possibly get. The tops of his femur bone have not only migrated out of their sockets but are now up above the hip entirely. You can actually feel them through his booty. Getting them back into socket is not even a reasonable option, and right now them do not seem to be causing him pain. If they start causing pain we will have to do a major operation to saw off the head of the bones but obviously that is a last resort. For now we continue to wait and watch annually with both surgeons.

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I did talk with the orthopedic surgeon about Malachi’s legs turning colors when he sits in certain positions, but he said we shouldn’t worry too much about that as long as it remains positional. Malachi will also be getting new AFOs this week which will help cut down on the pressure sores he has been getting on his ankles.

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Malachi absolutely loved being able to go on a trip with just mommy and no Levi. He especially liked when Levi started crying because he wasn’t allowed to go.

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They sure do love each other, even though sometimes there is some serious jealousy between them. Levi has been asking to “hold” Malachi while they watch TV together.

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Malachi has been swimming like a pro lately with his primary goal being to get to Levi. We have been so impressed with his swimming skills this week; I took a brief video for you:

Malachi is such an exceptional kid! I wish you all could spend a day with him- it would change your perspective so much on children with disabilities.

And little Levi sure has been a firecracker this week.

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He mimics whatever he sees his daddy doing and I came out to find him settled on the couch reading daddy’s Bible and “taking notes”.

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There is a verse in the Bible that God loves to bring to my mind often, and usually in a very convicting manner haha! But oh the wonderful challenge that it is for me!

Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather in humility value others above yourselves, not looking to your own interests but each of you to the interests of others.”

This verse challenges me to strive for the humility of Jesus Christ…a humility that isn’t natural or easy to do. Humility is something that I think many Christians have lost sight of in the last several months. We have morphed into an every man for himself mentality and forgotten the challenge to be DIFFERENT than the world, putting others above ourselves.

I have read so many social media posts about masks, social distancing, newly enacted rules. Arguments flare up, each side adamantly arguing their stance both unwilling to budge on their beliefs.

As Christians we have been given a perfect opportunity to live out Philippians 2 the way Christ would have. Yet for some reason we are allowing our egos override our humility. Humility does not equal weakness, nor does it make you an ignorant pushover. Instead it speaks to a self-centered world that like Christ, we are going to regard them as more valuable than ourselves. It speaks to others that we are living for God rather than our own selfish desires.

What is more important to us as Christians…living the way we want or being a mirror image of Christ, living the way He did?

Don’t let the chaos of this world change the standards God has set out for us. Instead see them as opportunities to live out the word and desires of God.

This week let’s all try to find those selfish moments in our day and replace them with the humility of Christ.

God bless,

Leah

The Talents

Last Sunday afternoon we loaded up and headed out on a retreat with our youth group! There were definitely some noteworthy things during the retreat that I would like to share with you in no particular order.

#1 Malachi and Levi absolutely loved it. They have been locked in the house for so long that the interaction with others was extra special. They were exhausted by the time bedtime rolled around. We brought a king sized mattress from our house for me and the kids to crash on and set up a makeshift bedroom in a living room area of the main house. No medical emergencies or concerns the entire time we were there for the Carroll boys.

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I had some wonderful, godly friends take time off of work to come and help with the boys. This was the first time I have been able to sit in the worship services with the youth at camp, and what a blessing that was to me on so many levels.

We also had a four month old baby along for the adventure, and Levi in particular was pretty smitten with him.

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Interestingly enough, when Malachi got to hold the baby for the first time Levi grew very jealous and possessive of big brother Malachi.

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#2 The logistics of the camp worked out wonderfully! We had one snake bite from a teenage boy that tried to capture one but other than that we were injury free. With a total of 52 people there one injury isn’t so bad!

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There were a few new things to navigate along the way, like how to feed a group that large on the road in a pandemic. We ended up finding a local park and creating a makeshift Chick-Fil-A buffet using the wheelchair ramp.

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#3 GOD SHOWED UP! Within the first hour of chapel the Holy Spirit moved. We watched as these kids tasted the spirit of God, some of them for the first time ever, and it was a beautiful scene.

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We immediately recognized that God had some big things in store for the week, and of the eight years Jake and I have been serving as youth ministers, this camp hands down was the most life changing. Our final service lasted over 4 hours with the kids sharing testimony after testimony about the things God was revealing to them. What a faith strengthening scene to watch.

We are still winding down from camp and processing where to go from here. The kids tasted the Lord and now crave that feeling again. Jake and I have the wonderful responsibility to cultivate that within each of them and guide them as much as we can. I am sure I will be sharing that journey with you often in the coming weeks and months.

We came home on Wednesday afternoon and before we pulled into the driveway we already had youth calling to see if they could come over to talk more about God! What a blessing! We would love to open our home again for Bible studies and dinner for the kids each week but are going to spend some time in prayer and see if that is the direction God wants us to go right now.

On Thursday Jake’s family came into town to celebrate the fourth of July together. We have had a weekend full of cousin time swimming in the pool, splashing in the river, and other fun adventures full of laughter.

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And more babies!

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We attempted some sparklers and Malachi was a big fan.

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And then we attempted some fireworks and those didn’t go over too well.

And I know I have shared a similar video with you before, but each time I see Levi helping Malachi without being prompted it warms my heart. I pulled out my camera in time to catch him helping Malachi play a game with him; the look on Malachi’s face is so sweet:

This week I will be headed west with Malachi and taking him to Vanderbilt to see both the hip and spine surgeons. I am becoming anxious about this appointment. For children like Malachi, surgeries in both of these locations are common and extremely painful. These surgeries are BIG ones with months of recovery and regression of skills. We are praying that we can ward them off just a bit longer, but then part of me wonders if it would be logistically better to tackle them while he is still small in stature.

I will be making the trip solo with Malachi, and usually we go up the night before and spend the night. But with the COVID-19 being so prominent in that area of Tennessee I will be attempting to make the trip there and back in one very long day. I am in a constant state of sleep derivation and I always worry about being able to safely drive when I am running low on fumes. Please put my alertness on your prayer list!

While it was such a joy watching the teens at camp, it was also refreshing for my soul. Being able to worship with something other than the radio blessed my heart so much. I am one of those that connects strongly with God through worship so not being able to attend church every Sunday has left me craving that opportunity again.

Lately I have been really thinking about my purpose here on earth and what it is that God is calling our family to do next. I think about the day I stand before God- what will that conversation be like?

In Matthew 25 we find the parable of the talents. A talent is a measure of weight, like a talent of gold that held a high value. A man is going away on a journey and he entrusts three of his servants with different numbers of talents while he is gone. Here is a breakdown of what each of the servants did.

Servant #1: received 5 talents and immediately went and traded them to earn 5 more.

Servant #2: received 2 talents and gained 2 more.

Servant #3: received 1 talent and went into the yard and buried it to keep it safe.

The master comes back after his long journey and calls the servants to him to account for his talents. The first two servants presented their original talents plus their newly acquired ones. The master says to them “Well done, good and faithful servant. You were faithful with a few things, I will put you in charge of many things; enter into the joy of your master.”

But when he comes to the third servant the conversation is a very different one. He hands him back his original talent and explains that he was afraid and hid it to keep it safe. He says to the master: “See, you have what is yours.”

But the master is very upset that the talent hasn’t experienced growth while he was away. So unhappy, in fact, that he takes the talent from the servant and gives it to the one who has ten.

As I read the parable I can’t help but think about what I am doing with my talents. Am I taking the measure of faith God has given me and using it to produce more Christians, that is, to share the gospel with others and watch God’s kingdom multiply? Or am I keeping my faith buried…mine and only mine to have and to hold and wave in the air when the master returns?

Are you ready to stand before the Master and explain what you did with the talents He trusted you with?

I think about those first two servants and the excitement they must have experienced when their portions doubled, knowing that they would have something exciting to discuss when the master returned. Likewise, are we excited and anticipating that conversation in the same manner?

Or is our faith in that deep hole in the yard? Something WE know is there, but remaining in that safe, unfruitful spot so we have something to hand back to him when we come face to face.

Our faith is meant to be contagious. It is meant to experience growth…to multiply and to explode, impacting all of those around us in a mighty way.

This morning  7 of the youth stood in front of the church and shared specific things God is placing on their hearts. While they spoke, there was a radiance on each of their faces, the radiance that the Bible mentions adorned Moses’ face after he met with God on the mountain.

I think about the words in Psalm 34 that say “They looked to Him and were radiant, and their faces will never be ashamed…O taste and see that the Lord is good.”

On the faces of those teens I saw a new boldness, a new resoluteness that I have never seen before. They tasted the Lord this weekend and oh how sweet a taste they received. My prayer for each of them is that they realize the strength and power of the talents God has handed them. And that they recognize that we are called to grow those talents, not tuck them away to hand safely to God when we meet Him face to face.

And I will continue to pray over my talents, watching and waiting for an opportunity to watch them grow.

Much love,

Leah

 

Fear Is A Liar

This sounds a little unbelievable, but we were so busy this week I didn’t take any photos of the boys! I will be more intentional about my photo taking this coming week. The busy nature of the week took me back to the pre-COVID days as we strapped on different hats to tackle the always growing to-do list.

In our role as soccer coaches, we decided to have the girls host a blood drive for the American Red Cross. Their job was to recruit people to give blood and we set our goal at 30 donors. There is a nationwide blood shortage right now, and seeing as our family has been on the receiving end of many lifesaving transfusions it seemed like a good opportunity to give back.

We hosted the drive at the church where I work so I parked myself in the office and caught up on some office work while the donors came and went. We had nearly 45 people come through the doors to give, but several were unable to due to medical conditions or medications. Jake came to donate so we locked the boys in the office with me while he gave. He has a history of passing out after giving blood but not this time thanks to some apple juice chugging!

At the end of the drive I asked the lady if we had met our goal of 30 donors and she said we only had 29. Shockingly I passed their screening questions and got to be donor number 30! I have had a history with clotting disorders and received a transfusion after Malachi that didn’t mesh well with my blood, causing issues (kell antigen issues for any of my fellow medical nerds). I have always assumed I would not be able to give, and there is still a chance they won’t be able to use my donation but it’s worth a shot.

If you are able to donate blood, please consider doing so. Every blood donation saves up to three lives. It takes about 30-40 minutes to go through the whole process, and the actual blood donation part takes less than 10 minutes. If the Carroll clan can find time to do it, I am confident many of you can as well. I am not a fan of needles but when I look at my sweet Malachi and know how many times he has been stuck with needles it makes me feel like the momentary pain is worth it to save lives like his…if he can get stuck without whining surely I can too.

Next we put on the youth pastor hats. Now let me dump some emotions onto you for a quick second.

Back in April we canceled our reservations at our annual youth camp. We prayed about the decision and just felt uncomfortable taking the group to a camp with 400 teens from several other states while the virus was still a concern. But we felt led to do something with the group in place of the large camp.

After searching and praying, we found a rental farm 1.5 hours from here that would be perfect for a social distancing youth retreat. Everything is outside except for the food prep and they stay in tiny little cabins with one other person. We made the reservation with the fine print saying that we could cancel on June 14th without penalty if COVID was still a concern.

As June 14th rolled around Jake and I really tried to evaluate if it was a good idea to continue to pursue taking the teens there. In our rural county we have had 38 total cases of COVID but usually only 6ish active cases at the same time. For some perspective, Chattanooga is just 45 minutes away and has had a total of 2,321 cases. Overall our little sliver of God’s country has done very well. We felt led to continue to pursue the youth retreat and to place our trust in the hands of God.

Easier said than done.

I am writing this entry at midnight on Saturday evening as we won’t be able to access the internet at our rental. And all week long as we prep for this camp I can’t help but let fear creep into my heart. We are obviously taking Malachi and Levi, and will have a total of 52 teens and chaperones in the group. We have taken all the precautions you can possibly take- thermal temperature scanners, clorox wipes, hand soaps, hand sanitizer, etc. But there is that lingering thought of what if…

Each time I let the “what if” game begin I know in my heart that the devil is behind it. I can tell you with certainty that God has led Jake and I to make this retreat happen, and there is a kingdom purpose in it. So why do I continue to worry about God not protecting my family as we walk a path He has guided us to?

Fear is a crazy thing. And I have to keep reminding myself that fear is not of God. And it has proven to be one of the devil’s most successful tactics in my life.

I have to keep reminding myself that even if the worst case scenario happens- even if somehow my family contracted this virus and our sweet Malachi or our wild Levi passed away, NOTHING will happen to us that is outside the will of God. And each time I remember that simple fact, I am able to breathe that deep air again and relax.

When we start to remember that this world isn’t about us, but rather about the things God can accomplish THROUGH us your perspective tends to change a bit.

I firmly believe that God has already determined the day he will call Levi home. God has already determined the day Malachi will run and leap into the arms of Christ. So while we need to honor God by making wise decisions, we also must find rest and comfort in the timeline of God.

Daniel was thrown into the den, but it wasn’t the day that God had chosen. He shut the mouths of the lions. Even the wind and the waves obey Him.

When we walk confidently in the paths God guides us to we honor Him. So this week I am working on trusting Him and taking my steps with boldness.

Our theme for this week is “Be Bold” with the key verse being Hebrews 10:39: “But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved.”

In one week we have gone from not taking the boys outside of the house to loading them up with 52 teens and heading into the unknown. We also went from grocery curbside pick ups twice a month to me having to me making several in store Wal-Mart trips to track down 45 pounds of chicken, 60 hamburgers and 80 hot dogs (during a beef shortage), and enough food to feed 52 people 9 meals. Not to mention the toilet paper a group that size will need for a week. Let the games begin!!

And just to clarify, when we return home we will still be locking down as much as possible. There is a such thing as godly wisdom that we have to pray for. We are only making these exceptions this week because we genuinely feel called by God to do so.

Please join us in praying for protection over our entire group of 52. Pray that this is a life changing week for these young adults and that these next few days would become a part of their testimony.

And pray against the seeds of fear the devil keeps trying to plant in my heart.

Finally, this week marked the anniversary of Malachi’s Chick-Fil-A movie. I cry every time I watch it! I know we have a lot of new readers and I thought you might enjoy seeing the sweetness for yourself: https://youtu.be/_FqXgxnfzd4

Much love,

Leah

The Challenged Life

This week we begrudgingly packed up the boys and went to a necessary appointment for new orthotics for both boys. Malachi wears something called Ankle-foot-orthotics (AFOs) on both feet to keep his feet from folding up due to his cerebral palsy. With his CP his brain is telling his ankle ligaments to pull tighter than they should and the ligaments blindly obey the brain.

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His current AFOs were getting tight on the ankle bone and starting to rub pressure sores on his little ankles. It was about time anyway for him to get molded for a new set so we made the appointment.

Levi’s cerebral palsy also manifests in his ankles, but in the complete opposite way. Malachi’s ligaments pull too tight, but Levi’s brain is telling his ankle ligaments to relax making his ankles loose and floppy. We noticed that he is developing some pretty intense callouses on the insides of both feet. We talked with his doctors about orthotics to help keep his ankles and feet in the position they are supposed to be in and they wrote a prescription to be fitted for them. Levi won’t have AFOs that go tall like Malachi’s, but instead his will look more like a shoe insert that extends just above the ankle.

You can really see that loose ankle issue in this photo:

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It will take a few weeks to get them custom made and then we will go back in to make sure they fit right. Malachi was super excited about picking the theme that will be printed on them, but with our new orthotics company the options were very limited. We went with a fun base color and we will be adding some vinyl superhero stickers to make them just to his liking. He is oddly picky about which superheroes make the cut so we will see what kind of hodge podge mix we end up with! Seeing him have strong opinions on things brings me so much joy.

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Levi immediately kicked into medical PTSD mode when we entered the office and started crying. We were able to calm him down pretty quickly with some medical gloves and silly music on mommy’s phone. I was very thankful to have Jake’s extra hands to help with this appointment.

Jake and I coach soccer in our small town and our open fields have started for the season. We are being extra cautious with these, splitting the girls into small groups and keeping our distance from them as much as possible. My mom has been helping watch the boys during practices, but the weather has been so beautiful we brought them out to play in the grass for one of them. The fresh air and different environment was a welcomed change.

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Malachi has been on an antibiotic to “reset” the bacteria build up in his tummy. We were trying to find a way to relieve the tummy pain he has been having and it seemed to help a bit. But during that time on the med we did not swim in the pool (I will let you use your imagination as to why on that one). They were both thrilled this week when they got to take a dip again!

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We are working on getting a covered pavilion over the pool, but for now we are limited to dusk swims when Malachi can tolerate the sunlight in his eyes. The only problem with that is that the bears have been making their appearances earlier and earlier now that the blackberry bushes that cover our property are in full swing. We have had at least 5 bears make their way down our road (that we or our neighbors have laid eyes on) just this week. So our dusk swimming adventures are not as relaxing with momma on high alert!

Levi has been keeping us on our toes like always. He is heading into a frequent tantrums phase, which is mentally exhausting. We try to keep him as preoccupied and busy as possible and give him lots of chores to do.

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And we are continuing to work on his food consumption. He is trying a lot of foods but still unable to swallow them. With this bowl of cheerios he crunched them up then took them out of his mouth and wiped them on a napkin. We really have to let him call the shots on what he will actually swallow. With his vocal cords paralyzed open he is not able to protect his airway. So if a food makes him nervous, it makes us nervous too!

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We just continue practicing, believing that one day those cords will start moving again.

And let’s take a minute to admire Malachi’s insanely long eyelashes.

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I have been trying to organize the piles of things that accumulate, one of which being the medicine syringes. Every special needs mom has their favorite type and clings to them like gold! Good syringes that don’t fade the numbers over time are hard to come by.

As I purged the stash of ones that aren’t legible anymore I started doing the math on how many we go through in one week between the two boys. The end result is 98. And cleaning them is a bear.

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We received such a sweet and touching gift this week from a blog reader in Korea! She explained that she had taken some art classes and wanted to draw a picture of Malachi for us.

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What a precious gift for our family! And how perfectly does it capture our Malachi- spiderman shoes and all! I showed it to Levi and asked him who it was a picture of and he immediately responded “Chi Chi”.

But the picture is treasured for several reasons…

Through it I am reminded of the mysterious ways of God.

God has taken the testimony of a 7 year old boy who can’t walk or talk and used him to reach someone in Korea. That isn’t something I could ever do- it is an undeniable God thing.

But it also has reminded me that hope in Christ is contagious. This photo represents the Malachi my mind sees. I see the typical boy that is trapped in his broken body.

I had convinced myself that I was the only one who saw him that way….that could look past his “cant’s” and see him as whole. But a complete stranger in Korea sees him through my same hope filled lens. If there is one other person that sees my Malachi as whole then surely there are others.

When we start to see children like Malachi stripped away from their earthly brokenness we start to see them through the eyes of their Creator.

When I was in the NICU in Cincinnati with Levi I connected with a family and meeting them rocked my world. I remember the initial conversation I had with the mom, as I was pretty thick in the middle of a pity party for myself over our situation.

I asked her about her hospitalized child and she began to tell me about her unique and amazing family. She explained that she had 17 kids (WOWZAH) and that the majority of them had been adopted internationally and were considered special needs, mostly for physical reasons.

The daughter in the hospital at that time was named Madison. I had the opportunity to meet the whole gang, including Madison, and I can tell you that meeting this family had a profound impact on my heart. Madison had been put on an “un-adoptable list” due to her medical complexities but God opened the right doors and Madison’s story is unforgettable.

Recently an adoption blog did a write-up on this amazing girl and I would love for you to read about her and see her transformation. I am guessing it will touch your heart as much as it did mine: http://blog.madisonadoption.org/2020/05/27/madisons-story/?fbclid=IwAR1o2satxYZCpMNClC3uWUVeSxGfRxu3MGVm7NHw-p7iR3exVdk0VRhX-5Q

In our family, the challenges we face were thrust upon us. We rely on our faith to carry us through and we often feel like our heads are barely above water. But to see a family pursue the challenges again and again and again…what a example of the love of Christ. What a life changing love these children might not have ever known had this couple not pursued the challenged and uncomfortable life.

May we all continue to see others through the eyes of Christ instead of assigning our own values.

And may God continue to call my family towards the challenged life so that we may develop the eyes and heart of Christ.

Much love,

Leah

 

Laughter

Let’s kick tonight’s entry off with a video of Levi’s newly acquired skill:

Our area has been spiking with new COVID cases so we have been staying tucked in with the boys for most of the week.

And for those of you tracking our bear visits, they have been coming in waves over the last two weeks- papas, mamas, and babies. They haven’t come within camera shot but we have been hearing them outside after dark and the neighbors have been catching a few pics. The next door neighbor sent me photos of this gigantic bear- hands down, the largest one we have seen yet. You can tell a bear’s age by the placement of the ears- the wider they are on the head the older the bear.

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The other age sign to look for is their hind legs. The further out they rest the older the bear. The closer they stay together the younger the bear. img_4925-1

This week has been filled with a lot of laughter. Actually, laughter remains a pretty big constant in our world. I have started to see it for the gift it truly is from God, as it has such healing in it.

Sometimes we laugh because things are funny. Like goofy Levi running around in his winter hat pushing the fart button or Malachi swinging joyfully in his swing.

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Sometimes we laugh when things get awkward and almost dangerous. Like when Levi uses the big soup pot as a stool and finds the giant knives we have hidden from him. Jesus take the wheel!

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Sometimes we laugh to distract from pain. The pain of others, like when Levi trips over the soccer ball and hits the ground hard. Or when we change out a tummy tube on one of the boys- laughing and rejoicing like they have done something super special.

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Sometimes we use laughter to ease a tense situation. Like Levi this week as he attempted his first solo ride on the horse at therapy. He was scared, yet we continued to laugh and cheer and pretty soon he too was laughing and riding with confidence.

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And sometimes we laugh to keep from crying. Usually these laughs happen when I am running low on sleep and energy and something happens that is completely out of my control. Those are the “take a deep breath” moments to talk those tears out of falling from my eyes and focus on the humor of the situation. Like when we tried to increase Levi’s overnight g-tube feeds. While Jake took a quick potty break in the morning, Levi vomited in our king sized bed, tracked it (while continuing to vomit) across the house where I was sleeping with Malachi, then streaked that vomit onto that queen size bed too. In doing so, he woke up Malachi after I had spent hours trying to get him to sleep.

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But in the end, the laughter is truly a gift from the Lord and one I have learned to never take for granted. When you spend time in and out of hospitals with your children there are long periods of time where laughter can’t reasonably exist in your world. When you finally come out of those dark days and have that first genuine smile and first real belly laugh you realize the power and healing of those two actions.

I can vividly remember a time several weeks after the birth of each boy when I naturally and genuinely smiled over something, and I remember those moments because my face was so physically sore after.

Facebook popped up some memories this week, and ironically enough one of them was a video of Malachi’s first laugh. As you know, Malachi had such a rough start in life. We made it home but the blows continued to hit. He developed a very rare and damaging form of epilepsy a few months after we got home and the medication required to control them robbed his personality and cognitive development from us for several months.

He was 16 months old when we first heard it…Jake was holding Malachi over his shoulder while singing and doing the dishes. I was in the living room and we heard a strange squeak come from him we hadn’t heard before. My first instinct was to grab my phone and call 9-1-1, worried that he had stopped breathing. I grabbed my phone and ran over to him to find a little smirk on his face. As Jake continue to sing we heard it again- another shrill squeak.

I will never forget what that noise, Malachi’s unique and genuine laughter, did to my mommy heart. It sparked a hope in me that I can’t explain. It reminded me that there was a silly boy trapped in that body that enjoyed hearing his daddy sing silly songs. And as the years have gone by, Malachi’s laughter has continued to grow along with his big, sweet personality.

His laughter heals my heart. It breathes life back into me on hard days.

Here is a video of one of his belly laughs from the week:

But in Genesis 18 we read a story about laughter that reminds me that sometimes we laugh to mask our grieving. It can even become a defense mechanism that morphs into a rejection of belief in the impossible.

For some context, Abraham was sitting outside his tent and suddenly the Lord appeared to him in the form of a man with two other men with him.

Then they said to him, “Where is Sarah your wife?” And he said, “There, in the tent.” He said, “I will surely return to you at this time next year; and behold, Sarah your wife will have a son.” And Sarah was listening at the tent door, which was behind him. Now Abraham and Sarah were old, advanced in age; Sarah was past childbearing. Sarah laughed to herself, saying, “After I have become old, shall I have pleasure, my lord being old also?” And the Lord said to Abraham, “Why did Sarah laugh, saying, ‘Shall I indeed bear a child, when I am so old?’ Is anything too difficult for the Lord? At the appointed time I will return to you, at this time next year, and Sarah will have a son.” Sarah denied it however, saying, “I did not laugh”; for she was afraid. And He said, “No, but you did laugh.”

Sarah heard the words that her heart had longed to hear for years and years- she would have a son! And as these words pricked the center of her heart, she rejected them with her laughter.

Have you ever had a Sarah moment like that? A dream that you cling to and treasure deep down in your heart. The years tick by and the dream stays unfulfilled. For me, that dream is Malachi’s complete and total healing. I KNOW God can heal him, but each day I wake up and see that the healing hasn’t happened I deal with that grief and disappointment all over again.

I am sure Sarah battled the same bitterness root that I catch growing in my own heart. So when her dreams were spoken aloud and promised to be fulfilled within a year it brought forth a scoffing laughter, revealing the depth of those bitter roots.

I love that God calls her out on her internal dialogue. His response is short and powerful:

Is anything too difficult for the Lord

But that statement also reminds me that when we allow ourselves to scoff at the impossible, or believe it too big a task, we are essentially declaring that God is not able.

NOTHING is too difficult for God….healing my severely disabled son, waking up the nerves in my two year old’s vocal cords, fulfilling the promise of a son to an old woman…nothing is too difficult for Him.

But the line after that sentence is noteworthy as well.

At the appointed time I will return to you…

Every dream we carry in our hearts, every miracle we pray for, every unanswered prayer has a God appointed time.

Our belief in the impossible is so incredibly important, but trusting the timing of God is also such an important factor of faith.

So tonight I am forgoing the laughter of disbelief and instead placing my faith in “the appointed time” when I know God will heal my boys. It may not happen on this side of heaven, but I have confidence that one day I will see Malachi run and I will hear him say “I love you”. And I will watch Levi run with ease, breathing effortlessly and jumping up and down on straight ankles! At the appointed time.

God bless,

Leah

 

I’ll Keep Choosing You

This week we were able to get a break from the mundane as Jake’s parents came down from Ohio for a visit. We spent the week playing cards, swimming in the pool, and having good conversation. It really was a refreshing change of pace, especially for Malachi and Levi!

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As I mentioned before, we have been trying hard to get Levi to recognize Malachi’s ability to communicate even though he doesn’t speak. This week something has clicked for Levi and he thoroughly enjoys asking Malachi questions and reporting to me what he says. I will say “Go ask Malachi if he likes the movie he is watching.” And Levi will run like he is on a mission. I can hear his little voice talking to Malachi and a few seconds later he will run back to me and give me the full report. He hasn’t grasped interpreting yet, so he will mimic Malachi’s “no” face to me or mimic Malachi’s arm movement for yes.

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Malachi loves it just as much as Levi and their bond is growing stronger through it. Levi has always been relatively inclusive with Malachi, but now he wants Malachi to do EVERYTHING he gets to do. He is constantly making sure Malachi never gets left out. Watching their love grow is so special.

Case in point, this Elmer Fudd hat has been all the rage this week with Levi. He wears it all the time for some odd reason.

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But you better believe he makes sure Malachi gets a turn, giggling as he smashes it onto Malachi’s head. Seeing them laugh together is something I will never tire of seeing.

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Malachi has had a great, seizure free week (aside from his typical 3-4 a day). He has been all about watching movies and has started to branch out from the same few he watches over and over again. I got him to begrudgingly watch Toy Story and he loved it. When I told him there were three more in the movie series he was giddy with excitement. We give Malachi a list of 3-4 movies to choose from and then move slowly through the list allowing him to indicate yes or no, and he is bypassing his favorites for new Toy Story movies.

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I know I am his momma, but I am so proud of Malachi. I think about how frustrating and sometimes painful his world must be yet he always gives his best. And he is always smiling. I don’t get too many photos of him these days because he requires both of my hands to support him in most activities. But when I see ones like the picture below it reminds me of how much effort he has to put forth for simple tasks. Seeing him exhausted from trying so hard makes me so proud of him.

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Levi is still a pistol, always keeping us on our toes! Today I had a friend watch him (more on that in a minute) and she said he at some of his snack but didn’t finish it all. Without asking him to he dumped the rest of the snack into the garbage and put his bowl in the sink. I was so proud until she told me the next part where he went and washed his hands in the toilet. Kids have a way of impressing you and humbling you in the blink of an eye haha.

Levi really likes routines, and one he has locked in on is praying before our meals. As soon as we sit at the table he reminds us to pray and won’t touch his food until the “amen”. I couldn’t help but snap a few pictures to share with you.

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Today Jake and I celebrated our 12th wedding anniversary! With our family being somewhat on lock-down we knew it would be difficult to think of something we could all go and do together like we usually do. After talking over some options we decided Jake and I would try and sneak away for a float down the river by our house.

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Doing this is would require us to find someone to watch the boys- something we have never really been comfortable with. We have had plenty of offers but with their medical needs training someone to watch them would take as much time as the outing itself. We also recognize that Malachi’s seizures continue if he is uncomfortable or needs to burp (something he needs help doing) so leaving always feels selfish.

We reached out to our of our very dear friends who also happens to be a nurse and she and her husband came over and sat with the boys for five long hours this afternoon! I can’t explain to your how freeing that time was for both Jake and I. We are on medical duty 24/7, so not having to think about those things was so unusual.

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We were able to have some really wonderful conversations and rehashed our wedding day, moment by moment. We also talked about our honeymoon in Montana and how one day we would love to go back to that same small town and hide from the world for a bit.

We talked about how our circles have changed as our family as evolved. Some relationships have grown apart and others have become seemingly indestructible. We both recognize that we are a hard family to be friends with. When it comes to friendship we often don’t have a lot to offer…most of our energy and emotions go towards caring for our children. We do our best but fall short in many relationships.

We talked about how thankful we are that God opened so many doors for us early on so that we could grow and explore the world as a couple. God brought us together at such a young age and we were able to develop our friendship with one another before the challenges hit.

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When we started decorating our new house I decided to saturate our walls in scripture. I was browsing online a few months ago and spotted a sign that caught my heart. It said:

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

When I first read the sign my mind immediately went to my sweet Malachi. Read it again with him in mind. When Malachi was born we had a very hard talk with doctors about whether to continue lifesaving care for him, and we declared life over our sweet boy. We chose to fight as long as he wanted to fight. And we have no regrets.

I ordered the sign and when it came it I let it sit out for a few days, trying to figure out where I wanted to put it. It isn’t scripture, but when I read it I see the heart of God. And I see the heart we should have for God. I see relentless, unwavering love in its words.

Zephaniah 3:17 says “The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.”

This Bible verse is such a beautiful reminder to me that the Lord rejoices over us! He sees our flaws, our sinful nature, our dirty hearts and motives and he chooses to love us anyway. The purity of that unconditional love is overwhelming.

Alright, so back to the sign…

I walked by it day after day, reading its words and dwelling on them. And while the sign does fit for our miracle Malachi, my eyes started to see it through a different lens and apply it to Jake.

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

Marriage is a challenge. It starts out relatively easy but then morphs into something that takes a lot of consideration and effort. Putting another adult’s needs before your own is not a natural instinct and is something that takes intentional action.

Our marriage has ebbed and flowed with the tragedies and victories we have faced. The more our focus gets distracted from each other and redirected towards our boys, the more I see the importance of the phrase “I’ll keep choosing you.”

Marriage isn’t a one time ceremony. It is a daily decision.

So that sign ended up above our master bed. Seeing it daily reminds me of the effort I need to be putting forth in the relationship. Seeing it also reminds me of the value I hold in the eyes of God.

The love of God is a beautiful thing, whether you are receiving it or giving it to others.

Please continue to pray for healing for my boys. Sometimes I forget to pray for their healings, as I am distracted by the minor aches, pains, and diagnoses.

God bless,

Leah

 

Sufferings

Jake and I have been talking this week about how much progress we have seen in both of the boys in these last few months at home. Either they are making huge strides, or we kept ourselves too busy to notice- seeing such huge changes has been so good for our mommy and daddy hearts.

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Levi started confidently running this week! It is probably the cutest little run you will ever see. He tucks his little arms up and can get a little out of control but in his mind he his as fast as lightning. His cerebral palsy has impacted his ankles so he runs on the inside of his feet, but it is a functional run and he gets more stable each day. Here is a sweet video for you to see him in action:

Levi is also in an imitator phase and copies everything he sees others doing. It is actually entertaining to see the things he tries to come up with. We don’t listen to headphones but he must have seen some of the youth group teens using these when they used to come over.

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Malachi’s cognitive speed is increasing daily and seeing such clarity in thinking for him is just so special to watch.

 

He is so incredibly intelligent, so we have been working hard to teach him to have a voice. We give him options for everything we possibly can and try to wait patiently for his signs. We are also trying to teach Levi that Malachi has a voice and send him over several times a day with a question to ask Malachi. We tell Levi to watch for Malachi’s signs and it has become a fun game for the two of them. Malachi LOVES when we understand the things he is trying to communicate.

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This week I messed up a bit and didn’t completely communicate to Malachi about our plans. One afternoon this week we had to run by his school to pick up his things. I had forgotten about this time frame and was reminded by a text his teacher sent 30 minutes before it ended. I plopped the boys in the car and headed over, not explaining to Malachi what we were doing. When we got there he had it in his head that he was going to get to go into the school like normal, which obviously we were not going to do.

And boy was he MAD!! He kept signing no and making it very clear he was frustrated with me. We worked through it and by the time we left we got a smile out of him with his teachers.

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We spent the majority of our week outside enjoying the fresh air. Levi is getting bolder each day and actually let us swing with him this week!

And we have picnicked on the front porch almost every meal this week. The bears haven’t been back for a visit so I guess we are doing a good job at cleaning up.

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Poor Jake’s to do list has been overloaded with random projects my mind keeps creating. This week he had to use several power tools, something Malachi thoroughly loves. I parked him over by Jake so he could get close to the sounds and be a helper. Jake let Malachi have a turn with the power drill and he was overjoyed.

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Here is a video:

We also spent time watching the sunsets from the pool. Jake has been working hard on back filling it and getting it prepped for phase 2 (adding an overhead structure for shade for Malachi’s eyes). Every time we use it we talk about what an amazing gift this has already been for Malachi. It brings him joy but it also is so helpful for his tight tone.

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Jake and I have been trying to make an effort to do a daily devotional together, something we used to do early on in our relationship but have slacked on in the last few years. I remember freshman year of college going to a local Christian bookstore and picking out Bibles together in the same translation. We used to meet up in between our dorms on a park bench and each read the same chunk of scripture, underlining things that stuck out to us or pricked our hearts. After we finished the chapter we would talk through each of the things we underlined, and it was always so refreshing to hear one another’s hearts. I love looking through those Bibles and seeing all the pen marks, knowing that God was building our relationship to be grounded in Him.

Anyway, Jake and I started Romans a few weeks ago and yesterday we hit Romans 8. It took each of us longer than normal to read through it individually, as there are so many incredible verses to think through in that chapter.

When it came time to compare verses we had several in common, but one in particular pricked both of our hearts…

Romans 8:18 “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.”

Jake and I looked at each other with knowing eyes when we came to that verse. Before our special boys came along I don’t think I ever could relate to this verse. You grow up reading verses like these that talk about suffering, but never really knowing what suffering truly feels like.

I can tell you now with certainty living a life that contains continual suffering is horrific. Our hearts break each time Malachi cries out in pain from a tummy ache, or suffers another seizure leaving him confused and sad. Each time we hand one of the boys to a surgeon we do so knowing the suffering that they are about to endure post op.

Watching someone you love suffer feels somehow worse than being the one to go through it. Or at least that’s what my mind has determined.

But as Romans tells us, the suffering we are going through now isn’t even worthy of being compared to the glory of eternal life with Christ. Sometimes I catch myself focusing on the suffering now instead of focusing on what is to come…complete and total healing for both of my boys. When we shift our focus from earthly to heavenly things it reignites our hope.

If I hadn’t seen the suffering I don’t know that I would long so much for heaven for my family. The scenes continue to play in my head of the conversations Malachi and I will have, the walks we will take, the singing we will do together in the throne room. I like to think about running my hand over Levi’s smooth, tube free tummy and hear his clear and effortless breathing as he runs the streets of gold with his big brother.

These sufferings now can’t even be compared to what is to come.

Our sufferings have the ability to deepen our roots into Christ if we view them with the right eyes.

Please continue to pray for our little family. We are working on scheduling the surgeries and big appointments we have missed and it looks like we will be back in the operating room for Levi in August. We need prayers for health and strength leading up to these big appointments.

And if you get time this week take a look at Romans 8 and see what God might be wanting to point out to you!

Much love,

Leah

 

 

 

Spirit of Fear

Another week full of smiles and fun!

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This week we attempted our first post quarantine specialist appointment. Jake had to be at the house to meet a repairman, so I went solo with the boys. Needless to say it turned into quite the adventure!

I pulled into the parking lot with enough time to get all the gear and boys unloaded, but when I got the wheelchair out things started to go south. The chair had not been used in so long that it had gotten stuck in the 90 degree position and wouldn’t recline. I can’t even put Malachi in the chair at that upright position so I fought desperately with the chair trying to get it to budge. To get it to recline you have to squeeze each of the handles at the same time and slowly tilt it back. Since it wasn’t moving, I was squeezing the two handles and shaking it like a wet rag to no avail which created a quite hilarious scene for some nearby construction workers. I was sore the next day from shaking that wheelchair with all my mommy might.

There was no physical way to get both the boys up the elevator and into the office safely without the chair so I continued to fight, feeling the panic creep up in me as the minutes ticked by. Then after 10 long minutes finally BOOM it came loose! I grabbed Malachi and plopped him into the chair, then grabbed Levi only to find that he had peed through his pull-up, pants, onesie, and car seat. He was dripping with pee so I grabbed a towel, spare clothing, a new diaper and wipes and raced into the building.

When I got to the door it was locked and there was a sign with a number to call; that number led to an automated message that prompted you to push buttons to try to speak with someone. While I was three minutes into my phone call with the automated man, they called me and told me that the doctor was leaving because we were now officially 15 minutes late.

Long story short, the doctor waited and was very kind in spite of my lateness. The nurses let me know they were a little miffed, and grew even more irritated when I wouldn’t put a mask on the boys. With their respiratory issues I am afraid they can’t exchange CO2 like they need to.

As soon as we entered the exam room Levi’s medical PTSD kicked into high gear and he had a complete meltdown. I tried all the tricks in the book but none of them would calm him down. Malachi didn’t like that Levi was crying so he just got plain angry and answered NO to all of the questions the doctor asked me about him.

I was able to bribe Levi with gloves if he would stand on the scale.

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We went through the appointment and as we packed up to leave I heard it…the sound of a torrential downpour. I looked out the window and the rain was flooding the parking lot…a special needs wheelchair momma’s worst nightmare.

At this point I was in it to win it so I pep talked the boys (and myself) and told them they were about to take a shower. I found a small awning semi-close to the car where I could park Malachi while I loaded up Levi and off we went.

I was drenched within seconds and a sweet doctor who was driving by jumped out and handed me his umbrella and told me to keep it. The gesture was truly sweet but I needed both hands to wrestle Levi into his seat and carry Malachi safely. The doctor was still in his car watching and I didn’t want him to feel like his kind gesture was unappreciated so I tried tucking the umbrella under my chin and running with Malachi flopping over my shoulder. Oh goodness you can imagine what that must have looked like haha!

It was one of those moments where you just have to laugh. The boys were both wild eyed with excitement and I was soaked completely through. It was a big, sloppy welcome back to reality gift from the special needs mommy world, as if to say “Let the games begin!

Aside from the obvious chaos of that day, we had a great week with the kids. Malachi’s seizures have continued to ramp up randomly but overall better than last week.

Both of the boys did excellent in their physical therapy sessions on horseback. It has been really helpful for Malachi specifically to help improve his posture that has worsened during this break. I don’t know if you have been able to spot these negative changes in the photos I post, but below is an example of the weakness I am talking about.

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When he is on horseback he is required to hold his head up high which strengthens those muscles.

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Levi has been his goofy self, spending as much time outside as we will allow him to.

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We are trying to get him used to wearing a helmet for his horseback sessions, but he isn’t a fan quite yet. We can’t comfortably get a helmet on Malachi due to his shunt and microcephaly but Levi has no reason to not wear one while on the horse.

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I have typed five different devotionals and erased each one. My heart and mind are in so many places right now! I never go into writing the blog actually knowing that I am going to write about. Instead I pray that God writes this part for me, typing the words that someone needs to hear. I have caught myself tonight trying to steer it a direction instead of giving it to God so let me try again…

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It was on this week 7 years ago that we brought our miracle Malachi home from the hospital for the first time. It was the first time he was without wires, the first time we were alone with our child, and the first time we were primarily responsible for his care.

After 112 long days we walked out the doors of the ICU and loaded our little 6 pound 4 month old into the back seat of our car. I didn’t take my eyes off of him the entire ride home.

We brought him into our home and I still couldn’t take my eyes off of him.

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It was 3am and I still couldn’t bring myself to take my eyes off of him, even though they were so heavy with exhaustion. I had convinced myself that if I closed my eyes something bad would happen to him. He still had fresh incisions from his brain surgery and I could see the many scars telling his story all over his tiny body.

We were home but his body was still so broken and fragile. Both hips were dislocated, his femur was broken, and his feet were turned unnaturally upwards against his shins. We weren’t able to feed him like a typical baby because of his severe reflux and vomiting. Fear of the unknown gripped me in an inexplicable way.

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To be completely honest, I still have that very same issue some nights. As I stare at his warped frame, or watch his eyes flicker deep within his seizure I allow fear to creep back into my soul. I start to mourn over things that haven’t even happened yet. My imagination begins to create scenarios and outcomes that feed those fears until they become irrational and overshadow the truths I know about God and His plans to prosper me and not to harm me.

That first night home with Malachi I distinctly remember calling out to God and asking Him for wisdom in raising this boy. I asked Him to replace my fears with His wisdom and clarity of thinking. And in that moment he exchanged my spirit of fear for an inexplicable peace that could only come from Him.

“God does not give us a spirit of fear, but of power and love and self control.”            2 Timothy 1:7

Sometimes we try to convince ourselves that fear is an emotion that comes hand in hand with the role of motherhood and give it a position in our thoughts. But we have to see fear for what it truly is…a subtle but calculated attack from the devil. Your heart is not able to serve two masters, and when we choose to take on a spirit of fear we are communicating to God a lack of trust in Him.

This week my goal is to make an intentional effort to take EVERY thought captive. And like that first night home with sweet Malachi, I will be praying to God for His wisdom and strength. And may He continue to cultivate that spirit of power, love, and self control in each of us.

May God bless each of you,

Leah

 

Bow Down

After lots of deliberation and weighing the pros and cons we decided to take the boys out of the house and let them start physical therapy on horseback again. We spoke with the therapist beforehand and planned it out to the point where we felt like it was a low risk situation.

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Malachi has been riding for 5 years and was so excited to get back on his horse. His little body has not handled being home all day- he is usually in several seating options throughout the day when he is out and about. At home we only have three that we can switch him in and out of, most of which focus on his comfort rather than proper positioning.

 

Levi has been having a lot of balance issues due to his cerebral palsy in his core so we thought starting him on horseback therapy couldn’t hurt. We didn’t think he would last long, but he shocked the socks off of us by lasting the whole 30 minute session and actually enjoying it. We took a progression of photos from start to finish and you can see how much more comfortable he was by the end.

We will continue doing all of their other therapies via telemed through most of the summer. I am just not comfortable taking them into public places yet.

Unfortunately that same afternoon Malachi started having some pretty major seizures. I am fairly confident that the dust from the barn was enough of an irritant to set his brain into chaos. After having several large ones he was exhausted and limp for most of the evening so we spent time snuggling on the front porch bed and listening to the birds.

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For Christmas we got Malachi a big daybed swing for his treehouse, and it is his favorite place to sit with us. Finding comfortable spots for us all to snuggle is getting harder to find as he grows. Recently I spotted another daybed swing for sale on a local website and we snatched it right up and started trying to fix it up. I did a before and after for you but it isn’t completely finished. We will hopefully have the ropes on it by the end of the week.

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The boys also got haircuts this week (another first for Levi)! A friend came by house and did them for us.

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Levi has been keeping us on our toes this week with his crazy antics. I mentally bookmarked a few good stories from the week for you to enjoy…

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One morning Levi decided to help me mop. He grabbed the mop and when he couldn’t find the bucket of water he decided to use the only bucket of water he could think of- yep, the toilet. He got a few splashes and swipes onto the bathroom tile before I could stop him.

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That same afternoon we drove into town to give the boys an opportunity to get out of the house. Both Jake and I thought Levi was strapped into his car seat so imagine my confusion when I heard him breathing really loudly close to my ear. I glanced over my shoulder to find him resting his chin on my seat and staring out the front windshield. I obviously panicked and shrieked which scared him to tears. We pulled over on the side of the road and that little rascal had worked his way out of his car seat.

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In other news, we had another bear visit this week. We are pretty confident this is a different one than last week as he looked a little thicker and larger. Here is a video if you want to decide for yourself:

This week Levi has taken a new interest in his g-tube…well all g-tubes really. He is continually going up to Malachi and lifting his shirt to look at his and compare theirs. Then he ventures over to Jake and I to see if we have one. He is starting to understand that not everyone has a button like he has, and I am sure that concept has to be hard to grasp.

Tonight we did a minor surgery on one of his favorite stuffed animals and gave his monkey a g-tube.

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When we gave it to him his eyes lit up and he carried the monkey over to Malachi to compare buttons.

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Before he and monkey went to bed he grabbed a syringe and extension and pretended to give nighttime medicines and milk to his monkey. He has such a nurturing little heart.

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And one final feel good story for the week! We have been trying very hard to help Levi develop an understanding of Malachi and be a helper. We send him over to ask Malachi questions and are trying to teach him how to read Malachi’s sign language. Something has really clicked recently and he is continually bringing Malachi toys to play with, books to read that he knows Malachi loves, and just being an amazing little brother. Sometimes it brings tears to my eyes.

This week Levi went and got his crocodile game and made sure to help Malachi have a turn. I didn’t catch the original one on video because I was crying but he did it again the next night and I managed to video it:

A few months ago I read an article from the Gospel Coalition titled “When Kids Won’t Bow to Your Idols”. To be truthful, I can’t remember much of what the article said, but the title alone really infiltrated my thoughts. You can read the whole article here: https://www.thegospelcoalition.org/article/when-kids-wont-bow-to-your-idols/

But at the beginning there is a quote from Dan Allender that says “One of the biggest sources of conflict between you and your kids is when they refuse to bow down to your idols.”

I know that some of you may not have children, so change that part to “spouse” and I am sure you can find some points to relate to.

Lately I have been really trying to identify the idols in my life, and if I am being honest they are not hard to spot. What are the things that take my focus away from being Christ-like? What are the things that trigger me and why do I explode when those buttons get pushed?

Levi is like many other stubborn, strong willed two year olds. I expect those behaviors from him and recognize that they require correction and teaching. He is predictable.

But in a moment of pure honesty, parenting Malachi is where the quote above comes in. I feel shame even typing this, but I always try to be transparent and honest in case others reading are in the same situation.

One of my BIGGEST idols is control. My brain fights like a stray cat against anything that I can’t control. I haven’t always been this way, and I truly think it is a result of being a medical mom and being in so many life and death situations that I can’t control. But enough with my excuses…back on track here…

Malachi is not sleeping well at all these days. On a good day he is sleeping 5 hours, and after seven years of this I still go to bed every single night thinking THIS will be the night he sleeps a full night! And each morning before dawn when his brain wakes him up I get so incredibly frustrated. I get mad at Malachi, mad at Jake snoring in the next room, mad at life. I get mad because everyone else isn’t bowing down to my idols…my comfort, my control, my happiness.

If you really want to do some self reflection, sit down today and try to come up with 5 idols in your life. What are things that “rattle you when they’re threatened”?

The Bible warns us over and over again about the dangers that idols can have in our lives and hearts. They steal our focus away from the Lord and become something we turn to rather than Him.

This week I am going to pray for eyes to recognize my idol moments and divert that focus back towards God. He should never be in competition with things in our lives, and it is our job to spot the distractions and learn to hate them.

Please continue to pray healings and progress over my boys.

Much love,

Leah

 

 

 

 

 

 

 

Doing Good

Another week of tackling projects and wrangling these boys!

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This week I determined to make all the phone calls that I have been putting off. The boys have appointments and surgeries scheduled at three different hospitals in Tennessee and Ohio over the next 3 months and we needed to speak with the providers to see which ones could be postponed a bit longer. Levi’s Cincinnati trip and surgery has been canceled completely and we will attempt that one again in the fall. Malachi’s orthopedic and spine surgeons in Nashville didn’t want to cancel their appointments but we did move them to July. And we were able to move 7 other Chattanooga specialist appointments to late summer.

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Needless to say, I spent hours and hours on the phone. It is absolutely amazing how much Levi can get into in a matter of seconds! Trying to talk to nurses and chase around a half naked toddler who is swinging his dirty diaper around his head like a lasso is quite the challenge.

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Ignore the mess in the above picture. Casualties of me being on the phone!

We had a tiny little adventure this week, which exhausted all four of us. We usually take our youth group to a summer camp in South Carolina but just don’t feel at peace about them going this year. We have been trying to figure out something else we could do with the group and we found a farm about an hour away that has all the things we would need to pull off a youth camp on a small scale with just our group. Obviously we are proceeding with planning knowing that we may have to postpone due to COVID-19.

The place has small 2 person cabins (think “glamping”/glorified camping) on the property so the teens wouldn’t be sharing confined spaces. It is set up for large weddings with plenty of outdoor places for us to congregate with the group and study God’s word. We feel like this is the direction God is asking us to go, so we are trying to put our fears aside and walk in faith with the planning for the beginning of July. The boys would obviously be coming with us and is the marker we have chosen for their first public venture out of the house.

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On Monday we made the drive to the farm to look at the layout and figure out how to arrange the schedule for them. The groundskeeper unlocked the facilities for us to self tour and told us to take our time, so we ended up walking around for 3 hours. It is absolutely perfect for what we want to accomplish and we left there so excited but utterly exhausted. It was a wonderful change of pace.

In other news, the bears are back at the Carroll house. Here is a video of our newest furry visitor:

This big guy stayed for a few hours one night and I watched him closely on the cameras. He spent a little too much time hovering around the master bedroom window where Jake and Levi were sleeping (and where the shotgun was) so I went out on the back deck and yelled at him at he scampered back into the woods.

Malachi got a new swing adapter in the mail this week and has been absolutely loving it!

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Here is a short video so you can hear his giggles:

And while we are at it, here is a video of my helper Levi doing one of his chores. He also helps me unload the dishwasher.

I can’t believe how much both of the boys have been growing. Levi is getting long legs and a sweet little personality. He is my shadow, following me around every step and crying uncontrollably when I leave the room. I asked him this week “Levi, why are you obsessed with me?!?” and he quickly and casually replied “You’re pretty”. Jake and I had a good laugh at that quick witted response.

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Every year I have such a hard time with Mother’s Day and I still can’t fully understand why. This day is a day of rest and pampering for so many mothers around me but taking a break is something I don’t ever have the luxury of doing. Taking time for myself would mean burdening Jake and in my head I can’t justify that type of selfishness. The boys can’t turn off their medical needs, seizures, pump feedings, medications just because today is Mother’s Day. I guess this day always serves as a reminder that my call to motherhood is so different than everyone else’s…something I know and accept but sometimes mourn.

This morning Jake went alone to church and I stayed home with the boys. I could feel my emotions wavering so I decided to tackle a project to keep my mind off of things. I decided to organize the pantry which had grown embarrassingly out of hand thanks to my toddler “helper”. The distraction was working well until I dug deep on the bottom shelf and pulled out this.

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The night Levi was born the nurses tried so hard to normalize the experience for me, even though it was far from normal. Levi was taken by ambulance to another hospital with a higher level NICU, Jake was home with Malachi tending to his medical needs and routine, and I was alone in a hospital with a fresh c-section wound and no baby to show for it.

They brought in this bottle of sparkling grape juice and a package of sweet things that they give to all new mothers. I remember looking at this bottle and hearing the babies and mom’s in the rooms around me and feeling so empty.

I don’t remember bringing the bottle home but somehow it made it to our house and shoved into the very bottom corner of our pantry.

As I looked at the bottle this morning I couldn’t help but imagine how special opening that bottle and celebrating must have been for the families that receive them. For me today it was such a tangible reminder of our pain and our loss of normal…a second time.

But it also served as a reminder that the devil can use even the smallest, most unsuspecting things to throw us into darkness. He can take something that was meant to elicit joy and use it to brew a jealousy of sorts that our story isn’t like everyone else’s. Verse after verse in the Bible warns us against these tricks of the devil but oftentimes we don’t recognize them until they have taken root.

These days Jake and I sleep in different bedrooms, each taking a kid. Non-traditional and definitely not ideal but necessary at this stage in life. Levi requires nighttime feeds so we are up and down dealing with his feeding pump and untangling his tubing. Malachi’s little brain is constantly misfiring so sleep for him is rare and very shallow- the slightest movement wakes him up. Having them both in the same room right now is not possible.

Malachi and I stay in the living room until he falls asleep, then I carry him to the bedroom which is getting increasingly harder to do. Last night he was sound asleep and I was getting ready to carry him back to the bedroom; he suddenly woke up with his eyes bulging out and his arms waving frantically. I could tell immediately that he couldn’t catch his breath, and when he panics like this he completely cuts off his air supply.

I snatched him up quickly to try to assess what was going on and after banging on his back a bit he took a deep, long gasp of air in and started crying. The only thing I can reason is that he refluxed a bit and when the burning hit his throat he freaked out. I got him calmed back down and he begrudgingly drifted back to sleep.

I carried him back and laid down next to him and started to cry. Why are MY children scared and suffering? Why is MY 7 year old waking up terrified because he can’t breathe? Why does MY 2 year old cry in anger every time I hook him up to his feeding backpack throughout the day, clearly wanting to run and play backpack free like every other toddler? Why does he struggle to run and do other simple physical tasks?

And then the sadness transitioned into my journey into motherhood. Why have both of my babies needed doctors to restart their hearts and breathe life into them? Why I have had to see the things I have seen? Why won’t my son be able to verbalize that he loves me?

As I dwelled in my pity party God spoke as He often does through a Bible verse planted into my soul. Last night through my silent tears He was loud and clear:

“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.” Galatians 6:9

So what exactly is “doing good”? What does that look like?

The answer to that is different for each of us. Doing good is simply following in obedience to the things which God has called you to do. For me that includes caring for these precious boys in a Christ-like way. For others doing good is a completely different God assigned task. But to be perfectly honest, your “doing good” is something that will have a tendency to create a weariness in you…you will recognize it by the toll it takes on your heart.

And it is that weariness that urges you to stop, telling you that you can’t continue doing it.

But as the verse reminded me last night, in due season we will reap, if we do not give up. We have all been given a crop to grow. For some those crops spring signs of life quickly, rewarding our dreams and hard work. For others like me, we water and we watch. We weed to protect and we tend. But day after day we don’t see those sprouts of growth as we stare at barren land.

But the “due seasons” are different for each of us. And when we start comparing our crop to someone else’s we start to prematurely mourn our dry grounds and give up.

But we must remember that in due season we will reap. And it is that faith and unwavering belief that will give us the strength to water our dry ground day after day after day without ever seeing the results we expect to see.

So on this very hard Mother’s Day, I am choosing to throw away the grape juice bottles and remember that my path isn’t meant familiar to others. God is aware of my weariness and wants me to reach out my hands to Him and not let it overtake me.

Don’t grow weary in doing your good.

Much love,

Leah