Today I want to cut right to our surgery updates while they are fresh on my mind.

 

In order to do so, here are a few big background pieces you need to know:

-Levi was born with bilateral vocal cord paralysis, which means both vocal cords are paralyzed partially open. In his case they were paralyzed very close together and he wasn’t able to breathe when he was born.

-The current treatment for this condition is to put in a trach and hope that the cords start moving by the age of five, a 50% chance. This was the only option presented to us at birth, and I was devastated.

-We found a few hospitals across the nation that were trying experimental surgeries (had done 4 total surgeries at one and 19 at another) for Levi’s condition and two were willing and eager to try some things on Levi to avoid the trach. After much prayer we transferred him via air ambulance to Cincinnati.

 

-Much to our disappointment, Levi failed the first experimental surgery…then the second…then the third. After 4 months of trying surgery after surgery I had my pen ready to sign off on the trach. I asked to speak to the head surgeon one final time and he came up to Levi’s NICU room. I remember asking him “I need you to verbally tell me there is NOTHING else we can try.” I will never forget the look on his face when he said “Well, there is one more thing we can attempt but it is a very difficult surgery involving four surgeons. We have only done it on one other baby and he was much larger than Levi, but I am willing to try it.”

-Within the week Levi had a single stage laryngotracheal reconstruction where they placed a piece of his rib in his airway to help prop it open. It was successful and we were able to avoid the trach! One of the biggest fears the surgeons have had is that the airway wouldn’t continue to grow with him and in a few years our solution would not be enough and the trach would still be needed.

-From a parent standpoint we really took a gamble in assuming that Levi’s cords would not wake up by age 5 and treated this as a lifelong condition that needed a permanent solution rather than a temporary one. Levi is nearly three, so as of now we guessed correctly. His cords are still fully paralyzed.

We are on an annual checkup basis with the team in Cincinnati, and this was the week. Jake and I were both confident that his vocal cords had not awakened; we can still hear some squeaking when he is active and when he is sleeping which tells us they are pretty close together. But most of the time when we take him for these appointments there is some sort of trimming or stretching that needs to happen in the operating room. We sign off on all the possible interventions and wait and see what they end up doing.

We met with his surgeons leading up to surgery day and they were all very encouraged by the clinical signs they were seeing with Levi (what you can see/hear when you are around him and what his oxygen numbers are doing when awake).

When I met with them post-op they shared with me that he looks GREAT from an airway perspective. He has some floppiness in his trachea (tracheomalacia) and lungs (bronchomalacia) that looks stronger than last year. But the biggest news is that his airway IS growing proportionately with him! That was one of the biggest fears and unknowns that would lead us back to a trach conversation. His airway is naturally widening beautifully.

I asked if it looked like he would lose the ability to speak based on how wide it is getting and they said at this rate that we can expect him to continue to have a voice. I also asked if this would increase his chances for aspiration since the opening is wider leading to his lungs and they said that it looks like Levi is learning how to direct food and liquids down the right path for now.

We talked about Levi’s airway for several minutes, and their excitement was noticeably contagious. We have dealt with a lot of surgeons over the years, and I have never been able to see legitimate excitement on the faces of the people in the room. She shared with me how they had talked about Levi in the operating room and how severe his case was at birth. She turned to me and said “Levi has really defied the odds that WE even had for him. We were talking about how bad his condition was 2.5 years ago, and even we didn’t think we would send him home without a trach. But to see this work for him so beautifully has given us so much encouragement and hope.” She then explained that because of his success, they are starting to do this surgery on more and more babies with this condition to avoid the trach. I left that small conference room fully believing that they were as happy as I was with the day’s report.

Since this was and is still an experimental case we will continue to be followed likely for Levi’s lifetime. It doesn’t mean that the issue is “checked off the list” and we could be facing more minor interventions in the future on his airway but it seems we have crossed the threshold into “safe” enough to not even mention the trach anymore. The surgeons aren’t quite sure yet how much physical activity his condition will allow, but those things are minor and nothing to fret over right now. As of now, we will continue to go back each year for another look to make sure things are continuing to progress.

As far as the trip itself, traveling went well and I stayed awake by listening to some old movies on the portable DVD player. Sound of Music, Seven Brides for Seven Brothers, Cool Hand Luke. I kept a stash of toys in the passengers seat and tossed one to Levi every time he started to fuss.

We stayed with my dad who lives about 45 minutes north of the hospital. Levi had so much fun playing with my younger siblings and visiting with family. But sleeping in a new place really threw him for a loop and he stayed up most of the night prior to surgery.

The morning of surgery was a rough one with a Covid test for Levi. He was VERY VERY upset by the intrusion and still talks about the whole incident. The test came back negative and we waiting for another hour or so before surgery time.

Levi’s main surgeon came in and asked the same question she asks every time we see her: “Have you gotten a swimming pool yet?” And this year I beamed and shared with her that YES we have. In a very tearful medical conference with Levi’s team two years ago I shared with them my vision that both boys would be able to swim together one day. Trached children are at a huge risk when swimming or bathing and swimming is literally the only thing that Malachi can do independently. I remember mourning over those brotherly moments for them as we were close to losing that dream.

My family bought Levi a baby doll this week and it proved to be a lifesaver for him. He was so distracted by taking care of the baby that he didn’t get too restless. And the nurses were able to do each of the necessary steps to the baby doll before doing it on Levi, which helped him.

I had talked to Levi about what was going to happen when it was time to go to the operating room, so when they came in to get him he clung to me tightly and started crying. They had to pry him off and take him out screaming, which was so hard for my mommy heart. But I had to pretend for his sake that it was a completely normal thing to do and that I wasn’t worried.

It took them 5 pokes to get an IV this time around, and he had already awakened by the time I was called back to the recovery room. I never need directions to Levi in the recovery area, I just follow the squeaking! Once he got back into my arms he calmed pretty quickly and did not require any post-op oxygen. Shockingly after not sleeping the night before, he didn’t rest again until 9:30 that night. That is opposite of how he usually is, and this momma was too worn out to consider making the drive back to Tennessee that same day.

Surgery days are a whole myriad of emotions for me. There is the constant nagging of worry and fear, but I have to stifle those emotions and put on a brave face for the kids. They need to feel my confidence. My appetite disappears for days leading up to surgery and I have a hard time sleeping. The combo of it all is so physically and mentally taxing, and when it ends it is such a rush of so much relief.

This sounds a little crazy, but even Jake and I don’t talk much on surgery days. We are usually separated for them, as he cares for whichever child is not having surgery. I have a hard time talking about the things that are happening, and he has a hard time hearing them. So I text him when he is being taken back and again when I am done talking with the surgeons, but other than that we shut down for several hours on surgery days. It is best for both of us! Jake’s personality commits to the “ignorance is bliss” mantra…honestly you all know more about the actual day than he does haha!

I save my breakdown for when that first moment of solitude when we arrive home after a surgery trip. Jake takes both boys and I spend time crying in the shower and letting all the built up emotions go. Yesterday as I let the water fall over me I found myself crying out to God, “I’m so tired of fighting. How much longer do I have to keep fighting?”

Okay, now back to surgery day.

As I sat in that waiting room all of the memories flooded back to the many times I stared at those same windows and walls. I thought about the many emotions I had experienced in this same room…anxiousness, excitement, fear…but this time I just felt indifferent to the situation. And then I hated that I had become so calloused and indifferent to surgeries. I never imagined a life where major things would feel so minor. I was obviously worried about how Levi was handling things, but knew he was in good hands.

But then my mind wandered towards what could have been. I started to allow my imagination to process what this day would have looked like had we put a trach in Levi at birth. His cords haven’t started working yet, so we would still be in this same seat, staring at these same walls, but I would have been wracked with hope that THIS would be the time his vocal cords would be seen moving. Hope that THIS would be the day we got our miracle.

And while we haven’t gotten our miracle, God has led our family to the next best thing, and taken us on a healing journey. So maybe we did get our miracle? Who exactly decides which things are truly miraculous? Maybe our definition of miracle and God’s don’t match up the way we think.

As I sat in that chair I could visually see a tense, worried version of myself sitting there…a momma who was about to hear news that her son’s trach wasn’t ready to come out yet. That he would live at least another year with limitations, home healthcare, and disappointments. My heart felt her pain.

And then as I looked in the reflection of myself in the window I realized how truly blessed I am by God to be sitting in the waiting room expecting to hear that nothing has changed…and that report being good news.

Perspectives are astounding things. They can literally revolutionize a situation and breathe life back into it.

2 Corinthians 4: 16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an external glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

This week I got a glimpse of the “renewing” that the verse talks about. It is a process that sometimes we don’t get to witness, but nevertheless God renews us day by day.

Today I am thankful for the things that remain unseen. I am thankful that God’s plan for my family is so beautifully unseen.

And I pray that I can continue to find contentment living in the unseen. Without the glimpses of unseen moments that sneak into our lives, we don’t get the chance to really appreciate the seen.

I never imagined I would emerge from a hard surgery week singing the praises of our God so loudly. Yet here we are.

Thank you for your prayers this week, and all the many ways you lift up our family behind the scenes.

Leah

 

We had another week of survival mode in the Carroll house, desperately hoping each night would yield more sleep than the previous one! I *think* we are getting closer to finding that routine we so intensely need and I am praying our Cincinnati trip won’t mess with the flow.

Malachi has been struggling with tummy aches that lead to some pretty awful seizures. One night this week his seizures kept him awake until 5am, then Levi woke up for the day at 7:30. I think the biggest battle for me is mentally dealing with the unmet expectation of sleep. Thankfully today was a slower day for us and we took turns getting a nap in!

Malachi’s seizures have caused his little brain to go haywire and his body temperatures have been up and down. His forehead will feel perfectly normal but his back will heat up to over 100 degrees. It is definitely a brain issue rather than a sickness issue but it requires some creativity on keeping the hot spots on his body cooled down.

We have been spending a lot of time in the playroom- in the pictures below you can see Levi pretending to shave Malachi’s face. It made me smile to see him want to take care of brother, and it also made me consider how this will likely be a reality for the boys in the future. I hope that little Levi’s desire to help care for Malachi always stays this strong!

Sunday night Bible studies in our driveway have been working wonderfully. Thanks to some helpful friends we are able to keep the boys away from the crowd, and all bathroom trips are in and out through the basement.

This weekend Jake and some of our amazing friends tackled the therapy pool pavilion again and made so much progress! We are so incredibly blessed to have such a support system in our lives to help make our goals for Malachi a reality.

This weekend we have spent hours out there. Now that the sunshine issue has been taken care of, Malachi is extremely comfortable. Tonight we sat out there with our toes in the water and watched the sunset.

Last night my brother and his family came out for a night of swimming and smores, and watching Malachi swim with his cousins was so special to me. He was so proud to be swimming all by himself with the big kids. He also really liked sitting by the fire.

 

Inclusion is so important to Jake and I, and being in a home that provides those opportunities for Malachi to be included in everything is a dream come true. We are so blessed beyond what we deserve.

Levi has been in full on mischief maker mode. His energy never seems to end and his curiosity is increasing each day.

I have felt anxiety creep in this week as I mentally start to prepare for our Cincinnati trip on Thursday. I keep flashing back to the lobby of the hospital, and the exact place I was sitting the night we arrived. It was around 3am and I had gone down to the lobby briefly to meet my dad. While we were talking my phone rang and it was the NICU doctor telling me that Levi had just coded and they were bagging him. I jumped on the elevator and raced back into the unit to find Levi’s lifeless body rising up and down with each puff of air the doctor manually put into him.

There are certain scenes my mind will never forget, and unfortunately Cincinnati Children’s Hospital was the backdrop for many of them. Anytime I enter that hospital my heart sinks as the memories flood back. This will be the 27th time I have sat in the OR waiting area, anxiously awaiting the call from his surgeon to tell me they are done and he is stable.

I will start the pre-surgery routine this week…clip my fingernails off so I can’t chew them, wear dark colors in case he ends up with post op bleeding, delay drinking liquids that morning so I don’t go into the bathroom and miss them calling my name over the loudspeaker.

One of the highest anxiety times is the moments after the surgery when I am shuttled into a small room and wait for them to come in and report the outcome. With his airway issues we never know what they are going to have to do before he enters the OR so I am always eager to find out what they ended up cutting, stretching, and fixing so I can know what recovery will look like. And then as soon as they are done talking my anxiety mode switches to getting back to the recovery area to lay my eyes on my son. Almost every time I can find him with my eyes closed just by following the post-op squeak he often has…it is one of a kind.

This week Facebook memories brought up this photo from 5 years ago.

What a precious little lamb! Up until this point Jake and I had done a pretty decent job of holding tightly to our hope for Malachi to typically develop. But at two years old Malachi still wasn’t able to sit independently and medical professionals started to talk about assistive devices and wheelchairs. They were so kind with their words, recognizing that our hearts weren’t ready for a reality check.

We borrowed this wheelchair for a few weeks to try it out and this was his first time in the chair. As I studied this photo this week it reminded me of the emotional journey we have been on as we try to process life with special needs children. It is a complex journey that is filled with so much joy, sorrow, and unique perspectives. I wrote a small post with this photo on my Facebook page and thought I would share it here as well.

Tonight as I mentally prepare for this week’s medical trip I find myself wanting to mourn again over our loss of normal. But as we read in Matthew 5:

Blessed are those who mourn, for they shall be comforted.

I believe with all my heart that God didn’t design us to sit in a state of mourning for very long. We can mourn over our sin, we can mourn over death, we can mourn over disappointment. But it is during those moments of brokenness that we must soften our hearts enough to receive the comfort God is eager to give.

God didn’t design us to dwell in the brokenness. But brokenness can be a catalyst for our hearts to call out to Him.

Clearly I am still struggling immensely with moments of grief and brokenness as a mother. But I am so grateful that time and time again God receives me with open, comforting arms. Mourning in of itself isn’t a bad thing, but finding a comfortable home within it instead of desiring to run to God can be.

I apologize for the splotchy blog entries lately- I am usually trying to get the boys calmed down for bed as I type them so there is no telling what the final outcome will be. Please cover our family in prayer this week; specifically for these things:

-safety for Levi and I as we travel

-health and sleep for Jake and Malachi as they stay in Tennessee

-comfort for Levi’s medical PTSD

-minimally invasive surgery needed…and no surprises!

-a report that his vocal cords are moving (our miracle)

-wisdom for doctors and Jake and I to know what to do next

I am praying that next week’s blog will be full of wonderful reports and praises!

Much love,

Leah

This week we made the trip down to Chattanooga for appointments in the cerebral palsy clinic. The boys share several specialists, and thankfully this was one of those doubled up days.

 

 

The hospital building the specialists are in was eerily empty, which I was thrilled with. They did temperature checks on the way in and only spent two minutes in the waiting area before we were taken back to a room. Everyone was masked up and extra cautious.

The CP clinic measures each of the boys spasticity so we can watch and intervene as needed. They also help with orders for equipment and new orthotics for the boys. When and if Malachi ever needs botox injections in his tight muscles they would handle setting up those procedures as well. Botox works very well for children with specified areas of tightness but Malachi’s is all over so it makes him a poor candidate.

Levi has hypotonic CP (low tone) so he is very bendy and floppy. They were very surprised at how well he was walking and running since he runs on the inside of his feet.

Malachi has hypertonic CP (high tone) in his lower extremities and hypotonic CP in his core so he is classified as mixed CP. While they were checking his range of motion they pushed a little too hard on his very tight knee and he signed no, but they didn’t recognize the sign and continued to push him. As soon as I saw his no face I told her to stop but it was too late and he burst into tears. It took a bit for us to calm him back down, and he was very distrustful of her for the remainder of the appointment.

The boys have been running me ragged this week. I was hoping to have found a groove by now with their sleep schedule but somehow we are more wonky than before. The night before our CP appointment Levi stayed up until 4am and Malachi woke up at 7.

Last Sunday night I hit “post” on the blog entry and found that Levi had opened the Clorox wipes and put one in his mouth. I jumped up and snatched it before he could run and on my way down my finger caught his tummy tube and plucked it right out. OOPS! I was able to get a new one in quickly but emotions ran high for both he and I throughout the process so we stayed up until the early morning hours.

They love snuggling together at bedtime. Once I get Levi asleep I can transition him into his bed, and this week he has done better about staying in it most of the night. And Malachi and I have been working on our ninja skills to sneak out of the room when Malachi wakes up each morning.

Our evenings have been packed full of events. We are still keeping the boys tucked in away from crowds as much as we can, so we figured hosting things in the driveway was the easiest way to manage our kids and our extra-curricular things. We open the basement door up so there is access to a bathroom and keep the teens in the driveway/hot tub area.

On Tuesday we hosted a movie, hot tub, and pizza/smores night for the girl’s soccer team. Jake stayed in the house with our boys and I spent time with the girls outside from a distance.

 

Friday night we set up the giant movie screen at the church and held a community drive-in theater for an outreach event. My mom sat with the boys at the house so Jake and I could both be involved. We prayed over each family that came out and served dinner and snacks. This was our first trial run and we had over 50 cars come out (for our small town that is a lot)! We also sent home a family Bible study with each car to try to get them to plug into God’s word.

Tonight we had the youth group come out to our house for driveway Bible study. We are trying to find safe ways to continue our ministries and tonight went wonderfully. We had about 35 teens show up and we were able to keep everyone relatively spread out in our front yard area. These plans may have to change if the virus continues to spread in our small town.

Jake is taking extra precautions, which means he showers three times each day (after any encounter in public) and goes through four outfits. My laundry has quadrupled this week!

As we prepare for Levi’s Cincinnati surgery in two weeks, I am forced back into special needs land. Sometimes I can convince myself that our life is not that different than everyone else’s; and while I know that it is a lie, my heart let’s me fully believe it.

Thinking through logistics of traveling for surgery is complicated. Not to mention thinking through the things needed for Jake to succeed alone with Malachi in Tennessee while we Levi and I are gone. They will need to keep the van for the wheelchair , which means I will need to make sure our other car is safe enough to make the trip. I will have to dig out oxygen tanks and regulators again, as he needed those post op for a few hours last surgery.

The hidden side of special needs parenting that you probably don’t have a reason to know about is the massive amounts of insurance paperwork we deal with. For example, we got a letter in the mail this week from insurance saying that Levi’s upcoming surgery would not be covered by his secondary insurance. They said that there is someone in network at Vanderbilt that could do the surgery and traveling to Cincinnati was unnecessary and therefore not covered. I will work on the appeal this week to try to help them understand the experimental nature of his initial procedure and how important it is to be followed by the same specialists that performed it.

Total side note, here is a photo of this week’s progress on the therapy pool. We are getting closer and closer to our roof!

In all honesty, I am burned out right now. We are back to so many plates swirling in the air and paired with a lack of sleep, my days all merge into one incredibly long one. We find ourselves frequently evaluating if there is something God is calling us to get rid of.

I know He has a plan in all of it, but boy am I exhausted! The easiest one our minds constantly ask God about eliminating is our role as soccer coaches. Since we aren’t able to talk directly about God with the girls, there is more of a challenge in that role to make an impact for the kingdom of God. Not to mention how time consuming it is year round. But every time we ask God, he is very clear that we are to continue…8 years later here we still are.

This week we invited the middle school soccer team to come and practice with the high school team. We thought it would be a good opportunity for our high school girls to teach some younger players. We ended up with 44 players on the field and had a great practice. At the end we circled all the players up (6 feet apart of course) and asked the girls if anyone had a “call out”, something we do at the end of every practice or game. We give the girls an opportunity to compliment a teammate on something they did that caught their eye. We do this for several reasons, but the main one is that we are trying to teach the girls how to build up instead of tear down. The way of the world is to compare and tear down, but the way of Christ is to speak life into situations and people.

Immediately the hands of the high schoolers shot up all over our circle. We watched as high school players spoke life into the middle school players. Watching their innocent little faces light up as each one received a compliment literally brought Jake to tears. Those compliments are words those young ladies will never forget.

Sometimes we are called to things that don’t make sense, like coaching soccer when life is bonkers. But sometimes those callings are deeper than what we realize. Without overtly speaking about Christ to these players God has used Jake and I to successfully create at atmosphere that reflects God. We have created a culture with those girls to focus on the praiseworthy and regard others as better than yourself. We have been able to create value and worth in a demographic that the world steals those very things from.

Jake and I may never get to see the sprouts from the seeds God has been calling us to plant. But it isn’t always our job to harvest….sometimes we are simply called to plant and water.

We are called to a life of obedience, not results. It is our faithful steps up the staircase that bring Him joy.

I know that really isn’t a good devotional, but I am hoping that it may encourage you in whatever odd task God has called you to.

Alright, it is officially midnight and one boy is asleep and the other is close….that’s my cue!

May God bless you this week,

Leah

This week we started settling into our new routine as Jake headed back to work for teacher workdays. Almost everyone was masked for these meetings and they practiced social distancing so we felt comfortable with things this week. Starting tomorrow students will be returning and our district is not requiring masks. Jake will obviously be wearing one and we will continue to pray protection over him and everyone in that building.

Side note here- Jake and I are still very cautious about taking the boys out in public, but he and I take turns running soccer practices with the high school girls, running Bible studies, and attending church. We even held a back to school cookout at a local campground this week with about 40 teens. Tonight we had the youth girls over for a “driveway hangout” and plan to do another one on Tuesday night with the soccer team. We social distance as much as possible in these settings and use the common sense God gave us. When the boys do have to attend, they stay in the periphery with one of us. We haven’t been in strict lockdown like we were in March, but still are very cautious.

But there is something that feels so out of control about Jake teaching a whole group of teens in a very small confined classroom. I am thankful God determines our life timeline and not this crazy ‘rona.

New sleep routines took effect and oh boy what a wild ride. Night one was the roughest and both boys stayed up until 2:30am, excited to be in the same room as each other. As the week progressed and both boys learned the new routine things started to get a bit more predictable. I still can’t seem to get both of them fully asleep by midnight and I am up and down with one or the other about 4 times a night but at least we are finding our groove! We are ranging between 4-6 hours a night.

Levi has abandoned all napping unless I get him in the car seat, so by dinnertime he is pretty savage. But in his pre-maniac hours he has been so sweet. I have been blown away by the small gestures he does all on his own…

When he hears the shower stop he runs into the bathroom to hand me my towel. Seeing that tiny toddler hand shoot through the curtain with my towel is just the sweetest thing.

One morning he went eerily silent and when I went to find him he had gathered all the dirty diapers (5 had collected in the bathroom overnight) and threw them down the diaper chute to be a helper.

When I took out the bathroom trash, he got a new trash bag out all on his own and put it in the can. I mean, even Jake doesn’t do that one!

When he watches a funny video on my phone, he excitedly carries it over to Malachi so he can see it too.

He also picks out Malachi’s favorite toy and carries it over to him, setting it on his lap and holding Malachi’s hand to help him activate it.

Time and time again he surprises me with his sweet, inclusive heart. And Malachi just eats up the attention Levi gives him.

Malachi has been thoroughly enjoying all of the time we spent at home this week. I try to vary his seating throughout the day so he doesn’t get uncomfortable but this week he rubbed a giant pressure sore/rub burn on his arm while in the activity chair. Poor Malachi wasn’t able to tell me until it was too late.

He also got his new AFO braces this week but sadly they came plain white instead of the cool colors he was expecting. We decorated them with superhero stickers but Levi keeps peeling them off (shhh don’t tell Malachi- he will be crushed) so we have to find a better way to dress them up for him.

This weekend Jake and several of his friends tackled phase 2 of the therapy pool project. There is only a small window of time when Malachi can swim in the pool due to the sunlight. Even when the pool is mostly shaded the glare from the sun makes him close his eyes tight and he doesn’t enjoy the swim session as much as he does in low light. We have been working on building a roof over the pool and a deck around it for his wheelchair as he grows.

On Saturday the men worked for 10 long hours and made an incredible amount of progress! Early next week we should get the roof, a railing on the tall side, and some stairs. I will post updated photos next week!

This week I will have to take the boys to their first Chattanooga appointment since March. I am a little anxious as the hospital building we have to take them to also serves as a walk-in clinic for children. We have been working with Levi on wearing a mask to help prep him for his Cincinnati trip in a few weeks. He is up to tolerating a whole 10 seconds haha.

Speaking of Cincinnati, Levi’s breathing has been awfully loud this week. My imagination has been sparking about what they are going to find when they get in there. I would not be surprised if they have to do another supraglottoplasty (trim the epiglottis tissue away from the airway). But I am really hoping they will still be happy with what they see. I hooked him up to the pulse oximeter machine this week and his oxygen saturations are still staying in the safe range.

Levi is still working on jumping and it brings me so much joy and laughter to watch him. I captured it on film this week to share with you- hopefully it brings a smile to your face:

This morning in Sunday School with the youth I taught some lessons from the story of Gideon. One of the lessons that I shared with them was one that applies to all of us.

In Judges 7 Gideon prepares for war against the Midianites. As he gathers his large army God speaks and says “You have too many men.” Gideon sends a batch of soldiers home but still God speaks those same words. By the end of the pruning process Gideon is left with a mere 300 men.

Yes, there are explicit reasons in scripture why God did this. One of the biggest reasons was that He didn’t want the Israelites, who were already in a rebellious state of mind with God, to claim that it was by THEIR power that they defeated the Midianites.

But I like to find ways to apply scripture chunks like these to myself and the teens in present day. I am not in a state of rebellion with God or struggling with pride in moments of success. But as I munched on this scripture this week I reflected on times in my life when God has pruned my “comfortable safety net”. For Gideon those men represented power, confidence in battle, comfort. But those are the very things that God wanted to strip away.

Jeremiah 17:7 “But blessed is the one who trusts in the Lord, whose confidence is in Him.”

God doesn’t want us to work in the comfortable, He wants us to walk in faith. He wants us to approach impossible odds with a confidence in Him…not our own might.

I think about the many ways that God has painfully pruned things from my life that I saw as necessary, later to find out the many ways those “necessary” things were holding me back from a life dependent on Him. Pruning hurts, especially when you can’t see the purpose in the pain. But it is such a huge part of a walk with Christ!

There is always a cringe-worthy moment when God calls you to release something that are clinging to. But He sees the greater things that we can grasp if we only simply let go.

I also look at the 300 men that God left for Gideon- they were solid warriors, able to help him fulfill the task at hand. I think about my 300. I think about the friendships in the last two decades that have fallen away, friends that weren’t able to help carry the load that God knew He would bring to our family. But oh how I treasure my 300…those very special friends that pick up the swords and go to battle with me. God knows the size of the battles we are about to face and the very people we will need by our sides.

I want to type more but it is nearing midnight and Levi is wrecking the house around me in a tired rage. I guess that means it is time for us to begin the bedtime games.

Please pray for our family this week as we continue to settle into life. And continue those prayers of protection over our fragile boys.

Much love,

Leah

 

Our little Malachi is growing up! This week we have dealt with lots of meltdowns and had to work through some pretty big 7 year old emotions.

As we prepare for Jake going back to work tomorrow we are trying to reconfigure nighttime routines. On Monday I suggested to Malachi that maybe he could start sleeping in his big boy bedroom all by himself and he had a HUGE meltdown. He sleeps in the bed with me so I can reposition him throughout the night, but lately he has not been sleeping well and I am confident he will wake up Levi if he is sleeping in the same room with Malachi and I.

The thought of being in a different room hurt his feelings so we tabled the conversation and tried it again at the end of the week. We talked it up as the week went on, telling him what a big boy he would be and how it would be a good example to Levi. I also bribed him with ice cream, which in the end was the big winner.

Last night Malachi slept in his big boy bed for the first time in years! Now I barely slept, anxiously watching the monitor to make sure he would remain safe. With his tone and his seizures he has the ability to fling his body and I am terrified he will find a way to accidentally smother himself. The pillow is a new thing, but with his shunt I just feel like it is more comfortable than laying on the mattress.

He still isn’t sleeping very well, but managed to stay in his bed from 1:30-6! Tonight I will be attempting to get Levi into his bed after he falls asleep. Wish me luck. If I am in zombie mode for the next few weeks you will know why.

Malachi had several other meltdowns this week for various reasons. He has become very vocal if he feels like he isn’t being included and shed some tears this week when we visited with some friends. I have to say that this is one of the hardest things for me to manage as a special needs momma. It makes me so cautious to not take him into scenarios where he can’t do the things everyone else is doing. But there is also the balance of letting Levi do those things with friends. It is such a hard balance to find.

Both of the boys have sincerely missed hanging out with other children. We spent some time around cousins this week and seeing them light up reminded me of how important playing with other kids is.

His final high emotion moment was on Friday when we went to pick up his new AFOs (braces). He was supposed to get these at the beginning of July but as we were loading up to make the drive they called and asked to reschedule. The make-up appointment was Friday and he was so excited to get his new shoes. We ordered superhero stickers several weeks ago to decorate them with and he has already picked out which characters get to go on them.

We made it to the appointment only to find out that the gentlemen had accidentally left them in Chattanooga. Malachi’s excitement turned to disappointment when I told him he would have to wait a few more days to get his new shoes. He was vocally mad when we got home empty handed so we took a few stickers and put them on his current braces to give him something to be excited about. That worked like a charm and he was content with the gesture.

Although dealing with his emotional swings is new territory for us, it brings my momma heart so much pride. I love to see him be so opinionated and vocal. I love to watch him make the effort to have his voice be heard by others. When we were freshly home from the hospital seven years ago Malachi was almost too “go with the flow” and didn’t even cry a lot when painful things happened. Watching him form opinions has been so encouraging.

This week I have been working on paperwork to officially homeschool Malachi. Students with disabilities are annually given an allotment of funding to help the school system provide them with a free and appropriate public education. In the state of Tennessee there is a special program where students with disabilities can homeschool and receive the child’s allotted educational funding on debit cards to be used for curriculum, therapies, tutors, etc. We are working towards this route for the school year as in-person learning is not an option for him and remote learning wouldn’t meet his unique needs.

Levi has officially become a toddler tornado. Our house is a total wreck within 5 minutes of him being awake. His energy is fascinating to me.

And he has developed an obsession with his hats. Which is totally okay with me because he is a cutie. He has strong opinions on what he wears each day and is slowly morphing into a tiny control freak, but we are hoping that is just a phase.

Jake and I both have continued to be in a state of mourning this week as we count down the days until he returns to work. Life is so complicated but with both of us tackling it, it didn’t feel so bad. I am about to be abruptly reminded of how intense our days can be. Even thinking about it has been sending me down the rabbit hole towards some negative thoughts and attitudes. But my radar has been going off as I head those directions, reminding me that I have to stay focused on the good.

Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent think on these things. 

This week I will be taking a deep breath and repeating this verse over and over again, imprinting it onto my heart. Contentment is a choice. It is a path you have to choose to travel. My prayer is that God continues to grant me a heart of contentment no matter how complicated our life may get.

Philippians 4:12-13  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.

Please join us in prayer this week that we continue to draw strength from God instead of trying unsuccessfully to manufacture it ourselves. And please pray a hedge of protection over our family as Jake re-enters the world.

Much love,

Leah