Obviously this week’s update is going to be a pretty lopsided one with a whole lot of info about Levi, but know that sweet Malachi has been such a love bug since we came home. He has been snuggling me each time I pick him up, and having him show so much extra love has been just what my momma heart needed after this past week.

Aside from this surgery week each year, Malachi and I are never really apart. Traveling away from him brings anxieties, but Jake did an excellent job!

Before the trip we snuck to the bowling lanes at Malachi’s request for a quick game since his special trip was postponed. We even rented him bowling shoes- the little things that used to not matter to him now matter a WHOLE LOT now that little brother is in the picture. And we are happy to oblige!

Levi asked to ”hold” Malachi one final time before we left and I snapped a few pictures from their sweet encounter .

Levi and I hit the road early on Tuesday and drove straight to his first pre-op appointment with pulmonology. The doctor was very pleased with Levi’s progress and said ”He is remarkable!” He also explained again that Levi’s diagnosis of bilateral vocal cord paralysis with unknown cause (idiopathic) is “very, very rare. I only have two patients with his diagnosis and he is one of them.”

On that note, I was doing some researching late one night this week and pulled up some studies on the things we have done so far for treatment with Levi. I was reading an abstract from a case study on the first experimental procedure he had done and BOOM I was able to spot Levi (nameless of course) from the study results. Reading these reminds me of blessed we were to be able to work with the surgeons in Cincinnati to find a solution. We are “the one”!

We spent our time in between appointments this week trying to find things to do with a very busy four year old that 1) aren’t germy environments and 2) not crowded places. That proved to be a hard task but we managed.

We are originally from Cincinnati and still have family all over the area, so we spent a lot of time visiting family and stayed with Jake’s parents for the week.

There are several Cincinnati restaurants we try to hit every time we travel north. Last year Levi was just learning how to eat and was still primarily g-tube dependent. While he is still dependent on it for 700 calories each night, he is eating all daytime meals by mouth. The difference between last year and this one is shocking!

We spent time with two of Levi’s great grandmas and one of them lives in a very large assisted living facility. She was so excited to show Levi off to her friends so we spent several hours there with her; as we headed down to meet them Levi asked ”Mommy, will grandma’s friends be dressed modest?” I told him I sure hoped so! His vocabulary these days is growing.

He also asked me at one point: ”Mom, is grandma really old? We need some new grandmas.”

All week long we dealt with some pretty big emotions about the looming surgery. When the petting zoo made him put on a paper bracelet it triggered some anxiety and behavior. We talked about surgery every day and night, going step by step through the process and what to expect. But he still continued to cry himself to sleep with anxiousness each night.

The night before surgery my heart ached when he said in such a contemplative way: ”Mom, I’m just a little bit different.” I wish their was a training on how to navigate these conversations with a medically complex child. I feel so ill equipped.

Levi’s check-in for surgery was Friday morning at 9:30. Little known fact about surgery scheduling- they often try to start with the youngest patients since you have to go NPO (no food or drinks) the night before. The older he gets the later that check in time will become.

He fought me but finally put on his surgery day shirt and we headed out.

Levi’s regular ENT surgeon was sick this week and Dr. Rutter was doing her surgeries for her. Rutter is the doctor that helped develop Levi’s experimental procedures and the one I talked to prior to his transport from Chattanooga. He was our first point of contact and gave us so much hope!

I remember vividly being in Levi’s NICU room and his surgeon coming in to tell us she thought we had officially exhausted all other options aside from the trach. She brought the consent forms in for his trach surgery, and after nearly 5 months I felt like I had lost our battle. I remember pulling out my pen, and at the last second asking her, ”I don’t mean to be offensive in any way at all, but would it be possible to talk to Rutter one more time?” She was so, so kind and brought Rutter in later that day. I looked him in the eye and said, ”I need you to tell me there is nothing else we can do for Levi except for the trach.”

And Rutter took a deep breath and said, ”Well. There is one more thing we can try.” And he proceeded to tell me about the rib graft surgery. It was a very complicated surgery that required four surgeons but he said he was willing to head it up, primarily because he knew the complexity of our lives with Malachi and wanted to find a way to make our world a bit easier.

We get to see him every now and then when we travel to Cincinnati, but I was so excited to get his report on Levi’s progress.

We brought some presents for Levi to open periodically throughout the pre-op wait, and it made the time fly by.

We had considered doing ”silly juice” this year to help him transition to the operating room a bit easier, but he has a history of it causing respiratory distress and I just couldn’t decide if it was worth the risk. When he was younger he was on 1/2 liter of oxygen and had reacted to a dose of Versed (silly juice) that required him to be put on 6 liters of oxygen and almost reintubated. He was handling the wait so well so I decided to pass on the silly juice…but definitely regret that one.

They let me walk him back to the operating room, Levi screaming the entire way. He has never handled this part well but has always been too confused to really process quickly. This year he knew what was coming and the hand off was an excruciating one. I passed him on to the surgery staff, complete strangers, then tried to leave the room as quickly as possible for Levi’s sake. But his eyes were burning through me, watching my every move. He was looking to me frantically for comfort and assurance and I had to walk away.

I am not exactly sure what the long term effects are from these repeated encounters with him, but I worry so much that I am creating a trauma in him that will cause long term problems in our relationship. He stayed very mad at me for about 24 hours after surgery, and I am absolutely sure it is due to the trust break we experienced on surgery day.

But back to the update…

Surgery went incredibly fast and did not require any cutting, stretching, or interventions. They lavaged his lungs and sent off cultures to make sure he isn’t aspirating his food and drink. And they checked his airway to make sure no tissue had overgrown and had potential to cause a loss of airflow.

The surgeons were both very pleased with what they saw. Here are some of the main takeaways from the surgery:

-Levi’s cords are still paralyzed. This is now considered a permanent, lifelong condition and that changes our long term plans a bit. He will be followed surgically on an annual basis until he stops growing (around the age of 18) to make sure no trimming is needed and he is still safe. If his stridor continues to worsen or he starts snoring that will be a pretty good indication that we need to take him back in for more interventions.

-Levi’s trachea is still floppy (called tracheomalacia) but still considered safe. His lungs look stronger than last year. And he didn’t visually see signs of aspiration.

-Levi’s voice quality is still a marvel. I asked if he would maintain his pitch and inflections and he said that he should until puberty hits. But he also said that some boys have better voice quality after puberty, so that is exciting to hear.

They brought me back to the recovery unit (PACU) early so I could do a quick g-tube change while he was still under anesthesia. He was still intubated at this point and being bagged (manually breathing for him) but I have seen these things dozens of times so it didn’t phase me too much. However, when Levi finally woke up he went from no movement to swinging and kicking, dislodging the bag from the tube in his mouth. It was a pretty dramatic 10 seconds as we tried to get the remaining pieces out of his mouth. He ended up kicking me in the eye socket pretty hard and punched the nurse.

Truthfully this was the fastest surgery I have ever done with the boys and we were back on the road after just 2.5 hours. We waited until the next day to return home so I could catch up on a few hours of sleep that evening. The anxiety of the week kept me up most nights and when the adrenaline wears off after the surgery I always crash pretty hard.

I have to be really honest with you and share that this week has been one of the most emotionally exhausting ones I have been through in awhile. The anxiety in Levi leading up to surgery was the worst it has ever been. The anxiety in me leading up to surgery was the worst it has ever been. It affected me in physical ways.

But the scene from the operating room continues to play when I close my eyes at night. His frantic eyes watching me, trying to process why I was leaving him in this scary situation with strangers. And why I was doing it with a fake smile plastered on my face and confident words but uncertainty dancing in my own eyes.

Later that night I pulled Levi close to me and asked him if we could talk about when mommy had to leave him. He immediately burst into tears, sobbing as I tried to process that moment with him and explain why I had to leave him. Explaining the benefits of a procedure to a four year old is simply not possible. So I explained how hard that moment was for me too, and how I didn’t really want to leave him there but I had to. He cried until he fell asleep and as I laid in that bed with him I felt my heart getting so incredibly frustrated with God.

Yes, we can do hard things. But why God? Why do we keep getting called to the hard things? Why do I keep getting called to the hard things? When will the hard things stop? I have lived a lifetime of hard things and I am so, so weary.

And in that moment God gave me the gift of His eyes. I saw myself in Levi surrounded by strangers in that operating room. Wondering why this person that I trust so much keeps placing me into scary situations and seemingly stepping away. Wondering why He is expressing so much confidence as He watches me from afar. Much like a four year old, I have a hard time seeing beyond the discomfort of the now.

But there is progress, healing, and wonderful reports that can come from those operating rooms. Those operating room moments in our lives are the very places that testimonies get written, grow legs, and come to life.

God carries us to the mountaintops and God carries us to the valleys. He is never apart from our journey. But do we really trust Him? Because if we trust Him we have to believe that He is doing something magnificent within us each time we are called to the hard.

I pulled up a blog entry from 2018 when Levi had his rib graft placed. We were still unsure whether it was a success, which as you know we later found out was successful at avoiding the trach.

As I read it again this week I was convicted in so many ways by the Spirit. I thought tonight instead of an original devotional thought I would instead share this one with you….

March 11, 2018- Buckets of Water

This week I was reminded of the miracle God performed through Elijah on Mount Caramel from 1 Kings 18. The prophets of Baal and Elijah had a contest. They would each prepare a sacrifice and pray to their god(s). The god who would answer with fire on the sacrifice was the one true God.

The men who worshiped Baal went first. They prayed, chanted, cut themselves trying to get the attention of their false god. No fire came.

When it was Elijah’s turn he had the men pour four large jars of water on the sacrifice and the wood underneath it. Then he had them fill up the jars and do it a second time. Then he had them do it a third.

Here is what happened:

³⁶ At the time of sacrifice, the prophet Elijah stepped forward and prayed: “Lord, the God of Abraham, Isaac and Israel, let it be knowntoday that you are God in Israel and that I am your servant and have done all these things at your command. ³⁷ Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

³⁸ Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.

³⁹ When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”

As I read this story I couldn’t help but marvel at the ways of God. He could have easily sent fire down to burn up the sacrifice right away. But He took a situation that- by itself- would have been miraculous and He made it even more magnificent.

Each bucket of water tossed on that bull made it more and more unlikely that the fire would consume it. Each bucket created more doubt in the eyes of the unbelievers. Each bucket gave them confidence that the miracle would never happen.

And it was after He drew the attention of a crowd of unbelieving, doubting men that He sent his power to do the unthinkable.

As I look at our life I can’t help but feel that these trials we are going through now are the buckets of water. We were drenched with Malachi’s untimely birth. We are sopping wet with his physical limitations and hurdles in life. Then more rounds of the buckets came with Levi’s birth. Each time we are doused with water our miracles seem less likely to ever take place.

But oh how I long for the day that God decides it is time for His power to be made known through the miracles He performs in my boys. And may He choose to do so in such a way that it brings the unbelieving to their knees in worship to Him.

I believe with all of my heart that Levi will verbally share with others the goodness of our God. And to see Satan trying to steal his voice affirms that in my heart even more.

Please continue to pray over our family as we process the disappointment that creeps in. We didn’t get our big miracle, but God has been so gracious to our family and given us so many other miracles along the way. Pray that we are able to cling to those moments as we try to press on past the disappointments. And pray for wisdom for me in dealing with parenting these amazing children. Being a mom is hard. Being a medical mom is a whole new level of hard. And this week I am feeling it in my bones.

Much love,

Leah

The theme of the week here has been flexibility. Tuesday afternoon we received a phone call that one of the two surgeons we planned to meet with at Vanderbilt on Tuesday had been called into several trauma surgeries and they needed to re-schedule our appointments. That trip will now take place late August.

I had spent most of the week talking this trip up with Malachi, so having to break the news to him was hard. He was disappointed, but we worked through those emotions focusing on the excitement of getting to do that trip in just a few short weeks.

But add onto that disappointment the frequent chatter of preparing for Levi’s week long trip to Cincinnati. Bad timing for an already disappointed 9 year old and a anxiety ridden 4 year old that requires LOTS of conversations about his upcoming trip.

Levi and I were originally planning to leave for Cincinnati today but have slid our timeline a bit to drive straight from Tennessee to the first pre-op visit on Tuesday. We will meet with the pulmonologist that will be in the operating room on Friday, and usually at this appointment they check for vocal cord movement. He has to be awake for this portion to truly test movement without anesthesia, and it involves sending a camera down his nose while I bear hug him tightly. It is a miserable appointment, but one that just has to be done.

The other surgeons involved have waived their pre-op appointments and plan to just meet with us right before the operating room on surgery day. Which is wonderful news as getting Levi back into the hopsital after his miserable camera experience is always a challenge.

Surgery day is Friday. We always sign off for ”interventions as needed” as they never know what will need to be trimmed (suppraglottoplasty), dilated (balloon dilation), or expanded until they are in there. His procedure is called a microlaryngoscopy and bronchoscopy (ML&B) and doesn’t take very long to do.

After the procedure is finished I get called into the conference room twice- one time to speak with the pulmonologist (lung doc) and the other to speak with the ENT surgeon. The lung doctor will examine his lungs and trachea, testing the fluid and cleaning his lungs to see if there is any sign of aspiration of food, drinks, or saliva. The ENT surgeon will be looking at the anatomy above the trachea, examining the vocal cords and seeing how open his airway is. Sometimes Levi’s epiglottis grows up over the airway and she will do some trimming as needed.

As I have mentioned before, if his vocal cords are still paralyzed at this time, statistically they will never wake up and regain function.

Alright, so how am I feeling leading into this appointment? The answer is complicated.

I would be SHOCKED if they told me his cords were functioning. So no big breakdown of emotions if they tell me they are paralyzed for life. When Levi was a newborn we pursued treatment as though his cords would never wake up, doing several experimental procedures to try to find a trach free route. Had we not gone that route we would be doing some pretty massive surgeries right now, aggressively trying to get the trach out.

I legitimately hate surgeries. I recognize the need, I recognize the blessing that they are…but I still hate them. I hate handing off my children. I hate seeing them under anesthesia. I hate the wait leading up to the operating room. I hate seeing the date and the word ”surgery” on my calendar.

Between both boys I think we are at 45 surgeries? Each surgery carries a host of memories, emotions, and anxieties that a momma can’t easily forget. I will prep for the day with my usual routine…

-Waterproof mascara for the surprise emotions. The ones that gets me EVERY time is the walk from the operating room to the waiting room. I am typically pushing an empty stroller or wheelchair and it just feels so unnatural. Levi is usually crying out for me and I have to turn my back and walk away. Ugh.

-Total random side note: I always try to shower and clean up for surgery days; in the past they have taken a bad turn and we end up in the ICU for several days where showers are rare. We now prepare for the worst, but I don’t anticipate any surprises like these. I also try to dress like an adult rather than comfy clothing because we have noticed it affects the way the staff (nurses, anesthesiologists, surgeon) talks to you. Call me crazy but I fully believe this makes a difference.

-A dark colored shirt in case there is post op bleeding from the boys. The chances of me getting stuck in that shirt for several days is there and hiding the blood spots helps me cope. I also try to wear something with a Bible verse on it to remind me that I am a representative of Him, even on my hard days. I try to think about the others in the waiting room, as each of us are facing our own hard battles in that room, and wear something that might spark their faith.

-A book that I will pretend to read when he is in surgery even though we all know I won’t be able to focus. Having something to stare at in that waiting room is a must. In smaller hospitals they let you wait in a private room, but in large ones like these you are in a room with at least 100 other parents. My people watching nature torments me as I absorb the anxiety and emotions swirling in that room.

-A notebook to take notes during the surgeon talks after and list of questions for the surgeons. It is always a burst of information and if I don’t write it I don’t remember it. Plus my mind immediately drifts to the thought that he is in recovery and the sooner I finish these meetings the sooner they may call me back to be with him. I tend to accidentally forget important questions I mean to ask.

-Freshly cut fingernails so I can’t self mutilate my cuticles when my anxiety kicks in. And a nasty tasting chapstick so I don’t pick at my lips while I wait anxiously for them to call me back.

-A bottle of water for after surgery. I typically dehydrate myself so I don’t require the restroom while I wait. I don’t ever want to be out of the room when they call my name. That is legitimately one of my nightmares, and is fueled by mistakes I made early on in Malachi’s surgery days.

-My hospital backpack. It is large enough to hold 2-3 days worth of hospital supplies in case of a surprise overnight stay. I also pack another bag for the car with emergency supplies if we get admitted.

I have prepped some surgery day surprises for Levi to help distract him a bit. I also have a ”surgery day” shirt for him this year to try to help him with the anticipation of the day. He has been anxiously asking all week long, so I have told him ”when I put this shirt on you, you will know that it is surgery day.” His shirt says: I can do hard things. Which is the phrase we repeat over and over leading up to the day.

We have also added a Bible verse into the mix when he starts to get anxious thinking about the day.

Joshua 1:9 ”Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

In the days in between pre-op appointments and surgery day we will be finding some fun things to do and visiting with family in the Cincinnati area. My goal is for the fun memories to outweigh the bad ones, although I am afraid I am in a losing battle with that one.

Jake and Malachi will be holding down the fort here in Tennessee, and I have been hugging him extra tightly. Malachi and I have such a unique bond and being away from him feels so unnatural. This is the only time all year that he and I are apart.

I have been spending a lot of time in the Word this week, trying desperately to prepare myself for the week to come. As many of you know, Daniel 3:18 has become a “life motto” of sorts, talking about how God is able to deliver us from the fiery furnace, but if He chooses not to then He is still good.

This week I spent some time reading through that chapter again and my eyes focused on a new chunk of verses. The more I have read them this week the more I have adopted them as my prayer for the week.

Daniel 3:26-27 ”…Then Shadrach, Meshach, and Abednego came out of the midst of the fire. The satraps, the prefects, the governors and the king’s high officials gathered around and saw in regard to these men that the fire had no effect on the bodies of these men nor was the hair of their head singed, nor were their trousers damaged, nor had the smell of fire even come upon them.”

Time and time again our family has faced this fiery furnace, and each time God calls us to walk back into the flames. I choose to keep believing fully that our call into the furnace isn’t always meant for us, but rather it is often for the outsiders looking into our lives. Like King Nebuchadnezzar in Daniel 3, from afar he was able to see the presence of God with the men in the fire, and I pray that the same is said by onlookers in our lives.

But these last few times I have entered that furnace I can’t help but look down and find all of the lasting marks, the smell of the smoke lingering in my nostrils and coming back to mind each time I think about re-entering the flames and filling me with a sense of dread.

I have slowly, and unknowingly, made the time in the furnace all about me instead of remembering that God is telling a greater story of deliverance.

My prayer this week is that I can keep my eyes focused on Him. I am praying that both Levi and I can walk out of the furnace this week with the ability to focus on God and His goodness rather than the marks and memories of the flames. That not even the smell of fire would come upon us.

Would you join us in that prayer?

Please also join us in praying for safe and uneventful travels, and for protection of Jake and Malachi in Tennessee.

Thank you for always giving me an ear to listen to my ramblings each week. We appreciate our community of support so much more than I can relay.

Much love,

Leah

What a wonderful, exhausting, and powerful week we just had! On Tuesday we loaded up our teenagers and took them to camp for the week. This is our tenth year doing camp with the youth, and we have gone from 17 campers to 50 (56 if you count my crew and some extra help)!

There is always an incredible amount of prep work required to pull this off every year, and we spend so much time in prayer leading up to camp over these young adults. When we actually get to camp we get to enjoy watching God do His thing, and being present for them as they grow in Christ.

Flashback to the first year I took both kids to camp…

Levi was on oxygen, feeds, and a pulse ox 24 hours a day and we didn’t have a portable oxygen concentrator so I had to haul dozens of oxygen tanks with us for the week in addition to the other supplies for both boys. I was solo that year, living in a hotel room for the week and on the final night we came back to the hotel at midnight to find a giant rat turd on the bed that was most definitely not there when we left for that day. All I could picture was a rat on Malachi in the middle of the night and him not being able to tell me or push it off, so I packed up allllll the tanks, equipment, boys, and checked into another hotel around 4am. That was a rough year.

Since that horrific experience, I have had some wonderful friends that feel led to take time off each year and come along to help me with the boys. We rent an AirBNB and travel back and forth each day, and the boys genuinely look forward to camp with the big kids each year. It is our summer vacation (as unconventional as it may be) and they love it.

God moved in some pretty amazing ways throughout the week and we left feeling so encouraged about the preparation God is doing with these teens to do some big things for the Kingdom of God. I want to gush right now, giving you examples, but I also feel I need to protect the confidentiality of our teens!

Camp days are like no other, most nights staying up with the teens until 2am. The real winners are the lovely friends that came and helped with the boys, tolerating my late nights with the teens and running nightly routines and meds with the boys at the rental.

We came home yesterday afternoon and we have been taking turns napping all day. I was supposed to leave with Malachi for Vanderbilt on Tuesday but we are going to slide that plan a bit and I will head out Wednesday morning, drive there just in time for his appointments, then spend Wednesday evening doing a few fun things to jazz up his ”trip with mom”. We will stay the night in a hotel on Wednesday because I am not confident I have the mental clarity right now to drive back the same day; that would be nearly 7 hours of driving in one day on limited sleep and lots of stops along the way for Malachi’s needs.

Malachi will be getting x-rays and we will be talking with the spinal surgeon about his new degree of scoliosis and if we need to intervene (surgery) anytime soon. Which we are praying against! And then we will meet with his orthopedic surgeon to talk about his foot positioning and if more tendon release surgeries are needed. His cerebral palsy manifests in his ankles by pulling the tendons extremely tight- tight enough to bring his foot up and out.

Malachi wears AFO braces to help keep them in position but those can only help maintain positioning. Sometimes surgical intervention is needed. Malachi has already had several corrective surgeries on his feet and ankles, several months of serial castings, and pins placed through his foot bones to reform them. But his brain continues to send mixed signals creating more damage.

I am not expecting to hear any new or shocking information at these appointments. There is a pretty good chance they will mention surgery for the feet, and that isn’t an earth shattering thing. If the spinal surgeon mentions surgery being needed, which I don’t expect based on last year’s degree of curvature, I will most definitely have trouble accepting that (meaning I will cry my eyes out in his office). Spine surgeries are rough on medically complex children.

Malachi and I will come home Thursday. And a week from today I will be packing up Levi and he and I will head to Cincinnati. His first pre-op is next Monday and his surgery will be Friday morning. We don’t know what they will have to do in surgery until they get in there and look at his airway, but they usually keep it an outpatient surgery and have us come back in a few months if a larger, inpatient surgery is needed.

Let the road trips begin! We will divide and conquer for the rest of the summer trips, Jake staying home with one and me traveling with the other. I am not looking forward to any of these trips, but also recognize that they have to be done. So we just repeat ”We can do hard things” over and over again until we start to believe it.

Last night I sat down to start planning the details of Nashville with Malachi. I try to find something extra special to do with him each year, and as I scrolled through dozens of options every single one of them was not feasible for me to do with him. I was left with the same few things we always do, which I am sure he wouldn’t mind. But my momma heart wants so badly to give him new, age appropriate experiences. The older he gets, the more limited we are as I can’t carry him safely like I used to.

As I scrolled through all of these amazing activities I could feel emotions welling up inside of me, eventually spilling out of my eyes as I mourned for Malachi. He is such a kind-hearted, sweet sweet boy. He has the mind of a 9 year old and is so aware when he isn’t able to do the fun things other children are doing. I wish our world had so many more options that included all abilities.

If you are a Nashville fan and can think of any ideas we may be missing send me a message! Our usuals are: Rainforest Cafe, the zoo, Build a Bear, movies, arcade (Dave & Busters or Chuck-e-cheese).

Malachi is SO EXCITED about this trip, laughing uncontrollably every time we talk about it. And Levi is crying his eyes out every time we talk about it. The jealousy is thick in our home right now.

The Lord led me to a verse last week that has really been playing in my mind.

Isaiah 29:19 ”The afflicted also will increase their gladness in the Lord…”

As I have read over these words and absorbed them this week they have become a new prayer. Affliction is a very real and present thing in our family, and it has interwoven itself into the fabric of our testimony. We have prayed against afflictions, yet they still remain.

God has chosen our family to bear the label of ”affliction”. It is one that he could easily remove in an instant, so the fact that it remains is proof enough that it is meant to be a major part of our story.

So while God continues to author each chapter in that story, my prayer is that we will be able to increase our gladness in the Lord while we wait patiently for Him to work.

Yes, we bear the label of affliction. But there are so many other beautiful post it notes on our board that would have never been written without affliction also being present.

Please be in prayer for our family over the next two weeks. Pray for good reports, safe travels, and memorable moments of joy!

Much love,

Leah

I have been slacking a bit in my blog routine lately; when I have sat down the last two weeks to write I have felt God’s leading to close the screen and try again the next morning. He knows me better than I know myself so I have been trying to be obedient and assume God’s timing has a purpose.

Levi is growing like a weed and moving fast into big brother’s hand me downs. There are still ”firsts” for us as parents, even though Levi is our second child. We never had a reason to really buy shoes for Malachi so we don’t have hand me downs in that category. I had to take Levi for some bigger shoes this week and his wide-eyed wonderment at all of the options was a really precious parenting moment. Levi wears braces inside of his shoes so we have to be pretty picky to make sure his braces will also fit, but he was so excited about his fancy new shoes!

Our summer has continued to go so incredibly well with lots of family time. We have been doing lots of planned and impromptu play dates with friends here at the house, and Malachi and Levi have spent hours this week in the pool. Malachi keeps beating his record (at his request) and will often spend over 2.5 hours swimming. It is hands down his favorite activity right now.

The FDA recently put out a statement regarding neck rings like the one he uses to swim due to some children somehow slipping through. Malachi is always supervised when he uses his so for now we still feel comfortable with continuing.

It is very hard to have a social life with medically complex children, and it is something I am more than happy to give up in this season that we are in. However, God has been very gracious to us in many ways, bringing such kind and loving people into our world.

At a neurosurgery appointment 5 years ago we ran into another medically complex family and started a conversation. They have two amazing boys, and one of them has many of the same diagnoses as Malachi. We still get together several times a year and text often, and this week they came to our home for a play date.

There is something refreshing about being around other medical mommas. It is inspiring in a way to be able to watch the unique-to-them but similar to us routines and strategies that we use to help provide normalcy for our children. To see others doing life well is always an encouragement to me and challenges me to keep pressing on.

Here is a photo of Malachi and Thatcher from 2016

And one of them together this week!

While we have been thoroughly enjoying summer, this week the ominous wave hit me that we are about to enter our season of medical traveling. Lots of psychological warfare is about to begin as I manage a lot of PTSD from medical facilities and specialists. Anticipatory dread keeps creeping in, keeping me from being as present as I would like to be. I have to keep refocusing and trying hard to enjoy the moment.

Tomorrow is a big day as we head to youth camp with our youth group. We will have 50 at camp this year, and then 6 total at a house off-site with me. This is the largest group we have ever taken to camp and the devil has most definitely been trying to slow us down. Just this weekend two of the three buses we were using to transport kids broke down and we had to scramble to find replacements.

Whenever the devil starts his tricks I can only assume it is because something really great is about to happen at camp that will impact the Kingdom of God in a mighty way. So as stressful as things have been I am really excited to watch Him work.

This is our family vacation each year, and something both of the boys have been giddy about! We require a kitchen, sink, and refrigerator for medical needs when we travel so we rent a house close to camp. Jake stays on site with the teens and a few other chaperones and I travel back and forth each day with the kids and some great friends that come to help with the boys.

When we return next week I will have a few days for laundry and unpacking, then Malachi and I will head to Nashville to meet with his orthopedic and spine surgeons. We will do x-rays and examine his foot positioning to see if it is time for another surgery. Then the next week I will head to Cincinnati with Levi for his week of appointments and surgery.

Malachi is very aware that Levi gets a whole week in Ohio with just mom, so we typically try to give him a special trip with mom of his very own. I will book a hotel room for he and I and we will find something fun to do around the hospital. Last year we did the Rainforest Cafe and Build a Bear.

I was reading through James 4 this week and came across this verse:

James 4:7

“Submit therefore to God. Resist the devil and he will flee from you.”

There are so many truths in this verse, but the one that immediately hit my heart was the very first word: submit.

So many times we try to resist the devil through our own power. But it isn’t our power that overcomes…it is the power of God through us when we submit to Him.

This week as I have wrestled with the doom and gloom that is to come over the next month I have found myself trying to fight those thoughts on my own. And it truthfully just isn’t possible. I can distract myself from them, but the power to remove them from my heart and mind is beyond my capabilities.

So this week I am working on submitting to God. Acknowledging to Him verbally and from deep within my soul that I am weak and apart from Him I can do nothing (John 15:5). I am asking that He replaces my anticipatory grief with His peace.

And I am trusting that He will do just that!

Please be in prayer for our family as we enter a week of focused ministry. And please be in prayer for the weeks of medical traveling that will follow.

May God reveal Himself to you this week!

Leah