The Carroll family is getting some cabin fever! Our schedule has slowed down pretty significantly in the evenings so we have been enjoying lots of family time together, and some good old fashioned competition like the pre-kids days. Bonus points for you if you can figure out what game we are playing.

On Friday morning Malachi had a pretty big seizure on the way to school. I was able to get him back to a safe level and continued with the plan to drop him off for a few hours. When I picked him back up his teacher told me he had another bigger seizure while at school. By the time I got him home he was running a temperature and had his “sick eyes”.

We have been fever fighting all weekend and cautiously watching him to see if it turns into anything else, but so far he doesn’t have any other symptoms. Since both of the boys end up in the bedroom at the same time at some point in the night, Malachi and I have been camping out in the living room and letting Jake and Levi have the bedroom. When Malachi is sick his sleep patterns and seizures get turned upside-down and tends to wake up Levi.

His fever broke in the middle of the night last night and he has perked up a bit today. But Levi definitely isn’t used to being cooped up in the house this long. He has been getting into lots and lots of mischief, like pouring a pitcher of milk on his head tonight. He has also been super helpful lately and likes to drop everything into the sink…everything. He has also been swirling this broom around like a chinese fighting stick, relentlessly knocking everything and everyone in his path.

Jake and I have been trying to teach Levi about the potty in hopes it will make potty training easier in the future. We explain the process each time we go to the restroom and at one point I said “We say bye bye to the pee.” as I flushed the toilet. Apparently that was the wrong wording because he has now decided that the toilet is his friend. He sneaks in there and has conversations with the toilet, bending down really close to the seat to make sure the toilet can hear him. Last week I even saw him kiss the cover like it was his long lost friend. AHHHHH.

While Levi’s “toddlerness” is definitely challenging my level of patience, there are so many fun things about this phase that he is in. He makes us laugh continually! He is also so conscientious about including Malachi in everything that he does.

On Thursday I dropped Malachi off at school and met another medical mama in Chattanooga. Our friendship truly is a God created one as she and her baby were also transferred from Chattanooga to Cincinnati for an airway issue. We met for the first time this past summer when we were in Cincinnati for Levi’s surgery. It is always so refreshing to be around other moms who understand our world.

We met at a mall and I let Levi play in the small play area, which was a serious challenge for my germaphobe issues. I prayed a bubble of protection over him before I let him unleash his energy. And oh boy, did he love it! He loved the climbing and sliding, but he loved the interaction with the other kids the most. He is incredibly friendly and loves to follow around the other kids and talk to them.

After he played a bit I sanitized every safe part of his body and stripped him down before putting him in the car. And of course he got a hot bath as soon as we got home!

Malachi has been doing exceptionally well on his horse lately and really making some progress with how he is using his body to functionally do things. When the temp drops too low we have to stop riding so we have been grateful for the tolerable temps and the forward progress.

Jake has the week off and we are looking forward to tackling some house projects and family time. Some of our family will be coming in from Ohio to visit and Saturday will be Malachi’s big Christmas tree lighting ceremony.

I have had so many heavy things on my heart lately…things that wake me up at night and require instant prayers. It is so hard to see so many in our world suffering with big things. It is so easy to see the suffering and allow the enormity of it to overwhelm you without letting it prod you into action.

I look at the beautiful and blessed life that we have been given and I am so challenged lately to not allow myself to fall into the consumerism that plagues our world. It is so easy to find comfort in accumulated things, but that feeling is fleeting when it is rooted into possessions.

A few months ago Jake and some of the men from our church connected with a group of homeless people in Chattanooga that were living in a tent community together. One of the women at our church drove by their small community on her way to work and her heart was pricked so she and her husband asked that we find a way to minister to them.

Each of them had different factors that led to their situation…

One was an elementary school teacher that had lost her job.

One was a man that was diagnosed with terminal cancer and had chosen to not seek treatment. Jake is convinced this man won’t survive the winter.

Many of them told Jake they were one paycheck away from being able to get a roof back over their heads and had just had several catastrophic events happen that led them to homelessness. Their similar situations had bonded this group together and they looked out for each other.

Over the last several months we have been gathering requested supplies for these families…they never once asked us for money but instead asked for boots, warm socks, winter coats, tents, bottled water, propane for their stoves. We were planning a big Thanksgiving meal for them but when we went to work out the details we found out that the police had made them all leave the premises.

We will likely never see these people again. But sometimes all we are called to do is plant the seed. We were able to share the gospel with them several times and plant the seed of Jesus into their hearts. Now we have to trust that God will water that seed and continue to cause it to grow.

When you get to witness some of the suffering of our world firsthand and speak to the ones suffering your perspective changes. You can’t unsee and you can’t ignore.

My heart has also been broken for families like ours with medical children. I look at our journey, and as rough and unpredictable as each of our children have been we have been surrounded by a network of praying and supportive people in our world. There are so many medical families that don’t have that same support.

The NICU world is so full of hurt and hopelessness. There is so much darkness and so much pain.

That being said, I have felt so led to do something for ICU moms on Christmas. I have been praying about the project and asking God for guidance and for weeks I have been hearing crickets. I have learned over the years that when I try to manufacture projects like these the kingdom impact is small, but when I allow God to do the planning the impact is bigger than I could even imagine!

When I feel called towards something but don’t get the details from God right away I tend to second guess the calling. But this week I was teaching the youth about the faith of Abraham and how he walked up the mountain with Isaac, determined to walk in faith and obedience…something I am not always good at.

So even though I didn’t have a direction for my NICU project I made the decision yesterday to walk in obedience and have faith that God would tell me what needs to be done. Faith requires action. So we gathered up several items around the house that we have no need for and sold them to get the funds started for the project.

Then last night around 4am God gave me the game plan! I guess he was looking for by obedient heart to trump my need for micro-managing. Give me another week to sort out details and logistics but I would love to give you all the opportunity to jump in on this one!

As I went through our possessions to find items to sell I was almost disgusted at how many unnecessary things we have. I thought about our homeless friends and the looks on their faces if they were to see how much useless stuff we cling to. I looked at all of our medical equipment and toys and thought about how many medical moms would be thrilled to even get a single item like these.

It led me to really process how I want my children to be raised. I don’t want them focused on acquiring more things. I don’t want them to put their identity into objects. But in order to do that in today’s world I am going to have to be very intentional.

I saw this idea today and instantly fell in love with it. I figured I would share it on here in case any other moms wanted to try it out.

A few days before Christmas these boxes go under the tree and each child fills it with quality toys they would like to pass on to someone else. I am also really giving thought to finding a service project for our family to do each Christmas day. I think it is so important that we intentionally model and teach our children to have the heart of Christ and look for ways to be different than the world, like the Bible calls us to do. What’s more different than the world then taking a day focused on “me me me” and finding ways to focus it on others.

I feel like I am all over the map tonight. I know I blame sleep deprivation a lot so let’s go with that excuse again haha.

I can tell you all this…God is working on my heart in many ways. I feel it. He is challenging me, calling me, and instilling a new healthy empathy within me.

I am so grateful that God is allowing my heart to break for others. It is so easy for me to get caught up in my own difficult world and use it as an excuse to close my eyes to those suffering around me. May we never become so established in this world that we don’t seek to bring light into the dark places.

Happy Thanksgiving y’all!

Leah

 

 

Levi is officially two years old! Take a few seconds to listen to him tell you himself:

We can’t believe how much he has changed in just one year- it is almost unbelievable.

It seems silly to celebrate a two year old’s birthday seeing as he doesn’t even know what a birthday is, but I did want to make his day extra special with the hopes it would distract me from strolling down memory lane and allowing the negative emotions surrounding his birth to come back. I made it the whole day without shedding a tear which is truly a praise report.

Levi must have been extra pumped about his big day and woke up wide eyed at 3am. He was loud enough that soon after he also woke up Malachi. They were both playing and having a grand ol’ time up until abut 6:30 when I made them both lay back down.

For dinner we went out to get Levi some birthday queso, one of his favorite treats. Then I took him into Target and let him pick out a new stuffed animal, a job he took very seriously. He settled on a fluffy elephant and hasn’t let it go since.

We had a few small gifts for him.

Bubbles

A microphone

Refrigerator magnets to try to distract him from the actual fridge. And a fine motor porcupine to help with those skills.

We are pretty low key about birthdays and holidays around here.

Both of the boys did so wonderful at their therapy sessions this week!

We made the decision to keep Malachi home from school this week. The flu and strep has been floating around his school and if it ever hits his classroom they let me know and allow us to make a decision on sending him. So both boys got to tag along to work with mommy this week. Levi is getting to be a little too much to handle in the office, coming up with ways to entertain himself when he is bored. I took this photo very quickly for Jake so he could see the antics Levi has been up to lately. I know I shared a similar one with you all last week, but his confidence level is continuing to grow.

Malachi has always been into watching (well, listening to) cartoons but recently he has been starting to show interest in movies and plot lines. I brought our portable DVD player to work with me so he could try out a few movies- Peter Pan and Mary Poppins. The more singing the better, and he has really been actively listening to them!

He is such an amazingly neat kid. I wish each of you could get the chance to know him and see how awesome he is. This week he has been VERY into picking out what he wears each day. I got him some much needed new shirts in his size and most of them have dinosaurs doing various things on them. He loves when I give him options to choose from.

His seizures are still being well controlled with the new medication change, and he is only having 1-2 medium ones each day! Sleep is still pretty limited- he is going to bed around midnight each night and waking up at 4:14am. I am sometimes able to get him back to sleep around 6:30 for an hour or two until the wild Levi wakes up all up.

On Tuesday we hosted the soccer banquet for our girls team. We try very hard to take the time to honor each girl and really enjoy speaking life into them. Here is a photo with one of our favorites, who sadly (for us) is graduating this year. I know her daddy and aunt read the blog religiously so I know they won’t mind me sharing her beautiful face with you all.

Jake and I spent a long time talking about coaching soccer this week. It is one of the extracurriculars that we do that isn’t directly pointing to God, but as we talked we could speak about God moment after God moment where we have been able to plant seeds of the gospel with the teens. Although coaching is an enormous amount of work for our family, we still feel like we are doing what God is calling us to do. To make an impact in the world you have to be willing to spend meaningful time and build meaningful relationships with the lost. Soccer gives us that opportunity.

Speaking of teenagers, holy moley y’all! Our Sunday night home Bible studies have been growing, and we are now up to 35-40 middle school, high school, and college aged kids at the house. I am still cooking dinner for them each week, which is a marathon but oddly a lot of fun. Tonight we did fettuccine Alfredo, ham/turkey sliders, cheeseburger dip, pizza rolls (a weekly staple), and peach and cherry cobblers. It requires a lot of multi-tasking a lot of careful planning with the grocery ad, building the menu around all of the buy one get one free items that week. We have been going chapter by chapter through different books of the Bible and the conversations have been so great!

Yesterday the women’s group at our church went on an adventure to a small town about an hour away to do some shopping. The shops were all on one strip through the center of town, and all unique non-chain stores with one of a kind treasures. It was an all day adventure that went from 8am-4:30pm so I don’t often choose to go on these as it is hard on Jake. But they needed someone to drive the church bus so I used that as my justification to myself for going haha.

I started out with a small group of them but ended up breaking off and walking the strip by myself, glancing through shops along the way. It felt so odd yet so refreshing to be alone. It felt good to be anonymous, and not the mom pushing the wheelchair. I laughed to myself in every single store, marking each one as “non-handicap accessible” and just imagined the thought of trying to bring Malachi’s wheelchair into the narrow, jam packed stores there. Then I laughed even harder thinking about Levi and the ticking time bomb he would be around all the glass valuables.

It was such a relaxing getaway.

I didn’t really need anything in particular and we don’t exchange Christmas gifts with outside family and friends, or even each other so I wasn’t really watching for anything. But when I saw this throw pillow I knew I needed it in my line of vision each day.

Just in case you can’t read it, it says: “God didn’t promise days without pain, laughter without sorrow, nor sun without rain. But He did promise strength for the day, comfort for the tears, and light for the way.”

I know I have told you this before, but contentment is an emotion you have to choose to take hold of. If you truly desire it, you can find contentment in each and every situation God brings you into. But in order to truly grasp that contentment you have to lock eyes with it and now allow yourself to look to the left or the right.

Since this is such a struggle for me I made the decision to cover the walls of our new home with scripture and things with a godly focus. That way anytime I start to let my focus stray I am able to quickly remind myself of the blessings that we have been given. I need my life and my soul to be saturated in the words of God and the promises He has spoken to us as His children.

Someone wrote me a brief message on Facebook this week that humbled me greatly. This particular momma had lost her son last year and she never got the chance to be the medical momma that her son’s diagnosis would have required. Here is a portion of what she shared: “Seeing you and your boys, the honest way you write about the blood sweat and tears, the truth you reveal about how difficult it is but possible with God…It is priceless for me. I miss my boy and wish every day that God had planned for me to be a special mama like you. Seeing how wonderful you are with those boys in spite of , and through, the immense struggles…it helps restore a tiny piece of the brokenness within my soul. Somehow reading what all you go through helps me feel closer to my son. I imagine I’d have experienced many of the same trials.”

This message rocked my world. I don’t know that I can justly explain the many reminders God gave me through this small note, but it was like He peeled off a clouded layer from my eyes and help me see that some looking into our lives see the pain and struggles yet still desire for a chance at our world.

Have you ever stopped to realize that your trials could have been someone else’s blessings?

That hospital stay you had with your child….but then you came home. Some moms don’t get to say that.

That seizure that lasted four minutes…but he snapped out of it. For some children that moment could mean death.

That surgery or treatment that you had to endure…but there was a fix for your issue. Some parents don’t have that blessing.

What a powerful reminder that the journey that each of us have been assigned can be a source of light for others traveling similar paths, even when we feel like our days couldn’t be darker. And, oh my, how the blessings are often hidden in plain sight.

This week I have been thanking God for even the dark days as I remember that I could have missed this life. I could have buried these children and never been given the chance to know them. So instead of wallowing in pity at our sleep deprived 3am play times I should embrace those moments, recognizing how truly blessed I am.

It is all about what we choose to focus on.

Much love,

Leah

 

We all have them…those things on our to-do list that we really truly don’t want to get to. Week after week they get pushed further down on the list as you try to wish them away. I accumulate several of those “things” on my list and this week I decided to try to tackle a few of them.

I spent hours this week on the phone with medical supply companies, insurance, doctors, and pharmacies trying to shorten that list. It truly is a mind game trying to deal with many of these companies and the psychological effects of hours of hold music is pretty intense. But each time you get to put that sharpie maker line through the list it brings such a rewarding adrenaline rush.

Yep, I am officially a weirdo medical mama haha!

The boys have had a great week. We tackled a myriad of appointments as well as some added on social activities. My mother had a birthday this week so we celebrated with my brother (who lives locally) on Friday night. He has several dogs and Malachi’s face lighting up with those pups made me realize how much he misses his dogs.

For new readers to the blog, Jake and I had two lovable dogs when Malachi was born. Right before we moved out of our cabin in 2016 we lost one of the dogs to a heart attack. Our other dog went to Ohio to stay with my in-laws while we were living in the Ronald McDonald House in Cincinnati. Sadly, we never go to see him again as he too passed away a few months ago. We really wanted to bring him back to Tennessee but couldn’t justify it at the time with Levi being hooked to so many wires that were susceptible to being pulled out/off of him.

Malachi loves animals but he really loved his dogs. This weekend planted the seed in my head of getting him another dog in the near future, and possibly even looking into a service dog that could help is detect his seizures particularly at night. I don’t think we are ready for that quite yet but maybe in the future.

Malachi’s quality of life is priority number one for our family and by golly if that means we get that boy a dog then I want to be able to do that for him.

I had the opportunity to speak to a speech/pathology class at a local college on Tuesday afternoon and share the boys testimonies and medical histories. I love opportunities like these as I hope I can share a parental side of the world they are about to enter that textbooks may not provide. They asked a lot of great questions about the boys.

Levi got some new shoes this week. Can you spot the irony…

Malachi has a big exciting event coming up! Our small town has decided to set up a giant Christmas tree by the courthouse and they have asked Malachi to be their “grand marshal” and be the one who lights the Christmas tree. I told Malachi about it and he went wild with excitement that they were going to clap and cheer for him. He loves attention and I can’t wait to let him spend a minute in the spotlight. Levi takes so much of our focus and I often feel like Malachi gets overlooked. It is special that this gets to be just for him to do.

Levi has been a complete train wreck in my office during the week. If he isn’t climbing on the walls he is finding things to dump out all over the floor. It is a mix of exasperating and exciting that we have such typical behaviors in our son. When you have a child that can’t get his body to cooperate with his brain it really changes your perspective when another child does those things.

Here is a video of the mess he made when I stepped out to the bathroom for a minute:

The boys got some early Christmas presents from their grandparents, Malachi getting some new Disney movies to watch and Levi getting some really neat g-tube friendly clothes from a new adaptive line at Target. I took a photo to show you how the clothes work. So cool!

Levi is still very eager to include Malachi in his games and imagination, this week making sure they both could sing karaoke together.

If their sweet relationship doesn’t bring a smile to your face then you are a robot haha.

Jake and I are still having the youth group come over to the house on Sunday evenings, hence the later than normal blogs! The group is continuing to grow and we are up to between 35-40 teens at the house each week. We feed them all dinner so I usually start cooking around 2:00 for their 6:30 arrival and the last one leaves between 10:30-11:00. Our Sunday evenings have become a marathon but both Jake and I feel so strongly that this is what God wants us to be doing right now.

Logistically getting all those teens in our modest house has been a challenge. We successfully tracked down enough seating and space for 30 but as the group grows we have to be more creative so I started looking for a better kitchen table.

Back when we sold our cabin and started the building process we shopped for a new dining room table. Everything we choose to get for the house has to fit our situation perfectly. We took Malachi in his wheelchair and tried him at many different tables, trying to find the best fit for his chair. We found the perfect table that has cafeteria style benches that swing out leaving room for his chair to slide in, but it was $800. I couldn’t justify spending that much on a piece of furniture that would likely take a wheelchair beating and have the scars to prove it.

Fast forward to this week. As I started my search for a table to help increase seating for our youth nights I found the exact table we fell in love with years before. The man selling it had purchased it six months ago and was selling it for nearly a third of the purchase price and was willing to deliver.

I know it sounds like a stretch but it is in moments like these where I am reminded that my God is a God of details. We tried out the table this week with the group and it made such a difference! And Malachi loves it too so it is a win-win.

On Sunday nights I have been studying the book of James with the girls. Tonight we went through James 4 which has a very familiar verse inside of it:

¹³ Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” ¹⁴ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. ¹⁵ Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

I explained to them that at some point in their lives this verse is going to come to life for them. It will grow legs and take on a brand new meaning. There will be a day that they wake up with their plans made but something will go terribly wrong and all of those plans will be meaningless as you struggle to grasp what just happened.

Some of you are probably nodding right now as you reflect on a day your world got turned upside-down.

Obviously for me there are several of these gut wrenching moments…truthfully too many to count. But the biggest ones being the nights that each of my boys were born. Each day started out with a plan in place that had nothing to do with birthing a child. And each day ended with a fresh c-section scar and a baby in a NICU.

There are so many variables in this world that we can’t control. But we like to ignore that fact and assume that we can dictate our path and steer the will of God in the direction that we want.

We spend too much time making plans and trying to make them happen; in reality, we need to be spending more time finding contentment in the will that God has for our lives.

When we read those verses we automatically assume that the command to stop worrying is for our own mental health. But this request from God for our unconditional blind faith is meant to concrete our relationship with Him. He is asking us to let go of our plans and hold His hand while we allow Him to lead us.

There is so much freedom to not worrying about tomorrow.

I say all that, and I bet you $100 I will worry about tomorrow in the next hour as I lay my head on the pillow. It’s an addicting habit that is hard to shake. But God doesn’t expect perfection, He simply wants our heartfelt and persistent effort.

Please be in prayer for Jake and I this week as we combat worry. We have been having a lot of conversations about upcoming tests and procedures for the boys in December and those conversations breed worry. Pray with us that we find contentment in the will of God.

Much love,

Leah

Highlights from this week!

The boys painted a massive pumpkin together. Malachi loved the painting part and Levi loved sneaking licks of the paintbrush when mommy wasn’t paying attention. Malachi really gets into art and craft style things and loves the sensory input it gives.

As much as I hate to say it, I think Levi is a sensory kid. I know that is a foreign lingo for some of you so I will explain. Levi has a very hard time dealing with certain materials or situations in which he encounters something he isn’t used to feeling. For example, he can’t physically touch certain foods and certain sounds continually send him into a frenzy.

There is a formal disorder called Sensory Processing Disorder that is defined “a condition in which the brain has trouble receiving and responding to information that comes through the senses.” I don’t know if Levi falls into the formal diagnosis and frankly I am not chasing another acronym for his medical sheet, but it is something I try to keep in mind throughout our day. We try to integrate sensory input into as much as we can to help him.

Levi has an imagination that blows me away. I always thought you had to teach your child to pretend, but Levi’s imagination is impressively innate.

Here is he pretending that his french bread pizza is a phone. He was calling his dad even though Jake was sitting right next to him. He usually hands me the “phone” and then gets really mad when I don’t say the right things.

Levi is also impressively helpful these days. He is following two step requests without hesitation and he is genuinely helping me so much. I can hand point to something on the floor of one side of the house and ask him to take it to his laundry hamper and he will go across the house and do it. Or I will ask him to pick up his toys and take them to the play room and he will do it! Kids are super cool.

There are certain weeks where this special needs mom gig seems easy and natural. Then there are weeks where focusing on the positives is a true challenge. SO much of my day is a mental challenge, trying to convince myself that “I’ve got this!” or “things will be easier tomorrow.”

This week those reality checks kept hitting me in the gut, punch after punch, until I finally admitted what I stuff down inside and don’t verbalize often…this life can be rough!

Levi stopped sleeping through the night this week. He has been waking up around 5am, and Malachi is locked into 3:15am. I work for hours trying to get both of them to go back to sleep, and can usually succeed with one but not both. The sleep deprivation is a real concern for all of us; I worry about their development if they aren’t sleeping. I am really hoping that the time change will be a good reset for my crew.

On Monday afternoon we went down to Chattanooga to have some adjustments done on Malachi’s ankle foot orthotics (AFOs). He has grown a lot over the last year and was getting some pressure sores on his ankles from his braces. These appointments don’t usually take long; they just heat up and re-mold his braces in the pressure areas.

For some reason when we walked into the building Malachi started sobbing. It was a shoulder heaving, struggling to breathe cry which doesn’t happen very often with him. I tried to quickly assess what might be going on, making sure I hadn’t pinched him accidentally in his chair and I narrowed it down to a possible tummy ache. I picked him up and put him in my lap to comfort him by singing in his ear and Levi either developed some serious empathy or some serious jealousy, as he too started sobbing uncontrollably. He got so worked up he started to gag and nearly vomited, his face turning colors from all the energy he was using to cry. He wanted to be in my lap too but the support Malachi’s body requires makes that impossible.

So here I was in downtown Chattanooga alone with both boys screaming and clinging to me for no apparent reason. And then the looks of pity came. Pity is an odd thing. Sometimes when I look in the mirror I look back at myself with eyes of pity. But when it comes from others, that is a little harder for me to accept. Maybe it is my pride, maybe it is my protective momma instincts…but the pity looks always get to me.

It was one of those moments where I really truly wanted to join in their crying, but doing so would absolutely deplete what little energy I have left so I did the best I could to comfort them until everyone recovered. I focused hard on fighting back my own tears…once that floodgate opens I can’t easily turn it off.

Tuesday was our therapy day and I fought back tears again all day. My mind kept flashing back to conversations with Malachi’s therapists when I was pregnant with Levi stating “It will be so odd to have a child that doesn’t have to be at the doctor and therapy office all the time!” But now I have to devote an entire day to therapies for both boys.

I desperately want to live in a Peter Pan world where I can just imagine that my boys are healthy and strong. A world where their medical issues don’t exist and all they have to focus on in life is being a carefree kid and me being a mom.

When these thoughts take over I talk to Malachi a lot about heaven. I tell him about all the things he will get to do there…I tell him I am going to chase him but never be able to catch him because he will be able to run so fast! I tell him how Levi and him will be climbing the tallest trees and I will be yelling anxiously after them to be careful (even though it is heaven and tragedies wont exist haha). I tell him one of the things I look forward to the most is seeing him run towards me and wrapping me in a big hug.

When we have talks like this Malachi clings to every word and giggles at the funny parts. He loves to talk about heaven! And it helps me deal with my earthly grief.

I am absolutely confident that a huge factor in my wayward emotions lately is the fact that Levi is about to turn two years old on the 14th. The birthdays of my boys were both uniquely challenging and my heart hurts when I allow myself to remember each of their births. I do not purposefully focus on those memories, but small things trigger those thoughts.

We went up on Malachi’s CBD oil this week and are seeing some great improvements in his cognitive rate. So much so that other people that don’t know him well are noticing it. The small increase (0.2mls) has also eliminated some daily seizures. There was a day this week that he didn’t have a single seizure that we saw! That is probably the first time that has ever happened.

I am having so much fun dressing these brothers alike. We have decent wardrobes for each boy thanks to generous hand me downs. This week we bought Levi some new shoes, which have to cover his ankle to help him with stability. It was my first experience of true shoe shopping with an opinionated kid and it was quite the adventure. Shoe stores have a whole lot of boxes that apparently need to be reorganized by a toddler.

Levi’s ankles are definitely getting stronger though! This week he mastered climbing his slide and says “I did it!” when he gets to the top. Here is a video:

Earlier this week I saw a photo on Facebook that fascinated me initially then it started to consume my thoughts. It is a photo of a dissected airway of a child who passed away from choking on a peanut. You can actually see the peanut lodged in blocking the air flow.

As I went throughout the week I thought long and hard about this photo and thought about Levi. If a typical child can die from something as small as a peanut what could happen to my sweet Levi who can’t close his vocal cords and protect his airway. Levi loves food but can’t really eat any large quantities- each bite has to be smaller than my pinky nail. My goal is to get him off of his feeding tube eventually but think about how many tiny bites he would require to actually be full.

I am so proud of the progress he has been making with the types of foods he will eat, but this week I have been so discouraged that while the food experience is fun for him, will we ever actually advance with it? Will Levi be a teenager and still having to cut his food into minuscule pieces?

If I am not very very careful I catch myself mourning over things that have yet to be. It is so wild how dangerous worrying can be to your mental health. Thoughts can so easily consume you and literally change your emotional attitude.

I feel like this blog has been a doom and gloom one unintentionally. Let’s end on some good stuff!

Jake and I have learned over the last six years that we have to give our financial situation over to God. We literally accrue hundreds of thousands of dollars in medical bills each year, some years breaching into the millions. We are very frugal in a lot of ways and don’t believe in having any debt aside from our home. If we can’t afford to pay cash for it, we don’t get it, plain and simple.

Our finances could easily become a worry for us and consume our thoughts, adding just one more stressor to the list. But God has sustained us in ways that a simple blog post can’t even convey.

We have learned to be very sensitive to the leading of God, even when it doesn’t make sense. This week we made several purchases that we felt God leading us to make for others. Things that “on paper” we couldn’t afford to do. On the way home from making those purchases we went out to the local mexican restaurant and met Jake for a 3pm dinner- random, I know. There were two other families in the restaurant whom we had never met or spoken to.

We went to go pay and learned that one of them had purchased our meal, and the other met us in the parking lot and explained that he felt led to give us some money, handing us a significant amount of money. Interestingly enough, the amount needed to cover our purchases for others a few hours before.

God continually takes care of our family in beautiful ways, but he also expects us to be faithful in our obedience to his leading. Jake and I have each had some different callings on our hearts lately that we are working on seeing through. I am feeling led to do another outreach to the ICU moms at our hospital for Christmas so more info on that to come!

Jake has been visiting a homeless tent community in Chattanooga with a few friends from church and he has been working to meet their physical needs before winter fully hits. They made a trip out there yesterday and had the chance to share the word of God with the group as well as bring some tangible needs.

As we prepped for his visit we went through our closets gathering warm things to take. I caught myself viewing things with the mind of “What do we no longer wear.” But as I looked at our four winter coats EACH I rolled my eyes at my innate selfishness and we picked out the best and warmest to pass on to them. How often do we disguise our generosity as an easy way to get rid of useless stuff or junk. Is that really the heart God calls us to help people with?

All this to say, God doesn’t require our money or our expertise in an area. He simply asks for our obedience. We often fret about the details of things when in reality God will go before us and figure out those details.

I think about the Israelites wandering in the desert after leaving Egypt. God literally dropped food from the sky for them and brought forth water from a rock multiple times. When you are walking in His will He will continually provide what you need.

Deuteronomy 2:7. “For the LORD your God has blessed you in all that you have done; He has known your wanderings through this great wilderness. These forty years the LORD your God has been with you; you have not lacked a thing.”

May our eyes always see the ways that God continually provides for our family; and not allow it to become a privilege instead of a undeserved blessing.

God Bless,

Leah