We had a medically complex week…one of those weeks that was going perfectly then stopped in its tracks and did an “about face”.

Jake was off for the week and we were looking forward to some family fun. On Sunday Jake took Levi to the golf course for the first time for some bonding time.

In the meantime, Malachi and I cuddled up and enjoyed a lazy Sunday together with the promise of just he and I going to see the new Disney movie, Encanto. He loved that idea and his jealousy simmered down quite a bit.

Wednesday rolled around and we headed to the theater. Malachi really enjoyed the movie and also enjoyed the one on one time with mom. Afterwards we went grocery shopping together which he was excited to do, but he was having a harder than normal time keeping his head up. To be really honest, I was frustrated with him over it. When he chooses to not hold his head up it looks like his neck is broken and driving him through a busy grocery store with a wheelchair and a cart in tow put lots of eyes on us anyway, not to mention Malachi’s broken looking neck.

I asked him if he wanted to buy mom flowers on our ”date” and he signed a quick yes and smiled with pride.

Later that evening Malachi felt a little warm so I checked his temp and it was 99.2. He wasn’t really acting sick or different so I gave him some meds to help him rest, but 30 minutes later his breathing sounded a little more labored than normal so I spot checked his oxygen saturations. It read 85…education moment: obviously 100 is the best saturation you can get. Malachi’s baseline is 94-95. Anything below 88 is hopsital worthy at our house, and I usually pack a bag at 90 to prepare for the trip.

But Malachi still wasn’t really acting sick. So I grabbed the hospital grade pulse ox and strapped it on, hoping that we would get a better reading, but unfortunately it confirmed the low saturation. Malachi was sleepy eyed and drifting off so I made a judgment call to hook him up on our oxygen concentrator and wait until morning to re-assess. I stayed up all night watching those numbers and hoping that the solid rest would magically heal him.

Thanksgiving morning rolled around and Malachi was parked on 2 liters of oxygen. I felt comfortable continuing to keep him at home and treating him there but then his heart rate starting spiking up. Whenever Malachi has an infection that is one of the main ways his body tells me, and since infections don’t typically self resolve I decided this was worthy of a trip to the Emergency Room at the Children’s Hospital.

But I will tell you, I really really really did not want to go. I want what is best for my son, but I loathe spending holidays in the hospital. It highlights some of the hard parts of our journey and attaches a significant date to them. I can tell you stories about specific surgeries or hospitalizations but can’t tell you the month or day. But I can tell you in great detail about every Christmas, New Years, Thanksgiving, Valentine’s Day, Birthday, etc that we have spent in the hospital because of the memorable date attached to it.

In an effort to avoid reality I packed my bags very slowly- one for the ER and an extra in the car with three days worth of supplies and clothing in case they kept us. Which unfortunately they did.

After several tests and several hours in the ER we were admitted for what looks to be a very early bacterial pneumonia. His lungs aren’t terrible yet, which is a blessing. The viral panel came back completely clear but his white blood cell count was high. All signs indicate a lung infection so they are treating it as such.

Friday morning during rounds we talked about a plan for discharge and the doctors left the decision up to me based on my comfort level. While I wanted to immediately nod and sign discharge papers I knew that Malachi wasn’t quite ready to go home. When he napped his oxygen was down at 83, which is dangerously low. But by Friday afternoon he had stabilized a bit more and I brought him home to continue treatment from here. The antibiotics seem to be working on whatever crud is in his lungs and we are doing nebulizer treatments and home chest therapy to break up anything stuck in there.

Malachi’s demeanor never really changed through the adventure. He was in great spirits and not acting like his normal sick self until Friday morning for a few hours. I talked up the stay, presenting it like a slumber party for just he and I, and he really liked that concept. We watched movies together on the hopsital bed in between nurses rounds, doctors visits, and chest therapy.

We had big plans to pick out a Christmas tree and soak in the last few days of Jake’s time off but those plans have been put on hold until Malachi is back to a safe zone. He isn’t worse but he is progressing toward better incredibly slowly. I have canceled our appointments this week and we will be focusing on healing.

But for conversation sake, let me rewind the week a bit and share some fun things! We officially brought home the batmobile for the boys!

And Malachi couldn’t stop smiling.

While we were in the hospital a wonderful friend helped Jake clear out some trails in the woods behind our house to we could go trail riding. I bundled Malachi up and tried to take him out for a much anticipated trail ride but he ended up having a pretty big seizure once we got out there- I think we tried a little too soon.

The boys got some much needed haircuts this week and Levi looks like a new kid!

Basketball for him has been…umm…interesting. I took him to his game on Saturday and I had several fans laughingly tell me that he was their favorite to watch. I am not convinced that is a good thing! I think it is safe to say that I have a class clown on my hands who loves to entertain. He ran up and down the court with his arms inside his jersey for a huge part of the game.

He snuck into the closet, determined to wear dad’s basketball shoes to the game and was mortified when I told him no…and made him put on shorts.

Levi wanted to give Malachi a real hug after his hospital stay so we found a way to make it work.

If I am being honest, I have not been in a great place emotionally and mentally. The day we got home from the hospital Jake started coming down with a cold. He is masking up in the house and washing hands often. I am cloroxing the house frequently but it is really hard with Malachi’s level of hands on care to keep these germs from him. Not to mention little Levi, who slept face to face with Jake while we were gone. When he gets a common cold he vomits non-stop from his airway anatomy when swollen.

While we were in the hospital the rounding doc and I had a pretty hard conversation about how the majority of children with Malachi’s severity of care pass away from lung infections. He explained that the more Malachi grows, the harder time his lungs will have keeping up with managing sickness. Coming home with pneumonia (but a clear viral/respiratory panel) and being introduced to a cold is a recipe for being right back in the hospital. And the ominous thought that one day a similar scenario to this one might lead to me leaving the hospital empty handed has been hard to handle.

I continue to pray over Malachi’s death, asking God to protect him from pain and suffering when he calls him heavenward. Oh the faith this journey of motherhood requires. But I have nothing else to cling to.

I have shed a lot of tears this weekend, overwhelmed with the suffering that hides around the corner in wait for our family. The reality is that our journey will never get easier. It will only get more complicated, more messy, and more heartbreaking. And I just really don’t want to accept that.

On Friday night I got Malachi settled with all his gear and went to take a burning hot shower, something I always look forward to after stays in the germy hospital. As I looked in the mirror I didn’t recognize the person staring back at me. The dark circles, the gray hairs, the added weight, the dark and lifeless eyes. As I stared in the mirror I couldn’t help but wonder what God sees in me that I can’t see. Clearly in his sovereignty He feels that I am the perfect person for the job of raising Malachi and Levi, but I just can’t seem to see the same things He does. I just feel so ill equipped. And so incredibly alone navigating a world full of suffering. My mom heart wants to protect them from pain, but it just isn’t possible.

I have had to face a reality that my job isn’t to keep Malachi alive- the timeline for that is in the hands of God, where it should be. My job is to be Jesus to him during his time on earth.

Matthew 25 tells us ”For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink…I needed clothes and you clothed me…I was sick and you looked after me.”

”And the righteous will answer him, ’Lord when did we see you hungry and feed you, or thirsty and give you soemthing to drink?…Or needing clothes and clothe you? When did we see you sick…”

”The King will reply, ’Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

As much as I want to be Jesus and give my boys the miracles they so desperately need, that is not my role. My job is to love them fiercely, the way that Christ loves them. I am to imitate and show Christ to them so when they meet the real deal the they run towards Him with open arms. And in a world of unknowns and impossibles, that is a role that I can focus my energy on.

My prayer this week is a selfish one…that God gives me His eyes and allows me to see myself through His lens. To be able to get a glimpse as to why God has entrusted me with such a heavy but beautifully imperfect journey. The blessings far outweigh the difficulties but when I am swimming through rapids I can’t seem to get my mind on anything else.

And please pray for Malachi, that he fully heals and God protects all of us from Jake’s cold. Pray for a week of strengthening both physically and emotionally.

Much love,

Leah

Thanksgiving week is here! Where we live in the south they close schools for the entire week and the break truthfully couldn’t come at a more needed time. Malachi is back to rough nights and seizures. He always struggles when the seasons change. Having Jake home to hand him off to in the mornings is such a blessing.

One of the most challenging parts about the special needs world is dealing with the unpredictability of it. Routines are not easy to establish when you are battling epilepsy and one seizure can change the course of the entire day. I have learned not to plan too far in advance to prevent myself from feeling disappointment and frustration when things don’t go like I envisioned they would.

Malachi had to have some work done on his orthotics this week and Levi has outgrown his! With Malachi’s AFOs they can heat up the material and remold it when it gets too tight and starts causing pressure sores. Levi’s are shoe inserts so we can’t modify them but rather just order the next size up.

We did get some fun news this week- a few weeks ago I wrote a letter to a local grant board about using some grant money towards a golf cart/UTV for the boys so we could spend more time outside and on family ”walks”. It will also make outings to non-handicap accessible settings something that Malachi can now do. We have to say no a lot these days because it is logistically not possible to get Malachi there, and the larger he gets the less safely I can carry him for long distances.

We received the formal approval and have been working with a local company to find the perfect machine for the boys needs. We are planning to pick it up this week and Malachi is absolutely thrilled. When we went for a test drive he got the giggles just sitting in it. Then we drove it for a bit, him smiling ear to ear the whole time. I turned to Jake and said “I guess we need to go back now.” And when Malachi heard that he started crying crocodile tears. He DID NOT want to stop riding it, and he cried the whole way back to the parking lot.

We did let him choose the color, which he was excited to do signing no for red and blue and a hearty yes for black.

Education moment: Grants. There are several organizations around the country that like to help in situations like ours. They recognize that much of our income goes towards the non-fun medical things, like appointments, therapies, and procedures. The offer small amounts of money in the form of grants that you can apply for and use for the things insurance often does not cover (diapers, medical tapes, specialized equipment, etc) There is an excellent grant in Chattanooga for surrounding counties and we have been blessed to receive it for Malachi since he was 2 years old and Levi since birth. Each year we have applied we have been granted $2,000 for each boy each year. Initially I used those funds for medical things but as the years went by Jake and I changed our mindset to ”quality of life” things that enrich their everyday. Things that we dream of for our boys but could never justify depleting savings on.

We have used it towards the therapy pool, the playground, switches for Malachi, adult sized changing table for Malachi, tube friendly onesies for Levi, special mattresses and beds for safer sleeping, specialized formula, medical tape, oxygen concentrator, etc. We applied for other grants when Levi was born to help with some of the extra medical expenses incurred from being in the ICU for 131 days. The applications are typically tedious and long but I understand why.

The insurance side of special needs is brutal and often offensive. For example, we received a denial for a bath chair for Malachi to help support him for showers because they said it was a ”comfort item and not medically necessary”. This week we received a denial for a chair for Malachi we ordered in July because we already had a chair (that he has outgrown and Jake and I paid for out of pocket) that should be sufficient. These companies are most definitely not on our side for things, so finding grant companies willing to help and make things easy are a breath of fresh air. We spend months meticulously planning what to spend the granted funds on, and being able to dream about some bigger items and projects we could do is actually really fun.

There are some weeks that I am more emotionally fragile than others and for some odd reason this was one of them. Throughout the week I felt like I was on the verge of tears but I couldn’t seem to figure out why. Last week was Levi’s birthday, which usually equals a fragile week but the emotions stalled for a week.

I have been reflecting so much on our journey with him and remembering those hard conversations surrounding his birth and diagnosis of bilateral vocal cord paralysis. The only option we were presented was to put in a trach and a g-tube and wait and see if he was part of the 50% with this diagnosis whose vocal cords “wake up” and are no longer paralyzed. If this will ever happens it happens by the age of 5.

Levi just turned four last Sunday and his vocal cords are still both paralyzed. We have not seen any improvement in those vocal cords and our chance for ”normal” function is whittled down to less than 365 days. And as much anxiety as this brings me now I can’t imagine what life would feel like had we followed through with a trach. The reality that he would need it for a lifetime would have most definitely been hard to take in.

Thanks to some brave surgeons and a rough start in life, Levi will be able to live life without a trach. But the diagnosis is still there and the dysfunction still exists. The specialist appointments, the surgeries, the continual monitoring will continue until those cords start moving. Oh how I long for an easy life for him. The reality of hitting 4 knowing that the final outcome is determined by the age of 5 hit me in a weird way this week.

This week I took Levi into Hobby Lobby for a few minutes to grab one item. We walked straight to it and then straight to the cash register but on the way there Levi and his busy hands found a very breakable decor item on a display near the floor and I watched it domino with a crash. My internal voice was willing ”Don’t be broken, don’t be broken” but as I picked it up off the floor I saw that the damage had been done. Levi was wide eyed, knowing he did something bad but also knowing he didn’t intentionally do the bad thing. I was admittedly frustrated and explained to him that when we break things that aren’t ours we have to spend our money and buy them.

We got up to the counter and the cashier scanned the item as I crossed my fingers hoping for a 50% off miracle on this weird and now broken item. I explained the accident, hoping for a little Hobby Lobby grace but also knowing that doing the right thing with Levi watching was more important than saving $9.99. But it rang up as full price and in comedic fashion the cashier very gently wrapped the broken item in paper and put it tenderly into a bag.

When we got home I pulled it out and put it up on the windowsill, not quite sure what to do with it. Even whole I would not know what to do with it haha. And each time I looked at it throughout the week I felt a pang of bitterness that I paid full price for such a broken item.

I was doing the dishes a few days ago and looking at the odd little figure and it suddenly hit me that this was such a parallel to our journey with our children. As society we assign value to whole, perfect, and typical. The slightest blemish on an item and we expect to see it sent to a clearance bin or taken to a manager for a price reduction. Our eyes no longer see it’s worth or value.

I thought of my two beautiful boys, each with their own blemishes and differences. Each with spots of damage speckled in their brains. Each with whole body issues because of this brain damage. Each with layers upon layers of diagnoses. Many look at them in the same way I look at this figurine…less than and damaged.

But God has taught me through each of their testimonies that there is so much unique beauty in the broken. The things we deem as broken God sees as uniquely and wonderfully made. Sometimes God’s creations don’t look like the rest on the shelf, but it is through those pieces that stories full of God’s goodness can be written.

We were created in God’s image. Not his physical image, but rather a reflection of His character, His qualities, and His goodness.

I am going with a well known verse for this evening’s devotional thought:

Psalm 139

¹³ For You created my innermost parts;
You wove me in my mother’s womb.
¹⁴ I will give thanks to You, because I am awesomely and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
¹⁵ My frame was not hidden from You
When I was made in secret,
And skillfully formed in the depths of the earth;
¹⁶ Your eyes have seen my formless substance;
And in Your book were written
All the days that were ordained for me,
When as yet there was not one of them.

¹⁷ How precious also are Your thoughts for me, God!
How vast is the sum of them!

When I read these verses and apply my son’s names into the pronouns I find myself feeling ashamed for mourning over their differences. Yes, it was something I never expected to receive- I expected whole and perfectly formed and functioning. But God formed my children and their differences were also skillfully formed…which means they are perfectly imperfect. And He made them in His image, to bring Him glory and honor. Why do we place so much emphasis and value on the seen qualities?

I know by now you are likely rooting for the random Hobby Lobby bathroom man mascot that sits on my windowsill. I can’t promise you that he will find a home here, but I can promise you that God intended to use him to remind me that His eyes and my eyes don’t share the same vision. And just like the creepy figurine in my window, my children have been gifted with journeys and stories that leave the fingerprints of God wherever they go. What a blessing a life full of God’s fingerprints can be.

This week my heart and eyes are set on looking for the imperfect things in this world and seeing their God given value, as hard as that can sometimes be.

Much love,

Leah

Happy birthday to our sweet Levi. This week I have been really thinking about the plans God has in store for Levi and my curiosity has been flaring. Watching him move steadily through the milestones and stages of life has brought a healing to my heart…I always feel bad admitting things like that, as if stating it de-values my journey with Malachi. If you know me you already know I treasure every bit of my Malachi, even the hardest parts of our walk as they have heated my up and re-molded me into a new creation. Levi’s journey has just been so incredibly different and those effortless moments of progression are so energizing.

Levi’s empathy is unmatched for a child his age, and undoubtedly having a brother that needs some extra help often has something to do with that. It is rare that Levi doesn’t cry during an episode of Daniel Tiger as he feels all of the emotions from each character. He celebrates Malachi’s achievements more than his own and is his brother’s biggest fan. Levi started playing basketball this week and he was more excited about Malachi getting to help ”coach” then he himself being able to play. He also chose to go bowling this afternoon for his birthday and Levi celebrated Malachi’s bowling achievements way more than his own. What a blessing they each are to one another.

Speaking of basketball, oh boy. First of all, check out this baller in his jersey and new birthday basketball shoes.

And now let’s talk about how much fun we had watching him play. There’s our #12 playing some serious defense.

He has zero basketball knowledge and lots of soccer knowledge so when they use the soccer terms he knows (pass, dribble, shoot) he defaults to his footwork. He would set the ball down by his feet so he could obey what they were asking him to do. We have several funny videos but here is one of my favorite ones; the coach told him to dribble:

And this one when the coach told him to pass it:

But he absolutely loved the idea of being on a team, practicing, and games and it has been a talking point all week. Seeing his excitement to put on his jersey and go to practice was just precious.

Malachi is definitely dealing with some jealousy and we are starting to enter uncharted waters that need to be navigated delicately. I explained to Malachi that Levi’s team was only for the younger children but that he could also get a jersey to wear to the games and he could help coach. We programmed his recordable switch with a whistle and his job is to blow it any time the other coaches blow theirs. He likes the game of listening and trying to be on his A game. I took a video of him as well and it makes me smile:

We let Levi pick out some activities for his birthday and stop #1 was bowling at his request. He lasted about 6 frames which was longer than I anticipated.

Malachi wasn’t “into” it until I informed him he was beating Levi. Then he really came back to life quickly. The empathy thing I mentioned before is most definitely a one way street with these brothers. And Malachi has a spirit of competition in him. He was very particular about wanting to bowl without help from mom and dad so we try to be as hands off as possible after we set him up for success.

After bowling I told Levi he could have a special birthday treat; anything that he wanted! I offered suggestions like pizza, mac and cheese, ice cream, a slushee…

And he was insistent that his one and only birthday wish was a kids ice water from McDonalds. And that is just what he got!

He got a ”need” gift with his basketball shoes and a “want” gift with a pack of superhero costumes for him and Malachi to share. And he was one happy birthday boy!

Levi’s g-tube had been causing some irritation over the last few weeks so the doctor upgraded us to a slightly longer stem. They came in the mail this week and when I opened the box Levi knew from experience exactly what was about to happen. He started crying but then shocked the socks off me by requesting that we put the new one in right away. What a good sport he was! Then today the new balloon burst and his g-tube slipped out. So he had to do another tube change but again he impressed me with his newfound maturity to understand when things just have to happen.

Malachi’s seizure control has been so so so good. He is still having daily seizures but most of them are very short and less intense.

I have been working so hard to try to get him into bed earlier than his typical 3am. We are slowly making progress and last week he was averaging between 5-6 hours each night, hallelujah!

Malachi also spent a few afternoons at school this week. I asked him on Wednesday if he wanted to go to school and he signed no. But Thursday and Friday was an adamant yes. He is only going for about two hours each day, twice a week. Even that brief period of time tuckers him out.

As usual, today has bubbled up so many emotions and memories for me. Some of the most amazing moments in my life also qualify as some of the most heartbreaking. Motherhood has been such a unique blend of joy and mourning and birthdays are such vivid reminders of that blend.

I will never forget the heart flutters I experienced when I laid eyes on this photo for the first time.

I was not awake for Levi’s birth and Jake had this photo to share with me when I woke up from surgery. I remember so much anxiety lifting from my shoulders when I saw this photo and felt the emotions rising up from the base of my throat. I thought he was one of the most beautiful things I had ever laid eyes on and I don’t even remember seeing the ventilator tube. All I could focus on was his healthy color and how much he looked like a healthy baby.

Today Jake and I were talking about our crazy life and I was explaining to him how lately I have felt like I am in an inner tube racing down a raging river. I have no paddle and no control over where I am headed downstream. I can only see a few feet in front of me on my journey but there are lots of bends in the river with surprises waiting, some good and some bad.

When I first ended up in this inner tube I panicked. I fought against the river, exhausting myself against its current. I wanted out because I wasn’t equipped for the journey. But as much as I screamed and pleaded with God about my inadequacies He did not stop the inner tube. Everytime I hit a rock and sprung a leak I tried to use it as evidence to God that I was not equipped. But he covered the hole and asked me to keep floating and trusting in Him.

I am at a point where I have embraced and made friends with the river. The river has calm waters and the river has rapids. But the river is ever flowing, carrying me somewhere new.

Greek philosopher Heraclitus said ”No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.”

I could spend time breaking this down for you in terms of my life, but I feel like it just needs to simmer in your mind and my time is meant for more biblical things…

Mark 14:38 ”Keep watching and praying, so that you will not come into temptation; the Spirit is willing but the flesh is weak.”

I have been really processing these words. The spirit is willing, but the flesh is weak. It is such a simple sentence yet oddly profound.

This sentence came from the mouth of Jesus after He had instructed His disciples to keep watch while He went to pray before His arrest. When He returned and found them sleeping you can hear almost a tone of exasperation ”Simon, are you asleep? Could you not keep watch for one hour? Keep watching and praying, so that you will not come into temptation; the Spirit is willing but the flesh is weak.”

This verse summarizes me very well this week. My spirit longs to be used by God in big ways. I desire a thriving and effective walk with the Lord. My spirit is oh so willing.

But my flesh is also so weak. So incredibly weak.

This verse says a few key words at the beginning…”Watch and pray”. I realized this week that I am not doing nearly enough watching and praying these days. I let down my guard and allow the enemy to sneak in. The action it takes to be a follower of Christ is an every second, every minute, every hour action. It is not a passive role.

Christ’s words for His disciples could very much be the same words He has been laying on my heart: ”Could you not keep watch for one hour?” And in my laziness and my distractions I have allowed my spirit and my flesh engage in battle.

Galatians 5:16-17 ”But I say, walk by the Spirit and you will not carry out the desire of the flesh. For the desires of the flesh is against the Spirit, and the Spirit against the flesh, for these are in opposition to one another, in order to keep you from doing whatever you want.”

My desire this week is to end the battle, even if it be ever so brief, between the flesh and my spirit. That is a war that will continue to wage within us for our time here on earth. And it is a war we accidentally find ourselves in the middle of sometimes without intentionally enlisting, but it is a messy one nonetheless with lots of casualties.

This week my motto is: Walk by the Spirit, walk by the Spirit, walk by the Spirit.

When I am focusing on walking by the spirit my mind will be too engaged to focus on the things of the flesh.

I know I am mentioning some pretty meaty words and concepts in this week’s blog, If you ever have any questions about some of the ”Christian terms” I have been tossing at you please don’t hesitate to email me at jacobandleah@gmail.com

Thank you for listening to me ramble each week without complaining. You all are a very special bunch and my family is very blessed to have such a great support system.

Now off to bed! Much love,

Leah

After staring at this screen for a ridiculous amount of time the same sentence just keeps coming to mind: I am weary.

Special needs life is hard. It is obviously hard during the emergencies, the surgeries, the sickness. But it is also hard during the typical and mundane weeks. This life requires weird routines and schedules and there are certain locked in things into my everyday. For example, Malachi wakes up coughing every single morning. He has a hard time managing his secretions and doesn’t know how to clear his throat like you and I do. It takes him 1.5-2 hours of venting his tummy to get him in a safe place to keep down any food or meds I try to get in him. If I don’t follow this routine he vomits up anything I put in him. Then after the meds and food go in it requires at least another 45 minutes of holding him upright on my lap and periodically burping him like a baby to get him safe enough to leave the home. If we don’t get all of his burps out he seizes repeatedly.

Nighttime routines are even more mentally challenging. If you have ever had a newborn you can relate to that moment when you have rocked the baby to sleep and laid him down in the crib only to have him wake up two minutes later. That feeling of success being snatched away so quickly can be discouraging. Malachi has been pulling this trick since he was a baby but now he sets into a seizure instead of simply just waking up crying and needing to be soothed. It takes about 45 minutes to get him to sleep again and we play several rounds of this game each evening. Some nights we are in bed by 3am. Some nights 5:30am.

I am weary of the known routines. I am weary of worrying about the unknowns. Our life requires a level of acceptance and surrender that I am not always eager to offer up, especially this week. Which is why I am so weary.

We are spending a lot of time at home these days, going on drives often to get an opportunity to look at something other than our four walls. Malachi spent two afternoons at school and boy is he growing! I snapped this photo before he went in one day because I couldn’t believe how long his legs have grown.

This week little Levi starts his basketball league and I am excited to see how it goes. He is eager with anticipation, as is Malachi who is helping coach! He talks about it every day and seems very concerned about making sure he has “basketball shoes” haha. Finding shoes that fit his braces is harder than you would imagine!

Levi is still as inclusive as can be, always looking for ways to make Malachi giggle. He will crack a water bottle for him so he can hear the noise and say ”Does Malachi like that?” We always encourage him to ask Malachi questions and report his answers to us. Their relationship is so special. Levi continues to ask a lot of questions about Malachi that we knew would come one day- like why Malachi doesn’t walk and why he doesn’t talk. He seems pretty satisfied with our answers for now.

It seems hard to believe, but Levi turns FOUR next week! It is hard to remember a life without our Levi, and he has brought such joy to our family. I will save the sappy post for next week’s blog.

When I am weary it makes the lens I view the world just foggy enough to cause confusion and second-guessing in multiple areas. One of those is spiritually. We have been having such great God moments in our ministries over the last few weeks and the fruit God has been growing through them is such beautiful, vibrant fruit!

But as the fruit grows, the devil takes notice. And when you are weary those attacks have opportunities to find gaps in the armor.

This week I have allowed myself to be wounded, which I am ashamed to admit. And the mental mind game that has created has consumed me. When that happens there is no better solution than digging into the word of God. I spent some time in the book of James this week and as I read the Lord spoke to my heart.

James 3:13-17 ”Who is wise and understanding among you? Let them show it by their good life, by deeds done in the humility that comes from wisdom. But if you harbor bitter envy and selfish ambition in your hearts, do not boast about it or deny the truth. Such “wisdom” does not come down from heaven but is earthly, unspiritual, demonic. For where you have envy and selfish ambition, there you will find disorder and every evil practice. But the wisdom that comes from heaven is first of all pure; then peace loving, considerate, submissive, full of mercy and good fruit, impartial and sincere. Peacemakers who sow in peace reap a harvest of righteousness.”

Oh, how I crave that godly wisdom from heaven!

In my weariness this week I watched my pride and my anger flare as I filtered it through my earthly wisdom. But godly wisdom is full of humility, love, and mercy. It goes against our nature and requires us to become vessels for Christ to work through.

I don’t know if any of you also needed to hear this verse this week and be reminded that God calls us to be peacemakers, as hard as that can sometimes be.

May we all continue to pursue godly wisdom in our daily walk and feel the power of Christ in our moments of humility. And please pray for an easy, healthy week for the Carroll boys. Momma needs sleep, but even more I need some mental and emotional rest.

Much love,

Leah

So sorry for the late post this week! I kept trying to write it last night but my brain wasn’t clear enough to formulate words. Right now there isn’t much of a day/night differential and we are working with fragments of sleep.

We have officially dropped a seizure med from Malachi’s regiment! This is a very rare thing in our world and something that warrants celebration. After a painfully slow titration we were finally able to stop the medication last Tuesday. We did have some breath-through seizures but he is down to only having at most 4 a day, and the ones he is having are so much more mild. He is still having nighttime seizures into the pillow but even those seem to be less aggressive than a week ago.

Almost immediately we saw Malachi’s personality come back. He started acting goofy again, something we haven’t seen much of since pre-surgery/liver failure in late July. His eyesight has improved dramatically and he has been more vocal. He is also trying to hold himself up more.

There is always a delicate line we waver on as special needs parents. Yes, I could continue to fiddle with medications and reduce his seizures a bit more. But in doing so I also “lose” my Malachi and his beautiful personality and joy. So we choose which sacrifices to make on his behalf, allowing his quality of life to drive our decision making. I catch myself second guessing nearly every decision that we make in this arena but in the end I see such happiness in his eyes encouraging us to continue on the path we are on.

Along with these amazing changes that we are seeing we are also seeing so. many. opinions. Malachi has an opinion about EVERYTHING. Usually we give him three options to choose from and he settles for one. But this weekend it was his turn to choose the game for family game night and it took us 8 attempts to get to the one he had in his head that he wanted to play. We finally said ”Sorry” and he signed YES YES YES!

He also got to go up the road for a movie date with the neighbor girls. One of the older girls narrated Star Wars to him; he will get to go back up for the second half of the movie soon. I think he was more excited about getting to go over there by himself than the actual movie, but having those opportunities and friendships for him is such a blessing.

I am still not sleeping much these days, so we didn’t get too adventurous this week. I spent the time at home continuing Levi’s potty training which keeps me ridiculously busy. That boy sure can pee….like 53 times a day. But his pure joy each time he successfully uses the restroom is so sweet to see.

Tonight we held our first annual ”Holy Ghost Wiener Roast” for our youth group and their families with the help of our very kind friends that own a farm. Levi’s anticipation for the event was so intense he could barely sleep. He has become so social and sees all of the teenagers as his own personal friends.

And Malachi is always game for a hayride and some time on the playground with friends. He loves to soak in the sounds, smells, and noises!

The holiday season is officially beginning and each year I find myself evaluating what it will look like for our family. It is so incredibly easy to let society dictate what our holidays focus on and look like. On that token, I heard a term this week and it has really pricked my brain.

Passive Participation

If I am not being watchful and intentional I notice that we very quickly become passive participators in the world. And as harmless as passive participation may seem, it still makes us look a whole lot like the world we are not supposed to resemble.

As Levi gets older I find myself questioning my parenting choices on simple matters like Halloween. There is nothing inherently wrong with dressing up in costumes. There is nothing wrong with desiring free candy. But the Holy Spirit tells me that our family is supposed to look different from the world and nudges me that this an easy way to teach my boys about unfruitful things and the temptation to passively participate.

Ephesians 5:6-11

See that no one deceives you with empty words, for because of these things the wrath of God comes upon the sons of disobedience. Therefore do not become partners with them; for you were once darkness, but now you are light in the Lord; walk as children of light (for the fruit of the light consists in all goodness, righteousness, and truth), as you try to learn what is pleasing to the Lord.  Do not participate in the useless deeds of darkness, but instead even expose them; 

I believe so strongly that the devil is very hard at work during the holiday season, trying to get us to believe that the we are the center of the world. He shines a spotlight on our selfishness and whispers in our ear that this is ”tradition”. My heart desires so much to teach my children to spot those moments where we want to become ”partners with” the world like the verse mentions and instead ask what God wants us to do. Even when that means He calls us to be counter cultural.

I am not by any means condemning or judging any decisions you may make for your family! The Holy Spirit can speak differently to each of us, and I am not going to assume that the things He presses firmly on my heart are also being pressed on yours.

My desire in writing this is to encourage you to self evaluate and find the areas of your life that you have become a passive participant. Whether it be a habit you have convinced yourself is harmless, an activity that you participate in without a second thought, a friendship you continue to cling to…anything that produces unfruitful moments in your life or anything that encourages you to pursue paths that might be shadowed because their aren’t fully in the Light.

Spot them, name them, and replace them. Become intentional in your pursuit for the will of God in your life and your family.

For our family that includes questioning things the world tells me are traditions, rites of passage, and important. Holding them up to the Word of God and asking God specifically what He is calling us to do. What a special and serious privilege it is to raise children to be sensitive to the Holy Spirit. And oh how thankful I am for the grace of God when I mess up in this role!

Much love,

Leah