Wood & Earthenware

I want to start this blog off by sharing some updates on my sweet Malachi.

After Malachi’s recent procedure we have had to start some new daily rituals, many of which are not pleasant. He has a cough assist machine that we are supposed to use each morning after a breathing treatment with a nebulizer, and it truly looks like a torture device. It has a mask that fits over the area right under his eyes all the way to his chin and you have to press it on hard enough to suction to his face.

Then when the machine starts it waits for him to breathe in and shoots air down into his lungs. On the exhale it pulsate suctions to bring things up from the lungs and out. Malachi absolutely hates this machine, and therefore I hate the machine. But we do notice a difference with his breathing when we use it and we have been educated about the long term benefits to daily use.

And this leads us to one of the hardest parts of parenting medically complex children. We are often expected and required to do painful things to our children to help keep them alive. We have to hold them down for catheterizations and blood draws. We have to distract during IV placements and shots. When Malachi was a baby I had to give him shots twice a day for several months. We drive them to the surgery days, we change them into the hospital gowns, and we smile and try to reassure them that everything is okay. But inside my heart is crinkling with pain and a strong desire to take their hurt away.

Each morning when I do these new breathing regiments Malachi signs no with his mouth. And each morning we work together to try and build our relationship through the hard things. I wait for him to sign to me that he is ready before I put the mask on his face and we celebrate together each day when he finishes the treatment. I am so proud of his bravery and his understanding.

But I have to admit that this is creating some angst in me. I have to look away in guilt from his panicky eyes as the machine does what it is designed to do. When I look at my hands holding the mask to his face and inflicting such a scary thing on him I am showered in this strange guilt. My mind argues with itself, the emotional side of me yelling STOP and the logistical side encouraging me to keep going.

But Malachi never holds it against me and we both relish the sweet cuddles and celebratory dance after.

This boy has such a hard life, but he continues to smile and shine the joy of the Lord.

Malachi doesn’t handle weather changes very well, and particularly when seasonal allergies hit. It is making him vomit in the mornings when we don’t use the cough assist machine and keeping his seizure meds down was a challenge this week.

Levi also seems to be struggling with allergies and his breathing has gotten much louder at night. I called his surgeons in Cincinnati to schedule his surgery with them in June and mentioned we may need to talk about removing his tonsils and adenoids like we discussed last time. This would involve an inpatient admission which I would love to avoid, but I am worried his airway isn’t large enough to continue doing nothing. He is waking himself up several times at night due to his noisy breathing.

Levi’s glasses came in this week and I have to say that he looks awfully cute in them. Today at lunch he said ”I have glasses like my daddy!”

Jake and I have been planning a pretty elaborate overnight retreat over the last several months for our youth group and Friday was the day! As we continued to plan I felt such a peace from God over the details and such a clear direction for the lessons we were hoping they would learn.

We ran an underground church simulation at a local church camp facility for them to help them understand what a privilege it is to worship God freely. They had to hold several secret Bible studies and find the missionaries assigned to their group. They had to try to defend their faith to someone who didn’t believe in God. A portion of it tested their ability to “convert” a secret policeman (a church member playing the role) by walking them through the gospel. And as the final task they had to be led through the woods to the secret church, a chapel in the woods where we held a worship service and had a guest speaker share.

Watching kids fall in love with Jesus is one of my favorite things to witness. It makes me reflect on my own walk with God and flashback to some of the pivotal God moments I experienced at their age. This particular group of teens is very clearly being sanctified and set apart to do some mighty things in their lives. They love God without hesitation and many of them are cultivating a faith that I am praying the devil won’t be able to shake.

2 Timothy 2:20-21 ”Now in a large house there are not only gold and silver vessels, but also vessels of wood and earthenware, and some to honor and some to dishonor. Therefore, if anyone cleanses himself from these things, he will be a vessel for honor, sanctified, useful to the Master, prepared for every good work.”

There are many times when I do not feel qualified to share my faith with others. I feel like an ordinary vessel of wood or earthenware instead of a gold or silver one. But even the ordinary vessels can strive for sanctification (separation from sin and being set apart to serve God) and do the work of God.

Don’t let the devil allow you to believe that you are not qualified enough to talk to others about Jesus.

1 Corinthians 3:5-7 ”What then is Apollos? And what is Paul? Servants through whom you believed, even as the Lord gave opportunity to each one. I planted, Apollos watered, but God was causing the growth. So then neither the one who plants nor the one who waters is anything, but God who causes the growth.”

We are all called to plant seeds of faith everywhere we go, and we are called to water seeds that others have planted. But the glory of the growth rests on God. And when I remember that it makes the faith journey- the pursuit of God- in someone else such a beautiful thing to witness.

Have a blessed week!

Leah

Unstained and Pattern Free

This has been a picture taking week, so I will let those drive the blog tonight!

Today is Easter Sunday! Being on staff at a church, Sunday mornings can get busy. But this morning we were able to snap a quick photo!

This month marks year 10 of being youth directors at our church. Just as a re-cap, Jake is a math teacher and I was a special education teacher…we never expected to be doing ministry part time…let alone for ten years. Ten years ago a few people from the church showed up on our porch and asked us to consider becoming the youth directors at our church. After praying about it we accepted the position and here we still are.

Each year Jake and I spend time in prayer about whether or not God desires for us to stay in that position. And each and every year He makes it clear that we are right where He wants us to be. It continues to be challenging with our unique circumstances but being able to walk alongside our teenagers as they develop a walk with God is such an honor.

Looking back I can see times where we thought we had it all figured out, and God refined us even more through our ignorance and our pride. Being in this role has brought a level of accountability in my walk with the Lord and I am thankful God led us to where we are. Watching kids fall in love with God has been such a faith building thing for me too and we genuinely love studying the Word with them each week.

Alright, now let’s talk about these wild boys.

Both Levi and Malachi have hippotherapy sessions each Monday with a wonderful physical therapist. She saw a post about our friends exotic animal farm and decided to make a trip happen, inviting us along for the fun. I had Jake drive the little truck over so I would be able to get Malachi around without too much of a backache later.

I could post about 30 more amazing photos but then I would be ”that mom” in your eyes so I will refrain haha.

The day was so much fun for both boys but it also served as a reminder to me that the older and larger Malachi gets the more difficult it will be to give him these experiences safely. I find myself wavering between living in the moment and mourning over the future. Inclusion will always be possible and something we prioritize, but the level of inclusion will inevitably have to change as he grows and I am not sure I am ready to process that.

So for now we load him on a camel. We carry him across fields. We sit on milk stools. And we try to make him feel like the 9 year old that he is.

Malachi has a difficult time when he is outside and there are multiple senses being required. He especially has a hard time in sun and in wind, and unfortunately our farm visit had a blend of both. When that happens he shuts down a bit in a protective manner (see the camel photo above as well as the Easter photo), but he does this so he can fully mentally experience what is happening.

In fact, here is a stark contrast to help you understand a bit.

Earlier this week Malachi played with some of his favorite friends right after the sun set. The temperature was comfortable, and there was no wind or sun to distract his senses. And this was the result.

Just pure 9 year old joy! There are so many factors that can “distract” Malachi’s body, but he is capable of so many things.

But back to the farm visit. One of his favorite parts of the day was driving in the little truck and beeping the horn. And just look at those freckles popping out from the sun that day. Sweet boy.

One of the unforseen joys from the day was the dogs sniffing him all over after we returned home, trying to figure out the new animal smells.

So we have Malachi that struggles being outside when the elements are extreme. And then there is Levi who never wants to go inside.

We spend a lot of time on the playground when the sky is overcast, trying to accommodate both boys! I am continually thankful for a playground at the house to help me be a ”typical mom” but still be close to home base.

Levi is really, really entertaining these days and says so many fun things. This week we have been ready the Holy Week book from the Baby Believer series and we got to this picture:

I asked Levi, ”What is Jesus doing to His friend’s foot in this picture that is so nice?”

And Levi replied, ”Cooking it.”

Oh boy. There are so many humbling moments within parenting.

If you have been reading the blog over the last 9 years you will know that Jake and I are a little unconventional when it comes to holidays. And admittedly we aren’t ever sure what we want each one to look like. Due to surgeries, hospitalizations, and ICU stays we haven’t always had the luxury of planning things out.

But I do know that I want each holiday to be an opportunity for them to live out their faith and think of others before self.

Somehow every single holiday in America has been rearranged to involve receiving things. Yes, there are other elements and takeaways sprinkled in but there seems to always be the underlying focus of self. While I don’t feel that holidays are inherently bad I do feel that they have the potential to create an inward look instead of an outward one.

Please know that my kids are well taken care of, spoiled with hundreds of toys, and frequently get and eat candy. They are not deprived of these things. And we participate in things like church egg hunts and we choose and decorate a Christmas tree. But we don’t have many traditions in our home for these holidays as we want to leave room for God to create the framework for those.

There are two specific scriptures that play often in my head around the holidays. The first one is Romans 12:2 ”Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.” Let me just stop right there and note that Romans 12 is an amazing chapter. If you need a good, thought provoking read this week I would highly recommend spending some time with Romans 12 and a highlighter.

There are several words that I am drawn to in this particular verse, but tonight as I read it I keep settling on the word ”renewing”. This word reminds me that the process of sanctification isn’t a one time deal. It is a continual thing that we have to prioritize and welcome into our lives on a daily basis, allowing God to transform and renew us.

But the other phrase I tend to get focused on is ”the pattern of this world”. What are the patterns of this world? Have you ever stopped to process what patterns of the world exist in your life?

For me, holidays are a prime example of those patterns. They are special days that originally were built on very wonderful principles and we have come in and create a pattern to lay overtop of those. And we look at the person next to us to make sure out pattern is similar to theirs.

WE create the pattern based on others instead of allowing God to guide us, stitch by stitch.

Read the final line of that verse: ”Then you will be able to test and approve that God’s will is- his good, pleasing, and perfect will.”

When we are busy focusing on patterns we can allow ourselves to become distracted from hearing the prompts of God. I know myself pretty well, and I recognize my weakness in this area. I can get focused on something and somehow remove God from the process as I take over. Because that is my specific nature and weakness this is something I am trying to stay sensitive to.

I would never be so prideful to assume that you all will share these same convictions, and I hope you are able to see my heart and know that these words are ones of self reflection rather than judgment.

The second verse that often plays in my mind during holidays is James 1:27 ”Pure and undefiled religion in the sight of our God and Father is this: to visit orphans and widows in their distress, and to keep oneself unstained by the world.”

Ahh I could spend so much time on this verse and go so many different directions. Focus, Leah.

This verse reminds me that religion has the potential to become impure and defiled. And when I take time to really reflect on that I can spot times in my own life that I allowed my religion to drift this direction.

But for tonight I want to focus on the final line, ”to keep oneself unstained by the world.”

This. This is the verse. This is the one that drives all of my hesitancies and challenges all my traditions.

If we are called to keep ourselves unstained by the world, but also called to be in this world, are we not being given an impossible task? This is where the grace of God comes in!

But I find myself often questioning how hard I am attempting to keep myself unstained by the world. If I am wearing a white shirt and I desire to keep it unstained, I will avoid putting my hands on all potential causes for stains. It doesn’t mean I won’t ever leave my home or enter an environment with potentially messy things. But instead when I enter ”the world” I will be watchful and cautious, evaluating each things I put my hands to.

So I guess that is the phase we are in with holidays. We are cautious, trying to decide which traditions honor the Lord and which traditions feed self worship.

I am sharing this final thought with you as a testimony, not as a brag moment so please read this knowing the motives of my heart in sharing this are pure.

This year for Easter we talked to the boys about an orphanage in Uganda that was trying to raise money for an Easter dinner for the kids. We talked about what it means to be an orphan and talked about what Jesus would do for those children. Levi was captivated. The concept of not having a mommy or daddy stretched his mind, but then the concept of not having food took it to mind-blowing status. We decided as a family to take the money we could have spent on an Easter basket, candy, toys, or new church shoes and sent the money to the orphanage.

Levi has been thrilled all day talking about them getting to eat a nice dinner. And then my phone dinged and much to my surprise we received a message from the orphanage. They had sent photos from their Easter dinner, full of smiling children with full plates and full bellies. We sat the boys down and flipped through each photo and I watched the light dance in Levi’s eyes as he recognized the joy and power of being the hands and feet of Jesus. And I listened to the happy squeal from Malachi as we described the faces of the children holding their plates.

I don’t know that I am getting this parenting thing right. And I don’t know that I am living out these verses in the way I truly desire to. But I feel this overwhelming call to do my best to keep my family unstained and un-patterned by this world.

This week I will personally be evaluating the ways I have allowed myself to become stained. It is rarely an intentional process, but rather one that happens when we take our eyes off of Christ in one area of our lives and wander away from the Vine for a moment.

But the good news is that the Easter holiday reminds us that Christ shed blood for our many, many sins. The ugly sins, the little sins, the embarrassing sins, and the shameful ones. Ours stains can be washed by the blood of the Lamb.

Happy Easter and may God bless you,

Leah

Accept Their Lot

This week we had to stay close to home base again due to Malachi’s need for frequent diaper changes and medical supplies. I acknowledge that might be too much information, but it is something I never really thought about prior to having a special needs child so I assume you haven’t either. Sometimes the outings just aren’t worth the incredible amount of prep work and unknowns. I am very eager to give him his last dose of one of the antibiotics tomorrow and hope that will make a difference with his stomach upset.

We did venture out a few times this week. Jake’s high school soccer team had a local game so I loaded up the boys to go watch. I let Malachi choose which dog would get to go with us for a bit of training and he chose Shiloh with his signs. I told him he was in charge of making sure Shiloh stayed by his side for the game and he took his job very seriously.

Levi picked out his glasses and they will be ready for pick up in a few days. I am still trying to figure out how to sell him on the idea…he is pretty resistant to wearing them. But I have to say, he looks so cute in them!

Levi is four years old now and wants to be very busy. Every morning he asks me ”what are we doing today?” And when we are going through seasons of needing to stay home he goes a bit stir crazy.

Earlier this week he asked me what our plans were for the next day and I told him some friends were coming over for a Bible study. Later that night I found this sweet pile of clothes he had set out so he would be ready for his friends when he woke up. I don’t know if all four year olds do this, but his foresight to pick out even his socks was impressive to me.

A few more fun snapshots from our week…

I have to laugh out loud when I look at the last two pictures. In the first one there is a beautiful stack of towels folded neatly on the chair in the background. It gives off the illusion I have it all together. But then the second one hits and the giant pile of clothes that are still waiting to be folded (after 2 days) is a more accurate reflection of Carroll land.

It is also an accurate reflection of the amount of laundry we are burning through on these stinkin’ antibiotics!

Tonight I am weary. And I am cranky. And I am feeling hypocritical when I think about writing you a devotional thought, as my heart and mind are at war.

In full transparency, this week has been a very hard one on a psychological level. The medical routines I am running are dictating our daily schedule and by the end of the day I can’t point to a lot of things that we achieved with our 24 hours (aside from keeping everyone alive). Sleep is extremely limited right now, and the 3-5 hours I am getting are broken up by the medical needs of both kids. When my eyes open each morning a feeling of dread overcomes me as I know the rest I received wasn’t quite enough to sustain me.

I get stuck in a mood of dissatisfaction. Have you ever been there before? I could make you a giant list in ten seconds or less of all the things I am dissatisfied with in my life right now.

But as I have been sitting here staring at this screen, God has yet again come through and placed a very specific scripture on my heart. I know this concept may feel foreign to you, so let me explain a bit.

I have been praying ”God if there is something I need to say here, please make it known.” I never sit down to write these with a specific direction to go. I simply stare at the screen and ask God to start writing.

And tonight when I prayed that prayer, the words ”To accept your lot in life is indeed a gift from God” flowed into my brain. It didn’t sound like a scripture, but rather a famous quote from someone like Ben Franklin or some other profound mind so I typed it into google and sure enough, there is was in Ecclesiastes! God is always so gracious to me in providing me with the bread of life when I need it the most.

I am fairly confident it is more for me than for you this evening, but I am going to trust God can make it mutually beneficial for both of us.

Ecclesiastes 5:18-20 ”This is what I have observed to be good: that it is appropriate for a person to eat, to drink and to find satisfaction in their toilsome labor under the sun during the few days of life God has given them—for this is their lot. Moreover, when God gives someone wealth and possessions, and the ability to enjoy them, to accept their lot and be happy in their toil—this is a gift of God. They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart.”

My prayer this week is that God grants me eyes to find satisfaction in my toilsome labor under the sun. I pray that He continues to provide contentment to me within my lot in life, that I embrace and accept that lot instead of clinging to the dissatisfaction that my eyes are drawn to.

And that last verse is a prayer itself: “They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart.”

Because GOD keeps them occupied with gladness of heart. What a reminder to me that the heart contentment I long for right now is created, grown, and multiplied within the hands of God.

Please pray for our family this week, that we experience a bit of relief from upset tummy-aches, seizures, and lots of other small issues that stem from these things. Pray for a rejuvenating dose of normalcy for the boys, so that they can reset their routines and we can all get some much needed rest.

Much love,

Leah

Shaking Arms

Spring break for the win! Jake was able to spend all week with us and we had such a refreshing week filled with family time. Truthfully, having him home this week was such a gift from God as we have been dealing with some sleepless nights.

Malachi started a 14 day round of antibiotic to clear up the current lung bacteria that the cultures showed he was brewing. In addition to that we started his new antibiotic routine to prevent new infections from happening. Just one of these alone would have been tough on Malachi’s gut, but both at the same time has created a bit of…well…chaos.

His tummy churns all night long, waking him up from the discomfort and the seizures that it brings. He is on probiotics, but we really just have to wait this process out and hope that finishing one antibiotic will bring him some relief from the tummy issues.

While I want to be annoyed with these meds I can’t justify it as they are doing their job incredibly well. Malachi’s breathing has been dramatically better, with his oxygen saturations hanging around 96. The best word to describe his breathing is “comfortable” and already we are seeing an improvement in his quality of life. Aside from the increase in nighttime seizures that are likely due to tummy aches, we are seeing a decrease in his daytime seizures in both frequency and intensity.

We weren’t able to leave the house very much this week due to the chaos and the need for medical supplies so we spent time playing games and playing on the playground!

Levi is changing by the day. I could tell you story after story of the funny things he has been coming up with lately. His words and sentence structure have been growing a lot lately and watching his personality develop is such a treasure.

He has such a kind heart and goes out of his way to thank me for things often. This week out of the blue he said: ”Mom? Thanks for being my mom.” The more time I spend around him the more resolute I am to preserve his sensitive spirit and kind heart. I feel so strongly that God has some big things in store for him.

The photos from this collage were all taken the same week each year, starting the year he was born. Jake and I got a good laugh from his 3 year old photo (the green sleeves), forgetting how well his caloric needs were being met at the time haha.

Levi is now only taking tube feeds at nighttime and he eats table foods like a monster during the daytime. He has come such a long way.

Most days I rest in a state of denial, ignoring the challenges our situation can present. I know they are there but it is much easier to not think about them. I had some time this week to tackle the time sensitive items on my to-do list, many of which involve medical paperwork and medical phone calls.

When I am working on those things I have to face reality, so those tasks often take me to a dark place. Which is probably why I ignore them until I absolutely have to. I have to verbalize and write out diagnoses, needs, unmet milestones and each time I have to summarize my child using only negatives it feeds a bitter root that is buried inside. I understand why those hoops require the summary of the bad. Their tangible needs are a result of those differences, so proof is required. But summarizing my child using only the things they can’t do is just so unnatural.

This week another special needs mom shared this photo and it has imprinted itself on my brain.

If you aren’t familiar with the context, this photo is a representation of a story we read in Exodus 17.

Joshua did just as Moses told him, and fought against Amalek; and Moses, Aaron, and Hur went up to the top of the hill. So it came about, when Moses held his hand up, that Israel prevailed; but when he let his hand down, Amalek prevailed. And Moses’ hands were heavy. So they took a stone and put it under him, and he sat on it; and Aaron and Hur supported his hands, one on one side and one on the other. So his hands were steady until the sun set. And Joshua defeated Amalek and his people with the edge of the sword.

My initial thoughts with the story have always been focused on the friendship represented here, and what a beautiful example of what it means to bear another’s burdens. And I could write a thorough devotional on what that looks like in the Carroll journey.

This may be a topic for another day, as I share the loneliness the special needs road can bring. We have had so many teams of ”arm holders” cycle through our lives at different times. But inevitably the weight of our lives grows too heavy for others as well and we find ourselves alone in the mundane with shaky arms yet again.

But for some reason this week the longer I have stared at the photo the more questions I have.

Who was this display of God’s power for? Moses? His friends? The Israelite army below? Or was it meant to simply be a mutually beneficial moment for all?

Why did God call Moses to a task that he knew he couldn’t physically sustain? Why didn’t he require something easier of Moses?

So many faith questions have been brewing as I look at this photo and find comparisons with my everyday. Why has God called me to a life that is so physically and mentally exhausting? Every time I open my eyes I find myself facing a war that I am not qualified or equipped to fight. There are so many factors that are beyond my control with both of my children.

God didn’t call Moses to fight and he didn’t call him to step on the battlefield. God called Moses to be an instrument, a display of His mighty hand and His power. He called Moses to simply raise His hands in surrender to God and watch God fight the battle for Him.

Maybe I am not meant to ”fix” my children. Maybe I am just meant to be an window through which the world can see God’s control over their lives.

But even when we raise our hands and surrender the battle to the Lord our arms can grow weary. And I think that is something we don’t talk about enough in Christian circles. Almost as if we admit our weariness that somehow is perceived as lowering our measure of faith.

Why do we make it so hard to receive help and support? Egos can be a nasty thing. And I am speaking to myself here.

Let’s be honest- sometimes the callings on our lives bring about exhaustion and a stretching beyond our capabilities. I can just imagine the emotions of Moses in that moment, lowering his hands out of exhaustion and watching in desperation as his army fell in battle. The pressure that came with that calling was immense. But again, God called for arms held up in surrender- trusting that God would provide the victory.

As a special needs mom there are so many battles that I can’t fight. I can’t battle seizures. I can’t battle complex airways. I can’t battle cerebral palsy. I often keep my hands busy, trying unsuccessfully to create my own victories. Can any of you relate with this?

But this week I am reminded that God already knows the moment our arms will begin to shake. He already knows that we can’t do these tasks apart from Him. So instead of focusing on the negatives of the situation we have to choose to believe that this moment is a faith growing moment for someone.

Sometimes our glowing inadequacies and God’s work through them are meant to encourage our faith and something they are meant to encourage the faith of those looking in. Sometimes our weak moments are opportunities for others to come alongside of us and get a different perspective.

So if you are like me and you find your arms shaking under the calling God has placed on you, be encouraged that it is in your weakness that God is teaching and refining both you and others. So as uncomfortable as you may be, trust that God is still working through you.

I am very tired today. I am not even sure that all those thoughts made any sense, but I am going to trust that the Holy Spirit can connect the dot with that jumbled devotional and make it something meaningful to your heart.

Much love,

Leah

Renewed Inwardly

I write this blog for many reasons, but one of the primary ones is that it allows me (maybe ”forces” is the better word choice here) to process a lot of thoughts and emotions that I tend to stuff down out of my psyche. This week I have been avoiding processing a lot of things, so when I open the page to start typing I have to take a deep breath and break the walls I have built this week to separate the hard stuff from the everyday.

As you know, Malachi headed to the operating room this week for a bronchoscopy to look at his airway and lungs. I will do a quick summary for you of the findings…I try to include all the medical terminology and jargon in case other parents researching these terms need some insight for their own child.

Bad news #1- Prior to the procedure the pulmonologist suspected he was aspirating, and it was confirmed that he is silently aspirating his secretions. Aspirating essentially means that they are going down the wrong tube and finding their way into his lungs. Lungs are often not able to process the foreign bodies and infections can occur. Malachi’s cultures did in fact show that he has a current lung infection that is going to be treated with 14 days on amoxicillin. We are thinking that this may be one of the causes for the frequent random fevers he has been having.

This also revealed a new diagnosis through his CT scan called bronchiectasis, which is scarring of the lungs due to frequent aspiration. Malachi’s scarring is on the back side of his lungs, which makes sense due to the way he is often positioned in a slight recline.

Bad news #2- Malachi has a floppy trachea (called tracheomalacia). This may sound familiar as Levi also had this condition, but his has improved dramatically. Unfortunately Malachi’s is worsening as the years go by. When he breathes out he is having a 50% collapse in his upper airway.

Bad news #3- Malachi has bronchomalacia, so same concept but in his lungs. When he is breathing out the cartilage is flopping over the bronchi into the lungs by about 75%-80%, trapping anything that is finding its way into the lungs from being able to get out. So you and I can have a ”productive cough” and bring stuff out of our lungs when we are sick or congested. Malachi doesn’t have the ability to do that well. And then if he was successful at getting it out of the lungs it would struggle to get through the windpipe due to bad news #2.

The surgeon was able to clean his lungs while he was in there and test the samples, and Malachi’s breathing was EXCELLENT for the few days after the procedure. He even had an oxygen saturation of 100 post op at one point, which we haven’t seen for years.

So in summary, we know that foreign substances are getting into Malachi’s lungs and the chances of him getting them out are slim. So what do we do?

We treat on the assumption that he will have a lifetime full of infections and start preventative measures. Starting this week Malachi is on azithromycin (same meds as a Z pack) every Monday, Wednesday, and Friday for life. This is in addition to the 14 day antibiotic he started for the current infection. He will also be getting a shot that prevents against several strands of pneumonia.

Okay, so let’s go from medical jargon to mommy jargon.

Remember that switch I talked about last week? I superglued it into medical mom mode, trying to completely detach from the emotional side for the day. And I was successful…until I wasn’t haha.

When the time came to send Malachi back with the anesthesia team he was giggling and I was able to do the send off without shedding a tear. I kept my wits about me during the surgeon updates, and didn’t even think about crying through any of the parts that normally get me. I mean, we have done this 44(?) times now and have been through some really hard and really unknown outcome surgeries. A simple exploratory procedure like this one shouldn’t get me unraveled.

After the surgeon updated me I exhaled and sat down in a chair to wait for them to take me to recovery with Malachi. I watched the clock tick away and tick tick tick. Still no Malachi, and no updates. Aside from the surgeon updates no one else had given me updates on Malachi in the three hours since they took him from me and the procedure process from start to finish was estimated to be 1.5 hours (including prep and anesthesia). Typically I get a call when anesthesia and IV attempts are successful, when the surgeon starts and finishes, when Malachi leaves the operating room.

Three hours of silence.

I assumed he was in recovery since I had spoken with the surgeon. But as I processed the silence my imagination started wandering and I started to get a little panicky. After waiting a bit longer I couldn’t stand it any more and pushed the nurse call button. When she entered the room the emotion flood gates broke and I sobbed, trying to explain that I assumed this procedure would be like all the others and I would get updates and be able to join him in recovery as soon as possible.

She explained that due to Covid parents were no longer allowed in the recovery room, and this surprise piece of info made me panic even more. Malachi is not able to communicate verbally but I can read him like a book and figure out what his needs are based on his body language. The idea that he was back there potentially trying to convey something and no one could understand him tore my heart.

And then the mom guilt slipped into the picture. I had promised him he would get to listen to his favorite song the second he woke up. I had told him when he opened his eyes I would be by his side. I was mad at myself for making assumptions that this round would be just like the others.

I was also extremely disappointed in the hospital staff for not keeping me updated. I can’t help but wonder if Malachi was treated differently than other patients due to his differences. I don’t want to believe this is true, but I also fully believe that other parents would have been updated regularly had this been their first OR experience.

Malachi was finally wheeled back into the room and I was able to calm down. I snuggled him and then had to pop that switch right back into medical mom mode so I could get him out of there. Our day was delayed significantly and even though we arrived at our 7am scheduled time (for a 1.5 hour estimated procedure) we didn’t make it home until 4pm.

Malachi ran a high fever due to the lung intrusion but was back to his bubbly self after about 24 hours. The new medications are causing some pretty severe belly issues and creating lots of explosive crying from belly pain. I am also looking into the potential for more liver failure issues due to the new antibiotics being metabolized through the liver.

Little Levi had a very hard time with this procedure. As soon as he heard Malachi had to go to the hospital he burst out crying and physically clung to Malachi. The day before the procedure I heard him whispering to Malachi “Malachi, you should punch the doctor.”

As I put Levi to bed the night before he just sat silently with tears streaming down his face. His empathy for Malachi was so real in that moment and I spent some time snuggling Levi and praying with him for Malachi.

He was overjoyed to finally have Malachi back home. Their love for one another is just so special.

Ugh so much heavy stuff here. Let me take a commercial break and talk about some fun things from the week before we jump back to the hard things.

We spent the majority of our week enjoying the sunshine and getting some fresh air. The boys have been enjoying lots of rides on the little truck and playing with friends. Malachi has not been 100% due to all the medication changes, and it is weeks like this one that I am extra grateful for the ability to give him little bursts of fun but still remain close to home base for our medical needs.

Alright, back to the hard stuff.

It is incredibly rare for my hands to be empty. I typically have Malachi in them, and when he is not being held I am busy chasing Levi. So being in a hospital room for 3 hours with empty hands really messed with me. I struggle with anxiety (I wonder why haha) and have a tendency to self mutilate without realizing it by picking at my fingernails and the skin around them. The night before surgeries I always clip off all fingernails just in case and pack extra chapstick to keep me from biting my lip.

Passing that time is very, very hard to do. I used to think I could read a book or read the Bible but truthfully I am unable to focus well on anything. So I just have to let my thoughts run and pray that the time passes quickly. I spend a lot of time praying, but not in a consistent manner- more like a sporadic way when the anxiety starts to drown me.

It is hard on days like this one to even know what to pray for. I have a t-shirt that reads “Dear Jesus” then lists the whole alphabet and ends with ”Amen” and I truly feel like this is my prayer on surgery days. I don’t even know where to begin.

As I let my mind wander I couldn’t help but process that the rest of Malachi’s life will continue to be full of these procedures, waits, and bad news. Malachi’s body will only continue to decline without a miracle from God.

The amount of potential suffering that lies in wait for my son takes my breath away.

I found myself pouring my heart out to God and praying over Malachi’s death, and begging God that Malachi’s entrance into heaven would not be preceded by suffering. I love Malachi with all of my heart, and I treasure every minute, hour, and day I get to spend with him. But my mind wanders often to the potential ”lasts”.

I know I share this verse often, but this week its words soothe my heart.

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

Those initial words, ”Do not lose heart”. I have been evaluating what that process looks and feels like, and I have realized that this is a temptation often in my life, and especially on surgery days. It is allowing discouragement to take my eyes off of God and giving them the opportunity (and excuse) to focus on current reality.

When I keep reading that verse I can’t help but think about Malachi’s frail, scar covered body that continues to fail him over and over again. The medical community has created such amazing technology to preserve life, but it also allows a firsthand look at the ”wasting away” that this verse refers to. As Malachi ages and his medical conditions progress these words pop off the page at me. And it is easy to allow my focus to rest on the doom of those words and stop there. But we have to keep reading.

Yet inwardly we are being renewed day by day.”

So what does that process look like? It means that our bodies are designed to fail us. Malachi’s body will fail, my body will fail, and your body will fail. No one is exempt from this process. The words of this verse remind me that we are daily being renewed, and sustained, by God because He has more work for us to do on earth.

God will continue to renew Malachi day by day because He has more God honoring work for Malachi to accomplish. And when I fix my eyes on the unseen I remember that even the suffering that we may encounter, or our “light and momentary troubles” are being used by God in ways we cannot see.

I don’t know what lies ahead for Malachi. But I do know that regardless of the potential suffering leading up to it, the day that Malachi runs into the arms of Jesus will be the best day of his life. And that hope that I have in Christ keeps me choosing joy in spite of the hard days.

Please pray for our family as we enter new territory. Transitions into new medical routines is always challenging. We will be starting a new style of breathing treatment daily as well as trying to introduce several new medications into his system. That many changes can trigger his seizures and cause a lot of discomfort, as we are already starting to witness. Please pray that his body adjust quickly and that the benefits outweigh the complications.

Much love,

Leah

Crawling

I find myself eager to write the blog tonight, really needing to dump some emotions somewhere. It has been a busy week, full of good things and hard things.

It is sometimes difficult to explain the pendulum of being a special needs mother to others in a concise way. As I thought about our week I visually pictured a toggle switch so I whipped up a visual to help me explain.

First of all, let’s collectively laugh at the ”off” sticker in the middle. All of us moms can agree that we never rest in an off position as momma. In my days I often toggle between these two very different styles of mothering.

When the switch gets flipped to the Medical Mom Mode I become caretaker. It is not that I withhold love and cuddles in this mode, but my focus is more utility making sure needs are met and life is preserved. This mode takes an incredible amount of effort and focus. Medication doses, seizure activity, positioning, oxygen levels…it is a mode that I can’t afford to do half heartedly. Oftentimes the fun gets overshadowed by the necessary, so it becomes a dark place for both Malachi and I to rest in. And a boring mode for Levi. But I also can’t afford to let emotions cloud my thinking, so those get shut off to allow me to focus.

Then there is Typical Mom Mode. I am always keenly aware when I am in this mode, and it is a gift each and every time the switch gets to rest here. In this mode we get to pretend that medical issues don’t exist and just enjoy being a family. I would venture to say that each day has moments of this mode, but spending more than an hour or two in this mode is rare. Medical routines and feeding schedules require the switch to get toggled back over. And truthfully it is in this mode that the exhaustion of medical mom catches up with me, depleting my energy to do much with the boys. Adrenaline crash is such a real thing in our world.

This week I spent a lot of time in Medical Mom Mode. Malachi’s brain is severely damaged and one of the areas that sustained injury is the part that controls temperature regulation. This week has been filled with mysterious high fevers that appear out of nowhere and disappear after an hour or two. Normally I ride out these fevers and they eventually stop, but he is scheduled to go to the operating room on Wednesday for his bronchoscopy so I am a bit more nervous about waiting it out.

On Tuesday evening we got home from soccer practices and I fed Malachi. Within 10 minutes he zoomed from 98.6 degrees to nearly 102. His oxygen saturations dropped from 94 to 84 and his heart rate was around 170. He started visibly shaking, clearly in pain and the only thing I could think of that may have contributed to this sudden change was the fact that Malachi had not had a bowel movement in several days. I started to wonder if we were dealing with impacted stools so I packed a hospital bag and took him down to the Emergency Room at 1am. By the time we got there he was completely back to normal…no temperature, no oxygen issues, normal heart rate. I almost felt foolish being there but we went ahead and verified with x-rays that he was moderately backed up.

They sent us home with a clean out protocol, so the second half of our week kept us home and close to medical supplies and diapers. I will spare you the details from that process haha. Saturday night his random fever came and went and tonight it came back. Something is definitely irritating his system but it doesn’t seem to be a visible illness.

In situations like these it seems the switch gets jammed into medical mom mode and superglued there. Even in my sleep I am listening for seizures (worsen with fevers) and waking up to administer medications and check temperatures. When Malachi is uncomfortable I try to do anything in my power to keep him comfortable, and oftentimes that means holding him for hours and hours at night. I lose track of days and nights and psychologically that starts to mess with me. It has been a mentally and physically exhausting week.

But let’s talk about some fun things for a bit.

Our soccer ministry came to an end yesterday and it was such a fun final day. We set up some backdrops for parents to snap some photos and I snagged a few of the boys during our trial run. I had to bribe them to smile with some chocolate from the concession stand but the results were worth it.

The last six weeks has been such a refreshing thing for me as I had the opportunity to connect with so many amazing kids. We were able to talk to them about Jesus twice a week and teach them soccer. Watching them improve their skills and soak in truths about God energized me so much. I am going to be sensitive to not post group photos without parents permission, but I know this sweet girls momma won’t mind me sharing this one. Such precious souls!

Monday the boys had their annual appointments with the pediatrician. Because we are followed by so many specialists we don’t often have to go to the pediatrician, so most of these annual appointments are me filling her in on what each specialist is happy with and concerned with. She was pleasantly surprised with Levi’s progress in one year and Malachi’s ability to communicate.

Levi had to get a few shots and was not happy. When we got in the car I heard him mumbling to himself in the backseat and I asked him to repeat what he said. In a sulky voice he said ”Me ’bout punched that doctor.” Y’all, I have no idea where that came from. We don’t talk like that, but in his mind he was ready to start swinging.

Levi is so observant and has picked up on so much medical terminology. He often catches me off guard with his random knowledge, like the correct names for the tools the doctor uses. This week he saw me drawing up Malachi’s medicine and said ”Getting Malachi’s keppra?” Malachi takes 6-8 different medications and he can correctly identify 4 of them by name when I hold up the bottle. Ummm what?!? That isn’t something I have taught him so I was shocked when I tested him. Smart boy.

Malachi got a fancy new headrest cover for his wheelchair to complete the Spider-Man theme. He is very proud of it! We found an Etsy shop run by a high school girl and were thrilled to find one that was perfect for Malachi. If you are a special needs mom and want to check her out here is the link: https://www.etsy.com/shop/RockMyRide?ref=simple-shop-header-name&listing_id=1182145080

You can also spot our new family game in the background. Malachi absolutely loves this dart board and gets really into our friendly competition.

Now on to some reflection time. I haven’t had a chance to really script this beforehand so you all get the fresh cut version.

This week Levi said ”Mommy, look at this.” When I looked down he was crawling on the ground like a baby.

And I felt hot tears come to my eyes. I have been a mother for 9 years and it was the first time I witnessed a child of mind crawl like a baby.

Now Levi is four years old and walking, jumping, climbing, and scaring me on a daily basis with his adventure seeking. But here he was crawling, and so proud of himself for his ability to coordinate his body to do that action.

He jumped up, waiting for affirmation and I laughed through my tears and told him how proud I was of him. And then the feelings flooded in. Actually, they are flooding in right now as I type this.

The first wave of emotion is such joy. I flashed back, thinking about that little baby Levi hooked up to oxygen, his feeding tube, and a pulse oximeter 24/7 for the first few years. I remember watching him play on the floor and trying to make a plan for when he would start to crawl. But after months and months of waiting that developmental skill never came.

The second wave of emotion is such mourning over our loss of normal. A sadness that after 9 long years I am celebrating something that most parents get to celebrate a few months into the parenting gig. Our journey has been so, so hard. It has been riddled with disappointment and unmet milestones. And filled with specialists that are very skilled at using those unmet milestones to label, medicate, and reality check us. I actually detest milestones and the grief I allowed them to bring into my life.

The third wave of emotion is shame for even allowing emotion #2 to enter my psyche.

And the fourth wave of emotion is overwhelming thankfulness. I am so thankful for a miracle in Levi’s life. I am thankful that God granted us these seemingly insignificant glimpses of normal.

The truth is that I could choose either of these four emotions and settle into them. I could decide which reaction to stick with, and let it influence the moment. And I could find dozens of you that would justify whichever one of these I chose.

As Christians we are called to be different than the world. We are called to “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

We aren’t called to settle in the dark places our mind will inevitable be drawn to. Even when they are justified.

This week I was sitting on the couch with Levi and I noticed him studying our photo wall. He pointed at the large, stenciled words scattered in between the pictures and asked ”Mommy, what do those words say?”

It was the first time he has noticed the words so I read each one carefully to him…

“Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent…Think on these things.” (Taken from Philippians 4:8)

He intently listened to each word, trying to understand what they meant. I explained that we are called to focus on the good things that God does in our life instead of the bad. I asked him if he could think of a good thing God has done for us and he said ”Malachi amazing!”

Yes he is, buddy. Yes he is. Cue the ugly cry.

We kept the list going and talked about the good, and watching him reflect was such a reminder to me that wherever that toggle switch lands, whether I am in medical momma mode or typical momma mode, I am called to focus on the good, recognizing the gifts God places in those moments for me.

I don’t know what labels you could place on your toggle switch, but I want to challenge you to look for the good even when it gets flipped to the challenging position.

Please say a prayer for Malachi this week as we attempt a procedure on Wednesday. Pray that it is a fruitful endeavor and we get some answers onto whether or not he is aspirating.

Much love,

Leah

Faith Ownership

Daylight Savings is a thorn in the side of most special needs family, and definitely one of my least favorite things twice a year. We live by the clock, constantly monitoring medication schedules, feeding schedules, appointment schedules…you get the idea. When the clocks change life gets a bit bonkers as we try to level out to a new normal. I will be working for the next several weeks to slightly move medication routines a little at a time to be cohesive with the boy’s routines.

The boys had appointments with their pulmonologist this week, each for different diagnoses but it is so nice to be able to combine those appointments. Levi is still doing really, really well and specialists are continued to be surprised at his voice quality. Most children with his condition are unable to speak, or can only speak with a slight whisper. We can tell that his vocal cords are still paralyzed due to the minor rasp in his voice and the very slight stridor when he is active. But overall the doctor is very pleased with his progress. Levi’s main ENT and pulmonology specialists are in Cincinnati but we are also followed here locally so we have a point of contact for emergencies, hospital stays, medications, etc.

Total rabbit trail here…but 9 years ago I would have thought this was such a sweet picture. Now all I can see as I look at it is that invisible germs dancing on those steering wheels and the inner voice inside of me yelling ”get your finger out of your mouth!!!” But then I remember that after so many years of desiring with all my heart to push a child in a shopping cart, God has answered my prayers and given me a taste of normal…nasty germs and all. I am also laughing at this picture as I look like a neurotic mom who buys things in fours. And that may be true…but I will instead blame the weirdness on a buy one get one free sale on green beans and Nature Valley bars. Ahh rare glimpses into the unspoken mind of Leah.

Malachi’s appointment did not go as I had hoped. For the last 9 years we have oddly been able to avoid pulmonology for him. Even when Malachi was fighting for his life in the NICU, his lungs were shockingly strong. Recently I have noticed his oxygen saturations dipping and he has had shallow breathing, mainly right before bedtime. Our last two ER trips were due to this issue and we have been unable to find full blown pneumonia that we can point to as the cause. In an hour he can swing from an oxygen saturation of 94 (his baseline) down to 89. While this doesn’t send me into a panic, I am watching our safety window closing as 88 is the ER worthy number and typically the hopsital admission mark.

When they triaged Malachi at our appointment Wednesday he was having a hard time pulling a number higher than 89 and the nurse grew anxious. He did not look oxygen hungry or in distress but I understand her anxiety over his numbers. She went and got someone from the respiratory team to come in and they started to try to hook him up to the wall oxygen in the exam room. I knew if they did this they would likely try to send us on to the ER and I really did not want that to happen with Levi in tow. I had just medicated Malachi in the waiting room and I assumed that maybe his reflux was causing his shallow breathing. I tried some positional changes and he popped up a bit for them to feel comfortable.

When the pulmonologist came into the room he listened to Malachi’s lungs and said that they sound very wet. He has not been sick, so he believes this is a pretty good indication that Malachi is aspirating his saliva and secretions (meaning it is going down into his lungs and settling). The hard part with this issue is that there really isn’t a great treatment to stop him from aspirating. He already isn’t taking any food by mouth, and we can’t really make him stop salivating. So even if we did determine that there is fluid in there, we can’t do anything about it.

So if that is the case we need to start treating the potential bacteria that is getting into his lungs with a routine antibiotic. This is done often for patients with cystic fibrosis and other airway disorders so it isn’t an uncommon thing- but obviously one we would love to prolong as much as safely possible. In a week and a half Malachi will have a CT with contrast (dye) so they can see the anatomy of his lungs as they function. Then he will go directly into the operating room for a bronchoscopy so they can send a camera down into his lungs for a look as well as testing the fluid. Levi has had about two dozen of these but this will be Malachi’s first. They are relatively quick and painless but he does have to go under anesthesia, and they can often trigger an immune response after bringing on a fever.

As much as I loathe any and all procedures and surgeries for my children, I recognize that many serve a needed purpose and this is one of them. So I am in the momma mode of ”let’s just get this over with”. We need to get ahold of his oxygen needs before any sickness hits Malachi and gets too far beyond an easy repair.

We all three got sunburned on Thursday then snowed in on Saturday! The weather has been so wonky but fun. We had a much needed family day on Saturday, just soaking in the quiet time and taking turns trying to catch up on some sleep.

We are still wildly but wonderfully busy right now. This week we have had Bible studies at the church on Tuesday (kids soccer) and Wednesday (youth group) and at the house on Thursday (for women), Saturday (for men), and Sunday night (for the youth). We are still cooking for the teens, which always leaves me laughing. Tonight we had over 40 youth in the house! What a blessing….a chaotically wonderful blessing.

I think often about my boys and their individual walks with the Lord. Malachi carries a pure innocence that I sometimes envy. I truly believe he loves the Lord, and he loves to talk about spiritual things. He is very intelligent and has the capacity to listen and understand truths. I smile when I think about the joy Malachi’s life brings the Lord. And what a ”chosen instrument” he is.

1 Corinthians 1:27 ”But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.”

At face value this verse can sound offensive towards my Malachi, but you know my heart better than that. God has used what our human eyes see as ”foolish” and ”weak” to shame what we consider wise and strong. Seeing God work in Malachi’s life has reminded me of the mysterious ways of the Lord.

Then there is Levi. Sweet, wild Levi. We are very much like first time parents with him as the developmental stages he goes through are new to us. Each day I find myself in wonderment at some of the things he says and does, recognizing that he is a unique individual with a mind and will of his own.

I read a quote: ”Children don’t grow up to be Christians because of their Christian upbringing, but because God took their unregenerate heart, and made it alive in Christ.” -Angela Mitchell

I have been really challenged thinking about Levi’s walk with God and what that will look like. And one of the things that I keep settling back to is how much I desire to not manufacture that walk for him. There is something so beautiful and important about each of us on our own journey falling in love with Christ. As youth leaders we see firsthand a false confidence that ”coat tail” faith can give- teens relying on their parents faith as if it were their own, all while never truly experiencing God for themselves.

Levi is set up to be a coat tails kid as he is often at the church when the doors are open. He is our ministry sidekick and witnesses a whole lot of religion. But it doesn’t matter how many times he steps foot in church or how many Christian songs I play on the car radio- God will pursue him and he will have to open that door when the Holy Spirit knocks.

Now, this doesn’t absolve me from raising him in a Christ saturated home. And it doesn’t excuse me from opening the Word of God with him often to teach him what it says. The Bible is very clear about our responsibilities to train up a child. But it has activated this trust in God inside of me, remembering that I don’t have to drag my children to the throne of God….He is also their good Shepherd and when the time is right reveal Himself to Levi. When I look at Levi and remember that He is on a faith journey all of his own it brings me such happiness.

Levi’s testimony is already such a powerful one, and when I hear that beautiful, raspy voice that he “would never have” my heart warms thinking about those mysterious ways of God and what he has in store for my son.

My job as momma to these two amazing children is to continue to cultivate a life of faithfulness and allow the fruits that God grows in our lives to be a natural classroom in which my children can experience God for themselves. That they may ”taste and see that the Lord is good”, not because of something I taught them or a story that I told, but rather because they witnessed His immeasurable grace with their very own eyes.

Please continue to pray health over our family, and pray that we are wonderfully surprised by a good report from Malachi’s upcoming procedure.

Much love,

Leah

Grace Abounded

Today’s post is full of photos!

We live in a small, rural town in Tennessee but I am continually amazed by how wonderful this area is. Our friends own a farm a few miles down the road and have been adding some exotic animals to the mix: kangaroos, camels, llamas, emus, and so many more. This week they had a burst of baby goats, baby lambs, and baby puppies that needed to be bottle fed so I took the boys over to help.

When Malachi’s senses get overloaded he shuts his eyes so he can focus. Malachi loves animals and being able to get him close to them is such a special treat. Levi has no fear, so I have to keep my eyes on him…and the llamas continue to believe his hair is hay and chase around getting a lick in to test their theory.

Little Levi has been dressing himself lately so if you find him in giant clothing or backwards shorts with knee high socks just know momma wasn’t willing to fight the small battles that day.

If I am being completely honest with you, life is pretty crazy right now. We always embark on this crazy train for 6 weeks starting in February and we always survive it. In addition to our ministries we also begin fundraising for our teens to go to youth camp in the summer. Our adult soccer league will end tomorrow and that will free up two of our evenings again.

This weekend we tackled soccer all morning on Saturday and then hosted a fundraising banquet that evening, serving dinner/dessert/entertainment to over two dozen couples from our church. We set up a photo backdrop for photos and I took the opportunity to take a quick photo with Jake, but we were running pretty ragged, so I left the backdrop up so we could get a new family picture after church this morning!

**Full disclosure here: I am a big fan of transparency and being authentic so I feel compelled to mention that these photos have been slightly edited. I have an autoimmune disorder that affects my thyroid, something that has become more obvious in recent years. I often hesitate posting pictures of myself because of the comments and personal (well-intentioned) messages I get from people concerned about my enlarged thyroid. I see the thyroid doctor a few times each year to monitor the nodules that keep appearing and get them biopsied each year, but so far everything is benign. If the nodules continue to grow at the rate they are going I will need to have my thyroid removed, but we are delaying that as long as possible. Not a big fan of my crazy neck but I also recognize that it helps keep my vanity in check haha!**

Malachi has been doing so well these last few weeks and his personality is continuing to grow. Right now he is in a very opinionated phase and it is so fun to see him feeling empowered to communicate his desires.

His sense of humor is pretty amazing too. He is a genuinely funny kid and finds humor in so many things. He loves hearing a good, funny story. Health wise he is doing so incredibly well right now. His seizures are still there and out of control but he is happy and relatively healthy so we are so thankful.

I had just started entertaining the thought of being able to transition the boys into two separate bedrooms at night but this weekend I woke up to Malachi struggling to breathe. He was in the middle of a seizure and had inadvertently turned his face into the mattress and cut off his air supply. I don’t feel confident that I would be able to hear that through a baby monitor and it wake me up from a deep sleep so I still sleep nose to nose with him.

Levi is also staying healthy, something I have been praying fervently over! It has been so faith building for me to watch God protect us all from sickness as we have been coaching just under 100 kids twice each week in the soccer ministry. Praise the Lord!

Levi has been loving the warm temperatures here and has been riding his bike every chance he can get.

And yes, the puppies are all grown up. They are both about 90 pounds and still growing! Watching Levi ride his bike has been very special to me. I have actually been having a lot of those special parenting moments lately. I have been a mom for 9 years now but in so many ways we are new at the ”typical”.

Watching Levi’s character develop has been so much fun. He heard this week that one of our neighbors was sick and he immediately went to the fridge and asked if we could take her some food. ”Does she like grapes, mom?” as he packed her a bag of food from our fridge. I told him we would reach out to her this week and offer to bring her dinner. Then today at lunch he set one chicken finger aside and some french fries. I asked him why he wasn’t eating them and he said ”I am saving them for Ms. ____.”

Watching that kindness develop in him is an indescribable blessing.

I have been thinking a whole lot about parenting lately and I have read two quotes that have really stuck with me.

The first one is a quote from Pastor Andy Stanley: ”Your greatest contribution to the Kingdom of God might not be something you do, but someone you raise.”

I have been given the blessing of being a testimony bearer for one of my children, and a cheerleader in the stands for the other. They each already have such powerful testimonies and I find myself captivated by the plans that God has for each of their lives. What a blessing motherhood is. And what a wonderful challenge to raise children to recognize the voice of God when He calls them.

The other quote isn’t a feel good one…but it is incredibly challenging and something I needed to hear.

”Your kids are not ’making you crazy’, they are revealing your sin.” I wish I could credit this quote but unfortunately the source I read it from didn’t credit it either.

But take a moment to read that one again. If you don’t have children yet, plug in the name of your spouse, boss, family member…

All week long I have been reflecting on this one and bringing it to mind each time I find myself frustrated throughout the week. And each and every time I am able to back it up to a specific sin in my life- most often my pride and my desire to control instead of trust God. It is so interesting how our flesh can take our sin and push the blame onto others around us. The devil is such a deceiver.

A huge part of a healthy relationship with God is taking ownership of our sins. Naming them. Acknowledging them. And most importantly learning to hate them rather than accept them.

Sins remind us of the need for a Savior.

If you get a moment this week take the time to read Romans 5. There are so many beautiful truths in this chapter about our sin. Verses 6-8 tell us this:

For while we were still helpless, at the right time Christ died for the ungodly. For one will hardly die for a righteous man; though perhaps for the good man someone would dare even to die. But God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.”

And then another beautiful verse:

Where sin increased, grace abounded all the more” (verse 20)

In order for us to understand the magnitude of what Christ did on the cross we have to acknowledge our sin. Our worldly pride tries to tell us that we are justified in the sin that we daily allow. But Christ calls us to a life that is different than the world, a life full of grace from God and true repentance for our sins.

This week I am thankful to be a mom of two wonderfully unique boys and increasingly thankful for the many lessons they continue to teach me. And I am thankful for a God that allows His grace to abound, even when I don’t deserve it.

Much love,

Leah

Nuggets of Faithfulness

This week a chicken nugget led me into a God moment. Yes, that is a sentence I never thought I would write, but here we are.

On Saturday we overcommitted ourselves tremendously and tried to divide and conquer. Jake drove 20 high school boys to a soccer play day that lasted most of the day. I had both kids and had to orchestrate our children’s soccer ministry for 95 kids at the church from 8:30-2. Whenever God calls me to do something He is always faithful to supply the energy needed to do it, and Saturday was no exception. God also sent help my way with our boys which was such a needed blessing.

Malachi and Levi were troopers as they waited patiently for me to finish at the church but their tolerance for the chaos was dwindling by the minute. I had to get them up extra early and they both were very tired and Levi was getting cranky. I decided to go through a drive through and grab him some food to eat so he would have a full belly and nap when we got home.

Levi is still relatively new to eating full meals and we still rely on his g-tube for two daytime feeds and continuous feeds overnight. In his lifetime I think he has only had three happy meals from McDonalds, so it is definitely a special treat for him!

He was so excited about his chicken nuggets and when I pulled them out of the bag to hand him one they were way too hot to eat, so I started blowing on it to cool it down. In a stroke of ingenuity (or maybe just a healthy dose of common sense) I rolled down the window and held the chicken nugget out into the cool breeze. As I drove with that chicken nugget in my outstretched arm I looked at that shriveled, fried chunk of processed meat and got hit with an unexpected wave of thankfulness.

I thought back to the moment the doctor looked into my eyes and told me that Levi’s vocal cords were paralyzed and he wouldn’t be able to breathe or eat without devices/support. I thought back to that day I signed the consent for surgery to place his g-tube, and that feeling of defeat that overcame me. I thought about the hours of feeding therapies, and how God led us to one that took on the risk of treating Levi despite his airway anatomy.

I could almost feel the tension and anxiety from each time I sat in a waiting room as they looked at Levi’s lungs in the operating room to see if he had aspirated his food or water. I thought back to the swallow studies and the discouraging surgeon updates. 27 surgeries and 27 anxiety filled meetings with doctors after.

As I stared at that nugget I saw the faithfulness of God in our journey. It represented Him moving mountains in the path of my son and giving us a miracle. The surgeons in Cincinnati are continually amazed by his ability to learn how to eat food and divert it away from his lungs (his vocal cords do not close to protect the opening when he swallows). They said they have seen adults be able to learn how to do this, but for a child his age to do that is truly astounding. What a gift we have been given by God. Not to mention that beautiful voice that sings praises to God….something doctors told us we would never get to hear.

There is a story in 2 Kings about the prophet, Elisha and his servant. Early that morning the servant awoke and went outside to find the city being circled by horses and chariots specifically there to capture Elisha. The servant said to Elisha, ”Alas, my master! What shall we do?” and Elisha replied ”Do not fear, for those who are with us are more than those who are with them.”

2 Kings 2:17 continues: ”Then Elisha prayed and said, ’O Lord, I pray, open his eyes that he may see.’ And the Lord opened the servant’s eyes and he saw; and behold the mountain was full of horses and chariots of fire all around Elisha.”

It is easy to get overwhelmed by the hard things that surround us. It is easy to allow those unknowns to create panic and actions that we often later regret. But we have to remember that our God is for us, and He is behind the scenes surrounding us with His protection and provisions. We may not always get to witness our angel armies, but part of faith is believing that He goes before us.

This week a chicken nugget reminded me of God’s faithfulness to our family, and it also served as a needed reminder to me that I need to continue to cultivate a life of faithfulness to our God (Psalm 37:3).

I pray that God allows me to become more like Elisha and less like his servant, requiring the glimpses of the unseen in order to fuel the trust.

I know this is an unconventional update but that is where God has led me this evening. I hope that God uses these words to speak to your heart tonight!

But before I go, let’s talk about this sweet moment with Malachi as he listened to a man on America’s Got Talent do some amazing jumps in his wheelchair. His excitement was contagious as he listened to the crowd cheer the man on. The older he gets the more representation matters to him.

Much love,

Leah

Yes, Wait For the Lord

This week we knocked out some hard things and some fun things. The boys both had appointments with the cerebral palsy clinic so we loaded up to head to the local children’s hospital, which is about an hour away. Levi needed to have bloodwork done without seizure medications in his system so we headed there a bit early to go ahead and get his sodium levels checked for the neurologist.

As you know, Levi has major medical PTSD and I knew the doctor visit alone would be difficult for him, not to mention the blood draw. We have tried every method we can think of to help him through these hard times but every route we attempt has its flaws. This go around I went with the element of surprise and told him about the blood draw about 5 minutes before we arrive, explaining that today ”We are going to have to do hard things, but we CAN DO hard things!” We have been practicing blood draws at home with his doctor’s kit so he knows the routine and terminology.

Thankfully he didn’t put up too much of a fight and put on such a brave face through the tears. And we are still waiting for the sodium levels to come back. After the trip to the lab we headed up to our appointment and we were able to get official orders to get a technician to correct Malachi’s wheelchair. They did look at it for me and definitely agree that it needs to be rebuilt and re-centered. We have an appointment in a week. And Malachi now has a giant green bruise on his forehead from where he hit the floor last week. I wasn’t confident if he had hit his head, but the bruise tells me he most definitely did, poor buddy.

Traveling to appointments with the boys has always been a challenge, and each new season of life with them has introduced more things to work through. When Levi was on oxygen and g-tube 24/7 for those few years I thought we had it rough. But now we have a mobile toddler who is 99% potty trained….but that 1% chance keeps me on my toes. And not all bathrooms were built for wheelchairs, mommas, and toddlers. Not to mention the germ factor with a four year old in a public restroom. I find myself praying a lot of impromptu bathroom prayers these days.

We had therapies this week and other appointments but I feel like those updates can get so monotonous. So instead let’s talk about the fun!

If you are new to the blog, God laid it on my heart a few months ago to start a kids soccer ministry in our community. My goal was 50 kids and we ended up with nearly 100 (ages 4-11). They all practice on Tuesdays and play on Saturday mornings in shifts and coordinating that many little ones has been a challenge, but a wonderfully fun one.

Levi is “playing”- I put that in quotes because he is mostly just wandering around. But he is having a blast doing it so I guess we are good. I have a few pictures a friend snapped for us, as Jake is refereeing one little crew and I am refereeing the other. We are a bit distracted haha.

Malachi is one of the coaches and comes to every game and practice with his coach shirt on. He absolutely loves it.

At the middle of each practice and game for each age group we sit the kids down and do a time of devotion with them. This has been such an affirming thing for me as God has been SO CLEAR each week on exactly what needs to be talked about. My administrative nature wants to plan out the lessons for the whole season, but God has been challenging me to be still and quiet and let Him guide me towards the topic each day.

On Wednesday night Levi started singing a new worship song that I knew I didn’t teach him. I asked him where he learned it and he said ”Ms. Stephanie” (the music director). She had come into his Wednesday night class to teach the kids a song to help lead on Sunday morning. Levi sang the chorus hundreds of times over and over, and then Malachi started joining in. His excitement about singing grew each day and he couldn’t fall and stay asleep last night, just thinking about getting to sing at church.

And they both actually did sing it!! Every time I hear their voices I can’t help but feel like I am witnessing the after ripples of a miracle. I think about the healings in the Bible, and we get to see the actual moment but never get the follow up. I think about the moms and dads of the many people that received healings in the Bible and can’t help but wonder if their faith was kindled by seeing the miracles the way it has re-kindled mine.

My boys still have their struggles. They have their diagnoses and they have their specialists. But they are both living a drastically different life than the ones that the medical professionals predicted in their first few weeks of life. God has been so gracious to our family.

While I am witnessing the goodness of God in my family, I also can’t help but spend time imagining what is still yet to come with my boys.

Psalm 27:13-14 ”I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.”

Read that again and picture me saying it, because those words could have easily come from my mouth. There are so many moments where I have been on the verge of despair.

Waiting on the Lord is something I used to struggle greatly with. And there are days that I still do. But I have learned to look for His goodness hidden in the details and in the mundane. And I know they are just a fraction of what is yet to come.

I love the words in verse 14 ”Be strong and let your heart take courage…” Isn’t is so true that we have to LET our hearts take courage. It isn’t something that comes naturally, it is something we have to allow. It requires us allowing vulnerability to overtake our guarded nature.

So this week I am focusing on finding contentment while I am waiting on the Lord.

One final laughable moment. I was taking some photos of a sweet Malachi smile when Levi walked behind him and let a poot go. I was able to capture the sequence on camera and if this doesn’t show you his silly little 9 year old heart I don’t know what will.

May God bless each of you this week and my prayer is that you all experience Him this week. A true and legit God encounter that strengthens your faith!

Much love,

Leah