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

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.

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.

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

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

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