Unstained

Let me just take a few moments and brag on my sweet Malachi.

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Malachi is intelligent, opinionated, and so unique. When people take the time to get to know him they see what a normal little boy he truly is inside. He is mischievous beyond belief and has a very tender heart.

As I have told you before, watching people truly SEE him is one of the best feelings in the world. But with the addition of Levi into our chaotic world I have been guilty of not giving Malachi the opportunity to “talk” to me and give him a voice.

This week I have been trying to be a more conscientious mother and take the extra time to give Malachi more choices in his day. I always want him to know that I see him and value his opinion.

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Malachi has been so excited this week at all the choices he has been getting to make. We do the typical clothing options, food options, and toy options but I want to let him make bigger decisions too. One night this week as we got ready for bed I asked Malachi if he wanted to sleep in the big bed with mom and dad like he usually does and he quickly signed NO. This caught me off guard as he has been sleeping in the bed with us since we came home from the NICU with Levi last March. We had been sharing the bed at the Ronald McDonald House together and it just became a habit. It never occurred to me to offer him another option.

So I asked him if he wanted to sleep in his own room by himself and he squealed while signing YES YES YES!  Each night this week he has chosen to sleep in his own room again, and we have made sure to celebrate his big boy decisions each night.

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In true Malachi fashion, his brain has been locked in on a new time to wake up each morning. This round he is stuck on 4:04 and stays up until about 6:00. His brain fascinates me so much.

Both of the boys have been amazingly flexible this week with our chaotic schedule. We had 5 soccer games in 6 days, 6 medical appointments, and lots of activities with the youth group.

Jake and I are pretty good at switching out our hats for each of the roles we play, but this week we had a lot of overlap so we had to divide and conquer. Saturday morning Jake had to get 21 soccer girls to a tournament and I had to get 16 of our youth group teens + my own kids to the local food bank to fill food bags. Yes, I could have easily found someone to go in my place and supervise the teens but we feel so strongly that the kids need to see examples of choosing to serve over the more entertaining aspects of life.

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As you can also see, Malachi got a haircut this week. But back to the food bank, Levi became the self proclaimed supervisor, distracting them as much as possible haha.

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Afterward we headed to the field to catch the rest of the soccer game. I took a ton of photos this week at the games and couldn’t decide which ones to post so you get to see them all! Levi manages to get filthy at each and every one- I think he just wants to guarantee that he will get to stay up later to get a bath each night…he loves his bath time.

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Malachi’s wild raptor has been such a blessing this week as it gives him an easy way to get from the car to the field and also provides a comfortable place for him to sit during the game.

Side note- the group that modified Malachi’s ride created something called “The Malachi Movement” and are now adapting these for special needs children all over the United States! They are currently working on some for three local families who happen to be buddies of ours through the special needs world, and I can’t wait to see the smiles on their faces.

Levi has been so active lately, running everywhere he can. He is completely done with the whole crawling concept and never stops. As he becomes more active we are starting to hear his stridor come back, which is a reality check to me that we are still in need of a miracle. I have caught my heart mourning a few times this week as I watch him with a soccer ball and realize that sports might not ever be in his future. If his vocal cords don’t wake up, doing anything active that could restrict his breathing can be life threatening for him.

Obviously I don’t care if he plays sports, but the idea of having to have that conversation with him one day makes me really sad. Life will already be different for him as we live our beautifully unique life with Malachi- I just crave some normalcy for him.

But Levi’s talking is improving each day! Tonight I put him to bed and said “I love you Levi” and he quickly responded “I love you too bye bye” as he laid his head down. Jake was in the room and we both looked at each other completely shocked to hear such a complete and appropriate sentence. To God be the glory!

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In a few weeks I will be going to a women’s conference with a group from my church that will require me to be away overnight. I have so much anxiety about those 30 hours. Jake is an excellent and capable father but there are so many things in our routine that have just always solely been on my to-do list.

In an effort to help ease some of the anxiety I have been having to put Jake through a boot camp of sorts making sure he knows where all of the medical items are what to do in case of emergency. On Saturday I had him swap out Malachi’s g-tube so he would know how to put one back in should one of theirs pop again. Malachi’s is easy to switch as he is still and calm. Levi decided to toss the challenge our way on Tuesday night and popped his out when it was unprotected during his bath time.

Getting his back in is at least a two man job but we managed to get it back in quickly. We will just pray Jake doesn’t have to deal with that emergency while I am gone!

The truth is, I am most anxious about bed time as Jake is a heavy sleeper. I am up and down with the boys several times a night, checking g-tubes, fiddling with pulse ox machines, un-kinking Levi’s tubing when the feeding pump alarms go off…on a typical night I am up 6-8 times between 11-4:04 when I wake up with Malachi for round one.

Malachi wakes up every single morning, no exceptions, with a tummy ache which quickly sparks seizures if you don’t address it. It takes at least an hour but more often two hours to get his stomach to a safe enough level for him to relax and maybe go back to sleep. That process is truly an art form haha.

I guess I just have to give those worries about the conference weekend to God and try to capitalize on the uninterrupted sleep…I am not so sure my body will recognize what to do!

This week God has showered our family with blessings. From little gestures to mind blowing generosity from strangers, we are reminded again and again that God is holding our family in the palm of His hand.

This week marks the one year anniversary of our buddy Johnny going to heaven in a motorcycle accident. As this week has approached I have found myself running a myriad of emotions. We have the privilege of being involved with his children’s lives and each time I look at them I can’t help but see Johnny.

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When we first met Johnny ten years ago he was a gruff and angry man. But as the years went on we watched a beautiful transformation happen within in. His anger melted away and God replaced it with such a beautiful spirit that drew you to him.

Johnny lived a radical life for God. He was uncompromising in his faith, especially over the last few years. He craved the gospel and spent time pouring over the words of Jesus- he would come over to the house and talk for hours about verses that pricked his heart. When you talked to him about God he had a unique fire in his eyes.

But there was one verse in particular that he locked in on and couldn’t ignore. I literally cannot read this verse without hearing it pour out of the mouth of Johnny, that’s how much he recited it.

James 1:27  Religion that is pure and undefiled before God the Father is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.

This week I have been focused in on the word “unstained”. I can’t stop saying that line over and over again in my head.

Truth be told, Johnny’s life was far from unstained. Johnny had a past and he fought battles in which the world won. But we are never so stained that God turns away from us. The Holy Spirit continued to pursue Johnny’s stained heart and he allowed himself to be washed clean by the grace of God.

How often do we knowingly open our hearts to the stains of the world and welcome them to become a part of our lives? We even start to see our worldly stains as normal and acceptable, as we look around and see stained Christians all around us. We start to normalize and justify our stains instead of desiring for God to wash them away.

As children of God we are called to keep ourselves unstained. Is that even possible? Our sinful natures are continually drawing us to the things of this world, re-prioritizing God’s place in our lives. I dare say that it is impossible to remain unstained from this world.

So is this verse challenging us to something that we can never truly attain?

Regardless of our human efforts, the stains will continue to come. But the grace of God is so powerful that it can erase every stain from our lives, much like we saw in Johnny’s short life.

But here is the catch….

Do you see the stains? Do you hate the stains? Do you WANT to look different than the world?

God’s desire is that we stand out and look different than the world. His desire is that our countenance that is white as snow would be like a lighthouse for others who need to come and know Him. When we start to blend in with the world we lose that lighthouse effect.

My prayer this week is that God continues to give me the courage to pursue the unstained life. Yes, I will undoubtedly fail at remaining unstained, but the constant pursuit of that life is what pleases the Lord. I pray that God allows me to see my stains and washes me clean yet again with his unlimited grace and mercy. And I pray that God gives your heart the same desire.

Please pray with us this week for miracles. Pray for good reports for our upcoming appointments and safety as we travel back and forth to the hospital this week.

Much love,

Leah

 

 

 

 

 

 

 

 

Wounding Work

This week we dealt with the typical post-sickness battles with Malachi. While the head cold we passed around was very mild, the extra mucus that it created for Malachi set him into some intense seizures each day. He has something called Lennox Gaustat Syndrome (uncontrolled epilepsy) and is having 2-4 seizures on a good day, which is down from his 8-10 he was having daily before his CBD oil. He had a pretty massive 4 minute one on Thursday and I started considering administering his rescue meds, something I haven’t had to think about doing for quite some time. We carry them with us wherever we go and when we administer those we have to call 911 as it slows his respiratory rate down a little too much. Thankfully he popped out of it without any intervention. By Friday morning I felt like he was stable enough to try school for the day.

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A praise report though: Levi was the only one who didn’t catch the cold! That is such a blessing with his narrow airway and something that only the Lord could have orchestrated.

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We canceled all but two of our appointments this week, which was actually pretty refreshing. We get into such a monotonous routine sometimes with therapies and having a surprise break of getting to sit at the house and rest was much needed. To give you some perspective, we still have 29 appointments/therapies left for the month of September. Just process that number…our medical schedule alone gets so overwhelming.

Despite the down time, we still had a few adventures this week! On Friday evening I had taken a solo trip to the grocery store and pulled onto our road at 9pm. As I came up the hill I heard the camera alarm go off on the front porch and assumed it was Jake coming outside to help carry in the groceries. But when I glanced at the camera I saw another very long black bear meandering by the front door.

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When we built our house we designed the front porch to be an extension of the driveway so I could pull under the awning when it is raining to get Malachi out without getting wet. So I cautiously drove up to the front door and sprinted inside, asking Jake nicely to  carry in the bags of food. I just feel like we are constantly being watched by the bears in the woods. It is such a spooky feeling!

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Soccer is also in full swing- this week we have a game on Monday, Tuesday, Thursday, Friday and Saturday. That is insane! Malachi and Levi still love going to the games so we haul out lots of seating options for the kids, a small tent canopy, and enough snacks to keep Levi happy. By the end of the games Levi is usually filthy beyond recognition and exhausted which is a hidden bonus as he sleeps like a rock!

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On Saturday Jake, Malachi, and I went to a friend’s wedding. We were worried that Levi wouldn’t be quiet so when our buddy Tanner offered to sit at the house with him we gladly agreed. We talked the adventure up to Malachi explaining that only big boys got to go to this wedding…no babies were allowed! He felt like big stuff and was extremely well behaved. The ceremony was outside and he got overheated a bit. Interesting fact about Malachi: he doesn’t sweat so his temperature can get a little dangerous. But much to Jake and I’s surprise he was dripping with sweat after the ceremony, so much so that it saturated his hair! I know it sounds crazy, but I get excited when things like this happen as I wonder if his brain is rerouting connections like we always pray for.

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Levi has still been singing while he does just about anything. In fact, right now it is 11:00pm and he is laying in the crib next to me trying to fall asleep…just humming away. His speech is improving and he is adamant when he asks for something, like “Bubble” for Bubble Guppies. He has also been very eager to help with Malachi, like trying to put on his shoes and socks for him. He really has a sweet and tender heart. Here is another sweet video of him singing:

The mix of sleep deprivation and not feeling 100% took its toll on me and I found myself doing the most ding-batty things like putting the TV remote in the car. In addition to all of that, the fire extinguisher in the kitchen at the church had leaked all over the floor and as we investigated what the fluid was I managed to get some of it in me eye. It burned and kept me awake at night even though my body desperately desired the sleep.

This morning in Sunday School our teacher brought up a man named John Bunyan. I remembered the name from a book I read in High School called Pilgrim’s Progress but I didn’t know much of anything about him other than that.

John Bunyan was a preacher in the 1600s who was imprisoned for preaching the word of God, and during this time he wrote several books including Pilgrim’s Progress. He was given several opportunities to be freed if he would vow to stop preaching, but that was a vow his convictions never allowed him to make.

He had a wife and four children who clearly suffered during his time in prison from the lack of financial and emotional support from Bunyan.  One of his children was born blind, and after reading a bit about her you can tell that they had a very special bond.

Bunyan said: “O I saw in this condition I was a man who was pulling down his house upon the head of his Wife and Children; yet thought I, I must do it, I must do it.”

When I look at John’s life I see something that a lot of us choose to look past when it comes to our walk with God.

For true separation from the world and a concrete unity with God, there will be pain involved. Obedience to God’s calling on our lives requires self denial and the desire to pick up your cross and carry it joyfully, seeing the beauty in the sometimes painful journey.

In The Excellency of a Broken Heart he says, “Conversion is not the smooth, easy-going process some men seem to think . . . . It is wounding work, of course, this breaking of the hearts, but without wounding there is no saving.”

There is a wave happening in Christianity today where people choose to focus on the loving attributes of God and not the hard stuff that He asks of us…the obedience and the sacrifice. Our human nature likes to focus only on the things that make us happy and assume that God desperately wants us to be happy- we don’t REALLY want Him to exchange our heart for one like His. We want to pick and choose the things that we like about Christianity and go all in for just the easy, natural parts like loving our neighbors.

But as Bunyan states, conversion is wounding work.

Is your walk with God challenging? Is the Holy Spirit actively working in you, wounding you by cutting off the branches in us that don’t bear fruit?

If there isn’t a little bit of discomfort and pain within your walk with God, are you truly seeking God and asking Him to refine you? To heat you up in blazing fires, to send challenges into your life that bring your impurities to the surface where He can scrape off that dross and remove it from our lives?

I know this is some really intense stuff, but it is something that has been on my heart so much lately. What has it cost you to follow Jesus?

2 Corinthians 5:17 says “Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.”

Have you said goodbye to your old self? Or is one hand grasping desperately to your old self while God firmly holds your other hand that is reaching for Him, choosing to be caught between two worlds that aren’t meant to coexist.

Please join us in prayer this week that God would send us our miracles. Pray also that He continues to give Jake and I a strength that defies all reasoning, and patience specifically for me when my mind is weary and my boys are not.

Much love,

Leah

 

 

 

 

 

 

 

 

 

 

Memory Lane

This week I made a drive down to Chattanooga with the boys for a soccer game. As I drove through a town close to the hospital I had such an urge to shut my eyes, which obviously wasn’t doable as I was driving. It seemed like every few seconds was another spark for a flashback.

The H&R Block I used in 2013 when Malachi was still in the NICU for tax season. I remember being so bitter that I had to leave his bedside to do such a menial task. I was on the verge of tears during the appointment.

The Texas Roadhouse parking lot where I talked with my OBGYN about the night Levi was born, trying to figure out what we were missing- not realizing yet that his vocal cords were paralyzed. I have a vivid memory of staring down at my hospital bracelet that day…the NICU requires you to keep it on until discharge so it almost becomes a badge of shame as it reminds you that your baby isn’t like everyone else’s.

The Target that I went into the day I was discharged from the hospital after having Malachi- clueless about what to buy. I remember the cashier noticing the breastfeeding supplies I was buying and naturally asked if I had just had a baby. Her question was one I wasn’t ready to answer so I just cried and left the store. The drive down that same bumpy road caused me so much pain that day as I hadn’t ridden in a car since my emergency c-section.

The Wal-Mart Jake and I ran to when Malachi ended up in the ICU with the flu the year after he was born…pre-hospital bag days. We were still believing that our medical journey would end with a completely healthy child who overcame his prematurity. He fought hard and we almost lost him that week. It was a reality check week for our family.

Literally every few seconds I passed another memory. So I focused on the road right in front of me, hoping that the mental attack would stop. But as I focused on the road a low flying airplane passed right in front of me. That took me back to the night I was in the air ambulance with Levi, staring down at the lights of Chattanooga, filled with so much hope as we made our way to Cincinnati.

I thought about the Angel Flight that Jake was able to take to get to Cincinnati to bring Malachi, Levi, and I home for the first time in 5 months. I started smiling thinking about the wager I had with Jake that he would throw up on that flight. Thankfully for all involved, he did not.

As I made that drive on Thursday I ran the gamut of emotions, getting teary eyed several times at some of the harsher memories. But as I looked in the rearview mirror at sweet Malachi and wild-man Levi I couldn’t help but burst with gratitude that I get to share life with them.

Our story has been filled with horrible moments….some people are blessed to maybe have just one or two of those life altering moments in their lifetime. But for our family there are too many of them to count.

But as hard as our story has been, it could have ended up so differently.

I could have flashbacks to picking out headstones, or choosing outfits to bury my children in. I could have flashbacks to funeral days or those moments that doctors came in to deliver the news that my son had gone to be with Jesus.

But that isn’t our story. And my heart is so thankful, even when we deal with the messy.

Today I am blessed with two healthy, happy boys who love each other fiercely. Tomorrow may bring more hard memories, or more unpleasant things but for today we are simply living our uniquely blessed life.

We are thankful for every second that God gives us together on this side of heaven. It has been worth every memory, every fight, every hospital stay, every surgery, every tear.

Check out this photo from Levi just one year ago today and you will visibly see how far the Lord has brought our family!

Once we literally drove down memory lane and got to the soccer game I was able to take a deep breath. The boys love being on the sidelines with us. We have a new chair for Malachi to sit in so he doesn’t have to be in his hot wheelchair. And Levi likes to roam and play the role of assistant coach.

We knocked out six appointments this week but there aren’t too many updates from those.

Malachi loved his water therapy as always.

 

And Levi watched intently, working on his model poses poolside haha.

 

Levi has been working hard on his walking this week and is independently staggering long distances. This morning he was chasing after a girl so I grabbed the video camera to catch it on film for you.

Levi has also been so much more vocal lately! I took a video this week so you could hear his sentences. In this one he says “I said doo doo doo dooo…” and sings for you. You can hear his stridor as he struggles to catch his breath. We will be watching this closely to make sure he isn’t getting dangerous with his oxygen.

And of course, he has been thoroughly amused with the fart machine…here is a video:

A friend of ours was selling a giant bean bag couch so we snagged it hoping to give the boys a nice seat they could safely share. It is absolutely massive!

 

Levi is his typical ornery self. I worked four days at the office this week and he was not a fan of his play pen, even though it is essentially the same size as the office! He just doesn’t want to be told where to play so he screams at me to get him out, which I can’t always do. His new tactic is sticking his fingers into the back of his throat to make himself throw up, knowing that will get my attention. Oh boy! He also did this lovely new move in his car seat on the way back from Chattanooga.

We are finding all the places that aren’t baby proofed around our house. Levi is getting faster and stronger so we have to be on our toes 24/7. He is tall enough now to reach things on the table.

Here is a video of his sheepish door opening abilities:

Malachi was able to attend school three days this week. Sickness is starting to brew in the school system so it will be pretty spotty on which days he will be able to attend.

He has been enjoying life so much these days. He loves to just sit and listen to the world around him.

Speaking of sickness, with the weather changing there is something brewing in me. It could be allergies, it could be a head cold, but either way it has caused a full fledged sinus infection. Any sickness, even the smallest ones, puts us on edge as we watch the boys for signs and symptoms. So far they are both sickness free.

We had the youth group over to the house tonight, our new Sunday night tradition. I try to treat them the way I would have wanted to be treated at their age so we prepare a spread of foods for them and invite them to join us for dinner. You all know the chaos of our schedule…we rarely have time for dinner with just the four of us… but you also know my motto: If God calls you to do something He will never deplete you of the energy needed to accomplish it. If food will motivate them to come and study God’s word with us, then we don’t think twice! We have been exchanging Sunday afternoon naps for cooking, and I haven’t felt a negative difference so I think my motto is proving to be true.

I am doing a study with the girls about beauty and we are talking about the different aspects of the beauty the comes with knowing God. Tonight we studied a verse in Psalm 34.

“Taste and see that the Lord is good.”

Have you ever really processed this verse? How are we supposed to taste that God is good?

But what I think this verse is really aiming to help us realize the difference between knowing about God and truly knowing God.

I can tell you all day about what a cotton candy grape tastes like (yes, that is a real thing). I can describe the texture to you, paint a picture of what it looks like, vividly tell you what it feels like when one explodes between your teeth. I can tell you about the sweet flavor of the juices inside and compare it to other things you might have tasted in the past.

But until you taste one of those grapes you will never really know what it tastes like.

It is easy in Christianity to hear about other people’s God moments and feel that flutter in your heart. It is inspiring to hear testimonies of healings and transformations. But until you experience God, taste God, for yourself you can’t realize how amazing He truly is.

We talk to the youth over and over again about the difference between knowing ABOUT God and knowing God. Once you taste the goodness of God your life will be forever changed.

Is your faith in God based on others detailed descriptions? Is it based on a sermon you heard from a powerful preacher? Is your faith based on commentaries you read? Is it based on Bible stories you read about in God’s word? If so, I want to encourage you to truly TASTE the Lord and experience Him for yourself! Speak to Him and allow Him to speak back. Allow His Spirit to guide your heart.

When you have a relationship with God you will continue to see and taste His goodness. And let me tell you, it is way better than any description that someone might try to give you.

I am headed to bed, but want to thank you all again for checking in on our family each week. I got so many encouraging responses from last week’s post about the eye doctor and I am so grateful to have so many people looking for ways to lift us up. Please continue to pray with our family for more miracles.

 

Much love,

Leah