The Throne Room

Let’s start off with a video that I keep watching over and over again in amazement…right before I started filming I asked Levi “Who do you love?” Let’s see if you can understand his response:

Levi, the boy with paralyzed vocal cords is speaking clearly and loudly!!! He said “I love my dad alot alot.” When they first gave us his diagnosis when he was one week old they warned us that he would likely not have a voice, and if he did it would be very quiet.

God is so good!

The jealousy bug has infested our house. If anyone or anything is stealing my attention away from Levi he is sure to make his presence known.


Malachi actually thinks it is funny to hear Levi whine so he encourages the jealousy in his own silent way, making sure to steal lots of kisses when he is sitting with me and Levi is watching close by.

We had a week packed with appointments and Tuesday was our full day. At 11:30 the night before Malachi was still wide awake so I did what all good parents do and I bribed him. I told him that if he went to bed and slept until the sun came up that I would take him for pancakes. He has still been locked in on the 4:04am wake up time and I knew I wouldn’t survive Tuesday’s long day with the tiny chunk of sleep. I explained to him that if he woke up and couldn’t see the light that he needed to be a big boy and close his eyes again.

Jake laughed at my bribe and rolled his eyes. But Malachi stayed asleep until 5:45!! When I went in to get him out of bed after he woke up he was giddy and squealing with excitement. The sun wasn’t technically up but he knew he had lasted longer than normal so we still sprung for pancakes with lots of butter and syrup. Side note- no one warned me how nasty toddlers can get when dealing with syrup. YUCK!


Our regular therapist is out of town but thankfully the woman taking her place is Malachi’s hippotherapist and both the boys know and love her.




We knocked out a few more soccer games.


And I played with a new phone camera a bit and got some sweet pictures of the kids.



And one of dad just for the fun of it!


Jake and I are what the youth group teens call “old school”. We use things until they stop working, regardless of how uncool or outdated they may be. I have been using a very old iphone for years but it still worked just fine so I didn’t see a need to swap it out. But over the last two weeks it has been declining FAST, and this week it met it’s end and had to be replaced. But I will say that the photo quality is such a nice upgrade!

Levi has been working on trying new foods and has really enjoyed playing with fruit. We got him to suck on an apple slice which is big considering his oral aversions!


This weekend I had the privilege of attending a ladies conference in Alabama with a group of women from my church. Aside from the youth group lock-ins, I do not spend the night away from the boys.

Like any trip, it had positives and negatives. Some people from our group had to back out at the last minute leaving we with a room all to myself! It was so nice to just alone in a room, as crazy as that sounds. I really enjoyed getting the chance to spend quality time with my church friends and get to know some of the new ladies that came along.

It was also refreshing to be able to be spiritually fed. Since we are on staff at our church, almost every service time we are expected to be doing something with the youth. Sunday mornings during service is our time to get spiritually challenged but with Levi’s attention span I can’t stay in the service. I listen to it over the speaker in the lobby but get easily distracted so the focused God time was appreciated.

As for the negatives, I forgot how big crowds freak me out. There are so many germs floating around the room and since it was a ladies conference they would stop and do meet and greets way more than normal. My friends understood my germ fears and were respectful but not before a few strangers leaned in for some big bear hugs AHHHH.

While having a hotel room to myself for a night was wonderful in so many ways, it gave me a few PTSD flashbacks that I didn’t see coming. When I laid my head on my pillow and closed my eyes I automatically drifted to the memory of the night Levi was born. Jake had to take Malachi back to the house and I was alone. Levi had already been transferred to another hospital and I was spending the night without either of my children. I remember the tears coming as I heard other moms in the rooms next to me talking excitedly about their crying baby. And there I was, alone with a fresh surgery scar and no baby to show for it. That feeling of disappointment and desperation is something that I will never forget and hit me like a wave this weekend.

But it truly was wonderful to get away for a bit and take a deep breath. I am thankful that Jake was willing and able to keep the kids so I could focus on God.


I really thought I could do it this week. I was so hopeful that I could successfully go to the eye doctor with Levi and not cry a single tear. But once you have attached an emotion to a particular place and building, it makes it harder to sever those habits.

I gave myself a quick pep talk and wheeled the boys in for the appointment. I think the devil saw my confidence and decided to attack in the waiting room. As I looked around at the other families waiting for their turn I noticed that literally every child in there had a support group with them….both parents, some even also had grandparents….and I started to feel sorry for myself (oh the stinking devil is quick to attack).

Between the two boys we have too many appointments for Jake to even consider taking a day off to attend each one. We are very protective of taking unnecessary days off just in case there is a medical emergency that might take him out of the classroom for weeks.

I could ask grandparents or friends to come along, but to be completely truthful that adds a different stress element to the day. We live so minute to minute and many appointment days cause me to be a stressful bundle of nerves. Adding another adult personality into the mix isn’t worth it from a mental sanity perspective. My decision, but for some reason I was still jealous of all these other eye appointment families/cheerleaders.

The appointment itself went well with no further bad news or surgeries needed. He said that the patching we have been fighting Levi to do seems to be helping but we are looking at having to do two hours of patching daily for the next several years. Hearing all of those facts again set me into that dark place I hate to go to.

I was fighting back tears for the second half of the appointment and when I made it to the car I unleashed those bottled up emotions. I cried as we drove home, mourning over the motherhood picture I was yet again having to modify.

I spend a lot of time each week in the car. Our specialist appointments are all an hour away and our therapies are a thirty minute drive each way. I spend every second of the drive listening to worship music and singing at the top of my lungs.

As I drove down the highway, tears streaming down my face, a song came on that I had heard many times before. But this time was different.

The song is called “Nothing Else” by Cody Carnes and the first line was like a reset button for my hurting heart:

I’m caught up in Your presence
I just want to sit here at Your feet
I’m caught up in this holy moment
I never want to leave
Oh, I’m not here for blessings
Jesus, You don’t owe me anything
More than anything that You can do
I just want You
I had such a visual of me sitting at the feet of God with my tears landing on His feet.
I have visualized this scene so many times, and each time before I have been begging God for something. For Malachi’s life to be spared, for Levi’s healing, for answers, for courage.
But this time was different. I just needed a place to land and mourn. I needed a safe place to let the tears flow. And as I entered that throne room of God I felt his presence. I didn’t want to ask Him for anything, but simply craved being in the presence of someone that understood my struggles and my challenges.
Hebrews 4:16 says “Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Why is it that I wait for a total breakdown to enter into God’s presence? Why is it that I wait until I need to beg for miracles before I go into the throne room of God?
Like the song states: I’m not here for blessings. Jesus, you don’t owe me anything.I just want You.
I have been personally challenged to enter with the confidence that Hebrews refers to. I know my God is a good God. I know He longs to hear my fears, disappointments, and desperation. And He longs to offer his grace to me in those moments.
But my pride gets in the way and keeps me from entering into His presence as much as I should. I use it as a last resort rather than a first reaction….like somehow God’s grace for me is already portioned out and might be wasted on situations that are fixable by me.
So I am praying for more throne room moments. I am praying for more confidence. I am praying that when my heart is hurting I can remember that His grace, His free and beautiful grace is more than enough for me.
I am literally going cross eyed- I wish I had a hidden camera on me so you all could laugh with me at the number of times I have had to jerk my head up and delete a string of nonsense my fingers have typed while I slept. The kids are officially asleep so I am heading that way, but thank you for taking the time to read up on my boys.
Much love,




The Unseen

This week I had a moment…


On Thursday morning as I took my 45 second shower and prepped the boys for their day of appointments, I stared at my closet looking for something to wear. We would be at the hospital so it had to hit all the marks on the hospital outfit checklist…no laces that might drag on the ground, soles of the shoes had to be able to be sanitized, comfortable, dark colored shirt in case of a needed blood draw on one of the boys, dark colored leggings in case one of the boys had an accident that made its way onto me (a freakishly common occurrence).

I was in a mood. A negative, cranky mood and I knew I needed to catch that attitude before it made its way out of the house. I reached for one of my shirts with scripture on it as a way to hold myself accountable to act right.

The appointment was a routine one with the gastroenterologist. It is one of the only specialists that the boys share, which makes life a little bit easier. We went through triage with the nurse, getting the boys heights, weights, and updating background information.

I had popped out of my mood for the most part, but when she started reading the list of surgeries for Levi I felt myself slip right back into that darkness. I nodded with each surgery mentioned…all two dozen of them. Then she started the list for Malachi and I slipped even further into the darkness as I flashed back to the scary moments that surrounded most of those 15ish surgeries. Brain surgeries, heart surgeries, stomach surgeries…

As I listened to that list I just felt like such a failure of a mother. Why do my beautiful children BOTH have to suffer so much? Why can’t I fix them?

I had one of those special needs mom moments where you just feel like you aren’t enough. I would like to blame the devil for those thoughts, but in reality they stem from being told time and time again by specialists that I am not doing “enough”.

The doctor came in and we had a decent appointment. At the end of the appointment I asked the doctor: “So what are you going to tell me I should be doing that I am not doing?”

He glanced up from his computer and said, “Actually I am happy with how they are progressing. Keep doing exactly what you are doing.”

In my world comments like that one are rare. Every single appointment and therapy that we go to I leave with a list of things that I should be doing each day. The list is so long that it is unattainable. If I spent all of my focus on that list I don’t know that I could meet its expectations. So each day I have to choose to live minute by minute and do the best that I possibly can for each of them.

I felt my emotions starting to waver with his words of affirmation. Some days that rising water just sits a little too high on my neck.

We tackled 9 appointments this week, 5 of them falling on Tuesday. This week we will have 7 appointments including a trip back to the dreaded eye doctor. Malachi will also see his epileptologist.

This may be too much information, but Malachi’s urine has started to smell strongly over the last few days, which usually means something is brewing in his kidneys. Sometimes it means a urinary tract infection, other times it can be debris building up in his kidneys and trying to form stones. I am watching him closely to see what steps we need to take next. We hate to overreact and take him in for a urine sample (they usually have to use a catheter for that) but don’t want to under-react and allow him the opportunity to develop sepsis.

Levi has been extremely congested since Friday; we are hoping allergies are to blame. He is pretty pitiful but his oxygen levels have been staying up. He is breathing louder than normal so you can tell there is definitely some constriction in his airway but it isn’t to a dangerous level yet.

Let’s talk about some of the highlights of our week!

Levi has started dancing and it might be the cutest and funniest thing I have ever seen. I took a very short video for you:

Jake and I do not dance and have zero rhythm so we truly don’t know where he learned how to do this. I have watched that clip at least a hundred times and laughed and laughed.

Levi is also learning how to wave goodbye, but it is still a work in progress. Here is a clip:

Malachi has been pulling some late nights with momma. He is still waking up at 4:04 on the dot, but he is staying up later as well. We were hanging out in the living room one night this week and I noticed that he was really looking at me. In the low light of the room he was able to see me well. It is always so encouraging to see improvements with his eyes. You never realize how special eye contact truly is until you have a child that can’t easily give it to you.


Malachi is still absolutely smitten with baby Levi, and the feelings are mutual. We have to keep an eye on Levi because he assumes that Malachi wants to do whatever he is doing and tries to get him involved. Levi is quite the handful these days and drags whatever he can find and carries it all over the house. This afternoon he sneaked up onto Malachi’s lap to show him the can of pumpkin he had snagged from the pantry. When I turned the corner he had gently placed it on top of Malachi’s head like a hat. Malachi loves the randomness and their bond is just heart warming.


Looking at that chubby belly reminds me to tell you that Malachi is 31 pounds now! Before baby Levi was born Malachi was 40 pounds, and he dropped down to 25 pounds while we were in the NICU in Ohio trying to manage the care of both boys. It devastated me to see such huge physical changes that were a direct result of me not being able to be mom to both boys each day. He has started to put that weight back on and we are seeing some meat on his bones.

Levi has been fascinated with Malachi’s wheelchair so we have been letting him drive it, much to Malachi’s delight.


Levi is going through a very jealous stage and oh boy is it wearing this momma out. Anything or anyone else that competes with my attention is unacceptable to his little one year old brain. We are dealing with a lot of meltdowns and temper tantrums, which we in turn combat with lots of sitting on mom’s lap and hugs and kisses.

At one of the soccer games this week we were having one such moment and a friend snapped this picture of me trying to help Levi calm down:


But I love that sweet little annoying boy with all my heart!


He has also started walking around like a major general with his hands tucked behind his back. We have no idea where this habit came from but it is awfully cute.


He had a fun morning with his buddies at church this morning.


Since we end up spending a lot of weird hours awake with Malachi, Jake and I both record several different television shows to keep us awake and help pass the time. I have been so disgusted lately at the content of the television shows and commercials that air so I revert back to the old fashioned shows like Little House on the Prairie and The Waltons. Jake sticks with history channel shows. But we have a few favorites that intersect, like Jeopardy and America’s Got Talent.

This week was the season finale of America’s Got Talent, a talent show that features a variety of performers. The performers go through several rounds and the rounds at the end of the series are voted on by viewers. It is easy to get invested into the contestants and their stories.

But one particular one this season really hit a special nerve for both Jake and I. There was a man named Kodi Lee, a blind and autistic 22 year old singer who also plays the piano. We watched week after week as he was voted through to the next round. And each time he did a new performance you got to see a little bit more of his personality and spirit shine through.

Since Kodi is blind he relied on his mother to walk him out onto the stage each performance and I couldn’t help but be drawn to her. I watched her more closely than I watched Kodi and I felt such a connection to her, especially in the way she looked at her son. There was such a bond between them, a connection that is shared between a son that is locked in his brain/body and his mother.

I saw myself in her eyes.

I have so much pride overflowing in my heart for Malachi. He may not achieve the world’s milestones for a six year old, but he is amazingly special, talented, and intelligent. He is one of a kind. I wish the world could know my Malachi the way that I do. I wish they could see the boy that I see.

Spoiler alert- Kodi Lee ended up winning America’s Got Talent. As they announced him as the winner I watched his mom, even getting emotional at the victory that was taking place. Not only was her son recognized for his above average talent at singing and playing the piano, but voters had looked past his “can’ts” and fallen in love with this young man.


I saw the emotion overcome her face as she watched her son simply be seen and valued for the unique person he is.


Oh how my heart connected with hers.

I don’t know why God has chosen me for the task of being a mother to two very special boys. But when I look into the eyes of Malachi I see the love of Jesus and I know that this is right where I am meant to be.

I am not enough for them. I will not ever be enough. But I believe that God stands in those gaps with His overflowing grace and mercy. He carries all of us in the palm of His hand.

2 Corinthians 4:16-18

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.

This week I am choosing to fix my eyes on the eternal unseen. And I pray that God continues to renew me day by day as He has promised.

I pray also that the world continues to look into the eyes of my Malachi, and others like him, and see the beautiful and valuable creation that he is. I pray that Malachi continues to tell people about the love of God without ever having to speak an intelligible word. And I thank God that He has given me the privilege to be a part of his story.

May we always focus on the unseen.

Much love,



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


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.


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.


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.


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.


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.




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!


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.


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,










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.


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.


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.


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!


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!


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.


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,












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,