It has been an up and down few weeks from my last post. Levi’s airway is continuing to struggle with allergies and a now a head cold. He gets around 24 ounces of high calorie formula through his g-tube at night to supplement the extra calories he burns during the day and we are on might 6 of him not being able to keep the nighttime feed down.

In addition to him not getting those needed calories at night he has also not eaten well during the daytime clearly feeling a bit off, dehydrated, and crummy. He has lost a noticeable amount of weight over the last two weeks and I am struggling trying to get food into him. He has also been too weak to send to school most days this week and just seems so pitiful.

In the chaos of vomit catching at night I have accidentally forgotten to turn his feeding pump off at night when I am frantically unhooking him. As a result, I pumped about 20 ounces of formula into our carpet/pad underneath. Whew our house smells a little rough right now!

Levi had an eye appointment on Thursday and he was able to do a test that he has never been still enough to complete in the past. This test allowed them to get in depth imaging of his optic nerve; these nerves have been on the radar for the doc since birth.

Prior to this imaging they had told us that his left optic nerve was deteriorating due to brain damage caused by oxygen deprivation in his first few weeks of life (a diagnosis called Hypoxic ischemic encephalopathy). They had warned us before that it looks as though he is losing vision in his left eye due to this nerve damage. This week’s tests revealed that the damage exists in BOTH optic nerves and he is on the edge of the line for requiring accommodations for vision impairment (enlarged print materials, etc). They have ordered more testing to check the tissue beside the optic nerves to see if the damage has spread to those areas as well.

This is obviously really disheartening news. Especially since there is nothing that can be done to reverse the damage. I suspect that some of his limitations in school can be attributed to his inability to see well and process what he is seeing.

I have been up and down on the medical mom roller coaster. There is a part of me that is just so discouraged for him, recognizing how many ways he is set up to fail in our society. Then there is the faith part of me that recognizes that God’s story for Levi’s life is still being written and to simply be still and see what God will do.

Malachi has had a rough week as well, also catching a head cold. For a typical child the recovery from a cold is a simple 3 day process. For Malachi it is a pretty intense life-changer, often taking 7-14 days to completely overcome. Right now he is on oxygen and cycling through our respiratory protocol every few hours to help keep his airway clear and open. We use a nebulizer and albuterol to open his airway, cough assist machine to send air deep into his lungs, and his shaky vest to break apart any stubborn lung gunk.

I am so so so thankful for the many supplies we have at the house to avoid hospital stays! This would have been a hospital stay had we not had the equipment on hand to keep him safe and comfortable.

Malachi is also gulping air more than normal and his seizures have increased and he requires lots and lots of venting (releasing the air in his belly through his g-tube). We are camping out in the living room this week to keep us close to equipment.

Prior to all this chaos we did have some fun family time!

The boys had a visit from our farm friends, who recently got a second sloth! This sweet baby girl is just four months old and as cute as can be.

The boys also got to do a little fishing.

Malachi genuinely loves fishing (despite his photo)! We cast out the line and then hand over hand help him reel it in. Malachi will “jig” the line as we reel it in to tempt the fish and is so focused and proud when he catches one.

I have been feeling so many emotions lately. If I had to pick just one it would be “weary”. There are times within this calling that a weariness creeps into my bones and discouragement comes. And this has been a season of weariness. Anyone else feeling that today???

I look to my left and right (admittedly dangerous step #1) and see others that are seemingly able to balance their lives, priorities, marriages, and friendships.

When I look within a 24 hour chunk of our day I am spending a large majority of that in my caretaker role of addressing seizures, managing feeds and medications, and trying to sneak in some normal parenting moments and normal marriage moments. I am incredibly thankful to have a husband that loves the Lord, is filled with grace, and is willing to run this race alongside of me. The scraps that I have left to offer friends are not enough to do friendship “right” or well.

In a world where I am not, and will never be, good enough at any of these roles, I am thankful that HE is enough. I cannot look at a 24 hours chunk and not see the many ways He was come alongside me and strengthened me. I am thankful for a God who sees me and shares His grace with me…even though I will forever be undeserving.

This season of weariness is not hidden from God and I believe it serves a Kingdom purpose, even if I can’t directly see it.

I read something this week that reminded me of how thankful I am for God and His plans. I didn’t write this and I have not been able to find the author, but I really needed this reminder.

In the Bible, it rained for 40 days and 40 nights. Day 41 came and the rain stopped.

Moses committed murder and hid in the desert for 40 years. Year 41 came, and God called him to help rescue Israel.

Moses went up on the mountain for 40 days. On day 41, he received the Ten Commandments.

The Israelites wandered in the wilderness for 40 years. Year 41, they walked into the Promised Land.

Goliath taunted Israel for 40 days. Day 41 came, and David slew him.

Jonah preached a message of repentance to Nineveh for 40 days. On day 41, God stopped His plan to destroy them.

Jesus fasted and was tempted for 40 days. Day 41, and the devil fled.

After His resurrection, Jesus appeared to the disciples for 40 days. On day 41, He ascended into Heaven.

Don’t give up at 40, because 41 is coming.

While it is fun to think about the day/year 41 when we get to see victory, it is also important to cherish and value the work that God does within us for the first 40, preparing our hearts for what He is about to do.

“Why do you complain, Jacob? Why do you say, Israel, ‘My way is hidden from the Lord; my cause is disregarded by my God’? Do you now know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:27-31

Sincerely,

Leah

Our spring break getaway spoiled us tremendously and getting back into the real world has been difficult for all of us.

Overall we are all healthy and well. So here are some rambling updates…

Malachi has been so funny lately. We plan on taking him to a small private school for a few hours each day starting in the fall- he is entering the 6th grade, which blows my mind! He is a sponge these days and is finishing at least one novel a week on his audiobook reader. He is such a fun kid and craving some peer interaction. With him starting school with new-to-him kids I was telling him we were going to start working on his response time when asked a question. I explained that I can be patient with him and wait for him to respond but that the kids his age just aren’t that patient. He took our conversation to heart and when we sat down to dinner 15 minutes later he continually punched Jake to get his attention and ask for things….a sip of his drink, a taste of blackberry jam, etc. And did it all with a big smile on his face.

Malachi is so used to not being “heard” by strangers that it has slowly become his expectation. We simply have to teach others to listen to him and encourage him to keep trying.

Side note on that thought trail. When we are in public we are met with several different reactions, conversations, and experiences. The majority of the people we meet are very kind and mean well with their comments. But so many of them assume that Malachi cannot understand what they are saying which is just not true.

This week in the grocery store parking lot we were stopped by a woman who was expressing her condolences on how hard my life was and how she would be praying for me as well as my son’s healing. Her intentions were so pure, but as I got in the car I thought about those comments through Malachi’s eyes and they just made me feel so sad for him. I never want him to feel that he is a burden to me or that there is something wrong with him.

These opportunities allow me to practice showing the grace of Christ to others, and they also allow me to have affirming conversations with my Malachi about how he is God’s handiwork.

This week Levi asked me if Malachi had Jesus in his heart. I contemplated how to answer him, so instead of answering I told him to ask Malachi. And when Levi asked Malachi he immediately signed YES YES YES with so much enthusiasm he nearly threw himself off the changing table. What a precious reaction!

Levi has been growing and changing so much. These last few days he has been struggling a bit with his breathing. We were worried he was getting sick but are now pretty confident he is dealing with allergies. They have also been doing controlled burns in the national forest beside our house and the smoke has been significantly impacting his breathing.

Because of Levi’s tight airway, any swelling causes labored breathing for him. It also causes him to gag and then vomit often. So it brings about dehydration and weight loss as he isn’t retaining the same amount of calories his labored breathing is burning. Usually by April we are getting close to needing another Cincinnati surgery and this year is no exception. He can run around and be active for just a few minutes before he is gasping for air and pale.

The only issue is that we are running out of surgical options to help his breathing. We discussed removing his lingual tonsils when we spoke with his surgeons post op last summer when we removed his tonsils and adenoids. But really that was the only “small” repair option that we had on the radar. They did mention the possibility of doing another single stage laryngotracheal reconstruction (where they put the piece of rib in his vocal cords to prop them open) but we REALLY want to avoid that surgery if at all possible. We would limit his activity, particularly the ones that cause the struggled breathing, before we schedule something of that magnitude.

They open up the summer surgery schedule in April so we are working to get his dates established with his specialists and the operating room for this summer.

Here is a photo from career day at his school; he wants to be a match teacher like his daddy. He is very into matching daddy these days.

Next topic- and a difficult one. I owe you each an apology.

This blog started as a way for me to share my faith with others through the testimony of Malachi’s life. And while I have tried to stay true to that intention I have allowed insecurities to distract me from that purpose over the last six months.

I can’t count how many times I typed out a devotional thought only to delete the entire thing, worrying about my word choices or searching for hidden tones that people might find within what I wrote. I overthought each entry, feeling inadequate and not Christian enough to hear clearly from the Lord and be used as His mouthpiece.

I let the words of man replace the voice and promptings of the Lord, and the conviction I have felt over this is overwhelming. And embarrassing. In the Bible we see God speaking through a burning bush, a donkey, and lots of insignificant people. Time and time again in God’s Word we see Him choose wretched sinners like me to share His truths.

2 Corinthians 4:7 “But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves;”

We are simply earthen vessels. We don’t have to worry about the presentation or interpretation, but rather allow God to move through our obedience to Him. My accountability is to God and God alone. So I am going to do my very best to write what I feel like He is laying on my heart and trust that His Word will not return void (Isaiah 55:11).

I apologize for my disobedience, and I am repenting to the Lord for it. I didn’t share so many things I felt called to share, and I am so sorry that I allowed myself to be distracted.

Galatians 1:10 “For am I now seeking the favor of people, or of God? Or am I striving to please people? If I were still trying to please people, I would not be a bond-servant of Christ.”

So here we go…writing and walking in obedience.

Over the last month I have had the tiniest chunk of scripture playing in my head over and over again. In fact, last week it was mentioned in a Bible study, which is wild because it is such an obscure piece of scripture.

Context: Shadrach, Meshach, and Abednego refused to bow down to the king’s graven image and were cast into a fiery furnace. The furnace had been turned up so much that the men who led them to the furnace entrance died from the heat. The three friends were tied up and thrown into the furnace but the Lord sustained their lives. Oh how I love this chapter SO MUCH!

Daniel 3:26-27 “Nebuchadnezzar then approached the opening of the blazing furnace and shouted, “Shadrach, Meshach and Abednego, servants of the Most High God, come out! Come here!” So Shadrach, Meshach and Abednego came out of the fire, and the satraps, prefects, governors and royal advisers crowded around them they saw that the fire had not harmed their bodies, nor was a hair of their heads singed; their robes were not scorched, and there was no smell of fire on them.”

I grew up in southern Ohio in a very old farmhouse that didn’t have heat or A/C, our main source of heat coming from a fireplace in the living room on the first floor. Being the youngest and having two older brothers, I was rarely responsible for stoking the fire. But the smell of smoke often lingered on our clothing and in our hair and served as a reminder of that fire.

But these men were literally IN the fire and there was no smell of smoke on them. They were unaffected by the seemingly uncontrollable circumstances around them. We see miracle upon miracle in this story.

In many ways our medical world for the last decade has been a fiery furnace. It has been a place that we never expected to find ourselves in and something we were not fully prepared for. And from this fiery furnace we have been given the chance to watch miracle upon miracle.

But this month I have found myself wondering if I smell a little like smoke. Do I carry around the evidence of the fire that we are in? Or do I carry around the evidence of God’s protection within it?

This week I am challenging myself to look for God not just in the big, evident miraculous moments but even in the smallest details. Those precious moments where He is still very much working, even in the absence of visible evidence. The absence of that smell was as big of a miracle as was their preservation of life.

1 Peter 1:6-9 “In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls.”

May our time in the furnace, whatever those may be for you, result in praise and glory and honor at the revelation of Jesus Christs.

Much love,

Leah

We ended the month of March with much needed family getaway! The break allowed us to feel “normal” for a week, free from medical appointments, insurance battles, and phone calls. It was a needed moment to breathe for all of us.

We used Malachi’s Make-a-Wish passport and packed our days with adventures. I will include a few photos, but this video does a pretty decent job summarizing our adventures:

Malachi chose most of our activities and we learned quickly that he wouldn’t be allowed to do all the things he had put on his list. Many of the places we contacted had liability worries about him participating so we had to navigate that delicately to avoid major disappointments. He wanted to ice skate but the facility wouldn’t let his wheelchair on the ice. He wanted to ride rides but they required the ability to sit independently. There were a surprising amount of “no”s this trip.

But there were also an incredible amount of surprise blessings. So we chose to focus on those!

There is also something else we have been really trying to consider…should we be giving Levi experiences that his brother can’t participate in? Navigating this one was delicate this trip. But sweet little Levi was very aware of his brother missing out and brought tears to my eyes one afternoon. We had received wristbands for “the Island”, an outdoor area with several rides that we could do for free. We passed a trampoline jumping area and I asked Levi “Would you like to do this? It looks like fun and there is no line!”

Levi: “Can Malachi do this one?”

Me: “He isn’t able to do this one but I think you would really enjoy it!”

Levi: “That’s okay, I don’t want Malachi to feel sad.”

Finding the most appropriate way to parent in our world is very hard and situational. And I am confident we don’t always get it right. But watching Levi’s character grow is so special.

So focusing on the “yes”s….

We did alllllll the shows (Stampede, Hatfileds/McCoys, Magic, Comedy Barn). We swam in the wave pool and lazy river. We went to the Titanic Museum, WonderWorks, Magiquests, and so many other fun stops. We flew in a helicopter, rode go-cats, and battled in bumper cars on and off of the ice.

We had lots of medical moments in the mix, but we charged through. The very first night Levi’s feeding pump tube came out of his extension and we “fed the bed”, meaning the 26 ounces of formula that was meant to go into Levi’s tummy went into the hotel bed/mattress instead. Thankfully the hotel had waterproof pads on their beds and we had a washer and dryer in the unit that was the MVP of the morning.

Navigating Malachi’s seizures in public is always a bit tricky and brings about some anxiety. When we enter a place we mentally mark a safe space for us to run to when he has a seizure. But we also try very hard to preserve his dignity in those moments and not make a spectacle of it; many times that means we have to wait for the seizure to end before we take him to a different location to vent him, as walking him by crowds mid-seizure wouldn’t be respectful to him. But there were many places this week that didn’t have a place to run to that was free from the crowds and that situation always elevates our stress levels a bit.

But oh how the trip was worth it!! Seeing the joy on both of their faces was so special. And these medical moments were just drops here and there on a relatively normal week! Malachi loved the opportunity to have choices and make decisions for the family. And we were able to do so many things that we would not have been able to afford to do.

We are so thankful to Make-A-Wish for these special “extras” and also thankful for friends that were generous enough to offer us a week in a condo.

I found myself being extremely sentimental this week. March is the month of many surgeries for Malachi over the last 11 years…his first brain surgery, his g-tube getting placed, and so many others.

Six years ago in March we underwent some life changing and desperate surgeries with Levi. And March also marks the month we got to bring Levi home after 5 long months in the NICU.

March the following year was when we took our first every family trip, and interestingly enough it was to Pigeon Forge. I remember having to do the math to make sure we had packed enough oxygen tanks, tube supplies, and medical EVERYTHING to keep us functioning safely.

And here we are…many March’s later. Things are still complicated, things are still messy, there is still a lot of math involved, but WOW what a testimony God has written in our family.

Psalm 37:24-26 “The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His right hand. I was young and now I am old, yet I have never seen the righteous forsaken or their children begging bread. They are always generous and lend freely; their children will be a blessing.”

Oftentimes my memories can be really difficult things to reflect on. But this week I find myself thinking back on some really hard seasons for our family and being able to see the very present hand of the Lord through every season.

He has never forsaken us. And He has been Jehovah-Jireh (the Lord will provide) through every leg of our journey. He has been the fourth man in the furnace with us and continues to guide us through terrains we aren’t equipped to navigate apart from Him.

This week I am increasingly grateful for the testimony He is writing through our family. Some weeks that is a hard sentence to say. But this week I am overwhelmed by God’s providence. And I am thankful for special weeks like this one that help me forget the cloudier days.

Much love,

Leah