This week was mostly spent recovering from the chaos of last week. Malachi had a hard time weaning off of his oxygen, his breathing stamina dwindling after a few minutes each time we turned it down. Late Saturday evening we were finally able to turn off the concentrator and he has now been oxygen free for 24 hours! And he was thrilled to get those tubes off of his face.

Medical momma fact: nasal cannulas (the tubing that goes on his face and into his nostrils) has a very distinct smell. The only way I can describe it is “medical” and I figured out a few years ago that it is one of my PTSD triggers. Levi was on oxygen for the first few years of his life so it was a smell we were familiar with, but now that it is a come and go type thing my brain forgets that scent and makes the memories flood back when I catch a whiff of it.

When Malachi is still fragile like this we stay home and close to all of the medical devices and stick to a schedule with breathing treatments, cough assist, medications, diaper changes to prevent skin breakdown, and CPT. It is very difficult to focus on anything outside of healing so weeks like this one end up being very unproductive. But Malachi is happy and healing so I really can’t complain.

We were able to get a CPT machine (we call it a shake vest…not a very creative name considering that is exactly its function) from a medical supply company this week and I truly think that, paired with consisted breathing treatments, has helped him finally get rid of the crud in his lungs. Malachi loves this machine. It shakes his body pretty aggressively and the motion it creates makes him laugh. Raccoon fingers Levi got ahold of the settings and cranked it up when I wasn’t looking, making Malachi flop like a fish out of water. I was mortified and Malachi thought it was the greatest ride of his life.

The boys both got some much needed haircuts. Here is a before and after of Levi’s wild hair. We got a little stir crazy mid week and decided to cash in a gift card and celebrate our fancy Christmas meal that we missed out on. I had bought a small honey baked turkey for Christmas this year but we didn’t get to sit down and enjoy it together- I gave Jake and Levi the green light from the hospital to knock it out before it went bad. So this was a fun substitute and we all enjoyed getting out of the house for an outing.

So let’s talk about this kid. Levi started preschool this week! The transition went amazingly smooth and he ran into the classroom on the first day without any issues. He is a chatterbox each afternoon when I pick him up, sharing the most random details from his day. He says he loves school!

After just two days he was able to recite the class verse for the week (including the reference which impressed me) and he was singing new Bible based songs. He is a tiny little sponge, eager to soak in all of the new information. And it sounds ridiculous but even his vocabulary and sentence structure is maturing as he spends time around peers.

And I don’t know how to accurately explain this so bear with me, but lately I have felt like I am drowning. I have all these dreams and goals of the type of mom I want to be but I am just stretched so thin with the extra needs in our family. Having someone else on board to help educate, love, and disciple Levi has been a breath of fresh air to my heart. It feels like I have a new teammate, and I don’t think I realized the value of that partnership until I experienced it this week.

Malachi and I are also enjoying the one on one time together while Levi is at school. We read books, play games, and tackle lots of projects we can’t easily pull of when brother is around. This morning he woke up giggling, knowing that we were going to get some Malachi and mommy time after we dropped Levi off at school.

“Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though something strange were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing, so that at the revelation of His glory you may also rejoice and be overjoyed. 1 Peter 4:12-13

As I prepared the lesson for our youth group this week I couldn’t help but chuckle at this verse. Yes, I recognize that this isn’t a verse that usually elicits laughter. But this verse so correctly personifies some of what my brain has been doing over the last two weeks as we navigate another fiery ordeal.

We have been through dozens of medical surprises. Dozens of life threatening medical emergencies. Months and months of surprise hospitalizations. Yet each time it happens it surprises me, “as though something strange were happening” to us.

The Bible is abundantly clear…we are not exempt from suffering. We are not exempt from trials. What we see as tragedies God sees as growth opportunities for our faith. And He sees each of our fiery ordeals as an opportunity to reveal His glory to us AND to all those looking in.

I often forget that sometimes the trials we experience are not for our growth, but are sometimes for the growth of the audienced in our life. Nurses we encounter, other parents we connect with through mutual suffering, even you reading this blog right now. God in His mysterious ways often asks us to be the hands and feet of Him and oftentimes that can involve some varying level of suffering that grows the faith of us or of someone close to us.

I have mentioned this before but it has been so present in my thoughts this week; we are called to be good stewards of our suffering. Even our darkest moments contain a hidden purpose that we may not initially get to see.

Our egos convince us that we should see the results and benefits of our suffering. But our faith tells us that even when we can’t see the work of God we must trust that it is in fact happening.

We are called to keep rejoicing. When the fire gets hotter we are still called to look for things to rejoice over. When the outcome isn’t the one we expected we are still called to look for things to rejoice over. When the healing doesn’t come still we rejoice.

Because it is in our humility and trust in our God where His glory is revealed and we become image bearers of Him.

Please continue to pray for our family, that we are able to find some steady ground this week. The transition of school has brought about some changes with bedtimes, routines, and medications. Which leads to my final note…

After a decade of weekly entries on this blog I am going to now start blogging every other Sunday. We have the youth over to the house for dinner and Bible study every other Sunday night and those days are extra long with cooking (and the clean up) for 40 teens! My plan is to blog on the Sundays we don’t host the teens. We had them over this Sunday so plan on an entry next week and then I will start alternating after that.

I will continually be praying about this and leaving room for God to direct me differently! I see this as a ministry God has entrusted me with and my work ethic in it is one of my love languages to Him.

Thank you for continuing to pray for the Carrolls!

Leah

Malachi spent most of the week in the PICU and we were finally able to come home Thursday afternoon. Right now he is stable on 1 liter of home oxygen, which is markedly better than the 20 liters he was on one week ago.

I am not really sure how to even begin to summarize a PICU stay. Each day merges into the next and the things I could report to you aren’t very exciting or interesting. The consistent things throughout each day:

*Lots of breathing treatments and Chest Physiotherapy (CPT). Malachi would inhale two forms of medication through his nostrils to lessen lung inflammation and loosen up the junk inside them. Then he would receive chest percussions to try to move the junk enough to cough out. CPT can be done lots of different ways, but this time we had the luxury of having a bed that performed the function. Malachi LOVES this, as the bed pounds his back up repeatedly, bouncing him up and down.

We have an appointment with a home respiratory therapist tomorrow to get out own CPT vest for home use. And we have been continuing the breathing treatments through our home nebulizer every 6 hours along with his cough assist machine, a machine that forces air into his lungs then pulsates it out. Needless to say Malachi hates this machine.

*Antibiotics. We are on day 14 due to making a switch to a stronger one halfway through. This is clearing up the bacteria in his lungs and attempting to prevent a secondary infection like pneumonia. It has added some tummy drama into the mix, but we are praying that will clear up quickly when the meds stop.

*Hydration. Thanks to Malachi’s gtube this one is manageable, but when he was on 20 liters of oxygen the air filled up his little body and made anything in his stomach highly uncomfortable. So while in the PICU we relied heavily on IV hydration and stopped his feeds. When we attempted to restart his nutrition we dealt with some pretty significant seizures so we just got him back to a full feeds regiment yesterday. And his seizures levels back out to his normal 4-6 mild ones a day.

*Reading. Malachi knocked out at least 1 book a day. We watched a lot of movies, listened to a lot of worship music, FaceTimed daddy and Levi, and did our best to make the most of a long stay. When Malachi is in the ICU he is hooked to an incredible amount of monitors and machines, so holding him is often not possible.

Malachi was an absolute rock star with the best attitude. He is such a role model to me about dealing with hard things and still being able to find joy in your circumstances. In some ways our hopsital stays are like a family reunion, with nurses and doctors saying “look how much he’s grown!” Malachi is very remembered by lots and lots of people, some who have been there since his birth. So we have a lot of friendly faces. Even the ICU doctors remember him well, remembering details from previous stays.

This time around we had a breakthrough of sorts that was very special to me. Every other time we have been in the ICU Malachi has been life threatening and very sick. As the week went on Malachi started to feel better and his true personality was shining through. The ICU doctors and specialists got to witness Malachi signing and other glimpses of his intelligence and were genuinely impressed at how cognitive he is. I was a proud mother, beaming each time he communicated on his own with their questions by signing yes/no. He even communicated the source of his pain at one point when his IV had infiltrated. Such a smart boy. We give him a multiple choice list and he is a champ at indicating his pick.

One morning at rounds the ICU doctor noted that Malachi wasn’t acting “like himself”, and it was spot on- they had moved his oxygen flow down and he wasn’t handling it well. It was one of the first times that I felt like doctors “saw” my son, and meant so much to me.

Alright, I think that covers the factual side of the stay. Now let’s talk about the psychological and logistical side.

Any hospital stay is mentally and physically exhausting, but the ICUs bring a different dynamic to them. The care in the ICU is a 1:1 or 1:2 ratio, which is such a blessing. But the care required is much more extensive so there is a steady stream of doctors, nurses, respiratory therapists, and others coming throughout the entire day. I was already running on fumes from trying to keep Malachi safe at home so jumping into the ICU world already weak was difficult. I was extra emotional and just so weary. I couldn’t think straight and my mouth couldn’t keep up with the words I was trying to convey.

Our first room just had a normal chair bedside and getting into bed with Malachi wasn’t possible due to his IV placement. We were moved twice in the unit and after 48 hours we were in a room with a sleeping chair. I was trying to contain my excitement at having an option for sleep and as soon as Malachi closed his eyes that night I crashed hard.

The ICU is focused on healing (as it should be) so parent comfort is a luxury (not complaining here). There are no restrooms inside the PICU so if you have to potty you have to leave the unit and re-check back in to re-enter. So I am pretty calculated on how much I drink/eat to try to limit leaving Malachi’s side. I would wait until he fell asleep and sneak out for a restroom break and a quick run to the vending machine/cafeteria. There is zero privacy in the unit so changing clothes isn’t an option without carrying them out and changing in the public restroom down the hall. Eventually you just feel like a drowned rat though and no amount of clean clothing will help with that level of ick.

We were admitted on Saturday, and on Tuesday I had my first opportunity to run to the Ronald McDonald room to shower, put on fresh clothing, and run some of Malachi’s laundry. The hot water heater was broken but it was a glorious cold shower!

Emotionally I handled this round better than most, likely due to the fact we weren’t ever in a life threatening moment. I had two solid breakdowns but could feel another one brewing when they moved us out of the ICU and to the “floor”. We were put into a closet of a room and at this point down to 4 liters. Malachi’s IV infiltrated and had to be taken out so I crawled into bed with him, but in the middle of the night he vomited all down my hair and back. I was more determined than ever to try to get him out of there and home!

On Thursday we were given discharge papers and we wheeled out of that place as fast as possible. Each time I go to the ER I pack a hospital backpack with 1-2 days worth of supplies, clothes, chargers, etc. Then I pack a car bag with enough for 4 more days and use it as a locker throughout the stay to switch out old/new. This time around I also packed a wagon with all of his machines and oxygen tanks so we were wheeling the train in style.

When we got home Levi ran out to greet us, started crying, and immediately slammed the door and shouted “I HATE YOU MALACHI!” It broke my heart but I understood it came from a place of confusion and not understanding why we disappeared for 6 days. I know that as Levi grows older he will start to understand some of these hard things, but the emotions are still very real and present. Levi stayed mad for most of the evening but when he woke up and we were still home he released that anger.

There are so many emotional parental layers to hospital stays. Being present with one but feeling helpless. Being away from the other and having to close the emotions that surround that situation. So many feelings….and also feeling like you are failing in both arenas.

Levi and I have been running errands together this weekend to give him some one on one time with mom. And lots of hugs and cuddles to help him feel secure. When my world is spinning I know his is too, so trying to get all four of us re-centered has been my priority this weekend.

We pretended like Friday was Christmas and the boys got to open their presents. Malachi was/is still weak and healing so he was excited but overwhelmed a bit. And Levi was very excited this year so that was fun!

We watched Christmas movies, played lots of family games, and spent the weekend reconnecting.

I have felt emotionally fragile all weekend. When I am in the hospital setting I run mostly on adrenaline, crashing about 48 hours after we get home. As I let my mind wander I started trying to think of a time in my life where there wasn’t something hard or challenging for me to get through and I was coming up empty handed. A large majority of my life has been lived with a backdrop of trials and hard things. With the timing of this one being over a holiday week our abnormal family dynamic seemed much more in my face than most weeks. Watching normalcy and easy joy happening with others really got that inner dialogue spiraling. Comparison is one of the easiest traps to fall into.

And then that led to the reality that I am not convinced that we will ever have normalcy or easy joy. Our joy will need to continue to be supernaturally supplied by he Lord and something we have eyes to hunt for. And hearts that truly desire that. Being a victim of circumstances and staying in that dark place is deceptively easy to do.

It is in these moments that the devil spots weakness and strategically enters the scene. This week I have been fighting the many types of grief that rise up. Sadness for my child and the suffering he endures. Anticipatory grief knowing that Malachi’s health will not miraculously improve, but instead steadily continue to worsen. Hospital stays will become more frequent and longer lasting. Selfishly being so tired…and feeling like I need to keep giving more. But also wondering how much more my heart and body can take. The side effects from that fatigue affecting the other parts of my life are becoming more and more pronounced.

We are surrounded by people who love and support us, but also don’t truly see the daily struggle this life can be. And I find myself trying to mask these struggles to protect my fragility. Being vulnerable is incredibly hard for me so when people ask how things are going I give blanket responses that make them feel good and have closure instead of telling them the truth. Transparency seems….pointless. And honesty just makes things incredibly awkward.

I have spent a lot of time talking with God and reading the Word this week, trying to find my balance. I have been seeking Him on some very specific things over the last month and He has been so gracious in guiding me through those. But I still felt a distance between us.

All throughout this hospitalization my mind was drawn repeatedly to one particular verse, Hebrews 10:21-23 “And since we have a great priest over the house of God, let us draw near with a sincere heart in full assurance of faith, having our hearts sprinkled clean from an evil conscience and our bodies washed with pure water. Let us hold fast to the confession of our hope without wavering, for He who promised is faithful;”

Let us draw near. God is steadfast, so when we sense a distance it is done by us, intentionally through sin or unintentionally as a result of apathy.

But aside from simply drawing near, this verse reminds me of the importance of a sincere heart in full assurance of faith. Sometimes it is good to check the posture of our heart in our relationship with God. Is it based on love or results?

Let us hold fast to the confession of our hope without wavering. I love the visual of this. Abiding in God is more than a proximity issue, it is a decision to hold fast without wavering. And this week I recognized that I had let my hands slip off the hem of Christ and wavered a bit.

For He who promised is faithful. As I drove to the hospital Malachi and I listened to worship music and one of the songs mentioned the faithfulness of God. And as I continued to drive towards an unknown situation I had flashbacks of this same drive that we have taken over and over and over again. Each time I was not able to predict what would happen when we entered the doors of the emergency room. But here we are, nearly a decade later and God’s faithfulness in our lives cannot be ignored.

In a world of unknowns and trials, I can honestly speak that God is faithful.

Yes, a large majority of my life has been lived with a backdrop of trials and hard things. But God has been faithful time and time again, and ever present through each of them. I can spot His hand in every fire He has called me to walk through.

So even though this life can be exceptionally challenging, I am thankful for the gift of front row tickets to see the faithfulness of God. Over and over and over again.

This week I am taking a deep breath and working on drawing near again with a sincere heart. I am praying for His Spirit to call out my moments of wavering and help me focus my eyes on Him. He is faithful and has been so good to our family, and this week in the ICU was no exception.

Much love,

Leah

In true Carroll fashion the pendulum swung and I am typing this entry from Malachi’s bedside in the PICU.

Both boys ran fevers at the beginning of the week and Levi started bouncing back by Wednesday. Malachi immediately required oxygen but was comfortable enough that we decided to try to keep him home. We have an oxygen concentrator that goes up to 4 liters, a pulse ox machine, suction machine, cough assist, nebulizer, and so many other pieces of medical equipment that allow us to stay away from the hospital a little longer than most. But times like this week it still just isn’t enough.

Almost immediately, Malachi’s lungs sounded crackly so I did a Telemedicine appointment with his pulmonologist and he started him on antibiotics to combat any pneumonia that might be brewing. I was feeling confident and comfortable with our plan and Malachi seemed to be responding well to everything we were trying. We let him open his adapted dice roller and Chutes and Ladders early and we spent the week playing games, reading books, and trying to keep Levi entertained.

But as the week went on Malachi’s work of breathing increased and I watched his body start to heave for air. We watched him like a hawk for several days but on Christmas Eve we noticed a blue tinge to his lips and decided it was time for a visit to the emergency room. I asked Malachi “Are you scared because you can’t breathe?” and he signed YES YES.

There is a delicate window for us to make these decisions. We don’t want to overreact and go to the hopsital too soon, as Malachi recovers best in his environment/home. But if we wait too long and it becomes an emergency situation we have to call 911 as we are one hour away from the children’s hospital. The portable oxygen concentrator only goes up to 3 liters and we were beyond its capabilities so we dragged out the large oxygen tanks to get us there safely and made the drive.

The extreme cold temperatures in our area impacted the hospital in a huge way. Some of the heaters shut down, a water pipe burst, and a sewage pipe also burst. When we checked into the ER they were in the process of rerouting most of the patients in the children’s section to parts of the connected adult hospital. It was mid 60s in the room we were placed in and Malachi started to spiral pretty quickly as they ran diagnostic tests (blood work up, viral panel, chest X-ray) to figure out what was going on.

Malachi was diagnosed with RSV and his blood gas showed that he was retaining too much carbon dioxide which leads to acidosis. The only way to balance out those levels is to “blow” the extra CO2 out of his lungs and so they started him on 20 liters of very high flow oxygen. Obviously this much flow through your nostrils is uncomfortable and hard to get used to, but the immediate relief it provided was well worth it.

Malachi needed to be admitted to the PICU but they said that all of the beds were full due to the flooding situation. They explained that we would stay the night in the ER and move up the next day. As Malachi continued to worsen I quickly grew uncomfortable with the situation. He was going through spells of extreme agitation and heaving hard trying to breathe, even with the high flow. I started getting a little panicky myself, feeling like I was the only solid set of eyes on him in the busyness of the ER. We weren’t being routinely checked on and my anxiousness grew. Seeing Malachi go downhill so quickly made me emotional and the doctor finally came in to talk.

Me: He is making me anxious with how hard he is working. I am just afraid he is going to run out of energy and possibly code.

ER Doctor: So let’s talk about that. What do you want me to do if that happens?

Ughhh. I understand that the question has to be asked. I get it. But in that moment I was trying to convey that I was uncomfortable with how fast he was spiraling. An appropriate response would have been something to calm that or find a solution with me. Not immediately jump to the question of should we have life saving measures in place. That is not at all a conversation that a typical family would have in that moment.

Some people have DNR (Do Not Resuscitate) orders, but that is certainly not how our family operates. Obviously she didn’t know that. But her timing of that question hit me in the wrong way.

Immediately in my heart I was reminded that I needed to be an advocate for Malachi. But the truth is that regardless of how much I advocate, blog, and share our lives there will always be a percentage of the world that will fail to see value in the Malachis. But oh, what an undeniably beautiful and unique blessing Malachi brings to the lives of everyone who meets him.

Even though I don’t think the doctor meant harm I couldn’t help in my heart allowing it to impact my feelings of being “unsafe” in the ER. My mind started questioning, “If he were a typical child would they have made space for him in the PICU?” I am fully aware that maybe that is an unfair stance, but I am being transparent with you all. And I am very tired and fragile tonight haha.

4am rolled around Christmas morning and one of the doctors from the ICU came down to assess Malachi. She said they had a room ready for him and within the hour we were transported. I felt such a peace overwhelm me as we settled into the new space, knowing that he was in good hands and I didn’t have to carry the concern alone. The PICU at our hospital is great at including parents as part of the decision making process.

As far as Malachi’s respiratory status, he is currently stable and we are trying to get his carbon dioxide level and oxygen needs back to safe ranges. This process is different for every child, but as long as he is requiring the high flow we will remain in the ICU for close monitoring. Malachi is interactive and stable, just not healthy enough to leave the support of the hospital. We are seeing an increase of his seizure activity as we are trying to get food into his body again, and that is always a delicate thing to maneuver and continues to be one of our biggest daily hurdles.

In complete and total irony, the project Jake and I chose for our Christmas this year was writing letters and sending gifts to parents in the ICUs in this hospital. We have been in this position before on Christmas Day and it is such a hard road to walk. We talked as a family about what we were doing and Levi was so excited that we were helping other mommies and daddies who have kids in the hospital on Christmas. We explained that Jesus tells us to love one another and that is why we look for people who need to feel that love. As I explained all of this too him he started to get teary eyed with empathy, especially when we talked about his first Christmas in Cincinnati Children’s. Jake, Malachi, and I were living in a hotel next to the hospital and the emotional wear that day took on me was great.

Levi’s little heart just continues to grow larger for others. One of the other “traditions” we do each Christmas is pack up toys in the playroom and give them to other kids that might need them. We did this project a few weeks ago, but this week Levi found some empty boxes and packed them up. He excitedly brought me in to show me and asked if I could take them to other little kids who don’t have any. Sweet boy.

Our boys don’t have the tradition concept of “Christmas Morning” in their heads so we are able to get away with celebrating it on a later date this year when everyone is home together. But we did allow Levi to open his big present to help him handle my absence a little better. I had Jake FaceTime so I could see his reaction and it was so sweet. I did replace the picture of me in the corner though as I look like I have been in a cage fighting match and lost.

This time of year I can’t help but let me mind drift to Mary. I know I have shared similar thoughts to these in past years but it is fresh on my heart today.

Luke 1:28-31 “The angel went to her and said, ‘Greetings, you who are highly favored! The Lord is with you.’ Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, ‘Do not be afraid, Mary; you have found favor with God.’”

That was the moment that Mary’s calling was revealed to her.

This got me thinking about the moments leading up to Malachi’s birth that were foreshadowing moments of what was to come. Things I missed in the moment but looking back have such clear fingerprints from God.

13 year old Leah riding her bike to a farm down the road looking to earn some summer cash. What I didn’t know was that stable was used for helping disabled children and adults ride horses. I will never forget the Table of Contents in the information packet the owner handed me, telling me to go home and look through the packet and see if I was interested in volunteering. Each chapter was a different disability and it opened up a world I didn’t know existed.

College aged Leah, wanting to be a journalist or a writer. But I continued to feel a prompting from God to pursue the path of special education teacher.

And then there is the night of Malachi’s birth. I was laying in my bed in so much incredible pain when suddenly my feet hit the floor. I heard a clear and audible voice command “Get up and go”.

How special is it to realize that God has been preparing you for the very difficult roles He knows He is going to give to you. He is strengthening your muscles in subtle ways for the load He has hand chosen for you to carry.

As I look back on those moments I absolutely see the hand of God, but I also see something else in them. The step of obedience. Each one of those moments had a pivotal point of decision making or acceptance of the call.

And Mary did just that.

Luke 1:38 “‘I am the Lord’s servant,’ Mary answered. ‘May your word to me be fulfilled.’ Then the angel left her.”

How often do we say these words to God?

I am the Lord’s servant?

How often do we act as the Lord’s servant? Where our desire to serve and please Him is greater than our desires for autonomy.

So while I naturally mourn another less-than-normal holiday for our family I also recognize that there are opportunities for obedience within this week. There are moments where I can reflect God to others. There are moments where I can choose others over self. There are opportunities for me to be the hands and feet of Jesus to my son.

I am the Lord’s servant. May your word to me be fulfilled.

May we all act in humble obedience to the hard and beautiful things God calls us to. And may we do so with the grace of young Mary.

Please keep our family in your prayers. Healing for Malachi and peace for Levi as he deals with absence.

Much love,

Leah

When I opened this entry to start typing the website had a prompt question: Is your life today what you pictured a year ago? What a dangerous question for parents of medically complex kids. There are so many highs and lows in a single year that it seems like a dangerous game to play.

One of the biggest struggles I have had to overcome is the grief I carry for unmet expectations. We all have dreams of how we *think* things should go, and when our pictures don’t match reality it has the ability to sprout bitterness. And then that bitterness can overtake the tiny but good parts of our journey.

So to combat it, I have had to make the decision to let go of expectations. Take life 24 hours at a time, knowing that each day is different than the last. And embracing each day as it’s own mountain to be climbed.

One year ago today Levi had his first seizure and second seizure just a few hours apart. I remember watching his movements and feeling my stomach drop. If you are a mother to an epilepsy warrior you will know exactly what I am talking about. Watching a seizure and not being able to take the discomfort away is one of the hardest parts about being a medical mom.

Seizures dictate and control a large majority of our day already with Malachi, so seeing Levi having one really hit me differently.

But here we are, one year later and Levi has remained seizure free for 364 days. He is medicated twice daily for them and will remain on them indefinitely. We know that there are spots of brain damage, so seizures were always a possibility and now that they have happened the likelihood of them continuing is great enough to keep him on meds for life. It is not a seizure type he will grow out of.

While my heart still mourns over another diagnosis for one of my children, I can’t help but thank God for answers and medications for these issues. And I am so thankful that we have been able to control them, as Malachi’s are still very much uncontrolled.

Let’s just take a second and look at these handsome boys and how much they are growing!

Malachi will turn 10 years old in February! And he is going through a growth spurt; carrying him long distances is getting increasingly challenging.

And Levi is freshly 5 and still hilarious. Someone asked him this weekend what the name of one of his stuffed animals was, and he casually answered “Mephibosheth” with complete clarity (a Bible character who had physical disabilities so we focus on him often). He has been singing lots of Christmas music lately, focusing in on one line and singing it over and over again. This week’s chosen line has been “Repeat the sounding JOOOOYYY” over and over and over again.

This weekend we gave the boys an early Christmas present- a weekend trip with my brothers and their families! Malachi woke up giggling the morning of our trip and was the most excited I have seen him in a very long time.

We had 14 people total and spent the weekend in a brand new rental called the Camel Condo at Ocoee Riverside Farms in Benton, TN. We were the first guests to ever stay in this place and let me tell you…it is pretty magical. I am going to reveal a few secrets as I tell you about our weekend!

Secret #1 There is a sloth in the living room named Flash. Like a real life sloth. He has a two story enclosure and the second story of it is inside the living room. Flash is paneled behind the glass but spent the whole weekend chillin’ with us.

Secret #2 There are hidden bunk rooms for the kids. To get into them they have to open the unsuspecting wardrobes, climb through the coats, and push on the back wall/hidden door.

We didn’t tell the kids and wanted to let them explore and discover them, but I also didn’t want Malachi to feel excluded from the process and sharing in their excitement. So we let Jake and Malachi go hide in the hidden rooms before we brought the rest of the kids in.

Secret #3 There are windows in the floor of the hidden rooms that look down into the camel and kangaroo enclosures in the barn below! The kids spent hours watching the animals, the animals curiously peeking back up at them!

Secret #4 There is a secret 23 ft tunnel that connects the hidden rooms that is filled with exotic fish tanks. This was one of Malachi’s favorite places because of the low lighting.

Here is a quick video for you, and you can see Ed the camel through the window below:

Secret #5 The beds are hanging from the ceiling. This was a little complicated for Malachi so he and dad drove back to the house each night (just a 5 minute drive), but we let him play on the beds during the daytime. And Levi thought it was so special that just he and I got to have a sleepover each night. We had to balance being excited for the one child and downplaying the excitement when Malachi was around so he wouldn’t feel excluded.

Side note: this was a delicate situation for us as parents; we presented this as an exciting thing to Malachi that he could have mom or dad to himself each night at the house and let him choose. Thankfully this worked and he didn’t feel like he was missing out.

Aside from the place being absolutely immaculate and so incredibly thought out, they have some pretty awesome experiences you can book. We all booked a farm tour which includes interacting with most of the animals. I will let the pictures do the talking.

We frequent this farm often, and the animals ALWAYS think Levi’s hair is hay. It cracks me up every time. This llama is my favorite animal on the farm due to his lack of social etiquette.

We also spent time with exotic birds, kinkajous (honey bears), coatimundis, swans, emus, and so many other fun things. Some of our crew rode camels and some rode horses and ponies.

But more than all of that, we created some pretty special memories together. Card games, bonfires, and lots of catching up.

If you are ever in East Tennessee I can’t recommend this place enough! The owners are friends of ours and really amazing people. They also have covered wagons you can rent to stay in and a house on the river. Here is their website if you are curious: https://ocoeeriversidefarm.com/

And the link to the AirBNB for the camel condo: https://www.airbnb.com/rooms/656097203443410530?adults=1&children=0&infants=0&pets=0&check_in=2023-01-02&check_out=2023-01-07&source_impression_id=p3_1671421578_zNOFPsDjCVtVINQw

This weekend was full of fun moments, but also full of reality checks. Jake and I attempted to include Malachi in every adventure that we could and our bodies physically did not handle that well. My muscles have been quivering with exhaustion from scooting him through tunnels and secret passages. I want to give him the world, and even though these adventure are still slightly attainable, there is going to be a day in which we will have to make hard decisions about what we say yes to.

Every year when Christmas music comes on I find myself transfixed on the words. So many of those songs become worshipful for me as I am reminded of the great gift of Christ. There is one particular line that my mind keeps clinging to this week and it comes from the song ‘O Holy Night’.

A thrill of hope the weary soul rejoices
For yonder breaks a new and glorious morn!

Weary Soul. Has your soul ever been weary? It goes beyond physical or mental exhaustion. It is a feeling of deep down hopelessness, like nothing you do will ever change the outcome. It is a feeling of being trapped with no solutions in sight.

The weary soul is a common trait of medical mommas. You hear so many bad reports that the idea of a good report seems unfathomable. To protect your heart from hurt you start to simply expect the bad and spend time bracing for the next blow.

Each and every time I have taken a ride on the ICU roller coasters with my boys I have experienced moments where my soul grew so incredibly weary. But I also experienced the thrill of hope these lyrics reference. The glimmer of progress, healing, and change. The bright eyes from the doctors that attempt eye contact rather than avoiding it. Talk of discharge dates and medication titrations.

And just like this song says, ‘a thrill of hope the weary soul rejoices’. Like a burst of fresh air from an open window, hope brings newness and fresh eyes. Hope excitedly expects rather than wishes and dreams.

So how and where do we find this hope? Even when I tried my absolute best, it wasn’t something that I alone could manufacture. There isn’t a seed you can plant that produces a crop of hope in your life. Hope is something that only God can produce in your life. It comes with recognizing His faithfulness through the hard parts. The Bible actually talks about it in Romans 5:

“And not only this, but we also celebrate in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.”

Tribulations=perseverance/longsuffering=proven character=hope

Hope is a breathe from the Lord when we continue to turn to him in the moments we are short on air. It is His gentle reminder that we weren’t made to do the hard parts of this life on our own, and He is ready and willing to walk hand in hand with us through the valleys and the mountaintops.

The thrill of hope is what keeps me going. I know that my children will be healed fully, either on earth through a miracle or on the other side in heaven. Without that knowledge the burden that I carry would be too much for me.

The thrill of hope allows my weary soul to rejoice even in the hardest chapters.

“And hope does not disappoint” because it keeps our eyes focused less on the seen and more on the unseen.

I am rambling now so I am going to wrap this up. Thank you for checking in on our family. We are so thankful for our community that offers love and support!

Sincerely,

Leah

The highlight of our week was Malachi getting his new “boots”! These boots are called ankle-foot orthotics and are specially molded to his foot to help keep them in the correct position and fight his spasticity. Without them, Malachi’s brain would miscommunicate to his muscles telling them to pull his feet up.

Jake and I had to make the hard decision many years ago to focus all of our decisions on quality of life over quantity of life for Malachi. We will continue to fight in every way possible to increase both of those things, but sometimes we have to choose. Malachi’s legs and hips are a very good example of that decision. Both of his hips have been pulled out of socket for years and are floating out of position. We could surgically repair these but statistically his brain would continue to tell those hip ligaments to keep pulling and they would likely slide out of socket again.

At this point his hips are not causing him pain, and aside from not being able to bear weight on his legs he is not affected. So we continue to not pursue the corrective surgery as it is a very extensive one and hard on medically complex children. Because Malachi is non weight bearing his feet have always been shaped a bit differently and everything has to be extremely customized. We lovingly call them his marshmallow feet. Right now insurance allows a new pair of AFOs every year or so.

Malachi was so excited with anticipation to get his new shoes. He picked Spider-Man themed at the fitting and he giggled the whole drive to pick them up. I dressed him in full out Spider-Man so he would be all coordinated for the big day.

After lots of modifying and final touches we rolled out with these beautiful boots. I put them alongside one of his first pairs from 1 year old Malachi for reference.

Seeing him get excited about new things is one of the biggest joys in my week. The unknown of what he is getting for Christmas is driving him crazy, and of course I keep bringing it up to help build the excitement. Malachi joy is such a blessing to me.

Levi has been embracing his new bedtime routine with lots of emotions, but we are making progress.

One thing he is always sure to prioritize is our “Levotions” (family devotions) each evening. He is a sponge for the things we have been talking about. We cleaned out the playroom this week and he re-discovered some musical books with children Bible songs in them. He has locked in on “Jesus Love the Little Children” and I am not exaggerating when I tell you we have listened to it hundreds of times this week. He even snuck it into the car when I wasn’t looking so he could serenade me on our hours long car ride. But in all honesty, is really is sweet to hear his little voice belting it out.

This weekend has been a challenging one as we have packed in lots of things on the calendar.

Saturday was the high school girls soccer banquet. I think this is our 11th season of coaching at the school, and each season I am even more grateful for the unique gift of coaching together.

Then tonight we had the youth over for their Christmas party. We still try to have them over for dinner and Bible study once or twice a month. We had several boxes of leftover graham crackers from our last event that were expiring so we came up with a fun challenge for them to create a Bible story with the supplies we gave them (leftover candy from our fall event) and we would vote for a champion. The finished products were actually pretty impressive. And I definitely underestimated the mess.

This one is the story of the young men lowering their friend down through the roof of the home Jesus was teaching at.

And this one is Moses parting the Red Sea, being chased by Pharaoh and his army.

Truthfully, we overextended this weekend. And even though I am very aware that I am the one who overbooked the schedule I tend to develop an eye of bitterness. The devil starts to plant thoughts of resentment in my head for the added responsibilities these types of weekends can bring.

This morning I was getting ready for church and I felt that bitterness creep in thinking about the to-do list for the day. And then I let the internal dialogue continue to fuel the fire.

It wasn’t long before I successfully turned myself from creator to victim of this tough schedule.

And in turn I successfully turned myself from servant to consumer, “deserving” things rather that simply serving.

And as I finished getting ready God placed a very specific phrase from a verse on my hear: “He emptied Himself.”

As the words played in my mind and heart I knew it was a gentle nudge from God to open up my Bible and read.

Philippians 2:5-8 Have this attitude in yourselves which was also in Christ Jesus, who, as He already existed in the form of God, did not consider equality with God something to be grasped, but emptied Himself by taking the form of a bond-servant and being born in the likeness of men. And being found in appearance as a man, He humbled Himself by becoming obedient to the point of death: death on a cross.

And as I read I was overcome with such a feeling of love for Christ and the gift He is. He set aside His privileges as King to come and serve. And when He served He did so in full humility, emptying Himself as an act of love to others and bringing glory to the Father.

Sometimes we needlessly empty ourselves on fruitless, worldly efforts. But other times we have beautiful opportunities to empty ourselves for others, knowing that our sacrifice is bringing glory to God. My world is full of those moments to empty myself for my children, and while that is a blessing it also introduces more opportunities for the devil to try to refocus my eyes on “me”. What a great challenge in self control for my heart to practice.

Much love,

Leah

Let’s start out this post with handsome pre-teen Malachi sporting a new hairdo, styled by his buddies. He is going to be 10 years old in exactly two months!

He had temporary blue tips and everything! He loved the process and seeing him smile so big blessed me. I am thankful for very sweet friends who think to include him in even the smallest things.

And Levi, of course, got to put a little blue in his hair too.

This year we decided to focus a portion of each evening on Advent, a season of reflecting on God and the gift of His Son. We are using a family devotional book titled “The Advent Jesse Tree” by Dean Lambert and we sit down as a family each evening to read the Word together and put a new ornament on the tree that reflects something God has done for us.

Both Malachi and Levi are thoroughly enjoying this and listen so intently. I asked them one evening this week: “Do you know what gift God sent to us to show us His love, even though we don’t deserve the gift?”

Levi nodded yes excitedly and with such gusto proudly answered: “A COW!”

Watching a child learn is something I didn’t realize I would enjoy so much. Especially when they are unfolding truths about God.

This week someone asked Levi if he was excited about Santa. We don’t do Santa or other imaginary characters in our home for a few reasons, but the main one being that we do not want to muddy the waters between truth and fiction. We talk a lot about heaven in our home and the promises of God and when the time comes that we need to rely on those promises I don’t want there to be a speck of doubt in our family of what is real. There are so many other reasons that led us to that decision, but that is a conversation for another day.

Levi’s response: “We don’t talk about Santa in our family, we talk about Jesus.”

Hearing those words come out of the mouth of a 5 year old unprompted by me gave me the chills. And what fuel it was to my soul to keep taking discipleship in my home seriously.

This week I tackled the bottom pieces of the to-do list…those few items that I keep pushing off and hoping they will magically self resolve before I have to attempt them. There are many hidden hoops to jump through in this world and I don’t always have the energy to jump. There is a fight in this world that you don’t know exists if you aren’t immersed within it.

The insurance battles would blow your mind. Things like a shower chair for me to safely clean Malachi are deemed as “comfort items” and therefore “not medically necessary”. I appeal. They deny. I appeal again. And round and round we go.

Malachi’s insurance will cover incontinence products (diapers). But none of the diaper companies will take our insurance- an elimination process that took me hours to complete. So we end up paying out of pocket for so many of these things that insurance says they cover.

Levi had another g-tube pop this week; this is the third one since October. We get four for the entire year and we are supposed to change it out every three months. Clearly there is a defect with the tube batch we have been sent, as he is only using the tube part time and is very careful with it. But rules are rules with insurance and to get another replacement to have for peace of mind costs $160.

We have been in this world for almost a decade so it has become strangely normalized to do the hoop jumping. But the bitterness if creates within me is still very real.

This week I sat down to work on Levi’s school paperwork. The form had a medical history question and a very small space for the parent to list the history. Obviously this wasn’t enough space to list even a brief summary of Levi’s life so I sat down to focus on typing a page (or three) summarizing Levi. The more I typed the more I remembered how truly far he has come.

We are in a world full of miracles but also a world filled with so many miracles in waiting. Trusting in the timing of God is such a challenge, and something I have to daily choose to do.

I started reading in Luke this week, attempting a chapter a day leading through the life of Christ. There are 24 chapters in the book so by the time you go to bed Christmas Eve you have reflected on the gift of Christ as our Savior.

I have always been fascinated by John the Baptist, but it wasn’t until after I became a parent that I began to truly appreciate his parents and their role in God’s plan.

Luke 1:6 tells us “They were both righteous in the sight of God, walking blamelessly in all the commandments and requirements of the Lord. But they had no child, because Elizabeth was barren, and they were both advanced in years.”

Zachariah and Elizabeth were living a life that was pleasing to the Lord. And then comes that word…BUT…the word I have grown to loathe. It is the word I have heard roll off the tongues of doctors and surgeons dozens of times, taking the hope that I carried and shattering it yet again.

“It opened his airway a little, BUT it isn’t quite enough for him to go home without a trach.”

“He’s alive BUT it isn’t looking good.”

It is the less than subtle transition word that takes things from beautiful to devastating. And even in this Biblical narrative we see that living a righteous life does not exempt us from the “BUT”.

How often do we convince ourselves that we can earn the good things from God? We treat righteous living like a formula to produce comfort and success rather than it simply being a love language to our Father.

God could have blessed Zachariah and Elizabeth at any time with a son, but He had hand chosen them to be the parents of the messenger and forerunner of Christ (foretold in the books of Isaiah and Malachi). His timing is always perfect, even when it doesn’t happen in the frame we foolishly believe it should.

The Bible tells us time and time again about the trials we should expect to face. John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. BUT take heart! I have overcome the world.”

In this season of advent, focusing on the excitement of what was to come, I am choosing to change the lens of my unanswered prayers. I choose to believe that our “not yet” miracles are because God is working on something immeasurably more than all I can ask or imagine (Ephesians 3:20).

Much love,

Leah

We kicked off the week with a day of therapy appointments and a visit with the epileptologist (seizure doc) for Malachi. For any new readers, here is a very basic summary of seizures in the Carroll household.

Levi’s Diagnosis: Complex Partial Epilepsy. Levi has just one seizure type and it is currently being controlled with medication. Our treatment plan is working so we will not be changing the regiment until it stops working so well! Next month will mark one year seizure free with his medications on board.

Malachi’s Diagnoses: Lennox Gastaut Syndrome also known as LGS (multiple seizure types that develop throughout lifetime), and intractable epilepsy meaning his seizures can’t be fully controlled with medication. Malachi’s seizures started around 9 months old and have evolved tremendously since then. He is up to four different seizure types, and we have three controlled right now. But he is still having 4-6 seizures a day, even with three different anti-convulsants on board every morning and evening.

Could we get more seizure control? Possibly. But every time we try to change medications we end up exchanging our interactive Malachi for a sedated one, even after the titration period is up. The reality is that Malachi’s seizures are a symptom of brain damage, and that is something we can’t fix. So much of our decisions for him are filtered through a quality of life flow chart that I have made up in my brain. Sedated, seizure free Malachi is just not a quality life for him.

Right now we are in a content spot. Yes, he is having seizures but we see to be in a safe-ish place with them so we will continue the medication regiment that we are currently on.

Let’s talk honestly for a quick minute…Mom take.

People with LGS are 24 times more likely to die prematurely. Granted, there are lots of factors in that statistic but we are very aware of the gift that each day on earth with Malachi truly is. Statistically seizures are one of the most life threatening things on our radar. So dealing with them daily continually threatens my emotional stability in so many ways.

Changing gears.

We packed so much fun into this week! Due to sickness in extended family we ended up staying local for Thanksgiving. We aren’t huge holiday people but like to create memories and cherish our family time with just the four of us. We spent the day riding around on the little truck and smashing our old pumpkins in front of a trail cam to see what animals would come visit.

We also spent lots of time outside playing on the playground and burning some energy.

The day after Thanksgiving we loaded up and headed to the local tree farm! It is run by the family of one of Jake’s former students and they are always so friendly and sweet. You choose and cut your own tree for $25. Both Levi and Malachi were absolutely giddy on the way to pick out a tree.

Malachi has a lot of opinions when it comes to Christmas trees. Jake tried to talk him into a “Blue Ice” tree and Malachi signed no. He signed yes to a very soft needled tree but it was too fat for our space. So after negotiations we settled on a skinny, tall tree.

We brought it home and dressed it up, much to the boy’s delight.

Levi started his basketball league again this week and was eager to get geared up for the game. He was a bit more focused since last year, so that is progress I guess haha. It is still like watching coaches try to herd grasshoppers.

This Thursday kicks off our bedtime revamp. Levi will be starting half day preschool after Christmas so the month of December is dedicated to changing sleep routines. Right now Levi goes to bed between midnight-1am and Malachi goes to bed around 4am (6am on Thanksgiving night). I put Levi to bed late so I can keep both boys on the same wake up time range and try to squeeze in a few hours for myself.

But with preschool starting Malachi and I will need to leave the house to drive Levi to school by 7:30 each morning. I am not convinced I will be able to adjust Malachi’s internal clock, but by golly I am going to try. We are also subsequently going to have to start inching medication times and feed times around so I can medicate Levi before leaving for school each day. We welcome any prayers for a peaceful transition month.

Psalm 37:3-7

Trust in the Lord and do good; Live in the land and cultivate faithfulness. Delight yourself in the Lord; And He will give you the desires of your heart. Commit your way to the Lord, trust also in Him, and He will do it. He will bring out your righteousness as the light, and your judgment as the noonday. Rest in the Lord and wait patiently for Him;

The amount of beautiful reminders in this verse are absolutely amazing. There is so much simplicity and peace in these verses.

Trust in the Lord and do good: Our calling is to trust God enough to live a Spirit driven life and do good works which He prepared in advance for us to do (Ephesians 2:10)

Live in the land and cultivate faithfulness. Wherever God has placed us, and whatever situation He has placed us in, our focus needs to be on cultivating faithfulness which will then produce the crop (a heart of contentment).

Delight yourself in the Lord; And He will give you the desires of your heart. This isn’t a genie in a bottle type situation. But rather, the more you delight yourself in the Lord the more your heart’s desires will reflect Christ in you. When you are delighting in God and His goodness it strips us of the unhealthy opportunity to delight in ourselves.

Commit your way to the Lord, trust also in Him, and He will do it. Do I do this enough? Commit my ways to God with complete confidence and trust?

But those final words are the kicker for me this week…

Rest in the Lord and wait patiently for Him. What does “resting in the Lord” look like? I think that answer is going to be different for each of us, but I can admit to you that I do not do this nearly as much as I should. But also being honest….resting in the Lord feels like maybe exactly what I am craving right now.

We are being asked as a family to wait patiently for so many things…healings, bodies, psychological wounds. Patience has been a personal conviction of mine, and one God continues to press me on over and over again in His Word.

I had to erase a whole paragraph because it looked like jibberish from my jumbled brain. And I have fallen asleep staring at the screen at least 5 times now. I really, really want to write a better devotional for you all but my brain is not cooperating. I thank you all for taking the time to check in on our family and for keeping us in your prayers.

Much love,

Leah

Our little Levi is officially “a whole hand” as he says it. I told him that he could choose his birthday dinner and after lots of deliberation he said “I want a steak in a restaurant that I don’t have to share with anyone else!”

They not only brought him out his own tiny sirloin steak but also a dessert for all of us to share. And Malachi loved it too.

His other request for his birthday was to eat a turkey sandwich in dad and mom’s bed. His little grin as he lounged back against the pillows and took that first big bite was precious.

The fact that both of Levi’s birthday requests involved food reminds me of the many blessings and miracles we have been given in his life. So many kids with paralyzed vocal cords can’t eat, drink, speak, or breathe on their own. And our little warrior is verbally asking to eat a steak on his birthday…the exact birthday that is the marker for this difficult diagnosis to be considered permanent. That is a God moment for sure.

I love the simplicity of children and how even the smallest things are such a big deal. Levi had a wonderful birthday with fun surprises from friends, a new scooter from grandma and a birthday card from Grammy.

The boys both had a trip to the dentist this week, which is always an adventure. Levi’s medical PTSD flares like a bonfire and Malachi has never liked things touching his mouth so they keep everyone hopping. Did you know that seizure medications can cause some pretty intense issues with teeth? Malachi takes 3 anti-convulsant medications (so 6 doses a day) for his epilepsy and Levi takes two larger doses a day for his. Watching their teeth and addressing the issues, especially with Malachi being non-verbal, is a top priority.

You likely already know this, but Malachi had to have 15 of his 16 teeth surgically removed as a baby due to lack of enamel. He has had capped teeth for years and those are now getting pushed out of the way by incoming adult teeth. What wonderful growth and progress for us to see his real teeth again!

The boys also had their weekly therapy at the horse barn.

And lots of time at home to read books, catch up on laundry, paint, and play.

Tomorrow we head to the hospital for some appointments and then we are looking forward to a delightfully boring week with Jake off from work. We have started trying to decide what our family service project with be this year; I am feeling led to do something for a NICU family again but I am still praying for God’s leading. In order to fund our project each year we go around the house and “shop” for things we don’t need anymore that we can sell and donate the money towards our project. It is always a fun activity that the boys both seem to get into and helps keep them focused on looking to give to others the way that Christ did. So this week is purge week as we hunt for things around the house.

We are also working hard to fill all the nativity orders for the youth group. Check out the batch we finished this evening!

We still have a few more dozen to knock out, so we will be having some more work days here at the house to let the teens finish those. I am so proud of their hard work.

So another birthday in the Carroll house means another walk down memory lane, leading to some really hard moments for me. As I have said before, the day that they were each born was one of the best and yet most traumatic days of my life. Levi was born 6 weeks early, weighing just 4 pounds 8 ounces. The 7.5 months leading up to his birth I was followed very closely by doctors and continually told that while small, he was healthy and progressing well. We were at the doctor every Monday, Wednesday, and Friday for tests and monitoring as well as shots every morning and evening. And eventually I had another placental abruption that required another c-section under general anesthesia. Jake and I both had to miss the birth of both of our children.

We were given the opportunity to interact with Levi in his incubator for just 6 minutes before he was whisked away in an ambulance to a higher level NICU. And the pendulum flew from happy new mom to grieving mom. Levi spent his first three nights alone with his nurses before I was released and finally able to get to him.

If I am being perfectly honest with you, the mom guilt surrounding Levi’s birth is so incredibly thick. I recognize that there really weren’t many things that I could do differently but there are a few of them that my brain can’t release the guilt of. And birthdays trigger those in a profound way.

It took the specialists 14 days to figure out what Levi’s true diagnosis was. In the meantime he was treated like a preemie in the NICU, none of us fully understanding the magnitude of his true condition. He was on a ventilator and off a ventilator, on oxygen then trialed off oxygen, on CPAP and off CPAP. Round and round we went trying to monitor progress that in the end his diagnosis would have never allowed.

This video is a perfect example of the mom guilt I carry. Levi had been on CPAP for most of the day and they decided to trial him off of his oxygen. As I look at this video now I can see so many red flags of a child struggling. Yet there I am, completely aloof and singing to him as I tried to pretend like my baby was going to be just fine. I knew better. I knew his color was off, I knew those retractions were out of this world, and I didn’t intervene.

When I look back at this video the questions my mind wanders to the thought, “Is THIS the moment that he was under supported and his brain started to die off? Is THIS the moment that the oxygen deprivation attacked his optic nerve and this is the moment that is causing him to lose his vision in his eye? Is THIS the moment that caused his cerebral palsy? His epilepsy?”

I simply sat next to my son and sang Jesus Loves You, caught in a world of denial and longing for that eye contact from my newborn to assure me that he was going to be okay. But I remember deep within my soul I felt panicky, knowing that something was very wrong.

Did I do enough for my son? Did I advocate hard enough? Was I present enough physically, mentally, and emotionally?

The mom guilt is suffocatingly thick each time another birthday comes as I run through the what ifs.

I have been all over the Bible this week, spending time in Romans again.

“The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.” Romans 8:6

And reading this verse made me really contemplate who the governor of my mind is. The pretty answer is “God”, but is that an accurate answer in my life?

Our mind will be influenced by our flesh, but at what point does it cross over into us being governed by it? I would say that this week I allowed myself to drift away from the Lordship of Christ and lean in towards my flesh as I reflected on Levi’s brith. I allowed myself to be governed by it, concluding that there is something I could have done that would change the story that He is writing now.

God is the author of Levi’s story, and not a thing will happen (or has happened) to that child that is outside of the will of God.

A mind governed by the Spirit is life and peace.

My prayer this week is not only that I can keep my mind focused on the Spirit and its work in our life, but that I can do a better job spotting the subtle shifts that it tries to take towards the flesh.

Much love,

Leah

I am going a bit cross eyed staring at the screen tonight so please ignore my grammar errors and crazy thought trails. We just pulled in the driveway after an adventure filled trip to Ohio!

Sickness in our small town is so rampant that they closed the school system last Monday. With this bit of information and an upcoming trip we decided to hunker down and try to dodge germs. I kept the boys at the house most of the week, even canceling therapies as the boys weren’t 100% yet. Our lock down paid off and on Thursday the kids and I headed north. Jake had to work and we do all that we can to preserve his days off for long term hospital stays and surgeries.

But we did get haircuts for the boys. They were long overdue, so I did a before and after for you.

Both of the boys were giddy with excitement as we pulled onto the highway for the 6 hour drive! When we finally made it to Skyline Chili (one of our favorite hometown restaurants) Malachi and Levi were all smiles, knowing we were almost to our destination.

As we passed the hospital I used the moment as an opportunity to remind Levi that not all Ohio trips equal surgery. Here is how that conversation went.

Me: “Wave to the hospital Levi! You don’t have to have any surgeries this trip!”

Levi: “Will my surgeons be sad that they won’t see me?”

Me: “No, they have other little kids that they will be helping.”

Levi: “I feel so sad for those other little kids that have to have surgery.”

Sweet little boy. Such empathy for others.

If I am being honest, I was pretty anxious about this trip. Knowing that there was a great potential that we could arrive in Ohio and then manifest some crazy sickness made me pack a bit differently. I loaded up lots of worst case scenario machines (oxygen concentrator, pulse ox, etc) just in case. Thinking through all of the smaller items that need to also be packed can get overwhelming…tape, cannulas, sensor strips, gtube extensions, formulas, feeding bags, ice packs, bottles, medications, syringes, diapers, and so much more. And so many of our things are specialized so running by the store to pick up what we forget just isn’t an option.

We arrived around bedtime Thursday night and tried to get settled. My dad has a guest room in his basement that is set up perfectly for a special needs situation; there is a sink and a fridge in the room off the guest room. I started by stripping the bed and putting a waterproof picnic blanket underneath in case we had a feeding tube incident, which sure enough we did! That night I fed the bed (the formula poured out of the sides of the extension instead of making it into his belly, but thankfully the waterproof blanket kept it from ruining their mattress.

Our days were filled with lots of family visits. Both Jake and I are originally from Ohio and most of our family has remained there. So we were able to visit all parents, grandparents, great grandparents, several cousins, and so many more thanks to my cousin’s wedding on Saturday!

Levi is so impressed that great-grandma has an elevator in her house (assisted living facility).

Both boys did so well at the wedding, staying polite and quiet during the ceremony and adapting well in the reception. The music started and Malachi started to get a bit uncomfortable and we knew it was time to quietly step out. His little brain was on overload and usually that leads to a large seizure.

Malachi was caught off guard by how many people at the wedding knew him. It was held at a church that fervently prays for Malachi so several people came up to him saying “Is THAT Malachi?” Watching his little grin made me so happy. He felt like a celebrity.

They loved the idea that they were my wedding dates for the night. It was the first time they have been to a wedding and Levi’s narrative made me smile. He kept asking “Is it time for the wedding yet?” All throughout the ceremony. On that note, the concept of a wedding is hard to explain to a child haha. Malachi did great through most of the night but started to get a little overstimulated after a few hours so we had to sneak out.

Little Levi turns 5 years old today (Monday)! He woke up around 3am singing “Happy birthday to me” then drifted back off to sleep. While we were in Ohio he was able to celebrate with family. Jake and I don’t do formal traditions for birthdays so even the concept of blowing out a candle was new to him.

He also got to try a donut for the first time! And Malachi got to try tasting snow after a surprise dusting.

Our trip was wonderful and we all had such a nice time seeing faces we hadn’t seen in a long time.

It also was a reminder for me in many ways about the reality of the limitations our world is going to bring in the near future. Lifting Malachi up and down for four days solo took a toll on my body. The bigger he gets the more difficult adventures like these become. It also was a reminder about how limited we are by medical schedules. All of our adventures had to be planned around feeds and medication times.

These thoughts spiral me into a sense of mourning, knowing that Malachi absolutely loves these adventures but my ability to provide him with these trips is limited. Malachi was a rockstar, trying so hard to keep things easy on me. He has the ability to hold his bladder and his poop (something we discovered this year in the process of potty training Levi) so before we go into an environment that will be hard to change a diaper in I ask him to empty himself so he can hold it.

Romans 8:18-21;24-25 “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God….For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.”

If I am being perfectly honest, the reality checks from this weekend spurred some unexpected grief in my soul. Whenever that spark hits my lens in which I view everything follows the flame and tries to take over my mind. I had one moment this weekend where the frustration of reality caught up with me and I felt my eyes fill with tears. In our world in Tennessee we are able to feel like our day to day is normal. But when I am in new environments surrounded by typical it highlights how abnormal and complicated our world truly is. I don’t know how to explain it. It is almost like the typical reminds me of what we have truly lost…things I didn’t even know to mourn over are now brought to light.

In that moment I prayed for God’s peace and He immediately reminded me of the word “hope”.

As hard as this life and calling is, we have been given a gift of anticipation and hope in measures that others don’t get. The things that others celebrate here on earth we will have the treasured gift of celebrating in heaven with our Creator. This verse above talks about waiting in eager expectation and I can absolutely assure you that I am in that camp!

And this verse about creation being “subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.”

Wow. What a powerful verse and a much needed remind about the role of hope in faith. And how important patience is in our walk with the Lord.

Thank you God for the gift of hope. It is the fuel that kept me going this weekend as I thought about all the many “firsts” my Malachi has to look forward to in heaven. And I am thankful for an imagination that let’s me picture that sweet smile on his face as he stands boldly at the throne of God.

Much love,

Leah

We tried hard to escape the head cold germs from last week but they came ready for round two. We had a very special needs night that has made me laugh due to the sheer ridiculousness of it, so I thought I would share it with you.

On Wednesday evening Levi was a bit more emotional than normal so my suspicions were up that something new was brewing. He had fully recovered from the cold but looked to be getting sick again. In addition to looking rough, his stridor (noisy breathing) at night was loud enough to hear from across the house, which is a sign that his airway is cramped (swollen or excess drainage being the cause).

As so many of our adventures do, this one requires a bit of a snapshot into our world. For the last several years we have had unconventional sleeping arrangements after a scary incident with Malachi being in a bed by himself. Jake sleeps in the master bedroom and I am in another bedroom with a bed with a firm mattress that doesn’t shake with movement for Malachi and I to share.

Malachi’s seizure activity at night makes us extremely uncomfortable leaving him alone. He can’t sleep on his back due to his reflux issues and his inability to clear vomit should he throw up in that position. So each night I position him very specifically and make sure a part of my body is touching his so I can feel if he seizes at night. When Malachi seizes he has incredible strength and contorts to the right. Each night he has at least two seizures like this, requiring me to rescue him by pulling his head out of the pillow until the seizure stops. I took a picture for Jake a few weeks back when Levi and I were heading to Cincinnati for surgery to help him understand the new sleep concerns.

Malachi is 9 years old but we have to maintain the vigilance of having a newborn since his body can’t escape the dangerous situations he gets himself into.

Also in that bedroom is a twin bed with sides to keep Levi contained while he sleeps since he is hooked up to his feeding pump at night. There are nights that I am convinced that the feeding pump is my arch nemesis, alarming for kinks in the tubing more than 6 times some nights this week. Levi is a wiggle worm when he sleeps.

That night I was able to get Malachi into the bed by 2am, something that I haven’t been able to successfully do for several weeks. I was relishing in my small victory as my head hit the pillow and my eyes closed. Within thirty minutes Levi abruptly sat up screaming “I don’t want to go to the doctor!”. I was desperately trying to quiet him down before he woke up Malachi and when I asked him what was wrong he said that his ear was hurting. When Levi gets worked up his narrow airway gags him and he starts heaving, ready to vomit.

You must be reading this thinking, I thought she said this was laughable and none of this is funny. Patience my friends.

I needed to go pull Motrin for Levi but didn’t want to unhook his feeding pump to bring him with me. He was begging to lay in “the big bed next to Malachi” so I put him and his feed bag in the big bed and turned on the Waltons for him, one of his favorite shows. I ran to grab Motrin and a water flush and ran back in and medicated Levi through his gtube. This is a process mid-feed with lots of thinking but I finally got him medicated and somewhat calmed down. I then slid into the bed between him and Malachi, trying to keep everyone in a sleepy state.

I took a deep victorious breath, so happy to have my head hit a pillow again when I suddenly felt a warm liquid seeping through my clothing. I sat up and realizing that I was laying in a puddle of pee. Levi in his emotional panic had wet the bed, peeing all over the blankets AND somehow peeing all over Malachi’s pillow. I watched in horror as the liquid inched closer to Malachi’s hair, stopping with about two inches to spare. And by some miracle Malachi was still sound asleep.

So I made the executive decision that we would all just sleep in the pee puddle and figure it out the next morning. It was a long night, but Levi slept for a few hours. The next day I took him to the doctor and sure enough, he did have an ear infection. We started antibiotics and he is not 100% yet but getting there.

Levi was an emotional ball of nerves as we drove to the doctor. His medical PTSD kicked into high gear when we pulled into the parking lot and he started shaking uncontrollably. The pediatrician office that we use is so accommodating for our family and agreed to bring the doctor out to the parking lot so that I wouldn’t have to unpack Malachi and take him into a very germs environment and also to accommodate Levi’s anxiousness. Levi’s physical reaction to the doctor is so pitiful to see. We had gone through every detail of what to expect but as soon as he sees scrubs he loses his mind. Bless his little heart.

Malachi is still recovering from last week’s cold as well, trying to manage the post-cold cough that is lingering. With his system being a tiny bit off he has been running low grade fevers on and off throughout the week; this is pretty par for the course for him. But his oxygen levels have been GREAT and he hasn’t required any supplemental O2.

We spent the week knocking out chores at the house and trying to heal. And Levi preached some more sermons, of course.

If everyone can get healthy enough this week, the boys and I are going to attempt a trip to Ohio to see family and attend a wedding! I am sure it will be quite the adventure. We have been really wanting to do some fun Ohio trips so that Levi doesn’t always associate the state with surgery and pain.

We have been seeking God a lot lately on so many different things. It is almost overwhelming to think about the many things that we are mentally processing right now.

One of those things is schooling for Levi. There is a local grant that is willing to help fund a portion of his tuition at a small school in our area and we are considering enrolling him after Christmas for a variety of reasons.

1) Levi needs some autonomy. He needs something that is his. He is learning so many incredible lessons and such empathy from living with an amazing brother like Malachi; I think independence and personalized attention will be really good for him.

2) I am told to expect learning deficits from Levi due to his brain damage. Little known fact, Levi and Malachi share the same brain damage diagnosis called Hypoxic Ischemic Encephalopathy (HIE) and are complete opposite ends of the spectrum of that diagnosis. I firmly believe that Levi can learn if he is given the right environment that sees his potential.

3) As much as I would love to homeschool Levi, I don’t know that I am the person for that job right now. I am stretched so thin and dealing with so much mom guilt about not being able to give 100% to each of the things that beckon me.

This is still something we are actively praying about and seeking God on. But part of that process was touring the school this week. Levi was smitten and anxious all at the same time. This particular school has a very small class size and has accommodations in place for students that need a little extra help without the government incentives for special education. Just for some perspective, a student with Malachi’s level of complexity brings $7,500 from the government for his services in the public education setting. That money goes into a generic special education account for the county and isn’t always used for him specifically. This particular school that we toured seemed ready and willing to work through his complexities, like the feeding tube, physical restrictions, and his seizures.

This has been a season of life where I have been praying about very specific things but not getting specific direction from God. But in God’s amazing way He has been guiding me through several truths from His Word as I wait patiently (or impatiently sometimes) on that direction.

One of the things He continues to press on my heart is a call to clothe myself in humility. As I have been studying scripture this week I read one that has made me really think about the concept of humility.

Deuteronomy 8:2-3 “Remember how the Lord your God led you all the way in the wilderness these forty years, to humble and test you in order to know what was in your heart, whether or not you would keep his commands. He humbled you, causing you to hunger and then feeding you with manna, which neither you nor your ancestors had known, to teach you that man does not live on bread alone but on every word that comes from the mouth of the Lord. Your clothes did not wear out and your feet did not swell during these forty years. Know then in your heart that as a man disciplines his son, so the Lord your God disciplines you.”

I often get frustrated when I am not getting a clear direction form God, which highlights my need for humility. I operate like my timeline should be God’s timeline, which is a very arrogant stance to take with my Creator.

This verse is referencing the Israelites who left Egypt and spent 40 years wandering in the desert before God led them to the promised land. Talk about a season of waiting! But the purpose was “to humble you and test you in order to know what was in your heart, whether or not you would keep his commands.”

Seasons of waiting absolutely reveal what it truly in our heart. These seasons test our faith, our obedience, and our desire to give Lordship to Him. Our uncomfortableness highlights our true inner thoughts.

The literal bread from heaven (manna) sustained the Israelites each morning and each night. And in the same way, God sometimes gives us just what we need to get through the next few hours, including His wisdom and direction. And my frustration that stems from not having an abundance highlights my need for humility. He is God and I am not, and my impatience is revealing my heart.

But I also love the reminder at the end of the verse that the Israelites clothes did not wear out and their feet did not swell. Even in their moments of discipline God was still so good!

I am rambling now! I made the mistake of saving the devotional thought for the morning and all chaos has ensued. Levi has thrown up four times this morning and has had some other drama that antibiotics can often bring on. He is feeling crummy so I am going to sign off of here and snuggle up next to my sweet boy and listen to the rain.

Please remember both boys in your prayers this week, that we can return to full health. And pray for my patience as I wait on the Lord, cultivating a heart of humility in the process.

Much love,

Leah