If you have been reading my posts lately they have been saturated with a gloomy cloud of bad news that keeps following us. Believe it or not, this week life knocked us down yet again with all 4 of us testing positive AGAIN for Covid.

Last weekend Jake kept mentioning how exhausted he was. He spent every free moment napping, sleeping for 12-14 hours each day and still woke up talking about how tired he was. If I am being honest, I was not a trophy wife through that. I was running on 3-4 hours of sleep a night and hearing him whine day after day while taking on caretaker 100% of the time his complaints were becoming a point of contention. I was also getting over a cold and helping Malachi through his low grade fever. I snagged him the earliest doc appointment I could (Wednesday at 3) and tried to help him be as responsibility free as possible until then.

I took Malachi to the pediatrician on Monday where he was tested for Covid and RSV and in the process she did spot an ear infection so he started antibiotics. Both tests came back negative on Tuesday and we continued to monitor the fever (we were 6 days in at this point), which was staying low grade.

Tuesday night was a rough one and I finally got the kids both in bed and laid down in their bedroom at 4:00. I had been coughing and each time it woke up Malachi so I had been sleeping on the floor. About 45 minutes later I heard a faint noise coming from across the house, and Levi heard it as well and started screaming. I didn’t want him to wake up Malachi so I unhooked his g-tube from the pump as fast as I could and snatched him up and out of the room. I followed the moaning sounds into the kitchen and found Jake laying halfway in the master bedroom and halfway in the kitchen completely motionless on the floor. I asked him what was going on and he said “Call 911, I need to go to the hospital.”

I quickly called 911 and tried to figure out what was going on. Jake had gotten up to go to the bathroom in the middle of the night and started to feel woozy. He tried to make it across the house to get me and passed out in the process and when he woke up he was unable to move and could only see black. I checked his oxygen while we waited and it was fine but Jake was unable to even sit up. The EMTs finally arrived 30 long minutes later and came in to assess him. His blood pressure was dangerously low and as they were trying to figure out what was going on Jake started to pass out again. They loaded him up in the ambulance and took him to the ER. I packed a notecard with the medications he was currently taking and a timeline of this sickness he has been recovering from for the last 5 weeks. I also put down my name, phone number, and his social security number so they could contact me with updates in case he was unconscious.

Malachi stayed asleep through the situation and Levi was wide awake after they left. I got him calmed back down and back to sleep about the same time that Malachi woke up. Jake called me about that time to fill me in on the tests they were running (CT, X-ray, bloodwork, viral panel, etc). A few hours later he texted “Covid positive” and I was completely dumbfounded. Jake had already had Covid in late February and it was a legit Covid case- nothing mild.

I immediately gloved up and started disinfecting the house but in my heart I knew it was futile…we had already been exposed through the weekend with him. But the task took my mind off of things so I sanitized and prepped the basement for his quarantine. The hospital hooked him to some IV fluids and got his discharge papers ready shortly after lunchtime. I didn’t know how else to get him home so I loaded up the boys and a fresh mask for Jake and headed to pick him up.

I got him home and helped him into the basement, then washed my hands and got each of the boys out of the car. As soon as I carried Malachi in I could tell he was rapidly declining. I took his temp and he was at 103. At that point Levi was acting normal, but by sunset he also was running a high fever.

I had picked up some rapid at home test kits from the drug store while we were in town waiting on Jake to get discharged. I tested both boys and not surprisingly they were both positive. That night was incredibly challenging, as Jake was alone in the basement, fearful he would pass out. I put a baby monitor down there so I could watch him closely. I offered to move him up now that the kids were positive but he said he was more comfortable down there. The boys were burning hot and fever reducers weren’t budging the fevers. And I was running on maybe an hour of sleep from the night before. Everything just hit SO INCREDIBLY FAST! I set up camp with the kids in the living room and we did the best we could that night. I started notecards for each, trying to keep track of everyone’s medication routines. In addition to fever reducers and now added vitamins, each one of us is on at least one prescription antibiotic for the crud we have been dealing with leading up to this. Add into that Malachi and Levi’s regular medications. On our worst days I administer 45 different medications throughout the day.

I had antibodies from round 1 of Covid and also am fully vaccinated (since March). I was so hopeful I could stay virus free but by Thursday it was clear that was not the case. I administered a home test kit Thursday evening and was positive. By Friday the virus and sleep deprivation caught up with me and I was really struggling. Jake was slightly better but still struggling. Levi and Malachi were still randomly spiking fevers back up, and Levi was not holding down any feeds. We both lost our taste, smell, and appetite and a mental fog covered us both.

I had been updating Facebook as energy would allow and got a message from someone asking for us to contact them about the monoclonal infusion antibodies. There was a center about an hour from us that was offering them without a doctor’s prescription and even though the schedule was full they so kindly offered to contact us if they had anything open up on Saturday. They called us the next morning and we had appointments at 12:00! This was truly a God thing for Jake and I!

I felt safe enough to drive so we loaded the four of us up and made our way there. When we got there Jake was the first to get called out of the car and on his way out he managed to shut his finger in the door. He was in such a brain fog he couldn’t figure out what to do and knocked on the window for me to open the door and release his finger. By the time I figured out what was happening he had opened the door himself and I could tell he was in a lot of pain. I asked him, “Are you about to pass out?” And he shook his head no but as he walked off I could see he was struggling.

By the time he made it to the folding chair he was ready to pass out and they grabbed him ice. Then he apparently thought he was going to vomit so they dragged a trash can over. When he was stable enough they administered 4 subcutaneous shots into his belly with the antibodies and got him safely back to the car. My turn was much less eventful and after waiting an hour for side effects we were released to drive home. Jake said he could tell a difference within the hour. I am writing this about 32 hours after my shot and I feel so much better. Definitely still sick but definitely feel like I am winning the fight.

The boys are so so so tough through this round. It has been MUCH worse than the last Covid they had. They have been miserable, Levi waking up crying multiple times a night saying “Me SIIIIIICK” and burning hot with fever. Malachi’s seizures were out of control for the first 2 days; he was seizing harder and longer than I have seen in a long time. He was depleted of all energy and I was terrified that running these fever reducers so intensely might re-trigger his liver failure yet again.

So as of now, Sunday evening, here is where we are all at:

Jake- last night he had another bad night so we hooked him to a pulse oximeter overnight with the baby monitor pointed at the numbers for me to see across the house. His oxygen stayed above 92 throughout the night and he asked me to plug in the oxygen concentrator just in case. He has a tightness in his chest that was much worse pre-antibodies. His taste and smell is starting to come back.

Levi- is doing really well. Last night he slept decently for the first time in awhile. He has also gone all day only vomiting once, but we are running his feeds very small and slow for now. He has been fever free all day and not required any pain meds. He is definitely tired of being in this house but we are all too feverish to go outside and play.

Malachi- is still struggling. His oxygen levels are staying around 94 and his fevers have been controlled today. His seizures are calming down to his normal and he has been resting better the last two nights and taking naps throughout the day. He has not thrown up at all but has a lot of intestinal issues with this one.

Leah- since Thursday I felt like I had been hit by a truck. Very sore, running fevers, lots of head and sinus pressure. Thursday through Saturday were very bad but today I am feeling like I am on the other side. I am sure the vaccine shortened my symptoms based on what I am seeing with the boys. I have lost all smell, taste, and appetite and today I have been coughing so much less.

Aside from the physical challenges this week has brought, the mental challenge has been so much harder. These past few weeks have absolutely drained us physically, emotionally, and mentally. To have another big catastrophe hit our family is just too much. We have been trying so hard to stay focused on God but all of our attention has been focused on minute by minute care.

This weekend I received a message from a college friend and it had a photo of her mom who is currently struggling in the ICU with Covid and her husband by her side praying. The caption said “They are calling out your crew by name and I had to snap this picture of it. You have been on all of our hearts and my mom keeps asking for updates.”

Seeing the photo took my breath away and bubbled up so many emotions. I showed it to Jake and read him the caption and immediately he started sobbing. He told me that a few hours before he had been trying to pray but didn’t have the energy or mental clarity to formulate words. He said God pressed on him “It is not meant for you to pray over this, but for others.” When I shared the photo it was such a faith moment for him to see others that we have never even met lifting our family up to the Lord.

We have had lots of God moments this week, but right now I need to focus on my family. I hope next week we will be able to share stories of our healing with you. Until then, please continue to lift us up. We are so so so weary. We feel that we are under so much spiritual attack. We need peace.

We have had several people asking for tangible ways to help. Our church family has set up a meal train for our family so our family so food is covered. We have had friends mow the grass, drop off slushees, and bring goodies by. We are so thankful for our support system and have all of our needs currently met. We have never been one to ask for help, and still cringe at the thought, but also recognize that there is joy in helping others. If you want to help out with medical bills from Jake’s hospital ride, surprise gifts for the boys, or a movie rental on Amazon for them you can reach out to me at jacobandleah@gmail.com but please know there is no pressure and we are not in desperate need of anything at this time. As I always promise, I will be transparent if we ever reach the point where we are unable to pay our bills. I just know many of you have contacted us about ways to help.

Sincerely,

Leah

Malachi is officially out of liver failure! His enzyme count was 58 from his blood draw last Friday. Praise the Lord!

This week Malachi and I headed to Nashville for his re-scheduled appointments with his surgeons. Originally this trip was going to happen in late July and last 2 days, 3 nights. Malachi was ecstatic about this trip and when he ended up hospitalized instead he was very disappointed as we had already planned out the itinerary.

With Jake back in school we couldn’t really afford to take the full 3 day trip so I worked with the hospital to get his appointments on the same day on the two different ends of Nashville. Jake got a sub for one day so he could stay with Levi and Malachi and I left for Nashville late Tuesday afternoon.

Since we had less than 24 hours for our trip I tried to pack in all the adventure I could so Malachi would feel like we hit *most* of the things from his original itinerary. On the way to the hotel I stopped and picked up a Crumbl Cookie that just his style!

He absolutely loved it! And since I was on the recovery end of a cold he got the whole thing to himself! Too rich for my blood anyway.

We jumped on the hotel bed and then snuggled up to watch Frozen 2 together. There are a few movies we don’t watch often at home due to their intense content and having Levi around so this was a special treat for him.

We drifted off to sleep but the new environment and the anticipation of the adventures kept him up most of the night. Early the next morning we headed to our first appointment with the spine surgeon at his office. He used to work at the hospital one day a week and we would schedule our appointment to hit both surgeons at the same place on the same day. But he switched with a coworker and no longer did hospital appointments so we snagged one of the early morning ones so we could get in and out quickly.

My plan failed and we sat in the waiting area for 1.5 hours before finally getting called back for x-rays. You all would be shocked at how many different pronunciations we get for Malachi.

Mall-ah-chee

Mall-ee-chee

Mall-ack-ee (my personal favorite)

But this time around we heard a new one Mall-ee-she and it has a very foreign flair as it rolled off her tongue.

Malachi did great for X-rays as he always does and we headed to a room to meet with the doctor. Malachi’s spine is at a 45 degree curve which is still in the safe range. This is only 1-2 degrees worse than last year so we are happy. He said that often puberty is when they see this biggest change that warrants surgical correction. So until we see major change we will continue to monitor annually. He offered switching us to the hospital provider so we could avoid the two separate appointments and I very gladly agreed. I had planned three hours between appointments but at this point we were going to be cutting it close to make it across town to the next one 45 minutes away.

Malachi’s orthopedic surgeon is one of our favorite specialists and has incredible bedside manner. Unfortunately Malachi’s brain is telling a few foot tendons to tighten up and they do need surgical intervention. I explained about our recent medical issues, and particularly the liver failure, and we are going to try to postpone this surgery for a year from now if we can get away with it. If it gets much worse we will take him sooner. It will be an outpatient tendon release which he has had done before. “Routine” some may call it haha…we all know that routine doesn’t always happen with Malachi.

One of the oral medications Malachi was on pre-liver failure helped relax his muscles but we sadly had to stop that one since it metabolizes in the liver. So we really have no other options except for surgery. What is frustrating about CP is that these tendons were totally fine a year ago. His brain just recently activated those to pull tight. It is a battle he will fight for his lifetime.

With all the medical appointments done we had just 3 hours for some fun before heading back. I let him decide if he wanted to go to the zoo or the Rainforest Cafe and he voted to go to the Cafe. They seated us right next to the tigers, which he was giddy about. What we didn’t know is that the tigers were malfunctioning and instead of roaring noises they mechanically squeaked, like they needed some WD40. I told Malachi it was the baby tigers squeaking at him which seemed to be enough to keep him happy. His smiles in all of these pictures are such genuine smiles.

He truly enjoyed every minute there and we walked around to visit with all the animals and look at the fish. We stayed through 2 of the thunderstorms, covering his eyes for each one to keep the flashing lights from triggering a seizure.

We went from there to Build A Bear and Malachi got to choose the type of animal he wanted to make and an outfit. He chose a bear and a Batman suit and was so happy with the finished product. He was super sweet and this picture is one I treasure so much.

Then he went to the Disney store to pick out matching tshirts for him and Levi. He is very opinionated these days and having the power of choice is very important to him. Levi had picked out some things for Malachi on his Ohio trip so we had put that one in the original itinerary as silly as it sounds.

Finally we went into the middle of the mall and took a ride on the carousel. The only seat option for us to sit in together were the circular teacup seats. When the ride began it swirled us around so fast and hard I thought I might puke. My reaction set Malachi into giggles and it is safe to say only one of us enjoyed that ride!

We made it back home by 9:00 Wednesday evening and Malachi relayed all of his adventures to Jake and Levi, giggling as we talked about each one.

Thursday we recovered from our travel day and played on the playground with friends.

Unfortunately Friday evening Malachi started running a fever and has had one since. He and I also developed pink eye in both eyes so we are taking antibiotic drops and trying desperately to not give it to Jake or Levi. I am suspicious of an ear infection with Malachi, as driving through the mountains to Nashville has always messed with my ears. Levi has also frequently developed ear infections after Nashville trips. We will likely end up at the pediatrician tomorrow just in case since he can’t communicate the source of pain. I thought he was getting sick last weekend but aside from a sore throat it never progressed into anything.

Levi is still doing great. He is going a bit stir crazy in the house and finding lots of mischief to get into but he is also growing in so many ways. His vocabulary is so big right now and he asks so many questions. So. Many. Questions.

This past month has been a very difficult one for our family. We had gone through a season of calm, with very few unexpected medical issues and very few hospitalizations. I actually told a friend a few weeks ago that things had been eerily calm and I suspected a storm was brewing.

It was exactly one month ago that Malachi and I headed to the Emergency Room for his stomach blockage. Through all of that, as intense as it was, I felt secure in the hands of God.

As the weeks have progressed we continue to get hit with waves of sickness, new upcoming surgeries, and so many medical/medication changes. Right now I am administering 35 medication doses daily. I am keeping logs of all them to try to keep everything straight and life takes my full focus to make sure I don’t make a deadly mistake. Malachi has had diarrhea for over 30 days due to a vitamin for his liver. Each day asks a lot of each of us.

Jake and I had a raw and honest talk this week of how much we feel like we are under attack from the devil. Jake is still very weak recovering from whatever junk had ahold of him but the mental hold on us right now is pretty strong. We are each giving 100% but it doesn’t feel like quite enough.

We find ourselves craving normal. Even normal sickness. Just simply normal.

A normal weekend. A normal night of sleep. A normal hour. Our normal 13 daily medication doses. Normal poop.

We encounter storms often in our medically complex world but there are times we are called to set up camp and live in the storm for a bit. We call these the Job moments. The days when you can’t help but wonder what else is about to happen. We still fully believe that we are in the hands of God, but sometimes His hands pause in the storm for a bit and we begin to feel the elements.

When I am camping out in the storm I tend to have a looser grasp on my inner thoughts. This week Malachi slept one morning a bit longer than normal. I was up with Levi and watching Malachi sleep on the monitor and I couldn’t help but wonder if he had passed away in his sleep, as it was so odd for him to sleep that late. I started to go down the mental road of “what if” and it made me sick to my stomach.

Bracing for impact sometimes feels harder than the impact.

And there is so much danger in the bracing.

We aren’t called to focus on the what ifs, as they strip us of our faith in God and His plan for our lives.

But I admit that when I am camping in the storm I slip into those thoughts a tad bit easier than when I am simply just passing through the storm. I give footholds to the devil so easily that allow him to climb the walls I have put up against him in my life.

I am trying desperately to stay Jesus focused right now and just tonight I have had some sweet and tender moments with Levi that remind me of the importance of modeling a Christ centered life to my children. When I am in a dark place I try to be very intentional with talking about and to Jesus. I have a few Levi stories that might make you smile…

The first one is from a few minutes ago (yes, 12:45am) Levi stole my iPad and started pretending to type away. He looked at me and said “Me blogging mommy!” I asked him what he was blogging about and he said “Jesus!” What is special about this story is that he doesn’t know what I type on here, but that is what he wanted to write about.

Earlier today we went for a drive in the car and Levi said “Mommy, praise and worship music!” My car radio has been broken for months so we cranked up some worship on my phone and he sang his little heart out. I didn’t even know he had those words in his vocabulary, so that one touched my heart for him to be so specific. I even asked him: “Do you want Veggie Tales music?” And he said “No, praise and worship!”

The final moment I am hesitant to share with you because I am opening the door to some major parenting judgment, but it made me laugh a bit so I will end on it….I am not bragging about my methods on this one so don’t feel the need to correct me.

When Malachi is sick we set up a sickness station in the living room. Because of his brain damage when he gets fevers they trigger hot spots in weird placed on his body. So the only way to accurately get a temp for him is rectally. In the “sickness bin” I have a rectal thermometer that we clean with alcohol prep pads after each use. We keep these out of Levi’s reach but he has been extra fascinated with the bin this weekend. He has also learned how to scale things to reach whatever he wants.

Knowing this, I told him on Friday that if he ever touched that specific thermometer (Malachi’s butt thermometer we call it- super creative huh) that he would likely get very sick and have to go to the doctor. He has been popping everything into his mouth and the mental pictures I was seeing were not pretty. He has so much PTSD right now from doc visits and COVID tests that I assumed that would be enough to squash the temptation, and it did for two days!

But tonight as I typed the blog the little rascal climbed up on a bucket he snuck from the playroom and grabbed the thermometer. I turned around to see him examining it closely with his hands. I panicked and shrieked and he immediately started yelling NO DOCTOR NO DOCTOR!!!! I took him in to the bathroom and scrubbed his hands which he says is the only part of him that touched it. He was in hysterics by the end of the hand washing, convinced that he was going to have to go to the doctor. He was so upset that Jake came running out of the bedroom from a dead sleep to see what big catastrophe happened.

I tried to calm him down and reassure him that he would be okay but he wasn’t hearing any of it. I explained that he probably wouldn’t have to go to the doctor but he couldn’t get ahold of his emotions. I told him that we couldn’t take back touching the butt thermometer but we could pray and ask God to keep him from getting sick from it. He was all about that idea and clasped his little hands together and poured his soul out to God. His intensity made me smile (which I obviously hid from him) and we prayed that Jesus would protect Levi from the butt germs and help him stay well enough to not need the doctor. We also prayed that God would help Levi listen and obey much better.

I never imagined that I would verbalize a prayer to God for protection against “the butt germs” but here we are.

I snuck a photo because I knew I couldn’t describe the intensity of his little prayer any better than a visual.

Sweet precious little boy.

But as I look at this photo I can’t help but think of the smile on God’s face to see a 3 year old turning to Him in a moment when he is scared and feeling helpless.

And I am also challenged to continue laying things at the feet of Jesus and making sure I model that to my children. We weren’t made to carry heavy things. What a beautiful lesson to teach my children before they encounter the heavy things this world has to offer.

Please pray for our family. We are ready to pack up our campsite in this storm and move out of it’s reach. But we are waiting (impatiently) for God’s timing to match ours. Please pray for our endurance and strength, both mentally and physically. Pray for health in our family and that we all are back to 100%.

Thank you for taking time to check in on our family and listen to my ramblings.

Love,

Leah

I have mentioned the post-hospital exhaustion to you many times before, and this week it overtook us like a wave. Malachi’s stamina for anything that takes a lot of thinking or physical exertion is very diminished so we spent most of the week taking it easy at home and catching up on all the “things”…phone calls with insurance, cleaning, laundry, grocery pick ups, and paperwork. There is an incredible amount of paperwork in the medical momma world.

His new medicine regiment is still taking a toll on him. It makes him more lethargic, but also keeps him from sleeping which I can’t wrap my head around. He is sleeping only 4 hours each night. His seizures are also pretty nasty these days, but more on that in a minute. He still doesn’t have his color back yet which makes me a little nervous.

Now Levi on the other hand has the energy of a thousand Mountain Dew drinking children and has been doing circles around the rest of us. I had the house completely mopped and cleaned up and on Thursday he accidentally dropped a can of Pepsi from overtop his head. The can exploded and started spinning circles, and before I could jump on it like a live grenade it had done some major damage. It left a trail of Pepsi spray on all walls and furniture within 15 feet of the can. It somehow managed to spray everything at floor level and all the way up to 8 feet tall as it gained momentum. It also sprayed each person and dog in the house.

As I surveyed the damage I literally had to start laughing. What a metaphor for our lives right now. One day you are feeling good about how things are going, then BAM a Pepsi can hits the floor. I didn’t even know where to begin on that cleanup process.

This week I have been so incredibly thankful for our dogs. They have taken the brunt of Levi’s attention and built up energy, and done so with such submissive kindness haha. Shiloh even earned a silver medal from Levi.

I am also incredibly thankful for the playground and the trampoline. They have been the highlights of our days and having those things right outside the front door is such a blessing. This happy video will offset the other one that is about to come:

Malachi had another liver enzyme check on Friday but we have not heard the results yet. His seizures are very aggressive and lasting up to 4 minutes and I am so desperate to get him back on some of his former meds. We have to let his liver heal some more before that can happen, but the helpless feeling seeing him get stuck in such rough seizures is difficult.

But words cannot describe how happy Malachi is to be back at home with his family and his dogs. This is most definitely his happy place. Me too buddy, me too.

On Thursday we had a scheduled appointment with the Cerebral Palsy Clinic at the hospital. This was in place pre-chaos so it worked out to get some of Malachi’s bloodwork done while we were there anyway. The CP Clinic is a group appointment where each of the boys gets to see the Neurologist, Orthopedic Surgeon, and Physical Therapy for an assessment and measurements on muscle tone. They called the day before and told me that they needed baseline x-rays for Levi’s hips, feet, and spine so we were told to get there a litter earlier.

Levi’s PTSD has been ramped up a bit with his recent RSV fight. While Malachi and I were inpatient at the hopsital Jake had to take him to the pediatrician to figure out why he was sick. They ran all the tests, including a Covid swab, step test, and a blood draw. So when I mentioned the doctor again he immediately went into high alert, even waking up the nights before the appointment in tears yelling “NO DOCTOR MOMMY”.

He cried the entire way to the hospital and I explained that they were going to take pictures of his feet, hips, and back and that it wouldn’t hurt. X-rays are a new concept for him and oh boy what a process that was. Add into the mix that the hospital wouldn’t let Malachi into the x-ray room and told me to stay with Malachi and they would take Levi alone for his X-rays. Ummm….that’s a hard no. He was already losing his mind at this point so much that he was vomiting in the waiting room. The idea that I would make him go in without me by his side was just not settling well with me. And when he heard their suggestion for me to stay with Malachi, Levi grew even worse. I turned on music for Malachi and decided that he would just have to stay in the waiting room alone for a few minutes and prayed that he wouldn’t have any seizures. Last minute they were able to snag a nurse from another department to sit next to Malachi. I understand not wanting to expose kids to needless radiation, but we are talking about Malachi who has had hundreds of x-rays, not to mention CT and MRI. I don’t often ask for exceptions but this one warranted it, specifically with how out of control Malachi’s seizures have been.

Here is a video of the madness. I was sitting in the waiting room catching vomit from a hysterical Levi and listening to Malachi laugh at his brother. I took a quick video to share with Jake later as I knew words wouldn’t adequately describe the scene we were creating in front of all the other patients:

When we finally made it up to the exam room to meet with doctors Levi was still a sobbing mess and Malachi went into another large seizure. The neurologist witnessed this one firsthand and made the decision to increase one of the new meds we put him on. He wanted me to use rescue meds on Malachi (a medicine we keep on hand for seizures lasting longer than 5 minutes) but when that happens I have to call 911 and take him legit into the hospital ambulance style because it slows down his breathing and he needs oxygen support. Thankfully by the time we finished that discussion Malachi started to pop out of his seizure.

Funny side note- the orthopedic doctor was new to us and asked “Are they twins?” I must have looked at her like she had two heads because she immediately retracted the question. I have realized over the years that doctors quickly try to find categories to make things make sense in their heads when it comes to abnormalities. We often get asked if they are adopted since we have two with such varying medical issues. On the night that Malachi was born the hopsital staff asked me dozens of times what I had been doing that weekend, trying to find something that would line up with a placental abruption. I told them that we took the youth group caving and somehow it got in my file that “Mother fell while caving.” All of the oddities surrounding his birth were attributing to me “falling” which was something that never happened. But in their minds it was an explanation that made sense so it was declared as fact. This was such a sore spot for me, as it removed the urge from them to figure out what ACTUALLY prompted the abruption. Thankfully my OBGYN knew better and prepped Levi’s pregnancy accordingly; I abrupted spontaneously again with him as well.

After our appointment we went down to the blood lab to get his liver enzymes checked. While we were in the ICU Malachi infiltrated at least 4 IVs (blew the vein they were in). Finding a vein to even poke for blood is very difficult right now so it took a few sticks before we got enough for his sample. Malachi is so incredibly tough though and rejoiced alongside of us with a sweet smile when they finally started getting some flow.

Late Thursday evening Malachi and I started showing signs of sore throats, which was super disappointing since we had stayed away so long to prevent catching what Jake and Levi had. Thankfully it hasn’t progressed into a full blown cold, just a menacing sore throat for now and it seems to get better each day. On that note, Jake has continued to struggle with the after effects of his cold- it has officially been over three weeks since his symptoms began. He went to the doctor on Saturday for an ear infection and also a Z pack of antibiotics. And I know you will ask, but both Jake and Levi were tested for Covid and it was negative (Levi at the start of his sickness and Jake on Saturday).

Malachi and I are scheduled to be at Vanderbilt late this week but will be letting our symptoms and health dictate that trip.

Needless to say, it wasn’t a week full of beautiful moments and rays of sunshine. It was a pretty difficult one, each day focusing on just making it to bedtime. When Malachi is only sleeping 4 hours a night it means the days often blur together and having multiple days of that can mess with my psyche.

This week the Spirit continued to put the same verse on my heart:

”I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all things through Christ who gives me strength.” Philippians 4:11-13

I know I talk a lot about contentment on the blog and how it is something we often have to choose. This was definitely a choose contentment week as things weren’t as easily accepted as “good”. But these words resonated with me this week as I reflected on this past month of ups and downs. In the last month I have been in need. I have been hungry. I have been living in want. And as our minds naturally do in those dark days I was drawn to the “living in plenty” moments and the “well fed” moments for my comparison.

But contentment isn’t meant to be an easy and natural thing, as it is not the same thing as joy. Contentment is choosing to be satisfied with things just as they are. And this cannot be accomplished apart from God.

Acceptance of the hard things in life cannot be done apart from God. We often see acceptance as surrender…but isn’t that what faith does? Surrenders our ideals to God’s plan.

But like Paul says in this verse, we have learned the secret…

”I can do all things through Christ who gives me strength.”

Before children I always used to apply this verse to my moments of triumph and victory in something. It was my way of giving glory back to God and acknowledging Him in my success.

But now I apply this verse in my moments of human failure. It my “end of the rope” moments when I have nothing left to give. It has become a heartfelt prayer to Him, crying out when I have nothing more of my own to offer a situation.

In life there are lots of things that you can say you will never be able to do. I could never _________.

But there are things in our life that we were never meant to do alone. There are things that you simply cannot do apart from the Lord.

When God comes alongside of you in your weakness and shares His strength you will most definitely find an inexplicable contentment knowing that He is right by your side.

I am rambling…and totally recognize that haha. I hope that you take time this week to read through Philippians 4 and see what God wants to highlight in your life. It is one of my favorite chapters and I have memorized most of it to help me through the hard moments in life. If you have never experienced God speaking to your heart through scripture I really encourage you to take time to read this chapter and watch what He can do!

Please be in prayer for our family still. We are still in shambles a bit and need a solid week of health and strength to get our footing back. And please continue to pray for Malachi’s liver health so we can get him back on some seizure meds that will work.

Much love,

Leah

We are home! It has been a journey to get here but we are feeling so blessed to be back together.

I left off last week’s entry with us being in a private room in the ICU. Late Sunday we were transferred to the main pediatric floor of the hospital and by Monday evening we were discharged. Malachi’s liver enzyme levels are continuing to drop by he is still technically in liver failure. When he was discharged we were at 930 and on Friday he had some bloodwork done and his level was at 237. Our goal is to get back under 54 but we are slowly making progress towards that goal.

Malachi had a morning visit from Spider-Man and thought that was such a special thing He knows it is really respiratory therapist Ryan, but to him he is a superhero anyway so the mask fits!

Until his liver completely heals and recuperates we are stuck on a seizure medication regiment that isn’t ideal. It is frustratingly difficult to find medications that don’t route through the liver. Malachi has intractable epilepsy (uncontrolled) and has multiple seizure types (he is up to 4). Each medication he takes helps control a different type of seizure that he has. We had to stop the medication that helps his tonic seizures (physical jerking ones) so we are seeing a pretty big increase in those right now and there isn’t anything we can do about it. We met with the epileptologist and decided it was best to choose liver health over seizure control for now.

Malachi is still very weak and pale as he is still healing from a pretty rough two weeks. It was a hidden blessing in disguise for us to have a quiet place for just he and I to go upon discharge. He had a few bad seizure days and being able to completely focus on him those days was vital. They removed the staples from his surgery incision right before discharge and it is healing up nicely.

Prior to all these emergencies Malachi and I had planned a trip to Nashville for just the two of us to meet with some of his surgeons. I had talked up the trip BIG time, promising him a movie at the theater, a trip to the zoo, and a night at the Rainforest Cafe. He was sincerely looking forward to the trip and activities and was upset that we didn’t do it. We will travel there next week for those appointments but it will be a condensed trip as Jake is now having to take time off work for those days.

On Thursday he and I went to a matinee at the local theater to watch the movie I had promised him. He was completely captivated and LOVED it. He can’t see well enough to follow a movie so I narrate it all to him and he was on pins and needles. We talked about it after and I asked him if he wanted to see it again with his dad and he signed YES YES YES.

On Friday he had some bloodwork done after his appointments at the hospital and I thought it would be a nice treat to stop by the zoo to visit his jaguar friend. Most times that we go the jaguar comes up to the glass so we have created a narrative that he and the jaguar are best friends and he gets excited to see Malachi. But unfortunately the last time we went the jaguar was sleeping, and Malachi cried and cried and cried. He was inconsolable. So I prepped his little 8 year old heart for the disappointment should the jaguar be napping again but praise the Lord he was wide awake and came to the glass by Malachi. He was giggling and so joyful to see his jaguar friend again.

After two weeks of abnormal and painful things it was so refreshing to give him a glimpse at fun and normal. He even got some pink cotton candy!

Staying away from Levi and Jake was so so hard for all of us. We reunited this weekend and it was as special as we dreamed it would be. I have hugged Levi at least 100 times.

Levi is completely back to normal and seems to have grown taller. Jake is still dealing with the after effects of his cold but relatively back to normal.

Our world is calm yet again and being able to finally release this breath I have been holding through all of this has been wonderful. There is an adrenaline that takes over during hospital emergencies and the “crash” from it doesn’t usually hit until a week or so after we come home.

So let’s talk about hospital life. Before having medical kids I had a picture of what life in the hospital looked like, and the real picture definitely doesn’t match that picture. I thought it may be helpful for me to explain it a bit to you all so you can better understand your friends who are dealing with hospital stays.

First of all, life in the hospital is bizarre. There isn’t a better word for it. Time changes in an inexplicable way.

Nursing shifts change at 6:30 in the morning and evening. And doctor rounds are usually 9-11 in the morning and evening. So you can always rely on those. But then there are the other visits from specialists. After things grew complicated we ended up with many of Malachi’s specialists on board. So in addition to the regular rounding and shift changes, Malachi would be visited and examined by the neurosurgeon, the epileptologist, the neurologist, the GI doctor, nutritionist, and surgery. But what adds to the chaos is that many of them send their nurse practitioner and/or resident doctor in as well before their visit to scope things out and report a summary to them before they visit. So all day long there is a steady stream of doctors floating in and out.

Add into that the nurses doing vitals checks (every hour in the ICU, every 4 hours on the floor), administering medications which was alllll the time for Malachi, housekeeping, and a few other random things.

There is no differentiation between night and day in the hospital bubble so all the days start to blur together.

The specialists this round started their visits around 6am. And each time they each want to physically examine Malachi whether he is asleep or not which you can imagine is not ideal.

There is something just so uncomfortable about waking up from a dead sleep surrounded by a group of medical professionals. So once that first rounding person wakes me up I stay up for the rest of the day. I was actually thankful for the masks this go around as it made me less self conscious about my morning breath! I set some goals for my sanity this time and tried to get a shower at least every other day, especially when Malachi became generous with his bodily fluids. But these required me to leave Malachi out of sight for a few minutes so they were as fast as humanly possible.

On that note, it is for the reasons listed above that we prefer to not have visitors during our hospital stays. It requires me leaving the bedside and taking my attention away from Malachi to go meet someone, even to bring them to the room pre-Covid. It also runs the risks of us missing a specialist that is stopping by. It is also the reason that phone calls are usually very short and concise as they are often interrupted by someone new entering the room.

A hospital room typically has a bed for the patient and a chair. But as far as cleanliness you know that blood, fecal matters, and other bodily fluids have covered the floor at some point and likely not been thoroughly cleaned up. I NEVER remove my shoes in a hospital stay unless I am crawling into bed with Malachi. And I also glove up and thoroughly clean any room we are assigned to as much as possible before setting anything down. Rooms are obviously designed for the patient so places for personal belongings are rare. I have a hospital backpack that I try to cram all of our supplies into but do everything in my power to not bring more than needed in to the room. In the first ICU room we were in there wasn’t even enough space for Malachi’s wheelchair so I had to take it down to the car. You learn to survive on no more than 3 outfits and a toothbrush.

There is a room with a refrigerator for all of the patients families on that floor and PICU to use but you can imagine how nasty that fridge can get. When you get discharged , cleaning out the fridge falls pretty low on the priorities list so the moldy food in there is the real deal. There is also the concept that many of the families using these spaces have children suffering from very contagious diseases and touching the same surfaces just doesn’t seem smart. So I avoid those as much as possible and wash my hands at least 50 times a day.

To pass the time there is a 0% chance that I will have the mental capacity to read a book or do a crossword puzzle- things people assume I knock out while inpatient. My attention is always 100% focused to watching Malachi and being very present for him. We watched at least 100 movies (maybe a slight exaggeration but pretty darn close) this time around, all of Malachi’s favorites over and over again at his bidding. Whatever we could do to take his mind off of things.

It feels like a weird psychological experiment sometimes, like how long can you go without breaking down. I did decent this time around but had two days of sobbing (oxy overdose day and liver failure day) but those felt warranted. I started to feel my sanity slip near the end of our stay when the room they moved us to had a shower that wouldn’t drain and hadn’t been cleaned from the previous person’s stay…I could totally paint you a word picture right now but I will be kind and not. As I was discussing the issue with the nurse I could tell that it wasn’t a priority to them and the idea of not being able to even get clean set my into a bit of a panic. At that moment I had three of Malachi’s bodily fluids on my and I was desperate to change but didn’t want to waste an outfit on a dirty body.

At that very moment when I felt like I was about to start crying a roach crawled across Malachi’s bed and made a beeline for the nurse. She shrieked and I knew it was the piece of evidence we needed to justify a room change. We were in a fresh new room within the hour and I had a glorious 2 minute shower and some clean clothes and the weight on my chest vanished.

It is all about survival mode, physically for Malachi and mentally for me. I am a poster child control freak and nothing strips away control more than the hospital.

I spend a lot of time listening to praise and worship music and letting the words sink deep into my soul. I desire so desperately to sing aloud but it isn’t respectful to the other patients healing around us. When Malachi was in the ICU the doorknob turning would set him into a seizure; knowing that I could possibly mess with another patient that way with singing is enough to silence me.

Monday evening as we drove towards the guest house I let the bottled up praises fly free and thought I might lose my voice. This morning at church we sang one song that the Spirit had put on my heart the entire hospital stay called “The Goodness of God”. I felt the emotions coming on but stifled them decently through verse one. Then verse 2 hit:

“I love your voice, you have led me through the fire. In the darkest night you are close like no other. I’ve known you as a Father and I’ve known you as a friend, and I have lived in the goodness of God.”

Ugh. Cue the ugly cry.

Then there is the chorus and bridge:

”And all my life you have been faithful. And all my life you have been so, so good. With every breath that I am able, oh I will sing of the goodness of God.”

”Cause your goodness is running after, it’s running after me. With my life laid down I’m surrendered now, I give you everything. Cause your goodness is running after, it’s running after me.”

Here is a link to the song if you need a worship session today: https://youtu.be/n0FBb6hnwTo

I reflected on the idea of God leading us through the fire yet again these last few weeks. And I realized that many people have that concept all wrong. They hear that and wonder why a God so good would lead us into a fire.

But the reality is that we ALL find ourselves in the fires of life, whether we know God or not. Without the Lord we desperately search on our own for the way out. But when you know God and you enter that fire you learn to look for Him, and cling to Him as He leads you safely out. He literally leads us through the fire.

And oh, His faithfulness is so reliable and comforting.

As Jake and I were driving today we talked about how our children’s challenges have dramatically impacted our faith. We literally have nothing else to cling to in our chaos but God. Walking through life with these precious children of mine has made my faith so…well…easy. I no longer doubt the goodness of God as I see it play out time and time again in the worst moments of my life. What a gift we have been given, and oh how we treasure it.

But getting to this point has required a heart of surrender. We no longer even try to tackle it without him. When I even feel the flames of life getting close I start calling out to Him so I have His hand to grasp when the flames engulf us.

What a beautiful and difficult journey these last 8 years have been.

The hardest part of our story is that while there is a definitive beginning there is no middle and no end. Each trial and challenge is simply a chapter. So our testimony is a fluid one, ever changing and evolving.

But this also means that I am frequently bracing for impact for the next hard thing to hit. And that is no way to live life.

So we cherish the in-between. These weeks, months, years of our normal. We make the most of them knowing that one day there is another chapter that has already been authored by God that lies up ahead.

On that note, it wasn’t until our appointments this week that I realized how scary Malachi’s condition was for medical professionals. They masked their fear oddly well from me, but confided in me at our appointments that they were very fearful that Malachi was going to pass away. One even told me that he woke up several times throughout the weekend feeling pressed to pray over Malachi. Another told me they had only seen liver enzymes that high in a child one other time. Another explained that he had seen several epileptic children pass away from liver failure just like Malachi’s.

I am so thankful that God’s goodness keeps running after our family.

Lamentations 3:22-23 “The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness.”

Much love,

Leah

It is overwhelming to even know where to begin this post. Last week we left off with Malachi simply recovering from a surprise emergency surgery and we were hoping to be home by mid week. Unfortunately things got more complicated and Malachi was transferred to the ICU and we are working at getting him stable enough to head back out to the regular hospital floor.

So what exactly happened? We had a few events take place that initially seemed separate, but I am not convinced they weren’t directly correlated now that we have more of a whole picture. I will summarize as best as possible with just the main points.

Monday was a great day for Malachi. We were continuing to work towards discharge and were told we may even be able to leave Tuesday if he took his feeds well. Monday was a great night filled with Malachi laughter and silliness. You couldn’t tell he had even had surgery except for the periodic winces when his incision was touched. (Side note- we removed the gauze and the “4 inch incision” is definitely 9 inches).

Tuesday morning rolled around and Malachi was extremely tired. I let him sleep a bit but in the back of my head I was eager to wake him up and get his feeds started for the day, hoping for a hospital discharge that evening. After two hours I asked if they thought I should wake him up and they said “I wouldn’t worry mom. He just had surgery and I am sure he needs the extra sleep.”

After three hours the housekeeping staff came in, opening trash bags and clanging around and I was secretly happy, thinking that the noise would wake him up and we could continue working on getting out of there. But Malachi didn’t even move with all the racket.

I spent the next hour anxiously watching his monitors for any changes and I noticed his pulse started to trend lower and lower. I started to get this feeling in my gut that something was wrong so I tried to wake him up. Malachi was non-responsive and had his eyes rolled in the back of his head. The doctors and nurses initially weren’t concerned as his numbers were all still safe ranges and just kept assuming that he was simply tired from recovery. They called in the surgery resident and I explained my fear to him and they decided that maybe his shunt was malfunctioning and passed the buck over to neurology. We went down for a CT scan and while he woke up for a brief few minutes to look around on the field trip down there, by the time we got back up to his room he was out again.

At this point I was getting sick to my stomach. We were just waiting around to see if his shunt had malfunctioned but we had no back up testing being done should it not be the shunt. Results came back that the shunt was fine. And everyone breathed a sigh of relief…except me.

His night nurse from the previous night came back (thank the Lord) and when she walked in and saw Malachi she was extremely concerned. The starch contrast between the two days was very scary, enough so that she called a Rapid Response Code. This code is used very sparingly and when it is called 15 people storm the room ready to act quickly. Respiratory therapists, PICU doctors, etc. They came running in and immediately started to evaluate Malachi. They tried sternum rubs on him (an extremely painful thing that should produce a reaction) and Malachi didn’t move. They poked him for IVs and blood draws and Malachi did not move or wake up. He was completely unresponsive.

Very long story but the short version- the theory is that Malachi was not metabolizing one of his high level pain meds (oxycodone) and it caused him to have an overdose in his system. We stopped all pain meds cold turkey and by the next day he was starting to wake up a bit. He had stayed in a sleep/non-responsive state for a full 24 hours. Obviously this stopped all progress towards going home so we started back at square one on feeds.

He had a decent day Wednesday but by the afternoon he was in a lot of pain and started acting more and more sick. In the middle of the night he started screaming uncontrollably and his heart rate stayed up near 190 for several hours, even after we administered pain meds. Thursday morning they drew up labs and his numbers for everything were completely out of whack.

The team went into emergency mode, hoping that it was a bad blood reading but the re-draw said the same thing. Malachi’s liver enzymes were at over 5,000 (safe range is 5-54) and several other levels were also dangerously off due to the liver not functioning. Malachi had gone into acute liver failure. If left untreated other organs also go into failure as the liver interacts so much with other things.

We were transferred to the ICU and things moved at incredible speed to try to get him stable and safe. The liver filters blood and Malachi’s coagulation was very much affected. So we quickly had to do fresh frozen plasma to get that under control. His blood sugars were off, so we added sugar into his IV fluids. His bilirubin and ammonia levels were very far from normal so we started medications and injections to get those under control. Since infection can be a cause of liver failure we started antibiotics to get ahead of that while the doctors tried to figure out what was going on.

There were lots of theories: 1) the liver was knicked and injured during surgery: but the surgeon was confident that was not the case 2) there was a blockage in the vessels to the liver: but ultrasound ruled that out 3) the liver was enlarged: but ultrasound showed it to be the normal size 4) infection: which stayed on the table for a few days but has since been ruled out 5) medication issue: which seems to be the lasting theory.

One of the livers jobs is to detoxify chemicals and metabolize drugs. Malachi takes several routine medications a day that filter through his liver, specifically a few of his seizure medications. The thought is that when we added in Tylenol and some of the other pain meds that are also sent through the liver that it overwhelmed it and went into failure.

At this point we had intervened on all that we could and we simply had to watch and hope it was enough to get the liver to start functioning again. We did lots of blood draws to monitor and within 24 hours his liver enzymes had gone from 5,000 down to 2,500. As of Saturday morning they are down to 1,500 and I am still waiting on results from today.

As if things were chaotic enough, since 3 out of his 4 seizure meds are filtered through the liver so we had to stop the 3 cold turkey. We added one seizure med that does not route through the liver, but when adding and taking away those meds there usually is a titration process, where you add and remove very slowly. Malachi started having some pretty big breakthrough seizures, triggered by any and all noise. We were in a shared room in the ICU initially, separated by a curtain that is porous a the top. So if they turn the light on it also turns it on in our half as well. The first time that happened it set Malachi into a pretty nasty seizure and the staff worked to keep that other half empty for his sake.

We were able to transfer to a private room in the ICU on Friday and it has been so much better for Malachi. Selfishly I am much happier here. They were requiring masks 24/7 in the other room and there was only a chair to sit in, no surface to recline or lay back on. I tried getting in bed with Malachi but the movement caused more seizures so I stayed up the first night with him.

Step 1 is getting his liver functioning again, then step 2 will be transferring out of the ICU and going to the main floor to pick up where the surgery recovery left off- getting him up to full feeds and managing pain.

Step 3 is going home. But even that has grown complicated. On Monday Levi started complaining to Jake that his ears hurt. Jake took him in Tuesday and found he has a double ear infection and RSV. Yes- you read that right. RSV is so incredibly dangerous for a child with a complex airway, and if you remember we were told by surgeons in Cincinnati to expect an ICU stay if Levi gets a common cold. Obviously this set us into a panic in an already stressful time but God has been so so so good and Levi’s oxygen levels have been safe. Jake has also contracted it and I will not be able to take Malachi home until it clears our home. We have a family at church that has offered their guest home to me for as long as it is needed, but upon discharge it will be so disappointing to not be able to be together as a family.

And interesting side note- our dogs were acting off during all this nonsense so Jake ended up taking them to the vet. Tuck has pneumonia and had to be admitted to the dog hospital for three days. Bizarre. So Jake dealt with sick dogs, sick boys, and now sick Jake since I have been here with Malachi. The dog sickness is in no way related to the RSV. Just annoying irony.

So now let’s have some honest talk here. As you can imagine this has been a very hard week on Malachi and therefore hard on my momma heart.

There have been two distinct times this week that I thought I was about to lose Malachi. The night before our unresponsive oxy overdose I was praying about this whole situation with God and He led me to Psalm 23:

“The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.

 Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.”

As I read these words that night I reflected over our situation- that the surgery was as textbook as it could be and “simple” considering it was an emergency. At that point Malachi was recovering well and we were heading home the next afternoon. I want you to read that chapter again with those things in mind and see what parts your mind cues in on.

I went to bed that night with such a fullness in my heart and feeling so blessed.

But when the next day came and Malachi started to decline with the oxy overdose I started replaying this chunk of scripture and my heart was clinging to very different parts. Read it again with a very sick child in mind.

Hebrews 4:12 tells us “For the word of God is alive and active…” If you have never understood that verse, maybe this glimpse will help you realize that the words of God are so much more than a historical text. You can read the same words 20 times and God’s Spirit can continue to teach you new things through it.

So as I read it the first night my heart was overflowing with joy on how God had led us to quiet waters and green pastures. And when I read it the next day my heart was stuck on how we had now been led to the valley of the shadow of death. I was so busy noticing the quiet waters and green pastures that I didn’t notice we were being led into a valley of shadows. The darkness of the verse settled deep in my soul, and as I stared at my lifeless son I started to process whether this was Malachi’s time to “dwell in the house of the Lord forever”.

The first time that thought hit I got physically nauseous. We have always been aware that we will likely be by his side when Malachi is called heavenward. But I didn’t want it to be now. I didn’t want it to happen when Jake couldn’t be by his side and Levi couldn’t have given one more hug and kiss…one more “I love you Chi Chi.” I found myself pleading with God. And then I felt myself realizing the selfish nature of my prayer and changing it to God’s complete and perfect will being done.

Malachi means “My Messenger” and oh what a messenger of the Lord he has been since day one. We have been blessed to be able to share his testimony with anyone who will listen and how beautiful it is to think that God can use a child that has never spoken a coherent word to teach the world about Him. He is such a heavenly minded boy. He has no fear of death and no fear of evil and that is such a gift from the Lord. I am confident his pure and unclouded view and excitement of heaven is a pleasing aroma to God.

Right in the middle of my God conversation that afternoon I was holding Malachi’s hand and he suddenly woke up. He had been unresponsive all day and he looked right at me. I thought that this was a gift from God for me to be able to say my goodbyes to Him, and y’all, that moment wrecked me. I didn’t want my final words with him to be riddled with fear so we talked about the goodness of God and the excitement that Malachi could sing with the angels and be in the presence of God. He was listening intently then drifted off to non-responsive again after about two minutes.

I have spent this week in the valley of the shadow of death with my son. Yes, it is an evil and dark place….it is a tangible darkness that you can taste as it envelopes you. This week has been clouded with suffering, and watching it happen to someone that you love seems to intensify the pain more than if it were just happening to me. But even in the thickest parts the rod and the staff of God are extended to me. The comfort that comes from tightening your grasp on the outstretched hand of God can overpower any darkness. We aren’t created to withstand the shadows of death alone and please know that you will fail every single time without God’s help.

Malachi and I have spent our time in this valley of death and darkness singing praises to God. We have spent each night telling Bible stories and talking about times in his life that Malachi has been a part of a big God story. As I laid there with him in the ICU I couldn’t help but remember that it was in that very same building that Malachi was born without a heartbeat and spent 15 long minutes in the arms of the angels as they tried to resuscitate him. There is such a clear reason that Malachi is on this earth, and while I may not always see the purpose in the suffering I know that God sees such value in Malachi’s life. He has given him such a great job description for His Kingdom, and oh how beautiful it is to see Malachi continue to tell his God story with a smile on his face.

I *think* I see a clearing and maybe some green pastures up ahead this week, but there is something so faith building about dwelling close to God in this valley. He has been restoring my soul and anointing me with oil. I have watched Him turn my mourning into dancing even though we are still surrounded by darkness. And that is something only God can do.

Please continue to pray for progress and health in our family. Pray that there are no more sudden setbacks and that Malachi’s liver begins to function again. Please also pray for protection from any sickness and that Levi will continue to remain stable and strong through his RSV.

Even after discharge this will be a very complicated process for our family as we try to get his seizure medications figured out and get him back to baseline. He is very weak, understandably. I am admittedly nervous as his caregiver because we have lost all signs of a baseline. When I don’t have a “normal” for comparison or monitors to reassure me it makes caring for him very nerve wrecking.

Please also continue to pray for my endurance. I have reached my emotional threshold, which is not an easy thing to do. As hard as hospital life is, leaving here will be even harder as I am 100% responsible for his care. Hospitals are the worst possible place to try to “rest up” so I am already extra sleep deprived, getting 2-3 hours per night.

Much love,

Leah