This is a pretty special week for our family as Malachi reaches double digits! He turns 10 years old on Saturday and he gets the giggles each time we talk about it.

Malachi is starting to look like a preteen and has hit such a growth spurt lately. We meet with the GI doc in a few weeks and I am so curious how he will feel about the very apparent changes we are seeing in both boys.

There are a lot of things Jake and I haven’t mastered as parents and birthdays are one of them. We have always tried to make the day special for the boys, letting them each choose what we do that day, but we have never hosted a party for either of them. There are lots of reasons for this but the biggest factor has always been the germs that swirl around this time of year. The amount of birthdays we have had to spend in the hospital has also definitely made parties hard to focus on.

But with this being a biggie we decided that this was the year that we would try to make one happen! Malachi has been planning out the entire event using his yes/no sign language and it is absolutely a Malachi style party. I can’t wait to share photos with you on the next post!

As I reflect on the last decade with this beautiful boy I can’t help but feel such pride. Malachi is truly amazing. He has endured so much in his life, and does so with a mischievous smile on his face. We are so incredibly blessed to get to witness the world through his eyes and do life with him. Watching God’s story unfold in his life has changed me in so many profound ways. I am going to be hit with all the feels this weekend as we celebrate so I will save those ramblings for the next blog.

And little Levi is changing every day. He looks older, acts older, and his vocabulary and sentence structure has changed since he started school. His imagination has ignited even more and just sitting back and watching him play is such a gift.

He has been dealing with some ear infections lately which has triggered his medical PTSD. This anxiety not only affects the visit to the doctor but also his behavior at home after. When he can’t control his medical issues he tries to control everything else around him. We are having a lot of nighttime issues with separation anxiety and he is waking up at least a dozen times each night to make sure I am in the room. Finding that balance of supporting him within his anxiety and not enabling it has been hard to navigate.

The boys have been on all sorts of adventures since the last post! I am going to rely on photos to help summarize some of the fun they’ve been having.

Every November through January Jake and I make a conscious effort to slow life down a bit and reset. When February comes we start what we call “6 weeks of chaos”. It is very much self-induced chaos so we are very cautious about complaining, but all of our ministries merge for a 6 week span each year.

Starting next week here is the Carroll schedule:

Sunday: church in the morning, teen Bible study at our house every other week. We cook for the teens, feeding about 35-40 of them, which usually takes up most of the afternoon and evening. This also means we take our house apart, moving furniture and setting up chairs for everyone. And the cleanup after is always immense, but I find myself able to do these chores with a smile on my face. Doing work for God makes even the dishes fun.

Monday: Jake runs soccer practice for the high school team after school until 5:00. Then our adult and teen indoor soccer league plays games at the church from 6-9. We created this league ten years ago as a way to raise money for the teens to go to youth camp and usually have 60-80 players come out. I referee all the games, which is sometimes a nice break from caregiving.

Tuesday: Jake runs soccer practice for the high school team after school until 5:00. Then Leah runs practices for the children’s indoor soccer league from 5:30-7:30. This is the second year we have offered this ministry and we have about 75 kids registered this year! I do a devotional with the kids in the middle of each practice and game and genuinely love the discipleship it offers. I have about 15 people who help with this league and I genuinely couldn’t do it without them.

Wednesday: teach church youth group from 6:30-8 then a small group Bible study at our home from 8:15-9:30.

Thursday: hang onto your hats…this one is the doozy. Jake runs soccer practice for the high school team after school until 5:00. Then Leah runs practices for the children’s indoor soccer league from 5:30-7:30. Then the adult league runs two games from 7:30-9:00.

Friday: Bible study at our house from 8-9:30

Saturday: Children’s indoor league plays their games from 9:30-12:45. We bring in Dunkin Donuts and concessions for the youth to sell to raise money for their camp and clean up after, so our day starts a little sooner than that and ends a little later! Then men’s Bible study at our house from 6:30-8:30.

After 6 weeks we drop all of the indoor soccer from the list above and I team up with Jake to help with the outdoor high school team. We have been coaching together since before Malachi was born and it is such a great way for us to form friendships with a demographic of kids that will never step foot in a church. Many of the teens we meet through soccer end up coming over for Bible studies!

The boys love to tag along on these adventures. Malachi loves listening to soccer games and Levi loves finding new friends to run around with.

So why bore you with the details of our busy season? I share all this as a testimony for the provisions of God. His provisions in our energy, our health, our contentedness in marriage and ministry together. God gives Jake and I a spirit of likemindedness, each of us being able to stay focused on the goal of the chaos. We genuinely feel like God is calling us to run each of these Bible studies and ministries. And we are simply following in obedience, trusting God to sustain our health and our family.

Whenever we go through weeks that require more of us than we are able to give I have to stay focused on God and His Word. These last few weeks I have been feeling the pressing need to abide in Him in preparation, and in that preparation I have been drawn so much to the Israelites in Exodus and specifically their shortfalls. I think I am drawn to them because they reflect so much of my heart when I am being challenged and stretched by God. It is the ugly, fleshy side of me.

I start to complain. I start to get angry with the others around me. Just like my Levi grasping for control when he feels unsure, I too do the same with God.

But this also a season of manna for our family. It is an opportunity for us to evaluate how much we truly trust Him.

In Exodus the Israelites start grumbling about the lack of food in the wilderness. God hears them and responds.

“And the Lord spoke to Moses, saying, ‘I have heard the grumblings of the sons of Israel; speak to them, saying, At twilight you shall eat meat, and in the morning you shall be filled with bread; and you shall know that I am the Lord your God.’” Exodus 16:11-12

That last sentence is so significant to me. God’s provision wasn’t the result of their complaining. It was a demonstration of His power and His love for His people.

Exodus 16:13-21 “So it came about at evening that the quails came up and covered the camp, and in the morning there was a layer of dew around the camp. When the layer of dew evaporated, behold, on the surface of the wilderness there was a fine flake-like thing, fine as the frost on the ground. When the sons of Israel saw it, they said to one another, “What is it?” For they did not know what it was. And Moses said to them, “It is the bread which the Lord has given you to eat. This is what the Lord has commanded: ‘Everyone gather as much as he will eat; you shall take an omer apiece according to the number of people each of you has in his tent.’” The sons of Israel did so, and some gathered much and some little. When they measured it by the omer, the one who had gathered much did not have too much, and the one who had gathered little did not have too little; everyone gathered as much as he would eat. Moses said to them, “No one is to leave any of it until morning.” But they did not listen to Moses, and some left part of it until morning, and it bred worms and stank; and Moses was angry with them. They gathered it morning by morning, everyone as much as he would eat; but when the sun became hot, it would melt.”

There are so many profound lessons in this scripture. But I want to focus on my favorite one…

God calls them to take just enough to sustain them for THAT day. God wants us to trust that each morning there will be bread to fill our bellies and meat each evening to provide our energy for the tasks He calls us to.

And in their arrogance some attempted to take more, doubting that God’s promises would remain steadfast. How many times do we offend God in this way? We reserve some of our energy, our resources, our time instead of trusting God 100% to provide exactly what we need to carry us through.

Do we truly trust God?

Last year during our “6 weeks of chaos” God kept our family healthy and functioning at 100%. That alone was such a hug from him, knowing that we are exposing our family to the germs of hundreds of new people each week during cold and flu season. We are praying that this year God’s provisions continue…

But what if this year is different and we contract something that puts Malachi back in the ICU?

We choose to believe that even that holds a purpose. And maybe it is an opportunity for someone else to step into our ministry roles and can become a catalyst for God to work through.

Part of faith is believing that even the valley moments in our lives are ordained by Him. The devil would love nothing more than for our fear of the valley to hinder us from allowing God to uproot and guide us to new things.

In this challenging season for our family we are given the opportunity for a faith marathon. There will be lots of sore muscles, lots of temptation to compare months with each other, and lots of sacrificing. But in return we are given the chance to build faith endurance from trusting God. We are able to witness the manna each morning and the quail each night, knowing that those gifts from our Heavenly Father are just enough to carry us through another 24 hours.

I am officially starting to drift, so I think it is time to wrap up. Sometimes I feel like I am writing disjointed jargon on here, but I trust that God can pretty it up and speak through my imperfections!

Please be in prayer for Malachi, that his birthday party continues as planned. I have this (very rational) fear that something may come up and he won’t be in a good enough health to enjoy his party. Seeing him disappointed is one of my least favorite things in life- he feels with all the feels. And please pray that God continues to prepare our family for the thick we are about to enter.

Much love,

Leah

This week I have been reminded time and time again about the faithfulness of God. Oftentimes these reminders happen in the dramatic seasons of our life. But I am starting to recognize that the reminders of His faithfulness in the slow and mundane parts of our life hit a different way.

Jake had a rare opportunity to go out of town this week with a friend, which is always a needed break and blessing. This carried a measure of guilt for him but we both recognize the need for small breaks. We don’t get to take many family trips together for several reasons, one of which being the time and finances we would use for a family trip is usually spent on our annual summer surgery trips for the boys each year. Levi has to spend a week in Cincinnati for his surgeries each summerand Malachi spends time at Vanderbilt. We add in “extras” to these medical trips to make them more fun and a little less medically focused for the boys and count them as a vacation. We also take the youth to camp each summer, blocking out another week and money towards a rental house for the boys and I. Vacations for fun tend to fall down on the priorities list and then we usually talk ourselves out of them due to the complex travel arrangements that we have to make.

So when Jake’s friend invited him on a trip I heavily encouraged him to take the opportunity! And with much hesitation he agreed. The boys and I cleared the calendar of all extras outside of our regular therapies and appointments and focused on taking each day at a time. Sometimes I bite off more than I can chew, and with Levi’s new school arrangements I was afraid that sleep would be even more rare.

There are so many factors to parenting these boys alone. Physically: it is a big ask of my body to lift and maneuver Malachi for several days straight. This week was no exception. This morning I noticed my hands quivering with physical exhaustion. Mentally: when I am unable to have a defined “break” my medical mind starts to struggle. Dosing for medications, medication schedules, feed times, charging feeding pumps, ordering supplies, and filling prescriptions. It really is a full time job caring for one medically complex child, let alone two. Levi’s seizure medication is in short supply so we had to locate a pharmacy that could get some for us…I had half a dose left in the bottle when we finally got our hands on a refill. Self-Care: this becomes an add if and when I can sneak in a shower or a nap. We don’t like to leave Malachi unattended due to his seizures but dragging him around the house with me is a challenge. And I don’t dare take a nap with an awake Levi in the house haha! He is just too…creative.

We know all of these things, so leading into the week I formulated a plan and a schedule to try to preserve as much as possible.

Each morning we dropped Levi off at school and when we came back home I put Malachi in his comfy chair in the living room. And every single morning, like a true gift from the Lord, he fell asleep for at least an hour. The first morning I couldn’t believe it. Malachi will sometimes try to take a nap, but every single time he naps he wakes up a few minutes later with a very aggressive seizure. But this week he took a nap every morning while Levi was at school and had zero aggressive seizures. He would wake up smiling and ready for the day. Malachi is almost 10 years old, and so this precious gift of another hour of sleep had to be orchestrated by God. I cashed in on the opportunity, sleeping on the coach next to him and holding his hand in case he went into his aggressive seizures.

Around lunchtime we would pick Levi up, listen to the adventures from his day, and head back to the house where Levi would crash and nap for at least an hour. Y’all. I couldn’t believe that the blessings just kept coming. I was able to accomplish so many things this week! A week that I had described as a survival week turned into one of the most productive ones in years.

I can’t tell you how many times I smiled and thanked the Lord. Each tiny, seemingly insignificant blessing felt like another hug from God.

Now don’t let me fool you- it was a challenging week. But when challenging weeks have God moments mixed in they just don’t seem so bad. Jake came home late Saturday evening and it has been so refreshing having the team back together again. We function so much better together!

Levi is still thoroughly enjoying school. I know I mentioned already that he is a sponge, but his memory is unbelievable. 7 days into school and he could fully recite the pledge of allegiance to the flag and the the Bible. I was so shocked when he just started reciting it one afternoon!

There are several reasons that we placed him in this specific school but one of the biggest ones was to see if he is ready and capable of handling kindergarten next year. Levi has lots of complexities but in so many ways he is very typical. So our hope is that he is able to remain in the regular education setting with supports in place if they are needed. But we also recognize that there are many unknowns with Levi’s brain and the older he gets the more we see the damaged areas affecting different parts of his body. He is losing vision in his eye due to this brain damage, he has cerebral palsy in his ankles and core, and he has some fine motor limitations. We needed to find a school to partner with that was willing to go on this journey with us and not be quick to categorize or label Levi.

Ugh. I feel a rant coming on. I didn’t intend to do this, so feel free to fact check me but this is a quick education of a dark corner of special education.

I was as a special education teacher before I had Malachi and there are a lot of unethical things in many school systems. In my own experience in Georgia I have overheard directors mentioning that we need to have a child evaluated for another specific disability so we can categorize them as “Multiple Disabilities” and potentially change their services or setting to a self contained classroom which collects more more federal funding for the school system. This is not a child centered approach.

When you incentivize by linking funding to disability categories/settings it leads to over-identification and it has potential to override what the student’s actual needs are. It also encourages a more restrictive environment for the student rather than letting their needs drive the decisions. Let me do a disclaimer here and explain that not all school systems have this unethical mindset! But it does exists in the public school world and it is important that you be aware of it if you have a child with extra needs.

Each state has a funding formula for exceptional students. For example, in Tennessee the base amount of federal funding per student in a public school is $6,860. With each additional need for a particular student that number increases. This extra money is assigned for special education for the county but doesn’t have to be used specifically for him within that special education program.

This was taken from an article I found online to help you understand the potential. Here is the link to the article if you want to read it in its entirety: https://www.tennessean.com/story/news/education/2022/03/14/disability-advocates-new-tennessee-school-funding-formula-negative-impact/7035362001/

The current formula proposal allocates additional percentages of funding on top of a base funding of $6,860 per pupil for each of ten unique learning needs,including:

• 15% for students with disabilities who receive consultations or direct services that equal less than one hour a week
• 20% for students with disabilities who receive less than four hours of direct services a week, or for students with characteristics of dyslexia or for English language learners in Tier 1
• 40% for students with disabilities who receive direct services for less than nine hours a week
• 60% for English language learners in Tier 2
• 70% for English language learners in Tier 3
• 75% for students with disabilities who receive direct services for up to 14 hours a week
• 80% for students with disabilities who receive up to 23 hours a week of direct services
• 100% for students with disabilities who need an aide or paraprofessional for at least four hours a day
• 125% for students who receive direct services for 23 hours or more a week or who are placed in a self-contained classroom or environment
• 150% for students with disabilities who are placed in residential services or are hospitali or homebound

Federal law mandates that each child with exceptional needs should be placed in their “Least Restrictive Environment” with proper supports and too often that is not done, for convenience sake or to preserve funding that will need to be paid for the extra support personnel in the general education classroom.

For reference, (if the article above is correct and the proposal was accepted as is) Malachi falls in to the “self contained classroom” category, so the government would give the school system his base $6,860 (standard for every non-disabled student) + $8,575 due to his classroom environment. So in public schools a child like Malachi gets $15,435 per year towards his education. Again, this extra money is not directly used for Malachi alone but rather goes into the special education fund for the county.

Why is this important to know? When we originally started school with Malachi several years ago we asked about a paraprofessional for him, a one on one aide that could help him with all things. We were told by the previous director that Malachi was not medically complex enough to require that level of care and that they felt like the ratio in the classroom of student teacher was enough to adequately care for his needs. But in all reality, it was not. This funding is provided so kids like Malachi can get the extra services they need, including the staff to help make that happen. Please please please advocate for your child if you don’t feel like they are being supported in their educational setting.

Okay, rant over. Back to momma Leah.

We chose to place Levi in a private school environment that does not receive any funding for his exceptionalities. We wanted an unbiased, appropriately focused opinion of what he is capable of doing with the proper supports. We applied for a local grant that was able to pay his tuition for the remainder of the year, which was a surprise blessing.

This week his school sent home his ISP (Individualized Student Plan; very similar to the IEP system that public schools use). And on the front page is this sentence: “(School Name) recognizes that all individuals are ‘fearfully and wonderfully made’ by God (Psalm 139:14). With this in mind, (School Name) is committed to partnering with the home to develop the spiritual and academic growth of all students.”

And underneath that section: “This is not a legal document. It represents a good faith effort on the part of this team to develop a plan for this student, with the intent of helping him progress to the best of his ability within (School Name) environment.”

When I read this I was overcome with emotion. This is such a pure and unadulterated approach to special education. No motivation other than wanting to come alongside the child and help him succeed.

Reading this affirmed my decision to send him to this particular school. Both of my children are fearfully and wonderfully made. They are so perfectly unique. And I love watching them become exactly who God designed them to be.

Watching God carry our family this week in such a seamless way reminded over and over again about His faithfulness. It reminded me that I am seen and I am loved. And this awareness flavored my week in the most beautiful, satisfying way.

May we have eyes that look for God in the mundane moments as hard as we search for him in the fire-filled ones.

And just as a quick reminder, you will not see a post from me next week. I will be cutting back entries to every other week and I didn’t want you to worry that something was wrong.

Much love,

Leah

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