Malachi is home! The reunion was sweeter than I imaged it would be. Levi has been very tender with Malachi, examining his wounds and showing such empathy.

Quick flashback to 7 years ago when we brought Levi home from his 5 months in the ICU. Sweet, sweet brothers.

Malachi has a very rough first 48 hours home, with his heart rate staying higher than our last few days in the hospital. Jake and I have gone into medical mode, charting all meds, drains, diapers, feeds, and water. We made a clipboard sheet that charts out every hour of the day. Today’s schedule has us doing something hands on for him 18 hours of the day, including 30 medication doses, setting alarms to stay on top of pain meds all through the night. It’s a lot to keep track of on limited sleep.

We are trying everything to keep him comfortable but he is still pretty miserable. Still no smiles. And believe me, we are trying hard!

Even seeing his pups again didn’t perk him up.

Before we left the hospital the plastic surgery team took off his incision vac so we were able to come home with just two drains. He is still requiring oxygen but we aren’t surprised by that. I got to peek at his incision when they removed the dressing and it is a pretty alarmingly massive incision. But it is healing nicely.

We were also able to get a new seat back put on his wheelchair. The side by side comparison of the old seat back and the new one is laughable! We couldn’t place the order for the new wheelchair until we were discharged so I will try to tackle that next week. And then the process takes 4ish months.

Levi and I went on a very needed breakfast date Friday morning and it was such a special time with him. He was so excited that he picked out his outfit the night before and made sure to style his hair the day of.

We talked as we drove, listing all the hard parts about the last 5 weeks. And then listing all the good parts, the hidden pieces, that we could focus on. Like him getting to spend special time with his dad and getting to ride the school bus with the high school soccer team (Jake is the head coach) to the away games. We talked about how God works ALL things together for our good.

Levi has changed a lot in the last few weeks, physically and in so many other ways. I missed him losing his 2nd front tooth. He is taller. And his little brain is so much fun.

Yesterday I laid down for a nap and he decided to join me. As we were drifting off to sleep he quietly said “Hey mom. Do you know about the French and Indian War? THAT was a really rough time. Good night mom.”

I missed him so much!

Last night we had the final kindergarten soccer game (a makeup game) and it was so nice being able to see those kids again.

We don’t have a concept of a new normal yet, and I suspect we will need a few weeks to acclimate to life outside of the hospital again. Levi is on spring break next week and not having a reason to leave the house is a blessing. We will have an appointment next Friday with plastic surgery to have the drains removed, and then another one at the end of April for x-rays with the orthopedics team.

We have washed every item before it comes into the house, and the items that can’t go into the washer have been bagged and put in the deep freezer for a few days to eliminate any living things that may have come home with us. Please continue those prayers!

And Jake and I just had to laugh at this one….but I took some clothes down to our laundry room right after we got home from the hospital and there was water pouring out of our basement ceiling from a surprise plumbing issue. The timing is actually pretty laughable. All is well now thanks to some amazingly helpful friends and Roto-Rooter.

Tonight my Facebook Time Hop reminded me of a post I wrote 3 years ago after we received some hard news about Malachi’s lungs. As I read it today it again reflected my heart so I thought I would share it with you here.

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As I let my mind wander I couldn’t help but process that the rest of Malachi’s life will continue to be full of these procedures, waits, and bad news. Malachi’s body will only continue to decline without a miracle from God.

The amount of potential suffering that lies in wait for my son takes my breath away.

I found myself pouring my heart out to God and praying over Malachi’s death, and begging God that Malachi’s entrance into heaven would not be preceded by suffering. I love Malachi with all of my heart, and I treasure every minute, hour, and day I get to spend with him. But my mind wanders often to the potential ”lasts”.

I know I share this verse often, but this week its words soothe my heart.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16-18

Those initial words, ”Do not lose heart”. I have been evaluating what that process looks and feels like, and I have realized that this is a temptation often in my life, and especially on surgery days. It is allowing discouragement to take my eyes off of God and giving them the opportunity (and excuse) to focus on current reality.

When I keep reading that verse I can’t help but think about Malachi’s frail, scar covered body that continues to fail him over and over again. The medical community has created such amazing technology to preserve life, but it also allows a firsthand look at the ”wasting away” that this verse refers to. As Malachi ages and his medical conditions progress these words pop off the page at me. And it is easy to allow my focus to rest on the doom of those words and stop there. But we have to keep reading.

”Yet inwardly we are being renewed day by day.”

So what does that process look like? It means that our bodies are designed to fail us. Malachi’s body will fail, my body will fail, and your body will fail. No one is exempt from this process. The words of this verse remind me that we are daily being renewed, and sustained, by God because He has more work for us to do on earth.

God will continue to renew Malachi day by day because He has more God honoring work for Malachi to accomplish. And when I fix my eyes on the unseen I remember that even the suffering that we may encounter, or our “light and momentary troubles” are being used by God in ways we cannot see.

I don’t know what lies ahead for Malachi. But I do know that regardless of the potential suffering leading up to it, the day that Malachi runs into the arms of Jesus will be the best day of his life. And that hope that I have in Christ keeps me choosing joy in spite of the hard days.

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We are still very much in the thick of this round and can use your prayers to be able to function in a high needs environment on limited sleep. Please pray for Malachi’s pain management, that we will find a system that works for his body and that we will begin to see his personality come back to us.

Thank you for the many, many ways you all have supported our family through this hospitalization. And thank you for always celebrating the little things with us.

Sincerely,

Leah

This weekend was focused on healing, pain management, and learning how to take care of Malachi’s new body. Malachi had several episodes of breathing issues over the weekend, earning us a spot in the PICU until this afternoon. We are now back to “the floor” and in our 5th room for the month.

For those of you who have sent mail, we are getting it still even with the many changes. It just takes longer for them to find us. I wouldn’t recommend sending any more mail at this point as we are desperately hoping to go home by next weekend.

The ICU can be a scary place, but honestly it is my comfort place. The care ratio there is usually 1 nurse for 2 patients as opposed to the floor’s 1:4. I slept better there than I have all month, feeling secure that there were always eyes on my son. It isn’t that the nurses there are “better”, but the monitoring opportunity is better. His seizures increased in the ICU and he had some scary desaturations that we couldn’t get under control, even with 6 liters of of oxygen AND blow by. He definitely needed the higher level of care. And having a very present teammate to help me with his post op issues brought me so much peace.

It was a much needed reset for me, mentally and physically.

The wheelchair company came out and re-fitted Malachi’s wheelchair until we can get his new one ordered. It is genuinely shocking how much he has grown from this surgery. Even the little things, like his g-tube now being several inches higher, has thrown me off my game. He has such a long torso now, it truly looks like a different body.

I have a few photos of Malachi to share but he just hasn’t been himself and I wouldn’t want my post-op self posted on the internet so I am trying to be a thoughtful mother and post ones that were taken today after his nice head washing yesterday.

Malachi’s bloodwork triggered the alarms for a sepsis warning this afternoon so we will be monitoring his bloodwork closely over the next few hours to see if we are dealing with an infection issue. I am really hoping for a good report this evening after labs are drawn. We can’t handle any more hiccups or surprises.

We did travel down for x-rays Friday and the before and after transformation is pretty impressive.

Malachi is still in a lot of pain and definitely not anywhere near his baseline. He is able to tolerate the pain slightly better, only requiring heavy medications a few times a day and managing on Motrin and Tylenol the rest of the time. He was able to get his catheter out, his art line out, and several of his ICU leads. He was also weaned off of oxygen today, so one less tube there. He still has an incision vac (which we will come home with) and two drains coming out of the base of his back (which we will likely still come home with).

I am also having to re-learn how to hold him. Before he was very floppy so we supported him in a unique way. Now that he is rigid it changes where I can safely hold him and even the minor things like diaper changes are a thinking process.

He is starting to develop two pressure sores where his bony hips are pressing against the mattress. We REALLY need to watch these and prevent them from becoming true wounds so he is re-positioned every two hours. Complicating things even more is that plastic surgery doesn’t want Malachi laying on his incision so we are doing a lot of side-lying. And the bottom half of one leg is very much crooked now, which seems to be a new issue and likely due to the fixation in his pelvis. I will be asking them about this in the morning rounds!

He has been very sleepy and I don’t blame him. His body has been through so much. We wanted him to rest so we made the decision for Jake and Levi to stay home for this weekend and hopefully travel up later this week when he is feeling more like himself.

We are starting to think through the best way to care for Malachi when we get home and we have settled on turning the living room into a makeshift hospital room at least until we can get him drain and tube free. Jake is on it, preparing the space for him. It is going to feel so good to be back home! And to be together. We were able to use some of the funds people so generously gifted us to stockpile all the medical things we will need to keep Malachi comfortable and healing at home. Thank you so much for removing that hesitation from us and making it easy to prepare for the next leg of this journey.

Prayer needs right now are pretty easy for me to rattle off…

Pain management, equipment stability, no sepsis or any other complications, no pressure sores.

And I have a big one that is stressing me out more than it should…but please pray that we come home bug free. We found another creepy crawly (not sure that it was a bed bug but pest management said it could be a young one) in our 3rd room and their solution was to put a gown protocol on the door to protect the staff. I am horrified at the persistent issue and reactions here. I understand hospitals are frequented by lots of walks of life, and no one chooses to bring bed bugs in, but oh how much stress that can add to families like ours when we leave with a post-op child. They offered to treat our items again but that didn’t happen as we had surgery the next day. The items were bagged up and are now in my car and I am terrified that we will bring something home with us. I never laid on or sat on that couch and I have kept all my items as far away from the beds as possible. But my imagination is running wild and introducing a whole new stress.

And please continue to pray for our weariness as a family unit. We all miss each other desperately. We all crave normalcy again, and simply being under the same roof.

Regardless of when we leave we will have to be back multiple times in the next two weeks for follow ups and drain/vac removals. That’s a lot of ask for Malachi’s body, driving 3 hours each way on a light traffic day right after surgery. While we are eager to be home, we also want to be wise about minimizing our post op traveling, even if that means sticking around here a bit longer than we would like.

Thank you for checking in on our boy. He is such a warrior, sometimes it takes my breath away. And thank you for praying for him. Sometimes I don’t even have the words to speak to the Lord…it is an overwhelming prayer for a medical mom. I find so much peace in this verse.

Romans 8:26-27 “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.”

This is a wordless groans season for me, and I am incredibly thankful for the Holy Spirit, and for friends interceding on Malachi’s behalf.

Sincerely,

Leah

Malachi went down to the pre-surgery area this morning at 6:15am and officially went to the OR about an hour later. His surgery took all afternoon and he was finally taken to recovery around 5pm. He did require a blood transfusion and we will check his levels again in the morning. He is currently in the ICU as he is struggling with pain management and breathing, but he is stable and non-life threatening. He is just having a hard recovery.

The orthopedic surgeon is happy with the correction they were able to achieve in surgery with screws and rods running down his spine and into his pelvis. Malachi’s scoliosis was 130 degree curve, which is very significant, so achieving a change like this one is a really big deal. I can only imagine how much pain he must be in right now.

After the ortho doc finished with hardware plastic surgery was brought in to close the incision. This is a very important part as incision infection is a big concern. He has two drains placed and an incision vac to help promote healing at the surgery site. But the anticipation before surgery was that he would need a lot of plastic work done and possibly even skin grafting, so the fact that they were able to close him up with minimal effort was a praise. It also eliminated the need to go back to the OR with plastic surgery in 3 weeks, although we will have to go to the clinic 1 week post op and 2 weeks post op to have drains removed. That gives us more freedom in planning his shunt repair surgery a little bit more quickly.

They also removed his halo, praise the Lord!! I asked the surgeon if it was safe to say we are done with it forever and he said he wasn’t ready to declare that victory yet. The holes where the screws were are really hard to look at, but I am told they will heal quickly. Honestly he looks pretty rough right now all over. He is extremely swollen from surgery and looks like he has been in a car accident. His body has been through a whole lot, and he is very sensitive to pain right now.

Even though surgery is finished there are several complications that we will be watching for. And there is always a chance that equipment could fail in the years to come so he will continue to need monitoring. And respiratory and GI issues are continually on the radar.

We will take his healing a day at a time and stay as long as needed. Jake is on spring break next week which is helpful! Having an end of the work week surgery isn’t ideal; most of the regular specialists staff has weekends off so we are limited to just a handful of specialists to call and no physical therapists but we are praying for a restful weekend for Malachi.

I haven’t been fully transparent about some of the harder parts of these past few weeks, frankly because I am just not ready to talk about them. But one of the harder parts hit me last week as Malachi attempted to smile at one of his nurses. His lips curled up on one side in a classic Malachi grin and I watched as the muscles in his cheek shook uncontrollably, clearly weak from not being used and not smiling. I am eager to build those smile muscles back up in his face and see that brightness in his eyes again. I miss his joy so much.

I will likely try to update again on Sunday but will be spending this weekend focused on being present for Malachi’s healing. If he is up for visitors Jake and Levi will make the trip over this weekend! Thank you for lifting him up in prayer today and keep those prayers coming for a complication free recovery.

Sincerely,

Leah

Tomorrow is a big day for Malachi.

He will head back to the operating room for the third time in four weeks for a pretty major surgery. They will be removing his halo from his skull, which is a pretty minor thing in practice but monumental for Malachi. And most importantly, they will be doing a full spinal fusion, placing rods and screws along the sides of his spine from the top of his pelvis to the base of his neck.

We are praying that the halo traction was enough to stretch his spine and skin, requiring less plastic surgery involvement for his wound to heal.

We really need tomorrow to go well. We need a win. We need to feel progress. We need to see a clearing in the path of Malachi’s suffering.

I keep flashing back to Malachi’s birth. I didn’t get to meet Malachi until he was 3 days old, as we were both in pretty rough shape. But after I met him the neonatologists and several nurses sat Jake and I down in a small conference room and presented a bleak picture. He had terrible brain bleeds on both sides of his brain. He was only 1 pound 12 ounces and born without a heartbeat. They explained that he would likely never be able to speak, eat, or breathe on his own. The presented a life of suffering for our child. Then they asked us, “How would you like us to proceed?” They wanted to know if we would like to continue life-saving measures for our child or let him peacefully pass.

In that moment I wanted so desperately to believe in a God-sized miracle for Malachi. I wanted him to defy all of these words they were speaking over him. I wanted God to use my boy for one of His biggest miracles!

That day we looked at those doctors and said “He’s here for a reason, we want you to save him.” We believe that God determines our first and final breath, and every day that Malachi is still here is because God has chosen for him to be.

Some of you may read that and maybe even think that our decision was a selfish one, focused on what we wanted. You may even point at this road we are currently on and say “That poor boy…”, wondering if death at day 3 would have been more humane.

And if I am being perfectly honest with you…I have those same thoughts sometimes when I am in the dark corners of my mind. I have grappled with those same thoughts while I sat by his bedside and watched him struggle to breathe this week, in intense pain from halo traction.

We never got our “big” miracle. Our child has, in fact, lived a life full of suffering and hard things. And if I believe that this earth is all we are here for then we are pretty terrible people to have allowed him to go through that. We could have prevented his suffering.

But as children of God, Jake and I firmly believe that we were made for more than this world. We are all just strangers passing through a foreign land and heading home. And we believe that it is through Malachi’s suffering that God has revealed Himself to us, and to many of you.

And in between these monumental rounds of great suffering there has been such great joy for Malachi. His 12 years on this earth has been filled with contagious laughter, smiles, and a joy reflects the Lord. Knowing Malachi will absolutely change your life, your perspectives, and your definition of “quality of life”. Malachi is such a unique and special kid.

I am struggling to control my emotions as I try to type this next sentence….but it truly reflects every ounce of my heart….

If Malachi’s suffering has introduced even one person to the Lord, or strengthened your walk with Him in any way (as it has done mine) then it has given purpose to all of this pain. So many of us wander through this life, trying to figure out what mark we are meant to leave on this earth. God very graciously made Malachi’s purpose crystal clear…he was created to give this world a glimpse of the Father…his joy, his love for others, his purity. He has chosen Malachi to be a bright light in a broken world.

Malachi has been created to be a vessel of honor, chosen by God to carry out a very special purpose of displaying God’s glory and power through his brokenness.

2 Timothy 2:20-21 “Now in a large house there are not only gold and silver vessels, but also vessels of wood and of earthenware, and some to honor and some to dishonor. Therefore, if anyone cleanses himself from these things, he will be a vessel for honor, sanctified, useful to the Master, prepared for every good work.”

As Christians we often pray to “be used by God”, as if He were waiting on us to agree to a contract of sorts before hardships can come.

But I believe that while our willingness alone is beautifully honoring to Him, what He really asks of us is Lordship. It is trusting Him wholly and completely, accepting the path that He has chosen for us to walk.

As we go into tomorrow I am leaning heavily on God’s Word. When you don’t believe in God, suffering is just simply suffering. But when you believe in Him you can look past the pain and see glimpses of the purpose. Here are a few verses that have come to life for me again this week.

Isaiah 30:20-21 “And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you, saying ‘This is the way, walk in it,’ when you turn to the right or when you turn to the left.”

Romans 8:18 “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

There is a really good chance that this entry won’t make any sense as I am worn out and mentally cloudy. But as we enter another hard 24 hours I am covered with the peace of God. There isn’t an ounce of trepidation or worry in me, as I know we are exactly where we are meant to be.

We are ready to see that smile again!

Thank you for continuing to encourage our family. And to care about our amazing boy. Tomorrow he gets another pretty cool scar on his back. Another mark that tells of another battle our warrior has conquered. I will do my best to update the blog sometime tomorrow evening.

Oh, and just in case you were wondering, his brain shunt is absolutely disconnected. We verified it with CT this week and found imaging from October where the break was evident. We cannot fix it during tomorrow’s procedure due to infection risk but will schedule it with his neurosurgeon in 4-6 weeks in Chattanooga.

Sincerely,

Leah

Ahh so many changes and updates for this update. I don’t quite know where to begin. Malachi is still scheduled for his full spinal fusion on Thursday morning. This surgery will be several hours long and they will be removing his halo while he is in the operating room.

We are eager and ready for surgery day. He is up to 25 pounds of traction, although it feels like much more. It is so much weight it is actually sliding his body on the bed. We put him to bed in one spot and overnight he slides several inches up the bed, being pulled by the head from his weights. Just process that for a minute. Not being negative here, just being transparently honest and sharing our real with you for a minute. Sometimes when I type I find myself unknowingly trying to protect you all from the harsh stings of our trial.

Alright, well let’s start with the updates that I put in the “inconvenient” category.

On Thursday afternoon they decided to move us to a different pod in the hospital. They presented this as an exciting thing, but I immediately felt my stomach drop. By switching pods we were losing our continuity of care. We have several “primary” nurses, meaning that anytime they are on shift they are assigned to Malachi. He has been working so hard to communicate with them using his signs, and they finally were starting to understand his non-verbal cues. Starting over with a fresh staff and just a few days away from a surgery was pretty discouraging.

I can’t imagine how discouraging it was for Malachi, feeling like all the hard work he has been doing to build those relationships was a wasted effort. Again, the psychological aspect of this decision was ignored. It sometimes feels like there is an active attempt to break his spirit, although I want to believe this isn’t intentional.

They assured us that this was in his best interest as the nurses on the new pod had more experience with traction, but if that were truly the priority they would have moved him over there 2.5 weeks ago, not 6 days before his traction is complete. I advocating and explained my hesitations but they fell on deaf ears and stated that this was a decision made by management. I really wish the patient’s needs were the priority, not just logistical comfort for management and schedulers.

We got settled and unpacked in our new room. When bedtime came I unrolled my sleeping pad to make up my new bed on the couch and a bed bug crawled out of the rolled up pad. I am not sure if it came from the old room or the new room but it definitely didn’t come from our home. And the camping pad was a birthday present to myself last week and shipped vacuum sealed from Amazon.

Very long story short…I was able to catch the bed bug in a ziplock and hospital policy kicked in and they double bagged up all of our items, including all positioning pillows-wheelchair-breathing machines- and moved just our bodies into a new room (3rd room in 6 hours). The next morning they came in to present “options”.

Option #1 was to take our items home in the bags they placed them in. This was not even reasonable as we aren’t going home for a few more weeks, and there are things we HAVE to have, like Malachi’s wheelchair. Not to mention the fact that bagging bed bugs does not kill them. So we would be taking potentially infected items into our home…to deal with post op….after a traumatic hospital stay and 3 (now 4 but more on that in a sec) surgeries.

Option #2 was to treat our items with high heat in the basement. I am trusting that this is actually what they did but if I am being honest I have lost a lot of confidence in the ethics and policies of this hospital. We slowly received our items back over the next day. My new camping pad couldn’t be treated so I made the decision to throw it away. And I will be sleeping in a chair for the rest of our stay. There are already new patients in the contaminated rooms we left.

Now let’s transition to the “significant” update. As you can imagine, Malachi’s neck has been stretched an alarming amount through this process. He has been in pain since the weight increase Thursday with high blood pressures and high heart rate. We have needed to rely on narcotics again to keep him comfortable.

When the orthopedic resident rounded I asked him if this was the typical stretch and he said he would send a photo to the surgeon to make sure there weren’t any concerns. They came back a few hours later and decided to take him down for x-rays to verify things were still good. Malachi has to sit in a modified adult chair so he can stay on traction for these transports.

Side note- Levi and Jake visited this weekend and Levi made my heart smile in so many ways. When Malachi got rigged up into his chair Levi said “Ooooh Malachi I am SO JEALOUS of you right now.” I asked him why he was jealous and he said, “Because he gets to sit in a cool, fancy chair and I don’t! Malachi, I am just so jealous. You are so lucky!” Which made Malachi put on his proud face and absolutely melted my heart. Look at our little Levi, showing us wildflowers in this parched valley.

The imaging came back and showed that Malachi’s shunt tubing has broken. This is a really big deal, but I will have to take a second to explain why.

Malachi was born without a heartbeat at 24 weeks gestation and required 15 minutes of CPR at birth. The oxygen deprivation caused his brain to bleed and clog the ventricles in the inside of his brain. Spinal fluid could get into those cavities inside of his brain but not get out, causing hydrocephalus. When he was a few months old he had a brain surgery to place a device under his scalp called a VP shunt. This device has two catheters, or “straws”- a short one that goes through the skull and into his ventricles, and a long one (like 5 ft long) that runs from the VP shunt all the way down his body and is coiled up in his belly. This takes all the spinal fluid from his brain that can’t get out and re-routes it int his stomach cavity where it can be absorbed.

Shunt malfunctions happen often for most VP shunt kids. When they do it is typically an emergency brain surgery to repair the issue as the shunt is performing a very important job. If the fluid is not rerouted and builds up it can be a fatal. Because of this, we are OFTEN checked for shunt malfunctions. Anytime Malachi has to be taken to the ER for vomiting or lethargy this is one of the first things they check through imaging.

So Malachi’s shunt device IS working but the long tubing has become disconnected. They are telling me that they have imaging on file that shows this has been broken for 6 years. But that is hard for my brain to accept as we have had MRIs, multiple CT scans, and dozens of x-rays in the last several years and no radiologist or neurosurgeon has spotted it. I have spent the last day gathering all of the reports and imaging from his CT scans and x-rays from the last several years to see if this was noted when they were specifically doing the imaging to look at his shunt.

Some of the biggest indications of shunt malfunctions are headaches, lethargy, vomiting, and several others. It is hard to confidently tell with Malachi that his lethargy is shunt specific. And hard to determine if he has headaches consistently.

So we are still investigating all of this and trying to figure out the best course of action for Malachi. He will need to have another surgery to replace the broken tubing. We are trying to decide if this is an emergency need, if this can be paired with Thursdays surgery, or if this can wait until we get back from and try again in a month or so.

There are lots of other minor updates but they feel so unimportant right now.

Jake and Levi came down Thursday night and it was such a bright light getting to see them!

The amazing nurse practitioner even helped us take a family field trip down to the koi pond!

Jake and I had formed a plan when we were in our original room to switch places for one night, me going home with Levi and Jake staying the night with Malachi. We planned for him to learn how to take care of Malachi all day Friday and then we would leave Friday afternoon. We also made this plan based on his primary nurses being present and helping Jake, since they knew how to properly position Malachi. Now we had all new staff and limited comfort items to work with. With the bed bug incident I didn’t have any of his positioning pillows or even his chair to help teach Jake how to position him comfortably.

I was exceptionally discouraged and just told Jake that we would need to abandon our plan. We had already told Levi about the plan and here we were having to disappoint him as well. I got emotional talking to Levi about it and he just came and hugged me tightly, offering such grace about the change in plans. Jake felt confident though and so we worked all day Friday getting everyone on the same page and Levi and I made the drive home around midnight.

Spending time with him was so special. He kept bursting out with giggles, just so happy to have time with mom. We had so many good conversations about him, Malachi, and God’s plan. We acknowledged the hard. We cried. We laughed. We slept in the same bed.

The next morning I was able to go to our kids soccer ministry league, as it was the final game and medal ceremony. It was so precious getting to see those kids again! Their faces lighting up when they walked in and saw me was a gift. This year we had 122 players sign up, and I have been feeling like I let them down.

Levi and I wrapped up the league Saturday afternoon and headed back to Nashville. We ate a quick dinner as a family and Jake and Levi made the trip back home. Levi sobs every time he has to leave the hospital and it breaks my heart. I asked him when he and I left why he was crying and he said through his sobs “I just don’t want to leave Malachi.” He loves his brother so much.

Jake and Malachi had an uneventful day together and Malachi enjoyed the change of pace. Jake was impressed by how much Malachi likes to read books- he has finished several books series while we have been here and they are his first choice of entertainment these days.

It definitely felt odd being home without Malachi. I was in a known environment but not having everyone home with me made it feel empty. I did enjoy a consistently hot shower though and having access to anything I could think of that I needed. And it felt amazing to sleep in a bed uninterrupted for a few hours!

I am so thankful for my husband. He sees the yoke I am carrying and gladly straps himself in to help lighten the load. We work together, side by side, putting aside our needs to carry our children through heavy things. That kind of selfless love is a treasure, and being Kingdom minded instead of earthly minded has been the driving force for our relationship over the last 12 years.

While we have been here we have also been battling small fires in the other medically complex situations in our world. This week Levi lost his secondary insurance from the state and he doesn’t qualify for the same waiver program we were able to get Malachi on for medically complex children. In addition to airway needs and 31+ surgeries, Levi regularly sees specialists for his cerebral palsy, epilepsy, vision loss, a g-tube that requires monthly supplies, and several prescription meds. Just this week Cincinnati Children’s called to schedule Levi’s next surgery for June 5th. Removing his secondary insurance is devastating for our family. The state has done away with giving complex kids secondary insurance for presumptive disability and now only looks at income, and Jake as a high school math teacher makes too much money to qualify. It just feels like too much right now and I am so, so tired.

Personally speaking, I have become a bit dulled. I can feel the fight in me wavering. Like when you tread waves for such a long period of time that you just want to stop for a minute and let yourself sink to the bottom to feel release from the exertion. But my arms are holding a child above those waves so sinking just isn’t an option. But functioning in my own power is also not an option…it is an impossibility. I have no power left to give.

“He gives strength to the weary and increases the power of the weak. But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:29,30

I keep repeating this verse over and over again, as it feels like it the perfect verse for the mental space I am in. It fills me with hope, knowing that when I start to sink the Lord’s hands carry me back up to the surface. I don’t have to be strong. God’s strength is enough. It isn’t a back up plan for when my strength doesn’t cut it….it is the ONLY strength that can be relied on.

Too often I find myself using God’s promises as my back-up plan instead of my primary one.

Seasons like this one humble me quickly and remind me that my illusion of control is never enough. It is a house of cards.

My faith isn’t based on seeing God working. Faith is believing He is always working, even when I can’t find the evidence when I hunt for it. Those moments where we can tangibly point at the evidence are such a blessing but not a certainty when you are walking with the Lord. But I am selfishly praying that this is an evidence week for our family. That we can be encouraged by SEEING the good that God has been working through our hard.

This week is a big week for Malachi! We still have a lot of things to navigate and need to get some answers and plans established for the week. Please lift up his body, heart, and brain in your prayers this week. And that he continues to handle things like the superhero he is.

And please pray for fruitful, seasoned with grace conversations to continue with all the providers on his case. Pray that God takes all my word vomit and translates it before it hits the ears of his providers to we can all be the best teammates for Malachi.

Blessings,

Leah

Malachi is now up to 23 pounds of traction. He hit his original goal of 21 pounds on Tuesday and they decided to increase the goal to 25 pounds. Tomorrow we will reach his maximum, assuming they don’t change the goal again.

He has struggled with the increase and has days where he is in immense pain as shown by his heart rate, blood pressures, and communication. On those days he is given narcotics to help him cope, but even those don’t seem to take the edge of the pain off.

Then there are times where he just mentally shuts down and sleeps for days at a time, his body and mind simply exhausted. I am overwhelmed FOR him. I can’t imagine the inner dialogue happening in his mind right now, and the helplessness that he continually feels on a daily basis being exacerbated by the addition of pain.

Every now and I then I can get him to crack a smile. I cling to those moments.

I am still working hard to distract him as much as possible. There are nights when he is ready to play games and interact. And those are usually followed by days of sleepiness.

He went for x-rays this morning and there is visible progress in the stretching of his spinal cord. The first image on the left of each photo comparison is under 8 pounds of traction, and the one on the right is under 22 pounds of traction.

As I mentioned before, Jake and I can’t help but find comparisons with Malachi and the Princess Bride. It’s okay to laugh at the similarities.

Malachi is headed to the operating room a week from tomorrow to have a full spinal fusion. During this surgery his halo will be removed- in some ways it is like switching one hard thing for another. But then we will be able to focus on Malachi healing and making progress that isn’t undone every morning with added weights.

We are 17 days in and have at least 2 more weeks to go.

Jake and Levi are planning to spend the weekend here and Malachi and I are both looking forward to the visit very much! I need a friend right now to sit by the fire with me. Not someone to distract me, but someone to just sit and silently feel. There is a deep pang of loneliness that has started growing deep inside of me…not just for another human being present but someone that can feel the depth of the suffering without pity. I think Jake is the only fix for that.

(I know a handful of you are going to read that paragraph and just see the “I am lonely” part and try to gift me your presence; while I appreciate the thoughtfulness I have to be pretty selective with my time right now as I am actively caring for Malachi the majority of the day and can’t handle entertaining company. But THANK YOU for sitting by the fire with me from afar!)

I miss Levi with every ounce of my being. I have tried really really hard to not think about it, but I am going to allow myself a moment to mourn my path of motherhood. I am continually being asked to pick which child receives my attention and focus. Levi already has attachment issues with me; I can’t leave the house for more than an hour without him going into hysterics. Jake says he is waking up at night frantically yelling for me and trying to find me in the house. I wish I had been given a chance to prep him more for this outcome and distance.

If I am speaking honestly, I am extremely discouraged right now. Yes, we are seeing physical progress but it has come at such a cost. And I still can’t shake the idea that we could have done this differently from the beginning had I asked the right questions and advocated better for Malachi.

Sitting bedside and watching my boy suffer will never be something that my heart accepts…even when it is seen as medically necessary.

You may have read this on a previous post, but it feels fitting for tonight.

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

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

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

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

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

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

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

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

All this to say…don’t quit. The rain will stop, the giant will fall, and you will enter your “promised land.” Don’t give up at 40.

41 is coming.

Credit: McKenzie Miller

I am trying to stay focused on our Day 41. The day that Malachi is smiling again, released from these weights that steal the quality comfort from his life.

Please pray that the medical team continues to see Malachi for the complex and amazing boy he is, not just a textbook neuromuscular scoliosis case following a flow chart.

Please pray against my cynicism as we continue this process. Pray that I feel trust and confidence again.

Please pray that Malachi’s pain continues to be managed and we get to the other side without devastating effects to his mental health and spirit.

Please pray for Levi, that his heart won’t build resentment towards me or Malachi for the sacrifices we are asking him to make right now.

Please pray for supernatural strength for Jake and clarity of mind in taking on all of Levi’s medical needs during this time.

Thank you for the kind messages, cards, and gifts you have been sending our way. We have read and treasured each and every one and the Lord has been using you all to lift our spirits up greatly!

Sincerely,

Leah

We have officially been inpatient for 14 days now, with 10 more days until big surgery #3 (March 20). Malachi is up to 17 pounds of tension in his traction, and will hit his new target goal of 21 pounds on Tuesday morning. He will stay at 21 pounds until surgery, hoping to stretch out his spine, skin, and connective tissue in preparation for his full spinal fusion.

On my last update on Wednesday I shared that he was struggling with pain and still requiring PRN (as needed) pain meds. Thursday morning rolled around and it happened to be my birthday. I told Malachi that the only gift I wanted was a big Malachi smile, and it brought tears to my eyes when he gave me this treasured gift.

Bless his little heart, he spent the whole day smiling and giggling, working hard to make my day so special. Looking back, I should not have put that pressure on him. He was absolutely exhausted at the end of the day and fell asleep…for 19 straight hours. I got him to wake up for 3 hours and then he slept for another 13 hours. To go from giggly and smiling to this sleepy started to create a new anxiety in me.

Even a visit from the therapy dog didn’t perk him up. And he slept through his blood draws and weight additions.

I started having flashbacks of when he went into acute liver failure and we almost lost him after an emergency surgery a few years ago. His lethargy was incredibly similar, so I asked if they would draw labs and check his liver enzymes and blood counts. They graciously ordered the labs for me and everything came back in safe ranges.

After two sleepy days, today he has been a bit more like himself and he has not required any extra pain meds at all this weekend. His breathing is getting more junky and labored but it could be due to the increased weight pulling on his neck? He is so restricted positionally I worry about his ability to get enough air into his lungs and keep them clear.

Living in the hospital feels like the movie “Groundhog Day”, where each day he wakes up and things are the exact same as the morning before. Malachi’s doctors round at roughly the same time each day. His medication routines are identical each day. His visits from the respiratory therapist for breathing treatments and cough assist are also routine. Then in the in-betweens we cycle through his three different positions, trying to prevent bed sores from forming (and the one he has from getting any worse). Each position he has to be in requires a very strategic placement of pillows and postural devices to help the traction be the most effective. And there are still the normal tasks in between, like tube feeds and diaper changes. There isn’t really time for us to just simply rest…it feels like a full time job that doesn’t end, but just becomes one continual looooong day.

Again, a HUGE thank you to everyone that contributed to our family. We were able to purchase positioning pillow aids that have helped his breathing tremendously.

I am starting to get a little stir crazy and I imagine Malachi is too! We try to cycle through our entertainment options to keep us both distracted…toys and video games while in the wheelchair. Naps and music when he is side-lying. Movies when propped up in the bed. And every night he knocks out at least 2 hours of his audiobooks. He has already finished 5 large books!

Malachi is really enjoying all the opportunities to choose things. He has been really cute in that way, and I have all the time in the world to patiently work with him until we find the exact thing he wants to watch or do. I am so proud of him and the way he has been communicating with dozens of new people.

One of the highlights each day is getting FaceTime dad and Levi. We miss them so much. We have plans for a visit this week so please pray for health over Levi and Jake so we can make that happen.

We are seeing visible results of the traction, particularly with how tall Malachi is getting. If I felt comfortable showing you photos of his shirtless frame you would be absolutely blown away by the difference we are seeing in his rib cage and torso. The wheelchair company is coming by on Tuesday to get measurements for a new wheelchair as he is most definitely going to have outgrown this one when we complete the spinal fusion. I also need to order a new home chair that will keep his back in the proper alignment.

I have a lot of people asking how I am doing. I am in medical mom mode and just doing what needs to be done. I can’t afford to be selfish, even in my thoughts, so I choose to focus on the blessing I have been given to be the hands and feet of Jesus to Malachi 24/7 through this. God has made that task very easy for me, and it feels so right to pour myself out for him.

I am working hard at keeping my emotions in check and keeping a clear mind. It is really easy to slide into irrational and very hard to climb back out of that pit. The triggers for my PTSD in the hopsital run deeper than I even know, surprising me often. This week I kissed Malachi’s forehead and tasted salt on my lips, clearly from him getting worked up from pain and sweating. I instantly flashed back to moments of kissing Levi in the NICU, that same salt taste on my lips after and the sad reality that my children were hurting enough to sweat profusely. The helplessness that I often feel in this environment is so thick.

I ordered some DoorDash for my birthday and enjoyed a nice slice of cheesecake. I also got my hands on a memory foam camp pad, a legit pillow, and a real bath towel. So in hopsital terms I am living like royalty haha! Perspective is everything!

I shared this photo last week with you all and I have continued to look at it throughout the week, feeling like there is a powerful spiritual lesson that I needed to remember when looking at it.

Last night I was reading Romans and when I read this verse the Spirit pricked my heart…

Romans 5:3-5 “Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”

I have watched my son go through something incredibly unnatural and painful. We have asked his body to bear a burden it was never meant to bear. And I have watched him struggle under the weight, each day compounding and increasing his suffering.

But after a day of increase Malachi starts to adjust to the change and his body starts to submit to the greater ask, for his good…something that would not have been possible without the suffering.

I have watched his suffering produce positive change this week and I have seen that the suffering serves a purpose.

And when you walk in confidence that suffering is producing something great within us it helps make that added weight seem a little more…well…tolerable.

Our suffering produces perseverance.

Perseverance produces character.

Character produces hope. And not a baseless, well wishing hope, but a confidence in Christ hope. So confident that we can REJOICE in our sufferings.

I haven’t crossed over that line yet. The “Count it all joy” line in the sand. I will get there eventually with this particular trial…but I can’t claim to be there quite yet. My heart still hurts so much for Malachi and knowing that more suffering is coming with another surgery still steals my focus.

But I am starting to see so many scriptural truths come to life. Earlier today as I sang worship songs with Malachi I looked at that metal contraption screwed into my son’s precious body and despised it as the source of suffering it is.

But then the Lord led me to Isaiah 61:3 “And provide for those who grieve in Zion- to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of His splendor.”

These words were such a comfort to me this evening as I reflected on the fact that God gives us beauty for ashes and joy instead of mourning. This crown that is painfully attached to Malachi’s head right now will be removed and replaced with something beautiful…a functioning spine.

As we sang worship songs earlier I couldn’t help but smile, thinking about Paul and Silas sitting in prison doing the very same thing. I have joked with Jake about this room being a fancy prison cell (and the pit of despair from “The Princess Bride”), so the parallel made me chuckle. While the men were singing an earthquake shook the prisons the doors opened, and their chains came loose. They had the opportunity to escape that prison, but chose to stay. And as a result the jailer and his entire family came to know God.

Our time in the prison cells can sometimes feel wasted, but God is still certainly at work, accomplishing purposes only He can see. Sometimes we just have to sit back and praise Him through it.

Sincerely,

Leah

Malachi is officially at Day 10 and it looks like we have 15 days to go until surgery. He will need to stay inpatient for that recovery as well but hopefully he will recover as well as he did from round #1 before the setbacks and we can make it home by the end of the month.

Today he is up to 9 pounds of weight attached to his traction, and by next Tuesday he will be at his target goal of 20 pounds, increasing by two pounds each day.

We were hoping that he would acclimate well to the weight increase each day but he has struggled a bit with pain management. He has been signing often that he is in pain and will isolate the area that hurts. So far it has been head, neck, or back pretty consistently. I am so incredibly proud of how well he has been trying to communicate and be heard. I tell him every night he is the bravest and strongest person I have ever met.

We have settled into a routine of sorts, Malachi going to sleep around 1am each morning and doctors beginning their rounds at 5am. We have a pretty steady flow of people in the mornings, and it starts to trickle down a bit by the afternoons. Nighttime is when Malachi comes alive and we spend time playing games and trying to get smiles out of him. Shark Attack, iPad games, Go Fish, Old Maid, flying drone, puzzles, music, audio books, and movies. Tomorrow I have a few more toys being delivered that I think will be a huge hit!

We reposition Malachi every 2-3 hours into a new angle for his traction: 90 degrees in his wheelchair, 45 degrees in the bed, and flat when side lying (his most comfortable position). Here are some before and after x-rays from today; keep in mind that the after shows what his spine looks like right now while in traction. Our goal is to expand that crevice right above his booty so it isn’t folding like it is in the “before”. I am also happy to report that no other screws front last week’s fusion have pulled out of the bone.

When Malachi is hooked back up to traction after a reposition he starts to breathe differently from the tension and pain, kind of like a chugging breathing that shows extra effort. We initially thought is was positional, like an airway obstruction, but it has consistently continued so I think its safe to say it is a pain response.

We are trying to keep Malachi comfortable with pain medication as needed and so far it has most definitely been needed. The surgeon told me today that most kids are off of pain meds by now when on traction but I think with Malachi’s lack of muscle tone at baseline this new regiment is a shock to his system.

We have had great nurses over the last 10 days! We are thankful for the consistency in care we have received, getting the same nurses several shifts in a row who know how to comfortably position Malachi and communicate with him.

I have been having a hard time eloquently expressing myself with the doctors. Malachi is doing such an amazing job telling me when he needs support and meds, and I have been trying to push for that on his behalf. But in the process of trying to do this I fear I have become an annoyance, asking the same questions about pain medications each day from the same doctors. I also think that my overflow of tears on the days of surprises has discredited me in some ways. I think I am being seen as an emotional mess, but truthfully I have moved past that mode and am in my standard medical mom mode. We are no stranger to hospital stays, even long ones.

This morning was an emotional morning for me as I had a hard conversation with a doctor. He believes that Malachi’s prolonged pain isn’t a reaction to the increased tension but rather anxiety, and that feels that he is anxious because I am anxious. He said other children don’t need pain meds to the extent that Malachi does and that when they are in pain parents can distract them from the pain rather than give narcotics.

I want to give grace so I will assume that I misinterpreted his intentions with his comments, and that they weren’t meant to wound in the way that they did. At the end of the conversation I felt like his team saw me as a barrier to Malachi’s healing…which is probably one of the most hurtful things you could say to a medical mom. I also felt that he perceived a selfishness in me, not spending enough efforts entertaining my child away from his pain. Again, that one stung as I have been working so hard to preserve his mental health while we have been in here. That has been one of my top priorities and I am Malachi’s biggest cheerleader!

I recognize that I am fragile. And when someone is fragile they can quickly build narratives in their mind. But tonight I am feeling pretty raw, unseen, and discouraged.

There are so many layers to the trauma hospitals can produce in everyone involved. But in the end this isn’t about me, it is about supporting Malachi through something hard. So I am going to move past my hurt and continue to advocate and translate for my son.

Hospitals can be such dark places, full of discouragement from many different angles. It is a place where the devil runs freely in the minds of parents like me. It is very easy to lose focus on the Lord and His purposes.

Philippians 4:8 “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things.”

In 2018 I was sitting in an ICU in Cincinnati with Levi and this verse was pressed on my heart. I got out a sheet of paper and a pencil and sketched out this idea for putting it on a large wall in our home. We had moved into our new home just 6 weeks before Levi’s birth and the walls felt like a blank canvas for me. But I knew that our living room would be the space that I would need to cover with the Word of God, as we spend many hard hours in that space. As soon as I got home from the ICU I tracked down some barn wood boards and some paint and got to work. We started adding pictures of things that were true, noble, right, pure, lovely, admirable, praiseworthy, and excellent.

Over the years the photos have spilled beyond the original barrier of our canvas. As the boys have grown we have replaced many of the photos, each on chosen specifically to remind us of the great things God has done in our family.

This experience will undoubtedly leave another wound and another jagged scar. Most hard things in life do. We can easily choose to point at that scar and use it to remember the negative moments from this battle. Or we can choose to point at that scar and use it as a beautiful tattoo to show others of the goodness of God at work in our lives.

It’s all about looking for the true, noble, right, pure, lovely, admirable, praiseworthy, excellent….it’s about looking for the attributes of God….the evidence that His goodness is still very hard at work.

Preaching to myself tonight as I wage a war with my wounded heart. But sometimes wrestling with the things of God is necessary to build the muscles of our faith.

Please keep our family in your prayers. For stamina and clearness of mind. Pray that Malachi’s health remains strong enough to continue with our surgery plan in a few weeks. Pray against complications that may arise between now and then. And continue to pray for Levi and Jake. Separating our family is so hard on each of us, but especially Levi.

Finally, Malachi will be in the same room for the next few weeks. If you would like to send him a note of encouragement here is the address to send it to:

Monroe Carell Jr. Children’s Hospital at Vanderbilt (Malachi Carroll, Room 8531) 2200 Children’s Way Nashville, TN 37232

Thank you for loving our boy and continuing to check on him.

Leah

This weekend was full of ups and downs as Malachi’s body is still adjusting to the new requirements. Right now he has a 3 pound weight attached to his halo pulley and starting tomorrow we will be increasing by 2 pounds a day until we reach 20 pounds (almost half his body weight) and head to surgery in a few weeks. I am sure you can imagine the physical ask that will be on his head, neck, and back.

Saturday morning Jake and Levi made the three hour drive over to spend the weekend with us. When I told Malachi they were coming he smiled for the first time since his 2nd surgery. He was so excited that it made me cry uncontrollably.

Here is a sweet video of me telling him and his response:

My emotions are very fragile right now and it doesn’t take much to lead me into sobbing. I am feeling so many emotions for Malachi…fear, pain, anger, frustration… Seeing that smile on his face again melted me.

Malachi was so excited about their visit that he stayed up all day to spend time with them. Last night they left to go to a local hotel and Malachi’s body started to panic. He used any reserve he had and was in an incredible amount of pain. I asked him where it hurt and he signed that it was his head and neck. Sadly there isn’t much we can do other than give him pain meds, but even that wouldn’t calm him down and I watched panic spread across his face. He started breathing hard and his heart rate was racing.

We finally got him calmed down around 3am and he has been sleeping ever since (it is 8pm Sunday night here). I imagine he will be up most of the evening, but I am thankful he was able to get a little rest after his painful evening.

The guys headed home this afternoon and we are settled in for another week. Jake was able to refill my supplies here and their visit was the distraction that we all needed from the hard things of the week. It felt good to smile again.

Levi was precious with Malachi, and has missed him so much. He kept sneaking over to his bed and whispering encouragement to him… “I am so proud of you Malachi!” And “I’m sorry you had to have more surgeries Malachi.” Their love is so genuine and special.

And Malachi LOVED seeing his dad. We are such a close family and we feel these moments of distance in big ways. All of us. Levi went on walks around the hopsital and dad and Malachi watched some sports together, one of Malachi’s favorite things to do with dad.

Malachi’s seizure activity has increased steadily throughout the week. At his baseline they are triggered by pain, so I suspect we will be seeing a lot more seizure activity through this process.

He has already started developing some bed sore spots with his rigid positioning and his incision site is extremely angry. I am hoping we can keep all secondary issues at bay since we are still in a pre-op window for the next surgery.

The surgeon has told us that the best possible position we can have Malachi in is how he is positioned in his wheelchair, so we have been trying to slowly build up a tolerance for that upright position.

I am finding a groove in our new space. We have spent many nights in hospitals and thankfully Vanderbilt does a great job at being caregiver friendly. There is a washer and dryer on our floor that I have access to and each room has a private bathroom with a shower. I even have a mini fridge in my room and access to a parent kitchen with ice, water, and a microwave. The hospital does not provide meals here to parents but there is a food court style area with a Taco Bell, Pizza Hut, Subway, and Baskin Robbins. I am on a first name basis with the Subway workers at this point. The adult hospital cafeteria is about a 20 minute round trip walk so I don’t go over there often. I don’t like being away from Malachi for longer than a few minutes at a time.

With Jake here we tried our hand at Door Dash and somewhat have that figured out for the days that a sandwich isn’t going to do the trick. And I have a shelf of snacks to get me through the other meals of the day.

Malachi’s amazon surprises have started coming in and I am so excited to unveil those during his harder days. It feels so good to have something on hand to cheer him up a bit. One of my biggest fears in the last 24 hours is that we are breaking his spirit. Last night he was so discouraged and frustrated. He stopped signing and shut down, eyes glassed over. It must be so hard to not have a voice and try to go through something so hard.

I also fear that we are going to come out on the other side of this weaker than every before. The few muscles he was able to use are not restricted and not able to be used. I am so afraid he is going to have zero head control when we leave.

Last Thursday as we sat in the pre-op area waiting on his operating room to open up a large group of adults walked in front of our area and stopped. Our nurse closed the curtain to give us visual privacy and explained that they were giving a hospital tour, as it is a teaching hospital.

We couldn’t see them, which I was very grateful for and I tuned them out for the most part as they talked about the policies and practices of the hospital. But for some reason my ears tuned in as the man leading the tour said one specific line (speaking generally about a policy): “…the patient should have been deceased and we shouldn’t have expended all those resources on the patient.”

I felt my heart drop into my feet when I heard these words, recognizing that many feel this way about my Malachi. That the logic of healthcare says he is a waste of resources. And while it broke my heart to be reminded of this, it made me incredibly grateful for the healthcare workers that were in that cold hospital room the night he was born. They saw Malachi as a unique individual, worthy of lifesaving attempts, regardless of the expenses. And I will forever be grateful to those hands that performed 15 minutes of CPR on his 1lb 12oz body. And it made me so thankful for the healthcare workers that “see” my Malachi for the amazing, worthy, perspective changing child of God that he is.

Throughout this past week I have had so many doubts that the people working on and with my son truly see him. That they see the amazing 12 year old that he is, not just the medically complex kid with a twisted frame. I am thankful for the few lights we have had this weekend on his care team that have taken on the task of creating the best environment for him to heal.

So this weekend was a big deep breath for me, a reset of sorts. I can’t change our circumstances and I can’t undo what has been done. So we move forward and hope that there is a finish line around one of the next bends in the road.

A few weeks ago I felt led to a specific song, “I Believe” by Charity Gayle, and it has been played on repeat for about a month. On Monday morning as we pulled up to the hospital for surgery I had it on in the car. There was a particular line that struck my ears and I have since then thought a lot about the words.

I believe You are who you say You are, You do what You say You’ll do,

You’ll come through, You are always able

I believe You’ve already made a way, so I’m running through parted waves straight to you, You are always faithful

I don’t know why this part of the song suddenly popped out to me. But I started thinking about the story in Exodus where God parted the Red Sea and the Israelites walked across safely, on dry land.

I laughed to myself that morning as I circled the parking garage and found a parking spot. I was thinking about what I would be feeling as I walked through the middle of the Red Sea, experiencing a miracle firsthand. And coming to the conclusion that I would probably be shifty eyed at those wave walls on either side of me as I made that journey through the Red Sea….literally running due to my innate mistrust.

But as this week has played out I can’t help but continue to think about this.

I trust God. But do I trust Him enough to enjoy walking the paths He has laid out for me? Do I trust Him enough to not question my safety in the Sea? T

This week has been a whiplash week as I look to the right and left desperately, trying to figure out how we got here. And trying to figure out how to escape.

But I have to keep remembering that we are exactly in the center of God’s will and that is the safest place we can ever be. I don’t know why we are here. But I don’t have to. Faith is walking through those waves without hesitation and side eyes.

2 Corinthians 4:16-18 “Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not see are eternal.”

May this week be an eternal minded week for each of us.

Sincerely,

Leah

Malachi just over 24 hours out from his last surgery and it has been a day of learning. The halo gravity contraption that they have him rigged into is hard to navigate and it takes a lot of effort to get it into just the right position for it to do its job but also allow Malachi to breathe safely.

As you can imagine, Malachi is miserable.

Malachi keeps signing that he is in pain. As he should be! He has been through so many painful things this week. We are alternating a few pain meds, trying to keep him comfortable but after a bit he gets uncomfortable again. I am not really able to mother him independently. Even changing a diaper is incredibly complicated and requires all the weights to be taken off by a nurse and then reset when we are done. They placed a catheter last night to limit how much movement we are doing but we plan to take it out tomorrow.

Today a team came by to tighten the screws into his skull, which was hard for all of us. We also got him seated in his wheelchair and rigged his halo to dangle off a pole attached to his bed. He made it a few hours before he got uncomfortable.

Overall my boy is so sad. I am trying so hard to not be miserable on his behalf, but the idea of doing this for 2-3 more weeks is hard to process for both of us. They keep telling me that he will get used to it, but I am not so sure. I miss his freely given smiles and contagious joy.

He did have a visit from one of the therapy dogs in the hospital which was a fun treat. I also spent some time shopping for surprises on Amazon that will help distract him from his pain. Those should start coming in this weekend to a friend’s house in Nashville and perk him up a bit. Thank you to everyone that helped contribute to those surprises for him. It blessed my heart so much to be able to shop for him today without budget limitations. It was the one mom thing I got to do today, so thank you on behalf of Malachi and also on behalf of me!

Jake and Levi will be here for the weekend as well, which we are hoping will perk him up! Prayers for Levi as he tries to process Malachi’s new equipment and suffering.

We are trying to restart Malachi’s feeds slowly and that combined with his pain is triggering his seizures. The seizures don’t respect the device he is rigged into and sometimes that puts him in positions that cause more pain.

I asked for them to slide his body a little to the side so I could have a spot to slide into bed with him during the daytime hours. I may not be able to mother him right now or take care of his needs but I can be his friend and help him feel not so alone.

This isn’t a very positive update, but I don’t really feel compelled to fix that tonight. Last week as I was packing our bags for surgery I found Levi in the bedroom, curled up in bed and sobbing with the lights out- clearly upset about us leaving for surgery. I asked him what was wrong, and his precious response was “Nothing, I am just having a sad night.” So I laid down in the bed and cried with him, reassuring him that it was okay to have a sad night every now and then.

So tonight is simply just a sad night.

I am so thankful for the Word of God, as there is something in it for every emotion, every trial, every circumstance that we may face. And tonight I am thankful for the reminders about our dark seasons in life.

Psalm 34:18 “The Lord is near to the brokenhearted and saves those who are crushed in spirit. Many are the afflictions of the righteous, but the Lord delivers him out of them all.”

It may be a sad night- a crushed in spirit night- but because of God I can have hope the current is slowly pushing us towards dry land. We will find our footing again soon. And I am confident that God is still with us.

Sincerely,

Leah