Malachi checked in for surgery at 5:30am this morning and is still in the operating room (3pm). We just met with the spine surgeon while the general surgeon puts him all back together.
Malachi had a successful lumbar spinal fusion (L4 to T12) with screws and rods and a tiny bit of cadaver bone from the anterior side. This surgery was done to prepare his spine for a full fusion in round #2 on April 7th.
Malachi’s body has been so contorted that there was a fear that his skin would not be able to stretch enough to heal should we have done the full fusion now. We are going to do a consult with plastic surgery while we are inpatient and discuss a few more options to get his skin to handle the wounds of round 2 better and decrease infection risk.
The biggest fear right now is something secondary happening post-op, like a pneumonia or GI issue. He will have chest tubes for a few days to help the fluid drain out of his lungs. For this procedure they inflate the lungs separately to allow one to remain deflated enough to get tools behind and do the fusion. His lungs have definitely been through a lot today.
The plan is to spend some time on the regular floor until his pain is well managed and we can get chest tubes out. They will also be drawing labs and watching closely for infection.
He did not require any blood transfusions, which is a praise! There was also talk of doing a knee tendon release and him going into casts so that they could get better positioning for him for the second surgery. But they were able to get enough bend in his knees under anesthesia to avoid the additional work. And we are all praising God over here that he doesn’t require halo traction!
I am still waiting on the full report from the general surgeon and anesthesiologists but overall everyone seems pleased!
I will do my best to continue updating at least once a day. Thank you for the prayers and support!
Malachi and I made it to Nashville and are settled into the hotel room for the night. There are a lot of moving parts to traveling for a surgery so tonight is pretty regimented out for us. We brought his nebulizer, cough assist, and CPT vest to keep his lungs as healthy and clear as we can before tomorrow morning. We also packed a bath chair so I can give him his final pre-op bath and wipe him down with chlorahexidine to sanitize his skin for surgery. We also will do final doses of medication and g-tube feeds right before midnight and try to catch a few hours of sleep.
Don’t tell on me, but I borrowed a luggage cart “long term” to get all of his gear into the room and since we are leaving very early in the morning we are just hanging onto it for now. Our car is packed with enough supplies for 10 days and if we need to be here longer we will make it work!
Malachi is one of the first surgeries in the morning and checks in at 5:30am CST. Once he is taken back we are expecting the entire procedure to last 7-8 hours.
This past week things got a little complicated as Malachi started running a random low grade fever. We wanted to make sure he was at his best for surgery so we met with his pediatrician to rule out ears, throat, etc and met with his pulmonologist to listen to his lungs. Thankfully everything came back clear and his fever stopped.
Levi has been an emotional wreck and can use some big prayers for peace. He keeps asking me if Malachi will be going to heaven tomorrow, and his fear just breaks my heart.
Malachi is in great spirits and enjoying the one on one time with mom. I filmed this little video for you so you can share in his joy.
This week has been a very tender week for me and the Lord.
Psalm 23:4 “Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.”
While this surgery itself feels like a call to enter the valley of the shadow of death, the truth is that we have been in it for quite some time. This week as we spoke with Malachi’s pulmonologist and compared x-rays we were able to LITERALLY see that shadow of death creeping into my child’s lungs and threatening his life. You can compare these images and see how restricted his lungs are (the black areas behind his ribs).
We get so tired of this valley…the discouragement, the stench of death that distracts us, the darkness that dances on the edges of our minds as we consider the “what-ifs”.
This week I gave myself a chance to enter the thought trails of the what-ifs. And I sobbed as I thought about life without my Malachi. But then God did something so special….
He extended His rod and His staff and gave me His eyes for a moment.
He gave me eyes to see that the first steps Malachi will take are on streets of gold as he runs toward the Lord.
He gave me ears to hear that the first coherent words that Malachi will sing will be in the presence of the King.
The first time my Malachi will be able to bend his imperfect knees and bow his twisted back will be as he kneels at the throne of God.
God reminded me that the outcome of tomorrow will be exactly how He intended it to be.
Sometimes God takes us on journeys through the valley of the shadow of death so we can develop eyes that truly see the beautiful things He has been leading us to.
“Shall we accept good from God, and shall we not accept adversity?” Job 2:10
Tomorrow we will venture a bit deeper into that valley. And I am absolutely still feeling ALLLL the emotions that come with that journey.
But tonight I am grateful for the portion of comfort and peace that God graciously anoints us with within those trips through the valley.
I will be updating on the blog as often as my brain power allows but it will likely be later in the evening. Thank you for the continued prayers for each of us.
A lot has happened in the last two weeks. Let’s start with some easy updates…
Levi lost another tooth. And I just can’t get enough of that sweet smile and new lisp.
Malachi had a special 12th birthday, and celebrated with his friends at school. He was so excited to bring ice cream for them and go to lunch (usually he goes in the afternoons after lunch is over).
He has such a fun personality and I love watching him interact with people outside of our family. I love that he feels confident enough to use his “voice” (signs) with others.
Levi has been building forts for him and Malachi to play in, which they both thoroughly enjoy.
Now let’s move on to the hard updates. I haven’t fully processed all of the information myself so bear with me as I try to translate it in real time.
About a week and a half ago the boys and I went to Vanderbilt to tackle 4 appointments. We met with his foot surgeon and got the final clearance from Malachi’s November foot surgery. We also met with the spinal surgeon, the anesthesia team, and did bloodwork to prep for surgery.
The spinal surgeon came in to talk through the surgery with us and we have had several calls with him since to clarify the plan. It is relatively complicated so I am going to give you a very general overview of what we are working with.
Malachi will head to the operating room first thing next Monday morning (February 24th). This surgery is to prepare his spine and skin for the second big spine surgery April 7th and will be focused solely on the lumbar portion of his spine down to his pelvis. They aren’t able to do a full fusion right now as his skin and spine aren’t able to tolerate the stretching that needs to take place.
He is the first surgery of the day and this one is expected to last 6-7 hours. They are going to cut an incision through his right side to gain access to his spine from the front. They will need to move his lungs and several organs around to get access to the spine and they will be scraping the discs out from in between each vertebrae. The final goal is that nature will take its course with bone resting on bone and “heal” itself together, thus fusing it. But it will need to be supported with several screws and plates.
In an ideal situation this will be easy to do. (Plan A)
It has potential to get complicated. They have options in place to be able to use cadaver bones to place in between the vertebrae if needed. Complications will lead to a slightly modified version of Plan A , so we are calling it Plan B.
If they aren’t able to get a good angle with the screws and plates and get the spine in a position that will set him up for success for the April surgery we will have to go to Plan C. The surgeon mentioned this one in our phone call on Friday and I haven’t been able to shake it out of my brain ever since.
Plan C is putting Malachi into a halo traction device after the procedure. They surgically pin a metal ring into Malachi’s skull and suspend that halo from a device that increases weight/traction slowly over time. The goal is to stretch out his spine before operating. He said that if we have to do this plan that he will be in the device (and hospital) long term until his April 7th surgery. Here is a photo I pulled off of Google so you can get a visual.
Each plan comes with its own hospital duration, with as little as a one week stay and as much as a 7-8 week stay. When we originally talked about this surgery in October it was 1 procedure and the recovery was quoted to be “about three days on the regular floor”, but obviously things have gotten more complicated the more they looked at his images. We won’t know until they open him up and start to work which route they will have to go. And again, this is all just preparation for another spinal fusion that is taking place in just a few weeks.
Maalchi is anxious and very nervous, and it breaks my heart to see him worry. Levi broke down into tears during the pre-op appointment when the surgeon was talking, filled with empathy for Malachi. We stopped the appointment and let him ask the doctor questions; “Do you think my brother will die in this surgery?” Ughhhh. We were all fighting the tears back and I was absolutely regretting my decision to bring him along.
Jake and I are feeling overwhelmed in so many different ways. Our first concern is for Malachi and the hard things he is about to endure, mentally and physically. This surgery has to be done…if it is left untreated he will reach a point where his organs are too smashed to be able to breathe and function. But what a massive thing for a 12 year old to endure. We expect this to be a massive hit to his lungs and they are already so damaged.
We worry about Levi. About how he will handle the schedule changes with us being apart. And how he will handle Malachi’s suffering, even if he isn’t there to witness it. God has blessed him with a generous portion of empathy and he feels so much. And he loves his brother tremendously. Jake will be staying home with Levi to help establish a bit of normalcy for him until we figure out what plan we have to proceed with.
There are so many things about this that take my breath away.
I don’t know when it happened but at some point in my life I developed the habit of compartmentalizing as a defense mechanism to help me manage stressful things. Compartmentalization is where a person separates conflicting thoughts, emotions, or experiences into distinct mental compartments to avoid discomfort and anxiety that can rise.
I can package up my emotions about something and put it on the shelf for later so I can focus on that day’s tasks and not be overwhelmed by what is locked in that box.
But eventually I have to pull the box off the shelf and open the lid. And this weekend I have started that process.
Sometimes we have emergency surgeries and I don’t time to process my emotions until after we get home. This is not one of those situations and the anticipatory grief I am dealing with is very real.
I am trying to busy myself with packing, but even that has been evoking so many emotions as I try to plan for a 1-7 week stay. How do you even begin to pack for such an unknown amount of time??
And in the process of thinking through what to pack I have allowed myself to consider the details of what Malachi is about to endure. And my heart just aches and aches for him.
This weekend I have been singing praise songs to keep my mind focused on God’s goodness. And each one makes me weep as I truly see that even in the hardest moments we are called to He is ever present and still working. I know there is a purpose in this surgery experience. There is a God plan we can’t see hidden deep within it. And even if I never get the chance to spot it, I trust that God’s plan is always perfect.
But I am still very overwhelmed. And emotionally fragile. I have had many people reach out to ask how I am doing, and if I am being honest I don’t prefer to talk about the surgery. I am just too fragile to enter those conversations right now.
I read a simple prayer written by David in Psalm 16 this week and it reflects my heart’s desire so perfectly.
“Preserve me, O God, for I take refuge in you.”
I am aware that there is nothing I can do to take Malachi’s place. There is no magic mom fix that will make this easier for him. So I have to lean on God, knowing that He is THE Comforter that will carry my son through this.
Some of you read things like this and decide that I have a magnificent faith. That my faith is somehow greater than others.
But the reality is that my faith is a survival faith. It is brewed in complete and utter humility as I know that I am not enough and He MUST be my portion as I am unable to carry this load alone.
“The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise.” Psalms 51:17
My spirit is broken. My heart is contrite as I look at all the times I fail to remember the goodness of God, even within suffering.
Please keep our family in your prayers over the next several weeks. I will be posting surgery updates on this site as a way to communicate, but please be respectful and sensitive of our focus on surgery day. The primary way the surgeon communicates from the operating room is through my cell phone, calling at least once an hour and more often if there are complications. Surgery days are focused solely on our Malachi and providing updates is pretty low on the priority list on those days- but please don’t think we aren’t grateful for your concern and prayerful support!
Thank you for walking through this journey with us, holding up our arms when we get weary.
Our family has never been very “extra” for birthdays but lately it just seems like we all need things to distract us and bring on some smiles. My motto lately has been “We’re making memories!” And with a tiny bit of supplemental income from my part-time job we are able to say yes to extras!
Jake turned 40 years old last week and we decided to celebrate with a quick trip about an hour away. We found a small AirBNB with a pond out front for fishing and a local state park close by with frisbee golf.
We spent most of the weekend sleeping in and enjoying not having a schedule! And fishing for catfish with some hot dogs.
On the night of Jake’s actual birthday we went to a restaurant at the top of a mountain that had outside seating in a bubble. I am not exactly sure how else to describe this experience, so hopefully pictures will help.
The food was delicious and the whole experience was so special. Malachi loved the echo of the bubble and the frequent zipper noise that happened when the waitress came in and out. They were comfortably heated too!
We drove back down the mountain and got settled back in the rental…and then BOOM! The stomach flu enter the scene about 30 minutes later. We definitely made memories that weekend…not all great memories but definitely unforgettable experiences haha.
We have spent this last week at home getting back to normal and re-entering the world again.
Next up on the calendar is Malachi’s birthday! With all of the hard things that Malachi has coming up we thought it was a good year to make it extra special. We rented the local skating rink and sent an invite home with every student at his small school.
Leading up to the day Malachi was giggly every time we talked about his party. When the day officially came he actually seemed a little nervous.
But those nerves disappeared quickly when his friends showed up and started fighting over who got to take him on the next lap around the rink!
His joy was contagious, and for several of the kids there that was the first time they had seen that silly side of Malachi. He was definitely in his element out there with his friends!
I was talking to him about the party tonight and his smile just melted my heart.
We definitely made some memories, and I am so thankful we will have some recent fun things to look back on! He will officially turn 12 on Tuesday and lights up anytime I mention it.
Levi did surprisingly well on the rink too, falling often but getting right back up again.
Sometimes when I look at Levi I forget about the journey that he has been on and the challenges he faces. But here is my sweet boy with cerebral palsy and so many other challenges skating unassisted on a rink. God has been so good to our family.
This week Levi will do a check-in with the neurologist to discuss his epilepsy and cerebral palsy. This should be an uneventful appointment as he is doing really well right now. We do need to see if his seizure meds need to be weight adjusted based on how much he has grown.
The boys and I will head to Vanderbilt on Wednesday for all of Malachi’s pre-op appointments with the spine surgeon and anesthesia. We are also knocking out his final post-op appointment from his November foot surgery. It will be a long day, but I am eager to speak with the surgeons and get a concreted plan in place. Surgery is still scheduled for February 24th.
Our children’s soccer league will start up tomorrow and we are all buzzing with excitement! This ministry league launched 4 years ago and this year we had 120 children register. The kids practice once a week and play games on Saturdays and we lead a devotional in the middle of each practice and game! What an opportunity for us to share the Good News of Christ with each of them for the next six weeks.
This season is a bit more complicated with a big surgery scheduled for the middle. Thankfully we have recruited enough volunteer coaches to step in and help the week-ish that I am out with Malachi. And it has been a good exercise for me to practice trusting God and allowing others to help.
Each year I spend months in prayer, trying to seek exactly what God wants me to share with the children. Last year we walked them through the gospel message, a week at a time. But this year the Lord has been very clear on the direction we are meant to go.
In Acts 4 Peter and John are arrested for teaching the people about Christ and His resurrection from the dead. They are taken to jail and put on trial the next day. One of the descriptions that I love the most about this scene can be found in verse 13, “Now as they observed the confidence of Peter and John and understood that they were uneducated and untrained men, they were amazed, and began to recognize them as having been with Jesus. And seeing the man who had been healed standing with them, they had nothing to say in reply.”
They decided to let Peter and John go, commanding them not to speak or teach at all in the name of Jesus. Their reply was so powerful in verses 19-20.
“But Peter and John answered and said to them, ‘Whether it is right in the sight of God to give heed to you rather than to God, you be the judge; for we cannot stop speaking about what we have seen and heard.’”
It is easy to know a lot about God. You can study the Word of God and fill your head and heart with knowledge about Him. But walking in relationship with Him takes it that step further…that step to actually KNOWING Him! He is a knowable God and craves a relationship with His creation!
I have been thinking back in my life to the first encounters I had where I realized that God was a knowable God and that He truly cared to know me. When I reflect on the God moments in my life I can spot so many from childhood that were monumental in developing my faith. Moments where God saw me in my distress and intervened in beautiful ways.
If we all embraced the heart and attitude of Peter and John in this scripture and “cannot stop speaking about what we have seen and heard” can you imagine the fruit that that boldness could produce!
These next few weeks I will be sharing MY Jesus with the children. And I want to encourage each of you to do the same with the people in your lives. What is your greatest God story? What are the moments in which you knew without a doubt that God was living and active? And why don’t we talk about those moments more often?
Please be in prayer for a new airway buddy of ours, Hank. He has a very similar diagnosis as Levi and made it to Cincinnati yesterday after a traumatic few weeks in Nashville. He meets with Levi’s same surgeons tomorrow to figure out the next steps towards a stable airway- join us in praying for miracles for Hank!
Where we live in Tennessee we don’t often get snow, but when we do it shuts this area down for a bit. We don’t have the salt trucks and snow plows that the North has and the differing altitudes means that even when the snow melts in the valley many are still snowed in right up the mountain. Jake has been off from school for 7 straight school days!
The boys loved playing in the snow, especially Malachi! His smiles were absolutely amazing. He is absolutely a thrill seeker so going down those steep hills in a tube made him burst with joy.
After 11 days on oxygen we were able to wean Malachi off and get back to an easier, normal routine (just in time for the snow). I think one of the best parts about getting him off of oxygen is getting to sleep in a bed again! When he is hooked to so many machines it is really difficult to relocate him from the living room. His oxygen concentrator, pulse ox machine, and breathing treatment machines (every 4 hours) all require to be plugged in. And transferring him safely and then moving all the machines to a separate room just doesn’t make sense. Malachi and I call it “camping out” and try to make it fun, but truthfully that first night back in a bed and not sleeping on the floor is glorious!
Malachi made it about a week before secondary crud started to develop in his lungs so we are now on day 5 of a round of antibiotics and back to “camping out” due to intestinal issues that need continuous addressing. This season of sickness and the long term secondary effects comes around every year; I am glad it came as early as it did so that we would have time to address it before his pre-ops and surgery next month.
We have spent a lot of family time together at home, playing games and making memories. Both boys are pretty competitive and their favorite games of choice right now is Mouse Trap and Old Maid.
We have also been working on crafts, making snowflakes to hang on the windows. I realized when I started posting that I have a ton of photos of Malachi…he has just been so happy lately and it brings my heart so much peace to see him comfortable and himself after being sick. I obviously love Levi with all my heart, even though I don’t have many photos of him this week.
A few nights ago Malachi and I were up late and he was indicating that he wanted to talk. I asked him what he would like to talk about and gave him a list and he quickly chose “surgery”. I asked him if he was scared and he immediately signed yes. I had to take a deep breath because the truth is that I am scared too.
I kept going with the questions, trying to isolate what part was making him nervous. It wasn’t the surgery itself, or going back with strangers, or spending the night in the hospital. I asked him if it was the pain and he signed yes.
I was actually thankful for that answer because it is one we can control and one we can create a plan for. I explained that his body is really good at communicating when he is in pain and his heart rate will tell us when he needs better pain meds. I assured him that I will be watching him closely and will be his voice for him, making sure that he gets really good pain meds. I also explained that staying on pain meds longer than other kids will keep us in the hospital longer but that is totally okay with me. We talked for a few minutes and I asked him again if he was still nervous and he signed no, content with the answers.
But the truth of the matter is that I am still very, very anxious. Malachi’s body has changed so much in the last year. It has contorted in ways that are hard to look at and I am in a reality check of recognizing that surgery is hard, but doing nothing is going to end his life. The amount of pressure that his spine position is starting to put on his lungs has to be so scary for him. I spoke with someone a few weeks ago that had significant scoliosis as a teenager and she shared that she has vivid memories of her being scared and not being able to take a full breath.
I know that surgery has to happen. And I know alllllll the Biblical truths that you are probably cycling around in your head right now as they also cycle through mine. But sometimes when you are facing the Red Sea you get distracted from Truth.
I read an Elisabeth Elliot quote this week that made me think long and hard.
“Fear arises when we imagine everything depends on us.”
There a lot of things in Malachi’s life that depend on me and my abilities to take care of him. There are a lot of things I can control, like medication schedules, appointments, and calorie counts. But when these things arise that I can’t control or fix for him I can physically feel the fear creep into my heart.
I have to keep reminding myself that while I am a very significant person in Malachi’s life, I do not hold his timeline in my hands. I did not determine his first breath, and I will not determine his last. Because I do not know the bigger picture of God’s plan in Malachi’s life.
Not everything depends on me.
I am called to steward my opportunity to be Malachi’s mom, working with all my heart as working for the Lord (Colossians 3:23). And have complete and total faith that God is doing a VERY sufficient job carrying out the plans He has for my amazing son.
Psalm 19:14 “Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O Lord, my strength, and my redeemer.”
This right here is my personal prayer right now. That the things my heart meditates on will be the truths in God’s Word and not overtaken by fear.
Please continue to pray health and discernment over our family. Thank you for being a listening ear as I process my thoughts, faith, and heart.
Christmas Day was delightfully uneventful for our family. I have been working hard to be present rather than focus on getting photos so I don’t have many from the day! But let’s take a moment to smile at this photo from Malachi’s first Christmas in 2013. For perspective, he was born in February of that year so he was 10 months old in this photo, but the size of a much smaller baby since he was born so prematurely.
For Levi’s big gift he got a home office to do all of his creating. I know this seems like a pretty lame gift for a 7 year old but he was thrilled. He loves spending time at his desk writing cards for people and using his imagination. It is so fun to watch him!
Malachi got a portable tv/tablet on a stand that keeps it right at his level for his big gift.
And for both of the boys we got a new video game system called the Nex Playground that doesn’t require holding a remote. Your hands are the remote and boy have we had some fun with that one.
Our Christmas was a simple one…just the way we like it. We’ve spent our weeks off knocking out some puzzles and playing some intense family games.
Malachi was able to get his casts off but they then modified them to be worn as braces for the next month. We didn’t let him pick out his shoes quite yet but as soon as we get the all clear he will get the chance to do some shopping.
Jake and I have been thrilled at how well his feet look! We have never seen them in these “normal” positions. He was born with vertical talus where they were folded up onto his shins, so seeing them rest at 90 degrees is beautiful.
Malachi did end up getting a head cold from Levi and we are now on day 9 of oxygen support. We took a trip to the pulmonologist last week to check for pneumonia and at that point we were holding strong. But here we are nearly a week later and I am afraid we might be headed in that direction. We have been keeping him home and running his respiratory regiments every four hours to keep his lungs clear and camping out in the living room so he can stay hooked up to all of his machines. We used to be able to share the couch together but now he is just too big and looking like a teenager!
Levi has thoroughly enjoyed all of our family time together at home and he is disappointed that he has to go back to school in the morning. He has kept us laughing with all of his antics and funny new phrases. On the way back from Vanderbilt threw his hand in the air and frantically asked, “Raise you hand if you are about to pee your pants!!” Prompting a very quick bathroom stop haha.
With Jake home for the break I was able to put in some hours at the farm. Life as a caregiver/mom can be really overwhelming at times. Escaping every now and then to put my mind on something else has been refreshing. I even had the newest baby sloth, Dash, join me for a bit.
As we get closer and closer to Malachi’s big spine surgeries I am having to face a lot of rising anxiety in me. It has ignited anticipatory grief, doubt, and so many memories and fears. Each time I can feel my heartbeat quicken and I have to remind myself that Malachi’s timeline has already been established and directed by God.
Jake and I had a goal in 2024 to read through the entire Bible, using the Bible Recap as our reading plan. We accomplished that goal, but some days I felt conviction over what felt like I was racing through the scriptures instead of taking time to really absorb them as the daily readings were sometimes whole books of the Bible, particularly the New Testament. This year we have chosen a goal of really reading and studying through the entire New Testament and the book of Psalms.
But reading through the Bible in that way really re-opened my love and appreciation for the Word of God. What a treasure the Bible is for us!
Earlier this week I read a post that I had written four years ago and it was exactly the reminder that I needed that morning, so I thought I would share that with you again here.
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Even though I walk through the valley of the shadow of death I will fear no evil.
This has been a shadow of death week. I know that sounds dramatic, but in our medically complex world it doesn’t take long for mild to become life threatening. Our special children don’t follow flow charts, textbooks, or “usually…” Each time we loaded up to go see the doctors again I caught myself wondering if this would be the last car ride, the last photo, the last time he would see Levi.
Malachi and I are so connected, and if I allow myself to fear as we walk through the valley of the shadow of death so will he. So instead we spend our hardest nights talking about heaven. Truthfully, it is one of his favorite things to talk about.
This week we had lots and lots of heaven talks. We talk about who will run faster in heaven, daddy or Malachi. We talk about how Malachi will have to teach Levi how to climb the trees there. We talk about the walks and talks he and I will have there and how I can’t wait to hear his version of his life here on earth. We talk about him wrestling his buddy Johnny, who made it there before Malachi. We talk about how beautiful the angels will sing and how exciting it will be to praise God forever with them. We practice the songs together that the Bible tells us the angels sing in Revelation.
I tell him about the beauty of heaven and how lucky he will be on the day that God tells him it is time to be with Him there.
I don’t want him to ever fear the shadow of death….so I too am learning to reach for the rod and staff for comfort as we walk through that valley together.
This week that valley led to a clearing. But one day that path will take a different turn. I don’t know if I can ever truly prepare my heart for that day, but I know I can prepare Malachi’s heart.
I can teach him that God’s timing is perfect. I can teach him that God loves him and he is one of God’s most treasured creations. I can teach him that God has ordered his steps already and has chosen the day He will call him heavenward. I can teach him about how God placed him on this earth for a reason. I teach him, and oh how he listens with such excitement- eager for the day he gets to see God the Father face to face.
May we all embrace our valley of the shadow of death as gracefully as Malachi…choosing to see the beauty that awaits instead of focusing on the evil along the way.
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2 Timothy 1:6-7 says “For this reason I remind you to kindle afresh the gift of God which is in you through the laying on of my hands. For God has not given us a spirit of timidity, but of power and love and discipline.”
This year I am working on the discipline part, the sometimes painful refinement that leads to a greater dependency on Him.
Please continue to pray over our family, particularly that Malachi can stay healthy and strong enough for his upcoming surgeries.
This blog post is coming from a hotel room in Nashville! Malachi gets his casts off today and we had some very sweet family members gift us a night in the Opryland hotel as an early Christmas gift so we could make an adventure out of the trip!
The boys are over the moon excited to be in a hotel for the night and to have a slumber party as a family. It’s a bonus to be in such a cool place with so many fun things to see. Last night we were able to walk through an ice exhibit with some pretty beautiful ice carvings.
They even had some fun slides made completely out of ice! Side note- these are some of the hard things we have to navigate as parents. They would not allow any double riders so that excluded Malachi from being able to participate. So we have the option to not do the activity at all or to still allow Levi to participate and risk hurting Malachi’s feelings. Finding that balance is hard so we often avoid situations where we have to make that decision. But we also think it is extremely important to give Levi these experiences. So usually if we let Levi do something we will make up for it later by giving Malachi a special experience.
Malachi’s big treat was getting to go on a boat ride inside the hotel! They were able to use a ramp and tie down his chair onto the boat. Watching him take it all in was just so sweet to watch. He is legally blind, but with the low lights and Christmas decorations he was able to really enjoy the experience. There were also waterfalls and fountains so his eyes were as wide as could be while we floated.
Malachi is very excited to get his casts off this afternoon and we have promised him that he can pick out a pair of shoes for the first time ever. We will have a month off from Vanderbilt trips and be back in early February for his pre-op appointment for spine surgery #1.
The last two weeks have been busy with all the festivities Christmas brings! The boys had a Christmas concert, which they totally rocked.
They were wise men in the church play.
And lots of fun Christmas parties!
They made Christmas cookies for their therapy horses.
And much to Malachi’s delight, he got to hold our sloth friend Zoey for the first time! She turned one last week and Malachi got the chance to snuggle her.
I am actually working part time for the farm now (mostly remotely) so we get to spend some extra time around the exotic animals, much to the boy’s delight! They just got a new baby sloth named Dash that is just too cute for words!
Malachi has been so happy over the last two weeks and seeing his joy will always be one of God’s greatest gifts to my momma heart.
This week we celebrate the birth of Jesus Christ.
Before I became a mother I don’t know that I truly appreciated what the day represented. But after 11 years of experiencing trial after trial I have come to cherish the hope and excitement that this day represents.
There is a familiar Christmas song that words it so well…
“A thrill of hope, the weary world rejoices for yonder breaks a new and glorious morn.”
I don’t know that anyone can better describe “weary” than a medical mom. There have been so many holidays where all I can do is sit bedside from my very sick and fragile child. I am not necessarily tired, but I am weary, living in a circumstance that I cannot change.
But it is because of a baby many, many years ago that I can experience a thrill of hope deep down in my heart.
It’s because of that baby and who that baby grew up to become that I know that one day my children will be fully healed.
It’s because of that baby that I know our pain serves a purpose. And that there is a greater plan at play.
It’s because of that baby that I am reminded that His ways are not my ways and His thoughts are not my thoughts.
It’s because of that baby that I see the providence of God…that He is ALWAYS at work…even in the hardest seasons of my life. And that His plan will always come to fruition.
Christmas is a reminder to me each year that God had a beautiful plan written long before it ever came to be. The circumstances that I am in were not a surprise to Him. They were written by Him and have the ability to draw an audience for Him to display His power.
I am reminded of John 9 when the disciples asked Jesus why a man they passed was born blind. Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the words of God might be displayed in him.” And Jesus then healed the man.
The works of God will be displayed through each of our trials; may we all pray for eyes to see those God ordained moments and timelines in our own lives and trust that God is working all things together for our good.
Please pray for health over our family. We are entering a high risk season of sickness and we need Malachi’s health to stay strong in preparation for February’s surgery.
And in our next post we will get to show off his new feet!
Holidays can be hard for medically complex families. I have talked about this before but it is easy to forget events, hospitalizations, and surgeries when there is an ambiguous date on them. But when they fall on a holiday the memories tend to become a little bit stickier.
Because of this, Jake and I are slow to develop traditions as we recognize that we won’t always be able to fulfill them. It “this is what we do every Christmas Day” exists and then we can’t fulfill it due to a surprise hospitalization it makes the hurt a bit bigger.
But one family tradition that we do our very best to fulfill each year is going to pick out a Christmas tree. The absolute joy that Malachi has when we pick out a tree makes it something I look forward to so much each year.
Malachi can’t see the trees but he can feel them, so we roll him around the farm and find a few that we like, naming them on their location or a distinguishing factor. The “car tree”, the “spiky tree”, the “fluffy tree”.
Well, this year Malachi voted for the “tall tree”. And getting it home was quite the hilarious task in the wheelchair van. He giggled the whole way home with excitement.
We then tackled trying to decorate the 11 foot 11 inch tree on a budget.
Malachi’s favorite thing to do right now is sit next to his tree and look at the lights.
Levi loves it too but doesn’t sit still long enough to appreciate it haha. He got a bag of hand-me-downs with a snazzy new sport coat and boy has he been rocking it.
Last week was a busy one with ten medical appointments between the four of us. One of those was seeing the boy’s GI doctor. We discussed trialing keeping Levi off of his feeds at night to see if he is ready to maintain his weight through extra food calories rather than relying on g-tube formulas to do so. Not getting his feed bag ready every night is bizarre to me and such a (nice) change in my routine. Not to mention the nighttime incidents where the extension comes loose and formula spills all over him, his bed, and his carpet. I am really hoping he can tolerate the formula wean well and this can be the new permanent thing. We will do a follow up weight check in 3 weeks to see how he is doing.
Unfortunately for Levi this week was blood draw week. We have never done well with blood draws so I tried the method of telling him the night before, leaning on the “knowledge is power” mindset.
He started out strong in the chair and I was feeling hopeful! Then we slowly lost our momentum and required some help from Child Life to calm down. But I am seeing some new maturity in him, specifically in his ability to self regulate.
Levi is still struggling with my grandmother’s passing and will still burst out in tears at random times thinking about her. Yesterday we talking about her and he asked “Mom, do you think she is watching us now?” And I said “No buddy, I think she is worshipping God!”
He thought hard about that and said “I’m not going to worship God when I get to heaven.” I asked him what he thought he would be doing and he said “I’m going to go talk to Malachi!”
The first thing he wants to do is have an actual conversation with his non-verbal brother. How incredibly special and heart warming.
Malachi is officially on the basketball team at school and is especially pumped about having a jersey! I am so thankful that we found a place for him to not only be included but also fully embraced and valued for the individual that he is. They have worked hard to learn his signs and he officially trusts them enough to open up and be himself around them. School is the highlight of each day!
Over the last few weeks I have felt fear creep back into my heart. It is a feeling I know well, like an old schoolyard bully, with some seasons bringing large waves of it back in. It creates such a panicked frenzy in me…a true storm.
As we walked through the tree farm last week I looked at Malachi and had this sudden thought, what if this is his last Christmas with us? And the fear and sadness overtook me in that moment.
Mark 4 :35-41
That day when evening came, he said to his disciples, “Let us go over to the other side.” Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, “Teacher, don’t you care if we drown?” He got up, rebuked the wind and said to the waves, “Quiet! Be still!”Then the wind died down and it was completely calm. He said to his disciples, “Why are you so afraid? Do you still have no faith?” They were terrified and asked each other, “Who is this? Even the wind and the waves obey him!”
I haven’t doubted the presence of Jesus in our situation. But in my moments of frenzy much like the disciples I want to shake him and yell “Don’t you care if we drown?” It’s so much easier to find someone to blame for our chaos rather than acknowledge that sometimes the chaos is needed to produce growth in our faith. How can our faith grow if it isn’t challenged and tested to reveal its weaknesses.
I have attached the calm in my life to mean the presence of God. And oftentimes in the calm I feel and hear him the most!
But I have to also keep reminding myself that He is there in the storms. He is aware of the storms. And he is not surprised at all by them.
Storms are opportunities for growth in my confidence in Christ.
I still have a lot of work to do in fully trusting the Lord. But I am praying for confidence to choose Him, even when I cannot feel the presence of peace.
About a week and a half ago I got a call from Malachi’s back surgeon at Vanderbilt. When I answered the phone and heard the voice of the surgeon himself I felt a cold chill run down my spine. All medical mommas know that a direct call from the surgeon is often a bad thing.
H explained that he looked over the CT scans with the chief surgeon and they decided that it wasn’t safe for Malachi to have the back surgery done as planned. They are now planning to do two different spine surgeries. The first one will be in late February and they will come in through the front to put plates and screws into the lumbar portion of his spine. They will need to move his lungs for this one prompting chest tubes and a longer hospital stay. The second spine surgery will be in early April and will be done through his back to fix the thoracic (middle/upper) part of his spine. He kept reiterating that this was the safest way to handle his anatomy.
Then last weekend we got another call from Vanderbilt asking if Malachi could come for surgery on both feet on Tuesday. Thankfully we were able to rearrange our schedule and say yes. The foot surgery is the mildest on the list and one we had originally planned to pair with one hip. But now that the back surgery timeline is going to scale the course of 4ish months we figured we needed to jump at the chance to get his feet in a comfortable position.
In the meantime between the phone call and foot surgery we had planned to celebrate Levi’s 7th birthday!
This was the first year that he was extra excited about it being his birthday. He got a special Chick-Fil-a lunch at school, a few fun presents, and dinner at the hibachi grill.
Let me just take a minute and show you Malachi’s face when they brought out the drums and sang happy birthday to Levi. He was so happy.
He also got the chance to sneak over to the farm and meet the newest babies (a fox, an alpaca, and a llama).
Then over the weekend he had some school friends over for a birthday swim party, and some church friends over the next night for a November night swim party.
Saturday evening after his party ended we got the very unexpected news that my grandmother had passed away. She was 93 years old and was recovering from something viral when she very suddenly passed away.
My grandma and I were very close and she loved my boys very much. We spoke over the phone often and we made trips to Ohio to visit her as frequently as we could, surprising her just last month with a visit.
Grandma had such a spunky spirit about her and was content with a very simple life. She was always thinking of others over herself and never wanted to be a bother to anyone else. There are so many stories, so many memories that I could share with you…but they all end with the same sentiment that Grandma was a very special woman.
We made plans to travel to Ohio for her funeral at the end of the week and had to put our focus, emotions, and energy into getting Malachi through his foot surgery.
Levi was upset by the news about grandma and very anxious about Malachi and I leaving. I am so thankful for our community of support that helped keep his day as normal as it could be. He rode to school with classmates and was treated with understanding and love, which brought peace to my momma heart. Malachi’s school friends all wore red to support him on his surgery day and made dozens of cards for him to read while he recovered. We are so blessed to have found such a supportive and loving place.
Malachi and I headed to the hospital early Tuesday and checked in for surgery around lunchtime. Malachi was excited about the one on one time with mom and had such sweet smiles the night before surgery. He knew he had to do hard things, but loved the idea of us snuggling in the hospital bed and watching movies. Hospital stays have been such treasured moments for us to connect.
Malachi’s lack of oxygen at birth severely damaged several parts of his brain (Hypoxic Ischemic Encephalopathy). One of the overflow diagnoses of that is Cerebral Palsy. Some kids with CP are floppy (HYPOtonia) and some kids are tight (HYPERtonia). Malachi is a mix of both. He can’t sit unsupported or hold up his head well (hypo) but his brain has told his muscles and tendons to pull his hips out of socket and dislocate other bones (hyper). His feet are a perfect example of his hypertonia.
Malachi had a tendon on the outside of each foot that pulled so tight it dislocated his foot bones. The surgeon cut the tendons then fused the bones back in place with permanent staples. This will hopefully be a forever fix for him.
He has some pretty amazing Spider-Man casts that will stay on until December 23rd.
Malachi spent nearly four hours in the operating room and we spent the night at Vanderbilt for pain management and some oxygen support. I truly think it was a God thing for this surgery to happen the way it did as they were able to see the level of support he needed for a “minor” surgery and have now made plans to reserve a spot in the ICU for each of his spine surgeries. The surgeon also noted how much Malachi bled through this surgery and they are going to make sure to have several bags of blood on hand for transfusions for the next few.
Malachi and I made the most of our stay. I am always so proud of how he handles such big challenges. He is truly amazing.
We were discharged Wednesday afternoon and left Thursday for Ohio. Recovery has been hard for him. He managed the pain well until about the third day. We had already made the trip to Ohio and had thankfully packed several “worst case scenario” things including his oxygen concentrator which he did end up needing.
We returned from Ohio last night and he smiled for the first time since surgery. We are working to wean him back off of oxygen and get him strong enough to return to his baseline.
We got to visit with family while we were in Ohio, even getting to see my other sweet grandmother. I keep telling the boys how blessed they are to get to meet two great-grandmothers in their life! Not many kids get to do that.
Grandma’s funeral was hard for all of us. It’s always hard to put a period on the end of the sentence of someone’s life. But it led to some really precious conversations with the boys about heaven and the providence of God.
As you can imagine, I have been all over the place with my emotions. Surgery day was hard. Anytime I have to hand my child over to the surgeons it creates such a turmoil in my soul. Getting to lay eyes on them in the PACU after surgery is all I can think about and until that moment I have such unrest brewing inside of me.
I felt like this round was a dress rehearsal for all of us for the hard things we have coming up.
I didn’t give myself room to grieve or process the loss of grandma until after we left the hopsital, wanting to be able to give my focus and energy to Malachi. The closer we got to Ohio the more real the loss became.
By the end of the weekend I find myself so incredibly weak and tired. I can’t tell you how many times this week I closed my eyes and just spoke to the Lord saying “God, I am just so tired.”
As we navigated the timeline to try to get north for the funeral amidst surgery recovery unknowns I was overwhelmed with a feeling of inadequacy. I feel like an inadequate mother, caregiver, wife, friend, Christian, daughter, granddaughter. I had to miss my grandpa’s funeral due to Malachi’s brain surgery in 2013.
I don’t get to pick the hats and order them. My medical momma hat always has to be worn on top of all the others. And sometimes the relationships I am in aren’t able to withstand the “bleeding” that can take place when my current and past traumas edge into their worlds.
Sometimes I get jealous of “normal”. I got upset that I couldn’t even grieve the way everyone else does. I want to be able to drop everything and be with my extended family. But I knew this week that I had to try to put it aside until after Malachi made it through his surgery, not wanting my emotions to impact his headspace leading to the OR.
As I sat in the surgery waiting area and prayed this verse from Psalms kept coming to my mind and mouth.
“The Lord is near to the brokenhearted and saves those who are crushed in spirit.” Psalms 34:18
As I thought about those words I grew increasingly thankful for them as they perfectly summarized my state of mind. I was (and am) crushed in spirit. I just feel so beaten down right now and feel the aches with every movement.
But even as I sit in these ashes I can feel the presence of the Lord close to me. He has pointed out all of the Jesus that my grandmother showed me over the years, cultivating the Fruit of the Spirit in my life by witnessing hers.
He has been reminding me that we aren’t called to leave legacies of ourselves here on this earth. We are simply called to point others to look past us and see Him. And my grandmother did that very well.
It has been a busy two weeks with lots of medical appointments and information. I am still processing a lot of it myself so I might not do an adequate job explaining things on here…especially the emotions we are cycling through.
The boys and I went to Vanderbilt last week for some pretty big conversations about Malachi’s spine, hips, feet, and legs. I knew we would have to have some hard conversations as we came physically see the skeletal changes the scoliosis is creating on his frame. His rib cage is no longer symmetrical, one set of ribs flaring out and sticking up dramatically higher than the other side. He is unable to lat flat on his back anymore and his body does some contorted things when we attempt to.
Last time we measure his spine curve he was at 45 degrees and we talked about surgically intervening when he was at 50 degrees. At last week’s appointment his curve measured 70 degrees which is obviously an urgent problem. Here is a side by side comparison with 2024 on the left and December 2023 on the right. He was positioned differently int he images but still…yikes!
They also took an x-ray of his hand to determine his “bone age” and he measured at 13 years old. This was a good thing as it shows he is a candidate for a spinal fusion instead of magnetic rods that grow with him. Malachi is scheduled for this surgery in February and is on the cancellation list in case they can get him in any sooner. It will be an all day surgery with three surgeons working to put screws and plates down his spine from his pelvis to T2. We will be in the hospital for several days after.
We talked to the foot/hip surgeon as well and he says Malachi is also in need of a foot surgery and surgery on both hips.
Malachi’s foot tendons are pulling so tightly that they are dislocating a joint in both feet, a cerebral palsy issue with the brain miscommunicating with the tendons and telling them to pull tighter. He needs to have both tendons released (cut) and the bone joint fused together. This will put him in double casts for 4-6 weeks.
He also needs hip surgery on both hips but due to the nature of the surgery and the inflammation he can’t do both at the same time. So he is considering doing both feet and one hip, then coming back at another time to do the opposite hip.
Malachi’s hips are both out of socket completely, which doesn’t always need surgical intervention. Unfortunately for him the head of the femur bones have migrated to the back of his bottom so he is essentially sitting on the bones, which will eventually lead to positioning problems and pressure sores.
Both surgeons met and decided the order of these surgeries based on urgency and quality of life and settled on back, feet, then hips.
All three are gnarly surgeries that are going to be so so so hard on our warrior. He will need time between each to get back to a baseline as he preps for the next one. It is going to be a very long year of back to back surgeries.
It ended up being a very long day for Malachi with lots of x-rays, CT scans, and hard conversations. I watched his face as we talked with doctors and could see the wheels turning in his head, soaking in every word. We finally got home just before midnight and Malachi and I had a chance to talk. I asked him if he was anxious and he immediately signed yes. I had to fight back my emotions as I explained that I was anxious too, but he was going to feel so much better after all this was done.
In all transparency, my heart hurts so much for Malachi. I can’t even imagine having to face one of those surgeries now, let alone as an 11 year old. He has had such a calm and beautiful few years without any major operations or emergencies so facing one again is a hard thing to accept.
My hope and prayer is that this surgery leads to a greater quality of life for Malachi and improves some of the new scary struggles he has been coping with over the last few months.
Malachi has been doing such a good job communicating lately. Yesterday he was angry and sultry most of the afternoon and it didn’t take long to figure out why.
A sweet friend invited me to do a walk with her to raise money for the American Heart Association. I presented the opportunity to both boys and let them each decide if they wanted to wake up early and do the walk with me or sleep in and hang out with Jake. Levi quickly voted to join me and Malachi quickly voted to sleep in and stay with Jake.
Walking a mile is hard on Levi’s airway so I brought his scooter. Being able to zoom on an actual road in downtown Chattanooga was a real treat.
When we got home Malachi was moody and his mood continued to sour as the night went on, clearly trying to get me to notice his annoyance with me.
Jake and Levi went to bed and I got the chance for a serious conversation with Malachi. I asked “Are you mad at me?” And he quickly signed yes. We talked for awhile and finally got to the bottom of it- he was upset that he didn’t go to the walk. I reminded him that he chose to stay home and tried to explain regret to him. After our heart to heart he gave me a big smile, seemingly grateful for “being heard”. It is conversations like these that warm my heart so much, watching him grow up right before my eyes.
Speaking of growing, the surgeon said Malachi is expected to be 4-6” taller immediately after surgery! Wild! I had to buy him some new winter clothes this week, which he was thrilled about. I may have to buy him a whole new wardrobe after surgery!
I also told him I would let him pick out a pair of shoes after his feet have healed post op. He has never been given the chance to pick out shoes as we haven’t found any compatible with his braces. The surgery will eliminate any need for foot braces! He gave mine a good smile when I told him that.
So for some fun updates.
Vanderbilt was giving away costumes the day we went for our visits so the boys each picked something out. We have had some good laughs at these.
Malachi has thoroughly enjoyed watching the NFL football games with dad, even sporting a hand me down jersey from his older cousin.
And Levi is becoming quite the animal enthusiast. Our farm friends just got some baby llamas this weekend and one other new baby (I won’t announce it until they do but it is a new animal species for the farm); we will be heading there this week for an introduction.
Levi turns 7 years old this week! Watching him transform from a medically fragile baby to a rambunctious seven year old has been such a joy. He enthusiasm each day is a wonder and his empathy for others is beautiful.
I am all emotioned out for the evening so I am going to save my Levi birthday post for the next blog entry. Momma can’t handle that one right now. What a journey these 7 years have been!
We started something new in our house this month called “My Virtuous Quest” and I am really loving the amount of conversations it has already created with the boys about virtues!! We are able to give names to behaviors if that makes sense. It’s helping me practice intentional parenting and look for things to affirm in my children.
Last week Levi’s g-tube popped in his sleep and he came in to tell me. He was very emotional about it, as he hates getting it changed out, but he stayed calm and collected enough to put a new one in so we gave him a “courage” badge. Side note- we have had to do 4 g-tube changes between both boys in 5 days…something fishy going on here with the quality of the tubes.
When they get 10 badges there are different family adventures hidden in the boxes. We also have different virtues that we can swap out and focus on based on the needs.
We are already hearing the “I was good today so I deserve a badge….” And it has been a good conversation starter about integrity and character is what we practice even when no one is looking and no reward is given. We are also working to find the conversation balance between the things that are virtues and the fruit of the Spirit.
If you need a fun gift idea for Christmas and have little ones this would be a great one!
Look at the smile on Malachi’s face with his school buddies! The friendships he is forming are so special! I am so thankful for the opportunity they are giving him to be involved this year.
It has been 11 days since our Vanderbilt trip and to be completely honest, I am still very numb. I haven’t has the chance to really accept all that I heard and think about the seriousness of what we have to face.
Spine surgery has always been an overwhelming fear of mine as we personally know children who underwent this surgery and passed away in the operating room. But I also recognize that we don’t have a choice. If we wait much longer Malachi’s lungs will start to be impacted by the spine pressure and breathing will be a struggle. I can’t imagine the fear that will stir in him, so really there is an eagerness to spare him from that and get this surgery over with.
This upcoming surgery has become a mental fixation, consuming my thoughts and energy. It is taking such conscious effort to take every through captive and make it obedient to Christ (2 Corinthians 10:5). And it is something I find myself failing at often.
When I have started to spiral into that dark place the Lord has been very gracious to me, putting the same verse in my heart as a much needed reminder.
“Come to me all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.” Matthew 11:28-30
We are facing many unknowns right now and igniting memories of times when I felt as helpless as I do now. Being a helpless mother is a hard calling to accept.
Please be in prayer for our family as we navigate some hard things over the next several months. Pray for God’s timing and will in each scenario and for Malachi to have a peace from the Lord.
