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.
Malachi went back to the operating room today around lunchtime. We spent most of the morning before they took him back snuggling in the bed and singing songs. Malachi smiled for the first time since surgery and was back to his bubbly self. Had we not had a screw slip out of the spine we would have been discharged today and I was 100% confident in them sending us on our way.
Malachi’s surgery went faster than Monday’s as they were able to enter a portion of the same incision that had not healed yet. They retrieved the broken screw successfully and shortened the rod before stitching him back up.
Then they put Malachi in his u-shaped halo by surgically screwing 6 pins into his skull, two on his forehead and two above each ear. I underestimated the size of the pins and when I saw him post op it took my breath away. Seeing his perfect little face with such large bolts drilled right through it made my stomach come up into my throat.
I was absolutely overcome with emotions, feeling the suffering of my son in such a big wave. As I leaned forward to look at these pins the Lord spoke to me and declared “He (Christ) was pierced for our transgressions, He was crushed by our iniquities”. WOW!! What a powerful image for me, making the cost of the cross so monumental and tangible to me. Seeing the suffering of my son, pierced with these pins is such a minor infliction compared to Christ’s death on the cross. Oh how He loves us!!!
Isaiah 53:3-5 “He was despised and rejected by mankind, a man of suffering, and familiar with pain. Like one from whom people hide their faces he was despised, and we held him in low esteem. Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.”
Let me reassure you, I am not comparing my son to Christ, nor am I comparing their suffering. But by seeing the minuscule suffering of someone that I love with all of my heart I was able to feel the effects of Christ’s sacrifice a little bit deeper than before.
That parallel then took me to the heart of Mary, sitting sideline and watching her son’s own suffering and death. Today I have had the heart of Mary at Golgotha, struggling to understand the weight of the suffering I am witnessing. Struggling to understand the why. Wanting desperately to take his place, to declare his innocence, but those pleas falling on deaf ears.
I have cried so much today. I am sad for Malachi and this new loss of normal. I am not ready to share photos of him quite yet, as I wouldn’t want someone sharing similar photos of me directly after such a big surgery. But I can use my words to explain what his new normal is.
The horseshoe metal ring that is pinned into his skull has an upside down “V” on top, and at the top of that is a carabiner. Built up over his bed is a system of metal rods and pulleys, which are hooked to that carabiner. Weights are added to the other end of the rope, essentially hanging him by his skull from a rod above his bed.
Yes, it looks as horrific as it sounds. And I can’t imagine how Malachi must feel right now. He is very sleepy from surgery so we are keeping him medicated and comfortable, but I am having a hard time picturing how this is going to go for the next several weeks, particularly with his mental health.
Jake and Levi are making plans to travel on weekends to spend time with us. But this is very contingent on their health as Malachi simply cannot get sick. That would be devastating to his system and we are trying to keep him stable enough to go back into surgery in a few weeks. In the meantime we are FaceTiming and talking often. Levi even lost his other front tooth today!
A HUGE thank you to so many of you who sent over gifts for our family. I don’t know that words can do justice for the blessing of that load lifting off our shoulders. Last night I was able to take deep breaths, knowing that our plans don’t have to revolve around having the finances for hotels and gas. It physically felt like a burden had been lifted and felt like a hug from God Himself. And being able to offer fresh movies to Malachi last night blessed his little heart and brought him such joy.
I am going to leave you with another C.S. Lewis quote today, as reading his books has been excellent at making my mind focus on other things.
“When I lay these questions before God I get no answer. But a rather special sort of ‘No answer’. It is not the locked door. It is more like a silent, certainly not uncompassionate, gaze. As though He shook His head not in refusal but waiving the question. Like, ‘Peace, child; you don’t understand.’” -A Grief Observed
Prayer needs tonight are pretty easy for me to list. Malachi’s physical comfort and pain level, and specifically his mental health. Levi’s tender heart and medical PTSD that is at play through this hospitalization. Jake’s strength and energy to continue normalcy with Levi but also absorb the responsibilities that I had to lay on his lap, specifically our soccer ministry.
And selfishly please pray for me. I am feeling like I failed Malachi in not exploring all routes before starting this process. I feel like we are in a reactive place, not having anticipated these setbacks in the way we should have. Should I have pushed for this surgery sooner? Should I have forgone the initial fusion and jumped straight to the process we are doing now with halo traction? I feel like a bystander in the planning and implementation of this plan we are on, which is not like me. It makes me feel like I was lazy in my advocacy efforts for Malachi and it is planting seeds of bitterness in me. Bitterness towards myself and bitterness for some of his providers, which isn’t healthy.
Our family is very much at war right now and the daily expectations of each of us right now are getting overwhelming. Please pray for our stamina and that we can continue to stand in the gap for one another.
Thank you for loving my boy the way that you do and taking the time to check in on him. He is the bravest kid I know. I am so proud of him and the grace he gives to others, even in his times of suffering.
Malachi will go back into surgery (#22 for him and #53ish between both boys; I keep losing count!) tomorrow when they can squeeze him into the schedule to 1) retrieve the broken screw 2) to cut off the piece of the rod that was being held down by the screw and 3) to surgically pin a metal halo into Malachi’s skull.
For the next several weeks we will be living in the hospital as he undergoes halo traction. Halo-gravity traction is a way to pull the head and spine upward carefully, applying a slow stretch to the spine. The halo will attach to a pulley system and over several weeks, weights are added to the pulley system to slowly pull the head upward.
As you can imagine, this is an overwhelming plan for us to process as a family. And the amount of pain Malachi has to go through is emotionally breathtaking. Malachi’s suffering is the primary overwhelming thing for us right now. Then there are the peripheral things (that are still very big things), like Levi and how he will handle this distance and change in life.
After a few weeks in halo traction Malachi will go straight into surgery to have a full spinal fusion done. They are worried that without halo traction that the screws that are still remaining in his spine will also be pulled out. Our hope is to do the next big surgery mid to late March based on how much we can get his spine and skin to stretch with traction.
We are still processing what this will look like for our family. The most common thing we keep hearing is “aside from prayers, how can we help?” And up until now we have been managing well! But with this new course there will definitely be needs that arise…gas for Jake and Levi’s trips to visit, hotel rooms, meals for Leah in the hospital, etc. Right now the only thing that Malachi keeps asking for is new movies, so we have been renting several on Amazon to keep him entertained and happy. When I have time to breathe I will work out a list of our needs and be ready to answer that question when people ask if you feel led to come alongside of us in this new trial. We have always felt so cringey about accepting help from others, but that is entirely due to pride that we need to simply lay down. We are NOT soliciting funds but if you would like to fill any of these needs our Venmo is @leah-carroll-30.
I had a big ol’ cry this evening as I felt such big emotions for Malachi. How do you explain all of this to a 12 year old that has already lived such a hard life….who has already had such a hard WEEK? How do you begin to make sense of it. I would lay down my life for him in a heartbeat, but there is nothing I can do to take this cross from him.
Tonight my mind immediately went to a story in the Old Testament about Hagar and Ishmael. Abraham had turned her out of his house and into the wilderness.
Genesis 21:15-20 “She went on her way and wandered in the Desert of Beersheba. When the water in the skin was gone, she put the boy under one of the bushes. Then she went off and sat down about a bowshot away, for she thought, “I cannot watch the boy die.” And as she sat there, she began to sob. God heard the boy crying, and the angel of God called to Hagar from heaven and said to her, “What is the matter, Hagar? Do not be afraid; God has heard the boy crying as he lies there. Lift the boy up and take him by the hand, for I will make him into a great nation.” Then God opened her eyes and she saw a well of water. So she went and filled the skin with water and gave the boy a drink.God was with the boy as he grew up.”
Oh how my heart matches Hagar’s this evening as she laid her child under the bushes and stepped away, her heart breaking as she watched his suffering.
But God heard the boy crying.
And I know God has heard my cries this evening. And he has heard the inner thoughts of my non-verbal son.
And I am confident that God will open up our eyes soon and allow us to find our well of water.
Because He is good. Even when life isn’t.
I was reading Corrie Ten Boom last night as she wrote about her visit to a men’s prison. She writes, “Lord, how can I speak about joy when they live in this terrible place?”
She goes on to say: “His answer was, My Holy Spirit is here. Joy is a fruit of My Spirit, and it is available wherever I am.”
Please pray that we are filled with the joy of the Lord again and can walk in His confidence. And keep Malachi in your prayers tomorrow as he undergoes another surgery and we enter a new world.
This morning I sat down and had a beautiful and awesome update typed up and ready to post; we were even on track to be discharged Thursday morning! But this afternoon we went for x-rays and received the frustrating news that Malachi’s bottom screw has already popped out of his spine and is now in a muscle. We will have to go in and surgically remove it through his incision from yesterday (no surgery date set and is separate from the round 2 surgery). And then we are essentially back to square one.
His spine and skin cannot handle the round 2 fusion surgery he is scheduled to have in April. And since our Plan A hasn’t worked we now have to consider another approach. Our surgeon is consulting with colleagues this evening and speaking with plastic surgery to consider all alternatives and will present his plan of action to us tomorrow.
At this point it looks like halo traction may be in our future, which means living in the hospital for several more weeks.
I am discouraged. But we will figure it all out and life will go on. I just need to mope around for a few hours.
Here is the update I typed up before we discovered the complications…
Malachi took his time getting out of PACU and up into a room last night, finally getting settled very late last night. His pain is being managed well, he is very stable, and he is mentally clear!
Since 5am we have had at least 50 people floating in and out of his room from all the different teams on board….general surgeon, respiratory therapists, pulmonology, orthopedics, pediatric pain management team, x-ray techs, and all kinds of nurses and students. The door is opening nearly every 5 minutes right now.
This afternoon physical therapy came by along with someone from the wheelchair company and adjusted his chair for his new body positioning. He is expected to be several inches taller when we are finished fixing his spine!
We were able to get him in his wheelchair for a little bed break and went on a field trip to get x-rays. Malachi enjoyed the adventure.
Malachi got his chest tube out. He had some blood in his lungs from surgery but it is starting to slow down and his X-rays are continuing to improve. The biggest risk right now is still a secondary infection popping up so they are still drawing labs regularly to watch his numbers. He started to get a bit pale this morning so we are monitoring it closely and talking about blood transfusions if it doesn’t improve by morning.
We are realizing that the way this surgery was done was actually pretty uniquely. Usually all fusions are done from the back and not the anterior side (well, his was more of a lateral cut from the hip line up to the rib cage). But they were able to get some substantial hardware in there from those angles that they couldn’t have successfully done from the back.
This is the best before and after visual I can get for you right now and was taken from the side. Absolutely fascinating. He will get more hardware in the lumbar region when he is fused in April but the goal this week was straightening his pelvis.
Malachi is still on oxygen but we expected that and are focused on keeping him safe and comfortable so no rush on that one! He is getting some fluid in his g-tube with plans to start watered down formula back tomorrow.
Please be in prayer for my head space. Malachi was doing SO great and having the plans so drastically change and adding in another surgery (potentially this week) is so sad. My heart hurts for him.
And a short Levi update. He is doing well right now and staying busy and distracted!
Yesterday while I sat in the surgery waiting area I was able to read a few new books I had purchased just for this occasion. The first one I read cover to cover, titled “A Grief Observed” by C.S. Lewis and as I leaf back through the pages today and look over the things that I felt like warranted an underline I can’t help but reflect on the words I read and laugh about how I needed the reminders today.
“But supposed what you are against is a surgeon whose intentions are wholly good. The kinder and more conscientious he is, the more inexorably he will go on cutting. If he yielded to your entreaties, if he stopped before the operation was complete, all the pain up to that point would have been useless. But is it credible that such extremities of torture should be necessary for us? Well, take your choice. The tortures occur. If they are unnecessary, then there is no God or a bad one. If there is a good God, then these tortures are necessary. For no even moderately good Being could possibly inflict or permit them if they weren’t.”
And in the other book I started, “The Problem of Pain” also by C.S. Lewis I read this quote:
“Lay down this book and reflect for five minutes on the fact that all the great religions were first preached, and long preached, in a world without chloroform.”
My faith doesn’t depend of the outcome or the setbacks. It is rooted in truth. But every now and then I need an Elijah moment where I can lay down next to the brook in self pity and take a good nap.
So here is to an Elijah night. Keeping it honest and real over here in Nashville haha!
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.
