We made it through another sickness y’all! I am overjoyed at the way their immune systems have been handling germs. Don’t get me wrong- those days of sickness are things nightmares are made of, but we have been able to stay away from the hospital and are so thankful. We had lots and lots of baths this week as we dealt with drainage induced vomiting.

Our Christmas was a casual and relaxed one with us all staying in PJs most of the day. Malachi and Levi got to open a few presents each- Malachi’s favorite was a switch adapted alligator and Levi’s was a Solo cup that we wrapped up.

Just look at that smile!

We went over to the church that evening and set up an obstacle course for Malachi to drive his Wild Raptor through. Jake and I are insanely competitive so we took turns driving him through the course seeing who could do it the fastest. Malachi loved every minute of it!

Here is a sweet video of Malachi’s joy on Christmas morning:

I know it seems silly, but one of the highlights of the week for me was actually being able to cook meals. On typical weeks we are so go go go with appointments that spending an hour prepping a meal is just not logistically possible. It felt good to cook again!

On Wednesday everyone was feeling well enough for us to go on a little adventure. Malachi loves to go bowling and thinks it is fun to push the ball down the metal ball ramp so we headed to the alley for a quick game. He is still working on the concept of taking turns and signed “more” every time it was Jake or I’s turn to bowl. And Levi was a supportive cheerleader for us all, squealing with joy each time we walked back towards him.

We had some family come down from Ohio for a quick visit at the end of the week!

Then came Friday. Oh Friday. We usually do a lock-in for our youth group on New Year’s Eve and this year I decided to shake things up a bit by renting the trampoline jump park in Chattanooga. Jake and I rock, paper, scissored to see who would have Carroll kid duty (Jake) and who would have church kid duty (Leah). We ended up with 75 teenagers and it was a wonderful time, but nothing will wipe out your energy faster than a lock in! I am still trying to catch up on some much needed sleep before Jake has to go back to work this week.

We have brought Malachi’s CBD dose almost to where the epileptologist wants it to be. He is still very lethargic as he adjusts to the increases but it is most definitely helping his seizures as well as his sleep. He is only having about 2 seizures a day and they are very slight. I am curious to see if the full dose will completely eliminate those.

We are back into medical land this week but thoroughly enjoyed the nice break the holidays brought us. Tomorrow we will see the physical therapist for both boys and then head down to Chattanooga to see Levi’s pulmonologist. Malachi has to be back at Vanderbilt on Wednesday so we have decided that all four of us will make the drive this time. We are planning to go up the night before so we can take Malachi to a restaurant called “Aquarium”. It is a restaurant that is completely surrounded by giant fish tanks and has very low light for Malachi. We usually take him to the Rainforest Cafe but we don’t think Levi can handle that one at this age haha.

I had the opportunity to do a devotion with each of the age groups represented at the lock in and thought I might share those thoughts with you all too!

There is a story that many of you probably remember from Sunday School about Jesus washing the disciples feet. It is found in John 13 and is a beautiful reminder that Christ did not come to be served but rather came to serve. But there is more meat to the story than just that wonderful lesson.

^{3 “}Jesus knew that the Father had put all things under his power, and that he had come from God and was returning to God; ⁴ so he got up from the meal, took off his outer clothing, and wrapped a towel around his waist. ⁵ After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him.

⁶ He came to Simon Peter, who said to him, “Lord, are you going to wash my feet?”

⁷ Jesus replied, “You do not realize now what I am doing, but later you will understand.”

⁸ “No,” said Peter, “you shall never wash my feet.”

Jesus answered, “Unless I wash you, you have no part with me.”

⁹ “Then, Lord,” Simon Peter replied, “not just my feet but my hands and my head as well!”

¹⁰ Jesus answered, “Those who have had a bath need only to wash their feet; their whole body is clean. And you are clean, though not every one of you.” 

This scene takes place the night before Jesus was crucified and they were at the Last Supper. The disciples didn’t know that this would be the last night they would spend with Jesus in his pre-resurrected body. I can just feel the awkward tension in the room as they witnessed this man, the promised Messiah, bend down and wash their feet. What a humbling moment that must have been. 

Then the silence is broken by Peter. The conversation that Jesus has with Peter is such a rich one and took me reading the verses several times before I truly felt I had grasped its meaning. 

“Unless I wash you, you have no part with me.”

When Peter hears Jesus say this his reply seems dramatic as he tells Jesus to wash all of him, desperately wanting to be connected to Jesus! But it is Jesus’ reply that really made my mind go into overtime:

¹⁰ Jesus answered, “Those who have had a bath need only to wash their feet; their whole body is clean.” 

Process that sentence for a minute. What does it mean?

Who are “those who have had a bath”? That represents people who have a personal relationship with God. When you ask Christ into your heart you are washed by the blood of the lamb and are made white as snow. In Isaiah we read: 

“Though your sins are like scarlet,
They shall be as white as snow;
Though they are red like crimson,
They shall be as wool.”

Salvation washes us, but because of our sinful nature we continue to get dirt on our feet. We trudge through things we shouldn’t, each step coating us with things that are not of God. 

That night Jesus was trying to teach His disciples that even though they have been washed they must make a concerted effort to remember to wash their feet- not just once but over and over and over again. We continually need to recognize the dirt that we pick up on our walk through life and spend time with Christ, allowing him to wash it from us. We need to acknowledge our sin and the marks it is leaving on us and repent, asking him to remove those struggles from us. 

So many times I hear comments that cite the phrase “those ‘perfect’ Christians”, when in reality we are just as flawed as the ones that don’t know Christ. We all have dirty feet. But what separates us is the ability to recognize the filth in our lives through the power of the Holy Spirit and the desire to be made clean, knowing that the dirt is hindering and distracting us from our relationship with God. 

When was the last time you asked Christ to wash your feet? When was the last time you went to Him, acknowledging your need and desire to be washed and made white as snow yet again? 

If you get time and need a great devotional I want to encourage you to read John 13! It is getting late and my brain is getting fuzzy but there are more thought provoking things in that chapter.

Please pray for traveling mercies for our family this week as we head to Nashville. Please also pray for our transition as a family as Jake heads back to work. It is always such a nice break to have him home with us all day every day and going back to solo days with the boys is always a challenge for me. 

2018 was a year of challenges for our little family, but it was also rich with blessings from God. We are praying that 2019 is a year of miracles and healings for both of our boys.

Much love,

Leah 

Let’s start with the highlight of our week: Malachi’s new Wild Raptor:

On Monday morning Malachi met with the robotics and mechatronics team that adapted and designed his special Christmas gift. They truly went above and beyond what we expected, not only making it remotely controlled but also adding a speaker, lights all around the bottom, and a dinosaur theme with a working dino head that he can work with his foot to roar. They put so much effort and time into making it perfect for him!

After the last sensory overload experience I decided to tell Malachi as many details as possible so he wouldn’t get overwhelmed. We watched videos of other “Wild Thing” cars so he could get used to the noise and made it the topic of conversation as much as possible.

When we got there and I asked him if he wanted to ride in it he let out a ROAR and was definitely excited to try it out. He made it a minute or two on his test drives and the overload was too much and he started to get emotional. But even though he was crying he was signing for “more”. It was like he really wanted to ride it but his body wasn’t agreeing.

We took it to the church later that afternoon and gave him is recordable switch programming one button to say “Stop Please” and the other button to say “More Wild Raptor Please”. He felt a sense of control and after 5 minutes we took away the switch and he was totally fine, giggling like a wild man.

Here is a video for you:

He LOVES it! He wants to ride it every day, which we will definitely be able to do when it warms up. But for now we have to stick to sneaking over to the church gym when it is not in use to get some hours logged.

The local news covered the story and did a great job! I have posted the video on my Facebook page if you would like to check it out.

Our week to a turn towards chaos on Wednesday when both of the boys woke up coughing. My heart sank when I heard Malachi hack, then again when Levi woke up doing the same thing. As you already know, sickness is tough on both of our warriors and the constant lingering fear of a hospital stay is always present. We tucked ourselves into the house for the rest of the week which has it’s pros and cons.

One of the biggest pros was that we got to justify canceling all of our appointments for the second half of the week, including Levi’s hospital stay for a sleep study on Thursday. Ahhh shux (hope you read that sarcastically). And “unfortunately” they are booked until March so we will have to wait another three months to try again. Oops. 😉

But the cons nearly outweigh the pros as colds lead to sleepless nights and lots of vomiting for both boys, as they both don’t know what else to do with congestion but vomit it out. Levi is throwing up about 18 times a day right now and that is much better than the last few days. Really being home is the only option- we need to have access to mops, changes of clothes, and the bath tub.

We are on day 5 and still not out of the woods yet. We are keeping a close watch on their temps; that is typically the first indication of a secondary infection like pneumonia so please keep them in your prayers.

We were able to cram in some busy days on Monday and Tuesday before the sickness hit with several appointments. Malachi also got fitted for his new AFO (leg braces)- we went with Superman themed ones this go around. We will head back to Vanderbilt on January 2nd to see the surgeon for a follow up and we are hoping he will be cleared to take the casts off and go into braces full time.

Levi never lets me mess with his mouth but I happened to be able to snap a pic this week of two of his four teeth. He was mad at me because I made him try some blackberry jelly.

Christmas…oh Christmas. Jake and I were laughing a few minutes ago reminiscing about the last few years and the adventures Christmas day has held. Last year we were in a hotel room in Cincinnati trying to stay close to Levi in the NICU. It is incredible to me the details I remember from that day. I hope that time will fade those for me. But the highlight of that day was getting a call from the Ronald McDonald House saying they had an opening. It would become our home for the next 4 months.

The year before that we had sold our home with the dream of building Malachi a handicap accessible one. We were vagabonds for the time being until our rental opened up, living with relatives for a few weeks in Ohio then living in an RV “down by the river” literally. We laughed at the comedy in that little RV, trying to make life with a boy in a wheelchair work in there.

Needless to say, we are thrilled and aware of how blessed we are to spend this Christmas at home together. I almost hesitate typing that as we continue to fight sickness, but maybe proclaiming a stress free Christmas will make it so.

Here are a few more pics from last week’s debut as horse and donkey in the church nativity:

Spiritually speaking, I have been alllllllll over the Bible this week. Jake is off through the holidays and when that happens we are each able to carve out some solid devotional time. I study my Bible every week when I am preparing lessons for the youth and children, but devotional time “for me” is also so important and necessary and something I often don’t get enough of.

This week the verse that is playing on repeat is Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” I think I have talked about this one recently, but this week it has been pressing on my heart in so many ways.

This sentence comes out of the mouth of Joseph, who had endured some horrible life experiences leading up to this moment. His testimony is a beautiful one that has always been an encouragement to me when I am feeling betrayed, alone, forgotten…it hits so many emotions that I can relate with! If you want a devotional to dig into, the Joseph story is always a good one; it starts in Genesis 37. If you aren’t a big Bible reader the book “Detours” by Tony Evans is a thought provoking study we just completed in our Sunday School class.

But there is something in here that my mind keeps drawing to.

“You intended to harm me…” We live in a fallen and ugly world. While our mouths speak love and compassion our hearts and minds often do very different things.

I have been thinking a lot this week about the past. About all the times I can look back at and see intentional efforts to harm me…my reputation, my self confidence, my walk with the Lord, my relationships with others. My past, as I am sure yours may be as well, is littered with people who have tried to make me feel “less than”.

When I look back at those early years I see that they had success at making me believe that lie. But when those intentional attacks hit me these days my take on it is so different…

“…but God intended it for good.” When I look back at those past hurts I see how beautifully God orchestrated them into blessings. And through them my walk with God grew stronger and more concrete as I watched His providence reign again and again.

Now when those intentional harms come at me I don’t panic like I used to as I know that God can take even the ugly and create something beautiful from it.

I don’t know who might be the focus of  your “You intended to harm me…” moment. It might be a family member, it might be a coworker, it might be a friend, it might be a stranger. But choose that believe that through that attack God will intend it for good. Give it over to Him and allow Him to create a masterpiece. God can re-direct ANYTHING to glorify Him. Do you trust Him to do that?

Please continue to pray for my boys this week, that we breeze through the rest of this sickness without complications.

We pray that your Christmas is full of God moments and reminders of how much He loves you.

Merry Christmas friends,

Leah

The boys had a special visitor come by the office this week and they got a chance to say hello.

Levi is very stranger=danger these days so it went about as we expected.

This is the interesting part…Jake and I have decided not to do the whole Santa Claus concept with our kids. We are not against anyone that does, we just choose not to for personal reasons. But when Malachi saw Santa on Monday he got SO excited and his face showed recognition for his name, which completely surprised me. The only context he has for Santa is them talking about him on the cartoons he watches. It was just more affirmation to me that he is a smart little boy.

Most of our specialist doctors see the boys on either a 3 month or 6 month rotation. Between the two boys we see more than 18 specialists. We cram as many into June as possible but that means we end up with a whole lot of December appointments! I think if I wrote out our week hour by hour you all would be fascinated at the amount of things we cram into every 24 hours.

Here are some highlights:

Monday we headed to the hospital to change out Malachi’s feeding tube. It was a long 6 weeks with the original tube which had an insanely long extension dangling out of it at all times. It always got caught on things and nearly pulled the whole mechanism out of his tummy multiple times. We successfully switched over to a mickey button which is about the size of a nickel and stays out of the way. Lifting him up for the first time after the switch was so freeing, as I didn’t have to make a plan for the dangling tube before moving him. Malachi has handled the switch well. We have not used the tube a single time since the switch but at least it is there as a plan B in case he gets sick.

Tuesday we headed back to the hospital for Levi’s appointments. We started with his synagis shot from pulmonology then headed over to neurology. It was a very long appointment, but for specialists like these you want them to be thorough. He examined Levi and we talked about what milestones he has hit as well as which ones he has not. The neurologist is extremely honest which is something we have always liked about him. He said that he is pretty confident that Levi’s brain damage is more extensive than we realize. He was very eager to do another MRI, but I have never been a fan of doing imaging unless it will change our course of treatment. I don’t like doing things to the kids for curiosities sake. I did agree to do one after Levi turns two so we scheduled that for next December.

We also talked with both the neurologist and the epileptologist about Malachi’s new med and how he is reacting to it. We found out that Malachi is the first and only patient in Chattanooga (well, from the children’s hospital) that has started the medication so they are very curious to see what happens with his seizures. Malachi is still having a hard time adjusting to the tiny dose we started him on and is very lethargic and sleepy. I asked if we could postpone the increase and they were okay with postponing another week. He has had a slight decrease in his seizures and the ones he is having are much less aggressive, so that is good.

Friday we headed back to Chattanooga but this time for something fun! Every year a local organization adapts lots and lots of toys to work with switches like Malachi’s. They have a big giveaway and let anyone in the community come and pick out a toy to take home. Malachi had to miss it last year because we were in the hospital in Cincinnati with Levi. But the year before I remember how much fun he had trying out all the toys and choosing his favorites. Here were some photos from that year (2016):

Look at that chunky monkey!

I talked to Malachi all week about going to pick out a toy and he would always sign YES, ready to go then and there. It was pouring down rain on Friday and making the two hour round trip drive for a toy sounded awful but I had made him a promise so off we went. We got there and started trying out the toys and then the chipmunk happened. One of the toys was a tiny little chipmunk and when you pushed the switch he danced and sang in a chipmunk voice, but was very loud. Malachi did not see that one coming and it absolutely terrified him. He started crying and signing NO so I turned it off as quickly as possible.

That was it…Malachi was done with our toy adventure. He just couldn’t recover from the scary chipmunk and kept signing NO NO NO. I would show him a toy and say “Would you like the tiger?” and he would sign NO. When I asked him if he wanted to go home he very adamantly signed YES YES YES with a frown on his face. I picked out the toys I thought he might like and we headed back toward home.

In between all these appointments and adventures I have to find time to make sure both boys are fed and happy. A lot of times that means we find a hospital corner or a parking lot somewhere and I get Malachi out and sit in the passengers seat with him to feed him. As I sat there with Malachi I started to get so angry. Not at Malachi, not at myself, but just at this crazy life. My motives for the day were pure…yet the outcome wasn’t what I had hoped it would be. Those unmet expectations get me every time.

The kids semi-successfully had their big debut performance in the church play this evening. Levi was a whiny donkey, crying often but not completely losing it. Malachi did great as a horse and was convinced that the clapping from the audience was for him and him only. He kept leaning his head forward, trying to get a glimpse at the audience. It was really nice to see them be included in the performance. I will try to get some better photos for you for next week but here are a few:

Tomorrow morning we will be meeting with the high school class that adapted Malachi’s “Wild Raptor”. I am SO EXCITED to see his reaction! They facetimed me this week so I could decide if it was safe enough (it is VERY fast and the remote is sensitive) and I couldn’t help but laugh afterwards thinking about how much it was going to blow his mind. I can’t wait to share the video with you next week!

I have felt like that Bop-It game this week, with things coming at me from all angles bopping, twisting, and pulling me into different emotional directions. There have been so many beautiful moments, friends stopping by with gifts for the kids, kind strangers buying our dinner, moments of uncontrollable laughter. There have been moments of isolation, frustration, hopelessness, and defeat. This has been one of those weeks where I have had to focus really hard on choosing to be joyful.

I have had two verses on auto play running through my head all week…

Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking at your own interests but each of you to the interests of others.”

I have really been trying to evaluate my selfish tendencies. We all have them…those moments when it is easier and just plain nice to put ourselves before others. But by professing to be a child of God I am professing to do things differently than the world does them. And fighting our nature towards selfishness if one way to try to do that.

When I am racing towards the door trying to beat another person in so I can be first in line…then this verse played in my mind… “Do nothing out of selfish ambition- value others above yourselves”. So instead of continuing on my well earned path at being first in line, I decided instead to hold the door to allow them to walk through it first. Oh boy, did that one stress me out. But we are called to those moments of self-denial so we truthfully should be seeking opportunities like these.

Time out for a minute: that last paragraph sure sounds like a brag moment, which I hope you understand it most definitely is not. I am actually ashamed that my nature doesn’t do these things automatically and I have to think so hard about them to make them happen in my life. It is a true challenge for me.

The second verse is Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.” Each chunk of this verse could be a devotional all on its own! But as I have recited this in my head hundreds of times this week I can’t help but look at the transitional nature of this verse.

The word hope has been floating through my heart this week as I process what it looks like in my family. Hope is one of those emotions that is very hard to describe. The last time I felt full of hope was almost exactly one year ago as I flew Levi from Chattanooga to Cincinnati for his experimental procedures.

The interesting thing about hope is that it literally grows within you. You can almost feel it growing larger and larger, leaving you with an airy excitement as you think of all the potential things that the hope could bring. Like the verse mentions, it brings with it the feeling of pure joy.

But what if someone or something pops that bubble. That same night that I was filled with an enormous amount of joyful hope things took a turn for the worst. I scooted myself to stage two of that verse into the “Patient in affliction” category. I wrote a Facebook update this week talking about the night we arrived in Cincinnati. This may be a repeat to some of you who have seen it so feel free to scroll past it until you reach the black line. I copied it to share with anyone who is not on Facebook:

One year ago I boarded an air ambulance with my 4 pound son, wild eyed with hope that we would find a solution for his bilateral vocal cord paralysis that didn’t involve a trach. I have never shared the details from that night but as I lay here awake I feel like I need to. I struggle very much with PTSD from Malachi’s journey but even more with Levi’s and my heart has ached the closer we have drawn to this date.

Levi was extremely stable when we left Chattanooga, where he was comfortably kept on 4 liters of oxygen. He needed the high flow of those liters to help the oxygen get past his unmoving vocal cords. Insurance wouldn’t approve Cincinnati’s transport team to come pick him up so we settled with the company of their choice, REVA. At some point during his plane ride the two-man crew decided unbeknownst to me to turn him down to 1 liter of oxygen, which was not enough flow to keep him safe. I had no idea this was happening…and is something I feel so much guilt over. I sat next to him, secretly celebrating over the advocating I had just done for my son all while he was struggling on the stretcher next to me.

Levi screamed the entire 4 hour journey and I was very concerned about how much he was sweating. They had him strapped to an adult stretcher and covered in big blankets- not once did they peek at his abdomen to check for retractions when he breathed. I asked if we could loosen the straps a bit to try to calm him down but they told me it wasn’t safe. Every time I showed concern they would reassure me saying he say still SATing just fine. I assumed he was still at his 4 liters of oxygen. I asked why he wasn’t being transported in an isollette and they replied that they didn’t do that for all babies. Levi was 4 pounds.

We got to Cincinnati close to 2am and when we unstrapped and unwrapped Levi in the NICU he was breathing so hard he was coming off the table with each breath. He was drenched in sweat and white as a sheet. I started to panic, as did the team of doctors and nurses as they examined him. They told me they thought that one of his lungs had collapsed and they both sounded like they had fluid in them.

They worked on Levi for several hours, trying to get him back to his norm. He started to perk up and get his color back a little. They decided it was a good time to take me on a quick tour of the NICU so I would know where everything was. A few minutes later I looked down at my phone and saw I had missed a call from the Cincinnati NICU. They number called again and it was the nurse practitioner. She said “Levi stopped breathing. We are bagging him now and need you to come back immediately.”

I raced back into the unit to find a team of doctors and nurses surrounding my baby- one doctor was using a bag to rhythmically breath air back into Levi…I will never forget the image of his chest rising up and down but knowing it was not happening by his effort. They told me his little body just got tired of fighting to breath.

I felt my knees starting to give out and I was on the verge of vomiting…the same feeling that has happened so many times in my journey as a mother with Malachi, but it wasn’t supposed to happen again with Levi. And each time those knees start to buckle I have to take a deep breath and remind myself that there is no one to catch me…those hands that would catch me need to be focusing on my son. Giving into my body’s instincts and my emotions instantly felt selfish so I fought the urge with every ounce of my being. I can’t afford to make things “about me” anymore.

Levi was put on the ventilator and I camped by his bedside that night. I couldn’t stop crying, plagued by the guilt of knowing I was the reason he was on that plane. I was the one pushing for experimental surgeries, and while my intentions were as pure as you can get, I had put my son through more trauma.

It was time for me to pump so I hesitantly snuck away to the pump room. As I sat in that small room I officially lost all control of my emotions. I felt so incredibly alone. I wanted to call Jake and tell him the bad news but I didn’t want to burden him two states away where he couldn’t do anything about it. And I knew that he likely had Malachi in the bed with him, and sleep with Malachi is rare and to be cherished. And I couldn’t think of a way to even start that phone call.

I remember looking into the mirror in that room and for the first time ever I didn’t recognize myself. Why was I here? Why do my children keep having to suffer? When will I get to be the mom I used to daydream I would be?

I called Jake a few hours later and he quickly made the 6 hour drive with Malachi. When he arrived we mourned together over the nights events, both of us exhausted from emotion but not wanting to leave Levi’s side.

I don’t know if you have ever experienced true grief- it is completely overwhelming and it feels like any moment you are about to die as your body does things you have never felt before. I really don’t even think I can accurately describe the feeling to you.

I still carry guilt from that night even though I know in my heart I shouldn’t. When the eye doctor tells me that Levi has to have surgery on his eyes as do most “brain damaged kids like him” I immediately feel the pang of guilt, wondering if that damage happened in the plane that night. The neurologist told me this week that he suspects Levi’s brain damage is more extensive than the last MRI shows, and I can’t help but feel those sharp pains of guilt all over again.

The guilt of the special needs mother is a unique thing. We blame ourselves irrationally for things out of our control. The “what ifs….” And we are too stubborn to let anyone tell us differently. We live in a world where our job 24/7 is to keep our children alive. Even during the healthy times, death still lingers on our minds. We pray that our kids live long lives but also pray that God doesn’t allow them to outlive us, as we fear for their wellbeing once we are gone. We live in a world where realities trump dreams. Our days are not 24 hours, but rather continuously running as one hour after another.

The life that I have been called to is a very difficult one and the wounds from the journey run deep. The girl in the mirror is not who I ever expected to be. This life requires me to cling to God and allow Him to be the one who catches me- His hands are big enough to handle my weary knees as well as my children.

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

We simply pray for the strength to get through one more day, and thank God for the beautiful blessings that these two boys are in our lives. And I do my very best to not stay in the memories. My mind fights back, clinging to every sight, smell, and sound. We continue to pray that God replaces all those memories with beautiful ones as we raise these amazing boys.

Side notes: we do not consider Levi as “special needs” but rather refer to him as “medically complex” for now…and we pray that formal diagnoses never need to come. I am told to expect him to have some level of cerebral palsy but not anything near Malachi’s CP.

I contacted the air ambulance company the next day who told me that “transporting him at 1 liter at 100% oxygen is essentially the same as 4 liters at 21%”. That is not even remotely true. Levi simply needed flow, which he did not get. They stand behind their crew’s decisions that night.

____________________________________________________________________________________

And the final step in that verse “Faithful in prayer.” This is something I am struggling with, and I have been open about struggling with this one for awhile now. Prayer is hard for me. Most waking moments my mind is consumed with keeping tiny children alive. When they fall asleep my body shuts off, knowing I need to glean all the rest I can while I have the opportunity to. Prayer is something I want to be more intentional about. More faithful in doing.

I don’t know where you are on the stages in this verse. Some of you may be in the hope stage, some in the affliction, and others in the prayer stage…the stage where the situation is beyond your control and the only option is to pray. But once you hit that final stage your emotions have taken a beating and prayer can be hard.

Let me encourage you to challenge yourself this week (I am challenging myself as well) to try to live out the adjective for the stage you are in. Joyful, Patient, Faithful. I don’t think it is any coincidence that these three are part of the fruit of the spirit. These emotions are often something that only God can bring to circumstances like mine!

Please remember our family this week, as it will be a challenging one. Levi goes in for another overnight sleep study on Thursday and to say I am dreading it would be a huge understatement. We also have some big talks with pulmonology coming up and will have to start planning our next trip to Cincinnati.

Oh, and here is some pretty fun artwork I did with the boys last week. Levi’s wasn’t feeling the “star making” portion but overall it turned out really cute. We managed to do 23 of these over the last month with the kids (each family did 1 canvas) in our church as a surprise for their parents. We would get their hand prints and foot prints and I would add the details layer by layer. I could officially paint these in my sleep haha! But seeing the joy it brought the parents tonight made it worthwhile. I had a WHOLE lot of “regard others better than yourself” moments while painting these, doing my best to make them as perfect as possible for their mommas just like I would want them to be.

Thank you for choosing to go on this journey with us each week.

Much love,

Leah

This week I have been doing a lot of evaluating on the life we are giving Malachi, and I decided we needed more “silly” things for him to be excited about. More traditions. We aren’t big holiday people- we don’t even really get into celebrating birthdays. Christmas is proving to be particularly hard for me as I can’t stop flashing back to Levi’s hospital stay last Christmas. On a whim I asked Malachi if he would like to go pick out a Christmas tree and he about fell out of his chair enthusiastically signing YES.

So on Saturday we headed to the store, Malachi wide eyed with excitement as I told him that some trees were soft like a puppy dog and some were sharp, like the teeth of a dinosaur. I told him we would let him feel them both and decide which one he wanted. Little did we know that Americans are crazy about Christmas and by the first week in December nearly every place is out of quality Christmas things. Duly noted for next year. We managed to find a handful of “sharp” Christmas trees left at a local store and Malachi was smitten. We loaded one into the van and when we got it home Malachi couldn’t stop giggling. Then we turned the Christmas lights on and he really lost it with excitement.

I went down into the basement and dug out a few bins marked “Christmas” that have made the move with us from the cabin to the rental to the new house. I opened them up and got hit with a wave of nausea as I looked inside. I remember buying these decorations pre-Malachi and daydreaming about all of the memories we would have with them. I had envisioned all of the kids helping me unpack these bins and decorate the house, fighting over which favorite ornament they would get to hang on the tree. It was like a time capsule of a life I envisioned I would have.

I talk to you often about the grieving process special needs parents go through. It never really completely ends, and such small and insignificant things can trigger it.

But I thought about that sweet little 5 year old upstairs, tickled by the lights on his real Christmas tree and I hauled those bins up the stairs, verbally dictating each ornament I placed on the tree so I could share some of the magic with him.

He is pretty much obsessed with the tree. We had someone stop by last night and I am confident Malachi thought the only reason he came was to gaze at the tree he picked out. We have put one of his switches by the tree and each morning and night we have Malachi “turn on/off the lights”- one of us hides by the outlet and waits for him to push the switch- timing it so he thinks he is doing it. Mr. Independent.

Every now and then I get the feeling that an emotional burst is about to take place. The last time this happened I was able to ward it off until the feeling went away. I am currently in one of those battles against fragility but still winning! We will see what this week holds before I do my victory dance.

Levi learned how to sit independently this week! And how to get up from the floor to the sitting position all by himself. Big boy! The pillow is there just in case but he is able to stay like this for over 45 minutes.

We also discovered this week that Levi is NOT a morning person.

Malachi and Levi are both in the church Christmas play this year- Malachi is a camel (we think) and Levi is a donkey. Their big debut is a week from today.

Tuesday’s neurosurgery appointment went well, so well that the doctor agreed to change him to an annual check up instead of bi-annually. Praise the Lord for less appointments! We talked about the MRI chaos from 6 months ago and decided to wait to get baseline imaging for another year, and this time around we will go for a CT.

We loaded up from the hospital and headed back towards home for a very special meeting with the high school class that is going to be working on Malachi’s Christmas toy.  If you weren’t able to read last week’s blog, a local group of students is going to adapt a ride on toy for Malachi to make it remotely controlled. This is a HUGE project and we are so excited to find some brilliant minds willing to tackle it for us.

I was about 20 minutes away when I got a call from the local news station asking if they could do an interview and come to the high school for our meeting. I am all about opportunities for awareness so I told them I wouldn’t mind.

I learned something about Malachi this week- he cannot handle big surprises. I have been keeping this project a secret from him. When we got to the school the class came to greet us and we went back to the classroom to discuss Malachi’s needs. Malachi seemed very overwhelmed by the situation and was acting very tense. Then he started to get emotional, sensing that everyone was looking at him and mommy was talking about him. Sweet little tender heart. He is always up for adventures but this was the first time I didn’t explain in detail where we were going or what we were doing. Lesson learned!

The meeting went so well and the students asked very specific questions that would help them create something special and perfect. When we presented this need we simply asked for someone to make the machine remote controlled. But as these kids processed Malachi’s story they decided to make this even bigger, talking about giving the machine a dinosaur theme and installing speakers for dinosaur noises and music. They had so many ideas- even a sidekick car for Levi to ride in. The thing that struck me the most was their genuine excitement to help. It didn’t feel like they were “doing a favor for us” but rather they genuinely wanted to make this a reality for Malachi. What a special group of students, and I can’t even process being that intelligent!

Here is the news story that aired about the project…I had to video it with my iphone so the quality isn’t the best:

The news reporter followed up with the class on Thursday to see their progress and sent me these photos:

And a link to that follow-up article:

https://newschannel9.com/news/local/cleveland-high-school-students-get-to-work-on-malachis-new-ride

I am so excited to see what they come up with! And we have already started to explain it to Malachi, and he is SUPER excited. We didn’t want him to get overwhelmed when they present it to him. He giggles each time we tell him about how fast he is going to be able to go.

I gave this week a theme: “Embrace the Tube”, hoping to get over my bad attitude about Malachi’s g-tube. Every doctor we spoke to talked about how much easier it would make our lives. How it would save us so much time in our day, as it was a direct way to feed and medicate Malachi. But this tube has instead been such a negative thing. We are constantly battling granulation tissue (so bad that his therapists say it is the worst they have seen), constant oozing so multiple dressing changes each day, stinkiness from all the oozing, and the doozy— Malachi hates it and cries and tells me “no” anytime I try to send food or meds through it.

So with this week’s new theme in mind I started trying to slowly run feeds in through the tube…so slow that hopefully Malachi wouldn’t even feel it. Immediately after the tube feeds ended Malachi seizures increased and he was out of sorts for hours. The amount of intestinal pressure did not chance with the tube feeds like I had hoped it would, as he wouldn’t be bringing in as much air as his oral feeds. I tried for three days then abandoned my theme and went back to feeding him like normal.

Tomorrow I will meet with the GI doc and we are hoping to switch out the style of tube to help with skin irritation and the granulation tissue. I am just so disappointed, but also so grateful that we didn’t proceed with the tube before now.

On Thursday Malachi started his new seizure medication called Epidiolex. I know I recap a whole lot so bear with me- but it is the first FDA approved cannabidiol medication. I went renegade about two years ago and started CBD oil on my own but got a little scared to keep increasing without being under doctor supervision as it can mess with liver function and needs to be monitored closely. But we are seeing the same initial results with this new med and he has slept 7-8 hours a night (with just one short wake up session in the middle) since we started it. His seizures are also slightly less intense, but he is still having about 8 of them a day. He is very sleepy as his body adjusts but we expected that. This Thursday we will double the dose, officially taking him higher than I was ever willing to go so I am excited to see what positive changes will happen.

Just a little humor for you today…this morning I did a lesson with the children at our church about the Last Supper. Last Sunday we had done church wide communion and it seemed like good timing for me to teach them the symbolism of the bread being the body of Christ and the juice being the blood that He shed for us. I explained to them that these were just symbols- things to remind us about the sacrifice Jesus made for us. Then I let them each take a cracker and break it, encouraging them to think about how much Jesus loved them. After the lesson I let them eat their cracker just for “waste not want not” purposes. It was definitely an ambitious lesson for the kids (ages 3-11) but when we got in the car after church I told Jake how well the lesson went!

Tonight I talked to a parent whose 5 year old son was in the room. She said she asked him when they got in the car what he did in children’s church and he replied “I ate Jesus’ skin.” Let’s all collectively cringe and laugh at that comment! Oh dear.

This week I will be tackling physical therapy and feeding therapy for both boys; Malachi also has horse therapy, GI and the dentist, and Levi has Neurology and Pulmonology appointments. Lots of hospital days and busyness!

Devotional thought time. Writing this blog each week is a wonderful challenge for me on so many levels. Emotionally it allows me to dump out everything in my heart and sometimes that action allows me to walk away from those emotions. Physically, I selfishly get to sit and do something I enjoy doing (writing) while Jake takes the kids. Cha-ching. That was a cash register noise if you didn’t get that. Spiritually it challenges me in my prayers to ask God to lay something on my heart. Every time I ask He comes through. That’s one of the many cool things about God.

This week has been a “dark” week for me. I have just felt so discouraged. I laid in bed this week and prayed over Malachi sleeping quietly next time me. As the words came out of my mouth “God heal his brain and stop his seizures…” he went into a two minute long seizure. Talk about discouraging! I try to pray with true faith and belief that God can do the impossible but my endurance lately has been wavering.

Tonight Malachi and I went on a date. This is the second one this week and is a result of the creating traditions challenge I mentioned earlier. Just he and I went to listen to the Christmas cantata at church and they sang a song that he knows very well. He was overjoyed and I encouraged him to sing along. He gathered up a burst of strength and opened his little mouth in anticipation but nothing came out. He tried again and again, each time yielding silence.

As I watch him struggle in a fight between his brain and his body I find my heart hurting deep within my chest. I would trade places with him in a heartbeat if it meant I could take some of the pain from his life. I never want him to think I view his struggles as a sad thing, I only want to encourage him, so I have to fight the urge to cry and tell him what a great job he is doing mouthing the words that he wants to say. I have to help him find beauty in the ashes, even though sometimes it is hard for even me to find.

This week I caught myself wishing I could talk to God about this suffering my son is going through. I started to convince myself that this is a struggle that is totally unique to me. No one else gets it.

And as I camped out on that mindset God started to flood me with story after story from the Bible of other moms who “get it”.

Hagar, the mother of Ishmael. She was exiled into the desert with her son they ran out of water. The boy was crying and she set him under a bush. The Bible then says in Genesis 21:16 “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.”

Moses’ mother, who hid her child as long as she could and in an act of desperation put him in a basket and into the river. The suffering and turmoil that decision must have brought her.

The widow from the story of Elijah. She and her son nearly starved to death. Then later the boy grew very sick and died. Elijah brought him back to life.

The woman in the New Testament who was in a funeral procession to carry her dead son to his grave when Jesus brought him back to life.

Then there is Mary…who watched her sweet and perfect son be brutally crucified, unable to stop his suffering.

As I thought about each of these stories I realized an eerily common thread. In each story the child came close to death or actually died before the Lord intervened. Why? Why in the world does God not see our suffering and ease that burden long before the thought of death is even there? Does God enjoy seeing our suffering, hoping that it will bring us close to Him?

I say this again and again but God is a God of compassion. The Bible tells us about His compassion over and over again in the scriptures…

Jeremiah 29:11 ‘ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you a hope and a future.” ‘

Trials and tribulations do not come from God. He does not create suffering in our lives to make us grow closer to Him or to test our faith. He is a good God and a loving God. Trials are a tactic the enemy uses to draw attention away from our relationship with God. And in those dark moments, the temptation to not turn to God is a real struggle.

But what I want you all to hear me say tonight is that GOD IS ALWAYS RIGHT NEXT TO YOU. Even in your trials, even in your suffering, even in your misery. He never leaves your side. And He sits close enough to speak life and encouragement into your ears….you just need to listen! He never promised to take away our struggles, but He does offer us a promise of His peace along with a reminder that He has overcome this filthy, evil world that we are passing through.

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Every single mom I could think of in the Bible that experienced suffering through the lives of her children had their God moment. They had that moment when He glued all of the pieces together and flipped over that puzzle to reveal that all along He had a a beautiful picture already designed from what we saw as chaos.

I think about the story of Joseph, a man who went through trial after trial. And he spoke these words:

Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”

When I read that verse, I find myself wanting to speak these words to the devil himself in regards to my family. What Satan intends as harm, God intends for good. And my prayer is that even through our trials, God will continue to use the Carroll family to be a lighthouse that can be seen through the storms.

Please keep our family in your prayers this week, particularly health both physically and mentally.

Lots of little but good things happened this week:

Levi finished his antibiotic! We are hoping the ear infections stay away. I know that sounds simple and not noteworthy, but the meds seemed to be hyping him up more than normal. Like bedtime at 2am hyper.

Malachi is officially on top of his pain from foot surgery. We even took off the casts this week for a much needed shower, which he was so excited about- he loves his shower!

Levi had his one year checkup at the pediatrician’s office. She was pleasantly surprised by how well he is breathing. He really only squeaks when he is sleeping now, which tells us his airway is growing and his vocal cords are widening. His sleeping squeak is still impressively loud but we have grown so used to it that it doesn’t keep us awake. Oddly enough, is actually brings me some peace as I know whether or not he is breathing. We still keep him hooked to his monitors at night, which is also an added stress reliever.

Levi weighed in at 19 pounds 2 ounces (14th percentile) and 29.25 inches long (20th percentile). Considering his rough start and his low birth weight I am thrilled. Just for some perspective, Malachi weighed 12 pounds on his first birthday and was wearing 3-6 month clothes! So in Carroll world, Levi is a giant haha!

And he is so incredibly close to independent sitting. I tried to take a video this week and he made a dive in the process haha.

Here is a photo if you are unable to watch the video:

Malachi got to go back to school one day this week for a few hours. There is so much sickness floating around our community so the decision to send him is always a struggle for me. But when I asked him if he would like to go back this week he was ecstatic; we waited for a day when the teachers said there was very little classroom sickness and sent him for a few hours. It always takes him some time to re-adjust to the sensory overload school provides but he was a happy little boy getting to see his school friends again.

I know I have said this before, but I will mention it again- our parenting motto is giving Malachi the best quality life we can possibly give him. We don’t care that he may never say his ABCs, read a book, do a math problem…our priority in sending him to school is giving him a chance to be around his peers and have some independence away from mom and dad. The control freak in me hates dropping him off and walking away, but I see how much he enjoys having such a big kid thing to do and I try to respect that.

As you can probably tell from pictures, Levi got a new walker this week. Even though he is our second child, there are so many “firsts” for us as parents. Watching him learn how to maneuver has been a fascinating process. We have had to teach Malachi how to do everything- how to move his mouth to get milk out of a bottle, how to hold his head up, how to punch things with his fist. Seeing a child just naturally do things is such a different experience. We have laughed so hard this week as we have watched Levi discover how to walk in his walker. He loves to walk as close as he can to Malachi, much to Malachi’s delight.

I took a video of his first time in it, and now he is cruising like a champ. I thought I would share that first time video with you as it gives you a good 45 second glance at Levi’s silly personality. Note how proud he is when Jake compliments him at the beginning and his lovely tooting noise at the end…a noise he has officially mastered at waits for less-than-ideal times to practice…like when mom is on the phone with doctors or right in the middle of the Sunday sermon. Here is the video:

We had several appointments this past week, and have several more this week including Malachi’s bi-annual neurosurgery check up. 6 months ago we went to this checkup and they ordered a rapid MRI to get some baseline images of his shunt. When I took him for that MRI things did not go as planned and I had a legit emotional breakdown and snatched him off the table when they talked about bringing in anesthesia to sedate him. I had some major Levi flashbacks that day and left, a sobbing mess.

To me, there is no reason to be so invasive for baseline imaging but I agree that we do need some images. I suspect that since the surgeon did not get that baseline MRI he will want to order a CT this time around but we will see. Malachi likes CTs because the machine makes cool noises, so we can handle that one.

Malachi will also be starting his new Epidiolex medication this week. This is the first FDA approved cannabidiol medication to help reduce seizures for kids like Malachi with uncontrolled epilepsy. I have heard great things from other moms in my special need online communities, but there is some slight hesitancy as we are entering another “guinea pig” route. There are no long term studies on this medication and that always makes me a bit nervous. But if we can successfully reduce his seizures from his 6-8 a day to less than 3 then it is worth looking into.

Any time we introduce a new anti-convulsant (seizure med) Malachi takes at least a week or two to adjust to it. I am assuming that this one will not be any different, even though this week’s starter dose is .25 mls. That is just a few drops. Next week we will double that amount. I always dread these weeks as we tend to get a very lethargic Malachi- I hate seeing him so lifeless.

I am really excited to share with you all about Malachi’s fun Christmas gift this year! Malachi is such an amazing child, and seeing him smile despite his physical struggles is inspiring. He genuinely has such a sweet heart, and has been giving me the BIGGEST hugs this week when I pick him up and carry him. He squeezes me so tight that his little muscles shake, smiling from ear to ear as I tell him how strong he is. I wish each and every one of you could spend a day with him and see his precious heart.

I have been trying to think of something extra special to give him this year and I finally picked it out, but knew that it was something he wouldn’t be able to work on his own. I reached out on Facebook to see if anyone was able to help adapt it and one of the local high schools mechatronics/robotics classes volunteered to take on the project! I didn’t even know classes like these existed!

This is a ride on toy called “Wild Thing” made by Power Wheels. It hold up to 100 pounds and unlike other Power Wheels, this one will accommodate his dislocated knees and feet issues. We can also get one of his special seats to attach making it fully supportive and comfortable for him. The only issue is that it is controlled by two joysticks at each hand, which Malachi clearly cannot do. We asked the robotics team if they could make it remotely controlled by us and they think they can accomplish this!

I am so excited to see what they are able to come up with!! Malachi is very into “running” fast these days, and we do the best we can racing him around in his wheelchair. But to know that he could independently go fast will put such a big smile on his face! The device is small enough that it could fit in the back of my car and could even go along with us on hospital appointments and his soccer games so he can play independently. I am so thankful that this group is willing to tackle such a big project for us.

I will drop off the special seat and the Wild Thing this week and I am taking Malachi by so they can get to know him and his needs a bit more. As you know, I am all about awareness so the opportunity to share Malachi’s life with a group of young people who have the potential to better the special needs world with technology later in his life is something I am looking forward to.

Alright, now into the mind of Leah…

Sometimes I despise my ability to remember things so well. Memories can be such beautiful things, but they also hold the potential to rip open freshly healed scars. These memories have been my biggest battle lately as we are now into the “last year at this time…” mode.

This time last year is when we were officially given a diagnosis and prognosis for Levi’s condition: bilateral vocal cord paralysis. It was like a sucker punch to my gut. While Malachi’s untimely birth brought about overwhelming feelings of sadness and hopelessness, Levi’s new diagnosis brought new ones into the mix…anger, bitterness, defeat.

I remember laying in bed and thinking, why us? Why again? And many of you have resonated these same thoughts with us through this journey.

I am a problem solver. Give me a problem and enough time, and my mind comes up with potential solutions. With medical conditions, this skill holds zero value. I am powerless, with no solutions to offer. I am simply a bystander.

But I am overwhelmingly thankful for the many people in the medical community that aren’t powerless, holding the ability and desire to continue creating quality living for kids like mine. Five years ago, my Levi would have a trach right now. But thanks to some problem solving minds and a team of doctors willing to take a chance on us, Levi is trach free. Again, please hear me say that I am not anti-trach. They are wonderful, life saving devices! Some of Malachi’s best friends have trachs and I am so thankful that that technology exists. But I am so thankful for options.

A year ago today, we were facing some huge decisions for our Levi. I think about the poem by Robert Frost that talks about the road not taken…

Please keep all of us in your prayers this week as we continue to navigate our wonderfully crazy life. We continue to pray for and believe in a total healing for each of our sons.

God bless,

Leah