Let me start this entry with an adorable photo from two September’s ago…

We were able to pack so much into this past week! Soccer games, therapies, a yard sale, a wedding shower,3 services at church, house cleaning, and so much more. Here is a cute photo from Malachi’s music class on Tuesday…his buddy was helping push his chair around. The quality is very poor but cute nonetheless!

One of the highlights from the week was having the opportunity to share Malachi’s story at a United Way fundraising event! It was incredibly difficult to talk about Malachi’s rough start without mentioning God (this was a secular event), so it was strictly facts. As I wrote out my speech I had to dig through his old journals and make sure to get my weights and dates right. Here are a few stats that blew my mind again haha.

• Malachi was just 1 pound 12 ounces when he was born. Unbelievable.
• Malachi was 2 pounds 10 ounces when he underwent his first brain surgery (and had already had two other surgeries that were not related to his brain).
• Malachi was just over 5 pounds when he had his second brain surgery.

This fundraising event was focusing on some of the donors the United Way sends funds to, which just so happens to include the Boehm Birth Defects Center (Malachi’s neurosurgeon group). I was able to share about all the ways they have reached out to our family during our hospital stays, bringing us meal vouchers and gas cards so Jake could still go back and forth to work. There are so many amazing organizations out there willing to help local families like ours. When you have jumped in the car and raced to the ER with a very sick kid and end up in the ICU for days, meal vouchers are such a kind gesture.

Reminiscing about the night Malachi was born always makes my stomach turn. In fact, we had to drive by the hospital last week to go to a soccer game. I have to mentally block out the hospital and Ronald McDonald House as I drive by it, and this trip was no exception. I turned the corner and breathed a sigh of relief only to have an ambulance pull out in front of me. Seeing the back of that ambulance immediately took me back to Malachi’s NICU days, having to watch as he loaded and left in an ambulance without me, headed to Nashville for eye appointments. Seeing the back of that truck made my blood run cold (a real thing for the record). I keep thinking that time will take away these negative thoughts but in reality they almost seem to be getting worse.

Speaking of organizations that help families like ours, after HOURS of paperwork and applications I did hear back from another local organization telling me we were chosen to receive a grant for equipment. I was able to order a twin bed (with special rails and a trundle option for sick nights so I can be close), a base for his shower chair so I don’t have to bend over as much, and some switch toys for Malachi.

Here is a stock photo of Malachi’s twin bed:

Switches are ridiculously expensive, so I was absolutely thrilled to be able to get some for him. If you have no clue what I am talking about, let me give you a brief explanation! Children like Malachi lack the fine motor skills to independently play with toys. Switch operated toys have a plug in for a special button that Malachi can swing and hit, which will then activate the toy. Toys that work on switches are usually over $200 each, and the switch itself is another significant cost, but they are universal so once you have one you are set. We have been working with Malachi to operate a two-button recordable switch, where I can record a phrase into each one to help him communicate. With this grant we were able to get a four-button recordable switch (over $300)!! The gear started coming in the mail this week and every time a package came it felt like Christmas morning!

I recorded a short video to help you see how we are able to use these switches to communicate and give Malachi some independence. He was so proud of himself:

Jake and I are still plugging away at the house, trying to get it ready to be listed. With our busy schedule, the process is painfully slow but we are making progress! We were able to have a big yard sale this weekend and clear out some clutter. We also think we have officially found “the” houseplan for Malachi, taking all of our criteria into consideration. I figured it might be fun to share it with you and help you follow our train of thought. Disclaimer: we are still actively looking at plans, so this may not be the final one. You know how fickle women can be.

Of course, it will be completely transformed into a Malachi home, meaning the “Dining” room will become a therapy space for Malachi, and the “Study” would be Malachi’s bedroom…it has to be close proximity to the master so we can run in quickly for seizures at night. We will also be looking at making major changes in door and hallway widths, as well as making the bathrooms a little larger to accommodate his chair. The garage will most likely be cut down, and will have to include a ramp. And we will be making as many cuts as possible to keep it affordable, allowing us to spend our money for the “musts” for his comfort. But the idea is WIDE open and close together. We are loving how there are so many access points to the main areas so Malachi can be wheeled in one place and wheeled out another.

So, now on to other topics. This week has been an exceptionally dramatic one in so many ways. Early this week I was involved in a situation with an angry soccer parent. As the conversation grew heated, I found that every ounce in my body wanted to engage in the yelling. Every ounce of me wanted to take all the bottled up rage I have stockpiled from sleepless nights with Malachi and aim it at this human target, unleashing my fury in the same manner that was being done to me. But in the deepest part of my soul was a voice telling me “Be like Christ.” As difficult as it was, I simply took a deep breath and listened. And I can’t even put into words how hard it was to do that. It went against my nature.

As I got in the car, I started thinking about all the things I had really wanted to say. I wanted to fight back. I wanted to defend myself. But I couldn’t stop thinking about Christ. I thought about that moment in the garden when he was arrested, and how he remained a peacemaker, even healing an arresting soldier’s ear.

That altercation was an eye opening reminder to me about how difficult it is to be a Christian. Sometimes the things we are asked to do go COMPLETELY against our nature. I witnessed a battle between worldy Leah and the daughter-of-the-King Leah. And it was pretty intense. And I came very close to losing the battle and engaging.

In the aftermath, I find myself having lots of moments throughout my day riddled with bitterness. All week long I have struggled with the frustration that not only do we deal with Malachi stress, sleepless nights, and so many other unusual battles, but this week I had to sit back and watch an attempt to assassinate my character. I truly feel under attack by the devil this week as he is trying to shake my spirit. I have watched those seeds of bitterness start to take root and invade my thoughts. This is something I have had to pray heavily about.

A few days later I had one of my players come up to me and tell me that her family had witnessed the incident, and when they got into the car her dad told her “You know, I am very proud of Leah. That dad was in her face, yelling at her and waving his finger and she didn’t react like most people would. She just acknowledged his frustration but didn’t react. That must have been hard to do.”

When she told me this, I thanked the Lord for the self control he gave me in that moment…a self control that was clearly not something I had in me apart from Christ. And I was reminded that sometimes we are called to do things, not so much for our own benefit, but for the benefit of others. We are the light of the world, we are the salt of the earth. While we cannot ever achieve the level of Christ, we are called to strive to walk as he did, including becoming a peacemaker. That altercation may have simply occurred for someone else’s benefit…and please, oh please, do not perceive this as me patting myself on the back. On the contrary, I am embarrassed by some of the thoughts I have had this week toward others involved. That is something the Lord and I are working through.

In an unrelated note, Jake and I were driving this week and talking about the things we were going to sell in our yard sale. As we went down the list, we couldn’t help but recognize the many ways in which God has provided for EACH AND EVERY need in our lives. Psalms tells us: “The Lord is my shepherd, I shall not want…” and I can attest to that scripture. We laughed as we reminisced about the blessings that He has prepared for us over the years- most of them even before the need was evident! Story after story, item after item, we have seen God’s hand in our life. God has been so good to our family.

One of the new verses that I have chosen to live by comes from Matthew 6:34 “So don’t be anxious about tomorrow, God will take care of your tomorrow too. Live one day at a time.”

There is power in those words. Read them again!

So we will try our best to do just that- live one day at a time, relying on God to make our tomorrow exactly as He sees fit.

Off to bed! Thank you for sticking with me through this lengthy entry.

God bless you,

Jake, Leah, and Malachi

So it is just after midnight and I find myself needing to take a deep breath before I begin writing. My emotions today have been all over the map, so let me take a different route with the blog!

Things I am thankful for from our week:

I am very thankful for the ability to stay at home with Malachi. As we zoom around town to his many therapies and appointments, I can’t help but wonder what kind of guilt I would be experiencing had I not been able to be the one driving him.

I am thankful for an exceptional physical therapist. She is one of Malachi’s favorite people and is so productive in her sessions with him. It is so refreshing to sit back and not only watch someone else push your son to his potential, but to find another soul that recognizes that Malachi CAN.

I am thankful for very dear friends that reach out to me on their days off to reconnect, choosing meeting places and activities that accommodate Malachi and I. It is these little gestures that truly touch my spirit.

I am thankful for the strength (undoubtedly only from the Lord) to be able to stay active in our church body and fulfill callings that God has placed on my heart. Nothing feels more refreshing than surrendering to God and trusting Him to direct your paths in the direction He would have you to go, and give you the strength to do the tasks.

I am thankful for a certain couple whom we have never met that so generously encouraged us this week with a perfectly timed financial gift. God is good.

While there are so many incredible things I can list to be thankful for, there is a dark side to our days. Each day is full of physical, mental, and emotional fatigue. Each day I find myself struggling to not worry about the future. Each time I bend down to pick Malachi up, I think about the day in which I will not be able to do so.

Every sentence I have typed in the last few minutes has been subsequently deleted after I read how self centered they sound. I am trying to decide how open to be with you, at the risk of sounding selfish.

This week I have been reminded that the world continues to spin at the same rate for everyone in it. For others that means that there is an ever advancing timeline of events that continues to flow over time. For me, we seem to be stuck in our timeline, not seeing many huge improvements with Malachi, and wondering if there is another milestone anywhere on the horizon. Week after week I watch my little warrior work, and achieve very few significant results. I worry about my health and whether I will outlive my son…I worry about my son outliving me. I worry about things I don’t like to even verbalize.

I find myself in a jealous place, frustrated that others can enjoy life while we are still in a survival mode. This week I have found myself waking up every morning with the only goal being to mentally survive until bedtime. I am in a constant fog of exhaustion, relying on caffeine and God to get me through.That combo leaves me very emotionally fragile, with even the smallest things causing me to erupt with tears.

Such a grab bag of emotions.

Alright- I recognize I am rambling. Let me move on…

Last week we were able to successfully fit Malachi’s stander. Here is a picture:

I tried to get one with him smiling, but such a picture does not exist. He is still not a fan, but I am happy to say no more tears have been shed in the stander process.

Malachi had some great peer time this week. He had his music class. He had a play date with one of his buddies at church in a local park. He also tagged along to two of our soccer games this week and sat by the bench close to the girls. On Saturday, he joined the youth group at the local food bank and listening to the chaotic commotion as they filled bags. And finally, this evening he spent some time with some Ohio cousins. He liked being “one of the boys”.

Malachi is still working hard to communicate with me in his own Malachi way. He has been using his “sad” face more and more to indicate “no” and I am very intent on respecting that, hoping that he will communicate more to me. But in the process, he is being spoiled rotten. He used his communicating to eat cake icing for lunch today…crafty little boy.

My eyes just crossed, so I think that is my cue to wrap this up. It has been a very long and exhausting day haha!

Please  continue to lift us up in prayer. Right now I need some relief emotionally. I am experiencing emotions I am not proud of. Pray that we get to a place where we are rested and able to enjoy every day. Pray for some major milestones this week…we are due for one!

And thank you for allowing me to be me. 🙂

God bless,

Jake, Leah, and Malachi

 

There are two verses this week that have been floating through my mind…

Isaiah 45:2 “I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron.”

Deuteronomy 31:8 “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

As we are always turning new corners in our crazy life, this verse continues to ring true. It is so exciting to see the ways in which God has been preparing us for this life full of mountains. Jake and I are continually in awe when we recognize the many ways in which God has gone before us and prepared the path so that we can navigate through these mountains with ease.

A perfect example is one that has been working its way into our lives in the last few weeks. In a way that could be orchestrated by no one other than God, Jake and I have been offered a parcel of land in our town on which to build a handicap accessible home for Malachi. The cabin that we are currently in is working well, but half of the cabin is not able to be used with Malachi as it is a loft requiring us to travel up and down stairs. The downstairs is nice and open with the exception of the bedrooms, which are down a difficult to navigate hallway.  As you can probably tell from pictures, we spend our time mainly in two rooms of the home.

So when this opportunity arose, Jake and I calmly and logically thought through our options, trying our very best to not think about the exciting “what ifs”. We have formulated a game plan to try to sell the cabin and then proceed with the process of building a home, relying solely on God to open and shut doors when needed. There is so much peace in being able to simply leave big things in the hands of God, trusting that He will guide us where He wants us.

Obviously my brain is trying desperately to malfunction as I think of all the steps that will need to go into such a big task, but like every other aspect of our lives we will simply take it one day at a time.

So aside from home repairs and lots of conversations, our week has been uneventful. Malachi is still not sleeping well so our weekends consist of Jake and I taking turns napping, desperately hoping to refill our batteries enough to get through another week. I know it sounds dramatic, but believe me when I say that 3.5 years of very little sleep can take a toll on you.

Malachi has been his silly, quirky self this week with the exception of today. While he has been having more seizures than normal on any given day, today was much worse. After church he had 6 small ones in a row and then passed out from exhaustion. We were at a friend’s house when they happened and it is always hard to know what to say to people witnessing his epileptic episodes. If you don’t know what to look for you would almost think that he had been scared and jumped in fright. His seizures are very frantic at the beginning, with his body moving briskly to the left while his eyes move rapidly up and down. When he seizes in public I will usually try to cover his eyes to keep people from having to see that, as it is difficult to watch.

Malachi used to laugh at the end of his seizures, but now they scare him and he will cry a very confused cry. It really is hard to watch. I find myself still having to look away for a few moments, as watching something overtake his body is heartbreaking.

I never know how much people care to know about these episodes, so sometimes I stick with the mindset that ignorance is bliss and allow others to assume that he is simply cat napping as opposed to being passed out from seizures. Epilepsy is such a horrible thing. I will be calling this week to see if we are able to increase his meds just a bit.

But in positive news, Malachi has been decreasing his vomiting significantly! In fact, he only threw up twice this week which is a new record! Praise the Lord for the dry mop in the corner!

He even sat through an entire soccer game without needing to be burped! That is such progress from even a month ago!

As I was reading my devotional book this week (“Streams in the Desert”) I read an entry that stole all of my attention and left me clinging to every word. I found such truth in the words and thought I would share them with you this evening. It is a little lengthy, but I hope you find it as insightful as I did.

“There is a divine mystery in suffering, one that has a strange and supernatural power and has never been completely understood by human reason. No one has ever developed a deep level of spirituality or holiness without experiencing a great deal of suffering. When a person who suffers reaches a point where he can be calm and carefree, inwardly smiling at his own suffering, and no longer asking God to be delivered from it, then the suffering has accomplished its blessed ministry, perseverance has ‘finished its work’ (Jame 1:4), and the pain of the Crucifixion has begun to weave itself into a crown.”

“It is this experience of complete suffering that the Holy Spirit works many miraculous things deep within our soul. In this condition, our entire being lies perfectly still under the hand of God; every power and ability of the mind, will, and heart are at last submissive; a quietness of eternity settles into the entire soul; and finally, the mouth becomes quiet, having only a few words to say, and stops crying out the words Christ quoted on the cross: ‘My God, my God, why have you forsaken me?’ ”

“At this point the person stops imagining castles in the sky, and pursuing foolish ideas, and his reasoning becomes calm and relaxed, with all choices removed because the only choice has now become the purpose of God. Also, his emotions are weaned away from other people and things, becoming deadened so that nothing can hurt, offend, hinder, or get in his way. HE can now let the circumstances be what they may, and continue to seek only God and His will, with the calm assurance that He is causing everything in the universe,whether good or bad, past or present, to work ‘for the good of those who love him.’ (Romans 8:28) ”

“Oh, the blessings of absolute submission to Christ! What a blessing to lose our own strength, wisdom, plans, and desires and to be where every ounce of our being becomes like a peaceful Sea of Galilee under the omnipotent feet of Jesus.”

As we enter another week of the crazy life, we would like to ask for wisdom as we make decisions for our family. Pray that the process of preparing and selling our home is a simple and easy one and that if we are not in the will of God, that He will let it be known.

Pray for Malachi’s seizure activity to completely cease and for a supernatural, unexplained healing from God for his brain. Pray that the angels continue to minister to him during his times of altered consciousness. Pray for Malachi’s quality of life to continue to improve and that his progress is so significantly that it is noticed by all.

And pray that he sleeps. At least 7 hours a night. All in one chunk. Every night for the rest of his life…haha 🙂

God bless,

Jake, Leah, and Malachi

My, what a busy week we had last week! Malachi loves to go on “adventures” as we call them, and has been so tolerant of our busy schedule. It is so sweet to watch his face in the rear-view mirror as he tries to figure out where we are headed.

Monday was one of Malachi’s best sessions on his horse. We found some battery powered fans online and clipped on to the horse’s saddle- it worked better than we expected and the temperature change definitely helped motivate him a bit more than normal. He was verbally commanding the horse to walk and held his head up beautifully most of the session.

Our soccer season has picked up as well. For anyone new to the blog, Jake and I coach the girl’s soccer team at the high school. We take Malachi to every game and set him up with either his grandma or in his wheelchair with his DVD player. He stays close to the bench where we are just in case he has a seizure and he really enjoys the excitement…especially when daddy yells at the refs haha. This week was exceptionally cute as Malachi was trying his hardest to mimic Jake’s commands as loud as he could. Soccer has always been a passion of mine and coaching is something from my “former life”. Being able to continue with Malachi in tow has been refreshing. Here are a few pics one of the photographer moms took.

 

Soccer has had us on the road at least two evenings per week, typically about an hour away. We have been hoping that the rise in activities would wear Malachi out but unfortunately it has only seemed to somehow worsen his sleeping habits!

Tuesday we headed to town for Malachi’s weekly music class. While Malachi has been throwing up a lot less frequently, it seems that every Tuesday on the way to music we are having to pull over several times for close calls in the van. Vomiting in the car seat ranks up on my top 5 most miserable Malachi messes…too many crevices! So if we can safely get over the the side of the road we do our best.

It was also an odd day as I met with a lawyer concerning Malachi. Now that we are getting a grasp on this crazy life we have to start making certain that we have things in place for our sweet boy if something were to happen to Jake and I. While typical families can probably think of one or two couples immediately that could be listed as guardians, Jake and I have a little bit more of a struggle on our hands. There are plenty of people that come to mind that would be loving and wonderful parents…but they also have families of their own and we find it very difficult to ask them to bear such a burden- and please understand that I hate to use that word in reference to Malachi. We gladly have accepted Malachi and his many needs, but asking someone else to alter their lives so significantly is something we hesitate to do. We have a lot to think and pray about concerning Malachi’s future.

Wednesday was therapy and church day, and then came Thursday…stander day. You my remember that a few months ago we started the process to get Malachi fitted for a stander- a device that helps his body feel the sensation of weight bearing. If you aren’t familiar with them, they very closely resemble a torture device as he gets strapped in and propped up, but it will help with his muscles and posture.

We headed to Chattanooga to pick up the stander and had to take about 45 minutes to get him fitted in it for the first time. Malachi started out in a good mood but it quickly transitioned into a sad one…then he grew just plain angry! By the end he was a mess of tears, crying as if he was in pain. It was a cry we have not heard in quite some time and made my warrior momma mode kick in. I wanted them to hurry up just as much as Malachi! The kicker for me was that Malachi was trying to communicate his dislike by frowning, which I typically respond immediately to as we are trying to teach him how to communicate his likes/dislikes with us. It was hard to ignore the teachable moment and see his pain level continue to rise and not alleviate it.

Oh boy has Malachi mastered his “sad” face. He has been cracking us up all week with his deliberate frowns, so I made sure to catch it on camera for you. This transition shows his happy face, then his forced sad face, and back to happy by the end (over the course of 15 seconds). YAY for communication!

 We will be slowly introducing the stander as much as Malachi’s pain level will tolerate. When your body isn’t used to standing, or even putting weight on your legs it can be a shock to the system.

Friday was “catch-up” day and we ran all over town knocking off things from my every growing to do list. For quick trips into places like the post office, I strap Malachi to my belly in his toddler carrier. It looks ridiculous to have a 40 pound child strapped to my belly but is so much faster than unloading the wheelchair!

In addition to being soccer coaches, we are also youth pastors and will periodically choose a kid to take out to dinner in an attempt to connect with them a bit more. Our schedule was wide open Friday for dinner so we picked up one of our middle school kids and headed to a local restaurant for some catfish. We had a nice meal, but the highlight of the evening was when it came time for the bill to be paid. The waitress came by to let us know that someone had picked up the tab and simply passed the message along: “God bless you.”

As I have mentioned before, this type of kindness is shown to our family periodically, and each time it is simply humbling. In fact, this was the second time this week that someone had picked up our ticket anonymously (the two times we went out!) But the exciting part for me was to see the look on our teenagers face as he realized the kindness he had witnessed. He looked as touched as we did as he tried to wrap his head around the idea. It was a wonderful teachable moment in which we were able to explain the ways that God provides, whether financially or simply encouragement. We also explained the challenge Jake and I feel when this happens to “pass it on” and  when we monetarily cannot do the same act, to look for ways to bless others with what we do have access to. It was a great moment.

And I have been so challenged this week to daily lift up those kind strangers; I pray that the blessings they have given to my family would be returned to them in powerful ways.

So just another busy and wild week for the Carrolls. I have to admit that I have struggled tremendously this week in several ways. First of all, the talks I had with the lawyers about the “what ifs” saddened me deeply. It is so hard to think about what would happen to Malachi if I were gone. I found myself having to take my thoughts captive and give that worry up to God, trusting full well that He would provide care for Malachi if it was needed.

But the biggest struggle this week has been physically and emotionally. Malachi has been sleeping 4-5 hours a night, broken up into 2-3 chunks. So at most he sleeps for 2 hours then stays up for two more, then repeats the process until the sun comes up. As I looked in the mirror this morning I noticed some mascara under my eyes and spent time with a towel trying to rub the dark makeup off. It was only then that I realized that that wasn’t mascara- it was dark bags under my eyes.

I look at my hair growing silver and my swollen knuckles- already feeling daily pain from trying to hold tightly to a wild Malachi. I see my big ol’ belly protruding out- a mix of lack of exercise and poor nutrition. Some days I don’t have time to eat while other days are so busy and on the road the only option is fast food. I am also reminded of the way my belly was cut entirely through my muscles to get out my baby who wasn’t breathing. I am fueled by caffeine, and since I can’t stand the taste of coffee, my source for caffeine falls to Coca Cola (leading to an even bigger belly).  My eyelids are always heavy with sleep and my back continuously aches from Malachi’s care. This week my hips were painfully sore as I had walked a mile with him strapped to me so he could see the horses down the road. Facebook kindly sent me this “reminder photo” this week- this was taken right before I found out I was pregnant with Malachi!

When I look in the mirror I see this shell of a woman I used to be. One who exercised regularly, ate organic foods, drank only water. One who could do nightly devotions and not fall asleep during prayers. One who was determined to be a super mom and have four strapping boys.

Proverbs 16:9 “In their hearts humans plan their course, but the LORD establishes their steps.”

So as I stare in that mirror I have to remind myself that I am in the midst of a very special calling from God- I have been called to be the caregiver, mother, and cheerleader for one of God’s very special creations. This life is no longer about me. It is so much greater as daily I am given the chance to witness unconditional love and living a life for someone other than myself. Oh, how I have been humbled beyond measure. The Lord has established my steps.

And finally, I thought you might enjoy seeing a video of Malachi’s story time with his daddy:

God bless,

Jake, Leah, and Malachi