The Photo Flop

This week started with the excitement of the eclipse! Our town was very close to the “path of totality” and it was astounding how many people had traveled in for the big event. Schools closed as the eclipse was scheduled to take place around the time of dismissal and although they did provide each student with a pair of glasses, they did not want to risk any of the kids unknowingly damaging their eyes by looking at the sun.

Jake and I took turns “sleeping in” and stayed in our pajamas past noon. We ventured out to the property for the main event and sat on the back porch; although we didn’t look up at all we did get to see the beautiful skies all around us. These photos were taken around 2:33pm.

While Malachi did get past his head cold, it seems that he is hanging on to some junky breathing. There is still a lot of congestion which leads to an increase in seizures and vomiting. We kept him home from school until Wednesday to make sure that he was as close to his 100% as possible.

Malachi is truly loving school. He gets so excited when we talk about going, and is starting to bond with some of the teachers and students. The first two weeks he would get very sleepy at school, as it almost overwhelmed his little brain. But this past week he seemed to be more tolerant of the 3 hours there.

We also have started the trials of leaving him there without momma! Wednesday he stayed for an hour by himself, Thursday 1.5 hours, and Friday 1 hour and 45 minutes. This week we will try to transition him to the full three hours and see how he does. The adults in the classroom seem to be getting much more comfortable managing him and his quirks, and as their confidence level rises so does mine.

Picture day was Wednesday and it was a big ol’ flop. After the first camera flash went off, he shut down completely and kept his eyes shut tight. I tried everything in my arsenal to get him to smile, and after several minutes of failed attempts the photographer (who was incredibly nice and tolerant) said, “This is the best one I’ve got, so we will just go with this one. If you don’t like it we would be happy to try again during re-takes.” He flipped the camera around to show me a picture of Malachi, head flopped forward with his chin resting on his chest, mouth wide open but not smiling, and eyes shut. I told him I understood and did the walk of shame out of the gym, completely disappointed by our first school picture attempt.

As I got in the car to leave for Malachi’s trial that day I started thinking about what the man said and I caught myself getting emotional. I pushed the thoughts out of my mind, but sure enough they came back that next morning as I laid in bed next to a sleeping Malachi. I looked at my little warrior and just lost it, crying uncontrollably. I couldn’t stop focusing on the man’s words and the horrible picture of Malachi. From this strangers perspective, THAT picture was a winner. That was the best that he expected for my son. THAT horrible, slumped picture was the expectation for my son. And it absolutely broke my heart.

As Malachi’s mom, I want everyone else to see the bright and wonderful child that he is. I want others to recognize how much he understands. I want others to see him as a typical boy…not a mentally retarded child in a wheelchair.

Jake and I make every effort possible to help the world focus on Malachi’s abilities as opposed to his disabilities. We cringe when people draw attention to his differences, as we think every child deserves to be treated with dignity. We will always dress him in appropriate clothing, assuming that if he could talk he would tell us “Mom, get me that neon orange shirt like all the other kids!” We always try our best to treat him as if he completely understands what is going on around him.

We fight for him, and we always will. But picture day I lost that fight. I couldn’t get that photographer to see the 4 year old boy who can take a good picture if you give him the right setup. And it broke my heart. I started thinking about that picture being in the yearbook and the things people would think based on it. My heart ached more than it has in a long time knowing that I am not always going to be able to convince others to see and focus on his potential.

It has been a long while since I allowed myself to break down, so after just a few minutes of raw emotion I tried to gather myself back together. With Malachi’s junky breathing he is up and down most of the night and sleep is rare. These are the weeks when he will only stay asleep if our foreheads and noses are touching, which doesn’t mesh well with sobbing Leah (or pregnant Leah haha).

In the midst of our school days we had several other appointments. Malachi got fitted for new ankle-foot orthotics (AFOs). We broke away from the camo print and went to dinosaurs! We will get them back in a few weeks and I will post a picture. Malachi also had horse therapy and got to ride a HUGE horse named Sully. He had one of his best sessions yet and giggled most of the 30 minutes.

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I had an appointment with my regular obstetrician and everything is continuing to check out well. This is such a big week for us as I am officially 24 weeks pregnant. Malachi came at 24 weeks 6 days so we are looking forward to the 25 week mark! We will see the high risk doctors again on Wednesday and get another look at baby Levi.

The house project is still moving right along and we are told to expect to be in in the next two and a half weeks! Here are a few updated pictures for you:

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During the eclipse our pastor sent out a group text to a small group of us saying “If this is the day Christ comes back, I will see you all in heaven!” And joked about who his neighbor would be on the streets of gold. As I pictured the scene I couldn’t help but smile from ear to ear as I thought to myself “Don’t come looking for us! We will be running through the streets and climbing trees with Malachi!”

There is so much joy and hope in knowing Christ. What a blessing it is to know that one day Malachi and I will WALK hand in hand down heavenly streets and be able to talk to one another about the greatness of our God. I will hear him sing those words from the songs he loves so much.

Oh, what a glorious day that will be.

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Sunsets at the new house just take my breath away! The beauty and the brush strokes remind me of our Creator.

Thank you for praying for our family fervently, and please continue to pray for miracles for Malachi. Pray for Levi’s health and safety. Pray that my body will not do anything to sabotage his well being and that God will continue to protect him. Pray that God gives me supernatural patience to deal with the trials of being special needs mommy while simultaneously learning how to cope with pregnancy hormones.

May God bless you this week!

Jake, Leah, Malachi and Levi Carroll

 

 

Sitting By the Brook

The school germs won their battle this week as we worked through our first sickness. I am thrilled to report that this round seems to be mild and Malachi is feeling much better. He started running a low grade fever on Wednesday paired with sneezing and a snotty nose. That same morning I noticed a major increase in seizures and had a suspicion something was brewing, but it took us until dinnertime that day to confirm it.

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Last night was the first night that we took him off medication (Claritin) and he was up literally every hour with junky breathing and coughing. We re-started the medication this morning so we will just have to see how tonight goes.

Pre-sickness, Malachi has had a great week. He was so excited to go back to school on Monday and liked that we were back into a routine he understood and knew. Monday morning he and I went to a local organization to speak on behalf of the United Way. They distribute donated money to several organizations that Malachi is involved in (horse therapy, Boehm birth defects center, etc) so they sometimes call us when they need a guest speaker.

I absolutely love sharing Malachi’s testimony with people. His story is just so unique and powerful and I feel that when I look at him I am truly looking at a miracle. It is always a challenge when I have the opportunity to share his story with a non-Christ centered setting as I have to rely strictly on medical facts and statistics, leaving God out of the equation. My prayer is that those who need to see God through Malachi’s story will find it, even in those setting where I can’t directly point it out to them.

The soccer season has officially begun! For anyone new reading this, Jake and I are the high school girl’s soccer coaches in our county. While I would love to say that our sole motivation is our love for soccer (which does play a huge factor) we also have a practical side to holding this job as it is a paid position. Jake draws the head coach “salary” and I am able to draw as the assistant coach.

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Tuesday was our first big match day and the game was over an hour and a half away from home. We obviously take Malachi to every single one of the games and my mother usually accompanies us to sit with him while we coach. I hesitated going to this one, as we are on travel restrictions and are not to travel too far from the hospital, but this game happened to be in the direction of our emergency hospital if something goes wrong with baby Levi.

Malachi loves going to the games and hearing daddy and mommy yell on the sidelines. This week we learned that baby Levi loves it just as much as big brother! He spent most of the game jumping around like a wild man and kicking at my belly. His kicks have grown so strong that they startle me!

It is so much fun seeing a bond already between the two boys. When we are at home, I often play praise and worship music for Malachi. This week as I played the music Malachi would do his happy dance, but Levi would come to life inside me, seeming to almost dance to the music. Every time it made me smile as I thought about the other things these two boys would share over their lifetime.

While little Levi was dancing, I took Malachi’s hand and put it on my belly and talked to him about his baby brother. I explained to him that baby Levi “was in mommy’s tummy” and he just looked at me with wide eyes. We firmly believe that Malachi understands more than we credit him for, but I knew this was a foreign concept for him (as it would be with most 4 year olds). But for the next hour, every chance I verbally addressed Malachi he would take his little fist and pull up his shirt to show me his tummy. I don’t necessarily think that he made the connection ┬áby any means, but it was so fun seeing him try to relate to me about the tummies.

Malachi remained in good spirits even through his sickness but we kept him at the house for the remainder of the week. Yesterday evening we decided to venture out to give his brain some stimulation and went to a local restaurant to grab some dinner. After we finished eating I asked Malachi if he was ready to go home to which he swiftly made his “NO” face. Thinking it was a fluke, I asked him again and again he told me “No”. The third time I asked I got the same reply and I started to understand that he just wasn’t in the mood to sit at the house any longer! I asked him if he would rather go to the playground with his daddy and he abandoned his no face for a happy dance! Off to the playground we went!

I’m not going to lie- the tiny break that this sickness brought into our schedule was pretty refreshing. Having no appointments and no school to go to was nice, but I can definitely see that Malachi missed his busyness. He will get the chaos back this week as he will go back to school (Tuesday due to the eclipse), go to get fitted for his AFOs, attend horse therapy, and join momma on a Levi appointment. We will also have two away soccer games to go to in our evenings and will get back to all of our church activities with the youth.

Mommy is still attending school with Malachi for now. We may try this week to ease him into a routine where I leave him there for one hour, then two, then three, depending on the comfort level of the staff. I did leave him for one hour on Wednesday as a trial and they all seemed to do well during that time- even with Malachi having a medium seizure.

He even has his first school picture day on Wednesday! I am very curious how this will go with possibly impatient photographers. We prepped for the day with a haircut this weekend! And a side note- Malachi’s new nutritional drink seems to be helping him thicken up a bit.

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I have been working hard lately at getting back into God’s word, and let me tell you all…it has been so incredibly refreshing. I am reading passages I have read hundreds of times, and God is finding things in these passages that He wants to bring to my attention.

I have been going back and forth all week about which one to share with you all, and then a new one hit me this morning. We were talking about the story of Elijah in 1 Kings 17 and how God called him to go live by a brook in the desert. The Bible doesn’t tell us how long he stayed there but it does tell us that he drank from the brook and God commanded the ravens to bring him bread and meat every morning and every night.

I found myself dwelling on the provision of God we see in this story. I think about how loved Elijah must have felt each and every time God sent a creature of the earth to bring him nourishment. And then I think about the next part…”It happened after a while that the brook dried up…”

God didn’t warn Elijah that he was about to take away the life-sustaining source he had given him. He didn’t miraculously cause the brook to keep producing water, even though there was a drought in the land. Instead he commanded Elijah to go somewhere else, where he had other amazing plans in place for providing for him.

I think about what must have gone through Elijah’s mind in between the brook drying up and the command from God to go elsewhere.

As I read this story, I was reminded that in life there are seasons. There are times where we will be challenged greatly, and there are times of refreshing where we simply need to sit by the brook and lean on God to rejuvenate and take care of us. But it is in those moments by the brook that we often overlook the possibility of hardships in our lives. When they come back, they almost take us by surprise as life had been so comfortable and good for all that time. Then the brook dries up and we find ourselves needing to lean on God to direct the next path in our lives.

I feel that right now, the Carroll family is sitting by the brook. God is providing for us in ways that we can’t even see. He has met needs before they have become painful, and the momentum that we have right now is so refreshing. Malachi is making amazing progress and his health is improving immensely.

But I also have to remember that at some point, our brook may dry up and God will move us towards more challenges that test our faith. And I need to remind myself that that isn’t such a bad thing after all. Maybe God is leading us towards an even better brook that we can’t yet see. We may be required to cross a few deserts to get there, but that is all part of the journey he has mapped for our lives.

So for now, we will sit by the brook and marvel at his provision in our lives. Thank you God for the undeserved blessings on our family.

And a final note to end on…I am having way too much fun envisioning what little Levi is going to look like…I wouldn’t mind if he looked like his cute daddy…

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May God bless you this week,

Jake, Leah, and Malachi

 

We Have a Preschooler!

This week was monumental for our family as we took a huge leap into a new world…preschool! Malachi is not going to be attending school full time this year so our personal family goal is starting at just three hours a day from 10am-1pm. We simply want him to get to spend some time with other children and have something that is “his” to look forward to each day.

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I am attending school with Malachi for now until everyone working with him feels 100% comfortable and confident when caring for him. Malachi has been his normal quirky self giving them lots of exposure to his seizures and personality. All of the adults in the classroom have been ready and willing to learn, which is something that is so important to Jake and I. Sometimes in the special education world you can run into professionals with egos who aren’t willing to listen to your specific concerns about your specific child. Everyone we have talked to this week has been wonderful to work with.

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So what does Malachi think of school? He loves it! The concept of going there every day seems to still be sinking in, but when we talk about school and his friends he gets so excited! I took this sweet video at 6am Thursday morning:

The hidden benefit is that Malachi has been sleeping more soundly at night! I think all the activity is successfully tiring out his brain! His therapies will be started this week and we would really like to get him in some preschool inclusion (where he joins a class with other kids his age) during his day there as well.

Just for you curious folks, let me tell you a little about Malachi’s classroom. Malachi falls in the “severe and profound” category for special education which means he will spend his educational time in a Comprehensive Development Classroom (CDC). He is eligible to start school at three years old and remain in a CDC classroom until the age of 21. The tricky thing about CDC rooms is that they are a melting pot of disabilities and ages. Malachi’s classroom has a teacher, a Licensed Practical Nurse (LPN), and two paraprofessionals. Our goal is that each of the four adults in the room will become Malachi experts.

I want to make sure to protect the privacy of the other children in the classroom, so please understand that anytime I talk about his education I will be speaking in very broad terms! I would want the same respect from others!

By the end of the week both Malachi and I were absolutely exhausted. We spent most of Saturday staying in our pajamas and trying to regain some energy. Malachi got spent some time in his canoe watching Elmo and playing with his keyboard.

We also spent some time working on core strength and head control. This is always so hard for him, but lately he has shown us so much eagerness. He will always work for compliments, as you can see in this video haha!

Cognitively he has continued to amaze us this week. He listens to every word we say, a fact we sometimes forget. On Friday I was speaking with his therapist and I said the name “Jake” several times in the conversation. Malachi was listening in and started saying “Daddy” which absolutely blew me away! His ability to make connections is such a fun thing to watch.

Wednesday we went to see the high risk doctor to check on baby Levi. A little background…a few weeks ago I had some blood drawn to check levels. Unfortunately I got a phone call a week later that my Alpha-fetaprotein (AFP) came back a little elevated. High levels of AFP can point to neural tube defect like spina bifida or anencephaly, so that was the first thing to look at. We had already checked for these things in our last ultrasound, but they wanted to check again to be confident they had not missed anything.

Wednesday’s ultrasound verified that there was NO evidence of either of this neural tube defects, praise God. So what do the elevated levels mean? They can indicate placenta problems like preeclapmsia, IUGR and other growth disorders, or low amniotic fluid. With protein levels like mine, the protocol would be to start doing weekly ultrasounds at 30-32 weeks…that is already the game plan for us anyway so it doesn’t necessarily change my course of treatment but rather changes the things on our radar to watch for. They also are scheduling me more frequently with high risk to keep an even closer watch on things. We will be watching the babies growth VERY closely to make sure he continues to progress like he should.

As of now Levi is measuring 14 ounces, which is on target. Everything appears to be progressing as it should. We will be seeing our regular doctor in about a week and will see high risk again in two weeks.

Levi is still as wiggly as ever! He is kicking with such force these days that you can see the movements on my belly. We never got to see that with Malachi, so this has been extra-special to share with Jake.

Let’s do a brief flashback to a picture of little Malachi from three years ago:

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Jake and I have had so many conversations this week about how blessed we are to have Malachi in our lives. It is absolutely astounding how far he has progressed and all we can do is give glory to God. Seeing him comprehend so much is something we couldn’t even fathom just a few years ago.

As we prepare to move into our new home in a few weeks, we are starting to think about the type of environment we want to create in the brand new space. As we thought about every little detail, something that has continually come up in conversations is our mutual desire to cover our new home with God. We buried Bible verses under the foundation, spending time in prayer over each of the rooms that would be housed above it.

Something else that was pricking at my heart was making sure that our living environment would remind us to stay close to God. A few weeks ago we had a family member generously give us some money towards a housewarming gift and I knew EXACTLY what I wanted to spend it on! I waited patiently for Hobby Lobby to run its deals and this was the week!

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Our decor in the new home will be covering the walls in scripture. The Bible talks about hiding God’s word in our heart (Psalm 119:11), meditating on it day and night (Joshua 1:8), and using it as a lamp to our feet and a light unto our path (Psalm 119:105). My prayer is that these reminders of God’s word being visible on a daily basis will help us keep our eyes focused on Him.

Like we read in Matthew 14, Peter was able to do the impossible…to literally walk on the water…when he had his eyes and mind focused on Jesus Christ. When he allowed himself to be distracted by the wind and the storm around him, he began to sink below the surface. My prayer is that these scriptures will remind us to keep our eyes on Christ and away from the storms that may be brewing in our everyday.

Thank you for taking the time to check in. My biggest prayer need right now is for our pregnancy, that it will continue to progress as it should. We are in week 22…just steps away from the very important age of viability. Please continue to pray blessings over Levi!

God bless,

Jake, Leah, Malachi, and Levi Carroll

Semi-Trucks and School

At the end of every month I do what I call the “great calendar switch”. It is so incredibly refreshing to wipe our whiteboard calendar clean and erase all of the chaos and stress that the previous month held. For several minutes I just sit and stare at the clean calendar (weird, I know) before I start filling in the appointments for the current month.

As I began to fill out the calendar for August I started to realize how much our life is about to change. Malachi has seven standing appointments for therapies each week and starting this week he will now get those therapies (all but horse therapy) in school! No more 30 minute drives to town four days a week. No more back to back appointments that I have to pack coolers for. It is such an odd yet exciting feeling!

Tomorrow will be Malachi’s first day of school! I have officially completed the Malachi handbook and made enough copies for his teachers, aides, and therapists. I will be attending school with Malachi until the staff feels comfortable and confident and then we will try a solo run.

On Thursday evening we went to Malachi’s school for their open house. Mainly I wanted Jake to be able to see the classroom that he would be in and walk through the school to help put his mind at ease. One of the things I love about Jake is his very tender heart, and be loves his boy so much! As we got in the car to leave the open house he said “It’s a good thing you are taking him the first day because I don’t think I could do it without crying.” But the open house did put his mind at ease as he realized how many teachers we know at the school!

Malachi has had a great week! He worked hard in all of his therapies and had a wonderful session on the horse. His teacher took a video for me during his trotting, and unfortunately it isn’t the best quality, but listen to that giggle:

We also had a fun play date with some new friends we met through Facebook after the Chick-Fil-A post. Malachi seemed happy to be back into his life here in Tennessee and was ecstatic to go back to church this morning. He had a lot of big adventures this week like going to the river with the youth group and spending Saturday at the soccer field with the girl’s team.

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Jake went back to work this work and Malachi and I struggled to find our routine again. Tuesday was rough but by Wednesday Malachi seemed to understand a bit more that daddy was gone for the day and mommy and baby Levi need to sleep longer that 5 hours a day. He is still sleeping poorly, but after three wake ups I turn on Elmo and he lays in the bed with mommy while I catch another quick hour of sleep. Granted, Malachi spends that hour hitting my face and licking my neck in an attempt to wake me up but I am usually too tired to care haha!

Before we left Ohio on Monday we snapped a few pictures of the kids. Malachi’s interactions with Kaliber (my half brother) just warmed my heart so much this week and these pictures captured their special bond.

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Such sweet children! We kept Malachi forward facing in his car seat for the ride home and he enjoyed the change more than we ever imagined. He spent the first part of the drive looking out the window and the first time we passed a semi-truck we heard him yell “Daddddy, daddddyyyy, ahhhhhh” in a frantic tone. It was so wild to hear him call for his daddy in a scared voice, as we didn’t understand what had frightened him and he had never done that before. When we pieced together that it was the semi-truck we made sure to warn him before we passed another and make it an exciting thing instead of scary. Within the first hour it became a game and he spent the entire 6 hour drive staring out the window looking for trucks. When he would spot one he would squeal with joy, especially when we passed the large bright yellow Penske moving truck!

Baby Levi is continuing to grow and is very opinionated about how I lay in the bed at night. Right now as I type this he is kicking me so hard that it startles me every time, even though I know it is coming! I truly feel that God has given me a wild child to help calm my fears…there are so many times in a day that I worry about whether the baby is still alright, but when those fears creep in little Levi will always reassure me with a good kick to the abdomen.

Unfortunately I got a call this week from my regular obstetrician explaining that some of my blood work came back with slightly elevated protein levels so we will be double checking some things at this week’s appointment. But doc seems to think that if it were a big issue we would have spotted the signs/issues prior to now from other ultrasounds and tests so we are praying for a clean report. Yet another opportunity for me to focus on faith over fear.

Jake’s father could also use your prayers this week as he is going through a rather difficult time with this round of chemo.

I am going to be honest with you all…I have been neglecting my quiet time with God lately. I am so tempted to give you excuses like “Life has just been too busy”, or “There just isn’t enough time in my day”. But the truth of the matter is that I have not made the conscious effort to spend time in the Word. It is amazing how even a short break away from time with God can change your mood, thoughts, and behaviors.

So this week I am going to focus on making the conscious effort to make time for God. Make Him a priority above other things. Are any of you in the same boat as me and want to join in? Let’s stop making excuses and decide to focus on Him.

God bless you this week,

Jake, Leah, Malachi, and Levi Carroll