This Is The Way

Step by step. Day by day.

If you could see our calendar you would likely laugh out loud. Yes, it is full of appointments for the boys but it is also full with our other part time jobs (aka necessary income) as soccer coaches and youth pastors. There is a whole lot of color coding required for our whiteboard calendar haha. This week all of the roles we fill managed to collide in a messy and crazy way, but we came through mostly unscathed!

Honestly, Jake and I love both of these part time jobs even though it can be logistically challenging to do. We also feel so strongly in a solid work ethic and want to be able to give 100% to each and not allow child chaos to interfere with our ability to give each group our full attention. And so far the boys have always been up for the adventure!

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Sundays we get up bright and early and head to church.Yes, even when we are running on 3 hours of sleep. Church for us is not an obligation or something we want to check off the list. It is a much needed soul refresher for us as we get the chance to be around our Christian brothers and sisters and worship God together. What a blessing Sunday mornings can be if you allow them to.

A few Sundays a month I sing with the praise team which means Jake and I drive separate to church since I have to be there an hour early to practice. Yes, this is a challenge for us but we feel strongly that we are called to plug ourselves into our church body and serve where needed. We each take a kid and take on all medication, clothing, and feeding responsibilities for that kid. Sunday evenings we are back at church to teach the youth lesson.

Monday and Thursday mornings this summer we get up and head to the high school soccer field where we have optional open fields for the girls. We take the boys with us so we have to make sure everyone is medicated, fed, and changed before we leave.

Mondays we load up from soccer and head into town for Malachi’s horse therapy. This week we also had a dentist appointment for Malachi that afternoon. Then at 7pm I headed back into town to be a guest speaker at another church’s youth camp.

Tuesday morning we drive back into town to take Malachi to swim therapy which is immediately followed by Levi’s physical therapy. That afternoon I took the youth group to a local Christian concert from 5:30-midnight. Yikes that one was a challenge for my very tired mind!

Wednesday I hit the road to take Malachi to Vanderbilt- a trip that lasted about 13 hours total. We usually teach the youth on Wednesday evenings but had to find someone to fill the spot this week. Jake and Levi stayed home and had some good bonding time!

The rest of the week was manageable with pharmacy runs, insurance calls, and trying to catch up on housework. We went to a birthday party on Saturday at a local park and Malachi had so much fun playing on the swings and slides!

Crazy, yes. And this coming week is just as intense. Which is why we always focus on taking life day by day.

Now to move on to medical updates…

Dentist: Little known fact- Malachi only has one real tooth. He has had some major dental surgery done and all the other teeth are capped. We go in periodically to have them checked and everything still looks good. We call his one final real tooth his “accountability tooth” as we assume they left it to see if we as parents could keep it cavity free haha. We passed the test and are good to go for another 6 months.

Brushing his teeth is like trying to brush the teeth of an alligator. But we do the best we can.

Vanderbilt: Malachi sees a wonderful orthopedic surgeon at Vanderbilt. We trust this man very much and, just like I suspected, he mentioned that it was time for surgery. Malachi’s feet are turning out and up again. This is a byproduct of his brain damage- his brain is telling his tendons to pull tighter and it is starting to change the anatomy of his bone structure in his foot. Those bones don’t “permanently solidify” for a few more years so now is the time to do some molding and reconstructing.

In December we will be doing heel cord releases in both of Malachi’s feet and possibly in one of his hips. His hips are both 100% out of socket, another mis-communication from his brain to his tendons. The left hip is much higher than the right so while he is under we are considering trying to loosen that up a bit. Each surgery site will have to be cut open and each tendon cut and sewn back together. He will be in casts for about 4 weeks.

We have gone soooo long without a surgery for Malachi and I am so disappointed to hear that word again for him. But I also want to make sure that Malachi is comfortable and not in long term pain so I see the need for this one to happen.

The truth is, as Malachi’s life goes on he will continue to develop more issues with his health. While we have had a wonderful break from medical interventions for him, this appointment was my reality check.

Malachi was fitted for a scoliosis brace last visit and when we put it on him the pressure put him into some major seizures and projectile vomiting that lasted for 4 days. We decided we were done with that brace as it was not worth the brain sparks for him. I explained that to the surgeon this week and he understood our decision and supported it. Unfortunately his hips being out of socket are causing him to sit crooked, worsening his spine. It is something we are definitely trying to keep an eye on and will likely drive some major decisions in the near future regarding more surgeries.

Until December’s surgery comes Malachi is getting a break from his AFOs (leg braces). At this point they are doing more harm than good. So I went to Old Navy and let Malachi pick out some “big boy socks” and he was enthralled in the process. We got socks with bugs, sharks, stripes, and so much more. I give him two options every morning and he tells me which pair he wants to wear. When I put the first pair on him right after we bought them he was giddy with excitement and couldn’t stop giggling.

His little feet are so distorted and we always strive to preserve his dignity. When people look at Malachi we want them to see his beautiful smile and sparkling eyes and not be distracted by his physical differences. So until we straighten out those beautifully imperfect feet we will let him wear cool socks.

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We also ended the adventure with our annual trip to the Rainforest Cafe in Nashville. He has always enjoyed going there and listening to the jungle animals and noises. But this visit he was so engaged! He was making the noises back to the animals, roaring back at the tiger and screaming back to the elephants. I could see so much of a change in his imagination- it was really sweet to see. He also made some pretty amazing eye contact with me in the restaurant’s low light. That moment of recognition on his face always makes my heart flutter.

We have been working this week on spoon feeds and his communication device. I took this video to share with you:

We also played a whoooole lot this week. Malachi is re-discovering toys now that Levi wants to play with them. Yep- the jealous bug is still biting in our house. He also got to play with a special whistle rocket (a “big boy toy”) with daddy.

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He is all about being a big boy these days and getting to do things that Levi isn’t allowed to do yet. And he is still helping mommy babysit each morning. Such sweet boys.

Levi is still doing well! His personality is continuing to come out and he makes us laugh every day. He has a flirty smile he can flash at a moment’s notice and has been talking a lot this week. He is allowing me to hold him for longer periods of time, even up to 15 minutes!

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This week is a very big week for our boys. In addition to therapies, Malachi will see the neurosurgeon and Levi will see the neurologist. Malachi is also scheduled to get his new bath chair we have been so anxiously awaiting! Then on Thursday morning Levi and I will make the trip to Cincinnati and head straight to the hospital to meet with the pulmonologist who will be doing the bronchoscopy portion of Friday’s procedure. Our original plan was to take the whole family but we weren’t able to get a Ronald room for both nights and transporting gear multiple places in 48 hours sounds miserable, so Jake and Malachi will be staying in Tennessee. Levi and I will head to Children’s Friday morning to check in; it looks like his procedure will be around 11. We will stay that night in the hospital and our goal is to leave around breakfast time Saturday morning.

When we take him for these procedures we are never quite sure what they will find when they get in there. We are always asked to sign consent for several different medical procedures that they may decide to do after they see his airway. So he may need another supraglottoplasty (epiglottis trim), another balloon dilation, or maybe something new. We just won’t know until they get in to take a look.

This is operating room trip #20 for Levi. But it never gets easier.

As I mentioned earlier, this week I was given the opportunity to share a message with a group of teens from another church. Jake and I feel that God has given us a testimony that is meant to be shared, so when opportunities come our way we are so excited to get to share the things that God has done in our lives.

As I prepared what I wanted to share I thought back to my sophomore year of high school when the Lord used the book of Job to catch my attention. I had always thought the story of Job was very powerful but I remember reading the first few verses and my eyes were opened in new ways. I realized that Job was not only noticed by God, but God was pointing him out and bragging about him to the devil himself. As Job faced tragedy after tragedy he still praised the name of God. I remember reading that in high school and picturing the pride that must have beamed on God’s face as he watched Job praise him in spite of the devil’s attacks.

I remember being a young teenager and praying that I too would make God proud, regardless of any trials I went through. I prayed for a Job moment…a moment I would be tested….and I prayed that I would have the faith and strength needed to pass that test. I prayed that I would be able to be righteous just like Job.

And boy, oh boy, did I get my Job moment. Or should I say moments.

Whether or not I am passing that test, I won’t know until I see God face to face. But what a challenge it is to praise Him in the storm. I know many times I have failed. But I hope that my faith in some of those dark moments has given God something to smile about.

I have had a verse continually playing in my head over the last three days. I have no idea what sparked it into my brain, and honestly didn’t know the context until I took the time tonight to look it up.

It comes from Isaiah 30:

How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” 

There are a lot of things that spoke to me in this verse. God’s readiness and eagerness to comfort us when we are in need. The reminder that sometimes we are given adversity and affliction from the Lord…not as punishments but as opportunities to strengthen our faith and character. Like bread and water, these moments of affliction are necessary to strengthen us. But the biggest reminder for me in this verse comes from the last line…

Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” 

Jake and I walk daily down an unknown path. Often times that path is dark and we cannot see past the step we have just taken. We are called to a complete life of faith in God.

But this verse has brought me so much comfort this week, particularly as we have had to talk with surgeons for both of our precious boys.

No matter how dark our path may get, no matter how unknown the road will continue to be, God is with me. We face so many decisions and are pulled to the left and right by so many voices and opinions. But what a comfort we have in knowing that God’s voice will ring out louder than all the rest as He guides us. My prayer is that He continues to speak in such a commanding yet loving way and say “This is the way; walk in it.”

The New Testament references Christ as the Shepherd and us as the sheep. He says in John that “My sheep listen to my voice; I know them, and they follow me.”

But how many times do we drown out the voice of the Shepherd with our worry, our pride, our desire to control the situation, our false illusion that we know better,

When all it takes is listening for that voice of God. A voice that is ready and willing to guide us down a beautiful path that He has designed for us.

So as we take some big steps down our dark path this week I pray that I am able to drown out my fear and replace it with faith in the guidance of God. Faith over fear.

And I hope next week’s entry is full of good surgery reports!

Much love,

Leah

 

He Must Become Greater

Updates time! Every time I get ready to type a blog update I have to look back at the calendar to jog my memory about what we accomplished this week. We work on a day-to-day basis and once it gets checked off the list I tend to push it out of my brain to make room for more important things. But we managed to cram in a lot of activity over the last seven days.

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Malachi absolutely loved going to Vacation Bible School this week. We made sure to call it “VBS” instead of it’s formal name- we forgot a few times and his face lit up thinking he was going to get to go to school.

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Often when people look at Malachi they see him as a fragile little boy and don’t want to try too much with him. We always explain to people that he is very much a five year old boy who loves to talk about bodily functions (poop, farts, etc) and loves rough play. When water day at VBS rolled around I told them to soak him! They looked at me like I was joking, and I explained that we had prepped for the water and everything he was wearing and riding on could get wet. They sent me this video:

He made it 4 nights without having a single seizure at VBS and had just a short minute long one on the final day. At home he is only having about 2 a day which we are pleased with. He will go to the neurosurgeon next week and we will talk about these new seizure changes/types with him.

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We started summer therapies with both boys this week which kept us on the road Monday and Tuesday. Malachi had his first swim therapy lesson and he wasn’t so sure what to think. The whole concept seemed to confuse him but we think he will do better next week now that he has a frame of reference. Then immediately after Malachi’s water session, Levi had his first physical therapy session.

So far it seems that he is progressing at a decent pace. He isn’t too far off the mark as far as milestones go for his corrected age. This week he will hit 7 months old!

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We had a very frustrating appointment day this week that had me pretty riled up. A few weeks ago we met with Levi’s pulmonologist in Chattanooga for the first time since the NICU consult. That appointment went well- so well that he asked that I come back on one of his days off so we could talk about the different things the Cincinnati team had tried on Levi. He was so curious to learn about what worked and what didn’t for future patients. He said in exchange for me taking the time to walk him through the photos and videos he would type out a solid Complex Care Plan. A CCP would travel with us and anytime Levi unexpectedly ends up in the hospital it would be a step-by-step plan for his providers to follow as far as oxygen. It would prevent us from having to fight against intubation.

So Friday was the day of that appointment. Jake and I woke up bright and early at 6:45 and packed up the boys and headed to Chattanooga, a 1 hour drive from our home. As we drove I explained to Jake that this appointment shouldn’t take long and we could make a date of it! There were some “Escape” rooms close by that were willing to let Jake and I take the boys in as an anniversary date.

We got there early, as we usually try to do to make sure we are being respectful. We checked in and we waited. And waited. And waited. After an hour of sitting in the waiting room I stopped by the front desk to make sure we hadn’t been forgotten. She said that the doctor was running behind, which sounded odd since this was supposed to be his day off. When we scheduled it a few weeks ago they chose this day because he was off and “wanted to be able to devote a solid hour to talking with us. ”

After 30 more minutes of waiting the receptionist offered to have one of the other providers see us, since the one we were scheduled with was so far behind. I explained to her that the only reason we were here was at the request of that doctor and he had asked us to come in. This is when I started to get beyond frustrated. We were taken back to a room where the nurse explained that there were still two other patients ahead of us to see the doc.

I went back out to the front desk to ask if we did see the other provider if he would be able to give us the Complex Care Plan that the original doctor had typed out for Levi emergencies. While I was talking to the receptionist I noticed the doctor that we were so patiently waiting on was sitting in the back room behind the desk. Not seeing the two patients ahead of us. Just sitting.

I took a deep breath and tried to make up excuses for him in my head as the receptionist went back there to ask him about the Complex Care Plan. My imaginary excuses were WAY better than his real ones as he came to the front desk to apologize for running behind. He explained that he was a little mentally slow as he had just gotten back from his vacation in Europe and was jet lagged. He said that it would be fine for us to meet with his co-worker, to which I replied that the ONLY REASON WE WERE THERE was because he asked us to come in and meet with HIM on his day off when he would have time to talk to us?! He said that he decided since he was scheduled for us that he would go ahead and fill his schedule with other patients for the day.

Then the kicker comment came: “Well I have an appointment at noon anyway that I have to be at so I won’t be able to meet with you today.”

It was 11:45. We had been there since 9:30. I asked if we could at least get his complex care plan, to which he replied he had not done one.

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I don’t quite know how to explain my emotions; Levi’s face in the above picture is a pretty good summary. It wasn’t so much anger, but just a feeling of being so disrespected and not being able to do anything about it. As a special needs family, we have to get up hours before a typical family for an appointment like this. We have to pack oxygen tanks, feeding pumps, food bags, emergency kits, wheelchairs, bottles, medicines, and so much more in preparation for a day like this. I literally have to make checklists of things to make sure to pack for every possible scenario and the prep for an appointment day takes hours.

I asked the receptionist if we could be seen by the other provider and he came in within a few minutes. We started allll over with this man, explaining Levi’s Cincinnati history with him and trying to come up with a plan for him. This doc said he was willing to type up a Complex Care Plan for Levi and would be happy to take over his care as we explained we are DONE with the other guy.

Side note- the original doc was also the one who said he would contact Cincinnati for us while we were in the Chattanooga NICU…and he never did. Doc #2 is the one who actually followed through for us and helped facilitate the transfer to Cincinnati. We have a lot of respect for him and are happy that he is willing to take Levi’s case from Doc #1.

Okay, so why the long ranting and raving story? Frankly I just wanted to vent. To tell you the truth, there is usually always a story like this in each blog entry- but I usually end up deleting them as I see they did not serve a purpose. But I also know there are several medical friends that follow the blog and I want you to see a perspective from a special needs family in a situation like this. Unfortunately, appointment days like this are far too common. We have been forgotten in waiting rooms before, spent 4+ hours waiting to see doctors, and just been treated with so much disrespect. Yes, emergencies happen, and we have been the cause of others missing their scheduled doctor times due to our boy’s emergencies. But please understand how much time and effort goes into being on time to these appointments and if you only knew the sacrifices we have to make just to get there. A little empathy goes a long way in SN land.

By the time we left neither Jake or I felt like heading to our “Escape” room adventure so we changed plans and went out for an anniversary lunch instead. We don’t buy each other gifts, and in place try to make a memory. We hadn’t been to a “Fancy Restaurant” in years and thought we might be able to pull it off at lunchtime with the boys.

We went to an old favorite, J. Alexanders and as soon as we walked in (picture a wrecking ball of medical gear walking into a china shop) I felt out of place and embarrassed. I look at my drool stained top from snuggling Malachi, trying to keep him happy as we waited. And I just felt so unworthy of being in such a nice setting. Our lives are practical. Our lives are comfortable, in a chicken casserole southern way. Our lives are survival and combat gear. Our lives are unpredictable seizures. And our lives are filled with poop. Lots and lots of poop.

They led us to a table, and as they always do, everyone stared as we walked. I could feel my face turning red and I had to take a deep breath and remind myself that YES…we did in fact belong here. Jake and I are celebrating 10 years of a beautiful marriage. Our lives may not be comfortable and neat like the people eating at the tables around us, but we deserve to celebrate!

And it was delicious.

Our anniversary was actually on Thursday, but since we had a packed schedule we chose to celebrate on Friday when we would be in Chattanooga anyway. But we also felt like we couldn’t just ignore the day completely on Thursday so we went to a local arcade and spent an hour and $20 competing, Jake and Leah style. If you know us you are probably smiling right now. We are a very competitive couple and always have been. But it is all in good fun and we really had a blast. I think we are going to make that a new tradition for anniversaries. Can you imagine us as 80 year olds ski-balling it up?! We also went to a local restaurant Thursday night after the arcade and ate desserts for dinner.

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And for all you Rumpke the bear followers out there, he has not been back! He must have caught wind of our plan. We still assume he is coming every night and have the shotgun out and ready to go in case he returns. He hasn’t been by our house but has been over at the neighbors based on some prints he is leaving- some even on the side of their actual house next to the windows. YIKES!

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One of the things that I love the most about summer time is the amount of time Jake and I get to spend together. We have yet to run out of things to talk about, but one of the things I cherish the most is our conversations about God. I am so blessed to be married to someone that loves the Lord as much as I do. We talk about really deep things, and then sometimes we talk about useless things like what country Guinea Pigs are originally from (let me save you the time on Google and tell you that they were originally a food source in Peru and Bolivia…nasty huh).

But one of the more common things we talk about is the charge we have been given in raising these two boys.

This week I was reminded of a simple verse in John 3 and I read it with new eyes:

“He must become greater; I must become less.”

In it’s original context, this was spoken by John the Baptist in reference to Jesus. But I want to rewind a bit and take you back to before John the Baptist was even born.

In Luke 1 we read about Zecheriah and Elizabeth, two people that earned the adjective “righteous”. It also mentions that Elizabeth was unable to have children. One day while Zecheriah was in the temple he was visited by an angel. The Bible says:

13 But the angel said to him: “Do not be afraid,Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son, and you are to call him John. 14 He will be a joy and delight to you, and many will rejoice because of his birth, 15 for he will be great in the sight of the Lord. He is never to take wine or other fermented drink,and he will be filled with the Holy Spirit even before he is born. 16 He will bring back many of the people of Israel to the Lord their God. 17 And he will go on before the Lord, in the spirit and power of Elijah, to turn the hearts of the parents to their children and the disobedient to the wisdom of the righteous—to make ready a people prepared for the Lord.”

I remember reading these scriptures when I was pregnant with Levi and praying these over him. I prayed that he would be a joy and a delight to us and that people woudl rejoice because of his birth. I prayed that he would be great in the sight of the Lord. I prayed that God would choose to fill him with the Holy Spirit even before he was born. I prayed that he would bring people to God with the spirit and power of Elijah. And that he would prepare people’s hearts for the Lord.

So fast forward to that scripture this week: “He must become greater; I must become less.” I thought about the fact that, like John the Baptist, God has prepared each of us for specific tasks. Some of us find those tasks early in life. Some later. In John’s case, he knew that he had reached his task of preparing the way for the Lord, and stated “He must become greater; I must become less.”

I look back at our relationship and see all the ways that God prepared us for the task of raising Malachi and Levi. And as we dive into this new life as parents I find myself saying “He must become greater; WE must become less.” God’s presence in our family must grow greater, and our selfish tendencies must become less. As I thought more about these words from John I couldn’t help but see the beauty and contentment in them. He understood that he had been created for that moment…that task. And it brought him joy to do it.

I pray that God’s presence in our family only continues to grow greater, larger, and more enveloping. I pray that Jake and I are able to remove the selfish moments from our lives when we forget that this task we have been given is one that is so rich with beauty. What a gift we have been given to have two daily reminders that refocuses us and our priorities in life.

Please pray for safety this week as I take Malachi back to Vanderbilt to see the orthopedic surgeon. There have been so many negative changes in Malachi’s spine, feet, hips, and legs and I am afraid we are going to have some pretty intense conversations about the next steps. Next week we will be taking Levi back to Cincinnati so we will be covering lots of highway over the next two weeks. We also have a host of other appointments sprinkled in throughout the week to try to get through. Pray for health and strength for all four of us so we can be at our best.

Much love,

Leah

 

 

 

The Bear Necessities

As I type this update I am sitting next to the window in our bedroom. Tonight it “THE” night. If you have been following the blog the last few weeks you will know that we have a bear living close to the house. While we love that we live in a remote area with bears living close by, this particular one has been visiting the house almost every night for a few weeks. We have stopped putting trash in the cans but each night he comes up to check them anyway. We have moved the cans, tied them to the trailer, you name it, but still he comes and finds them.

He is just a little too close for comfort and simply eliminating his snacks (aka trash) has not deterred him from our front porch. The spot that he hangs out is out of sight from our door and we are very uncomfortable when we have to carry the boys in and out of the cars.

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Tonight we are transitioning to Plan B. We have put the shot gun and some bird shot by the back door and rigged the cans to make some noise when he messes with them. I put some old stinky egg salad into one of the cans to make sure to motivate him with the goal being to fire several shots into the air when he is messing with the cans. We are hoping he will attach fear with the trash cans and stop coming around. Let me make sure you all hear me say, we are not physically harming the bear! Just trying to spook it a bit.

We also put out some trail cameras so we could get some pictures of him tonight and then verify if he is coming back the rest of the week.

The thought of waking up from a dead sleep and having to grab, load, and fire a shotgun makes both Jake and I nervous (in a healthy fear kind of way) so we did some practice runs this afternoon while Malachi was at Vacation Bible School. We thought the loud noises might scare him too much.

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We will let you know how Plan B goes! I have a suspicion we may have a funny story for you next week.

I was talking to some friends this afternoon who follow the blog and they were laughing at all the crazy scenarios we find ourselves in. I feel like our life is so outlandish that it sounds like we are making things up…but be assured…all this nonsense legitimately happens to our little family. You can’t make this stuff up!

Okay now on to more updates.

Summertime sure is something special. I feel like a whole new woman this week as Jake has been able to consistently help daytime and nighttime with the boys. Sleep can be a magical thing!

While I am feeling rejuvenated with my 6-7 hours of sleep a night, it is taking its toll on Jake who was used to getting 8+ during the school year. Sleep deprivation can make you do some pretty silly things, and Jake’s week has been full of them. We are taking turns napping during the day and I feel like I am getting spoiled rotten with all this sleep. And highly amused by Jake’s antics.

We had some pretty bad storms this week which proved to be a bit of a reality check with the boys. The power went out late one night and we realized that we aren’t really set up for long term power outages with the boys. Levi’s oxygen concentrator turned off, alarming loudly so we were able to switch him over to some of the large oxygen tanks we keep on hand. His pulse oximeter machine and feeding pump had enough of a charge to stay running through the night so he was good to go.

We keep Malachi on a video monitor at night so we can hear and see when he has seizures and get to him quickly. The one we use has been on since the night we brought him home and the battery is no longer charging, so Jake slept on the floor of his room that night. All that to say, we can function for short periods of time without power but it really made us nervous thinking about a multi-day outage. Looks like it may be time for us to consider looking into generators.

This was our last week before summer therapies and appointments begin so we crammed in as much fun as possible for Malachi. On Monday he went to a friend’s house for a play date which was a much needed mommy session for me. We met these particular friends at one of his neurosurgery appointments and one of the twin boys has a shunt like Malachi. It is always refreshing to be around people who live the same type of life as you and have some of the same worries and fears.

Malachi also went for his first swim of the summer! If you are new to the blog, swimming is one of his all time favorite things to do. He wears a therapy neck ring and can swim independently- he is actually a really good swimmer and loves that he can do something without support from mommy and daddy.

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We have been working hard since we got home from Cincinnati to get some much needed things for Malachi through insurance. A little glimpse into the special needs world- for nearly all of his equipment (wheelchair, bath chair, activity chair, etc) he can only get a replacement every 3-4 years. So whatever you get requires lots of thought and research because you will be stuck with it for a long time!

Malachi has outgrown his bath chair so that was the first thing I attempted to get. His primary insurance said that it was a “comfort item” and refused to cover it since it is not medically necessary. Luckily his secondary insurance that he gets due to his disabilities picked up the bill. They usually cost $1,500-$2,000 so we are very thankful. It has been ordered and should be here next month.

The second thing we sought after was a special needs car seat. The one he uses now still works decently but his positioning in it is terrible. We always have to be on guard for things that will make his skeletal system, and mainly his spine, worse. Since we have to have the car seat for 3-4 years we did some major research and went for the fancy one. This one has a swivel base that allows it to turn to the door to load him in and out of it, saving some major twisting for him, and major back stress for me. It has speakers in the headrest (totally unnecessary but pretty awesome). Shockingly, his primary insurance approved it and the seat came in this week!

It does not have a 5 point harness so it functions more like a booster seat, requiring the seat belt in addition to the positioning straps. But my goodness what a difference it makes with how he sits. He is nearly at 90 degrees and his head is aligned at midline. It also has a tray that we can strap toys to for long rides. The swivel base did not come in yet but is on its way.

 

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As you can see, Malachi also got a much needed haircut this week!

The other victories with insurance this week is that they are now covering diapers for him. Praise the Lord! In addition to the diapers, we have also been able to justify them covering a high calorie nutritional drink that we give him once a day. These two victories will save Jake and I over $300 per month!

It makes me a little sad and a lot angry how difficult it is to get special needs children the things that they truly need. The mark up on items is astronomical and there is no way that we could even remotely come close to taking care of his needs without insurance. But even then, it takes hours upon hours on the phone and that can be a real challenge. And after all that work, insurance still denies quickly requiring several appeals.

But looking at the bright side, there are other people in this world that have gone through the red tape before us and have come up with tangible ways to help. There are so many grants available for special needs families, and while the application process can be intense it is definitely worth it in the long run. Many of the things we have for Malachi were denied by both insurance carriers and deemed not medically necessary but we were able to find grants willing to help us get it for him.

Malachi is getting to go to Vacation Bible School this week at church and really enjoyed the kick off this evening! He was still wild eyed with excitement when I went to pick him up.

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And an answer to prayer- Malachi’s seizures have lessened significantly this week, only having 1-2 a day. We are so thankful!

We are still battling jealousy a bit. He makes his “no face” when Jake talks to Levi, or gives Levi kisses. He is also finding ways to act out. When I got him out of his bath chair this week to carry over to the changing table I told him “Don’t pee on momma.” He immediately clenched down and sprayed pee at least 3 feet across the bathroom and then laughed hysterically. Very intentional, no doubt about it! He also bit Jake this week VERY hard leaving a nasty bruise.

Now on to Levi updates. He has changed in some big ways this week too. The biggest change is he has stopped vomiting. We have no idea why but we won’t complain. We also successfully made it out in public several times without him shooting fecal matter onto our clothing! Go Levi!

He continues to be quite the personality and he makes us smile with all his silly looks.

He loves to play with his toys. And he never stops moving. It is almost unbelievable how much this child moves.

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He is also discovering his voice, which is such a beautiful sound. I can’t get enough of it! I took a video this week so you could hear him:

I explained it on Facebook this week like this:

For his condition (bilateral vocal cord paralysis) you have to think about his voice quality and breathing ability as a combined 100%. In order to breathe at 80%, your voice quality is only at 20%. If we could get his vocal cords open enough for him to breathe at 100% without oxygen, he would not have a voice. So we are always searching for the best middle ground for both to function “just enough”. But we are very pleased with the combination that we are working with now!

This coming week things will transition back to craziness. Malachi and Levi will start their summertime therapy sessions and appointments. Next week we will have to go to Vanderbilt, and Cincinnati the week after that, amidst LOTS of other appointments. We also start summertime practices with our soccer team. If we can make it through June unscathed, July is looking like a breeze in comparison.

A friend gave me a very special and encouraging gift this week that I wanted to share with you all. It is such a good reminder that even though our arrows are crooked and one of a kind, there is beauty in that. What a blessing my crooked arrows have turned out to be. And boy, do they pierce the hearts of everyone they come into contact with.

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Jake and I are best friends. I am not being mushy and dramatic when I say that, but 100% sincere. When we met back in 2003 there was a fun connection between us and we both felt at ease being ourselves around each other.

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We quickly became friends, and that friendship blossomed into a dating relationship. We dated for 5 long years before we married, waiting until I had graduated college and got a job/had a steady means of financial support.

The stories from those 5 years of dating would have you laughing for hours. Our youth group loves to hear about all the silly and crazy things we got ourselves into!

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But even during those early years it was glaringly obvious and undeniable that God had brought us together. He intertwined our hearts in a very special way and God’s hand has been on us from day one.

This week we celebrate 10 years of marriage. As I look at the journey that God has brought us on with our children, I am increasingly thankful that He chose Jake for me to fight these battles alongside.

The Bible says in Proverbs: “Iron sharpeneth iron; so a man sharpeneth the countenance of his friend.”

Some days are tough. But it seems that in those particular days God makes certain that one of us stays strong to sharpen the other. I am so thankful that God prepared our hearts for one another.

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This week Jake and I have been talking about the beautiful life we live with our boys. We are so incredibly blessed- and we aren’t just saying that because it sounds like a good Christian thing to say. There is so much beauty in our lives and we feel so honored that God chose us for this task.

Who knew that those baby faced high school kids would have such a intricate path laid out ahead of them. Well, God knew. And He has ordered our steps from that very first moment our hearts connected.

Well, I think the bear is pulling a “tooth fairy” scheme and waiting for me to fall asleep before coming by for a visit. I better head to bed and get some sleep before our adventures begin.

Thank you for continually praying for my arrows. We get so weary, particularly in my prayer time. Knowing we have an army of prayer warriors standing in the gap lightens my load.

God bless,

Leah

Welcome To The Jungle

Have you ever been in a situation and the perfect song comes to mind that suits the moment perfectly? Over the last few weeks we have had a lot of these pop into our heads. For example, when we are at the house and someone comes over I can’t help but hum “Welcome To The Jungle”. Or when we go out in public with both boys and all their gear in our heads we hear “They came in like a wrecking ball…”

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While we are slowly mastering the art of managing both boys and their extensive needs in public, it is definitely still a challenge. But we are the Carrolls and apparently love a good challenge, as life has worked hard to show us, so we are trying to not let it interrupt our lives. Jake’s last day of school was this week and to celebrate we went to the local Mexican restaurant.

Let me side note here and tell you that these last two weeks I have reached a level of exhaustion that I have never known existed. For the last five years I have had to function on very little sleep, but adding in the mental work required to take care of both of these boys is wearing me out.

On this particular day I was feeling that exhaustion and actually contemplated sleeping in the car for the 6 minute drive to the restaurant. We tromped in, turning heads as we always do, and settled into a booth. I was secretly doing a happy dance inside as Jake sat down next to Levi- he is the more high maintenance one these days.

Before we even ordered Malachi set off into a 3 minute seizure which results in him filling his diaper. When these seizures hit we do our best to preserve his dignity as much as possible and hide the fact that he is seizing. We cover his eyes and try to keep him from clawing his face in the process. We got him through that one and shortly after we ordered he went straight into another 2 minute one. Jake and I contemplated leaving, but had already ordered food so we stayed. Malachi LOVES going out and we didn’t want him to feel like he was being punished for his brain’s choices.

Then it was Levi’s turn. Little Levi started screaming uncontrollably. We tried rocking him in his car seat, distracting with toys, and nothing was working. We were feeling the burning eyes of the other customers so Jake decided to get him out of the car seat and try holding him. While he calmed down a bit he was still pretty fussy so Jake bounced him in his hands until our food arrived.

As Jake was putting him back into the car seat I spotted it…Levi had apparently filled his diaper and all that “bouncing” had “relocated” it alllllll over Jake. Jake didn’t know this yet and grabbed his silverware like nothing had happened. We still had eyes on us since our child was losing his mind, so I mouthed to Jake to look at his shirt. He said “hand me the diaper bag so I can get the wipes” and as I went to grab it I realized that it had been left at home.

Yup. Here we were, trying our hardest to enjoy a normal night out and pretend to be a typical family. And in the course of 15 minutes, 3 out of the 4 of us smelled like poop. One boy was still screaming uncontrollably, the other was laughing at his maniac brother. And Jake was still just covered with poop. And then there was me- waving the white flag and asking for our check. We surrender! So we snuck out the door as sneakily as a poop covered dad, five year old in a wheelchair, screaming baby covered in poo with oxygen and a feeding pump, and a mom who hadn’t showered or slept for three days could possibly sneak.

These are the moments we have to choose to laugh at. I told Jake we were going to try a re-do dinner another night, and I am happy to report that the other attempt went wonderfully.

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Speaking of chaos, our bear friend has been back four of the last six nights. We have officially named him Rumpke, as he loves to take our trash bags back to his den. We found his path and it goes right under my bedroom window so I opened the blinds, ready to catch him in the act. I laid down and within 30 minutes I heard a boom. I jumped up and ran to the window and there he was about 8 feet from me. We had walls and windows between us but seeing him that close and that huge made my blood run cold. I watched him open the trashcan and choose a bag and head back towards the tree line.

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Jake sleeps in the guest bedroom (more on that later) so I ran over and woke him up and we took a spotlight out onto the back porch to see if we could spot him. By that time he was already out of sight but we could hear him thoroughly enjoying our trash. When the light got near him he scrambled up a tree and we couldn’t see him.

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His front paws are a little smaller than my hand. But his back paws are much larger!

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I told Jake to go upright the trash cans so I could hear him if he came back and after some major convincing he darted out and flipped them back up for me. At that point I was officially wide awake and knew he would be back so I sat by the window and waited. Malachi ended up waking up so I went and got him out of bed and we sat and waited together with Levi sleeping soundly behind us. Sure enough here comes Rumpke the bear, wandering up to the house. He got about 10 feet from the window so I thought I would try to scare him off and hit the window hard and loud with my fist. Instead of scurrying off he just turned and stared right at me.

Talk about FREAKY. So there I sat, staring face to face with the bear. I hit the window again and he took one step back but still wasn’t convinced to run. In a last ditch effort I hit the window hard several times in a row and he ran about 10 steps away and laid down flat. I think he thought he was hidden but he is dark as night so I could still see right where he was at.

At this point Malachi was crying, as he didn’t understand why I was beating the window and he totally feeds off of my emotions. I am confidence he sensed I was nervous. I ran across the hall and got Jake back up and we ran out on the back deck (don’t stress- it is 12 feet in the air and has no stairs- yes, we know bears can climb but I knew right where this one was “hiding”) and we shined the light right on him. He panicked and headed for the tree line and crouched down in three feet of grass. We could still see him clearly and kept the light on him, not quite sure what to do next. Then he stood up on his hind legs and stared at us. We stared back at him, neither of us quite knowing what to do next. He is about the height of Jake and seeing an animal that size is just crazy. After our 30 second stare off he ran into the woods and disappeared.

Our next plan is to set off the car alarm when he gets next to it, but I haven’t been able to catch him in the act since that night. Plan B will be a bird shot in the shotgun (in the air, not at him) and if that doesn’t work we will have to go to Plan C and have the local wildlife professionals trap him and release him in the mountains.

Malachi had his last day of school and his sweet teachers cried as I drove away. We were truly blessed to have such caring people for his first year at school. They gladly accepted the challenge of learning Malachi and I confidently believe that they love my son. They asked about meeting up with him this summer and possibly babysitting for us. Jake and I are coming up on our 10 year anniversary next week and we may just attempt a seizure free/poop free/screaming free dinner out. Maybe.

I have been trying to help Malachi understand the concept of summertime and how school is out for a few months. I am hoping having Jake home will help take his mind off of things.

Levi’s personality is changing daily it seems. He is hilarious. His stridor is still there but it is quieter than before. When he is awake he is holding strong with his oxygen saturation but when he is asleep he definitely still needs the support. He has torn his cannula off several nights this week and I can tell by his dip in his oxygen sats. He only dips down to 90-93 but that is still too low for my comfort.

 

He seriously never stops moving. I never knew babies could be so active! In this video Levi shows you how insanely flexible he is. He loves to put his feet in his mouth:

 

This week we held the soccer banquet for the high school boys. I sat with the kids while Jake presented awards and every time the audience would clap Levi would get scared and start crying. Malachi on the other hand would laugh hysterically. Every thirty seconds they would clap for another player that was recognized and the cycle would continue all over again. By the end he seemed to understand the concept a bit more but the learning process was definitely a journey haha.

Malachi is continuing to have some pretty nasty seizures throughout the day, but otherwise has had a pretty great week. Last night he slept in his bed for 7 hours straight! That is HUGE! We had friends from high school stay with us this weekend and the activity in the house must have just plum worn him out. We took them to the river where Malachi got to dip his toes into the very cold water. He also got to go to the playground and swing with daddy.

Today is a pretty special day as it marks the anniversary of the day we brought Malachi home from the hospital after 112 days! What a whirlwind of emotions that day proved to be.

I can’t believe how much he has changed over the last two years! Look at these pictures from two years ago:

 

And then here are some from this week:

 

And yes, he got to ride the horse while on his belly this week! And he absolutely loved it. And yes, he is still wearing those same clothes from two years ago haha.

Now that Jake is finished with school for the summer we are officially both back in the same bedroom at night! Being a special needs parent statistically increases the divorce rate (some sources say it is as high as 80%). Jake and I are very aware of this statistic and we are trying to guard our marriage from any unwanted attacks.

To be honest, I can absolutely see how having a child like Malachi can devastate a marriage. Our life is physically, emotionally, financially, and mentally exhausting. We are both the heaviest we have ever been, the most exhausted we have ever been, the most depleted we have ever been and we have no time or energy to remedy these things. But we know that the devil can sniff out weakness easily and uses it to step into our lives so we are guarded.

But even having him back in the bed seems like a huge victory. Yes, he still snores and yes, he somehow managed to steal a king sized comforter from me that first night but it is worth it! Friday night was the first night in the same bed since the night before Levi was born in November…process that…so crazy!

These last few weeks have been challenging for our county. The education system suffered some major cuts and the county had to eliminate 17 teachers in 5 schools. As the days went by we heard more details about where the cuts would happen and 3 of them were going to be from Jake’s school. Then we got word that 1 of those cuts would likely be a math teacher.

As we waited for the cuts to happen Jake and I talked about the possibility of him losing his job- and more importantly for our family, his insurance. Our initial reaction was panic and fear. We have watched our plans unravel over the last few years, but have always had a stable income and insurance source.

But then we started to really process the things that God has carried us through over the last five years. And when we remembered that His beautiful hand of protection is on our family, we were both covered in peace.

Last week I talked about a verse in Philippians 4 that has become a focal point for our family. This week I want to back up a few verses from that one and point you toward Philippians 4:4-7:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

The peace of God is such a special thing. It truly doesn’t make any sense. There are situations and circumstances in our lives that we could spend every waking minute focusing on. If your mind is anything like mind, it always settles on the “worst case scenario” making me a bundle of nerves.

But like this verse says, it is the peace of God that guards our hearts and minds. It overwhelms you when it hits you in a wonderful way.

So this week we are thankful for God and his beautiful gift of peace.

Jake was not let go this week. But if he had been, I am confident that God would have already mapped out a different path for us and gladly guided us down it. A relationship with God is such a comforting thing and I am so thankful for His hand in our lives.

May God overwhelm you with His peace this week in whatever unknown you may be facing.

Much love,

Leah

 

Bears, Barnwood, and Boats

Our little family had a week packed full of adventure!

 

Yes- therapies, doctor’s appointments, and chaos all took place this week but there are no noteworthy updates there. Malachi’s seizures are still changing significantly and have started to last 2-4 minutes each. Because of this change we are watching him closely, as seizure changes can indicate a shunt malfunction. He had a few at school this week so I am making sure to stay within a close driving distance so I can be there quickly in case of emergency.

Here is a video of silly Malachi playing with a whoopie cushion; at the end you get a glimpse of some of his sign language as he signs with his right arm for “more”:

Levi is still doing amazingly well with no new issues or changes. He is growing like a champ and looking so healthy. The biggest change we have noticed this week is his long legs.

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He really enjoyed watching Malachi at his horseback therapy this week.

 

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So instead I will fill this entry with some stories from our week.

Let’s start out with the most recent one: we had a visit from a bear! On the weekends we each pick a kid for the night. Jake inevitably picks Malachi as he is the predictable one, waking up at 3:30 each morning for a few hours. Levi is the wildcard and you never know what the night will hold with him. Jake and Malachi ended up in the guest bedroom and Levi and I settled into the master.

We have sound machines in every room, but over the white noise I could hear something loud. I thought maybe it was my imagination so I got up to turn off the sound machine and drifted back off to sleep. Throughout the next several hours I kept getting jolted awake by new noises but I was just so tired I didn’t really care enough to investigate.

This morning we reconvened back into the living room and I told Jake that either there was a serial killer living in our basement or there was an animal outside all night. He went to check the basement and I went to check the porch where I discovered muddy bear prints all over. It had gone after our trash, wheeling the can successfully about 50 feet from the house before it tipped onto its side, which would have been hilarious to witness! He then tried to open the can by clawing and biting it but was unsuccessful. He went back up to the house, flipped open the lid to the second can and strategically took all four trash bags inside. Literally took them- they were nowhere to be found this morning. No sign of trash anywhere!

In this picture you can see the round paw prints on the concrete.

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After church it only took us a half a second to find his path into the woods- he must have been an extremely big bear and mashed all the vegetation in his 3 foot wide path. Jake went back there a ways and found one of the bags but didn’t want to venture too much further in search of the others for fear the bear was still close by.

We live in a rural area that doesn’t have trash pick up so each weekend Jake has to haul it to the local dump. Yesterday he didn’t get the chance to so his plan was to take it on Monday. Oops.

Malachi thought is was absolutely hilarious when I told him that a bear snuck off with all of his poopy diapers.

The boys also had a play date yesterday with the kids of one of our friends from college! There is a wonderful handicap accessible park a short drive from us and Malachi loved playing on it with daddy. He still hates the sun with a passion but this playground has built in sun shades over it so it wasn’t so bad.

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Levi is getting more curious and is starting to see that being held means he gets to see more things. This week he has wanted to be carried all around the house, exploring as he goes. And while he is still definitely a momma’s boy, he is starting to tolerate his crazy dad a bit more.

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But we aren’t too fond of brother’s swing:

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On Monday Malachi had a pretty large seizure at school so I went ahead and picked him up early to evaluate if he should go to his horse therapy session. When Tuesday rolled around I decided it was best to keep both boys with me all day, as we were signed up to help chaperone Jake’s field trip to the river. And what an adventure that turned out to be!

For the end of the year project in his Algebra 2 classes, Jake had the students work in groups of 4 and design a boat. They had to use mathematical principles to determine the buoyancy force and see how large it would need to be to hold the weight of two people from the group. There was lots of math involved in the project but I won’t bore you with all that info.

The final step was that they had to actually build the boat using cardboard and duct tape…and then float it down the river. Yes, you heard that right! There were lots of rules, one of which was that they could only put duct tape on the seams where two pieces of cardboard came together. We were all cautiously expecting the project to be a bust and none of the boats to float but we were shocked when 7 of the 11 floated at least 100 yards, some going as far as 1,600 yards! We had so much fun watching the students trial their creations.

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The day was a huge success and Jake plans to do this project for each of his Algebra 2 classes in the future. We dubbed it “The Redneck Regatta”.

After the Redneck Regatta we went for a quick stop at the local Mennonite community to buy some fresh bread and fruit.

After spending so many months in the hospital, my soul has been absolutely refreshed getting to spend these last few months back in our community. There is so much beauty and simplicity in our life, and I love every aspect of it. Bears and all haha.

Just to recap, Jake and I moved into our new Malachi inspired accessible home in October. And then Levi came in November! I had not even had the chance to unpack all of our boxes and get settled into the new house before I disappeared to Cincinnati for 4.5 months.

My original plan was to work on unpacking and tackling miscellaneous projects during those first few weeks after Levi’s “typical” birth. When that didn’t pan out like expected I was so disappointed. Now that we are home and finding routines I have been able to carve out some time to complete some of those projects.

This one has been in my mind for quite some time, and yesterday we finally finished it.

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It turned out beautifully and way more massive than the picture in my mind. It is 9 feet from the top board to the bottom board and over 10 feet wide! But I absolutely love it for so many reasons.

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I posted a photo of it on Facebook today with these words:

When Jake and I were given the opportunity to build a house we spent a lot of time in prayer over our decisions. One thing we both felt strongly about was saturating it with scripture- we want the presence of God to surround our family, and having His words visible refocuses (and sometimes convicts) us each day. We chose a scripture for every room and buried it in the foundation beneath each one, and when the house was finished we decorated the walls with God’s word.

But THIS VERSE is one we rely on each and every day of our lives. There is a lot of ugly in our lives. A lot of sadness, a lot of disappointment, a lot of suffering. But there is also SO much beauty. And by the grace of God, that beauty seems to always outshine the bad when we choose to focus on it.

Boasting can be a slippery slope, so it is one we try hard to avoid. But we will never stop telling you about the praiseworthy and excellent things God continues to do in our family. To Him be the glory.

Our mind is a battlefield and the devil knows how to navigate it well. The Bible tells us to carry the “sword of the spirit” which is the word of God. These are more than just words- they bring strength, courage, and confidence as we fight our battles.

My prayer is that both of my boys grow up hearing and seeing such life giving words and start to hide them in their hearts. What you hide in your heart will impact your thoughts more than you ever realize.

Looking for a good place to start? Check out Philippians 4 where this verse came from! 

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Yes, it is obnoxiously large but that is exactly the daily reminder I need to focus on the good parts of our life. I hope that this verse takes on a meaning that is unique to you and your situation this week. That is one of the things I love about scripture…the same words can bring so much hope and encouragement to so many different situations.

So nothing too earth shattering in this blog update, but I see that as such a blessing!

One final side note- our porch plan has been working out well for rainy days. We tried it out for the first time this week during a crazy rain storm and it worked perfectly at keeping the boys dry. It is so much fun to see our design visions come to life!

Thank you for checking in on our sweet boys. We are trying to enjoy these slower days, as June holds lots of traveling for medical appointments. Please continue to pray for a complete healing for both boys, and particularly that God restores Malachi’s brain and his seizure come to a halt entirely.

Much love,

Leah

 

Motherhood

Look who made the front page this week! The article was so kind and complimentary of the way Jake has carried himself through our difficult few months. Here is an excerpt from the article:

“Throughout these troubling times, the class noted how Carroll would teach his class all week, then travel to Cincinnati to be with his family in a special hospital for Levi until Sunday, when he would return home and begin his week anew. ‘We’d see him coming down the hallway just smiling, you’d never have known that he had anything going on in his life,’ Stewart said. ‘When we found out, we knew where we wanted the money to go.'”

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When I read the article I told Jake that he was going to cry when he read it. He rolled his eyes at me and laughed, saying there was no way a newspaper article would make him cry.

He was wrong. We both teared up as we read it. It was so wonderful to hear that the way Jake carried himself through our challenges was noticed by the teenagers. I hope that like a pebble thrown into the water, these teens will remember that bad times don’t always have to break you…especially when you walk with the Lord.

Oh what an adventure filled week Malachi has had! This video is sure to put a smile on your face:

Malachi’s field trip on Tuesday was a big success; he was so excited when we got there and heard all of his friends and teachers. Just like I promised him, I dropped him off and left to give him a little independence.

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His teachers said he did great and did not have a single seizure the entire field trip. Usually new environments and lots of stimulation can bring those on so this was very surprising.

Side note- his seizures have changed a bit lately. Malachi has intractable epilepsy which means they fail to be controlled. His brain is extremely globally damaged (which means the damage is all over and not in one specific area) so he has several different seizure types. These days instead of throwing his arms outwards during a seizure he is bringing them inward and claws at his face in the process. He isn’t doing it on purpose, but when his brain panics his muscles all start to contract. It is making me a nervous wreck as he is getting dangerously close to his eyes. His grip during these episodes is incredibly strong and even I can’t pry open his fingers when they grasp on to something.

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I couldn’t decide what to do with myself and Levi while we waited, then I remembered that I had a Red Lobster gift card in my wallet! Score! I had a wave of confidence and off to Red Lobster we went. Needless to say the lunch was a nightmare haha. I forget how loud Levi is when he breathes as I have grown used to it. Red Lobster is a quiet place so we stuck out like a sore thumb.

Feeling self conscious, I ordered my food immediately when we sat down so we could get out of there quickly and not disturb anyone else’s meal. And let me just say…it is a good thing I did as the meal continued to spiral out of control. Levi projectile vomited twice, sounding like a choking baby dinosaur each time which only drew more attention. Then he decided to loudly fill his diaper and at that point I realized that we needed to be done.

I think I set the record getting in and out of Red Lobster and consuming a full meal in under 17 minutes. I am pretty confident the restaurant was glad to see us go. Oh well- we tried haha!

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Well it looks like the jealous bug has officially bit Malachi. This week we are seeing some typical behaviors for a five-year-old first time big bro. If Levi is getting some extra attention Malachi will start crying until we show him some attention too. I have been trying my best to dote on both boys equally but it still hurts Malachi’s feelings when I focus on Levi.

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To combat this, I have been trying to give Malachi more responsibilities as big brother, like “watching” Levi when I have to go into another room briefly. Malachi thinks he is pretty big stuff when this happens. Maybe too big for his britches as once again he flung himself out of his seat and onto the floor this week. It nearly gives me a heart attack every time!

I took a few videos for you so you can see their sweet interactions. The first one was when I asked Malachi to show Levi how to play:

And this second video is just too sweet not to share. I let Levi sit on Malachi’s lap and he snuggled right into him. Malachi was so gentle and even brought his arms up to hold Levi:

We also had a little excitement at school this week. I went to pick Malachi up and his teacher told me that a bear walked up to the fenced in playground and started scratching its back on the fence! Just another day in the country.

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I have been tackling my incredibly long to-do list. I have been devoting a few hours each day to making phone calls to insurance, specialists, and other medical related organizations to try to get the best services and care that I can for each boy. I took this screenshot and sent it to Jake when he asked what we had been doing all day. On this particular day, the phone calls continued until 5:30 that afternoon.

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I took Levi for an evaluation with Malachi’s physical therapist so he can start PT this summer. She was pleasantly surprised with how on target he seems to be, which was music to my ears. I also met with Early Intervention Services this week to set up a care plan for him. We have been able to get a really great feeding therapist to take his case and I am so eager to start those sessions and get him eating by mouth.

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Levi is changing by the day! He will be 6 months old tomorrow which is so hard to believe. He has turned into quite the momma’s boy which makes me so happy. He does silly things these days, and smiles a lot. He is starting to want to be held often (by mommy only) and he loves his toys! The toys seem to create the most jealous moments for Malachi so I don’t let him play with Malachi’s favorites unless he is at school. Levi is also putting everything he can into his mouth.

Today is Mother’s Day here in America (we have a lot of international followers). Jake and I are fuddle duds who don’t celebrate many holidays so we aren’t doing anything super special- my gift is a nice long nap as soon as I finish this entry.

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But last night I started processing the term “Motherhood”.

Motherhood has always looked so different for me. The first time I saw both of my boys was on the screen of a digital camera. It was 3 long days before I got to meet Malachi, and while I did get to meet Levi before he was transferred, it was two days before I got to visit him. I will never forget those nights in the hospital for both boys. I laid in bed listening to babies crying and being comforted by their mothers. I heard the voices of visitors gushing over the newborns in the rooms around me. Yet there I was, alone and childless. My plunge into motherhood left me feeling very desperate, alone, and unworthy. Just a shell of a mother with no child to prove that I had in fact given birth.

Motherhood for me means I have to sign countless medical releases to allow doctors to poke, prod, heal, and fix my children, knowing the painful state they will be in after. And I have to be their voice. I have to think through worst case scenarios and research to make educated decisions for their care.

Motherhood for me means that I have not only watched but held down my children as nurses have attempted to get hundreds of IVs, intubations, and blood draws. I have had allow them to inflict pain on my children, pleading desperately with God that in the long run we will see the benefit. This is the hard stuff of motherhood…this is the type of motherhood I don’t wish on anyone else.

Motherhood for me means I have to helplessly watch Malachi be overtaken by seizures that scare him but have to keep myself calm so he senses peace when he comes out of them. It also means I obsessively watch every movement for Levi, terrified that he too will develop epilepsy. Motherhood for me means always being aware of SUDEP (sudden unexpected death in epilepsy) and waking up several times a night to make sure he is still breathing.

Motherhood for me is equated with fighting. It is desperately trying to get others to see the strength and potential in my boys. To see their worth. To share the hope that I have for each of them. Mothers shouldn’t have to fight this hard.

Motherhood for me is a sea of emotions. Every day I fight temptations of depression, grieving, and loss. But I know that giving into those emotions will only hurt my ability to care for my children, so I have to find ways to stuff those emotions out of my thoughts and focus on the good.

Motherhood for me is laying in bed at night thinking about the unknown. The questions marks, the what if’s, the variables that could go wrong at any moment. I think about future surgeries, future hospital stays, future bad news, future emergencies. And while I want to prepare my heart for them, I just don’t think I will ever be able to adequately do so. So I simply have to swallow the lump in my throat and focus on better things.

Motherhood for me means a constant, daily, reliance on God. Because I simply cannot do this alone. The task is just too large for me to do apart from Christ.

Motherhood can take on different shapes and forms for each individual person. Sometimes I get hit with pangs of jealousy, just like my Malachi, as I watch how simple motherhood can be for others. Oh to have only the good and fun parts, and not have to worry about the bad.

But there is a quote that kept coming to mind this week:

“Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding he is exactly the person he’s supposed to be. And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.”   – The Water Giver

Paul tells us in Philippians:

“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.”

As I read these words this week I found myself struck by the honesty of his words. It is so easy to find discontentment in our lives. It is so incredibly easy to find things to whine about, things to mourn over…and let me say that there is a time and a place when those moments of mourning are completely necessary and acceptable.

But there is also something so refreshing and healthy about choosing to be content. And relying on Christ to give you the strength to find and cling to that contentment.

Motherhood to me means finding contentment and happiness peeking in through the storms. It means looking past the ugly, the difficult, and the hard and straining my eyes to find the lovely. And to not just find it, but celebrate it.

Whatever motherhood may look like to you, I pray that you are able to find contentment in it. I pray that you are always able to choose joy. And I pray that you are able to see the truth in the words “I can do all things through Christ that gives me strength.” May that nugget of truth drive you during the hard times.

Please continue to pray miracles over my sons. We are continuing to believe that God will heal them both, and what a glorious day that will be!

God bless,

Leah

Just Wash Their Feet

This week we broke one of our big rules and took BOTH boys to Jake’s school. Schools are germ factories so we avoid them at all costs. Yes, Malachi does go to school but he stays quarantined in his classroom all day and only goes for limited chunks. When I told Malachi that we were going to go to “daddy’s school” I could see the wheels turning in his little brain, trying to figure out what I meant.

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One of the business management classes at the high school had the challenge of creating a product to produce, market, and sell. They had the option to split the profits among themselves or donate them to a special cause, and as a class they voted to donate them to our boys. What a selfless and amazing thing!

Jake mentioned to me a few weeks ago that they wanted us to come in so they could present us with a check. I asked him if it was going to be a “big deal” and he said it was super casual and he thought it was simply a pizza party in the classroom.

Jake is not a “details” guy.

When Levi, Malachi, and I arrived we were taken to the stage in the cafeteria where news reporters were present, ready to capture the check presentation on camera. Members of the community had come out as well, including the gentleman who had organized Jake’s Angel Flight.

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If you know me personally you will smile as you read this, knowing how awkward I get in the spotlight. During the all-eyes-on-me moments I overthink everything I do and this was no exception haha. Like when we filmed the Chick-Fil-A reunion last summer all I could think about through the meal was “What is the proper way to eat a waffle fry…one big bite, tear it into pieces…?” I am undeniably an overthinker. But beyond the awkwardness, it was such a wonderful sentiment for those young adults to make such a sacrificial decision.

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Jake and I are continually blown away by the support we receive. People use the word “humbled” in situations like these, and that is by far the best adjective I can think of. Humbled and blessed.

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This picture was taken right before my loving husband turned to me and nodded for me to give an impromptu speech. Thanks dear haha.

The rest of the week went relatively smoothly. Lots of fights with insurance, lots of phone calls, oxygen tank swaps, horseback therapy, pharmacy runs, and other mundane but busying tasks.

Malachi had a wonderful week at school. I love getting pictures throughout the day.

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This week they will be going on a field trip to the aquarium! Malachi loves the independence school brings so Levi and I are going to drive him there (about an hour away) and let him walk around with his classmates without us. He is so excited!

This week I put him in a shirt that said “Big Bro Malachi”. When I read it to him and showed him the words on his shirt he was so proud. Every time someone would read it he would puff out his chest proudly.

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I have been trying to sort out our schedule for the summer and what it is going to look like for both boys. I am not going to lie- it is going to be pretty intense and crazy. We have trips to Vanderbilt, trips to Cincinnati, specialist appointments, youth camp, and weekly therapies for both boys. It is overwhelming to think about.

But these boys are worth it. They lay on the play mat together every day after school and just stare at each other, smiling sweetly.

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Other highlights from our week include play dates with friends and lots of time on the swing!

And of course, watching the sunset…that one never gets old.

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Levi woke up this morning coughing so we have been on high alert making sure he isn’t getting sick. We are leaning towards it being allergies but are a little nervous either way. Every time he starts coughing it triggers his gag reflex and he vomits. We are very worried about aspiration as his vocal cords aren’t able to protect his airway as well as everyone else.

Please keep him in your prayers.

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Nights have been exceptionally tough for me lately. We have been approved for nursing hours for Levi but can’t find a provider that will come out to our area. Last night I tallied how many times I got up with Levi and it was 15. And that was a night with just him. Jake takes Malachi duty on the weekends. When I have Malachi that number increases significantly and we get up for a few hours at 3:30 every morning, as dictated by his seizures.

Truthfully, I have been exasperated. I dread nighttime as the level of unpredictability overwhelms me. But one of those nights this week turned out to be an encouraging and special one between God and I.

I am sure other Christians can relate, but there are times that I just don’t feel connected to God.  I am praying, reading my Bible, and the desire is there but I just don’t “encounter” Him. And when that happens I find that I truly miss our relationship!

I have been going through one of those times lately, and I have been asking God to reveal Himself to me. He has been speaking through me but not necessarily to me.

One of the more difficult parts about nighttime is that I can’t relax. I have to stay on my game and be ready to spring into action- whether that be racing across the house to get to Malachi as he has a large seizure, or racing to pick up Levi before he vomits and possibly aspirates it taking it into his lungs. There is no time for that groggy early morning reaction time.

It was 2:50am on Saturday morning and Levi woke up gagging…again. I knew a reflux vomit was coming and I reached for the blankets I keep stacked at the foot of the bed for this very purpose. Could I catch it in time to not have to turn on the lights for clean up? I paused his feeding pump and grabbed a syringe to vent his belly from any gas pains that might be causing his gags.

I jumped up from a dead sleep and squatted down to the ground for what felt like the hundredth time that day, my back clearly protesting. And it was in that moment that God chose to speak to me.

The words were very simple and concise. He said: “Just wash their feet.”

I don’t know if you have ever experienced God speaking to you, but it is such a special thing. As He spoke those words I processed them in my head and said the phrase over and over again as I finished cleaning Levi up and crawled back into bed a few minutes later. I knew that He was referencing the New Testament scripture about Jesus washing the disciples feet but was having a hard time connecting the dots in relation to my boys. I knew it wasn’t meant to be taken literally, but was a metaphor of sorts.

I knew that in the morning I would doubt that I had heard these words, so I opened up the notepad on my iphone to jot them down so I could study the story later. And as God frequently chooses to do, He intercepted my fingers on the keyboard and continued to speak very clearly to me.

Just continue to wash their feet. Just continue to put their needs above your own, because that is denying yourself. That is joining me and taking up MY cross. That is loving the way that I loved. That is serving the way that I served. I have not called you to a life of comfort. Just continue to wash their feet through the sleepless nights, hospital stays, countless surgeries. Just simply continue to wash their feet.

This is the task you have been given by me. Am I not going to continue to give you the strength to continue in this life of service I have called you to?

Just continue to wash their feet. Because that honors your heavenly Father.

I am ‘the God who sees’ and my daughter, you are seen.”

 

I still get chills reading this. As I read the words He had spoken I was completely overcome with emotion and just laid in bed sobbing. I was reminded that this life I live is no accident. This was ordained by God and I was chosen for this.

John 13 tells the story about Jesus washing the disciples feet. And as I read the account, I was drawn to the last section:

12 When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. 13 “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. 14 Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. 15 I have set you an example that you should do as I have done for you. 16 Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. 17 Now that you know these things, you will be blessed if you do them.

It is so easy for us to fall into a trap of thinking we deserve things. We deserve to be recognized, we deserve to be catered to, or we deserve a break from the tough stuff of life. But what a revolutionary mindset Christ has presented to us through this story. Regardless of status, we are to serve. We are to deny ourselves and act out our love for one another by putting their needs above our own.

Jesus taught the disciples that day to go against their prideful nature and serve in love.

That moment with God refreshed me beyond what words can describe. And what blows me away is knowing that God is THAT accessible to me. My faith is mediocre. I am not an “exceptional Christian”. I am just like any of you, striving to live out a life of faith like we are called to do.

But I asked God to speak to me, and not only did He listen but He reached out to me with such clarity. He loves me THAT much…to remind me that He sees me and to encourage me to press on in this challenging life.

Have you had a God encounter? ASK FOR ONE! And then watch and wait because God has beautifully creative ways of speaking to us.

And as you can guess, those words have been playing in my head as a motto of sorts as I go throughout my days and nights. Just continue to wash their feet and serve and love them like Jesus would.

And that simple reminder has allowed me to wake up- yes, even 15 times a night- with a smile on my face, excited that I have the opportunity to show my sons what the love of God looks like.

My challenge to you all- whose feet is God calling you to wash? Who in your circles is undeserving, but needs to experience God’s love? Are you willing to serve like Christ and put your pride and status aside? Are you willing to metaphorically squat down and humble yourself to show God’s love to someone undeserving?

And may God encounter you this week!

Much love,

Leah

Reunions

Before I start rambling, let’s just talk about how much Jake and I have laughed at the chaos over the last 24 hours. Between all of us we have gone through 14 outfits today- and no- no one is sick…just a typical day in Carroll land. Jake has earned a badge of honor for changing his first blowout diaper for Levi, which Malachi (and mommy) thought was pretty funny.

We feel like we might possibly be losing our minds, a theory that was verified 30 minutes ago when Jake was putting Malachi’s pajamas on and instinctively tried to put Malachi’s shirt over his own head. I laughed so hard I had tears rolling down my face. The mental image of Jake having a tiny toddler shirt wedged over his face as he mumbled “What am I doing?” will forever bring me joy.

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The fact that we manage to accomplish anything in a single day is completely mesmerizing. Let alone get everyone dressed and to church (almost) on time!

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This week we tackled some pretty big appointments, so let me start off with some medical updates!

I took both boys to see the gastroenterologist (GI) doctor on Wednesday. I asked him which kid he wanted to talk about first and he said: “Let’s talk about the less complicated one” and pointed to Malachi. That made me laugh to myself as I would have never imagined that Malachi would ever be labeled as my “less complicated” child.

Malachi has obviously lost a lot of weight over the last 6 months as our time has been split between both boys needs. While the doctor is concerned, he also understands the reasons why and trusts that we will be able to pack the pounds back on now that we are home. He weighed in at 26 pounds, and his last weigh in 6 months ago he was 40 pounds. Yikes!

Then we got to Levi. Each time we see a new specialist I start over with my summary of our journey so far, and each new doctor is absolutely fascinated by the different things we have done to keep him trach free. Unlike brother Malachi, Levi has packed on some weight since we have been home and gained over 2 pounds in one month (He is just shy of 12 pounds)! The doctor and I agreed that we may be too aggressive with catching him up physically to his peers so we adjusted the rate that his feeds go in at. Now he is being fed 18 hours throughout the day instead of 20. We get to choose which 6 hours we take him off, so I usually reserve those for quick trips to drop Malachi off at school as it is one less piece of equipment to pack and prep.

At the end of the appointment the GI doc said “I have to be honest with you. I was expecting a different kid after reading through his medical history.” This comment caught me off guard and I pressed him as to what he was expecting. He replied “A kid like Malachi.”

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It seems that his medical records focus pretty intensely on his areas of brain damage. I am not quite sure how to feel about that. Doctors in Cincinnati told me that there is about a 10% chance of some minor disabilities caused by the brain damage and Chattanooga neurologists say about a 25% chance of cerebral palsy. Either way, Jake and I choose to believe he will not be affected at all and treat it as a secondary diagnosis that isn’t even worth mentioning to many of these specialists as it does not affect their treatment routes.

The following day was a big one as we headed back to Chattanooga to tackle a few more appointments between the boys.

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We started out at the pulmonologist for Levi. This is the doctor that will be in charge of making decisions about his oxygen support needs. We had spoken with this doctor extensively prior to being transferred to Cincinnati and I was looking forward to showing him the new and improved Levi haha.

He came into the room with a smile on his face, telling me how much he had been looking forward to this appointment. He said he was looking over his patient list for the day as he drank his coffee and when he saw Levi’s name he was ecstatic. He had a notepad with him and wrote down as many details as he could as I told him each step of Levi’s care in Cincinnati. After 45 minutes we still had not made a dent in anything other than a medical summary and he had to go do a procedure so he asked to meet again on one of his days off. I explained to him that if there was anything at all we could do to create another option for children in the future with bilateral vocal cord paralysis we would be very interested in helping.

I had brought pictures from every throat scope Levi had as well as a full article about the procedures we had tried. He asked to scan them all in so he could review them before we met again and couldn’t wait to see the difference that each procedure made. Overall it was a great appointment!

We agreed to leave Levi on oxygen for a bit longer, and down the road we will discuss weaning his oxygen requirements during the day time. As I told him, he truthfully doesn’t require it during the day. But there is no reason to mess with weaning it right now as everyone is still in a “watch and wait” mentality.

Our best takeaway from the appointment is that he is going to create a complex care plan for Levi that we will keep with us wherever we go. If for some reason we end up in an emergency room or hospital that is not familiar with Levi, it will give them a step by step plan on how to treat him from an oxygen/airway standpoint. One of my biggest fears is entering a medical environment that doesn’t know Levi and overreacts, putting him back on a ventilator when he doesn’t really need it.

After that appointment we raced down the hall to Malachi’s neurology appointment. Not a lot of updates from that, but they did decide to check his medication levels and do a blood workup to make sure they aren’t impacting other areas of his body. In the past some of the medications he was on were messing with his kidney function, so it is good to check those periodically. The GI doctor had also written an order to check his Vitamin D levels since he has lost so much weight, so off to the blood lab we went.

We protect Malachi pretty well from experiencing pain, so when it does happen it is a foreign concept to him. He has horrible veins from being born so premature and requiring them to be used so often for medications through IVs. This time around was no different and it took three sticks to get what they needed. Each time they stuck him he would wince with  pain for just a second and then look at the nurse inflicting the pain and smile. Little goober haha. I just love his precious, forgiving heart.

Finally, we stopped by the NICU for a visit with our friends! Luckily one of Levi’s primary nurses was working and it was nice to reconnect. We will forever adore the staff at the TC Thompson NICU. They have played such a big role in both of my children’s lives.

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After our long morning at the hospital we went to meet up with our Chick-Fil-A friends! Yes, I know…very ambitious of me…but I needed something non-medical to look forward to.

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If you are new to the blog, almost exactly one year ago I was pregnant with Levi and absolutely sick but starving. Malachi and I had been at the hospital all morning for appointments and were racing across town to another appointment that we were severely late for. All I knew is my body (aka a growing Levi) needed some protein! We whipped into the parking lot of the Chick-Fil-A in Chattanooga and found the drive thru line wrapped around the building. I was so exasperated and started to leave, but decided that by golly we were going to get some chicken. Malachi needed to eat too which is a long process so we parked and headed inside.

While we were there we had a very special encounter with a mom and her three children. I later posted about it on my Facebook “To the mom of three…” to encourage others with young children to teach them that differences are not something to fear, just as this mother had. The post went viral, much to our surprise. It was shared by thousands of people and the mom we met that day happened to see it and messaged me. The rest is history…Chick-Fil-A filmed a reunion with the mom and her kids and we have developed a pretty special friendship.

Here is a link to the story and a video of our reunion last summer:

https://thechickenwire.chick-fil-a.com/Lifestyle/Two-Moms-Reunite-After-Their-Story-Inspires-Thousands

 

It is absolutely amazing how God aligns our lives with others. And Malachi was absolutely giddy to see his friends again.

 

Levi has decided that the oxygen life is just not for him. He has managed to pull his nasal canula off more times than I can count, regardless of the type of tape I use. Each time he yanks it off he cries out in pain, not piecing together that he is the one inflicting it on himself. Then he smiles sheepishly at his accomplishment.

 

This morning at church we did something called cardboard testimonies. While a song plays a line of people one by one stand up on stage and hold up a piece of cardboard (front and back) with a few words testimony on it. Malachi and I participated and I thought I would share his with you.

 

 

I know I say it a lot, but he is just the most precious little soul. He loves church more than anyone I know. He loves every single piece about it…the people, the prayers, the music, even the preaching. Oh boy does he love when they talk about God.

This morning they sang “God’s Not Dead” and I watched him process the new-to-him song. He was clinging to every word and out of the blue he let out a ROAR. I was confused a bit until I realized that one of the repetitive lines in the song says “He’s roaring like a lion”. Malachi is so much smarter than we even know!

I got this picture from his teacher at school this week! He was able to go for a shortened day Monday due to therapy and all day Tuesday and Friday.

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And little Levi and mom got to spend some special one on one time, working hard on sitting up.

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I have been focused on some pretty heavy thoughts this week, brought about by unlikely things.

Just last week I was sharing with you about how wonderful it was to be back home and able to witness nature, and particularly the birds. I have been watching this past month as a mother bird has skillfully crafted a beautiful nest on the top of one of the columns on our front porch. Throughout the day I pass momma bird as I go in and out of the house, each time trying to be as quiet and predictable as possible so she wouldn’t be interrupted in her duties as a momma.

I know this sounds silly, but I have formed a bond with this little momma bird. I connected with her as she toiled day after day to prepare a world for her babies.

On Friday I went to take a bag of trash outside and glanced up to make sure I wasn’t going to interrupt momma bird. She was not on the nest so I headed toward the trash bins. My heart sank when I looked down and saw a newborn baby bird laying on the concrete, clearly no longer living. I went to take another step and noticed another newborn bird was also on the concrete, but this one was still breathing.

As I watched that translucent little body struggle to breathe I flashed back to watching my sweet little Malachi and grew nauseous. As my mind watched its little body move up and down with each hard breath it transitioned to memories of watching Levi as his body worked so hard to breathe.

I actually thought I was going to throw up as I processed what to do. I stood up to go get some gloves and found yet another newborn bird in the driveway, this one too was in worse shape than the other but still alive.

I put on gloves and put the living ones back into the nest, hoping that they could be saved. I anxiously waited to see if momma bird would return and sure enough she came back to fulfill her duties and keep those babies warm. Unfortunately after not seeing momma bird today I had Jake check the nest and none of the babies had survived.

And all day I have been mourning those stinking baby birds. Ugh I hate cliches, but it brought to mind Matthew 10:

29 What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without your Father knowing it.30 And the very hairs on your head are all numbered. 31 So don’t be afraid; you are more valuable to God than a whole flock of sparrows.

Tonight as I sat and thought about their little bodies once again, I tried to pinpoint why I was so affected by them, aside from the fact that they were vivid reminders of my boy’s early days. And my heart continued to break for that mother bird.

But I was also reminded that God was aware of those baby birds and their struggle. And as the Bible reminds us, we are so much more valuable to God than those birds. I know He is watching my boys and has their lives planned out from conception to their final breath, and I have to find comfort in knowing that they will remain on this earth until God decides to call them home.

I have been worrying about death a lot lately. Which can be dangerous when you have a medically fragile child. Too many what ifs.

My heart has been raw this month as I have watched two little boys in my support groups, very similar to Malachi in age and diagnoses, pass away. I can’t help but put myself in the shoes of their mothers as they deal with such a huge heartbreaking loss.

Suffering is so incredibly hard to process as a Christian. We live in such a broken world. But as a Christian I also have incredible things to focus my eyes on…

Revelation 21:1-4

“Then I saw a new heaven and a new earth, for the old heaven and the old earth had disappeared. And the sea was also gone. And I saw the holy city, the new Jerusalem, coming down from God out of heaven like a bride beautifully dressed for her husband. I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

I feel like I haven’t been a good steward of the blog this week and communicated something more relatable for you all. I will be praying that God lays something HUGE on my heart to share with you next week.

Keep me in your prayers as I process a lot of emotions these days.

This morning I had to take Levi out of the church service as his breathing seemed a little too distracting. Two other moms had also stepped out with their babies and we all sat in the lobby area with our little ones. I watched as they each breastfed their children- mothering them the way God intended, and caught myself looking down in shame at the tubes that fed my child. I suddenly felt so out of place. And different. Unworthy of the title.

It is in those moments that I see the devil hard at work, creating insecurities in me and exploiting my weaknesses. What a crafty serpent he can be. In the end, being a mother is so much more than how you feed your child.

Pray that God increases my awareness and that I am able to see and deal with these attacks before they strike.

And continue to pray for my sweet boys. Pray that Levi’s vocal cords suddenly wake up and he is able to function 100% normally. Pray that Malachi’s brain is restored and made whole and all seizures stop immediately. And continue to pray for wisdom for Jake and I as we care for such special children of God.

Much love,

Leah

 

 

 

Disfigured Yet Hopeful

This was a week of many firsts.

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Monday I tackled my first solo day of appointments with the boys. We had a 9:20 and an 11:20 for Levi an hour away in Chattanooga and a 2:30 for Malachi about 45 minutes away.

It took me about an hour and a half the night before to pack our bags, which truthfully could have lasted us for 4 days in the wilderness haha. But I wanted to make sure I thought of every potential situation we would encounter. When we arrived at the hospital I strapped each of them (and Grover of course) into the massive stroller we adapted for the boys and we were on our way!

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Appointment one was for Levi’s g-tube. We met with a surgeon who showed me how to change it out and replace it if it ever came out. The stomach heals impressively fast when the tube comes out- you have to get it back in within four hours or the hole closes up and requires another surgery to get the tube back in. He said that his g-tube site looks amazing and for every 100 he puts in, he is lucky if 10 of them look as good as Levi’s. I sheepishly smiled like it was something I had done, but the reality is that we are just blessed! Oh the things special needs moms take pride in…

This surgeon is the same one who has done nearly half of Malachi’s surgeries, including one life saving one when he was two weeks old. It was like an odd little reunion but for a different kid. While we love the man, I was very excited to hear that unless there is an emergency there is really no reason for us to keep seeing him on a regular basis. Specialist #1 checked off the list.

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Next we headed across the hospital to meet with Levi’s hematologist. Background info: shortly after Levi was born he had an MRI done on his brain to check for a malformation that would cause his vocal cords to be paralyzed. While we didn’t find the malformation we did discover two small areas of brain damage caused by a hypoxic ischemic event. That means either he went without oxygen for a period of time (highly unlikely as he was in the NICU and on oxygen support the whole time) or he had a blood clot that traveled to his brain.

Before we left for Cincinnati we had the hematologist check my blood to test for any clotting disorders. Levi is still too small to test so we thought we would rule out any issues on my end. I had been tested for these issues prior to pregnancy and everything came back clear, but the doctor wanted to spin them again to see if there was something they had missed.

At our appointment on Monday the doctor told me that everything came back clear again. Part of me is happy to have it verified that I do not have a clotting disorder (in spite of 3 blood clot issues), but the other part of me doesn’t like it that we don’t have a clear answer for Levi’s brain damage causes. But either way, unless another issue arises the hematologist decided that we do not need to be seen on a regular basis. Specialist #2 crossed off the list. BOOM!

We headed down to the cafeteria to get momma some much needed caffeine and to find a quiet place for me to feed Malachi. Once we were all recharged, we packed up the van and headed to Malachi’s therapy appointment across town. Malachi was a champ on his horse, in spite of not being 100% back to normal from his sickness last week.

Call me cocky but I was thrilled at how smooth our first big day went! We got allllll kinds of funny looks and barely fit into the elevator, but by golly we succeeded! I had one little old man literally circle the giant stroller multiple times as we waited for the elevator, fascinated by our set-up. He had a shocked look on his face and squatted down (yes, literally) to look under the stroller and said “Whew, I thought you had a third one under there too.” I didn’t quite know how to respond to that so I just smiled.

The rest of the week is a blur. Malachi went to school on Tuesday and Levi and I headed into town for our first big grocery trip- I hadn’t been to the grocery for 5 whole months and couldn’t wait to restock the fridge and actually cook. But shortly after we got there I got a call from the school that Malachi had already had a few big seizures that lasted longer than 2 minutes each. We quickly headed that way to pick him up.

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Malachi is feeling so much better but is having trouble with some lingering mucus. When you or I have mucus, we have the ability to cough it up and manage it well. Malachi doesn’t know how to do that so it sits in his throat and he panics. His brain tries hard to process what to do and when his body can’t do it the discomfort sets him into major seizures.

Wednesday his seizures were still going strong so I kept him home with me. Thursday he was ready to go but someone in his classroom went home with a tummy bug so he also missed Thursday and Friday in an effort to steer clear of those germs.

Malachi has really enjoyed the extra time home with Levi and wants to be close to him at all times. He has been trying so hard to get his hands on him this week and after 25 failed attempts to grab his hand, Malachi finally succeeded. I saw it coming and grabbed my phone to take a quick picture. This moment lasted about three seconds but to Malachi it was glorious.

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We have had some beautiful weather lately so we took the boys on their first walk this week. We went up the road to see the coon dog and Hank the pig.

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This seems over dramatic but I have been overwhelmed by the beauty we live in, and particularly fascinated by the birds. In Cincinnati I didn’t get a chance to see nature so being reunited with it here has been refreshing. We have been watching the sunset from the back porch this week and it has taken my breath away.

We have also been cashing in on some of our LaundryDoo loads! Thank you to everyone who donated a load to our family. I leave these bins on the front porch for pickup and they are washed, folded, and back on the porch within 24 hours. Best invention ever! And what a blessing.

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We have also been extremely blessed by our community in the form of food. We have had several families drop off meals throughout the week. Even today we came home from church to find a bag of hot home cooked food on the front porch waiting for us.

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Nighttime has been interesting. During the weekdays I take night duty for both boys so Jake can get some rest. We have Malachi on a video monitor so I can watch him for seizures- he usually has one within two minutes of waking up (around 3am) so we try to get in there pretty quickly. I also have Levi’s pulse oximeter on so I can watch his heart  rate and oxygen saturation. Add onto that his feeding pump that alarms often and the fact that Levi’s breathing alone is a huge distraction. It is not quality sleep for momma but it is better than nothing. I am living on prayers and caffeine.

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There are nights we are up and down several times an hour, and usually by morning I find myself smashed in the middle of two boys in our king sized bed…too afraid to sleep for fear Malachi will have a seizure and smother himself on a pillow and too afraid of rolling over onto Levi; co-sleeping freaks me out. This week I laughed to myself as I felt like the icing in the middle of an oreo. But as long as they are each getting the rest they need, I am choosing to be content.

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We were all able to attend church this week, and it was just what I needed after a week being cooped up at home! There is always an element of chaos with every thing that we do, but some outings are worth the crazy.

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Of course all of those late nights in the middle of the oreo cookie have led to some pretty in depth conversations with God about my boys.

I have been thinking a lot about Malachi’s journey. I remember bringing him home from the NICU, confident that everything the doctors told us about his brain was going to be wrong. God was going to heal my son. He was going to defy the odds, and we would give God all the glory. Miracles for Malachi, right?

My boy would walk. My boy would talk. My boy would be a typical child with no signs of his rough start.

I can’t tell you the specific day that I realized that God had different plans for Malachi. But I can tell you that I have struggled immensely with disappointment that God didn’t completely heal my son like I expected him to. We have watched Malachi’s body become more disfigured over the years, as his brain tells it to do things it isn’t meant to do. We have watched his little brain be overwhelmed with seizures. We have watched a lot of the the things those doctors predicted come true.

The disappointment is there.

But in addition to that disappointment there is a level of excitement, curiosity, and wonder as we watch and wait. There is a reason that Malachi was born this way, and there is a reason that his healing has not happened yet. And Jake and I continue to expect God to heal him.

Acts 3 tells a story about Peter and John walking up to the temple and finding a man who was “lame from birth”. This man looked at the ground, humbled by his condition, as he did each and every day, holding out his hands expectantly at the disciples as he asked them for money. The Bible paints such a clear picture of the scene.

“Peter looked straight at him, as did John. Then Peter said, “Look at us!” So the man gave them his attention, expecting to get something from them. Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.” Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”

From here, the Bible tells us that Peter was able to tell the crowd about Christ and His power.

“By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus’ name and the faith that comes through him that has completely healed him, as you can all see.”

As I reflected on this story, I saw it with fresh eyes as I stared at my own sweet son as he slept. I looked at his disfigured legs and wondered if the man from the Bible had the same disfigurements.

 

It would be physically impossible for Malachi to walk. Literally impossible. His ankles and feet turn out and up, we aren’t sure he has kneecaps, and both of his hips are entirely out of their sockets. Because he has never put weight on his legs, the bones at his hips never formed the grooves like they should. Every part of Malachi’s legs are marred beyond repair.

I can’t help but think that the man at the gate that day was the same way. His legs were atrophied from never being used. His ankles and muscles were weak and non existent. He was likely a mangled mess…just like my sweet boy.

But God chose to heal him that day. And I fully believe that God will heal Malachi too. One day Malachi will run. One day he will run so hard that his little cheeks turn red, and he will ask “Did you see how fast I was mom?”

And while each day that this doesn’t happen I experience a tinge of disappointment, there is also a level of excitement as I wait in anticipation for that moment to come.

Malachi’s “day at the gate” may not happen here on earth, but I have faith that it can. If God can heal this grown man in an instant, I am confident he can heal my 5 year old son. And I am confident that Malachi will be running laps on the streets of gold in heaven. His ankles will be straight, his knees will bend, and he will be walking and leaping and praising God.

As a Christian we are called to have faith. But it has to be a faith that stays strong, even through disappointment. Because of that faith, we are able to experience hope.

And it is that hope that keeps me smiling. Expecting, anticipating, and smiling. I can’t imagine going through our lives without the hope that Christ gives us. It brings me a peace that I cannot explain.

Tonight I am thanking God for fearfully and wonderfully making Malachi, as it says in Palm 139.

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

One more side note- I took the youth group to the movies tonight to watch “I Can Only Imagine” and it is an excellent movie! It has great lessons on forgiveness, even when it is difficult and how God can change a dark person into a completely new being. It captivated 22 teenagers this evening, so I think it is safe to say it was a hit for their age group too. If you are looking for something to do this week you should check it out.

Pray for our family this week as we raise the bar to 3 appointment days! This could get interesting!

Have a blessed week!

Leah

 

 

 

 

 

 

I’ve Been Thinking

Let’s start with the worst news- the Carroll family is sick. Ughhhh. But let’s brag on God for a bit because the only one who has avoided this nasty cold is Levi. There is literally no way that God isn’t involved in that. Seriously. Malachi spreads germs like a maniac…just this morning while we were sleeping nose to nose (the only way he will rest when he is sick…yep…it is disgusting) he coughed so hard his mucus nailed me in the eyelid. He has impressive trajectory for germ flinging. And sorry for that visual.

Even through the sickness Malachi is being his silly sweet self, laughing over the tiny things in life like chicken:

Here is a sweet little video clip of the boys playing together a.k.a. unknowingly sharing germs before mommy realized Malachi was sick.

We have been changing shirts between holding kids several times each day, using hand sanitizer, and trying to tolerate masks. All the while being pretty down for the count ourselves. I have been bathing the boys as much as possible since neither can really wash their hands at this point.

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But let’s back up to the middle of the week when Levi and I made the journey to Cincinnati for his throat scope. He very generously gave me a whole 3.5 hours of sleep the night before we left. I prayed most of the drive there, asking God to give me energy and He absolutely did. Levi slept most of the drive there and when he was awake played contentedly in his seat. We made it there in about 6 hours and checked in right on time.

I bought some new sock puppets for Levi’s feet and he is so entertained by them. I thought you might like to see a video of him playing with his new friends:

The drive itself set me on edge the closer we got to Cincinnati. I tried to eat something on the road but was so nauseous from the thought that I was taking my son somewhere where I knew they would inflict pain on him. I tried to reassure myself that it was for his own good, but my mind kept saying “but is it necessary?”

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Returning to Cincinnati after being inpatient for so long was a very different experience. In some ways it was much easier and in others in proved to be a challenge emotionally. When he was in the NICU these procedures were done quickly and he was taken back to his room to recover. This time around we waited in a tiny pre-op room for a few hours before he went back and then I met up with him in recovery.

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There were a few barriers for me this go around that I didn’t anticipate. I saw a few faces that I have unconsciously paired with bad things. Like times he was intubated and I didn’t believe he needed to be. I would pass these faces and so much bitterness would well up inside of me and I wanted to tell them to not go near my son. One of the other unexpected hard parts for me was pushing his empty stroller into the OR waiting area. Yikes.

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The surgeons came into the pre-op room before taking him back and Levi was having a meltdown. During these episodes he sounds terrible with his breathing so I was a little curious how they would feel. They looked at his retractions and work of breathing and said “He sounds bad but looks so much better breathing than before the last surgery!”

The procedure went well and they didn’t have to do any dilations. His airway has maintained its openness which was great to hear. They think that his epiglottis might be growing back up again- if you remembered we trimmed that down a few surgeries back- and we might need to trim again next scope. But overall a great report and we don’t have to go back for 6 weeks!

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We made it up to our room on the complex airway floor by dinnertime and Levi was not a happy boy most of the evening. I was still running on my 3.5 hours of sleep and hadn’t been able to eat anything all day; my strength was fading as I rocked him for hours and hours. I pleaded with God for a night of rest for him and I and by 11pm he was sound asleep. We managed to piece together a 7 hour night which is more sleep than I have gotten in weeks!

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The drive back took about 8 hours due to some accidents along the way, but Levi again did wonderfully. When I stopped for gas I noticed something…let’s see if you can spot the issue.

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Little stinker. I don’t know how long he stayed like that, but his oxygen saturation was at 100 the whole time.

I tried to keep my mind active for the 14 hours in the car and did a whole lot of thinking. A whole lot!

Before I dig into the deep stuff I do want to share a praise with you. One of the things we have been concerned about is Levi’s voice. The more we widened the vocal cords the less likely it is that he will speak. But this week he has been trying to vocalize and we are thrilled. Here is a video clip:

Okay back to my train of thought. As we expected, the comments have been rolling in from well meaning people…

“I don’t know how you do it!”

“You have so much patience!” (side note- I absolutely do not. If walls could talk they would have some stories to say about my lack of patience and my potty mouth during those times. This is something I have to pray for DAILY.)

“You have your hands full!”

As I drove I thought a lot about our current situation. And as I processed these comments I realized that at some point, maybe even from the beginning, people looking in started to see our life as a disaster. Those poor Carrolls.

And as I processed that I had this strong desire to change the way that people look at our family. Instead of pity and sadness, my desire is that people look at our family and see the hand of God. And they see how many ways we have been blessed!

One of our family catchphrases is: Uniquely Blessed.

What the world looks in and sees as broken and not ideal, we choose to see as a unique blessing.

We feel so extremely blessed that both of our children were born in a country that could give them lifesaving care. And even an age when those measures were attempted. If either boy was born even 50 years ago there is a very high chance that Malachi, Levi, and myself would not have lived.

We feel so blessed that God has given us the opportunity to be His hands and feet to both boys as we meet their daily needs. We are given the unique chance to practice loving others more than ourselves and allowing their needs to supersede our own.

We feel so blessed to be living a life that REQUIRES us to daily rely on God. I have to daily ask Him for wisdom, strength, and patience to get through each and every day. Sometimes that happens in a quiet, prayerful tone but more often than not it comes as a loud and exasperated scream in moments when I need it most. My prayer time before children used to be so generic, and now I am able to make firm requests of God and watch Him provide those needs.

I saw this funny little picture this week and have laughed and laughed at its accuracy for my family:

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We feel so blessed that God has equipped us to be parents to such special children. God didn’t give us children we were prepared for, but He has given us the tools we have needed to raise and care for them.

What exactly is the definition of a blessing? Any guesses?

It is actually defined as “God’s favor and protection”. Is the Carroll family “blessed” according to this definition? UNDENIABLY SO!

The Hebrew word used in the Bible for blessing is “esher” which translates to “happiness”. Process that for a minute. Is the Carroll family “blessed” according to this definition? ABSOLUTELY!

While it is so easy to look in on our lives and focus on the negative, Jake and I desire for you to peer in and spot all of the ways we are uniquely blessed.

God has shown us His favor. God has shown us His protection. And oh my, are we saturated in happiness.

There is a verse that played in my head over and over while I drove. I have said it to myself hundreds of times this week as I cling to its words.

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I can’t seem to get my mind off of the first line.

No disaster can overtake you

As I said this line over and over this week I felt the presence of God, as though He was speaking this directly to me. I have had so many Holy Spirit moments this week where I feel the presence of God so incredibly strong. It has brought me to tears.

“Leah, no disaster will overtake you. I have ordered my angels to guard you wherever you and your sweet boys go. You have no reason to fear. Walk with confidence in me.”

God doesn’t promise us a disaster free life. We have been ransacked with disasters. But like He says, not one of those can overtake us.

2 Corinthians 4 says this:

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 

WOW. The Carroll family has been pressed on every side, perplexed, persecuted, struck down. Life has been disastrous.

BUT GOD.

Through all of our disaster, God has rescued us from getting crushed, kept us from despair, not abandoned us, and kept us from being destroyed. My God has done that for me.

I can’t think of anything more encouraging and beautiful than knowing He loves me that much. And while the disasters come, and boy do they find their way to our family, I find comfort in knowing that no disaster will overtake us.

Oh goodness I have so many other things just bursting inside of me to tell you but I will save them for another day. I pray that this week you will be able to look at your disasters and be able to see the destruction, but also see those blessings, knowing that God protected you.

And I pray that you are able to find all the ways in your life that you are uniquely blessed.

Much love,

Leah