Tomorrow (Monday) is g-tube surgery day for our sweet Malachi. And I am just so sick to my stomach over it for several reasons:

1. Malachi is SO much more cognitively aware than he has ever been. In fact, his last surgery was in 2016 so he likely doesn’t remember the routine of things. I have been trying to explain to him about having to be carried away from momma by the nurses and how when he wakes up he is going to be sad and cry really hard. I told him his tummy will hurt for a little bit but will start to feel better after a few days. And momma will be there to play music and snuggle him when he wakes up. I have explained how we will have to stay a few nights in the hospital and won’t be able to leave the room and go on adventures. I am trying to prepare him as best as I can but this is going to be very hard for him this time around on a cognitive level.
2. This will be my first night away from Levi, with the exception of the two nights after he was born and taken to a different hospital. I have full confidence in Jake but just love that little boy so much.
3. I am struggling with some major PTSD right now. This is surgery #34 for this momma, and I have been alone for nearly 18 of those. Tomorrow I will be flying solo as it really isn’t in Levi’s best interest to bring him to a hospital unnecessarily where he can contract something new. I can definitely handle things alone, but surgery days are emotionally hard. (Don’t read that as a plea for company…I am confident I can’t handle company during these waiting times. I have tried before and it somehow makes things worse.)

I have probably hugged Malachi 100 times in the last 24 hours. I love that boy so much. Every ounce of me wishes I could take this pain from him.

The g-tube part doesn’t phase us as Levi already has one. We know how they work and what they look like so they don’t intimidate us, but we still wish he didn’t have to have one.

While this surgery isn’t “medically necessary” right now we know that it needs to happen to help him recover from his hip and foot surgery next month. We always knew the time would come for the tube to go in but wanted to prolong it as long as possible. I would say 5 years is a pretty great accomplishment…go Malachi!

Both boys are doing wonderful with feeding therapy and today Malachi knocked our socks off at lunch by eating several bites of my chicken casserole. He kept signing for more and enjoyed every bite without choking or gagging.

Let’s talk about this crazy week we just had…

As I told you last week, our soccer team had the unique and wonderful opportunity to play at the state tournament. Jake left with the girls on Tuesday and the boys and I followed on Wednesday, making it there just in time for warm ups. Some wonderful friends from church offered to drive over (2.5 hours) and sit with the boys on the sidelines for the duration of the game so I could enjoy being just “coach”. What a blessing that was for me.

After 78 minutes of a competitive match, our girl’s knocked in the ball (with just over a minute on the clock) winning the game! We were overwhelmed and speechless. The last time a team from our tiny little town went to state and won a match in ANY team sport was in 1983. We have 19 girl’s on our roster…every girl that tried out made the team as we don’t have a huge group to pull from. Most of the other schools represented in the state tournament were private schools or came from the suburbs of large cities (like Nashville and Chattanooga).

This photo speak volumes:

And here is a video of one of the two goals from that game if you are a soccer enthusiast. Both of our goals were headers, which is rare and fun:

 

The girls were scheduled to play the following day (Thursday) so we headed back to the hotel. The next morning Levi woke up screaming like a wild man and when he couldn’t be consoled we wondered if something was wrong. We put him in the stroller and went down to the lobby and he immediately stopped crying; we assumed waking up in a strange place may have frightened him. But as the afternoon went on his screaming would randomly continue and he would get so worked up he would vomit.

I was running on very minimal sleep and since we didn’t have an oxygen concentrator I was limited to moving within 5 feet of the big tank in the room. Not an ideal situation for soothing him. When it came time to head to the game with the girls I made the very hard decision to take the boys back home instead.

I was so incredibly disappointed. I know it sounds silly, but I cried most of the way home over missing this game. We love those girls so much and I wanted to be there and experience this moment with them. Our team ended up finishing 3rd in the state!

We made it home late Thursday night and I raced the boys and the necessary gear in, watching intently for our bear friend to make sure he wasn’t sneaking back onto the porch. As soon as we got into the house Levi started laughing hysterically- he was so happy to be home. But he was up and down most of the night and started running a fever of 101.

The next day I decided to take Levi to the doctor. I battled this decision fiercely…I was pretty confident that he had an ear infection only, and exposing him AND Malachi (who was getting ready to have surgery) to a doctors office seemed like a bad idea. But I had no other options so to the doc we went. I called ahead and worked out the plan to wait in the car with the boys until the doctor was ready to see Levi. They were going to clean out a back room that hadn’t been used by any kids that day and put us in it, attempting to eliminate any unnecessary germs.

Great plan…until the receptionist that was going to call us left for the day and didn’t pass the message along. I have a knack for being pesky and didn’t want to annoy them so I tried very patiently to wait. I have been trying to work lately on giving grace, as that is a struggle sometimes. Levi napped and Malachi and I sat in the front seat and played. Levi woke up and started screaming again so I decided to check in (it had been almost an hour). When I realized I had been forgotten I started to get very emotional…those floodgates are pretty weak these days and the lack of sleep didn’t help. They got us in immediately and the doctor verified that it was an ear infection. After starting on some antibiotics, Levi is now back to his happy and chipper self.

And just as predicted, he has learned how to rock the car seat so hard it gets stuck upside down (not completely, just propped with his feet dangling over his head).

Back to soccer…

Jake and I have been completely humbled that the girls have achieved such a big goal. At the beginning of the season we asked them what their vision was and they said they wanted to go to state. We told them we would do everything in our power to help prepare them and make that happen and they did it!

There were several moments during the game that I would look over to Jake and find that he had disappeared off to the side out of sight. He would be down on his knees with his hands raised in the air, clearly praying. I know Jake well enough to know that he wasn’t pleading to God for a victory, but later I asked him what that was all about. He explained that lately God has been telling him “Honor me in this moment”, and each time God speaks it, Jake immediately obeys.

You may not know this about Jake but he is incredibly competitive. God knows our hearts, and I think God speaking those words to Jake during game times is no accident. He wants Jake to remember that even in the little things, the everyday mundane, we are to honor Him. Or maybe those moments of Jake on his knees honoring God were for someone else there…a reporter standing off to the side, a player on the field, a mom on the sidelines. God’s ways are mysterious, but when He speaks we should always desire to obey, even when those moments could feel out of place and embarrassing.

I am thankful for Jake’s obedience. And I am thankful for his walk with the Lord. He offered an optional Bible study at the hotel for the girls and almost all of them came down for it. We always talk to each other about the special calling God has placed on our family. We may not be harvesters for the kingdom of God but we recognize the role God has called us to as seed planters.

A neat side story- the coach of the team we played on Wednesday left this message on last week’s blog:

Hi Jake and Leah. Congratulations on the win last night! Your PCHS girls played some inspired soccer and were fun to watch. Cool story: I coach the Grace Christian girls and yesterday afternoon as we were preparing for the game one of our moms sent a link to your blog to my wife. I was in the midst of my typical pre-game angst and asking God what he wanted me to share with the team as we prepared to play. She sent me the link with the caption “Some perspective…” I was so moved reading about your journey; I shared the blog with our girls as our pre-game devotional and talked about how there are no coincidences with God. We often have no idea what He’s doing and He connects us with people and stories for reasons only He knows. All that to say, although our girls are devastated by the result last night, you have some new prayer warriors praying for you and Jake and Malachi and Levi in Franklin, TN. As a team, we’ll continue to pray for you, your family and your work there in Polk County. And good luck to you and your girls today! Go ahead and win this thing!!

This kind note humbled us even more as we watched God do His thing! Last week after I typed the blog I turned to Jake and said “Well, that wasn’t a very good entry but I am just too exhausted to think.” But God. He can take what we see as broken and messy and turn it into a beautiful thing to someone else’s eyes. Like that coach said, we often have no idea what He is doing and there are no coincidences.

I have personally been having a rough few days. It may be pre-surgery nerves, it could be the continual sleep deprivation, it could be the devastation of not getting to stay for the final soccer game…there are several culprits, but regardless the feelings are there.

I have been focused on a verse this weekend from Romans 12 that says “Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer.” I keep reading it over and over, processing each command.

Honor one another above yourselves. This part has been challenging me and consuming my thoughts. It is similar to the golden rule, “Do unto others as you would have them do unto you”, but is an even greater challenge to honor them ABOVE yourself. Yikes! That is a tough thing to do.

In my crazy life this command towards my children is not a hard thing to follow, which I think most moms would agree is true for their children as well. I HAVE to put their needs above my own. They can’t do anything on their own so it falls to me to do. But what about my marriage with Jake? That takes some conscious effort to apply the command there.

I am going to tell you a story, but I don’t want this to be taken the wrong way. Jake and I are happily married and to give the illusion otherwise would be inaccurate. We praise God daily for the strong marriage He has formed between Jake and I; the statistics show that the divorce rate for special needs parents is 80%. We recognize we are an anomaly, and work hard to stay on the good side of that statistic.

That being said, here goes…

I was a frazzled, and as we say in the south, “hot mess” when Friday rolled around. I had driven over 300 miles alone with one epileptic special needs child and one screaming ear infection ridden baby. I was having to pull over at rest stops to make sure everyone was staying hydrated, medicated, and poopy free. I was running on 3 hours of sleep, spending 7 hours that night rocking each of my children in my arms. I missed at least two meals a day, some days not eating until 9pm.

Jake came home Friday afternoon and I was so thrilled to have reinforcements. He helped me get the kids ready for bed; Malachi has to be held upright as he falls asleep or he has major seizures, so Jake took on that role and when he was asleep carried him to bed. Levi was wide awake and has been staying up until around 1am. After Jake laid Malachi down he disappeared. I assumed he was reading his devotional or unpacking his suitcase but after several minutes of silence I went looking for him. He had gone to bed. And boy was I jealous. And then boy was I a little mad. And then boy was I furious. He had just spent 3 nights alone in a comfy and quiet hotel room, getting 10+ hours of uninterrupted sleep, and I was the one staying awake with the wild child.

As women often do, the more I processed the more frustrated I became. I secretly wanted to dump a pitcher of cold water on his sleeping face, but refrained. I started thinking, why is it that I put everyone else’s needs above mine but no one will do the same for me? Why am I not a priority to others? I thought about the verse “Honor one another above yourselves” and got mad at Jake for not doing that for me.

A few hours later I went to bed, still extremely bitter at Jake. I looked up that verse again to read it, but this time I kept reading…

“Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

Ahhhhh man. Conviction. Ugh. Surely if Jake had gone to bed like that he must have been exhausted too. And playing the “I’m more tired than you” game never ends well, often leaving both of us resenting one another.

Honoring others above ourselves is not meant to be an easy thing. It goes against every bit of our nature. But when we do obey that command it is not necessarily about serving these people, but rather it is about SERVING THE LORD through our love towards others. It isn’t about Jake, it isn’t about Malachi, and it isn’t about Levi. It is about honoring God by serving others and fulfilling their needs…it’s not about doing these things with an expectation for return on the investment. It is about doing it with the heart and the mind of Christ, with zero expectations in return.

When we honor others, we are honoring God. My heart needs to reflect that motive instead of my selfish ones. 

And maybe, just maybe, I need to be plotting less about the pitcher of cold water.

And before you start sending Jake hate mail, know that he did get up with Malachi later that night for his 4am wake up which allowed me to get a straight 7 hour stretch of sleep. Amazing sleep.

And then there is the beauty in the challenge of the final part of that verse : “Be joyful in hope, patient in affliction, faithful in prayer.” All three of these things are challenging on their own. Throw all three in the same sentence separated by commas and boom. But I am claiming these words over our family tomorrow and will be striving to obey each command.

I pray that I can be joyful in hope as I wait anxiously in the pre-op room tomorrow. Malachi is very in tune with my emotions and I want him to feel joy from me instead of nerves.

I pray that I can be patient in affliction. The waiting game while your child is in surgery is incredibly miserable. This particular surgeon has wonderful nurses who oblige my request for frequent updates during the surgery. Part of me is sad that I know these surgeons and their staff so well, but anyway… while he is back in the operating room I sit close to a phone and wait for it to ring which it does 5-6 times during the procedure. Those hours of waiting drain my emotions. In fact, when I finish this entry the next thing on my to do list is to chop all my fingernails off so I can’t pick at them tomorrow during this time.

Faithful in prayer. God did not give us a spirit of fear. So when I am overcome by that fear the best route to clear it is prayer. But sometimes the devil gives me amnesia and I forget that fact. I allow myself to get overwhelmed by that fear instead of releasing my worry to God. Tomorrow I will be trying to be extra vigilant on focusing on faith over fear.

Please join us in prayer that tomorrow stays complication free and Malachi is able to have this procedure done laparoscopically (vs open incision). And pray that God overwhelms me with his presence and takes away that isolation I have been feeling lately.

Sincerely,

Leah

 

 

 

Jake and I wear many hats. But we have orchestrated each one in such a way that we rarely have to wear them all at once. We compartmentalize each “role” we have and life just chugs along, us living day by day and doing our best to give 100% to each one.

For example, here was today’s crazy schedule:

Saturday night we went to bed around 12:30am

4:00a-6:00a Up with Malachi

7:00a-8:00a Up with Levi

8:30a-9:30a Made Jake get up with Malachi haha

10:00a-11:00a Went to Sunday School

11:00a-12:30p Taught Children’s Church

4:00p-5:30p Soccer Meeting

5:30p-6:00p Staff Meeting at church

6:00p-7:30p Took youth group to the pizza buffet

8:00p-9:30p Soccer parent meeting

10:00p-current       Blogging it up!

In addition to all of that was feeding children, changing diapers, bath time for the boys.

So the good news is that our soccer team has won their district, their region, and their sub-state game and they are now headed to Murfeesboro, TN (about 3 hours from us) to fight for the state championship. If you don’t know anything about soccer just know this is a HUGE deal for the girls and for Jake and I as their coaches! We are so proud that their hard work has paid off.

But with this honor comes a whole lot of hard work for our little family. All week long we have been scheduling referees, painting fields, meeting with coaches, hosting games, coordinating 19 players and their parents. This is all in addition to me working part time, tackling medical appointments, being youth minister and doing lesson plans for the children’s minister job. It has been a whirlwind of busyness for us!

As we head to the state tournament we add to the list: hotel, food, chaperones, transportation accommodations for 19 high school girls. Then the actual trip for me and the boys (Jake will already be there a day early with the team). But we never shy away from a challenge so Murfeesboro here we come!

Is all this busyness in life necessary? Absolutely not. But Jake and I firmly feel that we are called to make a difference in as many lives as we can while we are here on earth. We recognize that so many teens in our county don’t know Jesus, and if we can show them a little bit of Jesus as their coach, teacher, friend, mentor, youth pastor then it is worth all of the stressful days. We always want our lives to be about others rather than ourselves.

A week from tomorrow Malachi will have surgery to place his g-tube. We really need help with prayers over this surgery as it could be a smooth and easy one or it could be difficult. Our goal is to place it laparoscopically but with the amount of scar tissue in his belly we may have to do a large open incision to be able to place it. The plan now is for Jake to stay home with Levi, as we are very worried about exposing him to hospital germs and sickness. Malachi and I will have to stay at least one night, based on the type of incision we end up doing.

Levi’s eye appointment this week was canceled. The doctor we were scheduled to see went on maternity leave the day before so the appointment has been pushed off until November. I was trying really hard to keep our November relatively open since we have so many pre-op and post-op appointments for Malachi’s next surgery but unfortunately it is filling up fast. We need some major prayers that we all stay healthy enough to handle the chaos that is coming.

Both of the boys have been hilarious this week. Levi has started talking to Malachi, and hearing his little noises warms my heart. I tried to snag a video this week, but this was the best I could do:

He has been turning lots of heads with his rocking action. We are having to keep him strapped in as he has almost flipped the seat several times!

And Malachi still LOVES Levi so much. He has been filled with joy this week, more so than his normal. He really enjoys going to the soccer games with us and even cheers on the team. There is a girl on the team named Maggie and he shouted her name as clear as day TWICE. Here is a video of him laughing at Levi:

Malachi rode his horse like a champ this week, pretending to be a superhero the whole time. His whole face changes when he is pretending and he gets very serious while he puffs out his chest dramatically. He is a ham.

Levi will turn 1 in three weeks…that seems so unbelievable to me. But too many emotions, so I will save that for another post.

And just to keep us on our toes, another bear came for a visit this week! I heard him around 3:45am and peeked out the window to see the largest bear I have EVER seen right outside our window. He picked up our wheeled trash bin (with 3 full bags of trash) and carried it like it was nothing 50 yards away and into the woods. After I saw his size and the ease of which he carried the trash like a coke can, taking the shotgun out on the porch (firing it to scare him only- not hit him) seemed like a really bad idea. He came back about 45 minutes later to check out the rest of the porch then went on his way.

To be honest, I am struggling with a little bit of conviction this week. Watching all of these intense soccer games has brought out the competitive side in me and I have caught myself yelling pretty loudly at some of the games. Now granted, none of what I yell is necessarily mean or hurtful but I wonder what those moments of impulse say about me as a Christian. I always want to reflect God, and when I find myself getting mad about silly things that is definitely not an accurate reflection of Him.

We had a rainy day this week and anytime it rains my day gets more challenging. Nothing can be done quickly with the boys, and loading them in and out of the car alone can take about ten minutes, leaving me soaked to the bone.

We happened to have feeding therapy on this rainy day and by the time we made it in I was on the verge of tears, just overwhelmed and feeling defeated. It took me longer than normal to get the boys out of the car so we were a few minutes late- something I HATE. As I wheeled through the doors of the therapy office I started smiling, thinking to myself about what an insane life we have. It was one of those “laugh so you don’t cry” moments.

As I raced down the hall, leaving a trail of water from our rainy clothes a woman stepped out of her office and flagged me down. She said “I don’t know you, but I see you come in here each week with your hands so full. But you always have a smile on your face. It is so encouraging to me every time I see that.”

I don’t take compliments well and usually get awkward (even when the words truly touch me), and this time was no exception. As I verbally fumbled my words trying to think of a reply, the therapist walked up and said to this woman “It’s because she is a Jesus lover.” The woman smiled at this new piece of info and nodded like she knew it all along.

I keep thinking about that conversation. I keep thinking about the impact we are supposed to have on our world. I desperately want for God to be seen in me. I desperately want to be known as a Jesus lover, not by my words but by my actions. I want to be a lighthouse for His light.

My job as a daughter of Christ is to keep that light within me shining brightly. Trust me- it fades when you aren’t tending to that fire. And truthfully, I think that is part of the problem I have had this week with my sports enthusiasm. I haven’t been into the Word as much as I should be.

But thankfully each day has new mercies and I can change that routine starting now.

Please continue to pray for the Carroll family as we tackle this messy life day by day by day…

Love,

Leah

 

 

 

Y’all, we got a good picture! In the six minutes of peace before the headbutting incident from last week she was able to capture this beauty! Boom.

It was early in the morning one day this week when the question hit me…

“What kind of mom would I have been?”

I am constantly battling the temptation to think about what kind of child Malachi would have been had things gone differently. I continually catch myself dwelling on those thoughts.

But sometimes I mourn over the things I am missing as a mother. And as that question swirled around in my mind throughout the week it started to shape the lens I looked through in my daily tasks.

I walked through the store to find socks for Levi I caught myself reaching for the cute socks- only to redirect my hand towards the ones that I knew would help hold his pulse oximeter sensor on better when he sleeps. The boring socks. I would have been a mom that picked the fun and crazy socks. Sometimes I wish I could reach for the crazy socks.

I walked to find clothes for the boys and quickly bypassed the ones in Malachi’s size with a popped collar. Shirts like that can suffocate him if I am not watching him closely. And I sadly breezed on by the cute clothes for Levi knowing that they wouldn’t protect his g-tube site from his grabby hands and they would not accommodate his tubing without me hacking the outfit up with scissors.

I would have been the mom that was known for hugs and kindness- known for drying tears instead of creating them. Known for kissing boo-boos and not known for allowing surgeons to create those painful scars. I would have co-slept, not fearing that my 5 year old might accidentally smother himself in his pillow during a seizure. Or that my baby might roll enough that his oxygen tubing might wrap around his neck and suffocate.

I would have been the mom that bought bath toys, knowing that bath time could be fun! Never did I dream I would be wheeling one child into a shower and fighting his body’s instincts to try to get all of him clean. Or prepping the baby tub for the other child, spending 15 minutes preparing all the extensions, oxygen tubings, dressings, and tapes then wrestling him to keep his hands away from his now exposed tummy tube.  Buying the bath toys right now gives me something else to mourn over as they would sit on the shelf untouched.

I would have been a flexible mom that wasn’t stuck on routines. Instead these routines (med schedules, doctors visits, therapies, keep my children alive and improving. I have to walk the same routine path through my house with my 11 month old to keep his 50 feet of oxygen tubing from getting wrapped around furniture as we move from room to room. Even my steps have to be pre-determined and thought out.

I would have been a playground mom. A playgroup mom. Not a mom who sees germs everywhere she looks. Germs were never on my radar. They were simply germs…they made you stronger as they built your immune system.

I would have been a cookie baking, come lick the spoon kind of mom. Never did I imagine that my children wouldn’t be allowed to eat food by mouth safely.

Would I have been a mom who was anti-vaccination? I no longer feel I have the choice to be “that mom”. The decision to be all natural with my children has been taken from me as those medications and interventions that others avoid are the exact ones that keep my children alive. Seizure medications are non-negotiable. The one year we didn’t give Malachi the flu shot he almost died, ended up in the ICU for two weeks. I sincerely feel that vaccinating my children is helping keep them alive.

I would have been a mom that took “mom days”. I would have gone out with friends to get manicures and pedicures. Taken time for me. Instead I am the mom that is mortified by my fingernails as any rare time my hands are empty I am anxiously picking at them. I am ashamed by my anxiety but genuinely don’t know how to relax.

I would have been the mom planning family vacations, camping trips, ski trips, and getaways. I always wanted my children to have experiences over “stuff”. The challenge of finding handicap accessible places and experiences paired with the challenge of packing and transporting medical equipment squashes the dream for being that mom. Instead I find myself planning overnight hospital stays and road-tripping to different hospitals in different states for quality medical care.

There is SO MUCH beauty in my life. But there are also these moments of severe sadness.

As I processed that question this week I listened closely to the Holy Spirit, trying to decide if I was feeding a bitterness root and allowing it to grow. We are called to guard our heart and mind, and I wanted to be sure that I wasn’t opening that battlefield to another attack.

But as the days went by and the thoughts kept coming the conviction stayed away. I ALWAYS feel conviction over my thoughts about what Malachi “should” be like. But that feeling never came.

You see, God doesn’t have an expectation for us to be happy all of the time. He doesn’t expect us to never experience sadness or mourning. In fact, we are told that in this world we will have trouble. There is a time to weep and a time to laugh. A time to mourn and a time to dance. (Ecclesiastes 3:4)

But there is a thin line between controlling our thoughts and allowing our thoughts to control us. And change us. For now I am in a safe range with my mourning…because I continue to firmly believe that God can and will turn my mourning into dancing. I continue to trust, continue to hope, and continue to believe that God’s plan for my boys is more beautiful that the one I  pictured.

But some days are very hard for this weary momma.

Changing gears to happier things…look at this precious illustration made of our family! It made me tear up this week as it captured Malachi in such a special way. We found a woman on Facebook that makes them for just $20 (plus $5 for each kid) and figured it was worth a shot since photos don’t always capture the best sides of my children. If you are interested in her making one for your family you can email her at walker.courtneyp@gmail.com. They would make an awesome Christmas gift too!

Jake was on fall break this week and having the extra set of hands around has spoiled me! He stayed home with the boys while I went to work in the mornings, and we were able to fit in some fun in the afternoons. Here are some photos from our aquarium trip. The aquarium has extremely low light so Malachi can usually see the fish and the jellyfish pretty well; he always smiles so big when he catches a glimpse of their movement. He also LOVES touching the stingrays.

I took the boys to their GI doctor this week for a check up. Little Levi is getting chunky weighing in at nearly 19 pounds! Malachi is still hanging at the 25 pound mark and the doctor is hoping to put some more weight on him after his g-tube is placed.

Malachi also played in his final fall soccer game and even got a medal at his awards ceremony. He is incredibly proud of that medal and wanted to take it to church this morning for all of his friends to see. If you are in our circles and see him this week be sure to ask him about it.

After the game on Saturday they had a special surprise and brought in some superheros to meet the kids! Malachi was so excited that Batman came to visit!

I have been trying extra hard lately to narrate life to him. The harsh lights of the gym completely stunt the little vision he does have. This was his face when I told him that Batman came to visit him:

The boys tagged along to soccer games with the high school team, bowling and arcades with the youth group, and all kinds of other adventures. The soccer team that we coach just won the district championship so this week they will be battling for the regional championship title. The weather officially changed this week so I am hoping I can still make it out there to the games, but obviously the boys comfort and health trumps my coaching desires. We are so proud of our team though!

It really was a wonderful week for the four of us. This week we will be heading back to the eye doctor for Levi to discuss surgery.

We are inching closer and closer to surgery days so we need to continue to cover the boys in prayer! We need them to be completely strong and healthy heading into this next branch of our crazy life. Please join us in prayer over their bodies.

Faith over fear.

Love,

Leah

 

 

 

Another busy week in the Carroll house. Three high school soccer games, a youth group hike, Malachi’s soccer game, oxygen delivery, physical therapy, feeding therapy, and horse therapy. And my new office job has been going great!

Not a whole lot of Levi updates for this post. We are still patching in preparation for our eye appointment next week. And Levi is all about cups these days so we have been letting him play with a sippy cup at mealtimes. One day soon we will try adding something into the cup! Liquids are still an unknown for him so we have to make sure that he can protect his airway from thin liquids.

As you already know, Malachi is in a CDC (Comprehensive Developmental Classroom) setting at his school. During his IEP meeting a few weeks ago we decided to start working him into the “inclusion setting” for a little while each day. That means that he leaves the CDC with the nurse and goes into a typical kindergarten class for a bit.

This week was his first week with his new classmates and the regular teacher (who happens to be a friend of ours) asked me to come in and speak to the kids about Malachi’s differences. They were all so attentive as I explained that Malachi’s brain doesn’t talk to his legs and tell them to move. I purposefully didn’t spend a lot of time telling them about the things that Malachi CAN’T do but instead focused on the things he CAN do. I really want them to see his ability instead of his disability.

Malachi was so excited to talk to his classmates and readily showed them his communication signs when I asked him to. They had the chance to ask questions and none of them seemed to be nervous around him. He was thrilled to have the audience and loved hearing me talk about him. He is a compliment hog.

I am all about awareness when it comes to children with disabilities. It is so important that we, as Malachi’s parents, allow people to get to know him so that maybe it will impact the way they treat strangers like Malachi out in public.

Malachi has been so strong lately. He has been sitting up straight and tall with sudden bursts of strength and we always try to make a huge deal out of it to encourage him. I was able to catch his silliness on video for you:

Foolishly I keep continuing to believe that one day I will actually get a good family photo of all four of us. A friend of ours was doing short 20 minute photo sessions and I thought we would give it a try. She also has a daughter with special needs so I knew she would be up for the challenge. I meticulously planned it all out, ironing tiny baby clothes and even going as far as blow drying and hair spraying Malachi’s hair, much to his delight. Levi decided he didn’t want to nap that day and as we inched closer to the appointment time I had a suspicion this wouldn’t go well.

We got there a few minutes early and each tackled dressing a boy. It was important to me that Levi not have his oxygen on for the pictures so at the last second we peeled it off his face. About 6 minutes in we were seated on hay bales and Malachi realized he was awfully close to Levi….close enough to head butt him. He flung his little body at his brother and BOOM they hit heads. Levi started to cry, much to Malachi’s delight. I was able to calm Levi down slightly so back to the hay bales we went, but Malachi had figured out a way to make Levi cry and wanted to do it again. Little stinker.

The head butting attempts continued, Malachi determined to make Levi cry again. Oh, the brotherly love. Within a few more minutes exhausted Levi was hysterically crying causing me to run for the oxygen. At that point I was saturated in my own stress sweat, feeling anything but beautiful.

We haven’t gotten the pictures back yet but be assured there will be a few with Malachi’s mischievous smile. And a few with Levi’s tears. And probably a few with a tired eyed and stress sweating Leah.

I have such a hard time managing disappointment. All the preparation for that 20 minute photo shoot and it definitely didn’t go like I had hoped. I was genuinely mad and sad as we drove away. It was one of those moments where I caught myself saying “Why can’t I get decent family photos like everyone else? Why can’t we be normal?”

Since we had driven 30 minutes for the photos and were all dressed up we decided to go out to eat. What an adventure that proved to be! Malachi was still fueled by the fact that he made brother cry and with a sudden and random burst of strength, started throwing his crayons. Literally throwing them- he has never done that before. We were actually impressed more than angry. At the same time, Levi was on a rampage trying to grab my full cup and tearing the menu. I had my arm raised in mid air with a buttered piece of bread and Levi knocked that sucker right out of my hands and onto the floor.

Jake and I couldn’t help but laugh, as were the people around us watching our “quiet family dinner”. We finally waved the white flag and headed home for the night. As I walked out to the car I was still a little bitter about how things had played out when I noticed something squishy on the bottom of my boots. Yep- you guessed it- I had stepped on the buttered bread, squishing it disgustingly into the many crevices in my shoe tread. I threw up my hands and said “SERIOUSLY!” and looked for something to scrape that gooey goodness off with. Then my eye caught a random crayon stuck in the bottom of Malachi’s wheelchair from his throwing rampage.

I was able to use the crayon to scrape off the buttered bread. Makin’ lemonade out of lemons I guess haha.

These boys. They are WILD! I have been trying to teach them about being gentle with each other, as they both could use the lesson. Each day I have been putting them both on my lap so they can be within arms reach of one another. So far we have had some pretty epic fails. I took some photos and a video this week to share with you.

Here is the video:

I have had several people ask about our bear situation. I am pleased to update that while we have seen about a dozen bears on our road in the last few months, they are no longer hanging out on the front porch! And the route that they come and go in our backyard is overgrown which is a good sign the path hasn’t been used lately. They have been spending some time at the neighbors house so we are still very cautious when we come and go after dark.

I had the privilege of speaking in a women’s Bible study this week. God had placed scripture on my heart to talk about but I ended up not even talking about the part that I really wanted to focus on. So I guess I will share that with you all.

The prophet Elijah is on the run from the queen who is out to kill him. After the angel incident I shared with you last week, he finds a cave to hide in and starts lamenting to God about how he wished he would just die. That’s where I will start:

1 Kings 19:11-13

¹¹ So He (God) said, “Go forth and stand on the mountain before the Lord.” And behold, the Lord was passing by! And a great and strong wind was rending the mountains and breaking in pieces the rocks before the Lord; but the Lord was not in the wind. And after the wind an earthquake, but the Lord was not in the earthquake. ¹² After the earthquake a fire, but the Lord was not in the fire; and after the fire a sound of a gentle blowing. ¹³ When Elijah heard it, he wrapped his face in his mantle and went out and stood in the entrance of the cave. And behold, a voice came to him and said, “What are you doing here, Elijah?”

I have been thinking about these verses for several weeks now, trying to relate them to life. While I have yet to officially grasp what God wants me to take from this, I have come up with a few conclusions…

God speaks in whispers. So many times we want to confidently hear from the Lord. But we don’t take time to listen for the whispers. In fact, anytime I have truly heard from God it has been in moments of silence. The night Malachi was born I was laying on my bed in pain and I heard “Get up and go” as my feet hit the floor. I knew that moment was God.

Time and time again I have heard from God in moments of quiet.

Do I seek Him enough in my quiet moments? I find myself “praying without ceasing” throughout my day as I speak my thoughts, frustrations, worries to God. But how often to I stop and listen for God to speak back?

Another thing that keeps striking me about this particular scripture is our habit to look for God when things are chaotic…to look for Him in the earthquakes, the fires, the mountain breaking wind. But we often forget to look for Him in the gentle wind moments of our lives. We forget about how constant God is, and how He tells us He will never leave us or forsake us.

We mistakenly see Him as a presence that comes and goes based on how our lives are going. We forget that God lives within us and is present in all circumstances.

This week I will be focusing on finding God in the quietness. I will take those rare moments of gentle breezes in my day to acknowledege Him. And listen to what He has to say.

I realize that some of you may have never had that type of encounter with God so I feel led to explain what I mean when I say “listen to God.” Hearing the actual voice of God is not what I hear…but God places words, commands, and promptings on my heart and mind. And when I hear them I KNOW without a shadow of a doubt that those thoughts are not my own.

My prayer this week is that you encounter God.

Please pray for our family as we are coming up on some pretty intense days. Malachi’s first surgery (g-tube) is on October 29th and his hip/feet surgery is on November 20th. We will find out more about Levi’s eye surgery when we see the doctor next week. Pray for guidance and wisdom for Jake and I as we make big decisions on behalf of our boys. And pray that we can all remain healthy through this winter season. Jake, Malachi, and I all got our flu shots this week and we need to pray a hedge of protection specifically over Levi.

God bless,

Leah

 

Let’s hear it for a tear free week! I think last week depleted the tear reserve.

There is something very special going on with Malachi’s little brain and I have been so encouraged to see such big changes in him lately.

This isn’t exactly the best picture of Malachi but it is significant to me as his wheelchair is inclined as upright as it will go! His head control has been amazing today. What a big boy.

Every day he does something to remind me how intelligent and “typical” he truly is. This week we saw those moments frequently. In his soccer game on Saturday his team had so many players show up that they had to take turns playing. When it was Malachi’s turn to sit on the bench I told him he had to take a break and let his friends play and he cried big giant crocodile tears. He DID NOT want to sit, he wanted to play! When Malachi cries, it really does break your heart. It is pitiful. We explained to him that everyone had to take a turn and that he had not done anything wrong and he stopped crying.

By the way, he scored two goals this week! Go Malachi!!

He is also getting better at voicing (usually by signing) his opinions and decisions. We present multiple options, giving a pause after each one to allow him to sign yes. He loves the power it gives him. We let him choose what cartoon he watches, what bib he wears, what stuffed animal or toy he wants to take out with him.

His imagination continues to blossom. This week he was pretended to be a dinosaur and I made the mistake of picking him up…that stinker roared  and then bit my cheek and laughed about it. He knows better, but definitely got wrapped up in the imagination moment.

This week we had a hospital day in Chattanooga and Malachi had to get blood drawn. Jake and I are extremely protective over Malachi so he doesn’t often feel pain like a walking child would. He doesn’t trip, skin his knee, fall down. So when it comes time for him to get a shot or get blood drawn he usually cringes slightly, then laughs at the quick pain moment. Sweet boy. This week’s blood draw only took 2 needle sticks, praise the Lord!

Funny side note- while we were at the hospital (for our neurology appointment ironically enough) they decided to test the fire alarms. That meant I had to wind my way through the hallways with my 6 foot giant stroller, opening every single heavy metal door (12 to be exact) that had shut for safety reasons and trying to maneuver the stroller through. By the end I was laughing at the ridiculousness of the timing, and the fact that I was pushing my epileptic child through hallways with flashing lights, saying prayers they wouldn’t send him into a grand mal seizure like last time.

I told Malachi that morning that we would have an adventure after his appointments so we headed to the zoo. It was an overcast day and a decent temperature so I figured it was a good day to try out a zoo trip solo with the two of them.

It was a HUGE success! The cooler weather brought the animals out from hiding and almost every one we saw came right up to the window to see the boys. One of the monkeys gave Levi the stink eye then made a jump for his face. I figured Levi would be terrified but instead he was simply fascinated.

 

Malachi got to feed celery to the camel and pet a goat. We even got the black crow to say hello back to Malachi, much to his delight. I am a sucker and bought Malachi a toy snake from the gift shop (he adamantly chose the red one) and he has loved “scaring” people with it. It has been the topic of conversation everywhere he takes it.

 

 

I can’t really explain it well, but those brain changes I was talking about with Malachi were very evident on our zoo outing. He was so engaged and interested in what was going on around him. He searched with his eyes for every animal. And he listened intently to every word I said about the animals. He was particularly excited about the jaguar because one of the cartoons he watches has a jaguar in it.

We are going to try the aquarium next time around!

Levi has been tolerating his eye patching so much better than expected! I don’t really know how long it takes to see results from the patching but we are praying that the next eye appointment in three weeks goes better than the last one.

Levi is the wiggliest child I have ever met. It is almost unbelievable until you hold him yourself. I am struggling with the comparison game as I look at other babies, realizing how far behind Levi is for his age. I have to keep trusting that God is continuing to heal his brain.

 

Speaking of trusting God, Jake and I continue to believe that God will supply all our needs. He hasn’t failed us yet, and I am confident that He will continue to be our Provider. But we also look for times when God provides opportunities for US to supply our needs. Recently the secretary job at our church opened up and I felt led to pursue it. It is too long of a story to post on here, but after many ups and downs in the process I will now be working at the church office on Monday, Wednesday, and Friday mornings. It is such an accommodating job for our situation as I am able to take both boys with me. We brought some baby gear and one of Malachi’s new adaptive seats to the office and this past week went smoothly. It is so refreshing to have a non- mom thing to do with my brain. And we are so thankful to God for opening that door for me.

 

This week I will be speaking to our Wednesday night women’s class. This is an interesting task, as they already know our story. They have had a front row seat! So I have been praying for God to show me what needs to be said. Last week God gave me some guidance to talk about how quickly we can go from a mountaintop down to a valley. Oh boy, I know all about that experience haha!

My friend Johnny that passed away last week had a verse that he always quoted to Jake and I.

James 1:27  Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress and to keep oneself unstained by the world.

This week I keep repeating this verse over and over again in my head, and as I often do I have been fixated on one word…”unstained”. The more I thought about that word, the more imagery I got from it.

God has placed each of us exactly where we are for a reason. But part of our task as His children is to not allow the world to stain us. We are to be in the world but not of the world.

I started thinking about the ways I have allowed the world to stain me. Like my mentality that I “deserve” things. Or the innate desire to put myself first as often as possible. Our world breeds selfishness and tries to convince us that it isn’t a bad thing.

On Saturday we went to Malachi’s soccer game and then went for a drive. We have a Mennonite community about 15 minutes from us and they sell baked goods, fruits, vegetables, and other crafted things. It is usually packed out on Saturdays but since we were that direction anyway we decided to stop.

As we drove onto their land I could see tiny little toddlers running around with their older siblings and playing on hay bales. One little girl, about 6 years old, shyly smiled and waved to me as we drove by…watching us with such curiosity. The simplicity of the moment was beautiful. That word “unstained” popped into my mind as I thought about how much easier that charge might be for that little girl as she grows up in such an isolated place.

But then I realized that the staining comes from within. The world changes us from the inside out. While they have less influences in the Mennonite community, the temptation towards the things that stain are everywhere. Even Adam and Eve in a God given paradise were drawn to the things that stained.

But God is a God of grace. He knows our nature, and he doesn’t expect perfection. But He DOES expect effort. He expects conscious decisions that bring us closer to Him and further from the world.

Am I giving enough of an effort?

Philippians 4:7    And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

So this week as I continue to word munch on “unstained” I will be praying for God’s peace, that it will help guard my heart from the stains that I may encounter. And I am also praying for sharper eyes, that I can see those stains before I even take steps close enough to encounter them.

May we all do our best to remain unstained by this world.

Much love,

Leah