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This week we started settling into our new routine as Jake headed back to work for teacher workdays. Almost everyone was masked for these meetings and they practiced social distancing so we felt comfortable with things this week. Starting tomorrow students will be returning and our district is not requiring masks. Jake will obviously be wearing one and we will continue to pray protection over him and everyone in that building.

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Side note here- Jake and I are still very cautious about taking the boys out in public, but he and I take turns running soccer practices with the high school girls, running Bible studies, and attending church. We even held a back to school cookout at a local campground this week with about 40 teens. Tonight we had the youth girls over for a “driveway hangout” and plan to do another one on Tuesday night with the soccer team. We social distance as much as possible in these settings and use the common sense God gave us. When the boys do have to attend, they stay in the periphery with one of us. We haven’t been in strict lockdown like we were in March, but still are very cautious.

But there is something that feels so out of control about Jake teaching a whole group of teens in a very small confined classroom. I am thankful God determines our life timeline and not this crazy ‘rona.

New sleep routines took effect and oh boy what a wild ride. Night one was the roughest and both boys stayed up until 2:30am, excited to be in the same room as each other. As the week progressed and both boys learned the new routine things started to get a bit more predictable. I still can’t seem to get both of them fully asleep by midnight and I am up and down with one or the other about 4 times a night but at least we are finding our groove! We are ranging between 4-6 hours a night.

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Levi has abandoned all napping unless I get him in the car seat, so by dinnertime he is pretty savage. But in his pre-maniac hours he has been so sweet. I have been blown away by the small gestures he does all on his own…

When he hears the shower stop he runs into the bathroom to hand me my towel. Seeing that tiny toddler hand shoot through the curtain with my towel is just the sweetest thing.

One morning he went eerily silent and when I went to find him he had gathered all the dirty diapers (5 had collected in the bathroom overnight) and threw them down the diaper chute to be a helper.

When I took out the bathroom trash, he got a new trash bag out all on his own and put it in the can. I mean, even Jake doesn’t do that one!

When he watches a funny video on my phone, he excitedly carries it over to Malachi so he can see it too.

He also picks out Malachi’s favorite toy and carries it over to him, setting it on his lap and holding Malachi’s hand to help him activate it.

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Time and time again he surprises me with his sweet, inclusive heart. And Malachi just eats up the attention Levi gives him.

Malachi has been thoroughly enjoying all of the time we spent at home this week. I try to vary his seating throughout the day so he doesn’t get uncomfortable but this week he rubbed a giant pressure sore/rub burn on his arm while in the activity chair. Poor Malachi wasn’t able to tell me until it was too late.

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He also got his new AFO braces this week but sadly they came plain white instead of the cool colors he was expecting. We decorated them with superhero stickers but Levi keeps peeling them off (shhh don’t tell Malachi- he will be crushed) so we have to find a better way to dress them up for him.

This weekend Jake and several of his friends tackled phase 2 of the therapy pool project. There is only a small window of time when Malachi can swim in the pool due to the sunlight. Even when the pool is mostly shaded the glare from the sun makes him close his eyes tight and he doesn’t enjoy the swim session as much as he does in low light. We have been working on building a roof over the pool and a deck around it for his wheelchair as he grows.

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On Saturday the men worked for 10 long hours and made an incredible amount of progress! Early next week we should get the roof, a railing on the tall side, and some stairs. I will post updated photos next week!

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This week I will have to take the boys to their first Chattanooga appointment since March. I am a little anxious as the hospital building we have to take them to also serves as a walk-in clinic for children. We have been working with Levi on wearing a mask to help prep him for his Cincinnati trip in a few weeks. He is up to tolerating a whole 10 seconds haha.

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Speaking of Cincinnati, Levi’s breathing has been awfully loud this week. My imagination has been sparking about what they are going to find when they get in there. I would not be surprised if they have to do another supraglottoplasty (trim the epiglottis tissue away from the airway). But I am really hoping they will still be happy with what they see. I hooked him up to the pulse oximeter machine this week and his oxygen saturations are still staying in the safe range.

Levi is still working on jumping and it brings me so much joy and laughter to watch him. I captured it on film this week to share with you- hopefully it brings a smile to your face:

This morning in Sunday School with the youth I taught some lessons from the story of Gideon. One of the lessons that I shared with them was one that applies to all of us.

In Judges 7 Gideon prepares for war against the Midianites. As he gathers his large army God speaks and says “You have too many men.” Gideon sends a batch of soldiers home but still God speaks those same words. By the end of the pruning process Gideon is left with a mere 300 men.

Yes, there are explicit reasons in scripture why God did this. One of the biggest reasons was that He didn’t want the Israelites, who were already in a rebellious state of mind with God, to claim that it was by THEIR power that they defeated the Midianites.

But I like to find ways to apply scripture chunks like these to myself and the teens in present day. I am not in a state of rebellion with God or struggling with pride in moments of success. But as I munched on this scripture this week I reflected on times in my life when God has pruned my “comfortable safety net”. For Gideon those men represented power, confidence in battle, comfort. But those are the very things that God wanted to strip away.

Jeremiah 17:7 “But blessed is the one who trusts in the Lord, whose confidence is in Him.”

God doesn’t want us to work in the comfortable, He wants us to walk in faith. He wants us to approach impossible odds with a confidence in Him…not our own might.

I think about the many ways that God has painfully pruned things from my life that I saw as necessary, later to find out the many ways those “necessary” things were holding me back from a life dependent on Him. Pruning hurts, especially when you can’t see the purpose in the pain. But it is such a huge part of a walk with Christ!

There is always a cringe-worthy moment when God calls you to release something that are clinging to. But He sees the greater things that we can grasp if we only simply let go.

I also look at the 300 men that God left for Gideon- they were solid warriors, able to help him fulfill the task at hand. I think about my 300. I think about the friendships in the last two decades that have fallen away, friends that weren’t able to help carry the load that God knew He would bring to our family. But oh how I treasure my 300…those very special friends that pick up the swords and go to battle with me. God knows the size of the battles we are about to face and the very people we will need by our sides.

I want to type more but it is nearing midnight and Levi is wrecking the house around me in a tired rage. I guess that means it is time for us to begin the bedtime games.

Please pray for our family this week as we continue to settle into life. And continue those prayers of protection over our fragile boys.

Much love,

Leah

 

Chasing Contentment

Our little Malachi is growing up! This week we have dealt with lots of meltdowns and had to work through some pretty big 7 year old emotions.

As we prepare for Jake going back to work tomorrow we are trying to reconfigure nighttime routines. On Monday I suggested to Malachi that maybe he could start sleeping in his big boy bedroom all by himself and he had a HUGE meltdown. He sleeps in the bed with me so I can reposition him throughout the night, but lately he has not been sleeping well and I am confident he will wake up Levi if he is sleeping in the same room with Malachi and I.

The thought of being in a different room hurt his feelings so we tabled the conversation and tried it again at the end of the week. We talked it up as the week went on, telling him what a big boy he would be and how it would be a good example to Levi. I also bribed him with ice cream, which in the end was the big winner.

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Last night Malachi slept in his big boy bed for the first time in years! Now I barely slept, anxiously watching the monitor to make sure he would remain safe. With his tone and his seizures he has the ability to fling his body and I am terrified he will find a way to accidentally smother himself. The pillow is a new thing, but with his shunt I just feel like it is more comfortable than laying on the mattress.

He still isn’t sleeping very well, but managed to stay in his bed from 1:30-6! Tonight I will be attempting to get Levi into his bed after he falls asleep. Wish me luck. If I am in zombie mode for the next few weeks you will know why.

Malachi had several other meltdowns this week for various reasons. He has become very vocal if he feels like he isn’t being included and shed some tears this week when we visited with some friends. I have to say that this is one of the hardest things for me to manage as a special needs momma. It makes me so cautious to not take him into scenarios where he can’t do the things everyone else is doing. But there is also the balance of letting Levi do those things with friends. It is such a hard balance to find.

Both of the boys have sincerely missed hanging out with other children. We spent some time around cousins this week and seeing them light up reminded me of how important playing with other kids is.

His final high emotion moment was on Friday when we went to pick up his new AFOs (braces). He was supposed to get these at the beginning of July but as we were loading up to make the drive they called and asked to reschedule. The make-up appointment was Friday and he was so excited to get his new shoes. We ordered superhero stickers several weeks ago to decorate them with and he has already picked out which characters get to go on them.

We made it to the appointment only to find out that the gentlemen had accidentally left them in Chattanooga. Malachi’s excitement turned to disappointment when I told him he would have to wait a few more days to get his new shoes. He was vocally mad when we got home empty handed so we took a few stickers and put them on his current braces to give him something to be excited about. That worked like a charm and he was content with the gesture.

Although dealing with his emotional swings is new territory for us, it brings my momma heart so much pride. I love to see him be so opinionated and vocal. I love to watch him make the effort to have his voice be heard by others. When we were freshly home from the hospital seven years ago Malachi was almost too “go with the flow” and didn’t even cry a lot when painful things happened. Watching him form opinions has been so encouraging.

This week I have been working on paperwork to officially homeschool Malachi. Students with disabilities are annually given an allotment of funding to help the school system provide them with a free and appropriate public education. In the state of Tennessee there is a special program where students with disabilities can homeschool and receive the child’s allotted educational funding on debit cards to be used for curriculum, therapies, tutors, etc. We are working towards this route for the school year as in-person learning is not an option for him and remote learning wouldn’t meet his unique needs.

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Levi has officially become a toddler tornado. Our house is a total wreck within 5 minutes of him being awake. His energy is fascinating to me.

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And he has developed an obsession with his hats. Which is totally okay with me because he is a cutie. He has strong opinions on what he wears each day and is slowly morphing into a tiny control freak, but we are hoping that is just a phase.

Jake and I both have continued to be in a state of mourning this week as we count down the days until he returns to work. Life is so complicated but with both of us tackling it, it didn’t feel so bad. I am about to be abruptly reminded of how intense our days can be. Even thinking about it has been sending me down the rabbit hole towards some negative thoughts and attitudes. But my radar has been going off as I head those directions, reminding me that I have to stay focused on the good.

Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent think on these things. 

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This week I will be taking a deep breath and repeating this verse over and over again, imprinting it onto my heart. Contentment is a choice. It is a path you have to choose to travel. My prayer is that God continues to grant me a heart of contentment no matter how complicated our life may get.

Philippians 4:12-13  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.

Please join us in prayer this week that we continue to draw strength from God instead of trying unsuccessfully to manufacture it ourselves. And please pray a hedge of protection over our family as Jake re-enters the world.

Much love,

Leah

Green Pastures

Our little Levi’s next surgery is officially on the calendar for August 28th. We will be making the trip back to Cincinnati for several pre-op specialist appointments followed by surgery that Friday.

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This is surgery number 26 for Levi and will go very much like the previous ones. When we sign waivers in the pre-op room we check all the boxes for possible interventions. There are actually two parts to each surgery- a microlaryngoscopy and a bronchoscopy. During the microlaryngoscopy portion sometimes they need to trim his epiglottis, sometimes they do a balloon dilation in his airway to break up scar tissue, sometimes they do nothing but look and evaluate. But in addition to those interventions a pulmonologist cleans Levi’s lungs during the bronchoscopy and sends the fluid from them off to see if there are food or drink particles making their way into his lungs.

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We don’t expect to be admitted overnight and will likely try to make the drive straight home from the hospital that day if he is stable and doing well. Sometimes I have to run him on oxygen for a few hours so I keep him hooked to a hospital grade pulse ox for the 6 hour drive home to Tennessee. He typically runs a fever for a day or so after, which is an expected result of the bronchoscopy portion of the surgery. When we spoke with the surgeons last year the next expected major step for enlarging his airway would be removing the tonsils and adenoids but that wouldn’t happen this go around and would be scheduled for a later date if they decide it is truly needed.

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Obviously the BEST news we could receive is that his vocal cords are no longer paralyzed and that God has healed him! Unfortunately all of the clinical signs point to that not being the case and we fully expect them to say that things are the same as the last surgery. As long as we continue to avoid the trach route we are happy!

In order to find out if the cords are still paralyzed they have to send a camera down his nose when he is fully awake, which is a traumatic experience for both of us as I have to do the bear hug to keep him still.

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Because of COVID precautions Malachi will not be permitted in the hospital, and truthfully we wouldn’t want him in there anyway! It looks like Levi and I will be making the trip solo and Malachi and Jake will stay in Tennessee. Levi will also be given a COVID test pre-op.

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And things could likely change between now and then based on the spikes happening all over the country! But for now this is the plan we are going with. It will require Jake taking a few days off of work to sit home with Malachi since we aren’t sending him to school this year.

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Speaking of the pandemic…

Our area is starting to get a little more saturated with cases. Many of the stores we used to frequent are now requiring masks nationwide and we are thrilled! I was able to run into one this week for a few minutes to pick out some fresh produce; we have been doing grocery pick up but there is something about inspecting and picking out your own produce. I was able able to snag some fresh salmon from the seafood counter which was a real treat. And side note- still no bears this week! When we cook salmon we typically get a bear visit but not this week and we are loving it.

Malachi has been doing SO GREAT this week! His seizures have calmed down tremendously from last week and he even slept for 7 whole hours straight one night. What a blessing!

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All three of the Carroll boys got haircuts this week and now looking sharp! We have a friend that comes out to the house to cut hair for us.

 

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We took a few weeks off from horseback therapy and Levi hasn’t adjusted too well to going back to the barn each week. For the last two weeks we have dealt with a lot of tears, but hopefully with the routine back in place he will be able to adjust back to his normal, happy self. I was able to snap some cute pictures once we got him calmed down. We think the therapists masked face had something the do with the meltdown so we gave her permission to remove it for his session.

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Malachi is a rockstar cowboy each week. His favorite part is trotting on his horse, Farley. He has to sign to the horse when he wants him to go by tapping the horse gently on the neck.

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It wouldn’t be a Carroll week without a goofy story. You likely don’t know this about me, but I am not a fan of squirrels. When I was in 8th grade I went to Washington DC with a friend and we had heard that the squirrels were so used to people they would eat out of your hand. Of course, we decided we needed to experience this phenomenon and spotted a squirrel to approach. We squatted down and called it over with a handful of chips and when it turned to walk towards us there was clearly something wrong with it. As it ran towards us it couldn’t support the weight of his own head so it flopped to the side, banging on the ground as it ran frantically at us. His eyes were dilated and he was foaming at the mouth. It was the stuff nightmares were made of!!

We got up and sprinted away from the freaky beast and since then I haven’t trusted squirrels. I see them all as tree rats, one step away from the foaming mouth.

This week I was home with the kids and looked outside at the treehouse and spotted a squirrel. The deck part is 12 feet off the ground and we have never had a furry friend make it up there before. But here he was, perched by the window eyeing our bird feeder. Since Jake was gone I decided to sneak over and take a picture of it to show him later. As I crept over he disappeared out of sight, and when I approached the window he lunged and flew across the window…I have no idea what he is thinking because at that point it was at least a 14 foot drop to the ground and there is no window ledge.

Somehow he used his freaky fingers to cling to the ledge of the siding and got himself back over to the deck. But as you can imagine I wasn’t expecting him to fly by my face. Oddly enough I caught in on video, but I am too embarrassed by my horror scream to show it to you haha. Instead I will share a still shot from the video and you can use your imagination on the rest.

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Levi witnessed his mother’s craziness and now loves to re-enact the whole scene. He has also been re-enacting mom sneaking out and looking for the bears from the treehouse. He claims to see several and when I ask him what the bears are doing he says “not much”. Goofball.

Oh and two words to sum up the bit of chaos we have had this week: potty training. Game on.

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This coming week is our final week with Jake home all day. I am selfishly mourning the loss of extra hands throughout the day. It has been such a big blessing for our family to have him home for the last four months. We could really use your prayers for health as he plunges back into a germy environment.

As I reflect back on these weeks at home as a family I can’t help but think of the beginning verses in Psalm 23:

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.

Over the last four months God has used a pandemic to give our family a much needed break…one I don’t think even we recognized we needed. Initially we feared the impact that stopping therapies would have on our boys, but being able to swim in the therapy pool, play as a family, and spend our time at the house has turned out to be better than any therapy we could chase for the boys. They have both made significant gains and we have connected as a family.

I love the wording of the verses above. That second line: “He makes me lie down in green pastures…” that one makes me laugh a bit. Sometimes we get so sucked up in the busyness of the world that we don’t even recognize the green pastures surrounding us. And like a shepherd makes his sheep lay down and rest, the Lord does the very same thing for us! Just like little Levi needs his quiet time each afternoon so he can rest, God too recognizes when that rest is needed in our lives.

This week I am thankful for the Shepherd. I am thankful that He knows the route to all the green pastures, still waters, and right paths. And I am thankful that He knows me well enough to see when I am weary and gives me the opportunity to lie in those pastures. I am thankful for a God that knows me better than I know myself.

Please start joining us in prayer for Levi’s upcoming surgery. It is not a risky one in of itself but the idea of him traveling and entering the hospital for any length of time during this pandemic is not ideal. Pray protection over Jake as schools are about to open in our town. Pray for wisdom for me to process how to handle the transition back to being a solo stay at home mom.

May you allow the Shepherd to lead you this week.

Leah

 

Dark Clouds

We are continuing to prep our lives for Jake returning back to work. We have rearranged one of the spare bedrooms for Malachi, Levi, and I to sleep in which will give Jake full access to the master bathroom and closet in the mornings to get ready for work. He has just two weeks left of summer!

We set up a new big boy bed for Levi with the hopes that we can successfully carry him over to it each evening. Bedtime is a little wonky for our family, which is okay with two parents helping but very difficult for just one of us to accomplish.

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Levi falls asleep around 11 each night and by 11:30 we hook him up to his nighttime g-tube feeds. The pump runs from 11:30p-7a but the biggest issue is that he moves SO MUCH while he sleeps. You have to constantly wake up and check the tubing, making sure it hasn’t accidentally gotten tangled on blankets. The crib was working well but now transferring him in and out of it has become too much of a challenge. The other big issue is that he regularly rolls or sleepwalks off the bed at night, and the pump bag stays on the bed, leaving very little tube length before ripping his g-tube out of his tummy. You have to have eyes and hands near him the entire time he is asleep.

But our sweet Malachi doesn’t go to bed until around 1am. And getting him to bed is a challenge, as that is one of the most seizure friendly times of day for him. So Levi will be unsupervised for a bit after he is hooked up and I am still in the living room getting Malachi calm enough to sleep. We were able to get a bed for him that has very high sides, which we are hoping will prevent him from rolling out and dislodging the tube. I also have a baby monitor we will keep on him at all times.

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Right now both of the boys sleep in separate rooms, each with an adult. At one point several years ago Malachi was sleeping in his own bedroom, but with his positional struggles and nighttime seizures I just feel more comfortable having him close to me. I am constantly waking up and moving his position to make him more comfortable when he starts to stir. I think about being stuck in the same position all night and how uncomfortable that must be for him, and I do my best to switch him up as much as possible.

My fear in putting them in the same room is that one will keep/wake the other up and my very limited sleep will become even more limited. But I am sure we can figure out something that will eventually work. Hopefully haha.

We are trying hard to not think about the potential germs Jake will be bringing in each day and are continuing to focus on faith over fear. Without Jake teaching we wouldn’t have the insurance that the boys both rely on. And obviously the loss of income isn’t manageable for our family, so we just have to continue praying and believing that God will protect our family.

Malachi is losing all of his baby looks at turning into a big seven year old! He is cutting some big molars and we suspect his front teeth will be coming in soon. He only has one real baby tooth, the rest are all capped, so getting new teeth is a pretty big deal. His seizures have amped up a bit, and we are assuming pain from the new teeth has something to do with it.

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We had some wonderful friends from church offer to sit with the boys this week, and Jake and I got the chance to go out on a date! Aside from last week’s outing, we haven’t been in a real restaurant since March and we still don’t feel comfortable being inside public places right now. We found a restaurant with a large patio area and snagged a table in the corner away from everyone else. The waitress stayed masked and we felt safe with the setup.

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Whenever we get to leave the house without the boys it just feels so unnatural. Even the movement of getting out of the car and walking directly into a place without a 5 minute unloading process is a real treat. And eating a meal without toddler demands and seizures is refreshing.

After dinner we drove over to our alma mater and walked around the campus. We reminisced as we passed each of the buildings, remembering friends, professors, and silly stories. Jake and I both worked on campus during our four years there and know the place inside and out! I was responsible for paying for my years at school and consistently worked 40 hours each week in several different roles…the computer department, campus safety dispatch, a special needs program at a local church. Between Jake and I we have enough stories to last a lifetime at that place! Here is a photo from the college days.

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We went into the gym to check out the famous broken bat from when Jake and his fraternity broke a world record, playing 101 straight hours of softball. If you ever want to hear some hilarious stories from those four days just ask. Jake ended up in the hospital at one point and had temporary amnesia around day 3 from sleep deprivation. He didn’t even remember how to swing a baseball bat even though he had already been playing for three whole days!

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But one of my favorite memories was from a random park bench in the middle of campus. During our freshman year we both stayed on campus and picked that specific park bench to meet in the evenings to do a Bible study together.

We took a few minutes to sit at the bench this past Friday night and it flooded back the memories. The bench was much more worn than it used to be, weak and flexing under the pressure of the many years it has been in the elements. But it was bolted to the same concrete square that was there many years ago…the same strong foundation.

I couldn’t help but smile thinking back to that young, careless couple that used to sit on that bench all those years ago. And just like the bench, the elements have changed us. This challenging life has made us almost unrecognizable, yet we still remain firmly secured to that same foundation that God placed under our feet all those years ago.

Our marriage has been through storms that few others have to experience. But God has so graciously carried us through each one, allowing our relationship to remain firmly connected and rooted in Him. I think about the months and months we have had to be apart due to one child being in the hospital. I think about the hidden challenges that come with raising a special needs child- the jealousy of a “normal” life that Jake gets to escape to each day when he is working. Or the resentment that breeds when one parent gets more sleep than the other.

Even now, having to make long term plans to sleep in separate rooms to protect the health of the boys. Our marriage tends to fall secondary to our responsibilities as caregivers, not parents. Our primary goal is simply to keep these boys healthy and alive. But right now that is the calling God has placed on both of us, and we choose to focus on contentment in this unique calling instead of focusing on the things we are missing out on.

I have been personally struggling this week with a few big emotions. These past few months have been wonderful for our family. We haven’t had a medical emergency since January, thus breaking all previous records. As I drive around this beautiful town God has placed us in, and as I look out the back deck of my comfortable home at the vast mountain my mind keeps reminding me that our tragedies aren’t over. At some point these mountains and sunsets will again be replaced with hospital walls and windows that don’t open.

I am struggling between soaking in the calm moments, but also sensing that I still have yet to experience the “worst day of my life” and that it could come at any moment. We have experienced so much pain and tragedy, yet I realize that we haven’t been through the biggest storm yet…the loss of a child.

When you are raising a medically fragile child you can never fully relax. The harsh reality is that we attempt to live a normal looking life in between medical emergencies, knowing that one of those very emergencies will eventually take his life. It will make you crazy if you dwell on it too much. I guess this week I can’t seem to shake that dark cloud.

It is in weeks like this one that I have to turn to God’s word and seek His peace.

Philippians 4:6-8 “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. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things.”

This week I am praying that God continues to cover me with His peace and guard my heart and my mind when my earthly emotions trump my faith in His plan.

God bless,

Leah

 

Humility

Life is picking back up for our family, but we are still cautiously keeping the boys tucked at home as much as possible. We take turns fulfilling all of our obligations but the boys are going a little stir crazy at the house all the time. Right now between Jake and I we are leading 6 Bible studies in the evenings throughout the week and running two soccer practices! We run some of the studies in our basement and have the teens enter through the basement entrance so they don’t share air with our medical marvels.

On Saturday we went to check out a new BBQ place by the river; we saw online that they had an outdoor seating section that was isolated enough for us to feel comfortable taking the boys for an escape. We arrived right when they opened and no one was there but us, so we sat in the corner of the restaurant and enjoyed our food in the air conditioning. The boys were both pretty pumped about the adventure. It was a brief moment of normal.

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Jake will head back to work at the beginning of August and we will adjust to a new normal. With him being in such a germ susceptible setting we will have to function at home a bit differently. He will come in from school through the basement and shower downstairs, tossing his clothing straight into the washer each day. He will also be sleeping in a different bedroom by himself to keep him from breathing on the kids all night just in case he contracts something.

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In previous years if Jake started to come down with something contagious we would book a hotel and he would move out for a bit to protect the kids. But one of our quarantine projects was finishing a bedroom in the basement so he has a place to stay, which will save us some money!

Either way, it will be a big adjustment for our family as we go from 24/7 family time to Jake being exposed to the virus daily by hundreds of kids. We are still trying hard to keep our faith bigger than our fear!

We have obviously decided that Malachi will not be going to school this year, as the risks outweigh the benefits. We are still trying to make a decision about therapies for both boys.

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This week Malachi and I took a day trip to Vanderbilt to meet with the spine and hip surgeons. Jake graciously made sure I had enough naps in the days leading up to the road trip so I could be alert on the road. It is only 3 hours there and 3 hours back, but when you run on fumes all the time even those short distances can get dangerous. I downloaded some new songs on my phone and turned the drive into a karaoke party, much to Malachi’s enjoyment haha.

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Malachi’s spine is still at a 43 degree curve, which is only one degree more from where it was at last summer. For now it isn’t severe enough to require surgery, praise the Lord. The spine surgeon worries that a growth spurt may affect him in the negative direction but for now we are still prolonging that massive surgery.

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Malachi’s x-rays are so unique. The tubing that runs down his neck and piles into his belly is his brain shunt- it takes spinal fluid out of his brain since his brain bleeds clogged the original path of the spinal fluid. It is extra long so it can grow with him as he gets taller, thus avoiding an unnecessary brain surgery to replace tubing. You can also spot a very small bright circle next to his heart. That is the metal coil we placed in his heart procedure several years ago to close his PDA.

Malachi’s hips are still dislocated and are literally as bad as they could possibly get. The tops of his femur bone have not only migrated out of their sockets but are now up above the hip entirely. You can actually feel them through his booty. Getting them back into socket is not even a reasonable option, and right now them do not seem to be causing him pain. If they start causing pain we will have to do a major operation to saw off the head of the bones but obviously that is a last resort. For now we continue to wait and watch annually with both surgeons.

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I did talk with the orthopedic surgeon about Malachi’s legs turning colors when he sits in certain positions, but he said we shouldn’t worry too much about that as long as it remains positional. Malachi will also be getting new AFOs this week which will help cut down on the pressure sores he has been getting on his ankles.

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Malachi absolutely loved being able to go on a trip with just mommy and no Levi. He especially liked when Levi started crying because he wasn’t allowed to go.

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They sure do love each other, even though sometimes there is some serious jealousy between them. Levi has been asking to “hold” Malachi while they watch TV together.

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Malachi has been swimming like a pro lately with his primary goal being to get to Levi. We have been so impressed with his swimming skills this week; I took a brief video for you:

Malachi is such an exceptional kid! I wish you all could spend a day with him- it would change your perspective so much on children with disabilities.

And little Levi sure has been a firecracker this week.

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He mimics whatever he sees his daddy doing and I came out to find him settled on the couch reading daddy’s Bible and “taking notes”.

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There is a verse in the Bible that God loves to bring to my mind often, and usually in a very convicting manner haha! But oh the wonderful challenge that it is for me!

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

This verse challenges me to strive for the humility of Jesus Christ…a humility that isn’t natural or easy to do. Humility is something that I think many Christians have lost sight of in the last several months. We have morphed into an every man for himself mentality and forgotten the challenge to be DIFFERENT than the world, putting others above ourselves.

I have read so many social media posts about masks, social distancing, newly enacted rules. Arguments flare up, each side adamantly arguing their stance both unwilling to budge on their beliefs.

As Christians we have been given a perfect opportunity to live out Philippians 2 the way Christ would have. Yet for some reason we are allowing our egos override our humility. Humility does not equal weakness, nor does it make you an ignorant pushover. Instead it speaks to a self-centered world that like Christ, we are going to regard them as more valuable than ourselves. It speaks to others that we are living for God rather than our own selfish desires.

What is more important to us as Christians…living the way we want or being a mirror image of Christ, living the way He did?

Don’t let the chaos of this world change the standards God has set out for us. Instead see them as opportunities to live out the word and desires of God.

This week let’s all try to find those selfish moments in our day and replace them with the humility of Christ.

God bless,

Leah

The Talents

Last Sunday afternoon we loaded up and headed out on a retreat with our youth group! There were definitely some noteworthy things during the retreat that I would like to share with you in no particular order.

#1 Malachi and Levi absolutely loved it. They have been locked in the house for so long that the interaction with others was extra special. They were exhausted by the time bedtime rolled around. We brought a king sized mattress from our house for me and the kids to crash on and set up a makeshift bedroom in a living room area of the main house. No medical emergencies or concerns the entire time we were there for the Carroll boys.

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I had some wonderful, godly friends take time off of work to come and help with the boys. This was the first time I have been able to sit in the worship services with the youth at camp, and what a blessing that was to me on so many levels.

We also had a four month old baby along for the adventure, and Levi in particular was pretty smitten with him.

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Interestingly enough, when Malachi got to hold the baby for the first time Levi grew very jealous and possessive of big brother Malachi.

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#2 The logistics of the camp worked out wonderfully! We had one snake bite from a teenage boy that tried to capture one but other than that we were injury free. With a total of 52 people there one injury isn’t so bad!

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There were a few new things to navigate along the way, like how to feed a group that large on the road in a pandemic. We ended up finding a local park and creating a makeshift Chick-Fil-A buffet using the wheelchair ramp.

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#3 GOD SHOWED UP! Within the first hour of chapel the Holy Spirit moved. We watched as these kids tasted the spirit of God, some of them for the first time ever, and it was a beautiful scene.

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We immediately recognized that God had some big things in store for the week, and of the eight years Jake and I have been serving as youth ministers, this camp hands down was the most life changing. Our final service lasted over 4 hours with the kids sharing testimony after testimony about the things God was revealing to them. What a faith strengthening scene to watch.

We are still winding down from camp and processing where to go from here. The kids tasted the Lord and now crave that feeling again. Jake and I have the wonderful responsibility to cultivate that within each of them and guide them as much as we can. I am sure I will be sharing that journey with you often in the coming weeks and months.

We came home on Wednesday afternoon and before we pulled into the driveway we already had youth calling to see if they could come over to talk more about God! What a blessing! We would love to open our home again for Bible studies and dinner for the kids each week but are going to spend some time in prayer and see if that is the direction God wants us to go right now.

On Thursday Jake’s family came into town to celebrate the fourth of July together. We have had a weekend full of cousin time swimming in the pool, splashing in the river, and other fun adventures full of laughter.

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And more babies!

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We attempted some sparklers and Malachi was a big fan.

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And then we attempted some fireworks and those didn’t go over too well.

And I know I have shared a similar video with you before, but each time I see Levi helping Malachi without being prompted it warms my heart. I pulled out my camera in time to catch him helping Malachi play a game with him; the look on Malachi’s face is so sweet:

This week I will be headed west with Malachi and taking him to Vanderbilt to see both the hip and spine surgeons. I am becoming anxious about this appointment. For children like Malachi, surgeries in both of these locations are common and extremely painful. These surgeries are BIG ones with months of recovery and regression of skills. We are praying that we can ward them off just a bit longer, but then part of me wonders if it would be logistically better to tackle them while he is still small in stature.

I will be making the trip solo with Malachi, and usually we go up the night before and spend the night. But with the COVID-19 being so prominent in that area of Tennessee I will be attempting to make the trip there and back in one very long day. I am in a constant state of sleep derivation and I always worry about being able to safely drive when I am running low on fumes. Please put my alertness on your prayer list!

While it was such a joy watching the teens at camp, it was also refreshing for my soul. Being able to worship with something other than the radio blessed my heart so much. I am one of those that connects strongly with God through worship so not being able to attend church every Sunday has left me craving that opportunity again.

Lately I have been really thinking about my purpose here on earth and what it is that God is calling our family to do next. I think about the day I stand before God- what will that conversation be like?

In Matthew 25 we find the parable of the talents. A talent is a measure of weight, like a talent of gold that held a high value. A man is going away on a journey and he entrusts three of his servants with different numbers of talents while he is gone. Here is a breakdown of what each of the servants did.

Servant #1: received 5 talents and immediately went and traded them to earn 5 more.

Servant #2: received 2 talents and gained 2 more.

Servant #3: received 1 talent and went into the yard and buried it to keep it safe.

The master comes back after his long journey and calls the servants to him to account for his talents. The first two servants presented their original talents plus their newly acquired ones. The master says to them “Well done, good and faithful servant. You were faithful with a few things, I will put you in charge of many things; enter into the joy of your master.”

But when he comes to the third servant the conversation is a very different one. He hands him back his original talent and explains that he was afraid and hid it to keep it safe. He says to the master: “See, you have what is yours.”

But the master is very upset that the talent hasn’t experienced growth while he was away. So unhappy, in fact, that he takes the talent from the servant and gives it to the one who has ten.

As I read the parable I can’t help but think about what I am doing with my talents. Am I taking the measure of faith God has given me and using it to produce more Christians, that is, to share the gospel with others and watch God’s kingdom multiply? Or am I keeping my faith buried…mine and only mine to have and to hold and wave in the air when the master returns?

Are you ready to stand before the Master and explain what you did with the talents He trusted you with?

I think about those first two servants and the excitement they must have experienced when their portions doubled, knowing that they would have something exciting to discuss when the master returned. Likewise, are we excited and anticipating that conversation in the same manner?

Or is our faith in that deep hole in the yard? Something WE know is there, but remaining in that safe, unfruitful spot so we have something to hand back to him when we come face to face.

Our faith is meant to be contagious. It is meant to experience growth…to multiply and to explode, impacting all of those around us in a mighty way.

This morning  7 of the youth stood in front of the church and shared specific things God is placing on their hearts. While they spoke, there was a radiance on each of their faces, the radiance that the Bible mentions adorned Moses’ face after he met with God on the mountain.

I think about the words in Psalm 34 that say “They looked to Him and were radiant, and their faces will never be ashamed…O taste and see that the Lord is good.”

On the faces of those teens I saw a new boldness, a new resoluteness that I have never seen before. They tasted the Lord this weekend and oh how sweet a taste they received. My prayer for each of them is that they realize the strength and power of the talents God has handed them. And that they recognize that we are called to grow those talents, not tuck them away to hand safely to God when we meet Him face to face.

And I will continue to pray over my talents, watching and waiting for an opportunity to watch them grow.

Much love,

Leah

 

Fear Is A Liar

This sounds a little unbelievable, but we were so busy this week I didn’t take any photos of the boys! I will be more intentional about my photo taking this coming week. The busy nature of the week took me back to the pre-COVID days as we strapped on different hats to tackle the always growing to-do list.

In our role as soccer coaches, we decided to have the girls host a blood drive for the American Red Cross. Their job was to recruit people to give blood and we set our goal at 30 donors. There is a nationwide blood shortage right now, and seeing as our family has been on the receiving end of many lifesaving transfusions it seemed like a good opportunity to give back.

We hosted the drive at the church where I work so I parked myself in the office and caught up on some office work while the donors came and went. We had nearly 45 people come through the doors to give, but several were unable to due to medical conditions or medications. Jake came to donate so we locked the boys in the office with me while he gave. He has a history of passing out after giving blood but not this time thanks to some apple juice chugging!

At the end of the drive I asked the lady if we had met our goal of 30 donors and she said we only had 29. Shockingly I passed their screening questions and got to be donor number 30! I have had a history with clotting disorders and received a transfusion after Malachi that didn’t mesh well with my blood, causing issues (kell antigen issues for any of my fellow medical nerds). I have always assumed I would not be able to give, and there is still a chance they won’t be able to use my donation but it’s worth a shot.

If you are able to donate blood, please consider doing so. Every blood donation saves up to three lives. It takes about 30-40 minutes to go through the whole process, and the actual blood donation part takes less than 10 minutes. If the Carroll clan can find time to do it, I am confident many of you can as well. I am not a fan of needles but when I look at my sweet Malachi and know how many times he has been stuck with needles it makes me feel like the momentary pain is worth it to save lives like his…if he can get stuck without whining surely I can too.

Next we put on the youth pastor hats. Now let me dump some emotions onto you for a quick second.

Back in April we canceled our reservations at our annual youth camp. We prayed about the decision and just felt uncomfortable taking the group to a camp with 400 teens from several other states while the virus was still a concern. But we felt led to do something with the group in place of the large camp.

After searching and praying, we found a rental farm 1.5 hours from here that would be perfect for a social distancing youth retreat. Everything is outside except for the food prep and they stay in tiny little cabins with one other person. We made the reservation with the fine print saying that we could cancel on June 14th without penalty if COVID was still a concern.

As June 14th rolled around Jake and I really tried to evaluate if it was a good idea to continue to pursue taking the teens there. In our rural county we have had 38 total cases of COVID but usually only 6ish active cases at the same time. For some perspective, Chattanooga is just 45 minutes away and has had a total of 2,321 cases. Overall our little sliver of God’s country has done very well. We felt led to continue to pursue the youth retreat and to place our trust in the hands of God.

Easier said than done.

I am writing this entry at midnight on Saturday evening as we won’t be able to access the internet at our rental. And all week long as we prep for this camp I can’t help but let fear creep into my heart. We are obviously taking Malachi and Levi, and will have a total of 52 teens and chaperones in the group. We have taken all the precautions you can possibly take- thermal temperature scanners, clorox wipes, hand soaps, hand sanitizer, etc. But there is that lingering thought of what if…

Each time I let the “what if” game begin I know in my heart that the devil is behind it. I can tell you with certainty that God has led Jake and I to make this retreat happen, and there is a kingdom purpose in it. So why do I continue to worry about God not protecting my family as we walk a path He has guided us to?

Fear is a crazy thing. And I have to keep reminding myself that fear is not of God. And it has proven to be one of the devil’s most successful tactics in my life.

I have to keep reminding myself that even if the worst case scenario happens- even if somehow my family contracted this virus and our sweet Malachi or our wild Levi passed away, NOTHING will happen to us that is outside the will of God. And each time I remember that simple fact, I am able to breathe that deep air again and relax.

When we start to remember that this world isn’t about us, but rather about the things God can accomplish THROUGH us your perspective tends to change a bit.

I firmly believe that God has already determined the day he will call Levi home. God has already determined the day Malachi will run and leap into the arms of Christ. So while we need to honor God by making wise decisions, we also must find rest and comfort in the timeline of God.

Daniel was thrown into the den, but it wasn’t the day that God had chosen. He shut the mouths of the lions. Even the wind and the waves obey Him.

When we walk confidently in the paths God guides us to we honor Him. So this week I am working on trusting Him and taking my steps with boldness.

Our theme for this week is “Be Bold” with the key verse being Hebrews 10:39: “But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved.”

In one week we have gone from not taking the boys outside of the house to loading them up with 52 teens and heading into the unknown. We also went from grocery curbside pick ups twice a month to me having to me making several in store Wal-Mart trips to track down 45 pounds of chicken, 60 hamburgers and 80 hot dogs (during a beef shortage), and enough food to feed 52 people 9 meals. Not to mention the toilet paper a group that size will need for a week. Let the games begin!!

And just to clarify, when we return home we will still be locking down as much as possible. There is a such thing as godly wisdom that we have to pray for. We are only making these exceptions this week because we genuinely feel called by God to do so.

Please join us in praying for protection over our entire group of 52. Pray that this is a life changing week for these young adults and that these next few days would become a part of their testimony.

And pray against the seeds of fear the devil keeps trying to plant in my heart.

Finally, this week marked the anniversary of Malachi’s Chick-Fil-A movie. I cry every time I watch it! I know we have a lot of new readers and I thought you might enjoy seeing the sweetness for yourself: https://youtu.be/_FqXgxnfzd4

Much love,

Leah

The Challenged Life

This week we begrudgingly packed up the boys and went to a necessary appointment for new orthotics for both boys. Malachi wears something called Ankle-foot-orthotics (AFOs) on both feet to keep his feet from folding up due to his cerebral palsy. With his CP his brain is telling his ankle ligaments to pull tighter than they should and the ligaments blindly obey the brain.

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His current AFOs were getting tight on the ankle bone and starting to rub pressure sores on his little ankles. It was about time anyway for him to get molded for a new set so we made the appointment.

Levi’s cerebral palsy also manifests in his ankles, but in the complete opposite way. Malachi’s ligaments pull too tight, but Levi’s brain is telling his ankle ligaments to relax making his ankles loose and floppy. We noticed that he is developing some pretty intense callouses on the insides of both feet. We talked with his doctors about orthotics to help keep his ankles and feet in the position they are supposed to be in and they wrote a prescription to be fitted for them. Levi won’t have AFOs that go tall like Malachi’s, but instead his will look more like a shoe insert that extends just above the ankle.

You can really see that loose ankle issue in this photo:

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It will take a few weeks to get them custom made and then we will go back in to make sure they fit right. Malachi was super excited about picking the theme that will be printed on them, but with our new orthotics company the options were very limited. We went with a fun base color and we will be adding some vinyl superhero stickers to make them just to his liking. He is oddly picky about which superheroes make the cut so we will see what kind of hodge podge mix we end up with! Seeing him have strong opinions on things brings me so much joy.

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Levi immediately kicked into medical PTSD mode when we entered the office and started crying. We were able to calm him down pretty quickly with some medical gloves and silly music on mommy’s phone. I was very thankful to have Jake’s extra hands to help with this appointment.

Jake and I coach soccer in our small town and our open fields have started for the season. We are being extra cautious with these, splitting the girls into small groups and keeping our distance from them as much as possible. My mom has been helping watch the boys during practices, but the weather has been so beautiful we brought them out to play in the grass for one of them. The fresh air and different environment was a welcomed change.

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Malachi has been on an antibiotic to “reset” the bacteria build up in his tummy. We were trying to find a way to relieve the tummy pain he has been having and it seemed to help a bit. But during that time on the med we did not swim in the pool (I will let you use your imagination as to why on that one). They were both thrilled this week when they got to take a dip again!

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We are working on getting a covered pavilion over the pool, but for now we are limited to dusk swims when Malachi can tolerate the sunlight in his eyes. The only problem with that is that the bears have been making their appearances earlier and earlier now that the blackberry bushes that cover our property are in full swing. We have had at least 5 bears make their way down our road (that we or our neighbors have laid eyes on) just this week. So our dusk swimming adventures are not as relaxing with momma on high alert!

Levi has been keeping us on our toes like always. He is heading into a frequent tantrums phase, which is mentally exhausting. We try to keep him as preoccupied and busy as possible and give him lots of chores to do.

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And we are continuing to work on his food consumption. He is trying a lot of foods but still unable to swallow them. With this bowl of cheerios he crunched them up then took them out of his mouth and wiped them on a napkin. We really have to let him call the shots on what he will actually swallow. With his vocal cords paralyzed open he is not able to protect his airway. So if a food makes him nervous, it makes us nervous too!

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We just continue practicing, believing that one day those cords will start moving again.

And let’s take a minute to admire Malachi’s insanely long eyelashes.

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I have been trying to organize the piles of things that accumulate, one of which being the medicine syringes. Every special needs mom has their favorite type and clings to them like gold! Good syringes that don’t fade the numbers over time are hard to come by.

As I purged the stash of ones that aren’t legible anymore I started doing the math on how many we go through in one week between the two boys. The end result is 98. And cleaning them is a bear.

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We received such a sweet and touching gift this week from a blog reader in Korea! She explained that she had taken some art classes and wanted to draw a picture of Malachi for us.

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What a precious gift for our family! And how perfectly does it capture our Malachi- spiderman shoes and all! I showed it to Levi and asked him who it was a picture of and he immediately responded “Chi Chi”.

But the picture is treasured for several reasons…

Through it I am reminded of the mysterious ways of God.

God has taken the testimony of a 7 year old boy who can’t walk or talk and used him to reach someone in Korea. That isn’t something I could ever do- it is an undeniable God thing.

But it also has reminded me that hope in Christ is contagious. This photo represents the Malachi my mind sees. I see the typical boy that is trapped in his broken body.

I had convinced myself that I was the only one who saw him that way….that could look past his “cant’s” and see him as whole. But a complete stranger in Korea sees him through my same hope filled lens. If there is one other person that sees my Malachi as whole then surely there are others.

When we start to see children like Malachi stripped away from their earthly brokenness we start to see them through the eyes of their Creator.

When I was in the NICU in Cincinnati with Levi I connected with a family and meeting them rocked my world. I remember the initial conversation I had with the mom, as I was pretty thick in the middle of a pity party for myself over our situation.

I asked her about her hospitalized child and she began to tell me about her unique and amazing family. She explained that she had 17 kids (WOWZAH) and that the majority of them had been adopted internationally and were considered special needs, mostly for physical reasons.

The daughter in the hospital at that time was named Madison. I had the opportunity to meet the whole gang, including Madison, and I can tell you that meeting this family had a profound impact on my heart. Madison had been put on an “un-adoptable list” due to her medical complexities but God opened the right doors and Madison’s story is unforgettable.

Recently an adoption blog did a write-up on this amazing girl and I would love for you to read about her and see her transformation. I am guessing it will touch your heart as much as it did mine: http://blog.madisonadoption.org/2020/05/27/madisons-story/?fbclid=IwAR1o2satxYZCpMNClC3uWUVeSxGfRxu3MGVm7NHw-p7iR3exVdk0VRhX-5Q

In our family, the challenges we face were thrust upon us. We rely on our faith to carry us through and we often feel like our heads are barely above water. But to see a family pursue the challenges again and again and again…what a example of the love of Christ. What a life changing love these children might not have ever known had this couple not pursued the challenged and uncomfortable life.

May we all continue to see others through the eyes of Christ instead of assigning our own values.

And may God continue to call my family towards the challenged life so that we may develop the eyes and heart of Christ.

Much love,

Leah

 

Laughter

Let’s kick tonight’s entry off with a video of Levi’s newly acquired skill:

Our area has been spiking with new COVID cases so we have been staying tucked in with the boys for most of the week.

And for those of you tracking our bear visits, they have been coming in waves over the last two weeks- papas, mamas, and babies. They haven’t come within camera shot but we have been hearing them outside after dark and the neighbors have been catching a few pics. The next door neighbor sent me photos of this gigantic bear- hands down, the largest one we have seen yet. You can tell a bear’s age by the placement of the ears- the wider they are on the head the older the bear.

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The other age sign to look for is their hind legs. The further out they rest the older the bear. The closer they stay together the younger the bear. img_4925-1

This week has been filled with a lot of laughter. Actually, laughter remains a pretty big constant in our world. I have started to see it for the gift it truly is from God, as it has such healing in it.

Sometimes we laugh because things are funny. Like goofy Levi running around in his winter hat pushing the fart button or Malachi swinging joyfully in his swing.

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Sometimes we laugh when things get awkward and almost dangerous. Like when Levi uses the big soup pot as a stool and finds the giant knives we have hidden from him. Jesus take the wheel!

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Sometimes we laugh to distract from pain. The pain of others, like when Levi trips over the soccer ball and hits the ground hard. Or when we change out a tummy tube on one of the boys- laughing and rejoicing like they have done something super special.

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Sometimes we use laughter to ease a tense situation. Like Levi this week as he attempted his first solo ride on the horse at therapy. He was scared, yet we continued to laugh and cheer and pretty soon he too was laughing and riding with confidence.

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And sometimes we laugh to keep from crying. Usually these laughs happen when I am running low on sleep and energy and something happens that is completely out of my control. Those are the “take a deep breath” moments to talk those tears out of falling from my eyes and focus on the humor of the situation. Like when we tried to increase Levi’s overnight g-tube feeds. While Jake took a quick potty break in the morning, Levi vomited in our king sized bed, tracked it (while continuing to vomit) across the house where I was sleeping with Malachi, then streaked that vomit onto that queen size bed too. In doing so, he woke up Malachi after I had spent hours trying to get him to sleep.

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But in the end, the laughter is truly a gift from the Lord and one I have learned to never take for granted. When you spend time in and out of hospitals with your children there are long periods of time where laughter can’t reasonably exist in your world. When you finally come out of those dark days and have that first genuine smile and first real belly laugh you realize the power and healing of those two actions.

I can vividly remember a time several weeks after the birth of each boy when I naturally and genuinely smiled over something, and I remember those moments because my face was so physically sore after.

Facebook popped up some memories this week, and ironically enough one of them was a video of Malachi’s first laugh. As you know, Malachi had such a rough start in life. We made it home but the blows continued to hit. He developed a very rare and damaging form of epilepsy a few months after we got home and the medication required to control them robbed his personality and cognitive development from us for several months.

He was 16 months old when we first heard it…Jake was holding Malachi over his shoulder while singing and doing the dishes. I was in the living room and we heard a strange squeak come from him we hadn’t heard before. My first instinct was to grab my phone and call 9-1-1, worried that he had stopped breathing. I grabbed my phone and ran over to him to find a little smirk on his face. As Jake continue to sing we heard it again- another shrill squeak.

I will never forget what that noise, Malachi’s unique and genuine laughter, did to my mommy heart. It sparked a hope in me that I can’t explain. It reminded me that there was a silly boy trapped in that body that enjoyed hearing his daddy sing silly songs. And as the years have gone by, Malachi’s laughter has continued to grow along with his big, sweet personality.

His laughter heals my heart. It breathes life back into me on hard days.

Here is a video of one of his belly laughs from the week:

But in Genesis 18 we read a story about laughter that reminds me that sometimes we laugh to mask our grieving. It can even become a defense mechanism that morphs into a rejection of belief in the impossible.

For some context, Abraham was sitting outside his tent and suddenly the Lord appeared to him in the form of a man with two other men with him.

Then they said to him, “Where is Sarah your wife?” And he said, “There, in the tent.” He said, “I will surely return to you at this time next year; and behold, Sarah your wife will have a son.” And Sarah was listening at the tent door, which was behind him. Now Abraham and Sarah were old, advanced in age; Sarah was past childbearing. Sarah laughed to herself, saying, “After I have become old, shall I have pleasure, my lord being old also?” And the Lord said to Abraham, “Why did Sarah laugh, saying, ‘Shall I indeed bear a child, when I am so old?’ Is anything too difficult for the Lord? At the appointed time I will return to you, at this time next year, and Sarah will have a son.” Sarah denied it however, saying, “I did not laugh”; for she was afraid. And He said, “No, but you did laugh.”

Sarah heard the words that her heart had longed to hear for years and years- she would have a son! And as these words pricked the center of her heart, she rejected them with her laughter.

Have you ever had a Sarah moment like that? A dream that you cling to and treasure deep down in your heart. The years tick by and the dream stays unfulfilled. For me, that dream is Malachi’s complete and total healing. I KNOW God can heal him, but each day I wake up and see that the healing hasn’t happened I deal with that grief and disappointment all over again.

I am sure Sarah battled the same bitterness root that I catch growing in my own heart. So when her dreams were spoken aloud and promised to be fulfilled within a year it brought forth a scoffing laughter, revealing the depth of those bitter roots.

I love that God calls her out on her internal dialogue. His response is short and powerful:

Is anything too difficult for the Lord

But that statement also reminds me that when we allow ourselves to scoff at the impossible, or believe it too big a task, we are essentially declaring that God is not able.

NOTHING is too difficult for God….healing my severely disabled son, waking up the nerves in my two year old’s vocal cords, fulfilling the promise of a son to an old woman…nothing is too difficult for Him.

But the line after that sentence is noteworthy as well.

At the appointed time I will return to you…

Every dream we carry in our hearts, every miracle we pray for, every unanswered prayer has a God appointed time.

Our belief in the impossible is so incredibly important, but trusting the timing of God is also such an important factor of faith.

So tonight I am forgoing the laughter of disbelief and instead placing my faith in “the appointed time” when I know God will heal my boys. It may not happen on this side of heaven, but I have confidence that one day I will see Malachi run and I will hear him say “I love you”. And I will watch Levi run with ease, breathing effortlessly and jumping up and down on straight ankles! At the appointed time.

God bless,

Leah

 

I’ll Keep Choosing You

This week we were able to get a break from the mundane as Jake’s parents came down from Ohio for a visit. We spent the week playing cards, swimming in the pool, and having good conversation. It really was a refreshing change of pace, especially for Malachi and Levi!

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As I mentioned before, we have been trying hard to get Levi to recognize Malachi’s ability to communicate even though he doesn’t speak. This week something has clicked for Levi and he thoroughly enjoys asking Malachi questions and reporting to me what he says. I will say “Go ask Malachi if he likes the movie he is watching.” And Levi will run like he is on a mission. I can hear his little voice talking to Malachi and a few seconds later he will run back to me and give me the full report. He hasn’t grasped interpreting yet, so he will mimic Malachi’s “no” face to me or mimic Malachi’s arm movement for yes.

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Malachi loves it just as much as Levi and their bond is growing stronger through it. Levi has always been relatively inclusive with Malachi, but now he wants Malachi to do EVERYTHING he gets to do. He is constantly making sure Malachi never gets left out. Watching their love grow is so special.

Case in point, this Elmer Fudd hat has been all the rage this week with Levi. He wears it all the time for some odd reason.

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But you better believe he makes sure Malachi gets a turn, giggling as he smashes it onto Malachi’s head. Seeing them laugh together is something I will never tire of seeing.

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Malachi has had a great, seizure free week (aside from his typical 3-4 a day). He has been all about watching movies and has started to branch out from the same few he watches over and over again. I got him to begrudgingly watch Toy Story and he loved it. When I told him there were three more in the movie series he was giddy with excitement. We give Malachi a list of 3-4 movies to choose from and then move slowly through the list allowing him to indicate yes or no, and he is bypassing his favorites for new Toy Story movies.

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I know I am his momma, but I am so proud of Malachi. I think about how frustrating and sometimes painful his world must be yet he always gives his best. And he is always smiling. I don’t get too many photos of him these days because he requires both of my hands to support him in most activities. But when I see ones like the picture below it reminds me of how much effort he has to put forth for simple tasks. Seeing him exhausted from trying so hard makes me so proud of him.

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Levi is still a pistol, always keeping us on our toes! Today I had a friend watch him (more on that in a minute) and she said he at some of his snack but didn’t finish it all. Without asking him to he dumped the rest of the snack into the garbage and put his bowl in the sink. I was so proud until she told me the next part where he went and washed his hands in the toilet. Kids have a way of impressing you and humbling you in the blink of an eye haha.

Levi really likes routines, and one he has locked in on is praying before our meals. As soon as we sit at the table he reminds us to pray and won’t touch his food until the “amen”. I couldn’t help but snap a few pictures to share with you.

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Today Jake and I celebrated our 12th wedding anniversary! With our family being somewhat on lock-down we knew it would be difficult to think of something we could all go and do together like we usually do. After talking over some options we decided Jake and I would try and sneak away for a float down the river by our house.

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Doing this is would require us to find someone to watch the boys- something we have never really been comfortable with. We have had plenty of offers but with their medical needs training someone to watch them would take as much time as the outing itself. We also recognize that Malachi’s seizures continue if he is uncomfortable or needs to burp (something he needs help doing) so leaving always feels selfish.

We reached out to our of our very dear friends who also happens to be a nurse and she and her husband came over and sat with the boys for five long hours this afternoon! I can’t explain to your how freeing that time was for both Jake and I. We are on medical duty 24/7, so not having to think about those things was so unusual.

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We were able to have some really wonderful conversations and rehashed our wedding day, moment by moment. We also talked about our honeymoon in Montana and how one day we would love to go back to that same small town and hide from the world for a bit.

We talked about how our circles have changed as our family as evolved. Some relationships have grown apart and others have become seemingly indestructible. We both recognize that we are a hard family to be friends with. When it comes to friendship we often don’t have a lot to offer…most of our energy and emotions go towards caring for our children. We do our best but fall short in many relationships.

We talked about how thankful we are that God opened so many doors for us early on so that we could grow and explore the world as a couple. God brought us together at such a young age and we were able to develop our friendship with one another before the challenges hit.

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When we started decorating our new house I decided to saturate our walls in scripture. I was browsing online a few months ago and spotted a sign that caught my heart. It said:

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

When I first read the sign my mind immediately went to my sweet Malachi. Read it again with him in mind. When Malachi was born we had a very hard talk with doctors about whether to continue lifesaving care for him, and we declared life over our sweet boy. We chose to fight as long as he wanted to fight. And we have no regrets.

I ordered the sign and when it came it I let it sit out for a few days, trying to figure out where I wanted to put it. It isn’t scripture, but when I read it I see the heart of God. And I see the heart we should have for God. I see relentless, unwavering love in its words.

Zephaniah 3:17 says “The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.”

This Bible verse is such a beautiful reminder to me that the Lord rejoices over us! He sees our flaws, our sinful nature, our dirty hearts and motives and he chooses to love us anyway. The purity of that unconditional love is overwhelming.

Alright, so back to the sign…

I walked by it day after day, reading its words and dwelling on them. And while the sign does fit for our miracle Malachi, my eyes started to see it through a different lens and apply it to Jake.

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

Marriage is a challenge. It starts out relatively easy but then morphs into something that takes a lot of consideration and effort. Putting another adult’s needs before your own is not a natural instinct and is something that takes intentional action.

Our marriage has ebbed and flowed with the tragedies and victories we have faced. The more our focus gets distracted from each other and redirected towards our boys, the more I see the importance of the phrase “I’ll keep choosing you.”

Marriage isn’t a one time ceremony. It is a daily decision.

So that sign ended up above our master bed. Seeing it daily reminds me of the effort I need to be putting forth in the relationship. Seeing it also reminds me of the value I hold in the eyes of God.

The love of God is a beautiful thing, whether you are receiving it or giving it to others.

Please continue to pray for healing for my boys. Sometimes I forget to pray for their healings, as I am distracted by the minor aches, pains, and diagnoses.

God bless,

Leah