When Germs Attack

Let’s start with some brotherly love. We have been teaching Levi Eskimo kisses where you rub noses together. Levi has been doing it to Malachi which is so precious to see. And Malachi loves it!

As you can guess from the title, the Carroll crew has been under attack with sickness. Last Sunday night I posted the blog and within the hour Levi was burning hot with fever. As soon as 8am rolled around I started making all the necessary phone calls to cancel his appointments for the day. Then we watched and waited.

Thankfully he sailed through the sickness in about two days and this one did not affect his respiratory rate at all. He was extra cranky, but that has been the name of our game for the last few weeks…he is an opinionated little boy. Jake texted me one day this week and asked how my day was going and this picture was my reply:

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He likes to follow me around these days screaming until I pick him up. Or going after the trash can. We are officially into baby proof mode. I came home and Jake had rearranged the kitchen a bit haha.

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Levi is working so hard at so many things these days and I am proud of his progress! We have to go into lock down when sickness hits and with more time in the house we were able to tackle more one on one focused tasks.

Focus and proper foot placement is everything!

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Here is a video showing the progress we are making with spoon feeds:

Levi is still not safe to take liquids by mouth since his vocal cords don’t close to protect his airway. When we first started trying foods by mouth Levi would gag if something barely touched his lips. We have been working to desensitize him over the last few months with feeding therapy and he is improving by leaps and bounds. This video progress is huge!

Today he cried when we wouldn’t share our lunch with him so we strapped him into his high chair and let him have a snack too.

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As you can see, he was pretty pleased.

Malachi managed to avoid Levi’s sickness and our week morphed back into normal by Thursday. We made it down to the hospital in Chattanooga for Levi’s final synagis medication shot for the season. Houdini Levi has been wiggling so much lately and we are having to say “no no” to him frequently. As you can see, he isn’t a fan.

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Friday morning Jake called from work to tell me he thought he was coming down with something. By 2:00 that afternoon Malachi was running a fever of 102.5 and crashed fast. He has been having a hard time keeping food down and throwing up several times a day and multiple times a night. Even on fever reducers his temp is staying high. We are trying desperately to keep Levi from getting whatever Jake and Malachi have!

Here are some photos of sweet Malachi prior to the start of his sickness. I just love him so much!!

He has been asking for his feeds through his tummy tube almost every feeding time this week, making us think that he has a sore throat.

We also went to our favorite local restaurant on Thursday night for my free birthday meal (celebrated the big 3-3 this week) and Malachi got so tickled listening to the chickens jump up into the tree to go to sleep. I pulled out the camera to catch his joy:

Thankfully Jake is on spring break this week, so continuing to stay on lock down will be much easier. Levi has a sleep study tomorrow night, which I am dreading with a passion. We have already re-scheduled this study multiple times due to sickness and the next procedure on his airway is dependent on getting this study done so I am ready to get it over with.

We did something ambitious and booked a hotel for Thursday and Friday night this week to go on a little getaway as a family. I am hoping we will all be sickness free enough to actually get to go. Pigeon Forge is a two hour drive from here and we thought that Malachi might enjoy going to some of the silly dinner shows. One of the ones I booked asked if Malachi would like a cow bell to ring during the show, which is an emphatic YES! More cow bell!

Our appointments are all in limbo this week as wait and see if these germs will go away. The boys each have physical therapies, feeding therapies, GI appointments, horse therapy, and Levi’s overnight sleep study.

I read two quotes this week that really struck a nerve with me and I have been reading them over and over again and processing the words.

“Some people could be given an entire field of roses and only see the thorns. Others could be given a single weed and only see the wildflower in it. Perception is a key component to gratitude. And gratitude is a key component to joy.” -Amy Weatherly

I have been thinking about the last sentence in that one about gratitude being the key component to joy. And the importance of gratitude in our lives is overwhelming.

The moment we start to think that we “deserve” things or that we are entitled to things we start to lose the joy that the simple feeling of gratitude can produce. Life throws us unexpected outcomes and disappointments, but when we get to the point where we can no longer find things to be grateful for then we are in a dark place.

I think the same thing is true about our walk with God. We must always remember the power of the grace He freely gives. And having a heart of humility and gratitude are so incredibly important.

The second quote hit me on a more personal level.

“I sat with my anger long enough, until she told me her real name was grief.”

Anger is something that I have struggled with over the last six years. I can grow so frustrated over such tiny things…especially the ones that are out of my control. It is almost embarrassing to think about the tiny things that make me mad.

As I read this quote I found myself nodding in agreement, acknowledging that grief drives so many of my ridiculously angry moments. This just isn’t how life was meant to be when I pictured it. I grieve every day over the dreams I had for my kids. And I grieve every hour over their suffering, wishing I could take it all away.

This morning in children’s church I showed the kids a sealed envelope and told them that even before they were born God wrote out a special plan just for their lives. I explained how God doesn’t show us what is on that plan until the time is just right.

I told them that when God wrote my plan he had on there that I would have a special son named Malachi in a bright green wheelchair and a little baby named Levi. Nothing is a surprise to God.

I also explained that there is a whole lot more on that plan that God hasn’t let me see yet, but faith means that I trust that God’s plan is way better than anything I could ever imagine. I just have to be patient and trust that God will reveal more and more of that plan to me when the time is right.

The kids processed my words and then one of the 5 year old boys said “But what if I want to see my envelope? I want to see it now not wait until later.” And my heart totally related to his in that moment.

Don’t we all want to see what is in the sealed envelope. We all would love a glimpse of what God has in store for us in the future. But if we got to peek at the envelope it would completely deplete the need for us to trust in an omnipotent God whose ways are higher than our own.

So I am working on trying to re-direct that grief from anger to faith in the unseen plan God has for my family.

Please pray for us this week, especially Monday evening for the sleep study. The last one was a challenge for sweet Levi and I can’t imagine this round will be any different. And pray for my emotional health as I can already feel the gates getting ready to burst. Inflicting pain and discomfort on my children is so challenging to process.

Much love,

Leah

 

 

 

New Legs

In typical Carroll family fashion we managed to cram a whole lot into one week. Let’s start with some high points…

Malachi got to attend school 3 days in a row this week! We base his attendance on the health of his classmates and our crazy appointment calendar. He only goes for 2-3.5 hours but he really loves being there with his friends. They had a themed week so he got to wear his pjs on Pajama Day. He laughed and giggled as I got him ready in his moose pjs and slippers. He has such a sweet and pure spirit and such a sense of humor.

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Levi- oh Levi. Never have I met a child like him.

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Levi had a wellness check at the doctor this week and flirted shamelessly with himself in the mirror. I caught a little bit on video for you. Note the kisses he is blowing to himself:

 

 

I was mortified at one point when he leaned over and licked the mirror before I could stop him! I am thankful there is a separate sick and wellness side at our pediatrician office.

Let’s transition to a low point from the week that happened at our pediatrician appointment. The dreaded milestones checklist. We went through this with Malachi and for some reason it did not affect me as much as it does with Levi. With Malachi we knew there would be delays when he was born so prematurely. We expected to have to check “not yet” on those lists. With Levi we never saw the possibility of developmental delays coming so checking those boxes hurts just a bit more.

Levi is nearly 16 months old and is not crawling yet. He isn’t pulling to stand or attempting to walk. He isn’t doing a whole slew of things he “should” be doing at his age. The interesting thing is that those facts don’t really bother me…but having to give my son a failing grade on a checklist at the doctor really bugs me for some reason.

This week has been filled with those subtle reminders that Levi is significantly delayed. I ordered him a new bath chair that will contain his wiggly self a bit better and the box says to stop using when the child can pull up to stand around the 10 month range. Ouch.

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But he is continuing to progress towards those darn milestones that everyone likes to focus on. Just in his own sweet time.

 

He even started a new crawl this week. I am not quite sure if I can call it that, but I did snap a video to share with you. One of my favorite things about this video is his sheepish little peek around the corner at the beginning to see if I was watching him. He had been going after the hair dryer cord which he knew was off limits:

We transitioned him this weekend to a real crib to help prep him for his sleep study next week. Cord management while he sleeps is stressing me out big time, and this week I had two instances of waking up to find the cords wrapped around his neck. It makes me sick to my stomach just thinking about it. We have tried so many tricks I have lost count. Last night I tried a trick with some velcro zip ties and it seemed to help, but the crib will continue to stay right by momma at night. Probably until he is 21 or he gets married.

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Malachi’s seizures have kicked up a notch this week which has been a little disappointing. They still aren’t up to his former typical 8 a day but the ones he is having are a little stronger than before. We will be watching them closely and calling the doc to check his med levels if they continue to increase.

The boys have some big appointments over the next two weeks and we could use some prayers for smooth days and positive reports.

This week has been a mentally challenging one for me. Every few weeks the exhaustion of being a special needs momma gets exceptionally overwhelming and I am definitely there. I am embarrassed to tell you how many times this week I called in prescriptions or called providers and gave them the wrong kids name or birthday. “Ma’am, we don’t have a patient by that name.” Oops.

This life is mentally, emotionally, and physically draining. Even in the short hours that I get a chance to sleep I am required to be a special needs mom, using my knee to maintain Malachi’s posturing in the bed beside me so he won’t hurt or smother himself. I can’t move from that same position at night. And when I start to complain to myself I immediately feel guilty, reminding myself that Malachi can’t change positions at night either so why should I complain! Sacrificing my comfort for his is something I should feel honored to do.

I have been having lots and lots and lots of PTSD flare ups this week as my mind keeps flashing back to some horrible memories over the last 6 years. I close my eyes at night and see Levi’s face on the Cincinnati NICU video monitor, crying and gasping for air but no one is there to pick him up and comfort him. And I can’t go over there because I am stuck in a Ronald McDonald house with Malachi who isn’t allowed in the unit. Those helpless feelings still grip my heart, even though he is now laying right next to me.

Or hearing that phone ring at 2am in the Chattanooga Ronald house and the doctor telling me to come quick, that Malachi might not make it through the emergency surgery they were getting ready to perform.

Today I drove a stretch of road and flashed back to the drive home with Levi from the NICU for the first time, the muscles in my back melting for the first time in months as they relaxed realizing we were almost home and together again as a family.

This life is filled with ups and downs, but those down moments stick with me. They never leave. They don’t even become memories…they stay in real time in my mind, flashing back in and repeating themselves all over again.

I have two happy and living children yet my heart still grieves in such an inexplicable way.

This week I have been talking to Malachi a lot about Jesus. We lay in bed at night while Levi is asleep in the crib next to us and whisper about the ways that God is going to heal him. He listens intently to every word and smiles with excitement. I always make sure to tell him that we don’t know when God is going to heal him, but we believe that he will one day! I never want Malachi to feel that something is “wrong” with him so these conversations can be tricky.

I can’t wait to have a conversation with him one day about all these moments in his life when he couldn’t speak back to me. There is no manual for parenting, especially when parenting a special little boy like him.

Transparency moment here: I have a very hard time visually seeing Malachi’s deformities. I am not disgusted by him or anything like that…it just breaks my heart to see what cerebral palsy does to him, knowing there is nothing I can do to reverse the damage or stop the pain.

When Malachi is fully clothed I can imagine things where they should be, but when I go to change him or give him a shower the reality of his disfigurement can’t be hidden. His body is a road map of scars and devices, all of them needed to preserve his quality of life. Seeing them brings about waves of hopelessness. But these moments have challenged my faith recently in some big ways.

When I see Malachi’s tiny, atrophied legs the devil is quick to remind me that there is no way that a child like him could ever support weight on them- even if his brain is healed and he can suddenly walk. But this week as I fought through those hopeless feelings God brought the story of the lame man from Acts 3 to mind.

Peter and John were headed to the temple to pray and they came across a man who had been lame since birth. I always find it interesting when the Bible includes these extra little nuggets like “since birth”. This man was likely very much like my sweet Malachi, his ankles as thin as the bones inside of them.

In verse 7 we read “Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God.”

Did you catch that extra nugget in verse 7? It doesn’t just say that he jumped to his feet, but it makes a point to mention that his feet and ankles became strong.

It points out the physically impossible so we won’t glaze over it. Prior to having Malachi I never understood the significance of this miracle. God changed the anatomy of that man.

So why do I keep doubting that God will do the same thing in my sweet Malachi?

A few verses later Peter is using the miracle to tell the crowd about Christ. He says:

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

The key is faith. It is continuing to believe in the impossible, in the unseen. It is continuing to be confident that God is able and willing to heal my Malachi, but already has the perfect moment planned out for that healing, whether it be on this earth or in heaven.

Faith takes a level of endurance that I could not achieve without God’s strength. “My grace is sufficient for you, for my power is made perfect in weakness.”

So instead of looking at Malachi’s weak deformed hips, dislocated knees, tiny ankles, and outwardly turning feet and seeing hopelessness I will choose to see hope. I will choose to hear “not yet” and have faith that Malachi’s day of healing is closer than it was yesterday.

Today I choose hope. And Malachi and I will stay up late tonight whispering about all the things he is going to do when God gives him his new legs. He’ll surely be walking and leaping and praising God.

Leah

 

Puppies & Pools

Here in southeast Tennessee we have been pounded with an incredible amount of rain. Downpours and the wheelchair life don’t mix well; on the plus side Jake’s school was closed 3.5 days and having him home to help was a blessing.

Levi is turning into quite the mischievous child and while he isn’t crawling yet he is successfully rolling anywhere he wants to go. The result is a mess of wires that we are continually untangling but we are so thankful for his mobility!

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He is also mastering the art of dumping out every bin he can get his hands on, and with such pride I might add.

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Malachi and Levi have been playing a lot together and are oddly good at sharing. My favorite is when Levi takes Malachi’s hand and helps him activate the toys. Levi is calling “Chi Chi” by name a lot lately.

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Jake and I have been working hard this week to get into a groove with Malachi’s feeding tube. Malachi is so intelligent so we try to give him a say with things that are in his control. We have been asking him if he would like his bottle in his mouth or in his tummy tube. 9 times out of 10 he will sign that he wants it in his mouth, but every now and then he votes tube! That is a big step. We ordered some special tube dressings that have superheroes on them so each morning he gets to decide which superhero to wear. That has also helped change his attitude towards the tube a bit.

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Right now we are doing two tube feeds a day and two by mouth. We are trying to pack on some pounds so the tube feeds are a high calorie formula instead of his almond milk smoothies.

Malachi has been rocking his therapy sessions lately, especially his horse therapy. He has been using both his words and his signs to get the horse to go and very interactive. We are seeing an increase in seizures this week but he is still more cognitively clear on the CBD medication.

Look at this sweet photo of Malachi from 4 years ago. I just love his precious heart.

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The boys had a fun surprise play date on Friday with a litter of puppies!

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We have been blessed with the opportunity to get to know a wonderful local family through a soccer league we run at the church. They invited our family over for dinner and puppy play time and the boys were thrilled!

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We knew Malachi would be full of giggles but we weren’t quite sure how Levi would react. He surprised us with his curiosity and boldness.

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Our friends are originally from Columbia and prepared a delicious dinner for our family, full of unique foods that were new to us. It was such a wonderful night with good, godly company.

I know I left you all on a cliffhanger last week with our unexpected blessing moment. The more I process the blessing the more it is blowing me away so here we go…

Repeatedly through this journey we have watched God meet needs we didn’t even know we would have. Then a few weeks or months later we see the reason why and recognize the ways that God protected us from discomfort for our family. God truly meets all of our needs.

We have also watched God go above and beyond what we could ever imagine. As I mentioned last week, around Christmastime we were at a restaurant and were approached by a local couple. They said that God laid it on their hearts to help our family and that they owned a construction business. He said to stop by his office to discuss what needs we have and last week we were able to meet up with them! I am purposefully not going to give any identifying information about these beautiful souls in order to respect their anonymity.

As I said before, God has overwhelmed us in the many ways He meets our needs. We get a lot of questions from close friends and family about our financial needs, so I am assuming many of you also have those questions. Having medically complex children can get extremely expensive, especially with the 22 surgeries we had last year between the boys, not to mention Levi’s 131 day ICU stay! Each week the boys have 5 therapy sessions, averaging about $150 each. Then add on any specialist appointments, testing, or hospital stays. You wouldn’t believe the amount of medical bills these boys accrue. It literally takes my breath away.

Needless to say, we are very thankful for Jake’s private insurance through his job! The boys each have a diagnosis (called a “presumptive disability”…based on their HIE brain damage diagnosis the state assumes they will be disabled for life) that automatically qualifies them for secondary state insurance. So each of their medical bills cycles through a primary and a secondary insurance before it makes its way to our mailbox.

Just like most of you, we have deductibles and out of pocket maximums to meet, but with this motley crew we typically hit those within two weeks of the new year. My record is January 2nd haha. So we take a hit at the beginning of the year, then coast relatively calmly through the remaining 11 months.

There are lots of pop-up costs that come up…things that insurance won’t cover. For example, they see a bath chair for Malachi as a “comfort item” and say it is not medically necessary. They cost around $4,000 each. A ceiling track system for the future runs about $25,000 and is not typically covered. His wheelchair stroller new costs $6,000 (we thankfully found a used one)! I apply for lots and lots of grants to help with these extra items and costs.

After our initial encounter with this generous couple, Jake and I prayed and thought long and hard about any needs we have. With us already being into late February we are in a stable, predictable place as far as bills go, making the hopeful prediction that there will be no major medical surprises on the horizon.

One of the things that Jake and I have had on our hearts since this summer is a therapy pool for Malachi. His physical therapist has one and allowed him to do swimming therapy in it this summer. Malachi has always loved the pool but seeing his tightness go away after 30 minutes in the warm water was amazing to see. The heated water is so therapeutic for his body, not to mention the brief independence it gives him. These pools are about 4 feet deep giving his body enough room to vertically float.

Just watch this sweet video of Malachi during a swimming therapy session this past summer.

So fast forward to last week’s meeting. Jake and I have saved enough money to buy Malachi’s therapy pool, but have been trying to figure out a way to make it accessible for him. It is going to require some poured concrete to extend it off the porch. Since this couple runs a construction company we instantly thought WOW- that God was up to His mysterious ways again!! You also need to know that Jake and I are very VERY hesitant to ask people for help. We would never want to inconvenience or take advantage of anyone’s generosity.

We explained the situation and asked if they would be able to help coordinate making an accessible spot for the pool to go.

Strap on your seat belts and listen to what happened next….

We went through pictures of the house and different places it could go and remain accessible. The man stated “I know exactly where to put it.” He then explained that he would like to knock out a wall in Malachi’s bathroom and build on an addition to our home to put in an indoor pool for Malachi. He wants it to be hooked to the central air and heat so it can be used year round and is making plans to make it 100% accessible for him.

I get chills and teary eyed just typing that. The Holy Spirit prompted this complete stranger to help our family in a way that is above and beyond anything we ever imagined! I felt the Holy Spirit in the room as the plan unrolled off this man’s lips.

Our faith is not based on these unexpected blessings, but oh how these hugs from God serve as beautiful reminders that He holds our family in the palm of His hands. Thank you Lord for continually meeting our needs and bringing such big blessings into our path, even when we don’t deserve them.

1 Corinthians 2:9 says “What no eye has seen, no ear has hear, and no human heart has conceived- God has prepared these things for those who love Him.”

While this scripture is likely hinting towards our future in Heaven, it has served once again as a reminder to me this week to not try to put walls around what I think God can do. He is omnipotent (all powerful) and omniscient (all knowing) and His wisdom is beyond anything we can imagine.

I am so thankful that God is going before me in this challenging walk. He prepares the ground we are about to walk on, and for that I am so grateful.

I have some other devotional thoughts but I am out of steam! I will save them for next week’s entry.

My prayer for you all this week is that you clearly see the hand of God in your life. I pray that He moves in his mysterious ways in your life too, and that your faith grows as you watch Him work.

Much love,

Leah

Immeasurably More

I wish I could wear a camera all day and share the many sweet brother moments we have each day. While Levi can be a wild man towards Malachi, he is often very sweet and loves to be close to him at all times. We got this bath chair with some grant money last year so the boys could share the tub. Levi isn’t quite ready for a big boy bath yet so we set the chair up in the living room. They both love being so close and accessible to one another.

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Levi is starting to say Malachi’s name (he calls him Chi Chi) and hearing it is so beautiful. I happened to catch it on film for Jake and thought you would like to hear it too!

Our crew had a typical week, racing from one appointment to the next and praying for God to get us through the next 24 hours. That may sound dramatic, but that is our reality! Our life and energy level defies logic so we lean heavily on strength from God.

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This handsome six year old lost another tooth this week! This one didn’t get swallowed so he got to put it under his pillow and get some more chocolate.

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The beginning of the year is always a dicey time for special needs mom as we start over with deductibles and out of pocket maximums. Navigating the bills is quite a job and requires a lot of phone calls and double/triple checking…did they file through primary AND secondary? Should I appeal something they are saying isn’t covered? Last year we broke our record and hit our deductible by January 1st!

So much of insurance is playing the game and learning the ropes. For example, I have to order g-tube and oxygen supplies for the kids every month. Some things, like a specific tape, I don’t necessarily need every month. But if I don’t order it for 3 months they remove it from the list of available items and to get it again requires a doctor prescription (which equals about 3 phone calls for me). So I have a list of things I add to the regular items to make sure they stay current on our list.

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Malachi’s wheelchair is also up for replacement. The average “life” of a wheelchair is 3-5 years and we got his just over three years ago. We met with the Durable Medical Equipment provider (DME) this week to talk about options. They looked at his current chair and said that it was still the most appropriate chair style for Malachi. The frame looks solid enough and there is still enough room for growth so it doesn’t need to be fully replaced. We talked about my concerns with his positioning, especially his head and hips so we have a few minor modifications we are going to try to make to it.

It is in these meetings that I get unintentional snapshots of the future for Malachi. The DME was explaining the importance of good posturing and what we can expect later in life if we continue to choose Malachi’s comfort now over his body in the future. As we have explained to you many times, we always strive to give Malachi a full, happy, and comfortable life. Unfortunately that goal may be setting him up for more pain in the future as his body does what it wants to do right now. We could be more aggressive about posturing him, but I am just so worried we will be causing pain for him in the present, AS WELL as the future. The decisions we have to make can be overwhelming.

 

 

We have been trying to utilize Malachi’s g-tube more. For those of you that are not familiar with feeding tubes I will try to explain this a bit. Malachi and Levi both have the same type of g-tube, called a Mic-Key button, but we use them very differently. Here is a visual of the button.

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Levi is on what we call “continuous feeds”. He is hooked to a bag and a pump that feeds him in small amounts for 18 hours a day. We carry a small feeding backpack around at all times and inside of it is a bag of formula, ice packs, and a feeding pump that is programmed for a certain rate. We leave the extension (the tube that plugs into the button in his stomach) on at all times because it is used so frequently. We tape it onto his belly because he pulls at the tubing all the time. You will see this white tube coming out of the bottom of his onesie in nearly all the pictures I post. One of my biggest fears is him ripping the whole mechanism out of his belly so the tape gives me a little peace of mind as I can hear it rip off his skin when he is in wild man mode and get to him before he does more damage. If the tube gets pulled out undetected (like during their sleep) for more than 4 hours, they have to surgically put it back in.

Malachi has not tolerated pump feeds well but is adjusting to “bolus feeds”. This means that once or twice a day, particularly when we are on the road for appointments, I pull over and feed him through the tube which takes about 5-8 minutes for 6 ounces. I hook an extension tube into the button and put a giant syringe on the end. I fill that syringe up with formula and hold it up so gravity can take it into his tummy. Once the feed is done we unhook the extension leaving just a penny sized button on his tummy. I took this picture of a bolus feed in a Taco Bell parking lot this week to give you a visual haha.

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We were hoping having a g-tube would help with seizure management for Malachi, as the majority of his are triggered by intestinal discomfort, but unfortunately it has not made a difference. He still has the same amount of burps whether we feed him like normal or through his tube.

Changing gears here…

I have been absolutely BLOWN AWAY by God this week. There is a verse in the Bible (Ephesians 3:20) that says “Now to Him who is able to do immeasurably more than all we ask or imagine, to Him be the glory…”

A few months ago Jake and I had an encounter with a stranger at a restaurant. He walked over and said that God laid it on his heart to help our family. He gave us his contact information and told us to track him down over the next few weeks and walked away.

Jake and I weren’t quite sure what the man meant, but over the last few months I have been trying to set up a meeting with this very busy man. On Tuesday afternoon I finally got the chance to sit down with him and talk. I don’t want to go into details yet until things are actually progressing, but I want to tell you that I watched as God brought that Ephesians 3:20 verse to life right before my eyes. He used this very generous man to show me that sometimes God’s plans are sometimes so much bigger than anything we could ever ask or imagine! To God be the glory.

Time and time again we have watched God meet our needs before we even knew what they were. There is not a doubt in my mind that God is holding my family in the palm of His hand…and the undeserved blessings that He continues to send our way leave us speechless. I was literally speechless as I left this man’s office on Tuesday; and the presence of God was so undeniably evident in this situation. It brought Jake and I to tears.

It is through these unforeseen blessings that I hear God say “Leah, I see you. Your struggles, trials, and tears are never hidden from my view. And through it all remember that I chose you for this life, and I will equip you for the task. Just have faith that my ways are beautifully mysterious and trust that I will continue to care for you in this calling.”

I can’t wait to share more about this unexpected blessing with you all over the next few weeks. I know I just presented you with a movie trailer and left you hanging, but I promise more info to come when the timing is right! It will BLOW YOUR MIND and is such a testimony.

Please pray a hedge of protection around the boys as I am starting to develop signs of a cold. If the discomfort I am experiencing from it hits either of the boys then we are in for a long and miserable week. Help us pray the germs away!

Much love,

Leah

 

 

 

Delayed Miracles

On Monday we celebrated Malachi! He was giggling the second he woke up and clearly knew that is was his special day. I dug out his birthday shirt from last year and his favorite monster pants and he was ready to go!

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We had a jam packed Monday but I wanted to make sure we made it special for Malachi. After his physical therapy session we headed to the grocery store and I let Malachi pick out a giant balloon. Of course he chose Paw Patrol and giggled with anticipation as they inflated it for him. Levi is going through a phase where balloons scare him, which Malachi is very aware of and uses it to make him shriek and cry. We then went over to the bakery section and let him choose some cupcakes for us to share that night when Jake got home.

We put candles on his cupcake for the first time and turned the lights down so he could see them.

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And then he flipped the entire cupcake over with his excitement.

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We had one big cupcake left over and I decided to save it for feeding therapy the next day as I knew it would motivate Malachi! The boy’s feeding therapist is very animated and knows how to motivate Malachi; he always tells Malachi to use his “dinosaur teeth” to chew food. We were working at him eating him cupcake and Malachi crunched so hard onto the plastic spoon that it cracked. He froze and I watched a look of fascination come over him that he made such a loud noise with his bite. And naturally, he decided to bite down even harder, shattering the plastic spoon into pieces. I swiped his mouth with my finger as fast as possible but didn’t get it all before he took a big gulp, swallowing a big plastic chunk. Oops!!

So far he is okay but I have been watching him like a hawk. Levi did some major damage on the rest of that cupcake!

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On Tuesday and Wednesday Malachi went to school for a few hours. His class has been somewhat healthy lately so we decided to let him go!

Wednesday Malachi got to ride his horse and had the best session he has ever had. Even when it was over he was a bundle of energy. I love seeing him so happy.

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Our adventurous week continued on Thursday when Malachi and Levi got to take a “Thank You” cookie cake to the robotics and mechatronics class that adapted Malachi’s Wild Raptor for him. While we were there the boys got to see some of the robots the class is working on. We also left the Wild Raptor there so the crew can work on the step by step tutorial they are making so that other special needs families can have the info.

 

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Friday we made a trip down to the hospital for Levi’s synagis medication shot. These shots are extremely painful as the medication burns going in. It is always a miserable experience but we are grateful insurance deemed him worthy enough to get them this season. The shots are nearly $9,000 per season! He will get his final one in March, and we will be pushing for him to get approved next year as well.

We have thankfully stayed pretty healthy this season but on Thursday Jake came home with a cold. Friday night Levi started vomiting once an hour. For a typical kid you would assume it was a stomach bug, but with Levi even the slightest drainage dripping near his airway triggers his gag reflex. So we watched and waited to see what it was going to turn to. Around 1:30 in the morning he spiked a fever of 102.6 and I started to get worried. I cranked up his oxygen and gave him some fever reducers and he fell asleep laying on the living room tile floor. We were up and down most of the night with him vomiting pretty consistently but by Saturday morning the fever was gone and the vomiting slowed down.

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It never really turned into anything else and Malachi and I avoided contracting anything!  But it was a pretty sleepless weekend in our house between sick Jake and sick Levi.

My niece and nephew had a birthday party on Saturday that Malachi had really been looking forward to so he and I left the sickies at home and headed to the party. We talked on the way there about how there would be a bouncy house, cake, and lots of kids his age and Malachi was grinning with excitement. The party was inside a gym and when we got there I could tell that all of the noises (especially the loud blower on the bouncy house) were difficult for him to process. I tried to distract him by talking about the dinosaur cake but after 30 minutes he started to uncontrollably cry, something he does when he gets overwhelmed. I asked him if he wanted to leave and he didn’t answer me- which told me he really didn’t want to leave.

He put on a brave face but it only lasted 5 more minutes and he started sobbing again. When I asked him again if he wanted to leave he signed a sad little “yes”. It broke my heart to see him struggle…he clearly wanted to stay but his brain just couldn’t handle it. We didn’t stay long enough for cake so after I loaded him into the car I took him to the cupcake shop down the road and let him pick one out.

Oh sweet little Malachi. I made it through the whole birthday without shedding a tear, but this picture popped up in my Facebook Timehop a few days later and it did me in.

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Flashing back to those fragile days just overwhelmed my heart. Malachi and I still hold hands every night as he goes to sleep.

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What a journey it has been.

Sometimes I spiritually get into valleys and I forget to continue to pray for the big miracles. I look at Malachi and I want to see a healed child..but then I realize the monumental nature of my request. So I transition from praying for BIG miracles to praying for small baby step ones. Like praying that Malachi will be able to speak coherently. Or that his seizures will stop completely. Or that he will be able to hold his head up for long periods of time.

But then I always feel conviction over than mindset, almost as if my lack of verbalizing the big miracles is questioning God’s power and abilities. This week I am back on that mountaintop and praying for the big healings for both of my boys.

A story from the Bible keeps coming to mind. In Daniel 10 he describes a vision that he had of an angel.

10 A hand touched me and set me trembling on my hands and knees.11 He said, “Daniel, you who are highly esteemed, consider carefully the words I am about to speak to you, and stand up, for I have now been sent to you.” And when he said this to me, I stood up trembling.

12 Then he continued, “Do not be afraid, Daniel. Since the first day that you set your mind to gain understanding and to humble yourself before your God, your words were heard, and I have come in response to them.13 But the prince of the Persian kingdom resisted me twenty-one days. Then Michael, one of the chief princes, came to help me, because I was detained there with the king of Persia.

Like me, Daniel had petitioned God for a huge request and as this angel said, he had been sent by God the same day as that prayer. But due to some spiritual warfare the angel was delayed from making it to Daniel.

This week I have found myself pondering if maybe there is some major spiritual warfare going on right now that is delaying the answers to my prayers. But I am finding comfort in knowing that God’s will always wins. While the devil may delay, God always wins.

So I will continue praying for the big miracles. The unfathomable. The unlikely. Because my God can do “immeasurably more than all we ask or imagine” (Ephesians 3:20).

And a random side note- I stumbled upon a support group for Levi’s diagnosis! This is HUGE! Some statistics quote that in the United States, bilateral vocal cord paralysis happens in 1 out of every 1 million births. Connecting with other moms who can answer questions for me has been a blessing.

Based on what I have learned so far, I am absolutely positive we made the right decision for Levi in trying to avoid the trach. I have also learned that we are blessed that Levi has a voice…not many kids with BVCP are able to speak above a whisper.

Please join me in praying for big miracles this week. That Levi’s vocal cords wake up and start functioning as they should. That Malachi would walk on this earth and proclaim the glory of God in his own words. You know…the BIG stuff!!

Love,

Leah

 

Malachi is 6!

This week we were pleasantly surprised by two bonus snow days with dad! Snow days are always nice from a medical standpoint as they give me a guilt-free cancellation for therapies. The monotony of our weeks can get old so justified reasons to skip are always welcomed!

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We live in a very mountainous area of Tennessee and since heavy snow is rare, the roads are not treated like they are in the north. It is always highly recommended by news stations that if you don’t need to be out then stay home! We loved the suggestion and spent the day tucked in the house as a family. Jake and I even tackled another escape room and finished in an hour and a half! Progress haha.

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A friend took this photo from on top of one of the local mountains and I thought it was beautiful enough to be blog worthy.

Our miracle Malachi turns 6 years old tomorrow (Monday)! He is very aware of birthdays and is really looking forward to the day. We have a jam packed Monday so we decided to celebrate on Saturday. We took the boys to see the new Mary Poppins movie and thankfully we had the theater all to ourselves. It was Levi’s first movie and he did about as well as can be expected for a one year old. Malachi on the hand loved the experience. We sat in the handicap seats which are close to the screen and he tried very hard to watch most of the movie. Since he can’t see well I try to narrate things to him and he was very into any of the action scenes.

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He received some birthday money from some family members so we asked him if he would like to go pick out a birthday present. His eyes lit up and he eagerly signed YES so off to the store we went. We walked through all of the toys, books, and movies asking Malachi about different things we thought might interest him. He genuinely loved the experience and was so focused on picking out toys.

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We narrowed it down to a little kid dinosaur educational toy and a big boy scary dinosaur that roars when it is motion activated. He thought long and hard and finally signed NO for the educational dino and a big YES for the big boy one. He also picked out two new Paw Patrol movies. I think the excitement of shopping for the toys was even greater than the gifts themselves.

Sometimes I forget how aware and intelligent Malachi is, and moments like our shopping trip remind me of how typical Malachi is. He has some strong opinions, a big imagination, and such a sweet heart.

And I was reminded this week of his ability to be a master manipulator. The boys go to work each week with me (Mondays, Wednesdays, Fridays) and Levi insists on sitting in the big chair with Malachi. They were playing so sweetly I got out my camera to take a few pics and caught this hilarious sequence of events.

Picture 1- Levi was playing gently and everyone was happy.

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Picture 2- Levi pulled Malachi’s hair before I could stop him, and it made Malachi start to cry. Levi recognized that he hurt Malachi’s feelings and hugged him.

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Picture 3- Malachi realized that Levi would hug him when he cried and loved his new power over Levi.

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Picture 4- Levi checked to see if Malachi was still crying and Malachi tried to pretend like he was still a little sad (but was definitely fine).

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We have been tackling some big changes with Levi this week. Since Levi came home from the NICU he has slept next to me in his Rock N’ Play. It has a self rocking feature and plays music, but the best feature is that it is inclined (for his reflux). It has always brought me peace of mind as it keeps him tucked in a safe, cord managed position.

But when he sleeps flat he is much quieter with his breathing. He has a sleep study next month and we want to set him up for as much success as possible so we broke out the pack and play. It has proven to be quite the challenge, most nights this week ending in stand offs with him sitting up and staring at me while saying  “momma” over and over again. But each night takes less time than the last so we are making progress.

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The cord management stresses me out so I don’t feel comfortable falling asleep until he is completely asleep. I have been running it through his onesies to keep it from getting wrapped around his neck but he sleeps with three wires attached to him and lots of possibilities for danger.

He has been working on a new smile. And getting into EVERYTHING he can get his hands on or in.

The trauma of Malachi’s birth is still a struggle for me, but this birthday is proving to be exceptionally more difficult for me than normal. It was shortly after kickoff on Superbowl Sunday when I headed to the hospital with Jake, not realizing that my son would be born that night. Scenes from that night play over and over again on my head on repeat, especially with today being eerily similar to that Superbowl Sunday.

This photo was taken the night before Malachi was born. I was 24 weeks along.

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I know that many of you have been with me from the beginning and could likely tell the story of that night as best as I can, but the therapy of writing these blogs helps me through tough nights like this one, so just bear with me.

There was so much confusion. So many tests. So many questions. Malachi’s heart rate was being monitored and he was still doing just fine.

Then in an instant everything changed. My doctor walked around to the right side of my bed and reached out to hold my hand. I remember all of the false confidence I was storing up poured right out of me as I watched his eyes while he spoke. He explained that he thought I had a placental abruption and that I needed to be transferred to a hospital with a higher level NICU. He explained that Malachi was going to have to be born that night…words I never saw coming. I said “But he is too little…will he live?” And the doctor squeezed my hand a little tighter and said “If he survives the delivery there is a 50% chance he will survive. But we need to get you to the hospital downtown immediately.”

I was loaded onto an ambulance, Jake followed behind in the car, and a team was ready for me when we arrived. So many medical professionals were gathered in the room and started trying to figure out why I wasn’t showing the clinical signs of an abruption (bleeding).

And that is when it happened….Malachi’s heart suddenly stopped beating. The doctor attempted to move the bands around to find the heartbeat but after several failed attempts she said “Try it one more time.” I could sense the tension in the room rise and got a sick feeling in my stomach. After a few more seconds she said in a loud commanding voice “GO GO GO” and in an instant all the cords were pulled from the wall behind me and we raced out the door.

The clock above the door showed it was almost midnight. Malachi was born just 4 minutes later via emergency c-section. I will never forget the look on Jake’s face as we locked eyes one last time as I left the room.

We raced down the hall at a full sprint and I watched the ceiling tiles fly above me. The words from Job played in my mind and I prayed “The Lord giveth, the Lord taketh away, blessed be the name of the Lord.” Over and over again I prayed these words.

We made it into an operating room. Everyone was so busy prepping that they asked me to slide myself onto the operating room table and stretch out my arms. The doctor visibly chose where to make her incision and picked up the scalpel. She said “Ready to cut!” and started to bring it down towards my stomach. I spoke up and said “I will do my best to stay still but I can’t promise I won’t move…” and she screamed “Somebody knock her out!!”.

A nurse ran over with an oxygen mask and her final words before I blacked out were “You need to breathe this in as fast as you can…your baby’s not breathing.”

I woke up in a small room with a nurse by my side. She went and got Jake and I remember trying to make eye contact with him as he walked into the room, desperate to find out the outcome of Malachi’s birth without having to speak of it. Jake was fighting back emotion and stared at the floor tiles as he walked over, and my heart sank. I asked “Is he alive?” and Jake nodded yes. But his body language told me I shouldn’t ask any more questions, as my heart might not be ready to handle the answers to them.

Malachi’s birth was a result of a placental abruption that had been internally bleeding for several days, unbeknownst to me. We had even been to the doctor for a regular baby checkup the Thursday before and everything looked great. The doctor always boasted “You are the healthiest pregnant woman in my practice.” An honor I always wore proudly. I drank all the water, ate all the vegetables, and followed all the rules.

The massive blood clot that was discovered during that emergency c-section almost took my life as I lost a significant amount of blood. I was in the hospital for several days receiving blood transfusions and trying to heal from a very quick and aggressive vertical c-section. Malachi was born without a heartbeat and required 15 minutes of CPR on his 1 pound 12 ounce body. He was taken to the NICU, wheeled past Jake for a brief few seconds. I didn’t get to lay eyes on my firstborn for three long days. The pain of those days is something that I will never ever forget.

Early the next morning I asked one of my nurses how Malachi was doing, desperate to hear a good report. She replied “It doesn’t look good.” and left the room. I processed the thought that I may never get to meet my own child on this earth. And it broke my heart. Every time the door opened I braced, assuming they were coming to tell me that my son had died.

The ups and downs from his 4 month NICU stay were overwhelming and strengthened my faith in so many powerful ways. We learned during those hard times full of bad news to rely on God’s strength to carry us. I realized that the control I thought I had over my life was simply an illusion and that I needed to rest in the will of God.

Every day since that night has been a challenge, a test of my faith. Through Malachi I have learned what hope truly looks like. We have known disappointment, we have known true fear, we have known what it is like to pray that your son lives to see just one more day. We have believed in miracles, mourned over not getting them, and then chosen to believe in them yet again.

We have learned that God’s grace is amazing. And how generously He wants to give it to us. We have learned how important a RELATIONSHIP with God is. Not just knowing who He is or what He can do. We have learned to experience God.

I share this poem every year on Malachi’s birthday; it is something I wrote for him a few years ago and it helps me refocus as I fight through all of the hard memories that keep themselves stored in my head and heart from that night.

It was a breathtaking day in heaven as the father summoned the Son.
He wanted to tell him firsthand about something wonderful he had done. 
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth. 
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways. 
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord. 
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind. 
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace. 
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

 

It is just after midnight and the birthday boy and I are watching Bubble Guppies while he tries to fall asleep. He likes to listen to the keyboard while I blog on Sunday nights. I just leaned over and whispered “Happy Birthday” in his little 6 year old ear and the joy on his face brought tears to my eyes. What a blessing this boy is in our lives.

On this birthday we will choose to find all of the joy and continue to fight against my nature to focus on memories. I will let my heart mourn in private when it needs to mourn, but I want Malachi to experience joy today….the same joy that heaven experienced on that special night he was born. I am confident he spent some time in the throne room of God that night, being comforted by the angels as earthly hands brought him back to this earth.

Our life is a uniquely beautiful one. Thank you for giving me the chance to share it with each of you.

Much love,

Leah

If I Knew Then…

There are weeks that I feel overwhelmingly blessed by God…this week has been one of those weeks!

 

Aside from some temperature regulation issues with Malachi both of the boys have been healthy and happy. Jake had the day off on Monday so we did what we typically do on slower days- take the boys into town. I know that sounds very “Little House on the Prairie” but it is a thirty minute drive to the nearest big town so to us it is a big adventure. Jake and I received several gift cards over the holidays so it doesn’t take much prodding for us to head into town for a nice meal together! The boys both absolutely love any adventure outside of the house and I don’t have to cook so it is a win-win for everyone. I am also able to run quick errands into stores without having to unpack the wheelchairs, strollers, and children.

Tuesday was a rookie “tubie mom” catastrophe day. It was a long day of appointments so I packed enough gear and food to get the boys through 7pm that night. We made the one hour drive to Malachi’s orthotics guy to pick up his new AFOs and on the drive I noticed a faint smell of formula. Levi had spit up in his car seat a few days before so I assumed it was a leftover stench and tried to ignore it. But then I saw it…his feed bag had tipped over in the front seat and spilled 12 hours worth of formula into the cloth seat. Aside from the obvious mess there was also the issue that he now didn’t have any food for our jam packed appointment day.

We made the hour drive all the way back home to refill his feed bag, clean the front seat, and repack the bag of spare clothes that came into contact with the mess. Then we had just enough time to race 45 minutes away for the next set of appointments. I am waiting for a hot day to tell me whether or not I got all the formula out of the seat…cross your fingers for me.

Here is a photo of Malachi’s new orthotics. Not a huge fan of the white but he definitely wanted the Superman ones so we are going to make it work.

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Our boy was a rockstar this week on his horse! We are still making our list of pros and cons on the Epidiolex and use therapist input to help us see the changes. His PT is worried about his decrease in head control but his hippotherapist was thrilled with how vocal and interactive he was on the horse this week. This sweet photo popped up in my Facebook this week (it is from 3 years ago):

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Jake celebrated a birthday this week- it is hard in our world to take the time to celebrate us. The boys and I ordered him a giant cookie cake and bought him an escape room game for us to play at the house. The goal is to solve the codes in 60 minutes….it took us 150 minutes to solve the “easy” one but we enjoyed the challenge haha.

Levi is starting to grow a pretty legit head of hair!

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He is getting stronger day by day. He is still not crawling but he is so close! We head back to the eye doctor this week to talk about surgery.

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Malachi celebrates his 6th birthday next week so we are brainstorming ways to celebrate. Last year we were in the Ronald House in Cincinnati and we didn’t get the chance to celebrate him like we wanted. It doesn’t take much to bring a smile to his face but we want to do something special. I wish you could have seen Malachi’s face this week when he got a balloon from the grocery store- uncontrollable giggling! And for the record, Levi is going through a “scared of balloons” phase haha.

I have been hit this week with waves of nausea as I have read news headlines about New York’s Reproductive Health Act.

Section 2 of the bill creates a new Article 25-A of the Public Health
Law (PHL), which states that an abortion May be performed by a
licensed, certified, or authorized practitioner within 24 weeks from
the commencement of pregnancy, or there is an absence of fetal
viability, or at any time when necessary to protect a patient's life
or health.

Much of this bill is not new information. The concept of abortion absolutely goes against my beliefs and has always made me sick to my stomach, but seeing it be celebrated has brought a whole new level of sadness. As you already know, Malachi was born unexpectedly at 24 weeks gestation…a point in the pregnancy that he could have been legally aborted.

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During the emergency c-section I lost 1.5 liters of blood and almost lost my own life. It was a traumatic birth and a day that will forever be burned into my heart and mind.

If I knew then what I know now…

That my son would be severely disabled.

That I would never sleep a full night again.

That the feeling of helplessness and defeat would overwhelm me daily.

That Malachi will grow into an adult that still wears diapers.

That the probability of me burying my child is overwhelmingly high.

That the mental, physical, and emotional toll this life takes on my body is almost too much to bear.

That the weight of parenting a special needs child takes a toll on marriage.

That life would never be what I dreamed it would and riddled with disappointments and unmet expectations.

…I would absolutely do it all over again. Without hesitation, without regret.

Malachi is God’s child. And God designed him for this earth.

Abortion is not God’s plan. And the pain my heart feels as I watch these celebrations over unspeakable evils is just a tiny fraction to the sadness God must carry over our fallen world.

2 Peter 2:11-12 “Dear friends, I urge you, as aliens and strangers in the world, to abstain from sinful desires, which wage against your soul. Live such good lives among the pagans that, though they accuse you of doing wrong, they may see your good deeds and glorify God on the day he visits us.”

I am finding so much comfort in this verse as it reminds me that we are aliens and strangers in this world. This is simply a temporary place we are passing through, with our end destination routed for an eternal life with God. This world that we are in is riddled and plagued with sin and darkness…but this is not what we were made for.

So what are we called to do in this temporary life in a fallen world? “Live such good lives among the pagans that, though they accuse you of doing wrong, they may see your good deeds and glorify God…”

We are to speak through our actions. We are to be different. Self-denying. Living for His glory instead of our own. We are to live counter-culturally.

Romans 12:2 “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”

 I have been praying that God would unfold more of His calling on my life and lead me to the opportunities to pursue it. I feel that God has given our family a testimony that is meant to be shared, as our lives have stamps of God’s glory written all over them.

This almost feels narcissistic to type but if you ever need a special speaker for your Bible study or event please let me know- I am not an excellent public speaker but would love to allow God to use me as a mouthpiece to share our story with your group. I feel like God is opening a new door for me to pursue so I am walking forward in obedience. Contact me at: jacobandleah@gmail.com

Thank you for being faithful in prayer for our family. We have felt so loved this week by random acts of kindness from strangers, an avenue we know God uses to remind us of His provisions. We are blessed so much more than we deserve. God is good.

Much love,

Leah

 

 

 

 

Dear Tooth Fairy…

Well ladies and gentlemen, Malachi lost a tooth. It was there when we put him to bed and nowhere to be found by 3am when he got up, so we are assuming he swallowed it.

When I noticed it was gone I asked Malachi “Did you lose a tooth?” and his face grew very concerned as he processed my question. I explained to him that when baby boys grow up into big boys their teeth get loose and they fall out to make room for “man teeth” like daddy’s. He really liked hearing that and was so proud.

When we went back into the bedroom around 4:30 he was trying his best to wake up Jake with his sweet little hand to tell him about the tooth. I woke Jake up so Malachi could share the news and we made sure to tell all of his church friends about it this morning.

I also explained to Malachi that some kids believe in something called the tooth fairy, but that she is just pretend. I asked him if he wanted to put a note under his pillow tonight and see if there was a surprise in the morning and he signed “yes, yes”. So tonight we wrote a note!

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The concentration on his face in this picture makes me smile.

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And formally signing his name…

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Let me explain a bit here. As you are surely aware by now Jake and I believe in God! We just simply can’t deny God’s existence, power, and love after witnessing all that He has done in our lives, especially over the last 5 years.

Because of that, we are very cautious to present any imaginary characters as “real” to our boys, especially Malachi. We want him to know about pretend vs real, but never have any confusions about the realness of God. So we don’t do the Santa thing, Easter Bunny, or Tooth Fairy. But we do explain that some people like to pretend just to be silly.

Speaking of imaginations we let him listen to Jurassic Park last night, fast forwarding through the scariest parts. Oh my, he was so into it! Especially the t-rex scenes.

A few more Malachi updates: his neurological fever came back again Friday night. He went from a completely normal temp to 101 within an hour. We stripped him down and it started to drop slowly then took him to hypothermic (96 degrees) by midnight. We bundled him back up and put him under the covers with me and his body finally leveled out within 24 hours.

I get so anxious when these random fevers hit, always wondering in the back of my mind if this will be the sickness that takes him to heaven. That may sound dramatic and over the top to you, but it is a possible reality for me. This is the time of year that I see death after death of children like Malachi in my support groups. It always starts out as something simple like a cold and things spiral downwards very fast.

Our local schools closed on Friday due to sickness and several kids and teachers in Malachi’s class at school have the flu. I am so thankful that I haven’t sent him in over a week and a half!

Malachi got a new toy this week as an early birthday gift from his grandpa and grandma. It is a switch adapted toy where three little penguins continuously climb a set of stairs and one by one slide down the slide. It makes lots of fun noises. We have been trying to use it as a teaching tool for Malachi as there are 10 stairs. We will give him a number to stop on, like 5 steps and he is pretty good at controlling it! He knows his numbers/counting much better than we realized!

And then there is Levi. Wild as ever and NEVER STOPS MOVING!!!

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Levi has been working hard these last few weeks at eating. I remember talking about the g-tube in the NICU and saying “As soon as I get him home we will teach him how to eat in no time.” We felt confident at the time of that statement that he was not aspirating so I felt confident in pushing him. But then we did the rib graft and popped his airway open a bit more. My confidence level in him protecting his airway has been compromised and we don’t want to do anything that might cause him to aspirate. It just isn’t a battle worth fighting hard for right now.

But we want him to be able to handle food from a sensory standpoint so we are working hard in feeding therapy with both boys. Levi has a major control issue so as long as he is in charge of the food source he will tolerate it for a few seconds. He still needs some major convincing before he will put anything in his mouth, but we are making progress. This jello picture was a rare and wonderful moment of bravery on Levi’s part.

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Levi is turning into quite the momma’s boy.

But he sure does love his daddy. This week while Jake was at school Levi called his name over and over again. I thought Jake would enjoy hearing it so I took this short video:

We were pretty non-stop this week taking each day hour by hour. On Tuesday we had a soccer banquet to honor our girl’s achievements this season. It was a wonderful chance to speak some life into these young ladies.

I normally try not to put pictures of others in the blog, but I made an exception tonight for our beautiful MVP for the season…her dad and aunt read the blog each week and I figured they wouldn’t mind 🙂

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Jake and I overexert ourselves quite often. But we never do anything that we don’t feel like God is calling us to do. And we truly believe that God won’t call us to something without giving us the strength and ability to do it. Our plates are more full than most, but it also gives us a greater opportunity to practice fully relying on God like the Bible calls us to do. While we love coaching soccer, we also feel that it is something we are called to do. There are so many young teens in our community that don’t get the chance to encounter Jesus, and if we can plant a seed in their hearts then it is worth all the extra stress and energy.

I have my times of doubt, and even had one this week. Anytime you enter a competitive realm you see sides of people that you may not have ever seen. Each season we are cursed at by parents, berated, and gossiped about. Our reputation, motives, and decisions are always called into question. One of our main coaching goals each season is to build the self-esteem and confidence of each of our players…to be accused of tearing them down is hard to listen to.

I ran into a parent this week and the encounter was so tense it made me sick to my stomach. 99% of the time these emotions that we receive are based on false ideas and rumors but being on the receiving end of all the negativity can be stifling. It is always a difficult pill to swallow when people choose to believe things that go against your character.

After I left the presence of this parent I got in my car and prayed. We have always said that the moment our coaching interferes with our ability to witness to others we need to step away. I thought to myself, “Is now the time?” The next night we had our banquet and I felt the presence of God as Jake and I spoke about each of the girls. As I listened to Jake speak I heard the love of Christ- even though he didn’t mention a single word about God.

As Christians, our desire isn’t to push our beliefs on anyone. Our desire is simply to reflect the light of God to the world. It isn’t our job to change, convert, or convict anyone. That is never a command from God. But we are called to “let your light (God’s presence within us) shine before others, that they may see your good deeds and glorify your Father in heaven.” Matthew 5:16

We don’t ever truly know what the effects of that light on these girls may ultimately be but for now we choose to obey God’s calling and coach.

We have been battling lots of spiritual attacks lately in the roles God has placed us in. Truthfully, it is disheartening and frustrating to be fighting such big battles amidst all the personal ones we have going on. As I prepared the children’s lesson this week I read a verse and it was the reminder I needed…

To set the scene, Moses had just led the children of Israel out of Egypt and they were camping by the Red Sea. They looked on the horizon and saw Pharoh’s army barreling down on them, and as you would expect they started to panic. Moses prayed to God then delivered these beautiful words:

“The Lord will fight for you; you need only to be still.” Exodus 14:14

I can apply this to soooo many areas of our lives right now. We feel that we have been strategically placed by God exactly where we are meant to be (parents to our special boys, coaches, youth pastors…) but we keep looking at the horizon and seeing armies poised to attack. The instinct to panic is strong.

But the truth is that when you are in the will of God there is a confidence in knowing that He will fight FOR you. You need only to be still and listen for directives from Him. There is NOTHING that the enemy can do to overpower you when you are walking in the will of God.

So this week I am going to continue to try to practice the ever-challenging art of being still, even amidst adversity. Being still brings Him more glory that my knee-jerk reactions could ever do. God, please help me to be still in the presence of my enemies.

Final note: This blog really spoke to me this week and addressed a lot of the comments we typically get about us being “super parents”, which is very far from the truth! We are just like every other decent parent, wanting to do everything in our power to give our kids a wonderful life! https://www.patheos.com/blogs/notalonespecialneedsparenting/2019/01/im-not-supermom/?fbclid=IwAR3vQCdPZljoTGEF0mxdEeaqyACJ4r-hVBuNVZZXPyGnYdFj9BnDLVyR75g

May God speak to you this week, and may you be still enough to hear Him!

Love,

Leah

Brotherly Love

This week has been filled with heartwarming brother moments, medical frustrations, and our typical weariness. Let’s start out with a feel good and talk about the brotherly love.

 

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There have been several times this week that I have felt my heart melt in ways I didn’t know were possible. Levi has become infatuated with Malachi and wants to be close to him at all times. The new chair at the office is just large enough for them to snuggle in and Levi is constantly trying to find his way in it to sit with Malachi. Every morning they sit and watch cartoons together or play with a toy.

Levi can’t always activate Malachi’s big boy toys like Malachi; when he gets frustrated by one he will reach over and grab Malachi’s hand and try to get him to show him how, which Malachi absolutely loves. It is so sweet getting to see Malachi be the big brother and to see Levi look to him for guidance. I wish the world could see Malachi through the eyes of Levi!

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Malachi treasures their cuddle time and will even give Levi kisses when they are cuddling. Here is a video:

Levi has been “kissing” Malachi back but doesn’t quite have the grasp of what a “normal kiss” is like- he mimics what Malachi is doing and licks Malachi’s forehead. Then he turns and smiles at me, so proud of his gesture.

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The pureness of their love has made me an emotional mess this week. But those are the type of things I will gladly give my emotions to.

Here is another sweet video of Malachi laughing at the cuddles:

We had a whole slew of appointments this week to navigate around. Dentist, Gastroenterology, feeding therapies, pulmonology, physical therapies….

Malachi has a loose tooth which is an interesting little adventure. He only has one real tooth- all the others have been whittled down and crowned due to lack of enamel. As soon as the loose tooth gets a little looser we will likely yank it to keep him from swallowing it/choking on it accidentally.

Here is a photo of him and daddy playing some soccer this week in his Wild Raptor!

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The GI visit for each of the boys went well and we have made some significant changes in each of their feeding regiments. As usual the doctors want Malachi to plump up a bit more. I have been trying so hard to help Malachi get through the tube anxiety and was able to do one pump feed every day this week.

Levi is one plump little one year old and looking more and more like a big boy these days. He is nearly 21 pounds and big brother is weighing in at 27 pounds.

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This week we tried some sensory play in some mac and cheese…it didn’t make it into his mouth but progress nonetheless.

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Levi also had a pulmonology appointment to get his synagis shot (medication that lessens the effects of RSV if he gets it). These appointments are extremely fast since we don’t have to see a doctor, it is administered by a nurse. The appointment was at the new outpatient center I was telling you about previously. We made the hour drive, checked in and watched our name like a hawk on the screen. One by one every other name disappeared from that screen yet ours remained. I thought “Surely they didn’t forget about us?” seeing as I was staring at the same screen they were.

But alas, we were forgotten once again. I know I have shared this with you before, but there are few things that make me more emotional than being forgotten at specialist appointments. It is so much work to get the boys loaded up and on time to doctors visits and seeing the efforts to respect their time not reciprocated does me in. It had been over an hour and both the boys were cranky, VERY stinky, and momma was emotionally fragile. I fought back tears during the 5 minute appointment feeling more isolated than ever before…even the medical professionals just don’t seem to get it…the difficult nature of our every day.

Of course, the emotions from that carried over into the rest of my week and put me in a dark place. And oh, how dangerous those dark places can be. Jake was gone for two days on a church retreat leaving me with my thoughts.

One of the biggest thought consumers these days has been what the future looks like for Jake and I. Someone posted this picture on Facebook this week and it overwhelmed me a bit.

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This picture portrays the natural route that many parents take. But our picture is meant to be a little different, and sometimes the unknown of that picture attaches itself to my thinking.

Will Malachi still be alive when we are old? And if so, how will we take care of him? We are physically already starting to feel the weight of his care. The idea of an organization having to take on his care when I am unable to makes me nauseous. But so does the idea of having to bury him as a child. I am sure you can see the helplessness of the thinking cycle I get stuck in.

Will we ever get to enjoy grandchildren? We have been recently told that Levi’s brain damage is likely more extensive than we realize. While I choose to believe that God will make his brain whole, there is that realistic side of me that wants to walk down the “what if” paths.

Faith has to be different for Jake and I.

I remember bringing Malachi home and thinking that he was going to be 100% healed, and that no one would believe how healthy and typical he was based on his medical history. We were simply waiting for our miracle, but we just knew it was coming any day.

We still firmly believe that God is able. And we know God can. But we have had to deal with the sadness over the differing timelines we seem to have with God. There have been times that has made me bitter. There have been times that has devastated me.

But these disappointments have transformed my faith. And it has reminded me that we are simply passing through this world, headed towards a more beautiful one.

I read a quote this week and it has played on repeat in my mind. While I find ways to apply it to my motherhood journey I feel that many of you will be able to do the same in your own ways.

“One of the biggest sources of conflict between you and your kids is when they refuse to bow down to your idols.” -Dan Allender

I had to recognize that “normalcy” for my children had become an idol. I find myself getting so angry each time Malachi has a massive seizure, or Levi has to be turned up on his oxygen. It is a reminder of failure and unanswered prayers. The disappointment that hits each time that state of perfection isn’t reached drives a wedge in my relationship with God.

So back to thinking about the boy’s future…that image of “what it should be like” I now recognize as an idol. When we start to think we can whine to God about what our life should be like, we are playing a dangerous game with our faith.

I am also working on releasing my idol of control. And could use some prayers specifically that I find peace in trusting God with the future of my family.

Please also pray for both of the boys. They are both having some intense coughing fits but no other signs or symptoms for now. We have another wild week ahead and can’t afford to add sickness to the mix!

Much love,

Leah

He’s In The Details

Another whirlwind week down in the books for the Carroll crew! Levi’s pulmonology appointment went decently on Monday and the doctor is still pleased at the direction his airway is going. His Cincinnati and Chattanooga specialists are both eager to take a look at his vocal cords to see if there is any new movement, but I am not in a rush to let them take a look. Either way we have bought some time as we have to wait until after his March sleep study results to come back.

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The hospital in Chattanooga recently opened an outpatient center and almost all of his specialists moved to the new building. It is so nice being able to be in an ER free setting for germ purposes, although they decided to put a general care office on the second floor of the building meaning we share elevators with sick kids. Ahhhh rats. But they have some pretty cool things for the kids to see while they wait.

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Tuesday we loaded up and made the drive to Nashville in preparation for Malachi’s Wednesday appointments. It is only a 3-4 hour drive but when you run on zero sleep all the time it is a dangerous situation to be in the car that long. Jake was able to make the trip with me and having some help/company made the trip actually enjoyable. And Malachi is always so happy to go on these road trips and stay the night in a hotel. He giggled uncontrollably for 30 minutes when we all laid down in the hotel bed…and again when he woke up and realized he was still at the hotel on an adventure.

We always try to jazz up our traveling appointment trips with something fun for the boys. We had talked to Malachi about a trip to the Aquarium restaurant but the weather wasn’t so bad so we presented the option to go to the zoo. Malachi signed YES YES about the new option so we bundled up and headed that direction.

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At the Nashville zoo they have a kangaroo enclosure with a walking path through it. The kangaroos come right up to you and you can touch them! Both of the boys really liked seeing the animals up close.

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After our zoo trip we headed over to the hospital to meet with Malachi’s orthopedic surgeon. Out of all of his surgeons, this one is probably our favorite! He shares our vision for Malachi’s life to be all about comfort and quality. We simply want Malachi to be happy and pain free. While we feel that right now he is pain free, we have to assume that his body will take the same route that most kids with his severity of cerebral palsy take and make plans for his future.

Malachi is likely to develop some very severe scoliosis which will make it difficult for him to breathe. Many kids like Malachi end up needing to have rods put into their backs  or spinal fusion surgeries. We also know that both of his hips are out of socket and there is a 50% chance that a big hip surgery is going to be needed. We want to work with both the orthopedic surgeon and the spinal surgeon to make sure we do those surgeries in the correct order. So we don’t have to do either of them more than once.

Hopefully these surgeries are a long ways away, and we are still praying that God preserves Malachi’s body and keeps him pain free!

The post-op part of the appointment went well and he is very pleased with how Malachi’s feet look post op. We will meet with them again in June to start making plans for any future surgeries.

Thursday Jake headed back to school. Malachi also went for a few hours on Thursday and Friday- he really enjoys going and seeing his friends but classroom sickness/germs has been keeping him away. His teachers and I communicate every day and they let me know when they think it is “safe enough” to send him. I am so grateful they are willing to work with us!

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When I dropped him off I couldn’t help but notice how much older he looks these days. He will be turning 6 years old in less than a month…crazy!

Malachi is doing so much better on his CBD oil. He is at the full recommended dosage and we are seeing some pretty big changes. Here is the breakdown:

  • He is having less seizures, having two small ones a day instead of his regular eight a day but they are short and not very severe.
  • He is wayyyyy more emotional than before, and the things that used to trigger seizures now trigger emotional breakdowns.
  • His thinking speed is much better than before and he is able to respond much more quickly to our questions with his signs.
  • He is now a chatterbox! This change has been bringing a smile to my face…I love hearing his voice.
  • His tone is much floppier than before, which means his tight muscles are relaxing on the CBD. This is good for his comfort and spasticity but he struggles to keep his head up.
  • His eyesight has improved a whole lot while on the CBD. We can tell by the way he is actively leaning forward to look at things, showing an interest in anything near him. This is a great change!
  • His brain is relaxed enough to allow him to sleep more. He is now sleeping 6 hours a night instead of his normal 4-5 broken hours and he is taking a nap each afternoon.

His teachers have definitely noticed the change in him and were pleasantly surprised by how well he is doing! It seems we are finally through the adjustment period his body needed to process the change. We are going to start talking to the epileptologist about decreasing his other seizure meds and eventually trying to get him off of one of the anti-convulsants.

This week is a doozy with 9 appointments in four days. We are hoping for a problem free, bad news free type of week.

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Jake and I are continually reminded of how blessed we are. It is undeniable how much God is holding us in the palm of His hand. Early on in our marriage time and time again God would meet our needs before we even knew we needed them. Or we would be conversing about how we needed a washer and a dryer and our phones would ring within the hour with someone asking us if we had a needed a washer and dryer set. We have learned to not believe in coincidences but instead to give credit to God for his providence in our lives.

This Christmas we were gifted some money from some very generous friends and family to go towards the boys care. We talked this week about things that would make Malachi’s life easier and the only thing we could come up with was another PPod chair. Everything in special needs land is insanely expensive and this particular special needs bean bag chair costs a little over $2,000. We applied for a grant earlier this year to get one and Malachi absolutely loves it. He sits very comfortably in it and can easily play independently with his toys.

The only problem is that now that I am working in the church office we need a supportive seat for him to sit in during my office hours. On Mondays I load up the PPod chair and on Fridays I take it back home so we can have it at home for the weekends. It is incredibly large and annoying to haul back and forth each week so Jake and I talked about the possibility of one day finding another one to leave in the office. Obviously paying retail is out of the question.

On Friday I just so happened to pull up Facebook marketplace, something I have never done before. And lo and behold there it was! Someone had JUST posted (an hour and a half before) this exact special needs bean bag seat for cheap and they were only an hour away.

After running through my germaphobe checklist it passed with flying colors (the mom selling is also a self-professed germaphobe) and I made the drive Saturday morning. The chair is the largest size they make so it is ridiculously massive and hot pink but it will work for keeping him comfortable while I am at work.

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God is so good to us- it always amazes me when I see how He loves to work in the details of our lives as much as the big things.

I started a new series with the children at church on Sunday mornings and we are covering Moses and the Israelites. I spend hours in the Word each week preparing for the youth and children’s lessons, continually praying that God will use me as His mouthpiece for what they need to know. Each and every week God is not only preparing me for the lessons He wants me to teach, but also teaching me things through those scriptures as well!

Today we covered the story of Moses and the burning bush. As I prepared the lesson I couldn’t help but relate to Moses on so many levels. God was asking Moses to do something that he truly did not want to do. He didn’t feel qualified, prepared, or eager to do the things God was asking of him. Been there, done that, got the t-shirt.

Exodus 4: 13  But Moses said, “Pardon your servant, Lord. Please send someone else.”

Oh what a relateable quotoe for me. God has called me to a role in motherhood that I was not qualified, not prepared, and not eager to do. Like Moses, I could list excuse after excuse as to why God should choose someone else to do the job.

But the reality is that God knew me better than I knew myself and CHOSE ME for this task as Malachi and Levi’s mother. While I didn’t have a burning bush experience like Moses, I was asked by God to do things that are out of my realm and comfort zone. With that request from God there was also an acknowledgement from Him that it would not be an easy calling. It would be full of obstacles, disappointments, and battles.

When Moses expressed his fear in his mission God gave him an arsenal of tools and signs that would help him through it. He even gave him Aaron, his brother, as his helper.

Reading that story was a needed reminder to me that God will never call us to something without giving us the tools needed to succeed. He will never request something of us that is too much for us to handle. Yes, the journey may be difficult, long, and non-textbook but every step is ordained and redeemed by God if we stay connected to Him through it.

He will give us the impossible, but then prove to us that that word doesn’t exist in His dictionary. I don’t know what mission God may have called you to. I don’t know if your reaction was like mine, or even like Moses’s. Maybe you are still burdened with those feelings of inadequacy.

Let me remind you that you have been called BY NAME for that very mission that you are facing, for that very task. There is a strength and endurance that God sees in you that you likely don’t yet see in yourself. Let me encourage you this week to trust that God is equipping you. And let me also encourage you to stay closely connected to God through that journey so that He can make your impossible His possible.

All He wants is a willing heart and ears that will listen to His still, soft voice.

And a total side note here….I am so blessed to tell you that one of my little ones at church asked Jesus into her heart today! To God be the glory for the great things He is doing!

God bless,

Leah