If It’s the Lord’s Will

We all have them…those things on our to-do list that we really truly don’t want to get to. Week after week they get pushed further down on the list as you try to wish them away. I accumulate several of those “things” on my list and this week I decided to try to tackle a few of them.

I spent hours this week on the phone with medical supply companies, insurance, doctors, and pharmacies trying to shorten that list. It truly is a mind game trying to deal with many of these companies and the psychological effects of hours of hold music is pretty intense. But each time you get to put that sharpie maker line through the list it brings such a rewarding adrenaline rush.

Yep, I am officially a weirdo medical mama haha!

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The boys have had a great week. We tackled a myriad of appointments as well as some added on social activities. My mother had a birthday this week so we celebrated with my brother (who lives locally) on Friday night. He has several dogs and Malachi’s face lighting up with those pups made me realize how much he misses his dogs.

For new readers to the blog, Jake and I had two lovable dogs when Malachi was born. Right before we moved out of our cabin in 2016 we lost one of the dogs to a heart attack. Our other dog went to Ohio to stay with my in-laws while we were living in the Ronald McDonald House in Cincinnati. Sadly, we never go to see him again as he too passed away a few months ago. We really wanted to bring him back to Tennessee but couldn’t justify it at the time with Levi being hooked to so many wires that were susceptible to being pulled out/off of him.

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Malachi loves animals but he really loved his dogs. This weekend planted the seed in my head of getting him another dog in the near future, and possibly even looking into a service dog that could help is detect his seizures particularly at night. I don’t think we are ready for that quite yet but maybe in the future.

Malachi’s quality of life is priority number one for our family and by golly if that means we get that boy a dog then I want to be able to do that for him.

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I had the opportunity to speak to a speech/pathology class at a local college on Tuesday afternoon and share the boys testimonies and medical histories. I love opportunities like these as I hope I can share a parental side of the world they are about to enter that textbooks may not provide. They asked a lot of great questions about the boys.

Levi got some new shoes this week. Can you spot the irony…

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Malachi has a big exciting event coming up! Our small town has decided to set up a giant Christmas tree by the courthouse and they have asked Malachi to be their “grand marshal” and be the one who lights the Christmas tree. I told Malachi about it and he went wild with excitement that they were going to clap and cheer for him. He loves attention and I can’t wait to let him spend a minute in the spotlight. Levi takes so much of our focus and I often feel like Malachi gets overlooked. It is special that this gets to be just for him to do.

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Levi has been a complete train wreck in my office during the week. If he isn’t climbing on the walls he is finding things to dump out all over the floor. It is a mix of exasperating and exciting that we have such typical behaviors in our son. When you have a child that can’t get his body to cooperate with his brain it really changes your perspective when another child does those things.

Here is a video of the mess he made when I stepped out to the bathroom for a minute:

The boys got some early Christmas presents from their grandparents, Malachi getting some new Disney movies to watch and Levi getting some really neat g-tube friendly clothes from a new adaptive line at Target. I took a photo to show you how the clothes work. So cool!

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Levi is still very eager to include Malachi in his games and imagination, this week making sure they both could sing karaoke together.

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If their sweet relationship doesn’t bring a smile to your face then you are a robot haha.

Jake and I are still having the youth group come over to the house on Sunday evenings, hence the later than normal blogs! The group is continuing to grow and we are up to between 35-40 teens at the house each week. We feed them all dinner so I usually start cooking around 2:00 for their 6:30 arrival and the last one leaves between 10:30-11:00. Our Sunday evenings have become a marathon but both Jake and I feel so strongly that this is what God wants us to be doing right now.

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Logistically getting all those teens in our modest house has been a challenge. We successfully tracked down enough seating and space for 30 but as the group grows we have to be more creative so I started looking for a better kitchen table.

Back when we sold our cabin and started the building process we shopped for a new dining room table. Everything we choose to get for the house has to fit our situation perfectly. We took Malachi in his wheelchair and tried him at many different tables, trying to find the best fit for his chair. We found the perfect table that has cafeteria style benches that swing out leaving room for his chair to slide in, but it was $800. I couldn’t justify spending that much on a piece of furniture that would likely take a wheelchair beating and have the scars to prove it.

Fast forward to this week. As I started my search for a table to help increase seating for our youth nights I found the exact table we fell in love with years before. The man selling it had purchased it six months ago and was selling it for nearly a third of the purchase price and was willing to deliver.

I know it sounds like a stretch but it is in moments like these where I am reminded that my God is a God of details. We tried out the table this week with the group and it made such a difference! And Malachi loves it too so it is a win-win.

On Sunday nights I have been studying the book of James with the girls. Tonight we went through James 4 which has a very familiar verse inside of it:

13 Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

I explained to them that at some point in their lives this verse is going to come to life for them. It will grow legs and take on a brand new meaning. There will be a day that they wake up with their plans made but something will go terribly wrong and all of those plans will be meaningless as you struggle to grasp what just happened.

Some of you are probably nodding right now as you reflect on a day your world got turned upside-down.

Obviously for me there are several of these gut wrenching moments…truthfully too many to count. But the biggest ones being the nights that each of my boys were born. Each day started out with a plan in place that had nothing to do with birthing a child. And each day ended with a fresh c-section scar and a baby in a NICU.

There are so many variables in this world that we can’t control. But we like to ignore that fact and assume that we can dictate our path and steer the will of God in the direction that we want.

We spend too much time making plans and trying to make them happen; in reality, we need to be spending more time finding contentment in the will that God has for our lives.

When we read those verses we automatically assume that the command to stop worrying is for our own mental health. But this request from God for our unconditional blind faith is meant to concrete our relationship with Him. He is asking us to let go of our plans and hold His hand while we allow Him to lead us.

There is so much freedom to not worrying about tomorrow.

I say all that, and I bet you $100 I will worry about tomorrow in the next hour as I lay my head on the pillow. It’s an addicting habit that is hard to shake. But God doesn’t expect perfection, He simply wants our heartfelt and persistent effort.

Please be in prayer for Jake and I this week as we combat worry. We have been having a lot of conversations about upcoming tests and procedures for the boys in December and those conversations breed worry. Pray with us that we find contentment in the will of God.

Much love,

Leah

Trust & Obey

Highlights from this week!

The boys painted a massive pumpkin together. Malachi loved the painting part and Levi loved sneaking licks of the paintbrush when mommy wasn’t paying attention. Malachi really gets into art and craft style things and loves the sensory input it gives.

As much as I hate to say it, I think Levi is a sensory kid. I know that is a foreign lingo for some of you so I will explain. Levi has a very hard time dealing with certain materials or situations in which he encounters something he isn’t used to feeling. For example, he can’t physically touch certain foods and certain sounds continually send him into a frenzy.

There is a formal disorder called Sensory Processing Disorder that is defined “a condition in which the brain has trouble receiving and responding to information that comes through the senses.” I don’t know if Levi falls into the formal diagnosis and frankly I am not chasing another acronym for his medical sheet, but it is something I try to keep in mind throughout our day. We try to integrate sensory input into as much as we can to help him.

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Levi has an imagination that blows me away. I always thought you had to teach your child to pretend, but Levi’s imagination is impressively innate.

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Here is he pretending that his french bread pizza is a phone. He was calling his dad even though Jake was sitting right next to him. He usually hands me the “phone” and then gets really mad when I don’t say the right things.

Levi is also impressively helpful these days. He is following two step requests without hesitation and he is genuinely helping me so much. I can hand point to something on the floor of one side of the house and ask him to take it to his laundry hamper and he will go across the house and do it. Or I will ask him to pick up his toys and take them to the play room and he will do it! Kids are super cool.

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There are certain weeks where this special needs mom gig seems easy and natural. Then there are weeks where focusing on the positives is a true challenge. SO much of my day is a mental challenge, trying to convince myself that “I’ve got this!” or “things will be easier tomorrow.”

This week those reality checks kept hitting me in the gut, punch after punch, until I finally admitted what I stuff down inside and don’t verbalize often…this life can be rough!

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Levi stopped sleeping through the night this week. He has been waking up around 5am, and Malachi is locked into 3:15am. I work for hours trying to get both of them to go back to sleep, and can usually succeed with one but not both. The sleep deprivation is a real concern for all of us; I worry about their development if they aren’t sleeping. I am really hoping that the time change will be a good reset for my crew.

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On Monday afternoon we went down to Chattanooga to have some adjustments done on Malachi’s ankle foot orthotics (AFOs). He has grown a lot over the last year and was getting some pressure sores on his ankles from his braces. These appointments don’t usually take long; they just heat up and re-mold his braces in the pressure areas.

For some reason when we walked into the building Malachi started sobbing. It was a shoulder heaving, struggling to breathe cry which doesn’t happen very often with him. I tried to quickly assess what might be going on, making sure I hadn’t pinched him accidentally in his chair and I narrowed it down to a possible tummy ache. I picked him up and put him in my lap to comfort him by singing in his ear and Levi either developed some serious empathy or some serious jealousy, as he too started sobbing uncontrollably. He got so worked up he started to gag and nearly vomited, his face turning colors from all the energy he was using to cry. He wanted to be in my lap too but the support Malachi’s body requires makes that impossible.

So here I was in downtown Chattanooga alone with both boys screaming and clinging to me for no apparent reason. And then the looks of pity came. Pity is an odd thing. Sometimes when I look in the mirror I look back at myself with eyes of pity. But when it comes from others, that is a little harder for me to accept. Maybe it is my pride, maybe it is my protective momma instincts…but the pity looks always get to me.

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It was one of those moments where I really truly wanted to join in their crying, but doing so would absolutely deplete what little energy I have left so I did the best I could to comfort them until everyone recovered. I focused hard on fighting back my own tears…once that floodgate opens I can’t easily turn it off.

Tuesday was our therapy day and I fought back tears again all day. My mind kept flashing back to conversations with Malachi’s therapists when I was pregnant with Levi stating “It will be so odd to have a child that doesn’t have to be at the doctor and therapy office all the time!” But now I have to devote an entire day to therapies for both boys.

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I desperately want to live in a Peter Pan world where I can just imagine that my boys are healthy and strong. A world where their medical issues don’t exist and all they have to focus on in life is being a carefree kid and me being a mom.

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When these thoughts take over I talk to Malachi a lot about heaven. I tell him about all the things he will get to do there…I tell him I am going to chase him but never be able to catch him because he will be able to run so fast! I tell him how Levi and him will be climbing the tallest trees and I will be yelling anxiously after them to be careful (even though it is heaven and tragedies wont exist haha). I tell him one of the things I look forward to the most is seeing him run towards me and wrapping me in a big hug.

When we have talks like this Malachi clings to every word and giggles at the funny parts. He loves to talk about heaven! And it helps me deal with my earthly grief.

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I am absolutely confident that a huge factor in my wayward emotions lately is the fact that Levi is about to turn two years old on the 14th. The birthdays of my boys were both uniquely challenging and my heart hurts when I allow myself to remember each of their births. I do not purposefully focus on those memories, but small things trigger those thoughts.

We went up on Malachi’s CBD oil this week and are seeing some great improvements in his cognitive rate. So much so that other people that don’t know him well are noticing it. The small increase (0.2mls) has also eliminated some daily seizures. There was a day this week that he didn’t have a single seizure that we saw! That is probably the first time that has ever happened.

I am having so much fun dressing these brothers alike. We have decent wardrobes for each boy thanks to generous hand me downs. This week we bought Levi some new shoes, which have to cover his ankle to help him with stability. It was my first experience of true shoe shopping with an opinionated kid and it was quite the adventure. Shoe stores have a whole lot of boxes that apparently need to be reorganized by a toddler.

Levi’s ankles are definitely getting stronger though! This week he mastered climbing his slide and says “I did it!” when he gets to the top. Here is a video:

Earlier this week I saw a photo on Facebook that fascinated me initially then it started to consume my thoughts. It is a photo of a dissected airway of a child who passed away from choking on a peanut. You can actually see the peanut lodged in blocking the air flow.

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As I went throughout the week I thought long and hard about this photo and thought about Levi. If a typical child can die from something as small as a peanut what could happen to my sweet Levi who can’t close his vocal cords and protect his airway. Levi loves food but can’t really eat any large quantities- each bite has to be smaller than my pinky nail. My goal is to get him off of his feeding tube eventually but think about how many tiny bites he would require to actually be full.

I am so proud of the progress he has been making with the types of foods he will eat, but this week I have been so discouraged that while the food experience is fun for him, will we ever actually advance with it? Will Levi be a teenager and still having to cut his food into minuscule pieces?

If I am not very very careful I catch myself mourning over things that have yet to be. It is so wild how dangerous worrying can be to your mental health. Thoughts can so easily consume you and literally change your emotional attitude.

I feel like this blog has been a doom and gloom one unintentionally. Let’s end on some good stuff!

Jake and I have learned over the last six years that we have to give our financial situation over to God. We literally accrue hundreds of thousands of dollars in medical bills each year, some years breaching into the millions. We are very frugal in a lot of ways and don’t believe in having any debt aside from our home. If we can’t afford to pay cash for it, we don’t get it, plain and simple.

Our finances could easily become a worry for us and consume our thoughts, adding just one more stressor to the list. But God has sustained us in ways that a simple blog post can’t even convey.

We have learned to be very sensitive to the leading of God, even when it doesn’t make sense. This week we made several purchases that we felt God leading us to make for others. Things that “on paper” we couldn’t afford to do. On the way home from making those purchases we went out to the local mexican restaurant and met Jake for a 3pm dinner- random, I know. There were two other families in the restaurant whom we had never met or spoken to.

We went to go pay and learned that one of them had purchased our meal, and the other met us in the parking lot and explained that he felt led to give us some money, handing us a significant amount of money. Interestingly enough, the amount needed to cover our purchases for others a few hours before.

God continually takes care of our family in beautiful ways, but he also expects us to be faithful in our obedience to his leading. Jake and I have each had some different callings on our hearts lately that we are working on seeing through. I am feeling led to do another outreach to the ICU moms at our hospital for Christmas so more info on that to come!

Jake has been visiting a homeless tent community in Chattanooga with a few friends from church and he has been working to meet their physical needs before winter fully hits. They made a trip out there yesterday and had the chance to share the word of God with the group as well as bring some tangible needs.

As we prepped for his visit we went through our closets gathering warm things to take. I caught myself viewing things with the mind of “What do we no longer wear.” But as I looked at our four winter coats EACH I rolled my eyes at my innate selfishness and we picked out the best and warmest to pass on to them. How often do we disguise our generosity as an easy way to get rid of useless stuff or junk. Is that really the heart God calls us to help people with?

All this to say, God doesn’t require our money or our expertise in an area. He simply asks for our obedience. We often fret about the details of things when in reality God will go before us and figure out those details.

I think about the Israelites wandering in the desert after leaving Egypt. God literally dropped food from the sky for them and brought forth water from a rock multiple times. When you are walking in His will He will continually provide what you need.

Deuteronomy 2:7. “For the LORD your God has blessed you in all that you have done; He has known your wanderings through this great wilderness. These forty years the LORD your God has been with you; you have not lacked a thing.”

May our eyes always see the ways that God continually provides for our family; and not allow it to become a privilege instead of a undeserved blessing.

God Bless,

Leah

 

Deacon Jake

Let’s start with a funny game. What is wrong with this picture? I am pretty confident you will be able to spot it, but just in case I will put the answer in the P.S. comments at the bottom.

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There are times when my heart feels so full of love and joy, and tonight is one of those nights. As I look at each of my uniquely special boys my heart flutters with the honor of getting to do life with them.

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Malachi has the most forgiving heart. This week he and I have been very frustrated with each other. When he was younger and I would get frustrated I could yell out and release some of that built up anger and Malachi would laugh at my outburst. Now when I yell out in frustration he yells out back angrily and makes sure I know he is mad too. But his sweet little heart can’t stay mad long.

Malachi has a streak of silliness in him that is coming out more frequently these days. He loves to make people laugh and desperately wants to connect with people around him. He is really enjoying school and the independence it gives him away from mom and little brother. He has been able to do school 3-4 days a week from 9:45-2:30 each day! That is a huge improvement from the 2-3 hour chunks we had to do last year without his feeding tube.

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His seizures are down to about two a day and tomorrow we will be increasing his CBD oil to the max dose we are willing to try right now in an effort to take him down to one seizure or less per day.

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Levi has transformed his personality in an unbelievable way over the last 12 months. This time last year he would cry if a stranger looked at him, let alone spoke to him. Now he wants to lead them by the hand all around the grocery store. He is extremely intelligent and has such an awareness of things. He is investigative and won’t move on from something until he has mastered it. He loves to help and can now complete two step instructions, which I take advantage of often when I am trying to take care of Malachi and need a second set of hands.

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And Levi loves his brother so fiercely. To him, Malachi is simply Malachi. He doesn’t see anything different about him. Today I looked over at lunch and they were holding hands, something Levi initiated. Whenever he walks by Malachi at the house he takes time to stop and kiss him on the head or hug him before he continues waddling by.

This is his silly face he makes when he knows he is doing something he shouldn’t do, like stand up in the moving wagon.

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He is also becoming quite the little flirt with the church girls.

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This week has been a wacky one with crazy sleep schedules. On Tuesday we made the trip to the regional semi-finals game with our soccer team where we lost in a sudden death PK shootout. We didn’t get home that night until after midnight and didn’t get everyone medicated and in bed until 2am. That set their sleeping schedules into a whirlwind for the rest of the week, Malachi partying until after midnight some nights. It also seems that he is establishing his new wake up time earlier than before at 3am. I am hoping the CBD increase may help with this.

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Tonight was a special day for our family as Jake was ordained as a deacon in our church. Jake was honored in an ordination service this evening and it was so wonderful to see the other deacons in our congregation welcome him in and pray over him.

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If you aren’t familiar with the Bible and all these church terms, “deacon” means to minister and to serve. There are only about a dozen deacons in our church, and Jake has decided that this is where the Lord is calling him. Jake’s heart has been pulled in the direction of service other the last few years and I think a role like this will continue him on that path.

During the service this evening the pastor made a reference to the story of Jesus feeding the 5,000. In that story, the people have been following Jesus and the disciples and now there is a huge crowd of them. As the day wears on, Jesus recognizes their need for a meal and the disciples start to try to think of ways to feed the crowd.

One of the disciples finds a young boy that has a sack lunch with him that contains 5 loaves and two tiny fish.  And then the miracle happens…Jesus feeds the 5,000 with it!

I have heard this story so many times in my life. It is in four different books of the Bible and I have even studied it within each book with the youth. But tonight God pointed me at something fresh and new He wanted to me to see. He pointed me towards the actions of the boy.

That boy was surrounded by at least 5,000 very hungry people that day and was the only one with a sack lunch (high five to that boy’s momma!) He very easily could have taken his meager lunch around the corner and eat it quickly and quietly under a tree, making certain that his physical needs were being met. He could have done the cautious thing and given just a portion of his lunch.

But instead he willingly gave all that he had. He did so with expectation that Jesus would do something miraculous. He showed faith. He showed the heart of a servant that we are called to cultivate in our own lives.

When was the last time we willingly gave ALL that we have to Christ? We are good at giving meager portions to God, or the chunks in our lives that are leftover when we are through with what we want.

But when was the last time you carried everything up to the feet of Christ and laid it down, expecting Him to multiply what little you have to offer to impact His kingdom?

When was the last time you looked around and saw a need and saw a tiny way to possibly help meet the needs of others.

When was the last time you had the faith of that small boy? How many times has our selfishness gotten in the way of God’s work?

Christ loves to work with mold-able, willing hearts that are eager to see Him in action. Release your 100% to God, regardless of what that may look like to you. For some of us that may be time, for others resources, and others emotions. Take all that you have in those areas and give them over to God and wait patiently to see how He multiplies your meager rations.

I like to think about the smile on that little boy’s face as the disciples likely filled up his bucket to the brim with leftovers from the day. What a story that boy had to tell to his future generations.

What story of God’s goodness do you have to pass on?

Thank you for your prayers for more miracles for the boys!

Leah

P.S. Jake is a school teacher and doesn’t get dressed up often. Since tonight was a special occasion he decided to bring out his fancy shoes. When he bent down and kneeled his shoes both slipped right off of the soles!! I didn’t even know that was possible. He limped through the rest of the evening, finally breaking off in the parking lot at dinner. Time for some new dress shoes I guess haha!

 

Blessed Be the Name

Brace yourself…I have an illogical amount of photos to share from our busy week.

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Jake had the week off for fall break (yes, a wonderful week off that southerners invented) so we did our best to be intentional about using the time wisely. It is so easy to justify NOT doing things when you have children with complex needs. On a pros and cons list we are always heavy on the cons. But we can’t just talk about wanting to give them a typical life- we have to be willing to actually do it.

And almost as if we needed another push in the right direction, 4 of our 6 appointments for the week cancelled on us leaving us with some rare wide open chunks of time.

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On Monday we made a trip down to Chattanooga to go to the zoo. It is a small zoo but perfectly suited to our needs. Levi hasn’t always handled the zoo well and this trip was no exception. Malachi was ecstatic about going and especially about seeing the jaguars.

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Right next to the zoo is a massive handicap accessible playground so we took the boys over to check it out. Levi had never been on a playground before (germaphobe momma) and he loved every second of it. We were reminded that he knows no danger and is still learning the whole concept of cause and effect.

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On Tuesday we hosted the first round of the tournament for the district championship. Our girls were able to snag the win!

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On Wednesday we took the youth group out to a local campground for some tin foil dinners and flashlight tag. Malachi and Levi love spending time with the big kids!

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Thursday was our busy day and started with a trip to the aquarium at Malachi’s request. His eyesight is improving so much and it was exciting to watch him track the fish. He tried hard to catch a glimpse of every creature that came close. Thankfully the otters, sharks, and penguins all got very close to him and swam right within his line of vision.

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Again, Levi was not a fan.

Malachi also got to pet a snake! He waited patiently for his turn as the woman discussed the type of snake and different facts about it. He clung to every word, his eyes wide with wonder. He is such an intelligent kid, I wish you could see how well he handles receptive communication.

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On Thursday night we took our soccer team to their district championship game. The game went into overtime and finally had to go to sudden death penalty kicks. Unfortunately we fell short earning 2nd in the district but we  still have a chance to earn Regional champions. On Tuesday we will travel 2.5 hours (close to the border of Kentucky) to play our first round of the regional tournament.

And then there was Friday! I still had to work on Monday, Wednesday, and Friday this week so we did our best to cram these adventures around my work hours. Friday afternoon we took the boys to the pumpkin patch, which proved to be their favorite adventure of the week!

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Malachi jumped with his daddy on a trampoline style pad and I took a short video to share with you:

Levi soaked it all in and even got to eat some hay before daddy caught him.

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They each picked out a pumpkin which we will be painting soon.

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And we all four rode the cow train which was an interesting endeavor.

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The week was refreshing for us as a family. Sometimes we just need to pretend we are typical, and that is what we really tried to do this week. It is so important for us to create these opportunities for Malachi, knowing that we may not be able to do all these fun things as easily the larger he gets. The photo on the left was from 2017 when I was very pregnant with Levi. You can visibly see how long his legs have grown!

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With less appointments this week we spent a lot more time around the house. I love watching Levi play with Malachi. Their love is so special. Earlier today I was cooking for the youth group and things were suspiciously quiet so I went on a hunt to find Levi. I peeked over the couch to see him sitting on Malachi’s lap and leaning down to give him a  kiss. Their bond is so special.

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Sunday nights have changed dramatically now that we are holding youth group here at the house. I start cooking around 2:30p and the kids come at 6:30 and stay sometimes until 10:00! We get our two to bed and I start writing the blog. I typically finish typing it around 12:30a and then head to bed myself for a few hours of sleep before Malachi wakes up.

Last Sunday night Malachi just couldn’t seem to get comfortable in his bed. He squirmed and wiggled all night long and I checked on him over the monitor what felt like hundreds of times. Levi also has had something GI going on and we have had to fiddle with his feedings, especially at night so he doesn’t throw everything up. Needless to say, it was an up and down night.

Right before I closed my eyes that night I read a post in one of my Facebook support groups about one of the warriors passing away. When that happens in our online community it is always a shock and a blow, as we can all relate to the situation with our own fighters.

This one hit me exceptionally hard though because you could tell by the young boys photo that he was not nearly as severe as Malachi. I read through the comments and found one where a brave momma asked the boy’s mom how he had passed (a question we are all asking but one we don’t want to verbalize). She was very gracious and explained that it was a freak accident. He had fallen out of his bed and his mouth was too close to the side of the mattress causing him to suffocate.

I prayed for that family as I drifted off to sleep, not even being able to imagine what their hearts must be going through.

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Little did I know that on that very night we too would have a scare of our own with Malachi. I posted this to my Facebook page and it just seems appropriate to share it here as well:

It makes me sick to my stomach to even type this, but I just feel like I need to speak it. We almost lost Malachi early Monday morning while we slept.

I recently moved Malachi from our bed back into his room where he has a special mattress that helps keep him in a proper position while he sleeps. We have a baby monitor on him that stays inches from my face every night, one that I obsessively check while he sleeps. I wake up and check the monitor for Malachi and check to make sure Levi (sleeping in a crib next to me) hasn’t gotten any cords wrapped around his neck…something that happens more often than I care to share. I also run my hand over Levi’s belly so I can tell if his tube has been pulled out or burst while he sleeps. I literally do these “rounds” at least 8 times a night.

When I tuck Malachi in at night I have a weighted blanket that we strategically wrap around his lower legs to keep him from contorting his body while he sleeps. Both of his hips are dislocated as are his knees so he doesn’t bend his legs. But he does fold at the waist and fling his pencil straight legs up which causes him to wake up…the weighted blanket helps prevent this.

Malachi usually wakes up around 4am but for some reason he stayed asleep that night. I sleep in a twilight sleep and jump anytime I hear either boy move and around 6:30 I woke up to a very faint noise. I glanced in the monitor and at first it looked like Malachi wasn’t in the bed, but then I saw a tiny movement and realized that he had the weighted blanket up over his face, covering his entire body and head. I am baffled as to how this happened as we are so safety conscious with that blanket and setup.

I ran to his room and grabbed it off of his face and he took a big gasp of air which sent chills down my spine. I snatched him up and held him close and asked him if he was scared and he signed with his mouth that yes he was, which shattered my heart.

Had I not that faint gasp for air over the monitor things could have turned out very differently. He lacks the ability to grab things and I don’t think he is strong enough to push a blanket off successfully. Asphyxiation has always been my biggest fear with him.

All day I haven’t been able to get this incident out of my mind. I keep replaying that visual on the monitor and that sound of his gasp over and over in my head. The guilt is overwhelming and such a heavy cloud on me right now. Last night I couldn’t sleep and instead just watched him, that sick feeling in the pit of my stomach.

Sweet Malachi is so forgiving and has recovered from the incident just fine. But I can’t shake it. Being a special needs mom has a unique set of challenges but knowing that his delicate life rests in my hands is terrifying. There are so many horror stories like this one that didn’t end well- things that could have been prevented with just one tiny change in a routine.

Today I have hugged Malachi and covered him with kisses. I have thrown out that stupid blanket. And I have promised him that I will never make that mistake again.

But I have also prayed over his death. I have prayed that Malachi will always feel loved, safe, and comfortable. That he will never again need to feel the fear and helplessness he experienced this morning. I have prayed that when God carries him to heaven for his complete healing that He will do so in a painless, beautiful way.

This is the special needs mom life. We beg God for life for our children, yet also pray fervently over their death. I never knew a world like this one existed. A world full of so much beauty yet so much sorrow. A world where you are reminded again and again that your child has been entrusted to you for an undefined amount of time. That unknown timeline for their lives can drown you if you let it.

Tonight say a prayer with me for the special needs momma. Pray that the guilt and fear that the devil likes to plant in our hearts would wither and die. Pray for boldness and courage as we fight alongside our warrior children. We can’t afford to be meek. And pray for peace for our weary and worried hearts as this battle can get exhausting.

Needless to say, I spent the next several night watching him like a hawk instead of sleeping. It took me most of the week to get that nauseous feeling out of my stomach as I pondered the “what ifs”. The whole situation shook me to my core.

Our life with Malachi is very difficult, but it is so very special. Just knowing him for these past 6 years has transformed our lives and especially our walk with God. Biblical concepts that seemed so simple have come to life before our very eyes as we navigate the painful parts of faith.

I can’t imagine a life without him.

But I also have to remember that all that we are given in this life is not ours to claim.

The night he was born will forever be etched into my mind. There are certain details that I will never be able to unsee. But as we raced to the operating room and I watched those ceiling tiles whiz over my head I prayed the words of Job over and over again: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”

I don’t know why those exact words came out. I just remember wanting so desperately to plead for Malachi’s life, but also wanting God to know that I trusted Him fully.

Those words have been playing in my mind this week as I think about life with Malachi. Every day that we get to spend with him is a gift from God. I pray that my heart always remembers these words and when that time does come for Malachi to claim his heavenly healing that I will be able to say with my whole heart “Blessed be the name of the Lord.”

Jake heads back to work tomorrow and our chaos resumes! This momma is headed to bed.

Much love,

Leah

 

 

Painful Roots

I had to look through my photo album to try and remember what all we crammed into this week!

We rocked out some therapy sessions. Levi has a hard time understanding when his therapy session is over and brother’s begins. He tends to get very jealous that they are working with Malachi instead of him and tries to join in on the fun.

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We went to the apple orchard with our Chick-Fil-A buddies. We don’t get to meet up very often but it is always fun to spend time with those sweet children. Both Malachi and Levi thoroughly enjoyed the hayride through the apple orchard.

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I was barely pregnant with Levi when the infamous Chick-Fil-A encounter happened which led to the viral post. So it is wild to see how much our families keep changing!

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We ate chicken in parking lots in between appointments. I know that sounds like a weird sentence. But most days we have an hour or so to kill in between appointments and getting the boys out is getting more difficult now that Levi is so mobile. So we find a quiet parking lot and I let Levi join me in the front seat to get some wiggles out and get a few bites of food.

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We all four got our flu shots! Our local pharmacy is absolutely amazing and they come out to the car for our shots so I don’t have to get Malachi’s chair out.

Levi was too young to get his at the pharmacy so we made the drive to his pediatrician in Chattanooga. This was his first ever flu shot which made me a nervous wreck- the last time he had a vaccination he went into respiratory distress and had to be put on 6 liters of oxygen. Thankfully he managed this one well.

While I am very respectful of others opinions about vaccinations, in our world it is a very black and white, life or death issue that we don’t feel like we should negotiate on. When you become a medical momma you are forced into a world where you have to choose a lesser of two evils…we have to prioritize LIFE over all else.

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Levi managed to sprain his ankle on Friday morning which led to a bonus trip to the pediatrician and x-rays. He wasn’t able to put pressure on it for a bit and would fall every few attempted steps so we were concerned he had fractured his ankle but the images showed no break! He has cried several times over the last few days and held his foot so I know it is still hurting but there isn’t much you can do for a sprain other than Tylenol.

He spent a solid day and a half walking like this on the inside of his foot, which in turn caused him to fall over frequently in pain.

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The weather is finally changing here in Tennessee and oh boy are we loving it! The fall days tend to be more overcast so Malachi can comfortably spend time outside without trying to dodge the sunlight. Look at all that eye contact!!! He is such a beautiful child.

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img_0549 Plus now the bears seem to be in hibernation making me much less nervous about letting Levi play on the front porch and in the driveway!

Malachi’s body temperature issues have leveled out but his new wake up time has yet to be determined. We were all over the map this week, some days waking up at 3am and other days waking up at 5am. We obviously are crossing our fingers for him to settle on a late hour!

Speaking of late nights, we have had several with both boys this weekend. In addition to Levi’s sprained ankle he seems to have a slight postnasal drip. Since his airway is very sensitive any drainage back in his throat makes him immediately vomit. We run him on continuous feeds for 8 hours at night and for the last two nights he has been getting up around 4am and projectile vomiting.

On Saturday I attempted a trip to the grocery store with the boys and made it down two aisles before Levi projectile vomited all over the floor. I was trying to use the cart and Malachi’s wheelchair to block the puddle while holding a vomit covered Levi. Thankfully someone in the aisle offered to go to customer service for me and they brought some cleaning supplies. Never a dull moment!

So as a back up plan we are carrying a towel everywhere we go and only feeding Levi small amounts more often than normal. There are no other signs or symptoms in any of us or Levi other than his vomiting which leads us to confidently believe it is an airway reaction and not a virus.

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Levi has started using his imagination a lot and loves pretending that everything is a phone. He always answers it “Hey Dada”and proceeds to have a pretty intense conversation. He hands the phone to me but gets very frustrated when I don’t say the right persons name who is on the “other line”. Silly boy.

Levi is developing a little attitude and it has shocked both Jake and I in a humorous way. For example, one day this week he turned to Malachi and said “I love you” then walked off. I was touched by the sweetness of the moment and said “You love Malachi?” and Levi turned around with a sassy attitude and an eye roll and replied “I just said that.”

He is also picking up some new dance moves. Here is an updated dancing video for you:

Malachi loves Levi but sometimes needs some space (totally relatable, kid). We have been putting him in his activity chair out of Levi’s reach.

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I took this silly video for you and you can just see how happy Malachi is to play with a toy all by himself:

Jake is on fall break this week and we are planning to tackle some big projects around the house. We also have some fun things planned, like painting pumpkins and maybe a trip to the zoo. Malachi has been excited all weekend about extra time with daddy!

Levi is going through a mommy stage and will scream for at least 45 minutes if I leave the house. He is afraid I will leave him if I get out of his sight so he is following me everywhere I turn. I am really hoping this week will help ease that situation as Jake will be staying home with the boys when I go to work.

I’m not going to lie here- this week has been exhausting. There were days I was running on just 3 hours of sleep and trying to whittle down a to-do list that continued to grow. On days like those it is very VERY difficult to show the light of Jesus to people. It is hard to find empathy for others when my day is so chaotic and miserable. We spend hours in waiting rooms each week, hours in the car driving to and from appointments. There is so much unpredictability and when someone adds chaos to my chaos I tend to get angry.

But I have to keep reminding myself that even in these stressful moments, God is refining me. He is bringing my impurities to the surface, the ugly parts of my character, and He desires to scrape those out of my life.

When we are a child of God we need to be okay with the uncomfortable feeling of being refined. We need to be okay with God pointing out our ugly, knowing that His goal is for us to be a reflection of Him…something we can’t do well when we smear our innate ugliness on that mirror that He wants us to be.

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Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

I tend to forget that there is purpose in pain. I forget that in order to really, truly grow I have to develop roots that painfully work their way into the soil but concrete me into that garden of Christ. And once those roots are established I can start to bloom where He has planted me. I can start to display the beauty of the Creator.

But we also must remember that sometimes God uproots us out of our comfortable, established plot of land and tries to plant us in a new garden. Those roots have to be re-established, an uncomfortable but necessary process for us to flourish in our new God-chosen spot.

I pray that my heart always stays soft enough to be uprooted and re-planted, as many times as He requires, and count it all joy each and every time.

This momma is headed to bed! Much love to all of you.

Leah

 

 

Wings & Endurance

I haven’t done a medical update for you in quite awhile so I figured we would kick off with a few updates on each of the boys.

Levi is always the “less complicated” one so let’s start with him. His vocal cords are still very much paralyzed but right now the piece of rib in his vocal cords still seems to be allowing him to breathe safely. At night he will have a desaturation a few times a week but self recovers without me having to touch him. We still keep him hooked to his machines at night so we can keep a close watch on his oxygen levels and heart rate.

He isn’t scheduled for another Cincinnati trip/surgery until June which is amazing! He will be put under anesthesia the day after Christmas for an MRI so we can see if the spots of brain damage have changed since his last MRI. This is being ordered by his neurologist and will give us  a better picture of what impairments we might be looking at. Although he is catching up with his milestones there are several red flags that still indicate that Levi may get a cerebral palsy diagnosis due to some low tone in his legs and core. They typically don’t formally label a child with CP until after their 2nd birthday.

Levi will also have another dreaded sleep study a few days before Christmas to make sure he is still safe to sleep without oxygen. He will still have his routine specialist appointments with neurology, pulmonology, gastrentergology, and the eye doctor but at this point there are no major changes with his care in those departments. He is also getting weekly feeding therapy and physical therapy. He is down to only taking one dose of medicine a day to help control his reflux.

Levi has been fascinated with his g-tube lately which makes me a nervous wreck. He is so sneaky about it too, reaching down the front of his onesie when we aren’t looking. One of my personal goals is getting him to take enough calories by mouth to eliminate having to do any daytime feeds through his tube. We are very far from that goal, but he is making progress. He is even able to eat an entire french fry without choking which is wild!

He is trying to figure out how to run which has made life a little more interesting haha. He is one fast little rascal! And he is mastering this whole temper tantrum thing which to be honest is a bit hard to not laugh at sometimes. That boy could win an oscar award for his performances.

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Jake and I were talking today about how much chaos he has added into our lives, but how wonderfully that chaos and normalcy feels. We can’t imagine life any other way.

Like a sour patch kid, he also has a sweet side and says “I wuv you” to me unprompted at least a dozen times a day. He also pretends that everything is a phone and calls his daddy on it. This morning he was acting up in church and when I turned to get onto him he quickly folded his hands and closed his eyes to pretend like he was praying, trying to get out of whatever lecture he was about to receive.

And just in case you hadn’t already figured out that Levi is a spitting image of his daddy, here is a side by side comparison for your enjoyment:

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Malachi has been so healthy this year, which is something we are confident God has orchestrated. We haven’t had any surprise hospitalizations for him in over a year as his sicknesses have been able to be managed at home. His immune system is still a little wonky so we are still cautious around germs.

Malachi doesn’t have any surgeries or big procedures on the horizon. He has routine appointments with neurology, neurosurgery, gastroenterology, orthopedics, and dentist. Each week for he has feeding therapy, physical therapy, speech therapy, occupational therapy and hippotherapy.

Malachi is taking 7 doses of medication per day, five of those being seizure meds. After his recent neuro appointment we increased his CBD medication a bit to try to control the seizures a bit more. He is down to having about two a day, and the CBD oil increase seems to be helping decrease their severity. We still carry a rescue medication for him in case his seizures last longer than 3-5 minutes but most of his are currently lasting under a minute.

We watch Malachi very closely for any changes since he can’t verbally communicate issues to us. We have to know every detail about him so we can spot a change quickly. When the seasons change sometimes he has a hard time adjusting, so this week he has been dropping his temperatures a little too low at night (just under 97 degrees). When I get him out of bed he is ice cold and it takes at least an hour to get his body temp back to a safe spot.

We had some bloodwork done last week to check his kidney function, something that can be affected by his medications and diet. Some of his medications make him more prone to develop kidney stones so he typically has a lot of debris in his urine. All of his tests came back great though!

Since we increased Malachi’s CBD oil we are noticing him trying to visually see things more. I know I say this a lot, but just in case you are new to the blog: Malachi has something called corticol visual impairment which means his eyes are structurally fine but his brain prevents him from seeing. He has certain settings that you can tell he sees better in (like low and natural light) but he has been trying really hard to look at things this week, regardless of the setting.

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I snapped this photo earlier this week at a soccer game and it gave me chills to see him looking at me. Beautiful boy.

Malachi broke his 4:04 wake up streak PRAISE THE LORD! He seems to be settling on 5:18 but time will tell. It really is fascinating how his little brain works.

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Malachi’s school picture

Malachi’s classmates haven’t been healthy so I kept him home with me for most of the week. I work on Mondays, Wednesdays, and Fridays and obviously both boys came along. The older Levi gets the more difficult it is for me to keep him content sitting in the office. He loves sitting with Malachi and this week I caught him helping Malachi play the keyboard. He held his hand and used it to push down on the keys for Malachi. It was just so sweet.

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Levi loves to open and empty every drawer he can gets his hands on…the copier, the desk, the bookshelf…. By the time Friday rolled around I was mentally exhausted from chasing him around the office and keeping him out of dangerous situations. In an effort to keep him entertained I tracked down a used play kitchen this weekend and filled its drawers with pretend food and dishes. I am crossing my fingers and hoping this is the answer but I am little afraid to get my hopes up. Tomorrow will be the big test!

This week we are hoping to knock out flu shots for all of us. On Malachi’s first birthday he contracted the flu and we almost lost him. We spent two weeks in the ICU battling pneumonia, so for us shots are a must.

There is also a chance that we will get to see our Chick-Fil-A buddies this week at the apple orchard!

Speaking of Malachi’s viral Chick-Fil-A post, a few months ago we were contacted to do a podcast interview about the incident. We conducted the interview via phone on the way home from Cincinnati and it aired this week. Here is the link if you are new to our story and have any desire to listen: https://speaking4him.sermon.net/main/main/21460542

I know I have mentioned this before, but we recently moved our Sunday night youth Bible study from the church to our home each week. We were hoping the atmosphere change would bring more of our youth group teens out on a consistent basis. We also bribe them with lots of food haha. Side note- while it is a ton of work, it really has brought me joy to start cooking for crowds again. And it is so important that the teens know that we love them, and as silly as it sounds food seems to be their love language.

God has been multiplying the numbers each week and we are getting 25-35 teenagers out to study the word of God. GOD IS SO GOOD!

We split the group up and the guys go downstairs with Jake and the girls stay upstairs with me. A few weeks ago I felt a prompting from God that we needed to teach them how to truly study the word of God. Our modern world tries to teach them the the Bible is outdated and full of contradictions; that it isn’t reliable. But I feel so strongly that the Word of God is living and active, sharper than any two-edged sword.

So we changed gears and I give them each a printed out chapter (the message version since it is the easiest for them to understand) and a highlighter. They each read the chapter and mark anything that sticks out to them, confuses them, or pricks their spirit and then we have an open dialogue about each paragraph.

I can’t explain the joy I feel when I get to discuss scriptures with these young women and hear their unique perspectives. There is just something about studying the Bible with other believers that is so special. There is no age distinction when talking about God with another sister in Christ, but how often do we limit our spiritual conversations to people our own age?

Tonight we got to a verse that led to a discussion about the common belief: “God won’t give you anything you can’t handle.” I told the girls that this was not true and by their reactions you would have thought that I slapped their mommas.

They were confident that there was a verse in the Bible that said this very phrase, but the closest verse is found in 1 Corinthians where it says that God will not allow us to be tempted beyond what we can bear without an escape already in place.

They told me that believing this phrase had always brought them comfort and when they are faced with something big and say this quote and it gives them the courage to embrace it head on.

I explained that while that mindset works for them in most situations now, there is going to be a moment in their lives where something comes along that they can’t handle on their own. Even the biggest dose of courage and wishful thinking won’t help them overcome it.

At some point in our lives we will all experience true helplessness. A moment where you feel like you are drowning and there is no foreseeable backup plan to turn to.  There will be a moment in your life where your only option is to lift your hands to God and call upon His name.

When we believe that God won’t give us anything we can’t handle we accept this master/slave view of God rather than seeing the potential for a true RELATIONSHIP with the Father. God wants to DO life WITH us. Not just write out a chore chart and check the list for completion.

While God doesn’t rejoice over our brokenness, He loves to meet us there as we rest in His embrace.

So yes, we will be given things that we can’t handle. There will be things in your life that are too much for you to process, too much to physically take on, too much to bear.

“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

But did you catch those early words: “But those who hope in the Lord…”

When we are faced with a hopeless situation beyond what we can “handle” we are called to put our hope in the Lord and expect Him to give us wings to fly and endurance to complete the journey.

We have seen this firsthand on our parenting journey. We have watched God sustain us physically, mentally, financially when we have been stretched beyond what we can bear. We have watched Him preserve our marriage and allow Jake and I to be one mind and one soul.

We have been broken, but God has always met us in our brokenness. He has been our rescuer, our redeemer.

So my challenge this week is for us all to stop letting our pride get in the way of our relationship with God. What in your life has become too much for you to handle? Instead of repeating the lie over and over again that you can handle it alone, why don’t you try taking the road block to God?

Instead of seeing your inability to fix something as a negative, start to see it as the beautiful thing that draws you closer to the Lord.

God bless you all this week and thank you for checking in on our family.

Leah

 

 

 

The Throne Room

Let’s start off with a video that I keep watching over and over again in amazement…right before I started filming I asked Levi “Who do you love?” Let’s see if you can understand his response:

Levi, the boy with paralyzed vocal cords is speaking clearly and loudly!!! He said “I love my dad alot alot.” When they first gave us his diagnosis when he was one week old they warned us that he would likely not have a voice, and if he did it would be very quiet.

God is so good!

The jealousy bug has infested our house. If anyone or anything is stealing my attention away from Levi he is sure to make his presence known.

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Malachi actually thinks it is funny to hear Levi whine so he encourages the jealousy in his own silent way, making sure to steal lots of kisses when he is sitting with me and Levi is watching close by.

We had a week packed with appointments and Tuesday was our full day. At 11:30 the night before Malachi was still wide awake so I did what all good parents do and I bribed him. I told him that if he went to bed and slept until the sun came up that I would take him for pancakes. He has still been locked in on the 4:04am wake up time and I knew I wouldn’t survive Tuesday’s long day with the tiny chunk of sleep. I explained to him that if he woke up and couldn’t see the light that he needed to be a big boy and close his eyes again.

Jake laughed at my bribe and rolled his eyes. But Malachi stayed asleep until 5:45!! When I went in to get him out of bed after he woke up he was giddy and squealing with excitement. The sun wasn’t technically up but he knew he had lasted longer than normal so we still sprung for pancakes with lots of butter and syrup. Side note- no one warned me how nasty toddlers can get when dealing with syrup. YUCK!

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Our regular therapist is out of town but thankfully the woman taking her place is Malachi’s hippotherapist and both the boys know and love her.

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We knocked out a few more soccer games.

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And I played with a new phone camera a bit and got some sweet pictures of the kids.

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And one of dad just for the fun of it!

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Jake and I are what the youth group teens call “old school”. We use things until they stop working, regardless of how uncool or outdated they may be. I have been using a very old iphone for years but it still worked just fine so I didn’t see a need to swap it out. But over the last two weeks it has been declining FAST, and this week it met it’s end and had to be replaced. But I will say that the photo quality is such a nice upgrade!

Levi has been working on trying new foods and has really enjoyed playing with fruit. We got him to suck on an apple slice which is big considering his oral aversions!

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This weekend I had the privilege of attending a ladies conference in Alabama with a group of women from my church. Aside from the youth group lock-ins, I do not spend the night away from the boys.

Like any trip, it had positives and negatives. Some people from our group had to back out at the last minute leaving we with a room all to myself! It was so nice to just alone in a room, as crazy as that sounds. I really enjoyed getting the chance to spend quality time with my church friends and get to know some of the new ladies that came along.

It was also refreshing to be able to be spiritually fed. Since we are on staff at our church, almost every service time we are expected to be doing something with the youth. Sunday mornings during service is our time to get spiritually challenged but with Levi’s attention span I can’t stay in the service. I listen to it over the speaker in the lobby but get easily distracted so the focused God time was appreciated.

As for the negatives, I forgot how big crowds freak me out. There are so many germs floating around the room and since it was a ladies conference they would stop and do meet and greets way more than normal. My friends understood my germ fears and were respectful but not before a few strangers leaned in for some big bear hugs AHHHH.

While having a hotel room to myself for a night was wonderful in so many ways, it gave me a few PTSD flashbacks that I didn’t see coming. When I laid my head on my pillow and closed my eyes I automatically drifted to the memory of the night Levi was born. Jake had to take Malachi back to the house and I was alone. Levi had already been transferred to another hospital and I was spending the night without either of my children. I remember the tears coming as I heard other moms in the rooms next to me talking excitedly about their crying baby. And there I was, alone with a fresh surgery scar and no baby to show for it. That feeling of disappointment and desperation is something that I will never forget and hit me like a wave this weekend.

But it truly was wonderful to get away for a bit and take a deep breath. I am thankful that Jake was willing and able to keep the kids so I could focus on God.

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I really thought I could do it this week. I was so hopeful that I could successfully go to the eye doctor with Levi and not cry a single tear. But once you have attached an emotion to a particular place and building, it makes it harder to sever those habits.

I gave myself a quick pep talk and wheeled the boys in for the appointment. I think the devil saw my confidence and decided to attack in the waiting room. As I looked around at the other families waiting for their turn I noticed that literally every child in there had a support group with them….both parents, some even also had grandparents….and I started to feel sorry for myself (oh the stinking devil is quick to attack).

Between the two boys we have too many appointments for Jake to even consider taking a day off to attend each one. We are very protective of taking unnecessary days off just in case there is a medical emergency that might take him out of the classroom for weeks.

I could ask grandparents or friends to come along, but to be completely truthful that adds a different stress element to the day. We live so minute to minute and many appointment days cause me to be a stressful bundle of nerves. Adding another adult personality into the mix isn’t worth it from a mental sanity perspective. My decision, but for some reason I was still jealous of all these other eye appointment families/cheerleaders.

The appointment itself went well with no further bad news or surgeries needed. He said that the patching we have been fighting Levi to do seems to be helping but we are looking at having to do two hours of patching daily for the next several years. Hearing all of those facts again set me into that dark place I hate to go to.

I was fighting back tears for the second half of the appointment and when I made it to the car I unleashed those bottled up emotions. I cried as we drove home, mourning over the motherhood picture I was yet again having to modify.

I spend a lot of time each week in the car. Our specialist appointments are all an hour away and our therapies are a thirty minute drive each way. I spend every second of the drive listening to worship music and singing at the top of my lungs.

As I drove down the highway, tears streaming down my face, a song came on that I had heard many times before. But this time was different.

The song is called “Nothing Else” by Cody Carnes and the first line was like a reset button for my hurting heart:

I’m caught up in Your presence
I just want to sit here at Your feet
I’m caught up in this holy moment
I never want to leave
Oh, I’m not here for blessings
Jesus, You don’t owe me anything
More than anything that You can do
I just want You
I had such a visual of me sitting at the feet of God with my tears landing on His feet.
I have visualized this scene so many times, and each time before I have been begging God for something. For Malachi’s life to be spared, for Levi’s healing, for answers, for courage.
But this time was different. I just needed a place to land and mourn. I needed a safe place to let the tears flow. And as I entered that throne room of God I felt his presence. I didn’t want to ask Him for anything, but simply craved being in the presence of someone that understood my struggles and my challenges.
Hebrews 4:16 says “Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Why is it that I wait for a total breakdown to enter into God’s presence? Why is it that I wait until I need to beg for miracles before I go into the throne room of God?
Like the song states: I’m not here for blessings. Jesus, you don’t owe me anything.I just want You.
I have been personally challenged to enter with the confidence that Hebrews refers to. I know my God is a good God. I know He longs to hear my fears, disappointments, and desperation. And He longs to offer his grace to me in those moments.
But my pride gets in the way and keeps me from entering into His presence as much as I should. I use it as a last resort rather than a first reaction….like somehow God’s grace for me is already portioned out and might be wasted on situations that are fixable by me.
So I am praying for more throne room moments. I am praying for more confidence. I am praying that when my heart is hurting I can remember that His grace, His free and beautiful grace is more than enough for me.
I am literally going cross eyed- I wish I had a hidden camera on me so you all could laugh with me at the number of times I have had to jerk my head up and delete a string of nonsense my fingers have typed while I slept. The kids are officially asleep so I am heading that way, but thank you for taking the time to read up on my boys.
Much love,
Leah

 

 

 

The Unseen

This week I had a moment…

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On Thursday morning as I took my 45 second shower and prepped the boys for their day of appointments, I stared at my closet looking for something to wear. We would be at the hospital so it had to hit all the marks on the hospital outfit checklist…no laces that might drag on the ground, soles of the shoes had to be able to be sanitized, comfortable, dark colored shirt in case of a needed blood draw on one of the boys, dark colored leggings in case one of the boys had an accident that made its way onto me (a freakishly common occurrence).

I was in a mood. A negative, cranky mood and I knew I needed to catch that attitude before it made its way out of the house. I reached for one of my shirts with scripture on it as a way to hold myself accountable to act right.

The appointment was a routine one with the gastroenterologist. It is one of the only specialists that the boys share, which makes life a little bit easier. We went through triage with the nurse, getting the boys heights, weights, and updating background information.

I had popped out of my mood for the most part, but when she started reading the list of surgeries for Levi I felt myself slip right back into that darkness. I nodded with each surgery mentioned…all two dozen of them. Then she started the list for Malachi and I slipped even further into the darkness as I flashed back to the scary moments that surrounded most of those 15ish surgeries. Brain surgeries, heart surgeries, stomach surgeries…

As I listened to that list I just felt like such a failure of a mother. Why do my beautiful children BOTH have to suffer so much? Why can’t I fix them?

I had one of those special needs mom moments where you just feel like you aren’t enough. I would like to blame the devil for those thoughts, but in reality they stem from being told time and time again by specialists that I am not doing “enough”.

The doctor came in and we had a decent appointment. At the end of the appointment I asked the doctor: “So what are you going to tell me I should be doing that I am not doing?”

He glanced up from his computer and said, “Actually I am happy with how they are progressing. Keep doing exactly what you are doing.”

In my world comments like that one are rare. Every single appointment and therapy that we go to I leave with a list of things that I should be doing each day. The list is so long that it is unattainable. If I spent all of my focus on that list I don’t know that I could meet its expectations. So each day I have to choose to live minute by minute and do the best that I possibly can for each of them.

I felt my emotions starting to waver with his words of affirmation. Some days that rising water just sits a little too high on my neck.

We tackled 9 appointments this week, 5 of them falling on Tuesday. This week we will have 7 appointments including a trip back to the dreaded eye doctor. Malachi will also see his epileptologist.

This may be too much information, but Malachi’s urine has started to smell strongly over the last few days, which usually means something is brewing in his kidneys. Sometimes it means a urinary tract infection, other times it can be debris building up in his kidneys and trying to form stones. I am watching him closely to see what steps we need to take next. We hate to overreact and take him in for a urine sample (they usually have to use a catheter for that) but don’t want to under-react and allow him the opportunity to develop sepsis.

Levi has been extremely congested since Friday; we are hoping allergies are to blame. He is pretty pitiful but his oxygen levels have been staying up. He is breathing louder than normal so you can tell there is definitely some constriction in his airway but it isn’t to a dangerous level yet.

Let’s talk about some of the highlights of our week!

Levi has started dancing and it might be the cutest and funniest thing I have ever seen. I took a very short video for you:

Jake and I do not dance and have zero rhythm so we truly don’t know where he learned how to do this. I have watched that clip at least a hundred times and laughed and laughed.

Levi is also learning how to wave goodbye, but it is still a work in progress. Here is a clip:

Malachi has been pulling some late nights with momma. He is still waking up at 4:04 on the dot, but he is staying up later as well. We were hanging out in the living room one night this week and I noticed that he was really looking at me. In the low light of the room he was able to see me well. It is always so encouraging to see improvements with his eyes. You never realize how special eye contact truly is until you have a child that can’t easily give it to you.

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Malachi is still absolutely smitten with baby Levi, and the feelings are mutual. We have to keep an eye on Levi because he assumes that Malachi wants to do whatever he is doing and tries to get him involved. Levi is quite the handful these days and drags whatever he can find and carries it all over the house. This afternoon he sneaked up onto Malachi’s lap to show him the can of pumpkin he had snagged from the pantry. When I turned the corner he had gently placed it on top of Malachi’s head like a hat. Malachi loves the randomness and their bond is just heart warming.

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Looking at that chubby belly reminds me to tell you that Malachi is 31 pounds now! Before baby Levi was born Malachi was 40 pounds, and he dropped down to 25 pounds while we were in the NICU in Ohio trying to manage the care of both boys. It devastated me to see such huge physical changes that were a direct result of me not being able to be mom to both boys each day. He has started to put that weight back on and we are seeing some meat on his bones.

Levi has been fascinated with Malachi’s wheelchair so we have been letting him drive it, much to Malachi’s delight.

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Levi is going through a very jealous stage and oh boy is it wearing this momma out. Anything or anyone else that competes with my attention is unacceptable to his little one year old brain. We are dealing with a lot of meltdowns and temper tantrums, which we in turn combat with lots of sitting on mom’s lap and hugs and kisses.

At one of the soccer games this week we were having one such moment and a friend snapped this picture of me trying to help Levi calm down:

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But I love that sweet little annoying boy with all my heart!

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He has also started walking around like a major general with his hands tucked behind his back. We have no idea where this habit came from but it is awfully cute.

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He had a fun morning with his buddies at church this morning.

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Since we end up spending a lot of weird hours awake with Malachi, Jake and I both record several different television shows to keep us awake and help pass the time. I have been so disgusted lately at the content of the television shows and commercials that air so I revert back to the old fashioned shows like Little House on the Prairie and The Waltons. Jake sticks with history channel shows. But we have a few favorites that intersect, like Jeopardy and America’s Got Talent.

This week was the season finale of America’s Got Talent, a talent show that features a variety of performers. The performers go through several rounds and the rounds at the end of the series are voted on by viewers. It is easy to get invested into the contestants and their stories.

But one particular one this season really hit a special nerve for both Jake and I. There was a man named Kodi Lee, a blind and autistic 22 year old singer who also plays the piano. We watched week after week as he was voted through to the next round. And each time he did a new performance you got to see a little bit more of his personality and spirit shine through.

Since Kodi is blind he relied on his mother to walk him out onto the stage each performance and I couldn’t help but be drawn to her. I watched her more closely than I watched Kodi and I felt such a connection to her, especially in the way she looked at her son. There was such a bond between them, a connection that is shared between a son that is locked in his brain/body and his mother.

I saw myself in her eyes.

I have so much pride overflowing in my heart for Malachi. He may not achieve the world’s milestones for a six year old, but he is amazingly special, talented, and intelligent. He is one of a kind. I wish the world could know my Malachi the way that I do. I wish they could see the boy that I see.

Spoiler alert- Kodi Lee ended up winning America’s Got Talent. As they announced him as the winner I watched his mom, even getting emotional at the victory that was taking place. Not only was her son recognized for his above average talent at singing and playing the piano, but voters had looked past his “can’ts” and fallen in love with this young man.

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I saw the emotion overcome her face as she watched her son simply be seen and valued for the unique person he is.

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Oh how my heart connected with hers.

I don’t know why God has chosen me for the task of being a mother to two very special boys. But when I look into the eyes of Malachi I see the love of Jesus and I know that this is right where I am meant to be.

I am not enough for them. I will not ever be enough. But I believe that God stands in those gaps with His overflowing grace and mercy. He carries all of us in the palm of His hand.

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

This week I am choosing to fix my eyes on the eternal unseen. And I pray that God continues to renew me day by day as He has promised.

I pray also that the world continues to look into the eyes of my Malachi, and others like him, and see the beautiful and valuable creation that he is. I pray that Malachi continues to tell people about the love of God without ever having to speak an intelligible word. And I thank God that He has given me the privilege to be a part of his story.

May we always focus on the unseen.

Much love,

Leah

Unstained

Let me just take a few moments and brag on my sweet Malachi.

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Malachi is intelligent, opinionated, and so unique. When people take the time to get to know him they see what a normal little boy he truly is inside. He is mischievous beyond belief and has a very tender heart.

As I have told you before, watching people truly SEE him is one of the best feelings in the world. But with the addition of Levi into our chaotic world I have been guilty of not giving Malachi the opportunity to “talk” to me and give him a voice.

This week I have been trying to be a more conscientious mother and take the extra time to give Malachi more choices in his day. I always want him to know that I see him and value his opinion.

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Malachi has been so excited this week at all the choices he has been getting to make. We do the typical clothing options, food options, and toy options but I want to let him make bigger decisions too. One night this week as we got ready for bed I asked Malachi if he wanted to sleep in the big bed with mom and dad like he usually does and he quickly signed NO. This caught me off guard as he has been sleeping in the bed with us since we came home from the NICU with Levi last March. We had been sharing the bed at the Ronald McDonald House together and it just became a habit. It never occurred to me to offer him another option.

So I asked him if he wanted to sleep in his own room by himself and he squealed while signing YES YES YES!  Each night this week he has chosen to sleep in his own room again, and we have made sure to celebrate his big boy decisions each night.

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In true Malachi fashion, his brain has been locked in on a new time to wake up each morning. This round he is stuck on 4:04 and stays up until about 6:00. His brain fascinates me so much.

Both of the boys have been amazingly flexible this week with our chaotic schedule. We had 5 soccer games in 6 days, 6 medical appointments, and lots of activities with the youth group.

Jake and I are pretty good at switching out our hats for each of the roles we play, but this week we had a lot of overlap so we had to divide and conquer. Saturday morning Jake had to get 21 soccer girls to a tournament and I had to get 16 of our youth group teens + my own kids to the local food bank to fill food bags. Yes, I could have easily found someone to go in my place and supervise the teens but we feel so strongly that the kids need to see examples of choosing to serve over the more entertaining aspects of life.

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As you can also see, Malachi got a haircut this week. But back to the food bank, Levi became the self proclaimed supervisor, distracting them as much as possible haha.

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Afterward we headed to the field to catch the rest of the soccer game. I took a ton of photos this week at the games and couldn’t decide which ones to post so you get to see them all! Levi manages to get filthy at each and every one- I think he just wants to guarantee that he will get to stay up later to get a bath each night…he loves his bath time.

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Malachi’s wild raptor has been such a blessing this week as it gives him an easy way to get from the car to the field and also provides a comfortable place for him to sit during the game.

Side note- the group that modified Malachi’s ride created something called “The Malachi Movement” and are now adapting these for special needs children all over the United States! They are currently working on some for three local families who happen to be buddies of ours through the special needs world, and I can’t wait to see the smiles on their faces.

Levi has been so active lately, running everywhere he can. He is completely done with the whole crawling concept and never stops. As he becomes more active we are starting to hear his stridor come back, which is a reality check to me that we are still in need of a miracle. I have caught my heart mourning a few times this week as I watch him with a soccer ball and realize that sports might not ever be in his future. If his vocal cords don’t wake up, doing anything active that could restrict his breathing can be life threatening for him.

Obviously I don’t care if he plays sports, but the idea of having to have that conversation with him one day makes me really sad. Life will already be different for him as we live our beautifully unique life with Malachi- I just crave some normalcy for him.

But Levi’s talking is improving each day! Tonight I put him to bed and said “I love you Levi” and he quickly responded “I love you too bye bye” as he laid his head down. Jake was in the room and we both looked at each other completely shocked to hear such a complete and appropriate sentence. To God be the glory!

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In a few weeks I will be going to a women’s conference with a group from my church that will require me to be away overnight. I have so much anxiety about those 30 hours. Jake is an excellent and capable father but there are so many things in our routine that have just always solely been on my to-do list.

In an effort to help ease some of the anxiety I have been having to put Jake through a boot camp of sorts making sure he knows where all of the medical items are what to do in case of emergency. On Saturday I had him swap out Malachi’s g-tube so he would know how to put one back in should one of theirs pop again. Malachi’s is easy to switch as he is still and calm. Levi decided to toss the challenge our way on Tuesday night and popped his out when it was unprotected during his bath time.

Getting his back in is at least a two man job but we managed to get it back in quickly. We will just pray Jake doesn’t have to deal with that emergency while I am gone!

The truth is, I am most anxious about bed time as Jake is a heavy sleeper. I am up and down with the boys several times a night, checking g-tubes, fiddling with pulse ox machines, un-kinking Levi’s tubing when the feeding pump alarms go off…on a typical night I am up 6-8 times between 11-4:04 when I wake up with Malachi for round one.

Malachi wakes up every single morning, no exceptions, with a tummy ache which quickly sparks seizures if you don’t address it. It takes at least an hour but more often two hours to get his stomach to a safe enough level for him to relax and maybe go back to sleep. That process is truly an art form haha.

I guess I just have to give those worries about the conference weekend to God and try to capitalize on the uninterrupted sleep…I am not so sure my body will recognize what to do!

This week God has showered our family with blessings. From little gestures to mind blowing generosity from strangers, we are reminded again and again that God is holding our family in the palm of His hand.

This week marks the one year anniversary of our buddy Johnny going to heaven in a motorcycle accident. As this week has approached I have found myself running a myriad of emotions. We have the privilege of being involved with his children’s lives and each time I look at them I can’t help but see Johnny.

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When we first met Johnny ten years ago he was a gruff and angry man. But as the years went on we watched a beautiful transformation happen within in. His anger melted away and God replaced it with such a beautiful spirit that drew you to him.

Johnny lived a radical life for God. He was uncompromising in his faith, especially over the last few years. He craved the gospel and spent time pouring over the words of Jesus- he would come over to the house and talk for hours about verses that pricked his heart. When you talked to him about God he had a unique fire in his eyes.

But there was one verse in particular that he locked in on and couldn’t ignore. I literally cannot read this verse without hearing it pour out of the mouth of Johnny, that’s how much he recited it.

James 1:27  Religion that is pure and undefiled before God the Father is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.

This week I have been focused in on the word “unstained”. I can’t stop saying that line over and over again in my head.

Truth be told, Johnny’s life was far from unstained. Johnny had a past and he fought battles in which the world won. But we are never so stained that God turns away from us. The Holy Spirit continued to pursue Johnny’s stained heart and he allowed himself to be washed clean by the grace of God.

How often do we knowingly open our hearts to the stains of the world and welcome them to become a part of our lives? We even start to see our worldly stains as normal and acceptable, as we look around and see stained Christians all around us. We start to normalize and justify our stains instead of desiring for God to wash them away.

As children of God we are called to keep ourselves unstained. Is that even possible? Our sinful natures are continually drawing us to the things of this world, re-prioritizing God’s place in our lives. I dare say that it is impossible to remain unstained from this world.

So is this verse challenging us to something that we can never truly attain?

Regardless of our human efforts, the stains will continue to come. But the grace of God is so powerful that it can erase every stain from our lives, much like we saw in Johnny’s short life.

But here is the catch….

Do you see the stains? Do you hate the stains? Do you WANT to look different than the world?

God’s desire is that we stand out and look different than the world. His desire is that our countenance that is white as snow would be like a lighthouse for others who need to come and know Him. When we start to blend in with the world we lose that lighthouse effect.

My prayer this week is that God continues to give me the courage to pursue the unstained life. Yes, I will undoubtedly fail at remaining unstained, but the constant pursuit of that life is what pleases the Lord. I pray that God allows me to see my stains and washes me clean yet again with his unlimited grace and mercy. And I pray that God gives your heart the same desire.

Please pray with us this week for miracles. Pray for good reports for our upcoming appointments and safety as we travel back and forth to the hospital this week.

Much love,

Leah

 

 

 

 

 

 

 

 

Wounding Work

This week we dealt with the typical post-sickness battles with Malachi. While the head cold we passed around was very mild, the extra mucus that it created for Malachi set him into some intense seizures each day. He has something called Lennox Gaustat Syndrome (uncontrolled epilepsy) and is having 2-4 seizures on a good day, which is down from his 8-10 he was having daily before his CBD oil. He had a pretty massive 4 minute one on Thursday and I started considering administering his rescue meds, something I haven’t had to think about doing for quite some time. We carry them with us wherever we go and when we administer those we have to call 911 as it slows his respiratory rate down a little too much. Thankfully he popped out of it without any intervention. By Friday morning I felt like he was stable enough to try school for the day.

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A praise report though: Levi was the only one who didn’t catch the cold! That is such a blessing with his narrow airway and something that only the Lord could have orchestrated.

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We canceled all but two of our appointments this week, which was actually pretty refreshing. We get into such a monotonous routine sometimes with therapies and having a surprise break of getting to sit at the house and rest was much needed. To give you some perspective, we still have 29 appointments/therapies left for the month of September. Just process that number…our medical schedule alone gets so overwhelming.

Despite the down time, we still had a few adventures this week! On Friday evening I had taken a solo trip to the grocery store and pulled onto our road at 9pm. As I came up the hill I heard the camera alarm go off on the front porch and assumed it was Jake coming outside to help carry in the groceries. But when I glanced at the camera I saw another very long black bear meandering by the front door.

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When we built our house we designed the front porch to be an extension of the driveway so I could pull under the awning when it is raining to get Malachi out without getting wet. So I cautiously drove up to the front door and sprinted inside, asking Jake nicely to  carry in the bags of food. I just feel like we are constantly being watched by the bears in the woods. It is such a spooky feeling!

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Soccer is also in full swing- this week we have a game on Monday, Tuesday, Thursday, Friday and Saturday. That is insane! Malachi and Levi still love going to the games so we haul out lots of seating options for the kids, a small tent canopy, and enough snacks to keep Levi happy. By the end of the games Levi is usually filthy beyond recognition and exhausted which is a hidden bonus as he sleeps like a rock!

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On Saturday Jake, Malachi, and I went to a friend’s wedding. We were worried that Levi wouldn’t be quiet so when our buddy Tanner offered to sit at the house with him we gladly agreed. We talked the adventure up to Malachi explaining that only big boys got to go to this wedding…no babies were allowed! He felt like big stuff and was extremely well behaved. The ceremony was outside and he got overheated a bit. Interesting fact about Malachi: he doesn’t sweat so his temperature can get a little dangerous. But much to Jake and I’s surprise he was dripping with sweat after the ceremony, so much so that it saturated his hair! I know it sounds crazy, but I get excited when things like this happen as I wonder if his brain is rerouting connections like we always pray for.

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Levi has still been singing while he does just about anything. In fact, right now it is 11:00pm and he is laying in the crib next to me trying to fall asleep…just humming away. His speech is improving and he is adamant when he asks for something, like “Bubble” for Bubble Guppies. He has also been very eager to help with Malachi, like trying to put on his shoes and socks for him. He really has a sweet and tender heart. Here is another sweet video of him singing:

The mix of sleep deprivation and not feeling 100% took its toll on me and I found myself doing the most ding-batty things like putting the TV remote in the car. In addition to all of that, the fire extinguisher in the kitchen at the church had leaked all over the floor and as we investigated what the fluid was I managed to get some of it in me eye. It burned and kept me awake at night even though my body desperately desired the sleep.

This morning in Sunday School our teacher brought up a man named John Bunyan. I remembered the name from a book I read in High School called Pilgrim’s Progress but I didn’t know much of anything about him other than that.

John Bunyan was a preacher in the 1600s who was imprisoned for preaching the word of God, and during this time he wrote several books including Pilgrim’s Progress. He was given several opportunities to be freed if he would vow to stop preaching, but that was a vow his convictions never allowed him to make.

He had a wife and four children who clearly suffered during his time in prison from the lack of financial and emotional support from Bunyan.  One of his children was born blind, and after reading a bit about her you can tell that they had a very special bond.

Bunyan said: “O I saw in this condition I was a man who was pulling down his house upon the head of his Wife and Children; yet thought I, I must do it, I must do it.”

When I look at John’s life I see something that a lot of us choose to look past when it comes to our walk with God.

For true separation from the world and a concrete unity with God, there will be pain involved. Obedience to God’s calling on our lives requires self denial and the desire to pick up your cross and carry it joyfully, seeing the beauty in the sometimes painful journey.

In The Excellency of a Broken Heart he says, “Conversion is not the smooth, easy-going process some men seem to think . . . . It is wounding work, of course, this breaking of the hearts, but without wounding there is no saving.”

There is a wave happening in Christianity today where people choose to focus on the loving attributes of God and not the hard stuff that He asks of us…the obedience and the sacrifice. Our human nature likes to focus only on the things that make us happy and assume that God desperately wants us to be happy- we don’t REALLY want Him to exchange our heart for one like His. We want to pick and choose the things that we like about Christianity and go all in for just the easy, natural parts like loving our neighbors.

But as Bunyan states, conversion is wounding work.

Is your walk with God challenging? Is the Holy Spirit actively working in you, wounding you by cutting off the branches in us that don’t bear fruit?

If there isn’t a little bit of discomfort and pain within your walk with God, are you truly seeking God and asking Him to refine you? To heat you up in blazing fires, to send challenges into your life that bring your impurities to the surface where He can scrape off that dross and remove it from our lives?

I know this is some really intense stuff, but it is something that has been on my heart so much lately. What has it cost you to follow Jesus?

2 Corinthians 5:17 says “Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.”

Have you said goodbye to your old self? Or is one hand grasping desperately to your old self while God firmly holds your other hand that is reaching for Him, choosing to be caught between two worlds that aren’t meant to coexist.

Please join us in prayer this week that God would send us our miracles. Pray also that He continues to give Jake and I a strength that defies all reasoning, and patience specifically for me when my mind is weary and my boys are not.

Much love,

Leah