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