Making a Trade

As we inch closer to Christmas both boys are growing more and more excited. Malachi is very aware that there is a big present for him in the basement that we have been keeping from him for 2 months. And little Levi doesn’t fully know what is going on but he feeds off of big brothers excitement.

This week we met with some folks that are possibly going to help get an accessible area ready for the boys playset. Each time we arrive home Levi races over to the big crate with all the pieces and tells me that there are two slides and three swings. He is very excited!

Aside from a horse therapy session, the boys spent this week in the house. Boredom has definitely kicked in and with the colder weather we are running out of ways to keep them entertained. We watch a lot of movies, read a lot of books, and tackle a lot of projects. Levi’s mischief has kicked into high gear and keeping hands on Malachi and eyes on Levi is proving to be quite the challenge.

Since we aren’t around people much these days, when they do get to see someone outside of the four of us they are wild with excitement. Some of the highlights of their weeks is driving around and just being in the car for a bit.

On a total random side note, I have been worried about Levi’s eyes lately. When COVID hit, his eye doctor canceled our appointment indefinitely and I haven’t pursued reaching back out to them. But as I look at photos like the ones above I am starting to see a bit more wandering going on. At our last appointment he said it looked as though the brain damage Levi has also affected his optic nerve and that he would likely go blind in his left eye. I guess part of me doesn’t want to follow up and hear potential bad news. But then the mom in me wants to make sure I am doing the right thing and monitoring him closely.

One afternoon this week I heard Levi clanging dishes in the kitchen and went to investigate. I watched in fascination as he successfully unloaded and “put away” over half of the dishwasher. He didn’t know I was watching, and I definitely didn’t ask him to do that chore so it was extra sweet to watch him trying to help out. Oddly enough he put most things in the right place or near where they went if he couldn’t reach.

Here is a sneaky video I took:

Jake and I took advantage of his bonus week off from school and tackled some projects that we have had to put off. My van had been leaking a small amount of fluid. I didn’t feel comfortable taking the boys to a repair place for an undefined amount of time, and with Jake working my hands were tied. It ended up taking 2 repair shops and 3 days to get the repair sorted out but it feels so good to have that worry marked off the list.

I saw a meme this week that made me laugh, as it is so incredibly relatable to my life.

In my world I do a lot of pretending to help keep me sane. I pretend that our life looks a lot like everyone else’s. I pretend that other moms go through similar yet different struggles. I pretend like everyone has hidden and unspoken challenges tucked into their day.

And I do believe that to be true.

But when I really reflect on my motherhood journey with unclouded vision I see that I am simply not like other moms. And I am learning to be okay with that.

The cycles of grief that I have to deal with on a daily basis can be overwhelming. The holidays attach themselves to memories like a mark on a calendar of our lives and bring them to life again in my heart.

This was the week we were supposed to announce the gender of a child we miscarried in 2015.

This is the week we sold our dream home…well let me rephrase… this is the week our “dream home” changed from a log cabin to one with full accessibility for our child with high needs. We are so blessed to have built a home for our Malachi, but it also meant putting to death certain dreams as we took a realistic look at the future.

This is the week Levi made that lifechanging trip on an air ambulance to Cincinnati! But it was also the week that he coded in the NICU after arrival and I had to watch helplessly as they manually breathed for him until they could get him on a ventilator.

This was the week Levi had a massive surgery that ended up failing. Leading to another and another and another. He spent that first Christmas sedated and on high flow oxygen through a ventilator, unable to be held. I will never forget the helpless look in his big eyes that Christmas, and the gripping feelings of knowing I couldn’t do anything to help him.

This was the week we spent Christmas in a hotel room in another state eating granola bars and praying over our child in the unit and trying to care for our other high needs child with very limited resources. That year our Christmas miracle was getting into a Ronald McDonald house.

Our lives have been full of such beautiful moments. But it has also been jam packed with really hard ones. The mood I am in determines the lens I choose to look at each day. Most days I choose wisely, picking the lens that will give me a positive disposition. Other days I start with the right lens, but something throughout the day makes me feel justified in a quick lens switch.

This week I have to be honest with you…I have been struggling with focusing on the future. There is no happy ending when you are raising a severely handicapped child. Malachi is doing so well right now, but I am fully aware that as the years go by the medical issues will worsen. Physically caring for him will get harder. More surgeries are inevitable. And at some point he is going to be called heavenward for a complete healing.

I can’t describe how excited I am for Malachi to be spending life whole and healed in heaven. But my mommy heart aches for the struggles that still await him here on earth. And I struggle with mentally prepping for the emptiness life without Malachi will bring.

Oh, what a difficult balance this journey can be. These aren’t things I feel comfortable talking about with other moms. When I do I am met with looks of pity and silence, which definitely don’t bring me out of the hole I dig myself into mentally. Even speaking these to other special needs moms feels inappropriate as I fear I am planting these dark seeds in their hearts by speaking them.

Special needs moms can relate on SO MANY levels, but each journey is completely different. And has to move at it’s own pace. Warning moms of things that are yet to come dashes hopes, so instead we wait for those moments to come and offer open arms to the grieving mom.

So why the special needs mom rant? Why type that all out and share it with you all? I am confident that none of you are tingling with the warm fuzzies after reading all of that.

While your journey may look nothing like mine, there is a good chance that many of you are dealing with unique roads. You may be dealing with things that are overwhelming and like me, you don’t have anyone in your circles to pour your heart out to. And while sometimes I grieve that solitude I have come to see it as a hidden blessing.

The Bible talks so much about how we need to turn to God in these dark moments. For some that may be hard to do. But for some of us, God is literally the ONLY person that I can pour my heart out to. He never looks at me with eyes of pity. He never thinks of ways to change the subject to a more socially appropriate one. Instead he listens intently and restores my soul.

We have the blessing of a life fully and totally reliant on the promises of God.

Matthew 11:28-30 “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”

I have to admit, when I read this verse I have to work hard to process it. The first sentence is so beautifully refreshing. But then verse 29 hits and I realize that there is some work required from us. We have to be willing to make a trade…to lay down the heavy burdens we carry around needlessly on our shoulders and exchange them for the yoke of Christ.

The yoke concept seems restricting and arduous. But yokes were actually designed to relieve the pain, pressure, and discomfort plowing caused for cattle.

The decision to put on the yoke of Christ means that you are acknowledging that the load you are carrying is too much weight for you to bear. Taking on the yoke of Christ can actually bring us REST because it allows God to direct your steps as you live a life fully dependent on Him.

We aren’t promised a life free from burdens. Actually we are told to expect them. The decision is ours on how we carry them. We can continue to expend energy and effort to drag them from day to day. Or we can take them to Christ in an act of true humility and make a trade.

Personally speaking, I am overdue for a trade. The weight of my load is starting to take a toll on my heart and the weariness is overwhelming. I am sure some of you can relate with that feeling as well. So let’s do something about it this week! Join me in prayer that our hearts can recognize our areas of weakness and desire to hand them over to God. Let’s find some rest for our souls this week!

Much love,

Leah

Calling

This week Levi started to potty train himself. I wish we could take some credit but Mr. Independent gets the glory on this one.

We are still very far from being potty trained, but oh the adventures we have had on the attempts. I am still trying to navigate how to make this work logistically since he is still in onesies to keep him from messing with his tummy tube. But we are making progress. Messy progress.

We are also dealing with some new jealousy issues with Malachi and have had to be very aware and cautious with our terminology with potty training. Our instinct phrases are “What a big boy!” and “You’re doing that all by yourself!”

It didn’t take long to notice that those were upsetting Malachi, and when I asked him if he was proud of Levi one morning he very seriously told me “no”. We have been trying to find a healthy way to encourage Levi for the progress he is making while not accidentally making Malachi feel less than.

One day this week Jake and I carried some things to the basement, and Levi naturally followed. When we came back up two minutes later Malachi was crying, upset that we went to the basement without him. He is very aware right now of the things he isn’t getting to do that Levi can do, so we are trying out best to change routines so he doesn’t feel left out.

The boys had horse therapy this week and it was a beautiful afternoon. While Levi rode, Malachi and I sat at a picnic table and he was clearly loving the one on one time with momma. He kept nuzzling his little face against mine and giving such generous kisses.

Parenting Malachi is such a blessing to me, and he brings us so much joy. It also provides challenges I didn’t know existed as far as how to speak worthiness into his little heart. What a smart little boy he is.

Levi has been a busy bee this week, systematically wrecking the house one room at a time! He loves to pretend like he is building things and carries the tape measurer around. When we ask him how long something is he tells us “three” with such a serious, contractor-like face. For Christmas he is getting his very own tool bench and child tape measurer which will be fun.

He is also super excited about his playset, which is still sitting at the base of the driveway in crates. Each time he gets out of the car he runs over and checks it out. We are working this week to get it set up and ready to go. Jake’s school closed due to COVID so he has some bonus time off!

We have had some great weather this week so we have had lots of time on the trampoline. We also spent some time today in the therapy pool! What a blessing to be able to get Malachi in heated water for stretching in the middle of December.

I am so happy to share that our Uganda buddy has officially received enough donations for every item on the wish list. We received an excess of donations and we were able to purchase a swim neck ring and some reusable waterproof diapers for him as well. The items have been ordered and most have already shipped to our stateside missionary. We have a few hand me down items here at the house that are in brand new shape that just didn’t work out as we had hoped for Malachi. We will be taking those to the missionary at the end of the month, but wanted to send her photos so she could make plans on how to transport it.

Thank you again for helping with a project very near and dear to our hearts. I think of all the stories in the Bible where Christ was drawn to those with disabilities, and I can’t help but believe that when we are called to be the hands and feet of Jesus a big part of that is helping children like these.

Jake and I have been so blessed throughout our lives and have such a desire to raise our kids to be a blessing to others. We also hold fast to the scripture “When you give to the needy don’t let your left hand know what your right hand is doing.” (Matthew 6:3) We have been doing some super secret projects this week to help others, and both of the boys get so excited each time we head out to tackle one. We talk about why we are doing what we are doing, and make sure to explain the biblical reasons we are doing each one and they hang onto every word. They also love that it is a secret and Levi makes the “Shhhh” sound from the backseat.

Jake and I have been working on a big project that God has put on my heart. We are hoping to wrap it up this week and send it to the printers, but it has allowed us to plug into the Bible for hours each week. When God gives me a project He always gives me the energy, drive, and zeal to complete it and this one has been no exception.

But this week I have been spending some time thinking about Mary. I know I have talked about her before with you all, and will likely repeat myself in some of the things that I say, but I would love to dump some thoughts out on you all this week.

I have always had an appreciation for Mary as the mother of Jesus, but after having children I feel so connected to her. While our callings are very different, they both have required a complete and total trust in God…something that it undoubtedly hard for me to do. I can only imagine it was just as difficult for Mary, especially thinking about some of the scenes she had to witness in Christ’s life.

But I think about the idea that of all the women on the earth, God chose Mary to be trusted with such a special task. I love the angels introduction to her in Luke chapter 1:

The angel went to her and said, “Greetings, you who are highly favored! The Lord is with you.”

I am continually blown away by this verse. There are so many things in it that catch my eye.

Each of us have a calling on our lives. We often like to look at callings as career paths, or attach them to decisions that we make at the crossroads of our life. We convince ourselves that callings are the things we are naturally good at or talented in.

We so quickly forget that callings are really from the Lord. He has things planned in our lives that we would never choose- things we would be terrified of if we got a glimpse of the whole picture. Things that we are not naturally good at, and things that will challenge us beyond what we think we can bear.

If Mary had been given a snapshot of her baby boy hanging dead on a cross I am sure she would have been tempted to argue with the Lord on her worthiness and strength for such a task. In the same way, if God had given me a snapshot of life with two medically complex kids I very likely would have tried to reject that calling on my life.

“Callings” are something we convince ourselves we can determine. But we have to man determines his ways but the Lord direct his steps.

I find so much encouragement in the angel’s greeting to Mary as it reminds me that God sees a strength in each of us that we don’t know exists. What we see as challenging life God sees as a blessed life, as He showers His favor on us.

Sometimes the hardest things in life can be full of the richest blessings. That is certainly true in our lives, and I hope you can look into the dark parts of your story and pick out the hidden blessings.

The Lord is with you. And you are highly favored by God.

May we always remember the goodness and mysteriousness of our God.

Much love,

Leah

Shrek

For being locked in the house, we ended up having a pretty busy week. Busy is such a relative term these days.

COVID is spiking around this area and the city we frequent for our groceries and errands made the New York Times for being one of the rising areas (#2 on the list). We have been cautious but clamped down even more this week in avoiding that area.

Being cooped up most of the week took its toll on Levi and as much as we have tried to vary activities around the house he has had some three year old tantrums that resulted in him hitting Malachi.

We are trying hard to teach Levi kindness, and when our typical punishments weren’t working we resorted to “grounding” him from being near Malachi for a few minutes, much to Malachi’s enjoyment. This clearly hit the spot for him and he was devastated that he couldn’t be near his brother. When the grounding was up he hugged on Malachi like he hadn’t seem him in years and wouldn’t leave his side. He even went and grabbed the Cheerio bag, knowing that the crinkle of the bag would make Malachi happy.

Oh parenting. I am reminded often that I am not a perfect parent. This week had more reminders than most.

As many of you know, sleep has always been a rare thing for my crew. We made several big changes a few months ago and we have found a new groove that has been helping. One of the biggest changes came from something so incredibly simple…I am beating myself up for not thinking of it sooner.

Malachi is fascinated with superheroes, and we often talk about his muscles make him look like a superhero. He will puff his chest out proudly and put on a superhero face as he flexes his muscles for you.

I told him a few weeks ago that the only way for him to grow and build stronger muscles was to sleep until the sun comes up. Malachi is such a smart kid, but even I doubted that this would really make a difference. The first few nights he would wake up at 4am and I would tell him “Go back to sleep, the sun isn’t up so you aren’t done growing.” And y’all, it worked!! He would drift off back to sleep.

Each morning when he would get up we would dramatically go to the window and check to see if he slept until the sun came up, rejoicing wildly when he did! Then we would go to the couch and check all of his muscles to see if he grew stronger, and help him reach for his toes to see if he grew taller. This has been a new morning routine for awhile now and we have been so happy to see it working.

Levi is now the problem sleeper and I end up getting up and down with him every night. After a particularly difficult night with Levi this week, I was frustrated when Malachi woke up extra early and wouldn’t go back to sleep. I carried him to the window and said “Oh no, the sun isn’t up yet- I guess you just didn’t get to grow last night.”

Malachi burst out into tears when I said this, sobbing uncontrollably that he “didn’t get to grow”. I instantly felt terrible, and reassured him that maybe he did get to grow. But he was devastated. I told him if he closed his eyes and went back to sleep in the living room for a little bit longer that I am sure he could finish growing. And sure enough that was all it took- he closed his eyes and went back to sleep.

Obviously I felt bad for causing so much emotional distress, but seeing him so cognitively active has also brought me so much joy. He acted like a typical, disappointed 7 year old boy and seeing some of those emotions was refreshing to my heart, as weird as that sounds. We often see happy Malachi, and we often see frustrated and sad Malachi, but this was one of the few times we have seen disappointed Malachi. Sometimes these glimpses of typical are what my heart really need to see.

Both of thee boys are growing so long legged! They are each outgrowing their clothes faster than we expected. It is so encouraging to see them both thriving so well. Just take a look at those long legs in this photo- Malachi is getting to be harder to hold as he is catching up to me in height.

And oh my goodness before any rumors start, that is not a baby belly on me…just an awkwardly placed sweatshirt bump haha!

We also got some much needed in-home haircuts from our very dear friend.

Levi has been his busy self, growing more independent by the minute. This week we mastered flushing the real toilet- over and over and over again. Oh boy.

We have been trying a lot of new recipes and Levi wants to be included in all of the meal prep.

Jake got a bonus day off this week as our area got hit with some snow. Our county is extremely large and mountainous so when it snow it affects some worse than others. I snapped this photo for the visual. Some of our county can end up buried in snow and we can have simple flurries on our end.

I asked Malachi if he wanted a Christmas tree this year and he emphatically signed YES, so on Saturday we headed to a local Christmas tree farm down the road and picked out a tree.

I think I underestimated Levi’s excitement over the whole ordeal. As soon as we arrive he started running around like a wild man, clearly enjoying the change of scenery and the freedom to roam. Levi’s new orthotics came in and he has been so much more stable with them.

We choose a tree based on how it feels, not how it looks so we took our time feeling each candidate and letting Malachi decide if it made it to the final round. Levi watched how we moved Malachi’s hand and went around feeling all the trees too.

Malachi really wanted a spikey tree but when Levi felt it he was scared by the sharpness so we opted for a softer one. Both of the boys thoroughly enjoyed the process of Jake cutting it down, and little Levi was a ball of nervous energy watching the scene unfold. He latched onto Jake’s head for a security blanket mid-cut which definitely slowed dad down a bit.

Malachi was giddy with excitement as we drove home! We decorated it this afternoon and each of the boys took turns putting on ornaments. Levi is fascinated with it and Malachi smiles each time we turn the room lights down and the tree lights on.

Uganda update! After just one week and help from lots of amazing friends, we have been able to raise all but $275 for our little buddy. We will be ordering the items this week and are praying now about how we can make sure the family learns about the love of God through these gifts. The missionary will be hand carrying these items over in February and I am so thrilled thinking about how these simple items will change this boy’s life.

Alright, so let’s talk God.

Pre-covid I didn’t have time to mentally dwell on things very long. Life was go-go-go and I could easily distract myself. But now that we are home all day every day I have caught myself dwelling on things and allowing stress to creep in a bit.

One of my main sources of stress lately has been the mailbox, as silly as it sounds. We have been fighting some pretty big insurance battles and have found ourselves on the losing end. Each time I open the mailbox I find myself holding my breath, worried that I will find another unexpected surprise.

This anxiety is a new one for me. We have clearly dealt with medical bills for almost 8 years, and the numbers would blow you away. But we have always walked in faith knowing that God would not call us to this life and not provide the means to walk through it. And God has never let us down!

But now that I have time to dwell I have been mentally going down the “what if” road. This week I could feel myself physically getting anxious as I walked through some “what ifs”. I immediately recognized the power I was giving the devil with my thoughts and I stopped and prayed that my faith in God would be stronger than my fear. I prayed specifically that God would continue to go before our family and fight our unseen battles.

My thoughts immediately drifted to one of our favorite chapters in Philippians.

Philippians 4:6-7 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

The Bible is very clear that anxiousness does not come from God. Like Paul and the unnamed “thorn in his side”, anxiety has become something that I daily struggle with. Oddly enough, with all of the medical emergencies and surgeries we have been through, it wasn’t until COVID made his introduction that this thorn became so prevalent in my life. Back in March it started to manifest itself in physical ways enough that I ended up going for heart workups and testing. I am now on a daily anxiety medication that seems to help, but the anxiety is still very present and something I have to be very aware of. We also found an underlying weird heart issue in the process, but nothing that needs to be addressed or be concerned about.

Like the verse suggests, I went to God with some very specific prayers. It has been a long time since I have been so specific with my prayers to Him, laying some of my biggest sources of anxiety at the foot of His throne. Immediately after verbalizing these petitions to Him I felt overwhelmed with the peace of God, just as the verse assures us. It is always so fun to see firsthand God’s word become so living and active.

I have watched this week as God has very clearly and obviously answered each and every SPECIFIC prayer I laid at His feet. Every single one. Without exception.

My love for God is not contingent on Him answering my prayers or meeting my needs. When we focus on what we can get from God we lose sight of the relationship that God wants to have with us.

But it is in these moments of great blessings that God reminds me that He sees my needs even before I do. Like the Great Shepherd that He is, He is quietly leading me to still waters to restore my soul. And I am so thankful for the great love He has for each of us.

I saw something this week and the image stuck with me so I figure it may be a good visual for you as well.

This is Shrek the sheep.

Shrek ran away and hid out in caves for 6 years before being found. This type of sheep is typically sheered annually, so after so many years on his own without care his coat grew to weigh about 60 pounds.

When he was finally caught and sheered his coat was large enough to make suits for 20 large men.

As I read through this story I saw some of myself in Shrek, as odd as that sounds. How many times do we carry around excess weight unnecessarily? We allow our minds to grow our burdens to the point that they do more damage than good.

All Shrek needed was a shepherd that could meet his needs.

There are a million spiritual parallels that we can find in Shrek’s story. Take time this week to find which one you need to help you grow closer to the Shepherd!

Much love,

Leah

Quality of Life

Our Thanksgiving week was an absolutely wonderful one! We had several friends stop by to see the boys this week, many of them haven’t had the chance to see them in several months. Malachi was giddy with the company and Levi morphed into the tour guide/boss/man of the house.

Levi has been hijacking my phone and taking about 300 pictures a day. Most of them are of his foot but every now and then he has a hidden gem in the mix. This photo was this week’s.

Our very special friends that babysit the boys for us came by Tuesday and let Jake and I sneak away for a date night. It still feels so unnatural and alarming to be out and about without either child, but also so refreshing to be responsibility free for a few hours. Even when I am sleeping I am listening for seizures, feeding pumps, and vomiting so there never really is a chance to shut off the mama medical brain. I cherish those breaks.

Jake’s family came into town this week and the boys loved having the company! Malachi and Levi spent most of the week playing with cousins and fighting over the attention of grandparents. And they slept GREAT this week because of it.

I am still working as the church secretary but we don’t have established office hours anymore due to COVID. I do most of the duties from home, and end up in the office 3-4 times a week for quick tasks. When Jake is off I take the opportunity to go to the office for a few hours and make sure everything is running as it should be.

And now we are on to Christmas season! As each year goes by Jake and I continue to evaluate what we want Christmas to look like for our family. One of the non-negotiables each year is doing a family Christmas service project. I always want my boys to prioritize giving to others in need rather than focus on “getting”. In year’s past we have been in hospitals for the holidays and seeing and experiencing the darker side of holidays has been an eye opener. We typically try to come up with a project for the local NICU but this year we have such a unique and special project picked out!

A few months ago I had a high school friend reach out to me asking about the possibility of getting a wheelchair for a 5 year old boy with special needs in a remote village in Uganda. The more I researched Uganda the more this story tugged at my heart. If you want to have a heart check moment read this article for reference:

https://www.irishtimes.com/life-and-style/health-family/the-hidden-disabled-children-of-uganda-1.4370676#:~:text=Disabled%20children%20rank%20among%20the,out%20of%20sight%2C%20or%20worse.

This little warrior boy seems to be very loved by his family, and they do not currently have any equipment or resources to help with his care. Jake and I spent some time in prayer on how to help, and we feel very strongly that this is meant to be the Carroll Christmas project for 2020.

There are a few details that complicate things slightly. We can’t ship anything overseas to him, so the equipment needs to be compact enough for our missionary friend to take it with her on the next trip in February.

The wheelchair specifically has to be compact enough to fit in the trunk of taxis or they will refuse to transport it. It also has to be able to go off road and we will need to send extra tires for the rough terrain.

We have made our wish list and as we always do we want to open it up to you all as well if you feel led to donate towards a specific item. You can message us for an address if you want to send a check, and paypal is always an option at jacobandleah@gmail.com

So far we have fully funded a bath chair, a portable seating option, an exercise ball, and some small toys that will be helpful with his cerebral palsy limitations.

We are still working to fund the wheelchair stroller and have $100 so far.

We are also hoping to purchase this tree branch swing for him as we know how much Malachi enjoys swinging!

On the cheaper side we have Easy Holds to help him with utensils.

And the final item on the list is some of the super cool bibs we have custom made for Malachi! Our Uganda buddy is also a drooler and we hope it will help cut down on outfit changes and laundry.

There is no pressure to donate, but we thought we share this unique opportunity with you all! I love that we can enrich the quality of life for this boy and his family with some simple pieces of equipment. We are also planning ways to make sure this family realizes how much God loves them through this project.

I have a love/hate relationship with the phrase “quality of life”. It has come up in conversation in meetings with doctors more times than I care to count. For each child it was focused on different things, but I can tell you that with both boys the phrase was used with a negative connotation.

The phrase almost had a haunting nature at the beginning of our journey with Malachi, playing in the background of my thoughts during each big medical set back.

For Levi the phrase was used as a weapon by dozens of doctors and nurses as they pressured us towards putting a trach in Levi’s airway. We were told that it would enhance his quality of life.

Even typing that last paragraph caused reflux to brew up in my throat. I guess the love/hate relationship I just mentioned is actually more of a hate relationship.

It took me many years to realize that “quality of life” is so unique to each child and family. Someone could easily look in the windows of our life and pity us for our trials. They could deem Malachi’s quality of life as very poor. But when I see Malachi, I see one of the happiest 7 year old boys I have ever met! He is loved and cherished, and with those two elements combined I can’t imagine anyone’s quality of life being poor.

And I look at Levi, sweet and resilient Levi who is thriving. Yes, the journey has been a hard one with over two dozen surgeries but oh what an amazing quality of life he has!

We have learned that it isn’t the diagnosis, the outcome, or the journey that dictates quality of life. Instead it is all about the tiny, beautiful moments you collect along the way. When we put so much value and stock into “normal” we put blinders on for finding quality in differences.

Different can be so, so beautiful!

Psalm 139:13-16 “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.”

I like to take this verse and insert my children’s names into it to remind them of how special they truly are. Lately I have been talking to Malachi about how unique and amazing he is, and watching his eyes brighten and a side smile form when he hears those words makes me tear up.

My prayer is that each of us develop eyes that can find “quality of life” in even the darkest of situations. And when we can’t easily find it, I pray that God will give us the courage and abilities to create it, always seeking to enrich the lives of those around us.

Much love,

Leah

Grief

Hallelujah, Jake is on break for Thanksgiving! Our family dynamic changes so much with him home and we get to tag team parenting.

Speaking of turkey day, I left the house early this morning and rounded the corner of our road to find a flock of 14 wild turkeys in the road. Watching turkeys fly is highly amusing and it made me smile thinking about how grateful they must be to have survived Thanksgiving 2020 without ending up on a table. I never imagined I would be rooting for a group of wild turkeys, yet here we are.

Ahh the majestic flying turkey. I snapped a picture to show Jake and seeing their awkward bodies trying to fly brings me joy, so I can only assume it will make you chuckle too. By the time I got my camera out over half had cleverly escaped into the woods.

I have come to the conclusion that if I were a bird, I would most definitely be the turkey in flight- awkwardly trying to act like I have the skill mastered but very clearly stumbling and falling my way through life.

Levi is changing by the minute. He is rounding out into a perfectly chubby little boy and he has such a creative mind. The weather is getting cooler meaning we are spending more time in the house, which really gets Levi’s creative and mischievous juices flowing. More on that one in a minute.

He has been taking it upon himself to do regular temperature checks and it oddly good at it. Whenever I ask him what it says he tells me “three”, so I guess we need to work on reading numbers haha.

And Malachi is perfectly content when we are all home together as a family. He likes going on drives and adventures, but is also happy at home watching a movie. Malachi is also growing, and with his increase in diaper sizes we are having trouble finding pants that fit him well. We ordered some adaptive pants for him from Kohl’s special needs line and I figured I would share it with you in case anyone else reading this could benefit.

They have velcro at the bottoms for easy AFO access and they have zippers on each hip so we can get them over his bulky diaper. They also have a higher waistline and roomier booty to accommodate a diaper.

This week I was feeling the walls closing in and took a drive up the river road to a small town in Georgia. We visited the apple orchard and went for a walk down a small town street, making sure to keep our distance from everyone else. Levi’s orthotics came in the mail and it seemed like a good opportunity to try them out.

But the most exciting adventure this week was an early Christmas present from a relative- a full size trampoline! We told Malachi about it when it was ordered but told him he had to keep it a secret from Levi- a job he took very seriously. When it arrived he was giddy with excitement, patiently waiting for daddy to put it together but oh so excited.

Since he is the oldest we let him get on it first, and as we walked down to the basement to go out to it Malachi was giggling with sheer anticipation. He has never been on an actual trampoline so we weren’t sure how things would go, but his reaction just blew us away.

He LOVES it. He engages all of his muscles in the sitting position with very limited support from one of us, and holds his entire body upright in a way we have never seen before. We didn’t even know he was capable of sitting like that. He loves when you really get him flying off the surface, enjoying the rough play.

Here is a sweet video of Malachi mid bounce:

The weather here has been beautiful so we are hoping to get a few more weeks of trampoline time before the cold weather hits.

Alright, now back to the mischievous Levi. There are many times throughout my day where he makes my heart race with his antics. Like this week when he shoved two goldfish crackers into Malachi’s mouth which he inhaled deep into the back of his throat before I could grab them. It was a scary few minutes but all is well.

But then there are times where he truly warms my heart. This week I heard him saying “Go” while I was cleaning the kitchen and I glanced over the couch to see him playing with Malachi. I filmed it to show Jake later, so I will share the tender moments with you:

He was playing catch with Malachi the same way Jake and I have modeled time and time again. My heart swelled with pride watching him show kindness to Malachi and engage him in a game. I took this video and praised Levi for being so sweet before I went back to doing the dishes.

But as I did the dishes I felt the grief start to creep in.

This week I spoke briefly with a college class in a Q and A special needs parenting session and one of them asked the question: “How did you grieve when you found out that your children would have challenges?” It is a great question, and takes some deep processing to pinpoint the answer.

For Levi we most definitely grieved when we received the diagnosis. We just had so many built up expectations for normalcy and when our steps led us off that path we grieved intensely.

But for Malachi the grief didn’t start manifesting until several years in. We just felt so lucky that he survived against all odds…instead of grief we felt so incredibly blessed! And we still feel so blessed to have such amazingly unique kids.

But the grief started sneaking in after a few years as the reminders became more obvious that our journey wouldn’t match everyone elses.

The grief tends to hit at such weird times. As I did the dishes thinking about Levi’s game with Malachi I started to think about future conversations I will need to have with Levi about his brother. Will he ever mourn that his brother can’t throw the ball to him? Will he ever play the comparison game with his friend’s siblings and start his own journey of grief over the differences?

After dwelling for a few minutes I realized how foolishly I was wasting my time imagining something that may not ever be an issue. The devil is a thief, and he loves to steal my joy from beautiful moments like this one.

And as I often do, I had to make the decision to turn my dark thoughts into an opportunity to grow closer to the Lord. Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent…those are the things God’s Word tells us to think on.

I started to think about those future conversations and realized that Malachi will help bring the Bible to life for Levi! When we talk about the lame man, the blind man, the mute man- those characters will be brought to life, and their miraculous healings will speak so much to his little heart as he can imagine his own brother receiving his healing.

I think about the talks we will have about heaven, and how Levi will grow up in a home where death isn’t feared, but rather it is celebrated as we get to rejoice in total healings!

The Bible tells us in Revelation 21:4 “‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

We have a very unique job of parenting in such a way that we prepare Levi’s heart for the day Malachi will be called to heaven. And we have the ability to lay the groundwork for that day being a huge part in his testimony and journey with Christ.

Oh how real God and His mighty hand are going to be for our little Levi. And yes, there will be some hard conversations mixed in where we get the chance to remind Levi of Isaiah 55:8 “For my thoughts are not your thoughts, nor are your ways My ways, declared the Lord.”

But what a beautiful and powerful testimony Malachi has, and watching it intertwine with Levi’s is a beautiful gift.

When you refocus your thoughts a bit, even moments of grief can be much needed reminders of hidden blessings.

Much love,

Leah

Doritos

It is officially fall here in Tennessee, and hands down my favorite time of year! I had to run an errand last night and spotted three deer on our road so I snapped a quick picture to show Levi. Later I looked at it and couldn’t help bur marvel at the beauty in the photo.

Covid has officially made its way to our small county! Jake’s school is very small, with around 120 in a graduating class. As of Friday they have 89 students in quarantine in his school alone.

Due to the sudden increase in cases we are keeping the boys tucked in as much as possible, but we did have to make a trip to the dentist this week to check on Malachi’s tooth for a suspected cavity. Thankfully it was just a wad of discolored plaque built up on the tooth and we were able to simply get a cleaning. This was the first time Malachi had this done outside of the operating room, and he handled it very bravely. He was super proud of himself afterwards.

Levi didn’t handle it so well, breaking out in sympathy cries for his brother. His medical PTSD is a real thing, and seeing his brother have to go through medical type things gets to him too.

He has been extra sweet to Malachi this week, helping him play without us asking him to. I love watching character and kindness develop in him.

On Saturday we celebrated Levi’s 3rd birthday! Here is a sweet video from the night before:

We changed our plans last minute in an effort to avoid people/covid and decided to go on a drive through the mountains and a family picnic by the river.

Levi got to enjoy some birthday brisket and mac and cheese! We also stopped by Sonic and got each of the boys a slushee in the color of their choice instead of traditional cake.

Both of the boys were very excited to get out of the house, and Malachi was all smiles listening to the fall noises (leaves crackling underfoot, etc).

After our lunch we went to the playground at the campground by our house and let Levi play until he crashed. He was so brave, trying the big boys slides for the first time.

Jake and I always try to be as inclusive as possible with Malachi, but the larger he gets the harder it is to get him safely into the fun. He got to go down the slide at least a dozen times and our muscles are certainly feeling it today.

Levi got a special birthday gift from his grandparents that has kept him busy! He likes to ride it backwards for the extra thrill.

And so does daredevil Malachi with a little bit of rigging!

And we finished off the night with some late night pizza for Levi. As you know, he is not able to eat most foods, but he can do pizza broken off into tiny pieces. He wanted a whole slice to himself and since it was his birthday we obliged.

I stood close by and watched him bite off pieces that were way too large for him to eat. He would chew each bite, thoroughly enjoying the taste and texture. After about thirty seconds he would bring a napkin to his mouth and spit out the mashed pieces and grab the slice for another bite.

I’ve watched him do the same thing over the last few weeks with Doritos. He truly loves them, but his body just isn’t ready for them yet. He goes through the motions, popping in a chip and breaking it down, then trotting over to spit it into the trashcan before reaching for another delicious bite.

I don’t know if it is the youth pastor in me or just the way my brain works, but as I watched the Dorito scene unfold one afternoon I couldn’t help but think there were some spiritual parallels hidden in there. And the more I have watched Levi eat the more my heart has connected with his weird little habit.

When he first started to eat “adult” foods I would stand cautiously by, breaking the large item into tiny pieces for him to easily enjoy. But then one day he snuck into the pantry and I heard the sound of a bag popping open. I watched, horrified, as he shoved a whole red Dorito in his mouth.

But then I watched him start to chew. His eyes which were typically panicky when eating such large bites, were suddenly calm and pensive as he processed what to do next. That’s when the nasty trash can spitting habit began.

I instantly felt foolish as his mom, realizing that when I broke everything down into smaller, manageable bites for Levi that I was not giving him the practice he needed to learn.

Hebrews 5:12-14

In fact, though by this time you ought to be teachers, you need someone to teach you the elementary truths of God’s word all over again. You need milk, not solid food! Anyone who lives on milk, being still an infant, is not acquainted with the teaching about righteousness. But solid food is for the mature, who by constant use have trained themselves to distinguish good from evil.

In the same way that Levi is training himself to break down solid foods, we are supposed to be reaching for the larger and harder pieces in the word of God. It is so easy for us to find the manageable, bite sized pieces of God’s word to digest. There are so many things that are in the Bible that we naturally do as humans, like loving others.

But the Bible is also full of solid pieces that we don’t even want to attempt. When there is work involved we shy away, choosing to stick with the easy milk and not challenge ourselves. It would be like me continuing to teach the same stories about the Bible characters to the youth without progressing the story into what we can learn from them.

That verse also uses an interesting phrase of “constant use”, reminding me that once you start on solids you have to continue on solids. In the same way that I don’t expect Levi to revert to drinking baby formula once he has tasted a grape slushee and daddy’s unsweet tea. Our taste should constantly be growing as we develop in Christ. Once we taste the solids we crave more, searching for new pieces of hard truths we can apply in our lives.

The final purpose of all of this training is to distinguish good from evil. Without a base founded on God we will never be able to develop that compass the verse is referring to.

When was the last time you allowed the word of God to challenge you, and not just tickle your ears?

2 Timothy 4:3

For the time will come when people will not put up with sound doctrine. Instead, to suit their own desires, they will gather around them a great number of teachers to say what their itching ears want to hear.

If the Bible is always saying things that make you feel good about yourself, I want to challenge you to read with fresh eyes and a fresh heart. It may just be that all you are looking for is the milk when you open it’s pages…take some time this week to search for the meat, and don’t be afraid when you find it as you recognize that it is training you for greater things.

Try to find one verse this week that makes you uncomfortable, as it highlights something that is a struggle in your own life. Talk to God about that and ask Him to help you in it.

You might be like Levi and have to chew on it and spit it out, not ready to take it in quite yet. But the practice of the chewing will eventually lead to swallowing those pieces and growing a little deeper in our faith and abilities in Christ.

On a side note, I have received so many messages this week regarding cutting back on the blog posts. Thank you to each of you who reached out. The words in them have rocked me to my core and helped me understand that God is still very much working through this silly blog. I will gladly continue writing these if it brings even one person closer to the Lord!

I am so thankful that we have a group of strangers and friends that are so invested in following our story. It helps give more purpose to our pain to see that our authenticity and honesty is helping others.

Much love,

Leah

Produces

I have spent a lot of time this week stuck in my own head with a million swirling thoughts. Sometimes my brain can be a refuge and other times it can be a dangerous, self-defeating place.

Every year before one of the boys has a birthday I struggle significantly with flashbacks and dark memories. Yes, the day that each of them was born was a day full of miracles but they were also the days that God abruptly perched us at the base of some pretty big mountains.

Jake and I were talking about the conversations we were having exactly three years ago; how wild it would be to have a typical baby that came home from the hospital in just 2-3 days! How wonderful it would be to experience “normal” with a healthy newborn. What a thrill it would be to watch our child be born, and experience that moment firsthand. There was such an excitement and joy as we anticipated Levi’s birth day. We knew the day would have a level of unknown, as he would had to be born slightly premature (doctor’s orders) but we never imagined what was to come.

Instead of the joy filled day we had imagined, we watched as each bubble we had so excitedly created in our minds was popped. I had to go completely under for his birth and Jake was not permitted in the room…we have two children and neither of us got to be “present” for their births. Levi was taken to another hospital with a higher level NICU within the hour of his birth, and once again I was spending the first days of my baby’s life away from them. It just felt so unnatural. The days that followed were filled with shocking diagnoses, unexpected surgeries, and so much disappointment as we watched our “normal” morph to resemble a path that looked eerily similar to Malachi’s.

But nonetheless, it was the day that our beautiful Levi made his debut into this world. As they wheeled me to the operating room that day I remember feeling pressed by the Holy Spirit to pray over him. This same prompting happened when I was raced to the operating room for Malachi the night he was born, and on that night the Spirit put the words of Job on my lips “The Lord giveth, the Lord taketh away, blessed be the name of the Lord.”

But for Levi those words didn’t fit. Instead the words from Numbers starting pouring out of my mouth “The Lord bless you and keep you, make His face shine upon you and be gracious to you. The Lord turn his face towards you and give you peace.”

I had this vision of the light of God when it hit the face of Moses. He was so bright after his encounter with God that the people were afraid of him when he came down from the mountain. My prayer that night was that God would be so present in that operating room that the light of Him would literally reflect from the face of my son. That people would look at his beautiful face and see the countenance of God reflecting off of it.

I can’t say with confidence that the light from God visibly shined from Levi when he entered this world, but I can tell you that the hand and mark of God has clearly been on his life since that day.

I was singing a worship song this week on the way to appointments and the words struck my sensitive heart in such a beautiful way…

You turn mourning to dancing– If I am being truthful, there was more mourning than dancing the night Levi was born. But as God has continued to write our story we recognize that each painful detail of his story has been such an important and vital part of his testimony.

You give beauty for ashes– God scraped together the ashes from our broken and burned dreams and turned them into something so beautiful. I can choose to ignore the beauty and focus on the ashes, but oh how that would dishonor God!

You turn shame into glory– This is a hard one to verbalize. I have struggled with feeling shame as a mother. If we are being honest, my body is 0 for 2 in creating healthy children, and sometimes the devil uses that to influence my self worth. But the more I turn to God on this one, the more He is revealing to me a glory in motherhood that many others never get the chance to experience. I have the privilege of seeing early on that God has created these boys with a unique story, purpose, and calling. They were designed to point others to Him, even from birth.

You turn graves into gardens– I have dwelled on this one all week, and I keep flashing back to the night we arrived to Cincinnati. Levi and I had taken an air ambulance and I remember looking at the lights of Chattanooga under our plane as we started our ascent and feeling so hopeful. Several hours later we got Levi safely tucked into the NICU in Cincinnati and he very abruptly and suddenly coded. They started CPR on his tiny 4 pound body and for the first time those familiar fears of losing a child rushed back from Malachi’s early days. I sat helplessly by his bedside and watched as the doctors mechanically breathed life into his lifeless body. For the first time in his journey, the idea of graves entered the picture.

But as the months slowly ticked by I started to realize that Cincinnati was truly a garden we had been planted in. There is a familiar phrase “bloom where you are planted” and it was in that very unit that we watched our miracle bloom and turn into a beautiful, rare flower.

You turn bones into armies– Oh boy, this one is an easy one. God literally turned Levi’s rib bone into the tiny miracle we needed for him to breathe trach free. God can take ANYTHING, as minute as it may be, and create a miracle right from it right before our eyes. If you want a powerful devotional tonight, read Ezekiel 37:1-14 and apply it to a situation in your life that seems impossible.

You turn seas into highways– We watched this one unfold in Chattanooga as we faced a sea wall in front of us, separating us from willing and eager surgeons in Cincinnati. We faced an impossible situation and watched as God swiftly parted the waters for us to walk on dry land. If we don’t ever face the impassable sea walls, we will never recognize the power and gift of God parting them.

Not many people get to witness modern day miracles, but what a privilege it has been to watch so many unfold in the lives of my children.

Alright, now to venture towards a topic that could be full of land mines…

Let’s talk politics.

I have watched social media from afar this week and seen the myriad of emotions surrounding the election and it’s results. There seems to be a lot of despair among my Christian friends, and it has left me scratching my head a bit.

In the Bible we see time and time again where God has displayed some of His greatest works in dark situations. Without darkness, you can’t understand the power of the light.

The Bible tells us “My grace is sufficient for you, for my power is made perfect in weakness.” Maybe this discourse and lack of unity in our country is the exact weakness that God is talking about in this verse. Maybe we are about to see the power of God work through our nation in a transforming way.

We have learned in our personal lives that sometimes our outcome doesn’t match God’s in specific situations, and our wordly eyes tend to focus on the devastating nature of not getting what we envisioned. But God’s outcome is always more beautiful than the one we imagined and will always triumph.

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.” Romans 5:3-4

I think we often read this verse and focus on the biggies: sufferings, endurance, character, and hope. But tonight I want to remind you of the repetitive word tucked in there: PRODUCES. Each quality is a direct result of success with the previous one.

My prayer is that we can all start to see things with a heavenly perspective. That we can remember that we are strangers wandering through a foreign land and this earth isn’t meant to look like heaven. Our world is ugly, depressing, and innately evil…exactly the type of world that needs a Savior.

Our focus shouldn’t solely be locked in on making this world a more tolerable place; that is a task that will continue to leave us unfulfilled as it is an impossible one…it is entrenched in too much evil. Instead we should be focused on introducing this evil world to our Savior, and trusting God to work through one willing heart at a time.

Neither of the presidential candidates are the answer to the problems in this world. And neither one has the power to undo the plan of God, I choose to believe that God has something big up His sleeve.

Even the godly, annointed, and chosen men that God placed into power in the Bible failed miserably, letting the world oversaturate the Lord’s calling on their lives.

When will we realize that the answer to the darkness in the world doesn’t lie in a party, a man, or a political stance? The Bible doesn’t tell us to put our hope and faith in a man made process.

The answer to the darkness is the light of Christ! Instead of trying to change this world with a vote for a faulty man, let’s change this world with sharing that light inside us with others and allowing God to create a bonfire from it.

Please be in prayer for our family as we continue to process what to do for our family service project this Christmas. I have a lead on something special but want to make sure it is God driven and not Leah driven. Also be in prayer with me about the future of the blog…I would love to continue writing but am trying to decide if weekly posts are still what God wants.

Sincerely,

Leah

The Night Comes

We are so thrilled to share with you how well Levi’s voice is developing. If you are new to the blog, when we were initially given the diagnosis (bilateral vocal cord paralysis) we were told that it would be unlikely that Levi would be able to produce sounds, and that many children with his condition do not have an audible voice. We found a support group that verified this prediction and had to process what that meant for our warrior.

As you know we explored lots of routes for Levi that would allow him to live life without a trach, and settled on the experimental procedure we did in 2017. When we met with the doctors they explained that we would be trading a trach free airway for his voice. Jake and I processed this sacrifice and came to the conclusion that a device free airway was our priority, and resolved to teach him sign language. We also talked with doctors about vocal cord injections down the road to plump them up enough to touch and give him a whisper of a voice.

One of the many perks to living in a small town this week proved to be early voting. I was able to park, vote, and be back in my car in under 3 minutes.

The surgery was successful and we were shocked a few weeks later when we heard him make vocalizations. It actually concerned us because it meant his vocal cords were close enough to touch, which could mean they were close enough to also block his airway. When we traveled back to Cincinnati later that year they explained that the voice would be temporary and he would lose it as his airway grew and the cords moved apart.

But here we are nearly three years later and his voice is strong! The surgeon told us in August that his airway is growing with him and it doesn’t look like his voice quality will be affected anytime soon! Here is a video of him saying his brother’s name:

And one more video for you; we have been working on counting and numbers. He is catching on, but definitely has some fine motor impairments that keep him from being able to count with his fingers. But I am so proud of his willingness to learn.

This week we waged a savage battle against sleep. After several more nights of staying up until 4am with a child (they took turns) I blazed past my breaking point and decided that we simply HAD to find a solution. We revamped bedtime/medication routines and made some other changes to help facilitate success as much as possible.

The biggest challenge that we face each evening is with Malachi’s stomach. Little known fact, Malachi can’t be laid flat unless he is asleep. We even change his diaper with him sitting up! Anytime we lay him flat the air moves around in his belly and sparks his seizures, and getting him back to baseline after is such a challenge so we simply don’t ever lay him down while awake.

Yes, we have spoken with his doctors about this- we even took him to the epileptic monitoring unit at Vanderbilt to have his seizures analyzed and the specialist there said he isn’t the first child they have seen that has gut triggered epilepsy, but it isn’t common enough for their to spend research time and funds on. We had hoped that being able to vent his belly with his g-tube would help, but it hasn’t eliminated the issue.

After we medicate the boys around 9 each night, we have to pick Malachi up and help him burp about every 10-15 minutes. If we don’t do this he will get trapped air in his belly and start having seizures and/or cry most of the night with a tummy ache. This burping process goes on until he falls asleep around 1am, and with as big as he is getting I am physically sore by the time we are done for the day. He has hit the 40 pound mark and is completely dead weight.

Levi goes to bed much easier than big brother, but after he drifts off he is hooked to his equipment (feeding pump and sometimes pulse oximeter machine) for the evening and I want to be close to make sure he doesn’t do anything that would accidentally rip out his tummy tube. He is a mover and a groover so I am up several times a night unwrapping cords and fiddling with machines. I transition him to his bed with walls when I hook him up, and that has been a wonderful blessing for my peace of mind!

But since they both start the night in the bed with mom, this week we moved a spare king bed up in place of the queen. Levi sleeps with blankets and they were getting alarmingly close to Malachi’s face as he fell asleep.

Yes, it is overbearing and obtrusive, but it keeps the boys separated enough to peacefully drift off to sleep. With our new changes in place, I have been able to get all three of us asleep by 1:30 for the last three nights! And Malachi has slept 7 straight hours three nights in a row which has been a HUGE improvement from the 3-4 hours I was getting each night.

I recognize that was way more information than you could possibly have wanted to know about the sleep routines in this house, but alas that has been the main focus of my week. Without sleep, most of my days this week were focused on simply staying awake and keeping my kids alive.

One of the highlights of each week is horse therapy on Mondays. Levi started squealing with joy when we pulled into the parking lot this week, which is a huge improvement from the cries of terror we were getting four weeks ago.

On Saturday we loaded up the boys and took them to a college soccer game to watch two of our former high school girls. You would have thought we were taking them to Disney with the sheer excitement and joy that poured out of them on the drive there. They miss being out and about.

Malachi loves soccer. He loves talking about it, playing it (when his league was in session), and listening to it. He clings to every emotion from the fans and gets enthralled in the game. This is his face when he is intently focusing on something.

We seem to be turning a corner with Levi’s eating, and for the first time I have been able to envision a life with no g-tube for Levi. He is nowhere near that mark now, but his interest in food has grown and he is attempting so many new things. I would love to have him tube free by the time he is old enough to enter Kindergarten.

At his last Cincinnati surgery the pulmonologist was excited to share that it looked like Levi had “taught” himself to safely eat and drink; he said usually adults can do this but kids take much longer. The gap is still there in his airway due to his cords not fully closing, but when they cleaned his lungs there was no sign of food particles or foreign substances.

He still can’t break things down well but he is trying. We gave the kids some candy this weekend and Levi loved the twizzlers but he can’t swallow them. Instead he chews them up and sucks on them for flavor, then spits them into the trashcan before taking another bite. It is a gross process but he is still learning what his limitations are and acting accordingly.

When soccer season ends each year we bask in the newly acquired free time we suddenly have. But that last about two weeks and we start itching to get involved in something else. We are always looking for ways to use our time here on earth to impact others outside of our family, and free time starts to feel like wasted opportunities.

When I was a child I posted a Bible verse right above my bed, literally on the ceiling. I remember reading it for the first time and processing its meaning even as a young child. The words are ingrained in my mind.

“I must work the work of Him that sent me while it is day: the night cometh when no man can work.” John 9:4

Sometimes reading scripture through the eyes of a child is so refreshing, and I remember the straightforwardness and simplicity of the verse had an impact on me. The life of a Christian is about daily carrying out a job description to be the light of the world and the salt of the earth. Every day we should be looking for ways to draw others close to God.

But as I sit here and read that verse again, I can’t help but believe that God was imprinting it on me at such a young age for a bigger reason. You see, John 9 has become one of my favorite passages of scripture and one I feel so strongly applies to both of my boys.

Jesus and his disciples entered a town and came upon a man who was blind from birth. The disciples asked Christ whose sin caused the man to be born blind, a common belief in those times. In John 9:3 Jesus replied “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” Almost immediately the man’s sight was restored.

That verse has worked it’s way to the top of my favorites list as I can’t help but believe that my boys are very intentionally unique. God created each of them with differences for a specific reason, and while they haven’t received a healing, “the works of God” are being displayed in them. My God is not a God of errors, and everything He creates has the ability to bring Him glory! Are you using your weaknesses in life to highlight His strength?

I think back to that verse written above my eyes as they drifted off towards sleep each night as a child, and I can’t help but believe that God was preparing my heart for this unique path and pointing me towards a Bible story that would become my own.

Yes, Jake and I have every excuse to sit at home and focus on our family. But we recognize that our time on earth is a job assignment and that a time is coming “when no man can work.” And my heart can’t shake the feeling that there is so much work to be done.

My mind has switched gears to focus on some ministry opportunities in our community and also planning out what our annual family service project will be for Christmas. We typically like to do something for the NICU mothers but with Covid I don’t know what that will look like. Be in prayer with me that God makes it abundantly clear what direction we need to go in this year.

And a final challenge, for myself as much as for you. Are we excitedly and actively pursuing the tasks God has assigned for us? Or have we turned our walk with the Lord into a job to be completed? Our work for the Lord shouldn’t be reduced to a daily mark on the checklist, but instead our work ethic should reflect our overwhelming love for the Father and our desire to be used for whatever task He assigns us to.

Thank you for continuing prayers of protection over my family. Covid seems to be staying at bay for now in our town. Masks are not required in our school system and we are only having one student at Jake’s school each week diagnosed, which is wonderful statistically. Keep those prayers coming!

Much love,

Leah

Stinky Pits

Do you ever find yourself in a situation and you have to sit back and think “Wait, why am I doing this again?”

I have those moments often, and this week’s moment came when I found myself loading up the boys and heading three hours away for a regional tournament soccer game with our girls team. Malachi had a tummy ache on the way there, which meant lots of pulling off the highway at shady gas stations and trying to burp him. We made it there just in time for kickoff, and by that time I was a stressed mess trying to make sure the needs of my kids were met while attending to coaching the game.

I failed miserably at both jobs, and an hour and a half later I was loading the boys back into the car to make the three hour ride home. The boys were tired of being in the car, and they were both wired by the time we made it home at midnight. As I sat awake with Levi at 3am, I mentally started asking myself the question of “Why are we doing this? Why are we continuing to coach soccer when it requires so much of a sacrifice?”

The next day I was a walking zombie, but that evening we were hosting an FCA Fields of Faith event at our church for the teens in our county. We asked my mom to come to the house and watch the kids for a bit so we could both go and focus on the event. We were so pleasantly surprised when we saw so many of our soccer girls walk through the doors, many of which do not know the Lord.

I don’t ever want this blog to be used as a breach of privacy for people in our circles, so I will summarize with saying that it was a wonderful evening with lots of people growing closer to the Lord, including some of our soccer girls.

God has been reminding me that Jake and I have been called to be seed planters. Sometimes you have to step into the world to find unique places to plant and water seeds for Christ, and for us that is the soccer field. Some years we don’t see the seeds grow, and watching the thorns choke them out can be so discouraging. But then there are years like this one where we see God moving in a group of teens and know that He is hard at work!

On a totally unrelated note, Jake and I do Christmas a bit different for our family and follow “one thing you want, one thing you need, one thing you wear, and one thing you read”. We try to be very thoughtful about the gifts we choose, and this year I have had my eye on a touch activated dinosaur for Malachi’s “want” gift. They are ginormous and will sit within reach right next to Malachi when he is in his adaptive seating. The toy was discontinued in 2009, but I was able to track down a reasonably priced one in Knoxville. We made a quick pit stop on the way to the soccer game and snagged this beauty.

Shhh, don’t mention it to Malachi! He knows we picked up a Christmas gift for him, and the suspense has been making him smile all week. For now the dino is tucked safely in the basement!

The boys are continuing to improve at horse therapy- Levi is enjoying it finally and not bursting into tears when we enter the barn.

As you know, Malachi’s brain damage is extensive and one diagnosis that can go hand in hand with it is precocious (early) puberty. Last week I caught a whiff of body odor and realized that Malachi has one stinky pit. Oddly enough, it is just the one but oh goodness it will knock you down. We have been trying to find a good solution but after showers and scrubbing the smell still holds strong. We picked up some natural deodorant for him and it seems to be working, however Levi has been fascinated watching this whole process unfold. So fascinated, in fact, that he found daddy’s Old Spice and proceeded to cover Malachi’s hands, arms, and cheeks with it. So helpful, right!

I have been having a hard time accepting the BO on my 7 year old son. It seems like such a weird thing to be sad over, but it has spiraled my thoughts toward the realization that, precocious puberty aside, Malachi is growing up. And while my love and acceptance for him will never change, I fear that societies tolerance will change for him when he is no longer a “cute little boy in a wheelchair”. I hope and pray that my fears are irrational and unfounded.

Levi loves Malachi so much, and has been making sure to include him in all of his antics and pretend play. I found Malachi all propped up with an old iphone earlier this week and seeing his inclusive heart for his brother makes me happy. Malachi, on the other hand, didn’t quite know what to think.

On Thursday Jake and I had some friends reach out and graciously offer to babysit the kids so we could go out. For my birthday in March I was gifted a Cheesecake Factory gift card, and covid hit shortly after. It seemed like a perfect night to cash it in and enjoy some time alone. Jake and I spent the evening talking about life, and the many surprises it has yielded.

With Levi’s birthday coming up in three weeks my mind has started to drift towards those early days with him, and the surprise mountain we faced. Sometimes simply verbalizing the struggles can be therapeutic, and this was no exception!

There are certain times each year that trigger bad memories for me, and this particular week each year is always a rough one.

This was the week in 2013 that I was holding Malachi and felt an unnatural jerk from his little 9 month old body. We had been home from the NICU for 5 months and we fully believed that God would completely heal him from his issues surrounding his prematurity.

I will never forget the deep feeling in my gut as the motion of his body felt so rhythmic. I loaded him up and took him to the children’s hospital where they confirmed he was having a rare seizure type called Infantile Spasms- this seizure type has a 75% rate for severe mental retardation. These seizures continue to damage the brain until they are under control and in order to do that we had to start him on an intense steroid, shooting it into his little body twice a day for several months.

We eventually got his seizures under control, but through the course of that leg of our journey our hopes for a normal life for Malachi were dashed a bit. We still believed God could heal him, just we started to understand that His timeline didn’t seem to be matching up with ours.

Fast forward to the next year and Malachi went in for a surgery to correct three minor issues. But while they were in his abdomen they found a very serious intestinal loop that required major surgery. After surgery we were sent to the ICU for a bit, and those memories never leave.

As luck would have it, this was the same week for another abdominal surgery for Malachi in 2018. I am really hoping that eventually we can have the “good” years overpower the “bad” ones for this particular week!

Sometimes I sincerely wish I had a poor memory. I wish I could forget the details, the dates, the facial expressions, the shoe colors of doctors when they delivered bad news. But my mind steel traps them in. I saw a photo of a child in the hospital this week with a particular tape on her IV, and I could immediately smell the tape scent in my mind. I know that sounds crazy, but the details plague me!

I am starting a new study with my youth group this week called “Fake or Follower”, and one of the key concepts is the cost of following Christ. This week I have been reflecting back on different parts of my life, trying to find the ways in which following Christ has “cost” me something.

And during this reflection process God has shown me that the biggest losses for me have been friendships/relationships. I can count time and time again when I followed a direction God has called me to, and as a result friends have been so frustrated or offended that they have chosen to cut ties with me. Some have done so in subtle, gradual ways while others have done so with a barrage of unkind words.

I have mourned so much over those lost friendships, but looking back I would not change the decision I made to pursue the path God called me to. My God is not a God of regrets, especially when it comes to obedience. But I have to be completely honest…each of those lost friendships have hurt me deeply.

The cost of following Christ instead of the world can be painful.

But God has been reaffirming in me that you can’t let the fear of man’s reaction keep you from pursuing the path God is calling you to.

Galatians tells us:

Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.

This week I have let the creaks of loneliness enter my bones. But God has been reminding me that there is a season for everything, and I have to look for contentment in each season.

Please continue to pray a hedge of covid protection around our family. We seem to be narrowly escaping people that find out they are positive, and I am confident that is the Lord’s doing! May he continue to protect my sweet boys and keep this final week in October a healthy and surgery free one!

Much love,

Leah

Empty Cup

This week has been an interesting one. I feel like I say that every week, so maybe interesting is our normal?

Malachi’s appointment with the epileptologist went well and we are going to try to increase his CBD oil a bit more to see if we can decrease some of his seizure activity. We needed to do a blood draw to check his seizure med levels, and I was mortified to find 14 people crammed in a small 15x10ft waiting room. I signed us in and stayed in the hallway as far away from the crowd as possible.

But the longer I sat in the hallway the more I epiphanies I had.

Epiphany #1 was a humbling one: I have no control over my toddler. At home in our bubble he knows the parameters, but in the hospital hallway with an audience in the glass walled waiting room watching him he was a maniac. I teetered between sheer embarrassment and sheer horror as I watched him touch every surface in sight and lay on the what I can only assume to be corona infested floor. This epiphany likely naturally led to the next one…

Epiphany #2 what in the world was I doing?!? Here I was, locked down at the house daily with my boys to protect them, and now waiting in a line in a hospital center that has a general pediatrics walk in clinic inside of it…and only one blood lab. I started looking at the kids inside the glass walled room and saw a variety of sickly looking eyes staring back at me. One of the poor children had sweated through her pajamas, and her hair was drenched with sweat. Another baby was stripped down to a diaper, eyes red and sickly.

I started to ponder what the best parenting move was in this situation: check seizure med levels or leave and protect them from potential sickness.

When Malachi heard about the blood draw

Epiphany #3 was realizing that I am not confident in the children’s hospital to do what is truly in the best interest of my family. This is a thought I have entertained many times before, but it is in moments like these that I have to remember that even in the medical settings with professionals I must advocate for my children.

In the end we made the decision to wait in the hallway for nearly an hour, and I resorted to empty time out threats with my tyrant, corona hungry toddler touching every surface he could.

Malachi handled the blood draw like a professional, which he actually is with the hundreds he has had to have in his lifetime. When the blood drive lady remembers his name and his “24 weeker veins” you know you are a regular.

By the time we left the building my blood pressure was soaring and I was in a pretty angry mood. I also realized that my emotions had overtaken my parenting and I hadn’t been the nicest mom for the previous 3 hours so I decided to stop by the zoo on the way home so Malachi could see his jaguar friend.

The adventures continued this week thanks to sweet little Levi. On Wednesday we were racing around to get out the door and I ran into the bedroom to grab my shoes from the closet. I heard the bedroom door shut and a sinister laugh came from Levi as he ran in saying “door door door”.

Earlier this week around midnight he locked me in the bathroom by implementing the child proof door lock. Jake was already asleep and I didn’t have my phone so I started banging on the door as loudly as possible and screamed. After about 5 minutes of this Levi was crying so hard in the living room (where he and Malachi were hanging out solo) that it woke Jake up. We gave him a long lecture with my hoarse voice on not doing that to the doors and assumed that he would be too traumatized to do it again.

But we assumed wrong. When I saw Levi’s sneaky smile I knew he had done it again and this time he locked himself in with me, leaving Malachi alone in the living room. Jake was at work, but thankfully this time I had my cell phone with me. I called the neighbors but no one was home, so after weighing the options I decided the only viable one was jumping out of the window.

Jake has had to jump out this window before, and it ended up with him rolling down the hill and getting covered in mud. I knew that I didn’t want to do that method, so I surveyed the drop and decided to try a cliff hanger mode.

I locked Levi in the bathroom so he wouldn’t attempt to follow me. Then out the window I went, trying to hang gracefully then drop to the ground. It was anything BUT graceful as I realized I am much heavier and much weaker than I used to be. My muscles were angry with me for asking so much of them (and still are), but I landed on my feet. I went in through the front door and yanked those darn baby locks off the doors on the way to rescue Levi from the bathroom.

The weather was pleasant enough for us to enjoy the pool a few more times!

I have bounced around three thoughts for tonight’s devotional thought, but I keep settling on 2 Timothy 4:3-4.

For the time will come when they will not endure sound doctrine; but wanting to have their ears tickled, they will accumulate for themselves teachers in accordance to their own desires, and will turn away their ears from the truth and will turn aside to myths.

I have many well meaning friends in my life that often remind me about the importance of self-care. They will commonly say things like, “You can’t pour into others from an empty cup” as they encourage me to take time to go do things I enjoy, or pamper myself. Admittedly I have a difficult time putting my wants above my boys and I am grateful I have great friends that desire to see me happy.

The mental picture this phrase provides is a logical one, and one that in theory makes a lot of sense.

I do believe that it is biblical to take care of yourself physically, mentally, and spiritually. No arguments here with that. But I will argue with you on whose job it is to fill the cup.

Here is the truth: it is not our job to fill the cup. I believe with all of my heart that God will fill my cup with the exact amount that is needed to fulfill the tasks He has given me to do. When we start to think that we control the amount in that cup with pedicures or girls nights out, we start to take away the dependence God wants us to have on Him.

That mindset can actually do more damage than good, as we start to mentally ration what things or people we could be wasting our cup on, as we believe we will be the ones that have to do the refilling.

In Philippians 2 we read

Have this attitude in yourselves which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross. 

Did you catch those words?

Christ emptied Himself.

Christ humbled Himself.

Christ became obedient to the point of death.

God will call each of us to do things that will require every last drop of our cup. He will ask us to do things that we have to use our “reserve” on…that bottom layer of the cup we have been saving and pretending is linked to our sanity.

When we walk in obedience and we empty ourselves in humility for others that God directs us to, God will see and honor our sacrifice and gladly refill us for the next task He has for us. I have seen this in our lives time and time again, as raising medically complex kids is a quick cup drainer. But I am so confident that this path God has me on has been hand picked by God…including all the bumps in the road that splash that water right over the edge of my cup.

God will refill our cup so much more full than any measure of “me time”. Part of being a child of God is fully believing that will do just that.

But I also want to make sure that I am being transparent here and share with you that the seasons of the empty cup can be so very difficult. Those times that you have emptied yourself and have nothing left to give can be lonely times- but those are the times that we are reminded to look heavenward, not inward. Dry cup seasons are sometimes there for a purpose, as God is simply telling you to stay still and rest.

Don’t let the fear and discomfort of dry seasons keep you from pouring yourself out for others when God clearly calls you to do so. Like the widow’s oil jar, He will never allow us to deplete without fully intending to replenish.

God bless,

Leah