Doorway Devotions

Every now and then I step back and self reflect on why I am writing this blog. I think if I were to isolate the top reasons why the list would look like this, in no particular order:

  1. To help other medically complex families and those who may share diagnoses and lifestyles.
  2. To help non-medically complex families understand some of the ups and down many of us will never verbalize.
  3. To point people towards Christ through the lives of my children and my own struggles as an ill equipped mother.

There are several other reasons and hidden blessings that could be on that list, but each week when I write I try to focus on these. I try to remove all self glorification or exaggeration from them, as our pride often leads us toward those tendencies. And I try to not use it as a weapon, making people in our circles uncomfortable to be around us for fear of what I may write.

And I thoroughly enjoy writing! It allows me to reset my mind and reflect on our successes and failures throughout the week. I am still in awe that you all come back each week to read about the mundane things in our world, but it is evidence to me that God is still at work within it.

This week I want to share a bit with you all about special needs families and the toll it can take on marriages. Let me preface by saying that Jake and I still have hearts that beat in unison and God has given us such strength to preserve our relationship through even the most difficult circumstances we have encountered.

But oh boy, it is difficult!

I honestly can’t remember the last time Jake and I slept in the same bed. With increasing needs and wonky schedules, trying to sleep in the same room just isn’t an option right now. The boys are going to bed between 1:00-2:00am and Jake has to be up by 5:00 for work.

In an effort to get Malachi to sleep longer than 3 hours I sleep next to him and periodically shift his body throughout the night. Levi also sleeps in the room with Malachi and I in his own bed and wakes up screaming for me several times a night. Not to mention the frequent g-tube mishaps that hit throughout the night with each of them.

We are in a season of life where the life sustaining needs of our children outrank some of the aspects of our marriage, which is a little hard to grapple with. We have to be very intentional in making time for each other, and very gracious when our needs aren’t being met. It is a hidden difficulty many people, like myself, didn’t fully understand until we were tossed into it.

I talked a bit about the weird grieving process that can take place when you have to put some of your dreams for your life to death. Yes, there are many dreams that we are able to put “on hold” but some require being put to death in order to not continually fight bitterness. There are dreams that we grieve over for our children, for our marriage, and for ourselves.

Jake and I have been talking about this lately and discussing the things we always envisioned we would do had our life taken a more normal path. These realistic discussions allow us both to share our hearts and look for ways to bless each other.

This week Jake went on an adventure with his friends for his birthday. Yes, it has been exceptionally difficult to manage here alone without him but I also recognize how much both he and I need these opportunities in our lives. And sometimes those sacrifices are the best love language.

We had a group called Men and Women of Action come out this week and start the process of creating an accessible play area for the boys. In our minds we pictured them simply putting a playset together for us (that we purchased with local grant money) and making it Malachi friendly. But they came out and had bigger and better ideas and got right to work!

It is always extremely humbling accepting help from people, and we have had to reach our hands out often in the last 7 years for things that we just can’t physically do on our own. Each time God has sent blessings our way in the form of willing people. This group has blown us away with their work ethic and desire to help our boys experience some normal in their world.

Levi has been so incredibly excited this week, shouting “Playground!” when he wakes up each morning. Both he and Malachi love to watch them work and listen to the noises they generate.

I can’t wait to share photos with you of the finished product. I told Malachi that he could have some friends over for his birthday in a few weeks to play and he started giggling incessantly.

Side note- can you believe that he will be 8 years old in just under three weeks! It blows my mind to think it has been 8 whole years.

The kids and I have been hunkering down and simply surviving! Levi has been having some big outburst in behavior, like biting Malachi and clawing at his face so it has been a challenging week.

And lots and lots of temper tantrums.

Malachi has had a wonderful week as far as seizures go. At the beginning of the week he had a few days full of several large ones, and one very bad night with some massive ones that scared his sweet tender heart. But since Jake has been gone he has had less than 3 a day, which is truly a gift from God.

I have been closely monitoring his oxygen levels as he is still having random moments of discoloration and more shallow breathing. But it is always short lived and his levels come back up relatively quickly with position changes.

Here is a photo of Jake at the same age as Levi!

Both boys are still riding their horses each week and I am shocked at how well they are each doing. It is the highlight of their week and watching them from the sidelines is so special. So much of this world is hands on for me, so being able to enjoy watching them from afar is special.

I have been personally challenged lately at how well I disciple my own children. We talk about God often in our home, but I started really evaluating how intentional my discipleship has been with them.

We read the Bible stories to them, but as a youth leader I see the result of children who are raised with “knowledge” of the Bible and zero ability to apply it to their lives. We aren’t called to simply know the Word of God, we are also required to live it out.

I want my boys to understand what it means to be the hands and feet of Jesus for their time here on earth.

I foolishly (or lazily maybe) assumed that Levi would be too young to retain much of what I say to him, but a few weeks ago I heard him reciting movie lines before they were said on the movie. It was a wake up call to me that if he had memorized portions of Disney movies then surely he could also start memorizing the Word of God and truths about who Jesus is.

We talk a whole lot about Jesus these days. Malachi always beams when we speak about Jesus and I tell Levi it is because Malachi got to spend some time in heaven when he was born. If you don’t know, Malachi’s heart stopped inside of me and they did 15 minutes of CPR on his 1 pound 12 ounce body before he came to life. We have always believed he spent this time in heaven.

Levi is absolutely awestruck by our Jesus talks and several times throughout the day I will catch him saying “Hi” to someone in the room, even though no one is there (creepy this week with Jake gone by the way). I will ask him who he is talking to and he will respond by telling me it is Jesus, or it is angels. Earlier today he was pretending to talk on the phone and when I asked him who was on the other line he said “Jesus” and went back to chatting.

As much as I work to prepare Malachi’s heart for the day he will meet Jesus, I find myself realizing that I need to prepare Levi’s heart for that loss as well. I know it sounds morbid to talk about Malachi’s death, and we have not been given a specific number for life expectancy. But based on many studies and other kids with similar conditions it is safe to assume that we will outlive Malachi.

I want so desperately for both of my children to know and understand what is awaiting them in heaven. And I also want them to know that our time on earth is meant for bringing glory to God.

We have been tackling lots of service projects this week to help them understand walking like Jesus walked. As we are tackling one of those projects I explain to the boys that we are doing this because it was what Jesus would have done, and how Jesus showed His love to others. Levi is like a sponge when he listens, and cheers like a wild man each time we do a “Jesus project”.

Deuteronomy 6:6-9 And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. You shall write them on the doorposts of your house and on your gates.

This verse has been on my heart for several months, clearly planted there by the Holy Spirit. Discipling our children should be one of our top priorities as Christians. So often people lean on the church to do that job for them, but the Bible is very clear that God conversations should be a norm in the home, not a rarity.

I also understand that those conversations are hard to start having, especially if your children are older and not used to them. So along with this verse pressed on my heart, God also gave me clear directions to put together a devotional book for families. It is very simple so that even a new believer can facilitate one of the devotions. And the conversations are easy enough that a child as young as 6 can participate.

There are 50 pages, and the concept is that you tear out one page a week and tape it on a frequently passed spot in the home. On that page is a question and a memory verse for the week. You have 6 days to think of your answer to the question and attempt to memorize the verse, should you choose to do so. Then on day 7 everyone in the family or group meets and discusses the answer to the question. On the back side is a short Bible study with verses to look up and questions to prompt open discussions.

An example of some of the questions:

What is one thing someone said to you that you will never forget?

What is one adjective that God could say about you that you would be proud to hear?

What earthly thing do you treasure the most and why?

What is something you have had to wait patiently for?

Jake and I have been working on preparing this book for several weeks and it was officially printed this week! Our church will be distributing them throughout the community in an attempt to bring the Word of God into homes, as so many are not able to attend church right now. The responsibility to disciple has been placed back into the hands of parents, and we are finding many feel ill equipped.

If you are local to the Chattanooga, TN area and would like a copy send me a message and we will get it to you. Or if you would like a stack for your church just let us know. They are completely free!

So why bring this up? Through this project I have been reminded that when God calls you to do something He will always open the doors and provide the directions. This project has been no exception as God made this project a fun one instead of an added stress.

I hope that when you feel the prodding of God that you will readily and happily follow His lead. God is simply looking for obedience!

P.S. And another awkward ending to an entry haha. We ended up with one of those nights that I dread, staying up until 5:30 due to some Malachi seizures followed by a tummy ache. I guess I typed the praises from the week a bit too soon! Please pray that today is a decent day.

God bless,

Leah

Love Perseveres

This week we have been fighting some pretty big seizures with Malachi. Any form of discomfort brings on the seizures, and we are still leaning towards them being related to his incoming teeth and the increased secretions that process brings. We have had some pretty wonky nights this week staying up until 4am battling the seizure beast.

On one of his more difficult nights I noticed a bit of discoloration on his upper lip so I grabbed the pulse oximeter to check his oxygen levels. He was dropped down to 91, which is lower than his normal. When we hit 88 we typically take him on in to the hospital. Within the hour we were able to get him back up to 94 with positioning and secretion management, and his color went back to normal. We are keeping a close eye on him and checking him often, but he has been back to baseline this weekend.

And little Levi of course wanted me to check his oxygen levels as well and he was at 98! This is so good for him and means his airway is still nice and wide.

But overall the boys are still very healthy and happy. Before I joined the medical mama club I never fully understood the hidden tasks of that life. Each month we receive shipments of medical supplies…boxes and boxes of necessary things to get them through each month…formulas, feed bags, pule oximeter sensors, medications, adult diapers, syringes…

Organizing them when they arrive is quite the task and some months I am overwhelmed by it. But I am also thankful for it as I recognize it allows children like mine to live happy, healthy lives outside of the hospital setting.

We tackled another g-tube change this week, something that I utterly hate doing as it means I have to inflict a bit of discomfort on my children. Malachi handles it like a champ, and I can swap his out in under 30 seconds. But poor Levi starts crying the minute a new tube box comes out of the drawer. When he contracts his ab muscles while crying it makes it more difficult to get the old tube out and the new one in. Despite the tears, this was the best changeout we have ever had for him!

Malachi’s new switch adapted dice roller got some action this week! We played Candy Land, Trouble, and lots of Rattlesnake Jake. Seeing Malachi come alive with these games is so much fun to watch. He is so engaged and competitive!

Malachi has been struggling a bit lately with feeling included, something we are typically very conscientious about but clearly still don’t have mastered. Little things this week sparked crocodile tears, like me running to the basement to throw in a load of laundry. I always tell him where I am going and what I am doing, but Levi often follows me making Malachi think we are doing something fun without him.

I think it is safe to say that my heart breaks a bit for Malachi each and every day. Inside of that body is a seven year old boy who is mentally so typical. He understands everything around him, including emotional tension and unspoken things. He truly is an amazing kid, something I tell him every night before we go to bed. My heart hurts that he can’t do the things he truly wants to do.

Including him is always a top priority for us, but the larger he gets the harder that is to do. Piggy back rides, dancing in the living room, trips down to the basement to play….all of those things are already getting more difficult for me. I am trying really hard to stay in the present, but my mind keeps drifting towards the future disappointments Malachi will encounter that I can’t prevent.

This week a friend turned 40 so we rented out a local workshop that helps you create your own custom signs. Everyone was able to stay masked and six feet apart making it a great option for a memory. As I looked through the projects to choose from on their website I wanted to stick with the scripture theme we have in our home.

When I saw this one I knew it was the one for me!

1 Corinthians 13 has been a favorite scripture of mind since college days. When Jake and I were married in 2008 our bridesmaids recited the chapter in our wedding ceremony. I have this chapter memorized and recite pieces of it often, but sometimes seeing the words of God can spark something new in your heart. I substitute my name in for the word “love” when I really need to re-focus.

In these workshops, you complete your work of art in about 3 hours and take it home with you. As soon as I carried it in I Jake gladly hung it in it’s chosen spot above the pantry. Ignore the wild three year old on the counter.

I don’t know about you, but when I add something new to the house my eyes are drawn to it often as it is something I am not used to seeing. This sign has been no exception, and each time I glance up at it my eyes are drawn to a different word.

The more I have read that sign, the more I have recognized that my love for others is still a far cry from the love of Christ. There are things on the list that I have mastered, but many others I still have to work on.

As I self reflected on that list I kept eyeing that last string of words: “It (love) always protect, always trusts, always hopes, always perseveres.” The words seemed so familiar to my heart, but I couldn’t quite pinpoint why.

After a few days I finally spotted it. It was the love that immediately developed in my heart for Malachi the night he was born. It wasn’t a love I had to work at, it was a natural love. It was a fierce love for a tiny 1 pound 12 ounce boy I had just met.

As I thought about those early, hard days with Malachi I see how this special love from God fueled that journey. I watched that love burst into action again the night Levi was born. And each year when I think that love can’t grow any bigger I watch in amazement as it strengthens and grows.

I often get genuinely well meaning comments from people saying “I don’t know how you do it”, and the truth is that when God gifted these boys to me, He gifted me with an extraordinary, supernatural love for them that would fight to protect, hope, and persevere alongside of them in each of their unique journeys.

Love is a gift from God.

The love that 1 Corinthians 13 describes is utterly impossible to develop without the presence of Christ in your life. When we talk about Christians being different than the world, this type of unique and unwarranted love for others is what we should all be praying desperately to develop.

It is the love that Christ displayed as He walked this earth, healing the broken and loving those deemed unlovable. It is a love that often goes against human nature. But if we claim to be followers of Christ, shouldn’t we be eager and willing to love others as He does?

My prayer is that one day that the same natural love in my heart that I have for my own children will grow into love for others. That I will start being able to see others the way that God sees them and the adjectives in 1 Corinthians 13 become a natural instinct in my life.

When we choose to look different than the world, we have to find ways to live differently than the world. Love seems like a great place to start.

I apologize in advance for any choppiness in my writings tonight. It is 1:30am and Malachi and Levi are still wild and active. Trying to hold my train of thought is not working so well. I am off to wrangle these kids!

Much love,

Leah

Fixing Our Eyes

This week Jake headed north to spend some quality time with family before he returns to work tomorrow. We had discussed us all making the trip, but the idea of traveling with the boys while trying to keep them germ free seemed like a stretch. And the daily routines are getting more complicated to achieve anywhere else but here at home base.

Single momma mode can get interesting but overall the week went really well. The role of caregiver is mentally, physically, and emotionally challenging- even with Jake home to give me breaks here and there. We are still very much living in a survival mode mentality, allowing the boys and their needs to dictate our days and schedules. We have routines that can’t be flexible, like medications and feeding schedules, and there is something medical required for one or both of the boys every 2.5 hours during the daytime hours. There isn’t an opportunity to mentally zone out.

Nighttime is still an olympic event, dashing from one boy to the other at least 6 times a night for beeping machines, seizures, and vomiting.

Levi feeding the dinosaur shredded cheese

For example, last night Malachi had 6 big seizures and projectile vomited all over the bed and carpet. He stayed up until a little before 4am, crying and screaming with discomfort. I suspect his incoming teeth have something to do with this. These types of unpredictable nights happen often, and the boys seem to have a unqiue way of alternating who is going to be a wild man each night. I guess I am thankful for that…if both of them have a bad night at the same time we are in for doozy!

Levi’s new hand-me-down ride

I tried to wear the boys out this week with lots of trips in the car and spending some time with local family. We even made a trip down to Atlanta to visit with my brother and his family. Just as a precaution, I went and had a rapid covid test done to make sure we weren’t somehow carrying something to them.

Jake and I are both “dog people”. We have always loved having big dogs, but with the chaos of each of the boy’s births we had to prioritize kids over animals and rely on family members to help with the dogs during our hospital stays. Our sweet Gunner had a heart attack when Malachi was 3 years old, and our old boy Boomer had a heart attack just a few weeks after we returned home from the hospital with Levi in 2018.

A carefree Jake and Leah from 2011; seems like a lifetime ago!

Malachi loved Boomer and Gunner so much, and we have always talked about getting another dog. But then reality sets in and with the unpredictability that our life brings, we find ourselves questioning if it is responsible to bring a dog into the mix. We still don’t have a grasp on taking care of our children’s needs, let alone adding the needs of a four legged friend.

But then there is sweet Malachi, clearly a dog loving boy, who makes us rethink it all. Anytime a dog comes near, Malachi lights up with such joy. We sneak the neighbor dogs in every now and then when they come into our yard just to see him giggle. My brother has a big dog and watching Malachi play with him made my heart so happy.

I am still not convinced that right now is the best time to add in the chaos, but maybe one day in the future we can explore the idea again.

We also spent the week working on potty training, which means I spent the week mopping the floors with sanitizing solution!

Let me take just a quick second to blow your minds with how much Levi looks like Jake. So wild!

Jake came home late Friday and brought a few presents for the boys from our family up north. Both of the boys were thrilled to have their dad home and having him bring special surprises made it that much more special.

Malachi got two new switch adapted toys and he is super excited about both of them. Finding toys for Malachi is quite the challenge, but these he can control with his green switch. The tube one has a racecar inside, and when Malachi presses his green switch the car races until he lets go. He has played with this one for hours already!

He also got this switch adapted squirt gun that shoots water every time Malachi hits his green switch!

And little Levi got a really cool toy I wanted to share with you all! The newest Paw Patrol character is in a wheelchair and Levi got his own handicap accessible truck to play with. So sweet.

Malachi got a fun new game called “Rattlesnake Jake” that we have been saving for when Jake returned from his trip. We got to play a few rounds this afternoon and I can tell you this one is a winner. You have to sneak your hand in and grab a gold nugget and each time you do the rattlesnake shakes its tail. You take turns doing this until the snake lunges at someone and they are the loser of the game. The anticipation sets Malachi into giggles, and playing it has been so good from an occupational therapy mindset because he has to open his hands to grab a piece of gold (with help of course). We played at least 12 round and he was still signing for more.

Last week I was struggling with the unknowns of our life. And this week I am struggling with the knowns. Isn’t it wild how quickly the devil can redirect his attacks on our hearts?

The unknowns of life with two medically complex kids keep my imagination running with what ifs. I start to mentally prepare for scenarios that may never happen in an effort to prepare my heart for what may be on the horizon. It isn’t a healthy habit, something I am very aware of.

But this week I got stuck on the knowns. Yes, there are so many levels of unpredictability. But there are also so so so many levels of predictable things in our life that almost feel like a heavy blanket we will always need to carry with us. These are the things that are necessary for our kids to survive, and things we can never ignore. There will always be medication, surgeries, appointments, therapies, sleeping difficulties, seizures, diaper changes…this will always be a complicated life.

Often parents can get through the chaos of the early years and life mellows out a bit. As children change and grow older they develop independence and don’t require their parents as much for menial tasks. But that reprieve will never come for us. There will never be a time when traveling with the boys is “easier” or less complicated. In fact, we are finding it to be quite the opposite as Malachi grows, as most places aren’t equipped for us to comfortably care for his needs.

I get sad when I dwell in the knowns. It is an odd sadness, because I am extremely grateful to be trusted by God for the role He has put me in. But there is a level of mourning as I put to death many dreams, hobbies, and expectations. These are things I have always clung do with a “maybe one day” tacked in the front. But I am realizing that clinging to those unrealistic expectations is doing me more damage than good and has potential to plant seeds of bitterness in my heart.

I am working this week to embrace the calling God has put on my life. There are so many rich blessings within it that I can often overlook when I am not in the mood to find them.

This calling doesn’t even remotely resemble the one I had envisioned I would have, so I feel like embracing it is a way to honor God and affirm his role of lordship in my life.

Hebrews 12:1-3 “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.”

I feel like I am at a point in the race when I look around and start to wonder how in the world I got here. I have forgotten the work God did early on before the race to prepare me for it, and I have forgotten the zeal that I had when that starting pistol fired into the air the night Malachi was born.

When I started running I didn’t give a thought to the finish line, or lack of one. And now that we are several miles in I find that I am not conditioned for this type of task, and that I am don’t always enjoy the hard work the running takes. I keep looking around for a place to step to the side and rest, but this race doesn’t work like that…others lives depend on my ability to keep running.

And truthfully the idea of a finish line, or a break in this hard life will likely be surrounded by imaginable grief in the loss of my child. I dread the finish line.

What started as an adventure now feels like a chore. Is there something in your life that you can relate that to?

But this verse gives us a tip that can help with our weariness. Instead of looking for the finish line, fix your eyes on Christ. Instead of looking for side paths and shortcuts, focus your eyes on Him and recognize that each step you are taking is one that He ordained and designed specifically for you.

When we focus our eyes on Christ we can do anything He calls us to do. Peter even walked on water when Jesus called him to. It was when he started to look around that fear creeped in and challenged his faith.

Admittedly I have been looking at the wind this week instead of God.

But a new week is here, and another opportunity to keep my eyes on Him!

Much love,

Leah

Christmas Shenanigans

I am about to overload you with photos from our fun week! We have been trying our very best to hide out from the covid swirling in our community right now, so aside from a quick horse therapy session we have not really left the house.

Both of the boys were exceptionally excited that Jake was able to come watch them at therapy. They both had great sessions with no tears. Levi also got to open one of his Christmas presents early after mommy accidentally ran over his old bike helmet last week. Ooops!! And for anyone wondering, Malachi has microcephaly and an odd head shape; he also has a brain shunt that sits behind his left ear area under the scalp and helmets hit directly on the device so he is unable to wear one.

We had a few decent weather days and spent hours on the trampoline.

And on Christmas Eve and Christmas day we ended up with some snow! Levi was fascinated with the big flakes falling from the sky- something that is rare in Tennessee.

On Christmas day we bundled the kids up in the wagon and went outside for a walk in our winter wonderland. It was incredibly bright with all the snow and sunshine so we tried Jake’s ski goggles on Malachi to see if that would keep him more comfortable visually. He was intrigued for about 4 minutes then signed for us to take them off.

As far as Christmas goes, this year was a lot of fun for both of the kids. We baked a giant sugar cookie cake for the kids to decorate and both of them got to help mix the ingredients and pour them into the bowls.

On Christmas Eve I put the presents under the tree and Levi immediately gravitated towards them with curiosity. Malachi’s ears perked right up at the sound of the crinkling paper and we talked about how they had to sleep until the sun came up and then they would be able to open them. They were both wild with excitement that night, staying up until well after 2am and first thing in the morning Levi ran to the tree and grabbed a gift to tear open!

We held true to our four gift tradition (one thing you want, one thing you need, one thing you wear, and one thing you read) and all of the gifts were a big hit! Malachi’s “need” gift didn’t make it in time so we wrapped up a switch adapted gift a local organization sent him so he wouldn’t feel like he got less than Levi.

Levi’s big presents were a new tool bench and a balance bike.

Malachi’s big present was his dinosaur, something we searched long and hard for and tracked down on a resale site a few months ago. We were so excited about this one, and had been “teasing” Malachi about his giant gift in the basement for several weeks. He was giddy when it was time to open it and he shut his eyes really hard. I could tell he was getting a little overwhelmed as he unwrapped the dino, clearly getting some sensory overload with all the noises and actions in addition to the anticipation.

When the dinosaur started roaring at him it was just too much for his littler brain and set him into a seizure. It was a pretty big one so we had to clean him up and calm him down for several hours as he tried to get back to baseline. Later that afternoon we re-introduced him to his new dino friend and now they are best buds. Here is a video for you:

From about 3:00 on Malachi was a giggling mess, clearly very excited about it being Christmas day. We tried to call family and Facetime but with the Nashville explosion just a few hours from us, our cell phones were not really working. In fact, here we are three days later and we still don’t have our service back. We can send a text every now and then, and sometimes make a quick call but for the most part we are unplugged.

Each year Jake and I find ourselves re-evaluating what Christmas will look like for our family. We want so desperately to keep it about Jesus so we have been doing “secret missions” all week with the boys, finding ways to help others secretly in our community as Christ would have done. Levi in particular has been very excited about these missions and will sit in the back seat making a “Shhhhhh” sound when we pull up to someone’s house to leave a surprise.

We have been talking a whole lot about Jesus and how much He loves others. And of course, we have been telling the Christmas story and why Jesus’ birth is such a big deal to us. I videoed Malachi and Levi helping tell the Christmas story to share with you:

He still gets a little muddy on the details, sometimes telling me that the name of the baby was “Grandma” but we are getting there. I also asked him what noise the shepherd’s sheep made and he made a giant tooting noise with his mouth so I guess we need to work on our animal sounds too.

Malachi woke up with his front teeth about to pop through, which he has been very excited about. He has been listening to the Alvin and the Chipmunks song about getting his two front teeth for Christmas. We suspect that is the culprit for the seizure increases we have seen this week so we are hoping they will break through the gum soon. Since he had to have the baby teeth surgically removed it takes a bit longer for them to make it to the surface since they don’t have a “channel” already established for them to pass through.

Each morning we give him a status report of how much he grew overnight while he was sleeping and how much his teeth have progressed.

This week I have been reading the different accounts of the Christmas story in the Bible and noting all of the similarities and differences. Yes, it is basically the same story, but each author has their own flare or added minute details that makes it slightly different than the others.

As I read through Matthew this week I started focusing on the parts of the story I don’t know well. And as I looked closer at those scriptures God clearly had a word tucked in there for my heart.

Over and over again I watched the providence of God shine through in the early life of Jesus.

When the wise men brought gifts to Jesus it says in Matthew 2:12 “And having been warned in a dream not to go back to Herod, they returned to their country by another route.”

Then the very next verse says “When they had gone, an angel of the Lord appeared to Joseph in a dream. ‘Get up,’ he said, ‘take the child and his mother and escape to Egypt. Stay there until I tell you, for Herod is going to search for the child to kill him.’ “

Again a few verse later another angel visits Joseph in Egypt and tells him that it is safe to go to Israel, and after another warning in a dream he ends up in Galilee.

Time and time again the devil tries to attack the plan of God through Jesus and each time God’s providence succeeds. I wonder about the impact these moments had on the faith of Mary and Joseph.

But the biggest thing that has distracted me this week is the timeline of God’s plan in the life of Jesus. I have been calling it the dot dot dot (think of it as a …)

God clearly had a huge plan and purpose when He sent Christ to earth. And we get a glimpse at the birth, a glimpse at his childhood, and then there is a dot dot dot. There is a gap until Jesus turns 30 years old and his ministry actually begins.

Think about that. Even the Son of God waited nearly 30 years for the climax of God’s plan for his life to unfold.

Psalm 139:16 “Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.”

Jeremiah 1:5 “Before I formed you in the womb I knew you, before you were born I set you apartl I appointed you as a prophet to the nations.”

Ephesians 2:10 “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

As I read the accounts of God’s providence in the early life of Jesus, and reflect on these verses my heart is overwhelmed with the peace of God. There is absolutely nothing that we can do to interrupt the plan that God has on our lives. And while this sounds like an inspirational quote for a religious calendar, when you have a child like Malachi those words mean so much more.

As many of you know I am a dweller. I spend way too much time overthinking things and processing what our awful and wonderful things our future will hold with Malachi. I had a big emotional break on Christmas Eve and sobbed most of the night. I had driven through a McDonalds drive through for some drinks earlier in the day and glanced down at the donation box bolted into the wall. As I looked at that picture I had a moment of recollection of doing the same thing when we were driving through a McDonalds in Cincinnati on Christmas Eve a few years ago with Levi in the NICU.

When I closed my eyes that night the photo from the box struck my heart and filled me with so many flashbacks and emotions. I cried out to God in my tears and verbalized to Him that I don’t think my family can take much more right now. My heart is so bruised, and my boys have been through so much. The thought that there may be harder things to come overwhelms me. I can picture our worst, scariest days, yet one day there will likely be one that tops it all. I am already bracing for that impact, as I am not emotionally strong enough to handle any surprises right now.

But just as God protected Christ and made certain that His plans in Jesus’ life would be fulfilled, I can find comfort in knowing that He will do the same for my Malachi.

Malachi’s timeline rests in the hands of God. And he won’t be called heavenward until God has fulfilled all of the things He chooses to do through my sweet boy. And the same is true for each of us. There is nothing that man can do to interrupt the will of God.

When I process those thoughts it allows me to breathe a big, deep breath and rest in God’s peace. I hope that whatever you may be overthinking and dwelling on tonight will be challenged by those verses too!

The providence of God is such a beautiful gift.

Much love,

Leah

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