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

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

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