This week was a special week for so many reasons. Last Sunday marked the day Malachi was “supposed” to be born…his due date was May 21st, 2013 and as most of you know, Malachi came on February 4th, 2013.

But yesterday marked a very special day- May 27th was the day we brought our little miracle home from the NICU.

It was the first time we were alone with our four month old son, and what a terrifying experience it was! I remember not wanting to fall asleep, for fear that he might pass away. I stayed up for hours and hours just watching him sleep. As exhaustion began to win the battle over my mind I laid on the couch next to his bed and prayed that God and His angels would protect Malachi.

We were a frenzy of activity in those days. Most weeks we had around 16 medical appointments, and 24 doses of medications a day. We were running on adrenaline, knowing our sole purpose in life was to keep Malachi alive.

Life has changed so much over the last four years. Malachi has changed and has developed into such a wonderful boy. His personality is one of a kind, and just to watch him interact with the world is exhilarating and fun.

His joy is contagious and when he laughs you can’t help but laugh with him. This week we have been fascinated by grocery bags and paper tearing.

What a blessed family we are to have been given such a precious child.

Malachi has had a very busy week! We embarked on yet another adventure as we did some house-sitting/dog-sitting for my brother while he was on vacation. They live “in town”, which is about 30 minutes from where we live. I packed up a few bags with essentials and Malachi and I stayed overnight there for the last week. Jake was still finishing up his school year so he would come around 4:30pm until bedtime then head home for the night.

Anytime we are out of our environment it can be a challenge, but this one went relatively easy. This is also the brother who is keeping our dog Boomer for us as we are in a rental that will not allow pets. Malachi loves his dog so getting to wake up each morning to Boomer was a real treat. He would giggle and Boomer would give him kisses alllll over his face.

Malachi got a much needed haircut this week from our church friend. He also got to go swimming for the first time this summer! He was a chatter box the whole time in the water and lasted nearly an hour and half before he was ready to get out. And yes, he took a nice long nap that afternoon haha.

Unfortunately, Malachi started feeling sick this evening. His temperature just rose to 101 and he vomited for the first time in nearly 5 months. He is awfully pitiful right now so he will be spending the night in the bed with mom and dad so we can keep a close eye on him.

If you are new to the blog, sick Malachi is a challenge. His seizures increase and he goes into coughing fits that last several minutes, causing his whole body to wretch and also causing him to gag then vomit. It is an all hands on deck situation as we try our best to keep him comfortable and hydrated, all while monitoring him closely for pneumonia.

It is absolutely alarming how many children like Malachi pass away from a generic illness like a cold. Their bodies just have a hard time coping with sickness and things can spiral quickly.

Malachi’s personality continues to develop and he has started doing such mischievous things. These things are so “normal” for other kids his age, so it is fun to watch him try to be bad. For example, this week he indicated that he wanted to color while we were having lunch at a restaurant. We gave him the option of two colored crayons, and he chose his favorite (he is very opinionated these days and LOVES when he gets to make a decision). I put the crayon in his hand and he spent the next two minutes trying to figure out how to throw it onto the floor…grinning the whole time.

Let’s also pause for a moment and talk about how BIG he has gotten! Look at those long legs!

One of my newest triggers for worries has been Malachi’s spine. We will go to Vanderbilt in just a few weeks and I will be able to talk with the orthopedic doctor about it, but until then I am a bundle of nerves. Because Malachi is immobile he is at a very high risk for developing scoliosis and other back issues. As the spine worsens on CP kids, it can put pressure on vital organs like lungs, making it hard to breath. Spine surgeries are unfortunately very common with severely affected children like Malachi.

Not bad yet, but has been consuming my mind with worry. This is specific prayer request to add to the list. If God can make crooked paths straight I know he can do the same with Malachi’s spine!

And one more silly video for you. We have been working on language with Malachi, and in this video we were focusing on the word “Run”. He was working so hard!

The last Sunday of every month I pull the children (grades 1st-5th) out of the regular service and talk to them about a tough concept from the Bible. My goal each time I do this is to teach them something they haven’t heard before. As I spent time preparing for the lesson this month I felt led to talk to them about fearing the Lord.

Malachi 1:14b says ” ‘For I am a great king,’ says the Lord Almighty, ‘and my name is to be feared among the nations.’ ”

We talked about how the original scriptures were written in a different language and when we translated them into English some of the words didn’t translate as well as they could have. In Hebrew there are two words for fear: 1) pachad- which means fear, dread, and terror and 2) yare- which means honored, respected, revered.

I explained to them that when God says his name is to be feared, it is in the context of yare. We are to respect the name of God, regardless of the things that happen in life.

As I prepped the lesson I tried to think of biblical examples of someone that feared God in this way, and one of the main ones that came to mind was Job.

As I gave a brief summary on Job’s story I watched as the kids eyes got wider and wider. They clearly had never heard the story before, and my did they have questions. Hands went up as they began to ask things like “Why did God allow all of his children to die if he was so righteous?”

Our lesson very quickly took a different route as we talked about trials in our lives and how to view them.

We talked about trying to live in such a way that we catch the eye of God, just as Job did.

I had the opportunity to explain to them that even though we have been given a trial- the challenge of raising a medically fragile, special needs child- we choose to focus on the fact that God had confidence that Jake and I would not only handle this trial, but do so with praises to God rolling off our lips.

I hope that like Job, I have the strength to continue to honor and trust God, regardless of the trials that He will continue to allow in our lives. I pray that the Carroll family would live in such a way that our names roll off of the mouth of God frequently in the heavenly realms. I pray that fearing the Lord stays a top priority in our daily walk with Him.

If you haven’t read the book of Job, make that a goal this week. The book will no doubt challenge you!

Please continue to pray for our family. There are so many things in our lives right now that require prayer. Jake’s dad has been diagnosed with lymphoma and has started a rigorous chemotherapy schedule, so there will be several more Ohio trips in our near future as we try to help carry that burden alongside of him.

Thank you for taking the time to check in and join us in praying for miracles for Malachi.

Love,

Jake, Leah, and Malachi

 

Just for fun, let’s start out with a silly Malachi video…

Malachi and mommy spent the majority of the week in Ohio and finally made it back to Tennessee late Thursday evening. While Malachi enjoyed the adventure, he definitely had a wave of homesickness hit on Wednesday. It was actually pretty heartwarming and sad at the same time…

Malachi does not sleep well, and he very rarely naps. It just so happened on Wednesday afternoon that he slipped off into a deep sleep. He slept for nearly 45 minutes! His cousins (whom he dearly loves) walked in and he woke up to their happy little voices and was so excited. He laughed and giggled as they ran around him but after a few minutes he looked very solemn and softly said: “Dad?” Of course, Jake was still in Tennessee and it had been three days since he had seen his dad.

His sadness turned into a full fledged melt down after a few minutes. Big crocodile tears ran down his face and he just continued to yell “Daddddd, Dadddddyyyy” over and over again. I called Jake on speakerphone to see if hearing his voice would help, but he was inconsolable.

It took me a good bit of time to get him calmed down. I am guessing maybe when his cousins walked in, he just assumed the whole family was coming? I am not so sure, but either way it was one of the sweetest and saddest things to see. Malachi loves his dad so much.

As we drove home Thursday I kept telling Malachi that we were headed to see his dad. His anticipation was so exciting, and every time we got out along the drive he would yell for his daddy.

When we finally did arrive in the driveway, Jake got him out of his car seat and Malachi gave him the tightest squeeze he could muster. They stayed up together until almost midnight, and then Malachi got up again at 3am to make sure dad was still there.

We came home to some pretty awesome notes from some new and old friends! So much kindness has been extended to our family in the last several weeks. We are blessed beyond what we could ever imagine.

Overall, the week was a great one and Malachi handled it like a champ. It did, however, test my patience in many ways. Malachi is a 24 hour kid. You can never take your eyes off of him for medical reasons and having those small breaks from Jake during a normal day are vital to my sanity.

Malachi can run on about 5-6 hours of pieced together sleep. Mommy cannot. So when daddy isn’t there to take shifts, Elmo and the iPad are crucial. This week I tried letting Malachi listen to his cartoons and get a few extra minutes of sleep, but as you can see in this video that wasn’t about to happen 🙂

The Elmo video also had another side effect that I didn’t think of…it attracted all of the other young children in the house! Before I knew it I had been overtaken by toddlers and sleep was no more. This is a video of Malachi and my half-brother Kaliber. He and Malachi are good buddies, as you can see in the video.

As those moments creeped up throughout our week I found myself thinking about Paul and the thorn in his side. Now let me stop right here and make sure you understand…I would NEVER consider Malachi a thorn in my side! The reference is to my lack of patience with Malachi, NOT Malachi himself.

Patience is something that I never struggled with prior to having Malachi. But it is now one of the most crucial elements of my day, and I find myself running on an empty tank more than I would like.

In 2 Corinthians 12, Paul is telling us about this thorn in his flesh. He never identifies it, but lots of people has speculated about the different things it could be. He tells us that he asked God three times to remove it, and what was God’s reply?

“My grace is sufficient for you, for my power is made perfect in weakness.”

So this week in those too frequent moments of weakness…when my patience disappears, or my anger flares…I have to remember that those moments of weakness help remind me of my necessity for Christ. It is in those moments that I find myself uttering prayers and asking God to strengthen me with His power.

I cannot imagine living this life and going through these challenges without knowing Christ. Our journey is fueled by hope and faith that God’s plan for Malachi is SO BIG and we have only been able to see a glimpse of the things He has in store for him.

So this week, if you find that thorn in your flesh…that thing that you hate but cannot fix yourself, I want to encourage you to take it to God. Allow His power to be great in your weakness.

We are on another adventure this week, but now that we have so many followers from all over the world, I am being a little more cautious about giving details until after the fact. We have had just enough “over friendly” messages to make me hesitate on posting too many details!

On that note, Malachi’s story has continued to spread this week! We will be sitting down with some people at corporate Chick-Fil-A in a about a week and half for a video interview with us and the Chick-Fil-A mom. I will be sure to link the video when it gets posted. It is still amazing how such a simple act of kindness has touched so many hearts.

Malachi was even on the 700 Club this week! Here is a snapshot of his TV debut taken by a friend:

Please pray for Malachi this week as we get back into our routine of therapies and appointments. Please also pray for our family member who needs a healing touch, and for some unspoken needs.

And one final shoutout to the sweet couple at the Kentucky Cracker Barrel that held Malachi while I quickly ate my dinner! Traveling with him alone was a challenge, but it was much easier with kind strangers there to help.

We love you all!

Jake, Leah, and Malachi

 

Today is Mother’s Day, a special day that I always seem to have such a hard time with! Truth be told, most days I feel like I wear so many hats, and the “mother” hat doesn’t strike me as the most frequent one that I have to put on…

Bodyguard       Malachi is still a medically fragile child. He doesn’t have the muscle strength needed to get out of dangerous situations, and tends to put himself in those dangerous situations with his frequent seizures (we are down to 3-4 a day). Because of this Malachi must be watched 24 hours a day 7 days a week. Even when he is sleeping we keep a camera monitor zoomed in on his face and body to watch for seizure activity.

Fecal Matter Detective    Malachi’s brain is also still his own worst enemy as it doesn’t communicate with the many working parts of his body. While there are obvious ones like his body tone and head control issues, there are also ones you may not think about, like his intestines. His brain is not communicating well with his gut and so it doesn’t accurately alert him when he needs to empty his bowels. Because of this, we have to highly monitor his bowel movements and assist frequently (yup…it is as gross as it sounds haha). Constipation leads to even more seizures so we can’t allow that to happen.

Nurse       Malachi is on a strict medication schedule throughout the day which we have whittled down to just six doses a day; at one point we were at 32 so we are thrilled! We are also on guard for aspiration when he eats and making sure that we have rescue medication on hand in case of a severe epileptic episode.

Teacher     Malachi is a very smart little boy, but does require repetitive teaching and an insane amount of patience. His response time to commands has improved by leaps and bounds over the last few months. This progress depends largely on how much time I am able to work with him on a new concept. So truthfully this is one of the most overwhelming roles I find myself in because I never feel like I am teaching enough.

Therapist    Yes, Malachi is involved in several therapies throughout the week, but those activities that he does there are meant to be repeated daily at home. If we are being completely honest here I will admit that I am not good at this one. There never seems to be enough time in the day to accomplish all that needs to be done, and when I see his tone worsen it sends guilt pangs through me, wondering if I could have prevented this by stretching him more.

And then there is the role of Mom

While I do not get to simply be mom much of the time, there are so many glimpses throughout our day where I think “This is how it is supposed to be.” Those moments where I get to relax and smile about something silly Malachi did bring me so much joy and happiness. Unfortunately all the other roles tend to take over in those moment, wondering if that yell of joy I heard in the car was truly happiness or the end of another seizure that I didn’t see.

Last night I crawled into bed with Malachi (not our typical routine, but more on that in a minute). He was sleeping so soundly and his little chubby hand was just begging to be held. I held that little hand and watched him peacefully sleep and I just started uncontrollably crying tears of joy.

This is how it is supposed to be. A day full of these little moments that imprint themselves onto your heart. These stress free and wonderful snapshots of a boy who is moving mountains but still needs those moments of rest.

As I looked at Malachi I was tempted in my heart to go there….to go to the dark pity side of special needs parenting. Let me tell you, it is a daily field trip that begs to be taken. It is a daily struggle to push those thoughts out of my mind.

So I took a mind-clearing breath and my pity turned into pride. This is MY boy. Challenges and all. And whether he means to or not, he is changing my world…our world…for the better with every challenge he overcomes.

What an honor it is to be Malachi’s mother. Every child is special, and it would be ignorant of me to think my child is more important or special than yours. I hope that each of you mothers can feel what an honor it is to be given such wonderful children.

Life has gotten a little chaotic for our little trio this week. We found out last week about some health needs of a family member that required us traveling to Ohio. Jake’s schedule wouldn’t allow him leaving right away, but Malachi and I were able to move some appointments around and leave on Thursday morning. I have attempted trips to Vanderbilt alone with Malachi but those were 3 hours there and 3 hours home. Ohio is a 6 hour drive each way and Malachi has a history of not enjoying the trip (and being vocal about it).

Jake was able to join us for the weekend but had to return earlier this afternoon. “Single momming” it with Malachi is a challenge, and the bigger he gets the more difficult it becomes. My father very graciously gave up his master bedroom on the first floor so I could avoid going up and down the stairs with my 40 pound little chunky monkey. Malachi is thoroughly enjoying getting to be in the bed with mommy each night and loves wiggling over to be face to face with me. Sweet little boy.

I can’t even begin to describe to you how much has happened over the past week in regards to our Facebook post. What was meant as a simple thank you to a mom I didn’t know has managed to pique the interest of thousands of people all over the world. If you want to see what I am talking about take a second and google “chick fil a mom special needs”. Unbelievable.

Our story was talked about on several radio stations throughout the country, including CNN radio. Articles about our Chick-Fil-A encounter were posted on the people.com website, Fox news website, ABC affiliates, and literally hundreds of other websites. I started getting thousands (not exaggerating) personal messages from people all over the world. We were contacted and/or interviewed via email by over 25 news reporters…United Kingdom, Argentina, Australia, Belgium, the Netherlands, and my personal favorite…ISRAEL. Yes, our story made the news in Israel.

Now let’s have a moment of honesty here. The post wasn’t THAT good. There is nothing in that post that should have made it go viral. It took me two minutes to type and post. So what in the world is happening?

My only conclusion is that God is working in some pretty mysterious ways.

If you are new to the blog you need to know that I am a Christian. I believe with all of my soul that God is very real and is at work in my life.

When Malachi was born I remember praying to God one night, begging that He spare Malachi’s life. I remember saying to God: “If you allow Him to live, I will share his story with anyone who will listen and tell them about the great things you have done in his life.” Our prayer for Malachi is that God will use him to bring others into a closer relationship with God.

As I read my viral Facebook post last week I was so disappointed in myself. I try to point to God in almost every Malachi post I write on Facebook- because God is the only one who should get the glory for the great things happening in Malachi’s life. And the one time I didn’t mention God it spread like wild fire.

As I prayed about this and expressed this to God I suddenly realized that maybe God was using this story to plant seeds…seeds that would not have been gladly distributed by the media had it mentioned Christ.

This feeling was affirmed when I read the Fox news article. Guess what source it cited and linked to the article? THIS BLOG.

One of my prayers for this blog is that others will be encouraged in their faith through Malachi’s story. In just three days the blog had nearly 15,000 hits. And if just one person read or saw something that pricked their spirit then praise be to God.

So as I have processed this week I am reminded of this scripture from Isaiah 55:8-9:

My oh my what an exciting week we have had. First let’s start with some medical updates…Malachi somehow managed to avoid my sickness! This in of itself is a big deal as his immune system is still so poor.

Malachi had 9 appointments this week so we were on the go nearly every day. Tuesday was our busiest day as we headed to the hospital to meet with his neurologist/epileptologist for a routine checkup. Malachi’s seizures lately have been down to only two a day, and those are relatively small! We are thrilled with how stable he has been!

While the appointment part went well, my mood had soured as we had been forgotten in the waiting room yet again. It takes a lot to offend me, but this gets me every time! By the time we were taken back to see the doctor I realized that there was no way we were going to make our next appointment across town. We have to plan our day hour by hour to work around medications, feeds, and appointment times. One snafu in the plans sends our whole day out of whack!

I loaded him into the car, hopeful that maybe we could avoid being more than 30 minutes late. As I sped across town I looked in my rear view mirror to see Malachi licking his car seat. Yes, you read that right. And as I did the math in my head I realized that due to the delay he was already an hour past his mealtime. I took a deep breath and decided that feeding him was priority number one.

While we are working very hard to get Malachi on table foods, his primary nutrition is still smoothies in a bottle. Feeding him is still very much an a rigorous process that requires a semi-comfy chair and environment. If it is nice out, we find a Cracker Barrel and feed him on the front porch. Unfortunately the day was a little chilly so we settled for the first decent fast food place we could find…Chick-Fil-A.

As a special needs mom, you desperately cling to places that help make your outing a bit easier. Publix grocery store pushes your cart out for you and loads the groceries into your car! Places like Chick-Fil-A will carry my tray to my table for me. When you have two hands on a wheelchair, this is exceptional. As we found a quiet corner to settle into I experienced the same thing that happens every time we enter someplace new…the staring. But this time was a little different as it was accompanied by the voice of a young boy.

This week I wrote a Facebook post about it, and I think it will best summarize the encounter:

To the mom of three at Chick-Fil-A: I sensed your panic when your five year old son pointed at my son in his wheelchair and shouted “Mom look at THAT boy!” You leaned forward and quietly told him and his three year old brother that we don’t say things like that and they shouldn’t point or stare. But as in most cases, these suggestions are futile with young, curious minds and they continued to stare and loudly ask questions about my son’s differences. When you realized your whispers weren’t working I saw the panic disappear and you took a deep breath and took a step of courage. You brought your boys over to Malachi and said “I bet he would like to know your names!”. As they said their names my little Malachi started grinning from ear to ear and jabbering back to them. The joy on his face brought tears to my eyes- he loves kids his age but so many are fearful to come and speak to him. Your boys continued to ask questions about his foot braces, his wheelchair, why his legs don’t work, why he holds his mouth open like that. You took the time to educate your sons in that moment and help them understand that different is okay. Different is not something to fear. And that it was okay to ask questions! Thank you for giving my son a chance to meet your kids. Thank you for being the type of mom who educates your children instead of frantically trying to silence them. Special needs moms have to develop tough skin- we get used to stares, comments, and whispers. Please know it takes a lot to offend us, particularly when the comments are coming from young children. Give your kids the same grace we give them and use the opportunity to teach them about differences. So Chick-Fil-A mom, thank you for raising your children to embrace children like Malachi. And thank you for giving my son something to smile about.

These sweet boys walked right up to Malachi and looked at him as they said their names. This is such a rare thing- so many times when people come to talk to Malachi they bypass him and talk to me, assuming that he won’t understand them. Malachi’s little face lit up with joy as they spoke, and I felt my heart warm. I didn’t get the mother’s name, and to be completely honest I didn’t even get a good look at her face as I was doing everything I could to keep the tears in my eyes from falling.

The conversation was as cute as could be. The boys told Malachi how old they were and seemed to elated that he was in between their ages! They asked several questions about his legs and his fancy wheels, which I did my best to answer. It really was a touching few minutes and Malachi continued to listen to them talk from a few feet away for the remainder of the meal. He was captivated by his new buddies.

The mom was one of the most caring individuals I have ever encountered. She had her hands full with three small children 5 and under, yet she came by to ask if I needed help with anything, or if she could get anything for me. Her kindness was too much for my heart and my emotions almost tipped me over the edge into a sobbing mess.

We finished our meals and headed out the door. I continued to ponder the situation and came home and told Jake about what happened. Thursday morning I was thinking back on the encounter, and wishing that I had had the words to thank this mother in person and tell her how much I admired the way she handled things.

On a whim, I opened Facebook and typed up my post. I never dreamed it would reach her, but thought that I could express my feelings to my Facebook friends to encourage them to do the same when they encounter children like Malachi. Never in my wildest dreams did I imagine it would be received so well by so many people around the world.

We continued on with our day and as I checked Facebook later I noticed that several of my friends had asked if they could “share” or put the post on their wall.

As of this post it has been “liked” almost 180,000 times and shared to over 50,000 walls. The post has been talked about on the radio, submitted to the Ellen show, picked up by a New York group called “Love What Matters”, and we have received thousands of personal messages.

My first reaction was panic! Jake and I are not spotlight people. We don’t crave to be famous or known. We just want to live our simple life with our sweet boy. And now I was being messaged by thousands of strangers.

And while I would love to tell you that everyone’s reaction was positive, there are always a few bad apples in the bunch. Luckily I have the ability to delete negative comments, and did so several times this weekend.

But as I read through some of these messages my heart was touched. There were so many other special needs moms who explained how they needed to hear this story. There were women writing explaining how reading through Malachi’s stories on Facebook had brought them closer to God. There were NICU nurse practitioners and doctors sharing with me that seeing Malachi and his story gave them so much perspective that they hadn’t considered before. There were moms in hospitals with their recently diagnosed children telling me that Malachi’s story was giving them hope for their children’s future.

My heart began to burst with each and every positive message. And I am in complete awe at the way God has used Malachi to teach a lesson about kindness.

This week I had the opportunity to share Malachi’s story with a group of women at a local church. As I pulled out my notes from the last time I shared his story, I focused in on a section in which I had talked about how our prayers for Malachi have changed so much over the last four years. In the NICU our prayers were for a complete and total healing. While we continue that prayer now, we have edited it a bit and added in that in the meantime God will use Malachi to bring people closer to Him.

So as much as I cringe at the thought of our privacy having disappeared slightly, I have to rejoice and give thanks to God that He is answering our prayers. As people visit our Facebook page they are seeing so many posts that quote scripture and talk about God’s presence in Malachi’s life. If even one person comes to know Christ through that post then it was completely worthwhile.

By the way, the Chick-Fil-A mom did find the post! Her husband saw it on a friend’s page and after reading it realized it sounded oddly familiar to the story his wife had told him a few days back about a boy and his mom at the Chick-Fil-A. We have been in contact, and she is as blown away as I am!

We are also planning another Chick-Fil-A playdate in the future.

Malachi’s sleeping schedule is still pretty wacky these days. We were up a few nights ago and I was telling him about all the nice things people were saying about his picture online. How they loved his bowtie and how “dapper” he looked. The more we talked the more tickled Malachi got and he couldn’t stop giggling. I pulled out my camera and managed to catch his sweet voice saying “I love them” (a new phrase for him!), “hi”, and “bye”. We were absolutely thrilled!

Here is the clip:

 

I am guessing all this Facebook chaos will slow down over the next few days and life will return back to normal for us, which we will welcome. These last few days have blessed me as I have had so many people reminding me of honored we are to have such a sweet and loving boy. And they are absolutely right! Malachi’s heart is pure. He loves unconditionally, and looks for joy in every situation. He brings us so much happiness, and getting to share him with others has been a blessing.

One final thought before I go…

Philippians 4:8  “Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.”

When we focus on the things that are worthy of praise, there is not room for negativity! May we always choose to live a life of contentment, looking for things that are worthy of praise.

God bless,

Jake, Leah, and Malachi

 

 

Just this week I was driving down the road and marveling in my head about how healthy our little family has remained lately! The germ army heard that as a challenge and excitedly accepted.

A nasty cold bug hit me this weekend, and it seems that it might be transitioning to Malachi. When Jake gets sick he wears a mask around the house as a precaution. Malachi and I share the same bubble for 90% of our day so if I get sick it is inevitable that it will pass to him as well.

His seizures have already picked up in frequency and he has started coughing up some mucus, which he then gags on causing him to vomit. We are just covering him in prayer and hoping that it will be a short lived and easy healing. One of the biggest concerns with children like Malachi is their ability to move mucus out of their lungs. The more it sits the higher the chance it could turn into pneumonia, which can be life or death for our boy. The last round landed us in the ICU.

But fortunately our week was uneventful and easy. Soccer season ended freeing up our evenings leaving Jake and I completely lost as to how to fill the time. I was able to complete a full cart of grocery shopping and cook a healthy meal almost every night this week!

We even brought the youth group out to our rental house property for a little Wednesday night fun. The rental is surrounded by open acreage and has a pond out front so we thought we would create some Olympic events for them, like water balloon launching and kayak challenges. Jake ended up slipping in cow feces by the end of the evening sending the kids into fits of laughter.

Malachi’s therapies were successful and he worked extra hard this week! I snapped a picture of his face during his physical therapy session- when he is really enjoying something he almost goes cross eyed with joy. It cracks me up every time…

The house has made amazing progress this week. We have spent almost every evening out there seeing our vision become a reality! I took some pictures to share with you all.

The first few days of the week looked like this:

And amazingly this evening, the house looks like this:

The picture above shows the front of the house. It is a 1600 square foot house with a walk-out basement, and the tall ceilings make it look massive. The overhang on the front will be a large concrete front porch which will have a concrete ramp for us to get Malachi in and out. The van will be parked where Jake is walking in the picture, and all other parking will be to the right.

When you walk in the front door you will immediately be in the kitchen/dining/living room combo room. It is one giant room with no walls separating the different areas. Our favorite part about that room is the high ceiling!

We watched one sunset and knew we needed to add more windows on the back wall! It is beautiful!

Off the main area to the right is Malachi’s bedroom, bath, and spare bedroom. Off the main area to the right is his therapy room and our master bedroom/bath. There is also a stairwell leading to the basement, which will remain unfinished for now. We have made the staircase wide enough to add a lift in the future.

Super simple layout, and super Malachi friendly! One of the biggest “must haves” for is quick access to Malachi when he wakes up having a seizure. We will just have to run about 16 feet to get to him, which is great…we also liked the idea of him having his own side of the house for noise reasons. We can’t flush the toilet at night without that nosy little boy waking up to see what the commotion is all about.

 This is the back of the house with Jake and Malachi in there for reference. The small window upstairs is his therapy room, and the large opening beneath it is for tool/mower storage for Jake. There will also be a deck on that section only (for now). The middle section of the basement shows the walk-out part with a door and window.

Amazing progress this week! It has been so much fun to watch!

Malachi and I have several added appointments this week, so I am really hoping we can both heal enough to attend them. Many of them have been scheduled for over 4 months so rescheduling them will be incredibly difficult.

Malachi’s sleeping schedule is still pretty wacky, and we spend most nights up around 3:00 and back down between 5:00-6:00. He is always so full of joy in those morning hours. I filmed him on Friday so Jake could hear his belly laugh firsthand…he will only laugh this heartily in the mornings.

I saw this picture on Facebook recently and it really caught my mind.

When I was little we would sing songs like “This Little Light of Mine” and I never really understood where this “light” came from. I knew as Christians we were called to be different and we should proudly shine for Jesus, but never fully understood it.

But the truth is simple: we can’t create this light…we can only reflect it. Our church does children’s church for kids up to first grade. Once a month I pull out the rest of the kids (1st grade through youth) and do a kid centered sermon in the choir room. We call it the Narrow Road, and it is a great challenge for me each month to listen to what the Lord wants me to share with them.

One of the criteria that I have set is to now allow myself to go the route of Bible stories with them. While stories are important, they are getting that in other classes and I want to make the most of my 45 minutes with them and really challenge them. As I prayed about the lesson this month, this light concept just kept coming to the surface.

As much as I would like to tell you that my lessons are for them, they really help me in my walk as well. They require me to spend time in research, Bible study, and most importantly prayer so that God’s words are spoken through me.

So as I studied for this lesson I found characters in the Bible that amazingly physically shined with the light from God. Of course we see it with Jesus during his transfiguration. We see it with Moses when he spent time with God on the mountain. The Bible tells us that the people were terrified of him when he came down from the mountain because his face was shining so brightly. We see it with Stephen as he stood before his accusers and continued to witness to them about Christ.

There is nothing I want more than to have God’s glory reflect from me- not because I want to have the reputation of being a good Christian, or want people to notice me- but simply because it means that I am spending SO MUCH time in His presence that I am literally shining with His light.

And while we may not get the heavenly glow that the characters in the Bible had, my prayer is that our faith is so evident without a single word spoken that others know that there is something different about us.

I am processing some pretty big thoughts right now about faith, but I am not quite ready to share them with you. The phrase “Faith Over Fear” has been in my mind and I am finding myself needing to be reminded that faith can move mountains.

Keep us in your prayers this week as we deal with germs and exhaustion. Being sick is exponentially harder with a sick child, so pray specifically that Malachi is able to fight this before it even takes over his little body.

May God bless you this week in a very special way,

Jake, Leah, and Malachi