Have you ever been in a situation and the perfect song comes to mind that suits the moment perfectly? Over the last few weeks we have had a lot of these pop into our heads. For example, when we are at the house and someone comes over I can’t help but hum “Welcome To The Jungle”. Or when we go out in public with both boys and all their gear in our heads we hear “They came in like a wrecking ball…”

While we are slowly mastering the art of managing both boys and their extensive needs in public, it is definitely still a challenge. But we are the Carrolls and apparently love a good challenge, as life has worked hard to show us, so we are trying to not let it interrupt our lives. Jake’s last day of school was this week and to celebrate we went to the local Mexican restaurant.

Let me side note here and tell you that these last two weeks I have reached a level of exhaustion that I have never known existed. For the last five years I have had to function on very little sleep, but adding in the mental work required to take care of both of these boys is wearing me out.

On this particular day I was feeling that exhaustion and actually contemplated sleeping in the car for the 6 minute drive to the restaurant. We tromped in, turning heads as we always do, and settled into a booth. I was secretly doing a happy dance inside as Jake sat down next to Levi- he is the more high maintenance one these days.

Before we even ordered Malachi set off into a 3 minute seizure which results in him filling his diaper. When these seizures hit we do our best to preserve his dignity as much as possible and hide the fact that he is seizing. We cover his eyes and try to keep him from clawing his face in the process. We got him through that one and shortly after we ordered he went straight into another 2 minute one. Jake and I contemplated leaving, but had already ordered food so we stayed. Malachi LOVES going out and we didn’t want him to feel like he was being punished for his brain’s choices.

Then it was Levi’s turn. Little Levi started screaming uncontrollably. We tried rocking him in his car seat, distracting with toys, and nothing was working. We were feeling the burning eyes of the other customers so Jake decided to get him out of the car seat and try holding him. While he calmed down a bit he was still pretty fussy so Jake bounced him in his hands until our food arrived.

As Jake was putting him back into the car seat I spotted it…Levi had apparently filled his diaper and all that “bouncing” had “relocated” it alllllll over Jake. Jake didn’t know this yet and grabbed his silverware like nothing had happened. We still had eyes on us since our child was losing his mind, so I mouthed to Jake to look at his shirt. He said “hand me the diaper bag so I can get the wipes” and as I went to grab it I realized that it had been left at home.

Yup. Here we were, trying our hardest to enjoy a normal night out and pretend to be a typical family. And in the course of 15 minutes, 3 out of the 4 of us smelled like poop. One boy was still screaming uncontrollably, the other was laughing at his maniac brother. And Jake was still just covered with poop. And then there was me- waving the white flag and asking for our check. We surrender! So we snuck out the door as sneakily as a poop covered dad, five year old in a wheelchair, screaming baby covered in poo with oxygen and a feeding pump, and a mom who hadn’t showered or slept for three days could possibly sneak.

These are the moments we have to choose to laugh at. I told Jake we were going to try a re-do dinner another night, and I am happy to report that the other attempt went wonderfully.

Speaking of chaos, our bear friend has been back four of the last six nights. We have officially named him Rumpke, as he loves to take our trash bags back to his den. We found his path and it goes right under my bedroom window so I opened the blinds, ready to catch him in the act. I laid down and within 30 minutes I heard a boom. I jumped up and ran to the window and there he was about 8 feet from me. We had walls and windows between us but seeing him that close and that huge made my blood run cold. I watched him open the trashcan and choose a bag and head back towards the tree line.

Jake sleeps in the guest bedroom (more on that later) so I ran over and woke him up and we took a spotlight out onto the back porch to see if we could spot him. By that time he was already out of sight but we could hear him thoroughly enjoying our trash. When the light got near him he scrambled up a tree and we couldn’t see him.

His front paws are a little smaller than my hand. But his back paws are much larger!

I told Jake to go upright the trash cans so I could hear him if he came back and after some major convincing he darted out and flipped them back up for me. At that point I was officially wide awake and knew he would be back so I sat by the window and waited. Malachi ended up waking up so I went and got him out of bed and we sat and waited together with Levi sleeping soundly behind us. Sure enough here comes Rumpke the bear, wandering up to the house. He got about 10 feet from the window so I thought I would try to scare him off and hit the window hard and loud with my fist. Instead of scurrying off he just turned and stared right at me.

Talk about FREAKY. So there I sat, staring face to face with the bear. I hit the window again and he took one step back but still wasn’t convinced to run. In a last ditch effort I hit the window hard several times in a row and he ran about 10 steps away and laid down flat. I think he thought he was hidden but he is dark as night so I could still see right where he was at.

At this point Malachi was crying, as he didn’t understand why I was beating the window and he totally feeds off of my emotions. I am confidence he sensed I was nervous. I ran across the hall and got Jake back up and we ran out on the back deck (don’t stress- it is 12 feet in the air and has no stairs- yes, we know bears can climb but I knew right where this one was “hiding”) and we shined the light right on him. He panicked and headed for the tree line and crouched down in three feet of grass. We could still see him clearly and kept the light on him, not quite sure what to do next. Then he stood up on his hind legs and stared at us. We stared back at him, neither of us quite knowing what to do next. He is about the height of Jake and seeing an animal that size is just crazy. After our 30 second stare off he ran into the woods and disappeared.

Our next plan is to set off the car alarm when he gets next to it, but I haven’t been able to catch him in the act since that night. Plan B will be a bird shot in the shotgun (in the air, not at him) and if that doesn’t work we will have to go to Plan C and have the local wildlife professionals trap him and release him in the mountains.

Malachi had his last day of school and his sweet teachers cried as I drove away. We were truly blessed to have such caring people for his first year at school. They gladly accepted the challenge of learning Malachi and I confidently believe that they love my son. They asked about meeting up with him this summer and possibly babysitting for us. Jake and I are coming up on our 10 year anniversary next week and we may just attempt a seizure free/poop free/screaming free dinner out. Maybe.

I have been trying to help Malachi understand the concept of summertime and how school is out for a few months. I am hoping having Jake home will help take his mind off of things.

Levi’s personality is changing daily it seems. He is hilarious. His stridor is still there but it is quieter than before. When he is awake he is holding strong with his oxygen saturation but when he is asleep he definitely still needs the support. He has torn his cannula off several nights this week and I can tell by his dip in his oxygen sats. He only dips down to 90-93 but that is still too low for my comfort.

 

He seriously never stops moving. I never knew babies could be so active! In this video Levi shows you how insanely flexible he is. He loves to put his feet in his mouth:

 

This week we held the soccer banquet for the high school boys. I sat with the kids while Jake presented awards and every time the audience would clap Levi would get scared and start crying. Malachi on the other hand would laugh hysterically. Every thirty seconds they would clap for another player that was recognized and the cycle would continue all over again. By the end he seemed to understand the concept a bit more but the learning process was definitely a journey haha.

Malachi is continuing to have some pretty nasty seizures throughout the day, but otherwise has had a pretty great week. Last night he slept in his bed for 7 hours straight! That is HUGE! We had friends from high school stay with us this weekend and the activity in the house must have just plum worn him out. We took them to the river where Malachi got to dip his toes into the very cold water. He also got to go to the playground and swing with daddy.

Today is a pretty special day as it marks the anniversary of the day we brought Malachi home from the hospital after 112 days! What a whirlwind of emotions that day proved to be.

I can’t believe how much he has changed over the last two years! Look at these pictures from two years ago:

 

And then here are some from this week:

 

And yes, he got to ride the horse while on his belly this week! And he absolutely loved it. And yes, he is still wearing those same clothes from two years ago haha.

Now that Jake is finished with school for the summer we are officially both back in the same bedroom at night! Being a special needs parent statistically increases the divorce rate (some sources say it is as high as 80%). Jake and I are very aware of this statistic and we are trying to guard our marriage from any unwanted attacks.

To be honest, I can absolutely see how having a child like Malachi can devastate a marriage. Our life is physically, emotionally, financially, and mentally exhausting. We are both the heaviest we have ever been, the most exhausted we have ever been, the most depleted we have ever been and we have no time or energy to remedy these things. But we know that the devil can sniff out weakness easily and uses it to step into our lives so we are guarded.

But even having him back in the bed seems like a huge victory. Yes, he still snores and yes, he somehow managed to steal a king sized comforter from me that first night but it is worth it! Friday night was the first night in the same bed since the night before Levi was born in November…process that…so crazy!

These last few weeks have been challenging for our county. The education system suffered some major cuts and the county had to eliminate 17 teachers in 5 schools. As the days went by we heard more details about where the cuts would happen and 3 of them were going to be from Jake’s school. Then we got word that 1 of those cuts would likely be a math teacher.

As we waited for the cuts to happen Jake and I talked about the possibility of him losing his job- and more importantly for our family, his insurance. Our initial reaction was panic and fear. We have watched our plans unravel over the last few years, but have always had a stable income and insurance source.

But then we started to really process the things that God has carried us through over the last five years. And when we remembered that His beautiful hand of protection is on our family, we were both covered in peace.

Last week I talked about a verse in Philippians 4 that has become a focal point for our family. This week I want to back up a few verses from that one and point you toward Philippians 4:4-7:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. 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 peace of God is such a special thing. It truly doesn’t make any sense. There are situations and circumstances in our lives that we could spend every waking minute focusing on. If your mind is anything like mind, it always settles on the “worst case scenario” making me a bundle of nerves.

But like this verse says, it is the peace of God that guards our hearts and minds. It overwhelms you when it hits you in a wonderful way.

So this week we are thankful for God and his beautiful gift of peace.

Jake was not let go this week. But if he had been, I am confident that God would have already mapped out a different path for us and gladly guided us down it. A relationship with God is such a comforting thing and I am so thankful for His hand in our lives.

May God overwhelm you with His peace this week in whatever unknown you may be facing.

Much love,

Leah

 

Our little family had a week packed full of adventure!

 

Yes- therapies, doctor’s appointments, and chaos all took place this week but there are no noteworthy updates there. Malachi’s seizures are still changing significantly and have started to last 2-4 minutes each. Because of this change we are watching him closely, as seizure changes can indicate a shunt malfunction. He had a few at school this week so I am making sure to stay within a close driving distance so I can be there quickly in case of emergency.

Here is a video of silly Malachi playing with a whoopie cushion; at the end you get a glimpse of some of his sign language as he signs with his right arm for “more”:

Levi is still doing amazingly well with no new issues or changes. He is growing like a champ and looking so healthy. The biggest change we have noticed this week is his long legs.

He really enjoyed watching Malachi at his horseback therapy this week.

 

So instead I will fill this entry with some stories from our week.

Let’s start out with the most recent one: we had a visit from a bear! On the weekends we each pick a kid for the night. Jake inevitably picks Malachi as he is the predictable one, waking up at 3:30 each morning for a few hours. Levi is the wildcard and you never know what the night will hold with him. Jake and Malachi ended up in the guest bedroom and Levi and I settled into the master.

We have sound machines in every room, but over the white noise I could hear something loud. I thought maybe it was my imagination so I got up to turn off the sound machine and drifted back off to sleep. Throughout the next several hours I kept getting jolted awake by new noises but I was just so tired I didn’t really care enough to investigate.

This morning we reconvened back into the living room and I told Jake that either there was a serial killer living in our basement or there was an animal outside all night. He went to check the basement and I went to check the porch where I discovered muddy bear prints all over. It had gone after our trash, wheeling the can successfully about 50 feet from the house before it tipped onto its side, which would have been hilarious to witness! He then tried to open the can by clawing and biting it but was unsuccessful. He went back up to the house, flipped open the lid to the second can and strategically took all four trash bags inside. Literally took them- they were nowhere to be found this morning. No sign of trash anywhere!

In this picture you can see the round paw prints on the concrete.

 

After church it only took us a half a second to find his path into the woods- he must have been an extremely big bear and mashed all the vegetation in his 3 foot wide path. Jake went back there a ways and found one of the bags but didn’t want to venture too much further in search of the others for fear the bear was still close by.

We live in a rural area that doesn’t have trash pick up so each weekend Jake has to haul it to the local dump. Yesterday he didn’t get the chance to so his plan was to take it on Monday. Oops.

Malachi thought is was absolutely hilarious when I told him that a bear snuck off with all of his poopy diapers.

The boys also had a play date yesterday with the kids of one of our friends from college! There is a wonderful handicap accessible park a short drive from us and Malachi loved playing on it with daddy. He still hates the sun with a passion but this playground has built in sun shades over it so it wasn’t so bad.

Levi is getting more curious and is starting to see that being held means he gets to see more things. This week he has wanted to be carried all around the house, exploring as he goes. And while he is still definitely a momma’s boy, he is starting to tolerate his crazy dad a bit more.

But we aren’t too fond of brother’s swing:

On Monday Malachi had a pretty large seizure at school so I went ahead and picked him up early to evaluate if he should go to his horse therapy session. When Tuesday rolled around I decided it was best to keep both boys with me all day, as we were signed up to help chaperone Jake’s field trip to the river. And what an adventure that turned out to be!

For the end of the year project in his Algebra 2 classes, Jake had the students work in groups of 4 and design a boat. They had to use mathematical principles to determine the buoyancy force and see how large it would need to be to hold the weight of two people from the group. There was lots of math involved in the project but I won’t bore you with all that info.

The final step was that they had to actually build the boat using cardboard and duct tape…and then float it down the river. Yes, you heard that right! There were lots of rules, one of which was that they could only put duct tape on the seams where two pieces of cardboard came together. We were all cautiously expecting the project to be a bust and none of the boats to float but we were shocked when 7 of the 11 floated at least 100 yards, some going as far as 1,600 yards! We had so much fun watching the students trial their creations.

The day was a huge success and Jake plans to do this project for each of his Algebra 2 classes in the future. We dubbed it “The Redneck Regatta”.

After the Redneck Regatta we went for a quick stop at the local Mennonite community to buy some fresh bread and fruit.

After spending so many months in the hospital, my soul has been absolutely refreshed getting to spend these last few months back in our community. There is so much beauty and simplicity in our life, and I love every aspect of it. Bears and all haha.

Just to recap, Jake and I moved into our new Malachi inspired accessible home in October. And then Levi came in November! I had not even had the chance to unpack all of our boxes and get settled into the new house before I disappeared to Cincinnati for 4.5 months.

My original plan was to work on unpacking and tackling miscellaneous projects during those first few weeks after Levi’s “typical” birth. When that didn’t pan out like expected I was so disappointed. Now that we are home and finding routines I have been able to carve out some time to complete some of those projects.

This one has been in my mind for quite some time, and yesterday we finally finished it.

It turned out beautifully and way more massive than the picture in my mind. It is 9 feet from the top board to the bottom board and over 10 feet wide! But I absolutely love it for so many reasons.

I posted a photo of it on Facebook today with these words:

When Jake and I were given the opportunity to build a house we spent a lot of time in prayer over our decisions. One thing we both felt strongly about was saturating it with scripture- we want the presence of God to surround our family, and having His words visible refocuses (and sometimes convicts) us each day. We chose a scripture for every room and buried it in the foundation beneath each one, and when the house was finished we decorated the walls with God’s word.

But THIS VERSE is one we rely on each and every day of our lives. There is a lot of ugly in our lives. A lot of sadness, a lot of disappointment, a lot of suffering. But there is also SO much beauty. And by the grace of God, that beauty seems to always outshine the bad when we choose to focus on it.

Yes, it is obnoxiously large but that is exactly the daily reminder I need to focus on the good parts of our life. I hope that this verse takes on a meaning that is unique to you and your situation this week. That is one of the things I love about scripture…the same words can bring so much hope and encouragement to so many different situations.

So nothing too earth shattering in this blog update, but I see that as such a blessing!

One final side note- our porch plan has been working out well for rainy days. We tried it out for the first time this week during a crazy rain storm and it worked perfectly at keeping the boys dry. It is so much fun to see our design visions come to life!

Thank you for checking in on our sweet boys. We are trying to enjoy these slower days, as June holds lots of traveling for medical appointments. Please continue to pray for a complete healing for both boys, and particularly that God restores Malachi’s brain and his seizure come to a halt entirely.

Much love,

Leah

 

Look who made the front page this week! The article was so kind and complimentary of the way Jake has carried himself through our difficult few months. Here is an excerpt from the article:

“Throughout these troubling times, the class noted how Carroll would teach his class all week, then travel to Cincinnati to be with his family in a special hospital for Levi until Sunday, when he would return home and begin his week anew. ‘We’d see him coming down the hallway just smiling, you’d never have known that he had anything going on in his life,’ Stewart said. ‘When we found out, we knew where we wanted the money to go.'”

When I read the article I told Jake that he was going to cry when he read it. He rolled his eyes at me and laughed, saying there was no way a newspaper article would make him cry.

He was wrong. We both teared up as we read it. It was so wonderful to hear that the way Jake carried himself through our challenges was noticed by the teenagers. I hope that like a pebble thrown into the water, these teens will remember that bad times don’t always have to break you…especially when you walk with the Lord.

Oh what an adventure filled week Malachi has had! This video is sure to put a smile on your face:

Malachi’s field trip on Tuesday was a big success; he was so excited when we got there and heard all of his friends and teachers. Just like I promised him, I dropped him off and left to give him a little independence.

His teachers said he did great and did not have a single seizure the entire field trip. Usually new environments and lots of stimulation can bring those on so this was very surprising.

Side note- his seizures have changed a bit lately. Malachi has intractable epilepsy which means they fail to be controlled. His brain is extremely globally damaged (which means the damage is all over and not in one specific area) so he has several different seizure types. These days instead of throwing his arms outwards during a seizure he is bringing them inward and claws at his face in the process. He isn’t doing it on purpose, but when his brain panics his muscles all start to contract. It is making me a nervous wreck as he is getting dangerously close to his eyes. His grip during these episodes is incredibly strong and even I can’t pry open his fingers when they grasp on to something.

I couldn’t decide what to do with myself and Levi while we waited, then I remembered that I had a Red Lobster gift card in my wallet! Score! I had a wave of confidence and off to Red Lobster we went. Needless to say the lunch was a nightmare haha. I forget how loud Levi is when he breathes as I have grown used to it. Red Lobster is a quiet place so we stuck out like a sore thumb.

Feeling self conscious, I ordered my food immediately when we sat down so we could get out of there quickly and not disturb anyone else’s meal. And let me just say…it is a good thing I did as the meal continued to spiral out of control. Levi projectile vomited twice, sounding like a choking baby dinosaur each time which only drew more attention. Then he decided to loudly fill his diaper and at that point I realized that we needed to be done.

I think I set the record getting in and out of Red Lobster and consuming a full meal in under 17 minutes. I am pretty confident the restaurant was glad to see us go. Oh well- we tried haha!

Well it looks like the jealous bug has officially bit Malachi. This week we are seeing some typical behaviors for a five-year-old first time big bro. If Levi is getting some extra attention Malachi will start crying until we show him some attention too. I have been trying my best to dote on both boys equally but it still hurts Malachi’s feelings when I focus on Levi.

To combat this, I have been trying to give Malachi more responsibilities as big brother, like “watching” Levi when I have to go into another room briefly. Malachi thinks he is pretty big stuff when this happens. Maybe too big for his britches as once again he flung himself out of his seat and onto the floor this week. It nearly gives me a heart attack every time!

I took a few videos for you so you can see their sweet interactions. The first one was when I asked Malachi to show Levi how to play:

And this second video is just too sweet not to share. I let Levi sit on Malachi’s lap and he snuggled right into him. Malachi was so gentle and even brought his arms up to hold Levi:

We also had a little excitement at school this week. I went to pick Malachi up and his teacher told me that a bear walked up to the fenced in playground and started scratching its back on the fence! Just another day in the country.

I have been tackling my incredibly long to-do list. I have been devoting a few hours each day to making phone calls to insurance, specialists, and other medical related organizations to try to get the best services and care that I can for each boy. I took this screenshot and sent it to Jake when he asked what we had been doing all day. On this particular day, the phone calls continued until 5:30 that afternoon.

I took Levi for an evaluation with Malachi’s physical therapist so he can start PT this summer. She was pleasantly surprised with how on target he seems to be, which was music to my ears. I also met with Early Intervention Services this week to set up a care plan for him. We have been able to get a really great feeding therapist to take his case and I am so eager to start those sessions and get him eating by mouth.

Levi is changing by the day! He will be 6 months old tomorrow which is so hard to believe. He has turned into quite the momma’s boy which makes me so happy. He does silly things these days, and smiles a lot. He is starting to want to be held often (by mommy only) and he loves his toys! The toys seem to create the most jealous moments for Malachi so I don’t let him play with Malachi’s favorites unless he is at school. Levi is also putting everything he can into his mouth.

Today is Mother’s Day here in America (we have a lot of international followers). Jake and I are fuddle duds who don’t celebrate many holidays so we aren’t doing anything super special- my gift is a nice long nap as soon as I finish this entry.

But last night I started processing the term “Motherhood”.

Motherhood has always looked so different for me. The first time I saw both of my boys was on the screen of a digital camera. It was 3 long days before I got to meet Malachi, and while I did get to meet Levi before he was transferred, it was two days before I got to visit him. I will never forget those nights in the hospital for both boys. I laid in bed listening to babies crying and being comforted by their mothers. I heard the voices of visitors gushing over the newborns in the rooms around me. Yet there I was, alone and childless. My plunge into motherhood left me feeling very desperate, alone, and unworthy. Just a shell of a mother with no child to prove that I had in fact given birth.

Motherhood for me means I have to sign countless medical releases to allow doctors to poke, prod, heal, and fix my children, knowing the painful state they will be in after. And I have to be their voice. I have to think through worst case scenarios and research to make educated decisions for their care.

Motherhood for me means that I have not only watched but held down my children as nurses have attempted to get hundreds of IVs, intubations, and blood draws. I have had allow them to inflict pain on my children, pleading desperately with God that in the long run we will see the benefit. This is the hard stuff of motherhood…this is the type of motherhood I don’t wish on anyone else.

Motherhood for me means I have to helplessly watch Malachi be overtaken by seizures that scare him but have to keep myself calm so he senses peace when he comes out of them. It also means I obsessively watch every movement for Levi, terrified that he too will develop epilepsy. Motherhood for me means always being aware of SUDEP (sudden unexpected death in epilepsy) and waking up several times a night to make sure he is still breathing.

Motherhood for me is equated with fighting. It is desperately trying to get others to see the strength and potential in my boys. To see their worth. To share the hope that I have for each of them. Mothers shouldn’t have to fight this hard.

Motherhood for me is a sea of emotions. Every day I fight temptations of depression, grieving, and loss. But I know that giving into those emotions will only hurt my ability to care for my children, so I have to find ways to stuff those emotions out of my thoughts and focus on the good.

Motherhood for me is laying in bed at night thinking about the unknown. The questions marks, the what if’s, the variables that could go wrong at any moment. I think about future surgeries, future hospital stays, future bad news, future emergencies. And while I want to prepare my heart for them, I just don’t think I will ever be able to adequately do so. So I simply have to swallow the lump in my throat and focus on better things.

Motherhood for me means a constant, daily, reliance on God. Because I simply cannot do this alone. The task is just too large for me to do apart from Christ.

Motherhood can take on different shapes and forms for each individual person. Sometimes I get hit with pangs of jealousy, just like my Malachi, as I watch how simple motherhood can be for others. Oh to have only the good and fun parts, and not have to worry about the bad.

But there is a quote that kept coming to mind this week:

“Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding he is exactly the person he’s supposed to be. And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.”   – The Water Giver

Paul tells us in Philippians:

“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.”

As I read these words this week I found myself struck by the honesty of his words. It is so easy to find discontentment in our lives. It is so incredibly easy to find things to whine about, things to mourn over…and let me say that there is a time and a place when those moments of mourning are completely necessary and acceptable.

But there is also something so refreshing and healthy about choosing to be content. And relying on Christ to give you the strength to find and cling to that contentment.

Motherhood to me means finding contentment and happiness peeking in through the storms. It means looking past the ugly, the difficult, and the hard and straining my eyes to find the lovely. And to not just find it, but celebrate it.

Whatever motherhood may look like to you, I pray that you are able to find contentment in it. I pray that you are always able to choose joy. And I pray that you are able to see the truth in the words “I can do all things through Christ that gives me strength.” May that nugget of truth drive you during the hard times.

Please continue to pray miracles over my sons. We are continuing to believe that God will heal them both, and what a glorious day that will be!

God bless,

Leah

This week we broke one of our big rules and took BOTH boys to Jake’s school. Schools are germ factories so we avoid them at all costs. Yes, Malachi does go to school but he stays quarantined in his classroom all day and only goes for limited chunks. When I told Malachi that we were going to go to “daddy’s school” I could see the wheels turning in his little brain, trying to figure out what I meant.

One of the business management classes at the high school had the challenge of creating a product to produce, market, and sell. They had the option to split the profits among themselves or donate them to a special cause, and as a class they voted to donate them to our boys. What a selfless and amazing thing!

Jake mentioned to me a few weeks ago that they wanted us to come in so they could present us with a check. I asked him if it was going to be a “big deal” and he said it was super casual and he thought it was simply a pizza party in the classroom.

Jake is not a “details” guy.

When Levi, Malachi, and I arrived we were taken to the stage in the cafeteria where news reporters were present, ready to capture the check presentation on camera. Members of the community had come out as well, including the gentleman who had organized Jake’s Angel Flight.

If you know me personally you will smile as you read this, knowing how awkward I get in the spotlight. During the all-eyes-on-me moments I overthink everything I do and this was no exception haha. Like when we filmed the Chick-Fil-A reunion last summer all I could think about through the meal was “What is the proper way to eat a waffle fry…one big bite, tear it into pieces…?” I am undeniably an overthinker. But beyond the awkwardness, it was such a wonderful sentiment for those young adults to make such a sacrificial decision.

Jake and I are continually blown away by the support we receive. People use the word “humbled” in situations like these, and that is by far the best adjective I can think of. Humbled and blessed.

 

This picture was taken right before my loving husband turned to me and nodded for me to give an impromptu speech. Thanks dear haha.

The rest of the week went relatively smoothly. Lots of fights with insurance, lots of phone calls, oxygen tank swaps, horseback therapy, pharmacy runs, and other mundane but busying tasks.

Malachi had a wonderful week at school. I love getting pictures throughout the day.

 

This week they will be going on a field trip to the aquarium! Malachi loves the independence school brings so Levi and I are going to drive him there (about an hour away) and let him walk around with his classmates without us. He is so excited!

This week I put him in a shirt that said “Big Bro Malachi”. When I read it to him and showed him the words on his shirt he was so proud. Every time someone would read it he would puff out his chest proudly.

I have been trying to sort out our schedule for the summer and what it is going to look like for both boys. I am not going to lie- it is going to be pretty intense and crazy. We have trips to Vanderbilt, trips to Cincinnati, specialist appointments, youth camp, and weekly therapies for both boys. It is overwhelming to think about.

But these boys are worth it. They lay on the play mat together every day after school and just stare at each other, smiling sweetly.

Other highlights from our week include play dates with friends and lots of time on the swing!

And of course, watching the sunset…that one never gets old.

Levi woke up this morning coughing so we have been on high alert making sure he isn’t getting sick. We are leaning towards it being allergies but are a little nervous either way. Every time he starts coughing it triggers his gag reflex and he vomits. We are very worried about aspiration as his vocal cords aren’t able to protect his airway as well as everyone else.

Please keep him in your prayers.

Nights have been exceptionally tough for me lately. We have been approved for nursing hours for Levi but can’t find a provider that will come out to our area. Last night I tallied how many times I got up with Levi and it was 15. And that was a night with just him. Jake takes Malachi duty on the weekends. When I have Malachi that number increases significantly and we get up for a few hours at 3:30 every morning, as dictated by his seizures.

Truthfully, I have been exasperated. I dread nighttime as the level of unpredictability overwhelms me. But one of those nights this week turned out to be an encouraging and special one between God and I.

I am sure other Christians can relate, but there are times that I just don’t feel connected to God.  I am praying, reading my Bible, and the desire is there but I just don’t “encounter” Him. And when that happens I find that I truly miss our relationship!

I have been going through one of those times lately, and I have been asking God to reveal Himself to me. He has been speaking through me but not necessarily to me.

One of the more difficult parts about nighttime is that I can’t relax. I have to stay on my game and be ready to spring into action- whether that be racing across the house to get to Malachi as he has a large seizure, or racing to pick up Levi before he vomits and possibly aspirates it taking it into his lungs. There is no time for that groggy early morning reaction time.

It was 2:50am on Saturday morning and Levi woke up gagging…again. I knew a reflux vomit was coming and I reached for the blankets I keep stacked at the foot of the bed for this very purpose. Could I catch it in time to not have to turn on the lights for clean up? I paused his feeding pump and grabbed a syringe to vent his belly from any gas pains that might be causing his gags.

I jumped up from a dead sleep and squatted down to the ground for what felt like the hundredth time that day, my back clearly protesting. And it was in that moment that God chose to speak to me.

The words were very simple and concise. He said: “Just wash their feet.”

I don’t know if you have ever experienced God speaking to you, but it is such a special thing. As He spoke those words I processed them in my head and said the phrase over and over again as I finished cleaning Levi up and crawled back into bed a few minutes later. I knew that He was referencing the New Testament scripture about Jesus washing the disciples feet but was having a hard time connecting the dots in relation to my boys. I knew it wasn’t meant to be taken literally, but was a metaphor of sorts.

I knew that in the morning I would doubt that I had heard these words, so I opened up the notepad on my iphone to jot them down so I could study the story later. And as God frequently chooses to do, He intercepted my fingers on the keyboard and continued to speak very clearly to me.

“Just continue to wash their feet. Just continue to put their needs above your own, because that is denying yourself. That is joining me and taking up MY cross. That is loving the way that I loved. That is serving the way that I served. I have not called you to a life of comfort. Just continue to wash their feet through the sleepless nights, hospital stays, countless surgeries. Just simply continue to wash their feet.

This is the task you have been given by me. Am I not going to continue to give you the strength to continue in this life of service I have called you to?

Just continue to wash their feet. Because that honors your heavenly Father.

I am ‘the God who sees’ and my daughter, you are seen.”

 

I still get chills reading this. As I read the words He had spoken I was completely overcome with emotion and just laid in bed sobbing. I was reminded that this life I live is no accident. This was ordained by God and I was chosen for this.

John 13 tells the story about Jesus washing the disciples feet. And as I read the account, I was drawn to the last section:

¹² When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. ¹³ “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. ¹⁴ Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. ¹⁵ I have set you an example that you should do as I have done for you. ¹⁶ Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. ¹⁷ Now that you know these things, you will be blessed if you do them.

It is so easy for us to fall into a trap of thinking we deserve things. We deserve to be recognized, we deserve to be catered to, or we deserve a break from the tough stuff of life. But what a revolutionary mindset Christ has presented to us through this story. Regardless of status, we are to serve. We are to deny ourselves and act out our love for one another by putting their needs above our own.

Jesus taught the disciples that day to go against their prideful nature and serve in love.

That moment with God refreshed me beyond what words can describe. And what blows me away is knowing that God is THAT accessible to me. My faith is mediocre. I am not an “exceptional Christian”. I am just like any of you, striving to live out a life of faith like we are called to do.

But I asked God to speak to me, and not only did He listen but He reached out to me with such clarity. He loves me THAT much…to remind me that He sees me and to encourage me to press on in this challenging life.

Have you had a God encounter? ASK FOR ONE! And then watch and wait because God has beautifully creative ways of speaking to us.

And as you can guess, those words have been playing in my head as a motto of sorts as I go throughout my days and nights. Just continue to wash their feet and serve and love them like Jesus would.

And that simple reminder has allowed me to wake up- yes, even 15 times a night- with a smile on my face, excited that I have the opportunity to show my sons what the love of God looks like.

My challenge to you all- whose feet is God calling you to wash? Who in your circles is undeserving, but needs to experience God’s love? Are you willing to serve like Christ and put your pride and status aside? Are you willing to metaphorically squat down and humble yourself to show God’s love to someone undeserving?

And may God encounter you this week!

Much love,

Leah