Consider It All Joy

The Carroll clan is Covid free and so incredibly thankful to be on the other side of it. I ended up going for another Covid test and added on an antibody test to see if there was a chance I had already had it. It came back positive for IgG meaning I had it in the last three months and negative for the IgM meaning I have not had it in the last three weeks. I must have been an asymptomatic carrier at some point, which completely baffles us. But it does explain how I wasn’t getting it this time around!

Malachi’s seizures essentially paused while he had Covid. He had some of his mild ones each day but nothing significant. But this week they ramped back up worse than ever before. We have been up until 5am several nights this week trying to manage seizures. We keep a “rescue” medication on hand that we are to use if his seizures go longer than 5 minutes, but it slows his respiratory rate so we have to call 911 when we give it. In the second half of this week he had 3 seizures that lasted longer than 5 minutes but I still felt like he was safe enough to not administer the meds. He was having some major tummy aches which were causing the seizures so we made some formula changes to see if we could get it back under control. While he is doing better we haven’t found the perfect solution yet.

When we go through hard nights like these, especially several in a row, we throw all schedules out the window and just focus on daily survival mode. Obviously we are all mentally and emotionally exhausted. But now that Malachi is bigger my muscles take a beating as I try to physically hold him in a safe place through his larger seizures. He is insanely strong during seizures and keeping him from hurting himself or smothering himself is quite a challenge. I feel bad even talking about my physical discomfort knowing that Malachi’s has to be much worse! I can’t imagine what his body must feel like the next day.

But overall Malachi has had a wonderful week. He has been so happy, finding joy in everything around him.

We have been doing lots of family game nights and watching his competitive spirit come alive is so fun. Right now Mouse Trap is his favorite game. He always puts me in the mouse trap when he gets the chance, and steals cheese from Levi or dad. I took a video this week so you could see how well he communicates his wishes to us.

Levi’s energy level seems to increase by the minute. It is fascinating and horrifying all at the same time.

With Jake back at work we do a lot of car naps for Levi. It is only when he is strapped in and has nothing else to do that he will surrender and close his eyes for a much needed nap!

The weather here in east Tennessee was beautiful this week so we spent hours and hours outside. We spent so much time outside on Wednesday that we accidentally got sunburned!

Malachi’s freckles made their appearance for the season. It always makes me smile to see those freckles appear.

We invited friends over to play on the playground and swim in the pool and it was the happiest I have seen both of my boys in a very long time. At one point Malachi was laughing so hard that the neighbor came over to tell us she could hear him all the way on her back porch! I videoed him as he was laughing the deepest chuckle we have ever heard from him.

There are days when I feel like just a caregiver. There are days I feel like a nurse. And there are very rare days I just get to feel like a mom. This week I had lots of “just mom” moments and they were so refreshing to my heart.

Watching my boys play with other children… everyone feeling included and “seen” with effortless inclusion…it brought such a big smile to my face.

Seeing joy pour from the hearts and faces of my boys is something I never tire of. I am so thankful that God gifted Malachi with the ability to communicate his emotions so clearly to us. This life would be much more challenging without affirmations from him.

As I mentioned last week, Jake and I tackled lots of projects in the house while we waited impatiently for Covid to leave. We were able to gather enough materials around the house to bring one of my ideas to life that had been on my heart for a long time.

We spend lots of hours in our main living area. Many of those hours are mentally challenging and my emotions can wander all over the place. It is the room that sees the most variety in my emotions and takes the brunt of my anger. To combat the hard moments we have tried to saturate the room in scripture to help me refocus. There has been a space on the main wall that I stare at often, and I knew there was message I needed to place there with something challenging but couldn’t settle on what it might be.

This week we gave legs to the project and knocked it out with some of the pallet wood from the boys playground crate, some stencil paper, and some extra pant. The sign is absolutely giant at 9 feet long and serves its purpose of catching my eyes and distracting me from negativity.

James 1:2-4 “Consider it all joy, my brothers and sisters, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

The devil grows stronger in pity parties, and the more you feed your disappointment with thoughts the more it has potential to separate you further from Christ. I have found this to be so incredibly true in my own life.

But when I take the time to look past the current struggle and see what it is producing in my life I start to see purpose in the pain. Trials can defeat you or trials can build endurance in your faith. You can choose to view yourself as a victim in your trials, or you can view yourself as an athlete training yourself for something even greater.

Consider it all joy. It is one of the most unnatural things you may ever ask your mind to do, but it can transform your perspective if you allow it. I know that it does exactly that for me on a daily basis. And I hope that one day it becomes more natural that I don’t find myself saying it two dozen times a day!

Thank you for so strongly lifting my family up in prayer over the last few weeks. We are so blessed to have an army of support to lean on. We truly love you all and recognize the part that prayers had in the healing of our boys.

Sincerely,

Leah

Casting Down Imaginations

I am happy to report that it seems like we have made it through the worst of our battle with Covid unscathed. I will break it down for each family member to give you an idea of what this week has looked like.

Levi- by far he sailed through it the best, which truly shocked us. We have been told with his airway issues to expect ICU stays with a common cold, so Covid had us very worried. He never ran a fever, and his oxygen saturations were not affected. There were times his saturations were BETTER than his normal, which is bizarre. He dealt with congestion, coughing, and lethargy with his naps lasting up to 3 hours each day. He is on day 11 and aside from sounding a bit nasally he is back to his normal, wild self.

Malachi- he struggled quite a bit mid week with his oxygen saturations but never dipped below 90. The entire week he hung around 92-93. He lost his color for several days and looked very pale and sickly. He never ran a fever, but dealt with a lot of congestion although none of it appeared on the outside…no runny nose, etc. He threw up a lot of mucus and coughed pretty intensely for several days mainly at night. Sleep was rough and one night he didn’t fall asleep until after 5am. His little body struggled for those days, and he was feeling so puny he drooled nonstop. But he has been slowly improving and is on day 9.

Here is a picture from this weekend and you can see how much he has perked back up.

I did end up taking the boys to the pediatrician on Monday morning and had them tested. The pediatrician listened to their lungs to get a baseline should things change and did a covid test. The test came back negative but the pediatrician was confident it was a false negative based on their symptoms and the timeline with Jake also testing positive. They offered for us to bring them back later in the week for another test (they sound around day 5-8 would be most accurate) but we decided it wasn’t necessary. My mother who spent one hour with the boys on Thursday evening tested positive a week later, and she had not been anywhere since she left our house that night. She had not spent time around Jake so we felt confident she had gotten it from the boys.

Levi was pretending to give Malachi meds in his armpit. The hidden side of any sickness in our house in the medications. Without any sickness I administer 12 medications a day between the two boys. With covid we added lots of pain meds which increased the boys meds to 20 and at least 5 more syringes for water flushes. Lots and lots of syringe washing took place this week!

Jake- Covid knocked him down! He said it felt like a very bad flu, but it was like no other sickness he had encountered. Jake never ran a fever but it took over his chest and lungs for the first few days and moved upward from there into his head. He had a nasty cough that sounded very similar to croup. He “bark” coughed at night and had to sleep on his stomach to keep his lungs from burning. He dealt with achiness and headaches all week, and still has a lingering headache that won’t go away. He slept 10-11 hours a night and napped a few hours throughout the day. We started some major vitamins the day after he tested positive which we are assuming helped a bit. He is also on day 9 and through the worst of it. He will be able to return to work on Wednesday, and by the grace of God he had several snow days this week so he will only have to take 4 days off total for all of it.

Mom- I spent the week getting coughed on, sneezed on, and covered in covid cooties. We took zero precautions since the boys were all sick and just assumed we would all get it. Levi and I have even shared drinks this week. But I am still negative y’all! It is baffling to us. I did a PCR test the day Jake tested positive and it was negative. I tested again on Thursday which would have been a full week since Levi’s first symptom and that test also came back negative. I have had zero symptoms, although all week I have been reading into anything new and different in my body. One evening I thought I was getting a sore throat but by the morning I was fine. I also had major fatigue but it was the day I was up with Malachi all night and was running on two hours of sleep. A little bit of rest took that fatigue away.

I feel like God has most definitely put a hedge of protection around me knowing that I would need to care for three sick boys. It definitely defies logic. I have read that type O blood handles the virus better than others but I am not type O. I have some weird blood, and maybe that has something to do with it? When I had Malachi I lost a significant amount of blood (1.5 liters) and required 5 blood transfusions. One of those introduced a kell antigen into my system and my body has created antibodies for it. If I should ever need a blood transfusion again I have to tell them this information because more kell positive blood could make me very sick. I donated blood a few months ago and they sent me a kind letter thanking me for my donation but telling me that they can’t use my blood for anyone other than me so donating again wasn’t encouraged haha. Maybe my weird blood protected me from Covid???

So Jake, Levi, and Malachi will all be done with isolation on Wednesday, but because I never tested positive I am still in quarantine until March 5th. I find myself stuck between being grateful I didn’t get it and being disappointed we will be locked in the house even longer. I don’t mind being home, but the boys miss our errand running and grocery pickups. I have been taking them on lots of drives around town to give them different scenery but they are definitely reaching their max of home life. It has been too cold to enjoy the playground so the cabin fever is setting in.

This is a photo of Levi being told he couldn’t go out to the playground in 20 degree weather. He put his jeans on and everything thinking it would give him more negotiating power if he was already dressed for the outside world. Poor buddy. I feel semi-bad for taking the picture but he was just so darn cute. And showing him pictures of him crying weirdly makes him stop crying and start laughing.

We have been playing lots of games as a family and also making up lots of games, Jake and Leah style. Like how long can we keep the balloon in the air without it touching the ground, with one of us using Malachi’s arms instead of our own. 81 is the record by the way. Lots of silliness, lots of laughter, and lots of movies. If we have to be sick, at least we are home and with each other. We have also been tackling the things we try to avoid, like steam cleaning carpets and draining/cleaning the therapy pool.

We have been so blessed this week by lots of friends dropping off goodies and meals. Lasagna, soups, salmon, fresh eggs, banana bread, pizza, and so many other yummy things. We have definitely not lost weight through this sickness haha.

While there were several moments of worry for me this week I tried desperately to take every thought captive and just focus on the next hour. The days blurred together with this mindset but did keep me from spiraling down the rabbit hole with worry. I believe with all of my heart that God protected our family in a miraculous way. With both of the boys having major lung and airway issues things could have been much much worse.

When it comes to Bible translations I am a NASB or an NIV gal but I really love studying different translations when it comes to specific verses. It intrigues me how the slightest change in words can paint a whole thought in my mind. For tonight’s devotional I want to pull the verse from the King James Version.

1 Corinthians 10:5 Casting down imaginations, and every high thing that exalteth itself against the knowledge of God, and bringing into captivity every thought to the obedience of Christ;

I myself am guilty of tossing around Biblical phrases like “take every thought captive” but not fully understanding the whole verse. And when I looked at the verse in it’s entirety it blew me away as it pinpointed two of my biggest hurdles…my imagination and my pride.

Imaginations can be such beautiful things as they allow you to picture the impossible. Imaginations allow for belief in miracles, and they teach your brain to entertain the unseen. But like anything else in our lives, they can also lead us down sinful paths and lead us to darkness.

I have always had a vivid and big imagination. It is a detailed one that can construct whole books if I allow it. But in my life right now my imagination can direct me towards all the worst case scenarios with each of my children. Unfortunately I have so many mental backdrops where bad things have happened, that replacing the timeframe and ages of each of us in those scenes isn’t difficult to do. As this verse reminds me, there are moments when we are called to cast down our imaginations.

We are also called to cast down “every high things that exalteth itself against the knowledge of God”. This one hits a littler deeper with me than the imagination one, as it touches my pride. I fully believe that God holds my family in the palm of His hand. I also believe that His plan for my children is so much greater than my own. So why do I challenge Him when I *think* that His plan isn’t panning out? Why do I hand situations over to Him only to grab them back in prideful fear, thinking that I can do it better than He can. Fear is the main motivator but either way it is in these panic moments that we miss opportunities to show our undefiled love to the Father. We miss a big chance to honor His lordship in our lives.

Finally, the “take every thought captive” part isn’s just a self control challenge. It has a bi-line we often overlook. The verse tells us to bring those thoughts to the obedience of Christ. I have been rolling those words around in my mind. It reminds me that, as children of God, our actions AND our thoughts must be obedient to Christ and the scriptures. This does not come easy to me. My inner thoughts most definitely do not always fall under the obedience of Christ. But what a good challenge to focus on, and what a necessary weapon to sharpen while my family is in a safe place with their health.

I encourage you this week to look that scripture up in the many different translations and see what piece of it God wants you to cling to and focus on. I love how living and breathing the Word of God can be.

Please continue to pray that we progress toward good health and that there are no lasting effects of this virus. And please pray that God grants my children patience and sanity as we stay home for another few weeks.

Much love,

Leah

COVID Carrolls

The Carroll crew officially has COVID. I feel like I just heard each of you gasp all the way in Tennessee haha. If you have been following our journey for long you will recognize what a big deal this could potentially be for our crew. I will summarize a bit of the journey so far, but everyone is at home right now and managing it well.

Early this week the boys had several specialist appointments at the hospital outpatient center. We were there multiple days for multiple appointments, and keeping Levi contained in the rooms while holding Malachi was quite the struggle. At one point he laid on the floor in a fit and all that was running through my mind was “Well, here come the germs!”

By late Thursday night he had a hint of a runny nose, and by Friday he was snotty and coughing. We suspected it was just a cold based on past sicknesses with him but stayed away from others just in case. We started hourly temperature checks and oxygen level checks for all of us and crossed our fingers. Saturday morning Jake woke up and had a slightly sore throat. We figured he had picked up whatever Levi had since he often sneaks sips of daddy’s drink so we scheduled a test to get Jake tested.

As we drove over Jake said “I will be shocked if it comes back positive, because I really don’t feel bad.” Sure enough, he got a positive result and sure enough we were shocked. I immediately called a local place that was doing PCR COVID testing (the send off ones) to schedule a test for me, and that came back negative. So far, I am still feeling fine and don’t have any signs of sickness.

Levi continued with his coughing and congestion and sounds sick when he talks. He is breathing great, praise the Lord, and his oxygen saturations have been impressive, even for normal Levi, hanging around 97. Malachi started with some diarrhea on Saturday night and began coughing. He is the one I am most concerned about so far as his breathing has been shallow and faster than normal. His oxygen level is usually around 95 and has dropped down to 93 so we are watching him extremely closely. His seizures have not been worsened at all. And neither boy has had a fever.

Jake went from shocked from the positive result to totally agreeing with it as the day progressed. It is in his chest and lungs and he says it is different than any sickness he has dealt with before. When he was trying to sleep last night he said his lungs burned like he had been running. Today he started lots of new supplements and vitamins as recommended by the doctor. His oxygen saturations have also been normal and he is not running a fever.

We are in completely new territory with this sickness so we are praying each day and believing in God’s protection over our family. My mind keeps mentally planning for having to take one or both kids to the hospital at any moment, which is a weird spot to be in. Each meal, each shower, each night in my own bed I find myself wondering if tomorrow will be a different setting or circumstance. I will be taking them to the pediatrician tomorrow to get a game plan in place should things change. We aren’t paralyzed by fear, like I assumed I would be. We are just taking it hour by hour and praying to be showered with God’s peace and good rest for all.

Everyone is in good spirits and during the daytime hours there are lots of giggles and smiles. They crash hard and fast for naps. Night time is proving to be difficult with lots of coughing and subsequent pain.

Now for some pre-COVID updates…

The boys met with their neurologist and the appointment went great. Malachi sees an epileptologist for seizures, a neurosurgeon for his shunt, and a neurologist for the other things his brain does to his body (cerebral palsy mainly). He also goes to Vanderbilt for the orthopedic and spinal surgeons so mainly we use the neurologist to talk about his tone.

When the brain is damaged in certain spots it can cause hypertonic muscles (super tight) or hypotonic muscles (super loose). Malachi has extensive brain damage and therefore has “mixed” cerebral palsy. Some parts of Malachi are tight, like his hips, ankles, and knees. Some parts are loose like his abdomen, neck, arms, etc. There isn’t a way to “fix” either, but there are ways to manage them. For tight muscles one of the common treatments is injecting botox to relax them a bit. Or some surgeons will do tendon lengthening to help relieve some of the tight areas. Malachi doesn’t really need any of those corrections right now, but the neurologist wants to see if starting him on a small dose of a muscle relaxant called Baclofen will help Malachi at all. It could have the opposite effect and make his loose muscles even more loose, and in rare cases it can increase seizures so we are proceeding with lots of wariness and caution.

Once we are back to 100% health I will start Malachi on the oral medication and we will see what happens.

Levi also sees the same neurologist, and for him the conversations go a little bit differently. When Levi walks with his braces in his shoes you would not likely recognize there are any issues. But when the shoes come off you see how much his ankles are affected by his cerebral palsy. He has hypotonic (loose) CP and it seems to be getting worse in his feet, but slightly better in his core.

The neurologist was legitimately shocked by how well Levi is functioning in spite of his CP. He truly couldn’t believe how much his braces change his abilities. He is very pleased with how well he is doing with a little bit of support.

That is the really cool thing about Levi- he hasn’t ever known any different and has taught his body to cooperate with whatever he wants to do. Seeing his resilience makes me so proud of him.

We also met with Malachi’s neurosurgeon this week to check his shunt function. He did a quick test by pushing on the machine and felt confident it was still functioning as it should. He agreed we could wait to do any further imaging for a bit.

As you probably remember, Malachi was an angry little elf at me for not taking him to the zoo on his birthday. Our car had some mechanical issues the night before and we couldn’t go. As promised, I took him after our early morning appointment on Tuesday and we got there shortly after they opened. I had to google the place to make sure they were even open as we were the only car in the lot! We had the zoo to ourselves which was great for my germ conscious mind (oh the irony).

But unfortunately going so early meant that many of the animals weren’t awake. Malachi looks forward to a few things each zoo trip:

  1. The jaguars are hands down his favorite. Right before we got to the enclosure, which was obviously our first stop, they gave the monkeys next to the jaguars Valentine’s day bags with popcorn inside. The monkeys were super excited, thereby distracting Malachi’s jaguar friends and they wouldn’t come down within his vision range. He was devastated, but I promised him we would try again before we left.
  2. Feeding the giraffes. But on that day there weren’t offering that option. Boo.
  3. Riding the zoo train. But that wasn’t running that day either.
  4. Talking to the parrots. But they were in their inside house enclosed fully by glass and not interactive.
  5. Petting the goat’s horns. THAT we were able to do, and one of them even rubbed his horns on Malachi which made his giggle.
  6. The crow. Yes, that sounds weird. But he talks! Only that day he was as cranky as Malachi and didn’t say a word.

As we continued winding through the zoo Malachi was getting more and more disappointed. It was almost comical how things just weren’t working out over and over and over again.

But then we had a saving grace moment that they boys still talk about 12 times a day. The chimps.

As we visited the chimps several came over to the glass to see Malachi and Levi. Then it happened…one of them pooped right in front of the boys, stuck his finger in it, and ate it. I was disgusted, as I am assuming you are now after that mental picture I just painted. But as I narrated the scene to Malachi he was overcome with joy and laughed until he couldn’t laugh any more.

Who knew that chimp poop would be the birthday memory we truly needed. Malachi also thoroughly enjoyed the pressure washer that one of the employees was using. I told him we could pretend it was elephant trunks spraying the other animals and he loved that storyline.

We spent lots of hours on the playground this week and Levi is getting braver by the day. Malachi has been trying all the different swings, trying to find a favorite.

We are entering a week of unknowns. This week is annually a really hard one for me mentally as it marks lots and lots of big surgeries and ICU stays for the boys. Malachi’s stomach perforated in the NICU and he had to have an emergency surgery we were told he might not survive. A year later he contracted the flu and the situation became very dire with a PICU stay. And this was the week for three surgeries for Levi on his complicated journey. I keep flashing back to doctors telling me that when Levi gets a cold he will end up in the ICU, and now here we are with COVID. I can’t predict what the next several weeks hold for my warriors and the lack of control is very hard for me.

I read a quote this week that has been on my heart all week, and with the new updates it seems fitting.

“When you are hanging on by a thread, make sure it’s the hem of His garment.”

There is a beautiful story in Mark 5 that talks about a woman who had been dealing with a bleeding issue for 12 years. The Bible tells us that she had been to several doctors and spent all of her money chasing treatments but only grew worse.

When she heard about Jesus, she came up behind him in the crowd and touched his cloak, because she thought, “If I just touch his clothes, I will be healed.” Immediately her bleeding stopped and she felt in her body that she was freed from her suffering. At once Jesus realized that power had gone out from him. He turned around in the crowd and asked, “Who touched my clothes?”

“You see the people crowding against you,” his disciples answered, “and yet you can ask, ‘Who touched me?’ ”

But Jesus kept looking around to see who had done it. Then the woman, knowing what had happened to her, came and fell at his feet and, trembling with fear, told him the whole truth. He said to her, “Daughter, your faith has healed you. Go in peace and be freed from your suffering.”

When I read this story I can’t help but relate to the desperation of this woman. There are times that we exhaust ourselves chasing after all the earthly solutions we can think of. We research and do all of the rational things we can find. But it still just isn’t enough.

But it takes those fruitless pursuits to build a strong faith in us. It takes those moments of repeated failures to remind us that sometimes the answer lies simply in believing that God’s power is enough.

As we enter a COVID week I am going to do my best to stay close to the hem of Christ. It is easy to let worry and my imagination distract me, but it takes great discipline to continue to remain in Christ during the scary parts of life.

Please pray with us this week that God’s power is seen yet again in the life of my boys. Pray that we get through these next few weeks unscathed and free from hospital stays and major issues. And pray that God’s peace continues to cover all four of us, reminding us that He has numbered our days we won’t be called home before He’s ready.

Much love,

Leah

Perspective

Our sweet baby Malachi turned 8 this week!

It is hard to believe that 8 years have gone by, but as I reflect on those years I can’t help but realize how blessed we are. More on that in a bit.

We have a strong willed, opinionated, resilient, and kind hearted warrior. He communicates so much to us in his own way, whether it be his sign language cues or his eyes rolling when he is annoyed with me. You never have to wonder what Malachi is thinking…ask and he will guide you to his answer.

In fact, Malachi stayed very very angry with me for most of his birthday, which I felt terrible about. I had told him that we would make the trip down to the Chattanooga zoo to see his jaguar friend for his birthday. Unfortunately the day before the check engine light came on in the van and instead of going to the zoo I had to take it to the car shop to make sure it was road worthy. I explained to Malachi that we would go to the zoo next week, but the disappointment proved to be too great for him to let it go. He stayed angry most of the day, lightening up a bit when dad came home.

We spent his special day unveiling little surprises throughout the day…punch balloons, silly string, decorations, presents, and even a chocolate milkshake. We had some friends come by and bring a very special and thoughtful present for him when he is in his chair. They also brought their dog, which perked up his spirits.

And we spent lots and lots of time on the PLAYGROUND! Yes, it is fully assembled and it has been such a big blessing already in our lives. We weren’t able to leave the house much this week but having the playground right outside gave them an adventure to look forward to every day.

Special needs motherhood is tricky. So many times I have mentally envisioned something that will be “perfect” for Malachi only to have the idea totally flop. Then I have to deal with disappointment and regret, which makes me a bit shy about pursuing other “great” ideas that my mind comes up with. You can’t predict what will work or not work with Malachi until you try it. I was worried that my excitement over the playground idea might prove to not be as amazing as my mind imagined.

But I have been so pleasantly surprised that this playground is proving to be even more amazing for the kids than I ever imagined it would be. Malachi is in his happy place when he is swinging, and seeing the two of them do something together so easily makes my heart swell.

As I watched them on the swing this week I flashed back to a specific meeting with Levi’s doctors where I was talking to them about the visions and goals I have for my children. They were pushing very hard for me to sign off on a trach for Levi, something that would bring a whole new level of complication to our world. I remember explaining through tears that there weren’t many things that they would be able to do independently together, and I wanted to preserve those things as much as possible. I will never forget the blank and cold eyes of the doctors staring back at me when I shared my dreams of them being able to swim together and play together device free.

I couldn’t help but think about how far they have each come in their medical journeys. We aren’t exactly device-free but they can play together free from machines, wires, and cords. I don’t know how many years this machine freedom will last, but I am so thankful that these early years for them are as normal as we can make them. As they were swinging this week together I walked close to push them and Levi held his hand up and said “No, good”, clearly not wanting me to interrupt their special brother time.

We are so thankful to the work crew that helped make the playground come to life. They have spent countless hours preparing the space and assembling it all, and the gift of time is so impactful to our crew. Jake is capable of doing these things, but time with projects takes away respite time for mom and time with the boys. Malachi’s seizures ramped up again this week and many nights I was getting 3 hours of sleep. Jake being able to take them for an hour after work to let me nap is vital to me being able to be caregiver.

After Malachi’s angry birthday day I promised him we would let his birthday extend into next week. We are getting a burst of warm weather and plan to have some friends over to play on the playground. He will also get to go to the zoo on Monday after horse therapy.

We have a busy week ahead with lots of appointments in 2 days between the two of them, but thankfully many of those are scheduled back to back. Each boy will see the neurologist, the cerebral palsy clinic, horse therapy, and virtual feeding therapy. And then we will head back to the hospital again bright and early Tuesday morning to see Malachi’s neurosurgeon to check on his shunt. This is an annual appointment, and I think he is due for some imaging on the shunt (CT or MRI) but I don’t think they will allow Levi in those areas with COVID so we may have to plan those for another day.

Levi had some homework this week from his feeding therapist to try to eat a McDonalds happy meal. We have never had a child that eats typical food so it was the first time I ordered one as a parent. We tried the chicken nuggets and while he enjoyed the taste and taking a bite out of each he wasn’t able to swallow it. But he was very excited about the box of goodies.

Malachi had another fun surprise last night when the neighbor friends brought a guinea pig over to meet him. Malachi can’t control his body very well, but we watched as he focused so hard on opening his fingers and being as gentle as he could be with the animal. It took so much effort for him, but it was truly amazing to see. He was so happy!

Levi has been a very typical three year old this week, swinging the pendulum of toddler emotions. Now that he has playground time in his day, he also has to deal with playground time ending each day when momma says it is time to go inside.

But he is also quick to move on.

This week I have been thinking so much about perspective. We live in an area tucked in the mountains. At the base of the mountain where our house is we may get a dusting of snow, but a 15 minute drive upwards will take you to several inches of it.

As I stared at that snowy mountaintop this week while I basked in the sunshine at the base I thought about perspective and how much it can change with just a few miles. I could call up a friend that lives just a few miles away that could be completely snowed in.

C.S. Lewis has a quote that I love: “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

That mountaintop covered in snow it such a good representation to me about the day Malachi was born. From where I was standing that day I saw tragedy. I was overwhelmed by the circumstances around me and terrified of what I was seeing. I was the “sort of person” that could only see the darkness of the situation and clung to the statistics and facts the doctors were speaking over my son.

But today I am at the base of that mountain and I see what a blessing Malachi has been in our lives. He has changed my faith and challenged my preconceived notions of what a blessing in life truly is. I am the “sort of person” that sees the handiwork of God in even the most destitute situations. Through Malachi I have been given new eyes.

The mountain that we face with Malachi is the same giant mountain. But our journey has taken us to a place where we can look at it from a different perspective and admire it’s beauty instead of focus on it’s daunting presence in our lives. The mountain hasn’t changed, but we sure have.

I have faced an incredible amount of mountains in my life, most of them before Malachi was born. The Bible always talks about our faith having the ability to move mountains and portrays them almost as a negative thing. But God has been showing me over the last 8 years that some mountains are not meant to be moved. Some mountains are part of God’s landscape for our lives and their presence in our lives is meant to be embraced instead of feared, as they remind us of our need for a guide.

Psalm 121

I lift up my eyes to the mountains— where does my help come from?
My help comes from the Lord, the Maker of heaven and earth.

He will not let your foot slip—he who watches over you will not slumber;
indeed, he who watches over Israel will neither slumber nor sleep.

 The Lord watches over you—the Lord is your shade at your right hand;
the sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm— he will watch over your life;
 the Lord will watch over your coming and going both now and forevermore.

I know many of you reading this are facing mountains in your life that you have grown to hate. But maybe it is possible that you are seeing that mountain from the wrong perspective. Continue to pray over that mountain, declare it to be moved. But also continue to pray that, should God choose to not move your mountain, that He gives you a fresh view of it as He plants your feet in a new spot on it.

Today I am thankful for Malachi’s mountains. I am thankful that through this winding, unpredictable journey that we are on we have come to know God on a deeper level…all thanks to a 1 pound 12 ounce baby born without a heartbeat who has never spoken a coherent word.

Happy 8th birthday to our warrior Malachi. And thank you Lord for choosing to share him with the world another year. What a gift you are to the world.

Much love,

Leah

Fingerprints

Hallelujah, Malachi’s seizures have slowed down! He is down to having 2-3 a day and hasn’t been having any at night while he sleeps. The more consistent sleep has done wonders for him, and definitely made a positive impact on mommy.

This week the local group helping prep for Malachi and Levi’s playground was hard at work, which gave the kids some great entertainment. Levi is scared of loud noises and Malachi is fascinated by them. This photo is a pretty good example.

As you can see, the project has changed a bit from the original plan haha! Originally we were going to put the playground tucked into the woods in the side yard. After looking at the site the group suggested they build up an area closer to the house and fashioned this amazing side nook built just for the playset.

After the nook was fashioned they noticed a tree that looked like it might die soon close by and offered to uproot it with the gear they already had onsite, and Jake and I happily agreed. After the tree came up it left a giant 6 foot hole so after lots of dirt moving and graveling we widened the driveway significantly to add parking for our Bible studies. What a hidden blessing we have received!!

I think they are planning on starting the construction of the playground this week, and my boys are so excited. Quality of life is so important to us for our Malachi. Knowing that he can get a few years on a playground built with him in mind before he gets too large to maneuver makes my heart happy. We hold tightly to “typical” recognizing that in a few years it will be harder to attain anything that resembles typical.

We are also very excited about inviting some other local special friends over to use the set! There is a huge difference between handicap accessible and caregiver friendly.

Totally changing gears, during one of our nightly games of baseball Malachi (with daddy’s help) accidentally hit Levi in the eye with the ball.

It swelled shut immediately and we expected a black eye, but it never came. Malachi laughed hysterically, just like a big brother would. And after the initial shock of getting hit, he joined Malachi in the laughter- truly overjoyed to see Malachi so happy.

This sweet photo popped up this week from when Malachi was 2 years old so we recreated it this week at therapy. It is so wild to think that he will be turning 8 this week. What an adventure we have been on! I will save the sappy post for next week’s entry.

We have been working through some red tape with his homeschooling plan for the year. To recap just a bit, we pulled him out of the public school system and enrolled in program that takes the money he is typically given for his public school education and puts it on a debit card to be used for very specific educational expenses. They are extremely strict, and all purchases and services have to be pre-approved. We finally got some green lights this week and are able to get some resources to help with learning! I will share some of those things in the near future with you all, but in summary this was a BIG win for us this week.

And a very special thank you to whomever left an anonymous meal on our porch this week. It was very unexpected and so kind! And kudos in disguising yourself well enough that we couldn’t identify you on the cameras haha!

We are cautious about sharing things with you that will generate negativity, but we have re-opened the basement to start back with our weekly Bible studies. This is a God driven move on our part, and whenever God calls us to do something we do so in boldness and without fear.

The boys stay upstairs with one of us while the other leads the basement Bible study. Jake has a group of men that come on Saturday evenings and we rotate small groups with our youth each Sunday night (middle school, high school, girls, and boys). I am back to cooking for the crew, but instead of cooking for 40 the groups are more like 15-20 teens each week.

In our area things are pretty much business as usual. The kids are back in school (completely maskless). Sports are running without limitations. We are keeping the kids locked down still, and not taking them into public settings. We alternate who goes to church on Sundays and Wednesdays and do our best to socially distance ourselves and mask up. And yes, Jake and I will both be getting the vaccine when it becomes available in our area.

I have started the devotional three times now, each time deleting the section after about 45 minutes of staring at it. They have all felt “Leah driven”, something that I try very hard to stay away from.

So I am going to start typing and we will just see what He wants to write…

This week Malachi and I have been having some good late night talks. With his birthday coming up he likes to hear stories about him as a baby. Unfortunately those stories are hard to tell, and bring up some buried emotions each time I talk to him about it.

One late night this week I was talking to Malachi about miracles, and explaining how God has done so many miracles in his life. The conversation stemmed from an old video we had watched of Levi when he was a baby squeaking with each breath. I told both of the boys that God had given Levi a miracle; He had done something only God can do. When I said that I watched Malachi’s face drop a bit in jealousy. So later that evening we started talking about his miracles.

Each time I told him something that God had done in his life he beamed with pure joy. I loved seeing him so happy, so I kept the miracle list going. We talked about all the things doctors said he would never do, and how God has helped Malachi do so many things that shock the doctors. By the end of our list Malachi was smiling from ear to ear and my heart was feeling warm and full.

I so easily get bogged down by the miracles we still lack. But spending time reflecting on the miracles we have already so graciously been given drew me into the arms of God that night.

We are so blessed. And I am ashamed that some days I don’t see life through that lens.

Let me encourage you to start a list this week. What are things that have happened in your life that only God could do. What are your miracles? I bet your list is larger than you think.

When you take a realistic look at your successes in life you will find God’s fingerprints all over them. Oh, how many times our pride can allow us to miss those fingerprints.

This week we will be celebrating one of God’s masterpieces…Malachi Carroll.

Psalm 139:13-16

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Fearfully and wonderfully made. I hope this week that those words meet your soul where they are needed the most.

Much love,

Leah

Do What Makes You Holy

The theme of the week has unfortunately been seizures. Our sweet Malachi is having a very hard time right now and is having between 8-14 seizures a day. Most of the larger ones are at night and at this point they still seem to be gut related (due to increased secretions/swallowing because of incoming teeth). The nighttime ones have been scaring him so they end with him crying very loudly and it is in turn waking up Levi, who immediately starts crying because brother is upset. This cycle continues all throughout the night and frankly we are exhausted and my spirits have been down.

Malachi has intractable epilepsy (seizures that can’t fully be controlled) and Lennox Gastaut syndrome which means he will continue to develop different seizure types as he grows. Right now he has four different seizures types, all coming from different damaged areas in his brain. Seizures are a symptom of brain damage, and with no was to “fix” his brain they are going to continue to be a large part of Malachi’s life.

There is constantly the lingering worry that something large is causing the seizures, like a shunt malfunction. But in order to get that checked he would need to have a CT scan at the hospital so I want to be certain that the trip would be necessary as it would expose Malachi to a pretty COVID covered place. Pain relievers seem to be making a slight difference which makes me feel like shunt issues are not the culprit.

With Malachi sleeping just 2-4 hours each night, most of our daytime hours are spent in a daze. Thankfully Jake came home on Tuesday evening and was able to help take some night shifts this weekend. I am not going to lie- I have spent most nights this week in tears calling out to God.

Even Levi has been praying for Malachi, as you can see in this sweet video:

Alright, now time to focus on the positives…

Our playground project is coming along well! I think the plan is to actually construct the playset this week and both boys are still giddy with the anticipation.

Speaking of overwhelming joy, here is a video of Levi opening some jeans that his grandma sent him. He has an obsession with blue jeans right now and equates them with getting to leave the house. We only had two pairs of jeans and if they were in the hamper he would meltdown. Grandma came to the rescue and sent a few more pairs.

Malachi has been exhausted but still silly and giggly. We have been playing a few round of baseball with the boys each night before Jake goes to bed.

I have caught little Levi doing Bible studies this week like his mommy and daddy. He pretends to underline and hearing him pretend to read the Bible (even when it is upside down) is so sweet to me. My thoughts keep wandering to his future and what God might have in store for him as he grows into a young man.

I had several comments on last week’s blog about wanting a copy of the small group/family devotional our church recently created. We have found a way to mail them, and I have also created a PDF version if you or your church would like to print your own. It is not the most faith shaking, earth shattering devotional you will ever read but it is a GREAT resource for people who may feel intimidated to start those types of conversations in their homes and social circles. Email me at jacobandleah@gmail.com if you would like one. They are completely free! And if you commented last week and didn’t get my reply send me an email.

As I mentioned before, this has been an emotional week for me. The only way to stop Malachi’s seizures is to help get a burp out of him. It is a very physically taxing process that only gets more difficult the more he grows. When his body is in a seizure he engages every muscle and he becomes insanely strong. If I am holding him during one, my muscles shake with the pressure of keeping him upright and safe. I wake up sore every morning from simply taking care of my child. And that makes me so sad.

But aside from all of that there is a little boy who is scared of his own body. Helping Malachi navigate some of the hard things in his life can be so challenging, as I have to often fake my own fear to calm his. Seeing the fear in his eyes is so very hard. Even he has been dreading the nighttime this week.

I have been explaining to God that I feel so unqualified for this journey. Unqualified in so many ways.

But then He gently reminds me that He looks for the unqualified. Being qualified for something brings pride, arrogance, and self-reliance. Being unqualified brings a sense of humility that keeps me connected to the Vine.

John 15:5-8 “I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing. If you do not remain in me, you are like a branch that is thrown away and withers; such branches are picked up, thrown into the fire and burned. If you remain in me and my words remain in you, ask whatever you wish, and it will be done for you. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples.

But in addition to feeling unqualified, I have been so unhappy. At the risk of sounding selfish, there hasn’t been much in the week that has made me smile. Gosh, reading that sentence makes me feel guilty for even typing it. But transparency with you all is so important to me.

But even in the unhappiness I have been experiencing I have remembered a truth:

Life isn’t full of just happy moments, and it is in some of the more miserable ones that we have the opportunity to truly please the Lord with our heart and our actions.

I don’t know if you are in a dry season like me right now, having to search hard for things to smile about. But if so, let’s try to refocus our thoughts towards things that bring us closer to the Lord. Open your Bible, turn up that praise music in the car, speak aloud to him. Don’t let your unhappiness lead you away from the source of all joy.

I am going to be tackling the book of Daniel in my quiet time over the next two weeks if anyone wants to join me. There are 12 chapters total, so I plan to read one a night for the next two weeks. He is such a good example of remaining unstained by the world, and right now I need those reminders!

Much love,

Leah

Doorway Devotions

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

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

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

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

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

But oh boy, it is difficult!

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

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

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

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

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

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

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

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

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

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

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

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

And lots and lots of temper tantrums.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

An example of some of the questions:

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

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

What earthly thing do you treasure the most and why?

What is something you have had to wait patiently for?

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

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

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

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

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

God bless,

Leah

Love Perseveres

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love is a gift from God.

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

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

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

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

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

Much love,

Leah

Fixing Our Eyes

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

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

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

Levi feeding the dinosaur shredded cheese

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

Levi’s new hand-me-down ride

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Leah

Christmas Shenanigans

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The providence of God is such a beautiful gift.

Much love,

Leah