“I’m so glad I live in a world where there are Octobers.” -Anne of Green Gables by L.M. Montgomery

I am a fall loving gal. There are so many things that I love about this time of year, but one of the main things I enjoy the most is the constant reminder of our amazing God in all the colors. I catch myself praising God more in the fall as I can’t help but notice His handiwork. This week I rolled down my car window and snapped this shot on our road. Not an award winning photo, but just a glimpse at the beauty that helps refocus me each time I leave home.

I am so thankful that there are Octobers.

On the flip side, one of the unwanted things that fall always tends to bring with it is a spike in illnesses. Last week Malachi ran off and on fevers but leveled out by the weekend. I was so thrilled to be through the threat of a serious illness. But this Wednesday rolled around and Levi started acting a bit off. Sure enough a full blown head cold hit him and we passed it around the family, Malachi being the final one to get it.

Malachi does not handle any drainage well and it typically increases his seizures. His brain can’t handle the extra stimulus and it is very hard to shut it off to get him to rest. He has been staying up until 4am each night, wrestling with seizures during the bedtime process, and only sleeps for a few short hours, waking up with yet another seizure. We need these germs to move on so his system can reset a bit.

Caregivers aren’t really allowed to get sick. Of course that isn’t really possible, but we have to pretend like it haha! My coughing at night sparks Malachi’s seizures (the cough surprises him).

I am so thankful that this sickness isn’t impacting his oxygen levels! We have not had to use supplemental O2 at all and his cough assist machine has been incredible at getting his lungs some extra clearance. And Levi handled this cold like a champ. His airway inflames with sickness, bringing his paralyzed cords closer together. I always know he is sick before he tells me due to his noisy breathing. But he back to his normal, silly self.

We spent most of the week at home trying to keep a close watch on everyone’s health. On the nicer days we headed outside for some chores and fun. The boys worked together with the leaf blower to clear the driveway. Malachi held the machine and Levi pulled the trigger.

If you don’t know, changing Levi’s g-tube has become a pretty emotional experience for him. I changed it during his recovery after his last surgery before he woke up from anesthesia, but we are supposed to change them out every three months on both boys. I check the water level in each boy’s balloon each week (the stopper on the end of the g-tube; think of it as the back to an earring) to make sure it is still holding water. Levi’s began losing a bit of water so I have been watching it closely and this week it popped. The process to change it isn’t difficult or painful but the mental and emotional roller coaster is the real deal for him. We had the best change out ever and I was so proud of him! Then by the next morning the new tube popped too and we had to do it all.over.again. It must have been a defective one, but poor little Levi was a mess.

This weekend our church held our 2nd annual Holy Ghost Wiener Roast! This is an event at our friend’s farm that we invited the community to and boy did they show up- several hundred of them. Jake and I were in charge of the event so we spent most of the week doing Walmart pickups to try to gather all the necessary things without going into any stores and sharing our germs with others.

On the big day Malachi had been doing much better and we felt like he would enjoy the adventure out of the house. And he loved every minute of it.

Most of the week I stayed in survival mode, running on very little sleep. Weeks like these can be difficult on my psyche with not a lot of distinction between days and nights. Often the hardest chunk of my day is the midnight to 3-4am one. It is relatively uneventful but the seizures keep me from being able to commit my brain to other things.

Each year I try to come up with fundraisers to help send our teens to youth camp. I despise fundraising in the traditional sense- selling overpriced things that people don’t truly want but feel pressured to purchase. So we try to find something different to offer that people might actually want to purchase that will yield a large profit.

This year we have several projects that we are working on and I have been tackling them during that difficult bedtime chunk in between seizures. I have to be honest- the distraction has been wonderful. The ability to control something….to start something and see it to finish….is something that I crave.

A buddy of ours donated some cedar slabs and I have been cutting them and sanding them down to make hymn plaques. As I worked on this one in the very late hours one evening I couldn’t help but stop and focus on this one.

The longer I worked with this piece the more I connected with it in such profound ways.

There are so many imperfections- the cut, the shape, the splinters. This particular piece broke apart from the other half when I put it in the car, revealing a pink wood flesh that I never knew existed. It was this particular broken board that continued to catch my eye as I looked at the pile of scraps, struck by the beauty in the fresh flesh of brokenness.

The story of this slab of wood is rich, and even though the surface has been sanded flat you can see the remnants of its journey on the edges.

As I sat and stared at this piece I couldn’t help but see our journey in it.

So incredibly and beautifully imperfect. And one of a kind.

We have cracked on the edges, breaking away from dreams we once clung to. We have been broken in so many ways, revealing things deep within us that we didn’t know existed. And as painful as those breaks can be they took the piece from weak and fragile to incredibly strong. Watching God bring His strength into our family has been such a gift.

As I worked with this piece I came to the realization that this one was not meant to leave our home. And as I tried to choose a hymn to put on it I easily settled on this one. Although this is not scripture, there are so many spiritual truths within it.

The song “It is Well with My Soul” was written by Horatio Spafford in the late 1800s. Horatio lost his four year old son to sickness, which alone is such a tragedy. Two years later he sent his wife and four daughters on a trip, intending to meet them there at a later time. That ship hit another vessel and 226 passengers lost their lives, including all four of his daughters. His wife survived and sent him a telegram with the words “Saved alone”. Shortly after, Horatio wrote this famous song.

My favorite line from the song:

“Whatever my lot, Thou hast taught me to say, it is well, it is well with my soul.”

Our circumstances are ever changing in this life. But a soul truly rooted in Christ cannot be shaken.

Please pray for Malachi, that he will be able to bounce back quickly and level out to his baseline. Recovery from the common cold has been taking at least two weeks for him and I know that process wears out his little body. And please pray that I am able to keep my eyes focused on God through the harder moments in our week.

Much love,

Leah

The original intent of this blog was to provide a place for me to dump my emotions, thoughts, and feelings. Transparency is always a priority to me, even though it is often hard for me to lower down my walls enough to be vulnerable. I know that there are so many others out there that are dealing with similar struggles. That being said, let’s talk about caregiver burnout.

For a quick definition and signs of caregiver burnout, the Cleveland Clinic does an excellent job summarizing: https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout

Over the last few weeks I have felt like I am in a survival mode of sorts, trying to just navigate through each 24 hour chunk. There is a level of monotony that plays with my brain a bit, and even though I can control the “in-between” there is a consistent routine to each day that must be followed to the letter.

I go through phases where I feel, for lack of a better word, trapped. In an effort to fight the monotony of what I cannot control I try to over-control the in-between with lots of busyness. And the result is that I am exhausted and still cannot influence the routine. And even though these distractions leave me unfulfilled the mental break they provide are so welcomed!

I am there right now. Trapped in a world controlled by seizures, medications, appointments, therapies. While writing the first two paragraphs of this entry I have had to stop 4 different times for seizure intervention. I am so emotionally and physically exhausted. But I long for interaction outside of the medical world and routines that I am in.

And the interesting part of caregiver burnout is it has a lovely little cousin that often tags along called “caregiver guilt”. Caregiver guilt is a feeling of inadequacy. You feel like you are not doing as much as you should, and then judge yourself for apparent inadequacies. (Caregiver guilt can manifest itself in the forms of exhaustion, pushing yourself too hard, negative self-talk, anxiety, and other negative emotions.) I am very aware that I am not able to give 100% to anything right now…basic parenting, homeschooling, contributing to finances, marriage, friendships, home therapies, etc.

This is definitely a leaning on the everlasting arms phase as I look to God for a strength I just can’t seem to muster.

Enough about me, let’s talk about my miracle boys and their antics.

Malachi started his mysterious fevers again, coming and going throughout the second half of the week. These fevers are hard to navigate as we often put life on hold to make certain we aren’t going to infect others with sickness. But Malachi’s symptoms never manifested and the fever finally went away!

Levi doesn’t handle these long spells at home very well, ready and eager to burn some energy. We do what we can with time on the playground and random drives around town. Jake took him to a local football game which was such a treat! And wore him out!

When Malachi perked back up we did a quick fishing adventure, Jake ending up in the pond (much to Malachi’s delight) but reeling in a big one so he says it was worth it.

Levi has been preaching a lot lately, flipping over laundry baskets and reading from his Bible with animated gestures. It makes Malachi and I smile every time.

And all three boys are still thoroughly enjoying their airplane.

I took the teens up a local mountain for worship this afternoon (Jake stayed home on dad duty) and the fresh air was what my soul needed. Not to mention the breathtaking scenery.

Jake and I used to hike this mountain on weekends in college and getting the opportunity to go back up there always sparks memories from those fun, carefree days. I am so thankful for those memories and that Jake and I’s story is such an intricate one.

As I looked at the beautiful leaves on the trees around me I couldn’t help but admire their vibrant colors and beauty. But the more I thought about the leaves the more I realized that they were just in the process of dying.

I thought about the seasons of life we have gone through and have yet to go through, and how some of them are filled with such pleasant memories, and some are filled with such deep rooted pain. I saw myself in these leaves today as lately I have physically and emotionally struggled to accept the demands of the season changes in our life lately.

But with the death of the old comes new growth. God is a refining God, continually looking for opportunities to encourage us to look a little more like Him.

Hebrews 12:11-13 “All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. Therefore, strengthen the hands that are weak and the knees that are feeble, and make straight paths for your feet, so that the limb which is lame may not be put out of joint, but rather be healed.”

As painful as it may feel, I am so incredibly thankful for the refining that I am experiencing. God is bringing me to a new season, and that involves the death of the old. I am looking forward to the peaceful fruit when this training period is complete!

And until then, the prayer from this verse is very much like the prayer of my heart: “strengthen the hands that are week and the knees that are feebly, and make straight the paths for your feet, so that the limb which is lame may not be put out of joint, but rather be healed.”

Much love,

Leah

WHEW what a week we have had.

On Sunday afternoon I managed to contract some food poisoning from our takeout at a local restaurant. After one bite I knew the meat had gone bad but apparently one bite was all it took. The rest of the week my body was under attack, running fevers of 102 when I attempted to eat and losing all of my strength and mental clarity.

Wednesday rolled around and when I woke up I felt decent enough to attempt the Vanderbilt trip with the kids. I was able to keep some bread down so we hit the road and made the three hour trip there without issues.

Malachi got a fresh set of X-rays to check his spine positioning and then we met with both surgeons. I cannot emphasize how much we love and admire his orthopedic surgeon, Dr. Schoenecker. He sat down on his stool and wheeled right up to Malachi’s line of vision to talk directly to him. He is the only doctor that Malachi has ever had that has addressed him and spoken to him.

Ugh, typing that made tears fall down my cheeks. Tears of empathy for my sweet Malachi who simply wants to be “seen”. What an isolating world he has to experience each and every day.

Malachi’s heel cord is being told by his brain to pull tighter which is pulling his feet outwards and up. The solution would be surgery to release that cord but this issue is a symptom of the damage inside his brain and would eventually just pull tight again. So we are pushing off the surgery until it is absolutely necessary. Malachi doesn’t seem to be in pain from this issue and we can still get his foot into his braces so we will continue to annually evaluate where we are at with that issue.

Malachi’s hips are still very much out of socket, but they do not seem to be causing pain so we are continuing to leave them. This particular surgeon always has a shadow (resident, NP, etc) with him and they are always fascinated by how out of socket his hips are. It really is mesmerizing in a grotesque way on X-ray.

After meeting with that surgeon we met with Malachi’s new spine surgeon to talk about his scoliosis. Malachi is so floppy that getting accurate spine X-rays is difficult. The spine curve is still very much present but doesn’t seem to be causing many issues at this point. We will continue to watch this curvature closely, particularly around growth spurts as it starts to get more fixed.

The surgeon said that he expects that Malachi will require a pretty massive spine surgery in his future to attach telescoping metal rods to his spine. I am terrified of this surgery. The surgery itself is not what frightens me, but it is the recovery process. When I shared this fear with the doctor this week he affirmed it saying that there is a 3-5% death rate with this procedure from complications during recovery.

We hit the road to start the three hour drive home and I was still feeling energetic and ready to tackle the task. But as we continued my strength started to drain from me so I stopped to try to get some food in me. My body went into panic with the food and with 1.5 hours left in the drive I suddenly spiked another 102 fever as my body fought vomiting the food up. By the time we made it home I was too weak to lift Malachi. But by morning I was relatively back to normal again.

On the miserable drive home I was quickly reminded why I often make this a two day adventure! But truthfully, the kids do great. Levi doesn’t usually join us for Vanderbilt so he felt like it was a real adventure. And Malachi traveled so well, only having one small seizure in his car seat.

The boys got to enjoy a mid October swim with friends early this week.

On Saturday we met up with our Chick-Fil-A friends from Malachi’s famous Facebook post in 2017 (Here is the link if you haven’t seen this sweet video: https://youtu.be/_FqXgxnfzd4 ) We try to meet up with them periodically and they happened to have a soccer game within a 25 minute drive!

We are thick into soccer world right now, taking our team to the district tournament last week and regional tournament this week. Malachi and Levi absolutely love going to the games. They have grown up as coach’s kids and genuinely enjoy being sideline.

This week one particular game started to grow tense and the emotions were tangible. He said “I think we need to pray.” I love that his default to a tense situation is to stop and take it to God.

He has been saying some pretty funny things lately. A few days ago he flatly told me that I was old. Not as a derogatory thing, but simply a fact in his eyes. I asked him how old he thought I was and he replied “You’re like twenty and a pound”. Sounds pretty young to me!

Jake and I have been having some pretty serious conversations about Levi’s near future with education. We have been praying hard for some clarity on what is in his best interest on all fronts. On paper he is extremely medically complex and has one of the worst possible brain damage diagnoses a child can get, but 15 minutes with him and you would have a hard time spotting any deficits. God is so good.

And Levi is just a few weeks shy of being 1 year seizure free!

As you can probably tell, this week was a challenging one for me. Physically, emotionally, and especially psychologically. Our nighttime is always challenging but for the last week Malachi has consistently had a seizure within 15 minutes of me laying him down for the night. His brain locks into these routines and he sticks with them for awhile. When his seizure hits I have to pick him back up to try to help him burp to end it. He contorts so much that he smashes his face into the pillow cutting off his air supply.

I usually lay down next to him and pray that the night will be different, allowing myself to drift to sleep while holding his hand. My exhaustion level was so high this week that I was afraid I would miss this seizure if I let my head hit the pillow, so instead I just sat next to him and waited. And as I sat in the darkness, simply waiting for his body to start convulsing I felt so many emotions.

I have talked so many times before about the fiery furnace from the Bible and how our story of our moments in the furnace are a testament to God’s protection. But as I sat and waited for the seizure to hit I had a fleeting realization that I am not sure that we left the furnace. It feels like we are still amidst the flames, waiting on that door to open.

There are quieter moments but the flames are still an arms reach away, continually threatening the peaceful moments we try to stay focused on. We are one bad seizure away from heartache. We are one missed moment away from death. The heaviness of that is sometimes very hard to ignore. And living on edge doesn’t always feel like living.

But I can tell you this. That even though we are still actively in our furnace, God is still very present. And He continues to keep our clothes unsinged, our hair untouched, and the smoke from permeating our clothes.

God doesn’t always remove us from the furnace, but He will always join us in it and make the heat miraculously undamaging. I pray that I, myself, will always remember the beautiful protection the Father has given to our family.

Please pray for continued strength for us on the harder days, and wisdom for the every day. My faith is not wavering, but my human body is and it has made me process the future a little more realistically this week.

Much love,

Leah

Fall break came and went like a thief in the night! Jake had the week off and spent the first half of it with family in Ohio. It is really difficult to travel as a family and be able to relax and connect with others when we arrive at our destination. Medical care away from home takes a lot of forethought and worst case scenario prepping. So we decided Jake would take a solo trip this time and spend time with his parents.

The boys and I hunkered down for most of the week, attempting to get Malachi back to his baseline. We left for therapies, errands, and a lunch date (they love “buying my lunch”) to a local place that exclusively sells chicken salad, one of Levi’s favorite meals. Our plate came with a pickle so I thought I would let Malachi get a taste of the juice. His first taste was successful and he signed more so I brought the pickle back up for round two. But sneaky Malachi chomped down and bit the pickle spear like an alligator, flooding his mouth with sour juice and the shock of it made him clamp down even harder. I went from a smiling, doting momma to a crazy, panicking lady trying to pry open the mouth of my wheelchair bound son. Nothing like a little pickle drama!

We spent time outside, enjoying the fall weather and playing on the playground.

And lots of time playing with the puppies. Both boys love playing with the dogs, and they are such gentle giants.

This week the boys and I will head to Vanderbilt for an appointment day for Malachi. I am going to attempt to take both of them, as it is an all day event…three hours each way and at least two hours for both surgeon appointments and X-rays. Please pray with me for my energy and clarity of mind. Sleep has been very rare this week and Malachi’s nighttime seizures have been frequent. Full moon weeks are very rough for epilepsy.

The boys also have a few other appointments sprinkled throughout the week; I call this a “thinking” week- a week that requires my brain to be fully engaged.

This life requires a lot of things from me that I simply don’t possess. This is a blessing, as it requires me to continually lean on God for His strength.

But sometimes my mind has a hard time seeing our everyday as a blessing. This week I have had several of those negative moments, feeling like a marionette puppet and not having much control over my world. It takes such an intentional effort to continue to see our calling through the eyes and purposes of God.

This week I spent a lot of time in the Word, trying to chase off my negative thoughts with scriptural truths. And I read a verse that has really challenged me that I thought I would share with you.

2 Peter 1:5-10 “Now for this very reason also, applying all diligence, in your faith supply moral excellence, and in your moral excellence, knowledge, and in your knowledge, self-control, and in your self-control, perseverance, and in your perseverance, godliness, and in your godliness, brotherly kindness, and in your brotherly kindness, love. For if these qualities are yours and are increasing, they do not make you useless nor unproductive in the true knowledge of our Lord Jesus Christ. For the one who lacks these qualities is blind or short-sighted, having forgotten his purification from his former sins. Therefore, brothers and sisters, be all the more diligent to make certain about His calling and choice of you; for as long as you practice these things, you will never stumble;”

As I read this scripture I found myself treating it like a report card of sorts, self evaluating on each of the qualities listed. And I most definitely found myself lacking in many of them if I am being perfectly honest.

But the part of the verse that stuck out to me the most was verse 8 “For if these qualities are yours and are increasing they do not make you useless nor unproductive in the true knowledge of our Lord Jesus Christ.”

It isn’t enough to simply possess these qualities. We are called to be continually increasing in them.

We are called to never settle and to constantly strive to practice these things, knowing that we are never meant to truly master them.

And that word, “diligence”. Making an energetic effort to pursuing these qualities of Christ. What a much needed remind to me this week that I am never meant to fully possess these things but honor God in my practicing of them. Our efforts in that striving are such a gift to God.

Please pray for strength this week. My body and brain are just so tired. I need a rejuvenation from God and a fresh strength.

Much love,

Leah

Our sweet Malachi fought fevers all week long, sometimes running up to 102 and sometimes dropping down to 97. Usually when this range happens it is a symptom of his brain damage, particularly the part that controls his temperature regulation. He still didn’t have any other symptoms and he had just finished up a two week round of antibiotics so I was skeptical we were dealing with infection. His oxygen levels were also staying strong so lung infection was pretty low on the probability list.

But then the mom brain kicked in and I started the what if game. And when you have a non-verbal kid it makes it truly a guessing game.

What if this is a shunt malfunction? Malachi is crushing the statistics for kids with VP shunts, never having a malfunction in over 9 years. If this is a malfunction we need to go into emergency brain surgery.

What if this is a simple ear infection and he can’t tell me that his ears hurt?

What if this is a urinary tract infection from all the diarrhea we have been dealing with for the last several weeks?

What if this is CDIFF, a common infection that can happen after a round of antibiotics on immunocompromised kids like Malachi?

The closer we inched to the weekend the more I started envisioning the “what if” game turning into a weekend emergency room visit. So on Thursday I took him in to see the pediatrician and see if we could rule out some things on my list.

Final result: Malachi has rhinovirus/enterovirus which appears as a very mild common cold to some but can show up in stronger ways with medically complex kids. Truthfully, this was really good news compared to the other options on the list.

Malachi’s fever has finally stopped but he did require some nighttime supplemental oxygen this weekend to keep his numbers up. The older Malachi gets the more impact these relatively minor things have on his body. This has been really hard for me to mentally accept, and I have to work very hard at holding every thought captive. I can spiral pretty quickly into a dark place when I focus on it too much.

With the many unknowns this week we stayed close to home, playing lots of make believe and attempting more homeschool.

Levi has been a sweetheart this week and has started preparing snacks for he and I to eat before we start our lessons for the day. He calls it our “homeschool snack” and he puts on his “homeschool pants” as well. Not really sure where that one came from, but it makes me laugh.

Both boys have been making me laugh a lot lately. Watching them grow is such a blessing.

This morning we sang a hymn at church titled “Great is Thy Faithfulness”. It was written in the late 1800s and the author used Lamentation 3:22-24 as his guide for the words.

As my walk with God has grown over the last few decades so has my list of adjectives for Him. Yes, I can say that God is faithful but I have never taken time to really think through what His faithfulness specifically looks like in my story.

He has been faithful to provide time and time again: financially, physically, emotionally.

He has been faithful to give me portions of His peace, allowing His strength to fill the gaps when mine is not enough.

He has been faithful to grant me wisdom in the care of my children.

He has been faithful to bring me new mercies each and every day.

He has been faithful to catch me each time I trip and fall.

And the more I think about moments of His faithfulness and His consistency in my life and my walk with Him the more thankful my heart becomes.

In my world of chaos I can fully trust that God will still be faithful and very present.

Psalm 91:4 “He will cover you with His pinions, and under His wings you may take refuge; His faithfulness is a shield and wall.”

I love the visual of His faithfulness being a shield and a wall. It is something that is so tangible in my walk with Him that I can carry it with me and use it as a line of defense against the mental attacks that inevitably come.

It is a wall that the devil has to try to scale before he can plant a seed of doubt.

I am so thankful for the beautiful gift of the faithfulness of God.

And I find myself really questioning if God is able to say the same about my faithfulness to Him? Am I reliable in our relationship?

This week I am thanking God for His faithfulness and provision in my life. What an act of love from my Father!

God bless,

Leah