Hope

I am going a bit cross eyed staring at the screen tonight so please ignore my grammar errors and crazy thought trails. We just pulled in the driveway after an adventure filled trip to Ohio!

Sickness in our small town is so rampant that they closed the school system last Monday. With this bit of information and an upcoming trip we decided to hunker down and try to dodge germs. I kept the boys at the house most of the week, even canceling therapies as the boys weren’t 100% yet. Our lock down paid off and on Thursday the kids and I headed north. Jake had to work and we do all that we can to preserve his days off for long term hospital stays and surgeries.

But we did get haircuts for the boys. They were long overdue, so I did a before and after for you.

Both of the boys were giddy with excitement as we pulled onto the highway for the 6 hour drive! When we finally made it to Skyline Chili (one of our favorite hometown restaurants) Malachi and Levi were all smiles, knowing we were almost to our destination.

As we passed the hospital I used the moment as an opportunity to remind Levi that not all Ohio trips equal surgery. Here is how that conversation went.

Me: “Wave to the hospital Levi! You don’t have to have any surgeries this trip!”

Levi: “Will my surgeons be sad that they won’t see me?”

Me: “No, they have other little kids that they will be helping.”

Levi: “I feel so sad for those other little kids that have to have surgery.”

Sweet little boy. Such empathy for others.

If I am being honest, I was pretty anxious about this trip. Knowing that there was a great potential that we could arrive in Ohio and then manifest some crazy sickness made me pack a bit differently. I loaded up lots of worst case scenario machines (oxygen concentrator, pulse ox, etc) just in case. Thinking through all of the smaller items that need to also be packed can get overwhelming…tape, cannulas, sensor strips, gtube extensions, formulas, feeding bags, ice packs, bottles, medications, syringes, diapers, and so much more. And so many of our things are specialized so running by the store to pick up what we forget just isn’t an option.

We arrived around bedtime Thursday night and tried to get settled. My dad has a guest room in his basement that is set up perfectly for a special needs situation; there is a sink and a fridge in the room off the guest room. I started by stripping the bed and putting a waterproof picnic blanket underneath in case we had a feeding tube incident, which sure enough we did! That night I fed the bed (the formula poured out of the sides of the extension instead of making it into his belly, but thankfully the waterproof blanket kept it from ruining their mattress.

Our days were filled with lots of family visits. Both Jake and I are originally from Ohio and most of our family has remained there. So we were able to visit all parents, grandparents, great grandparents, several cousins, and so many more thanks to my cousin’s wedding on Saturday!

Levi is so impressed that great-grandma has an elevator in her house (assisted living facility).

Both boys did so well at the wedding, staying polite and quiet during the ceremony and adapting well in the reception. The music started and Malachi started to get a bit uncomfortable and we knew it was time to quietly step out. His little brain was on overload and usually that leads to a large seizure.

Malachi was caught off guard by how many people at the wedding knew him. It was held at a church that fervently prays for Malachi so several people came up to him saying “Is THAT Malachi?” Watching his little grin made me so happy. He felt like a celebrity.

They loved the idea that they were my wedding dates for the night. It was the first time they have been to a wedding and Levi’s narrative made me smile. He kept asking “Is it time for the wedding yet?” All throughout the ceremony. On that note, the concept of a wedding is hard to explain to a child haha. Malachi did great through most of the night but started to get a little overstimulated after a few hours so we had to sneak out.

Little Levi turns 5 years old today (Monday)! He woke up around 3am singing “Happy birthday to me” then drifted back off to sleep. While we were in Ohio he was able to celebrate with family. Jake and I don’t do formal traditions for birthdays so even the concept of blowing out a candle was new to him.

He also got to try a donut for the first time! And Malachi got to try tasting snow after a surprise dusting.

Our trip was wonderful and we all had such a nice time seeing faces we hadn’t seen in a long time.

It also was a reminder for me in many ways about the reality of the limitations our world is going to bring in the near future. Lifting Malachi up and down for four days solo took a toll on my body. The bigger he gets the more difficult adventures like these become. It also was a reminder about how limited we are by medical schedules. All of our adventures had to be planned around feeds and medication times.

These thoughts spiral me into a sense of mourning, knowing that Malachi absolutely loves these adventures but my ability to provide him with these trips is limited. Malachi was a rockstar, trying so hard to keep things easy on me. He has the ability to hold his bladder and his poop (something we discovered this year in the process of potty training Levi) so before we go into an environment that will be hard to change a diaper in I ask him to empty himself so he can hold it.

Romans 8:18-21;24-25 “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God….For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.”

If I am being perfectly honest, the reality checks from this weekend spurred some unexpected grief in my soul. Whenever that spark hits my lens in which I view everything follows the flame and tries to take over my mind. I had one moment this weekend where the frustration of reality caught up with me and I felt my eyes fill with tears. In our world in Tennessee we are able to feel like our day to day is normal. But when I am in new environments surrounded by typical it highlights how abnormal and complicated our world truly is. I don’t know how to explain it. It is almost like the typical reminds me of what we have truly lost…things I didn’t even know to mourn over are now brought to light.

In that moment I prayed for God’s peace and He immediately reminded me of the word “hope”.

As hard as this life and calling is, we have been given a gift of anticipation and hope in measures that others don’t get. The things that others celebrate here on earth we will have the treasured gift of celebrating in heaven with our Creator. This verse above talks about waiting in eager expectation and I can absolutely assure you that I am in that camp!

And this verse about creation being “subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.”

Wow. What a powerful verse and a much needed remind about the role of hope in faith. And how important patience is in our walk with the Lord.

Thank you God for the gift of hope. It is the fuel that kept me going this weekend as I thought about all the many “firsts” my Malachi has to look forward to in heaven. And I am thankful for an imagination that let’s me picture that sweet smile on his face as he stands boldly at the throne of God.

Much love,

Leah

Clothe in Humility

We tried hard to escape the head cold germs from last week but they came ready for round two. We had a very special needs night that has made me laugh due to the sheer ridiculousness of it, so I thought I would share it with you.

On Wednesday evening Levi was a bit more emotional than normal so my suspicions were up that something new was brewing. He had fully recovered from the cold but looked to be getting sick again. In addition to looking rough, his stridor (noisy breathing) at night was loud enough to hear from across the house, which is a sign that his airway is cramped (swollen or excess drainage being the cause).

As so many of our adventures do, this one requires a bit of a snapshot into our world. For the last several years we have had unconventional sleeping arrangements after a scary incident with Malachi being in a bed by himself. Jake sleeps in the master bedroom and I am in another bedroom with a bed with a firm mattress that doesn’t shake with movement for Malachi and I to share.

Malachi’s seizure activity at night makes us extremely uncomfortable leaving him alone. He can’t sleep on his back due to his reflux issues and his inability to clear vomit should he throw up in that position. So each night I position him very specifically and make sure a part of my body is touching his so I can feel if he seizes at night. When Malachi seizes he has incredible strength and contorts to the right. Each night he has at least two seizures like this, requiring me to rescue him by pulling his head out of the pillow until the seizure stops. I took a picture for Jake a few weeks back when Levi and I were heading to Cincinnati for surgery to help him understand the new sleep concerns.

Malachi is 9 years old but we have to maintain the vigilance of having a newborn since his body can’t escape the dangerous situations he gets himself into.

Also in that bedroom is a twin bed with sides to keep Levi contained while he sleeps since he is hooked up to his feeding pump at night. There are nights that I am convinced that the feeding pump is my arch nemesis, alarming for kinks in the tubing more than 6 times some nights this week. Levi is a wiggle worm when he sleeps.

That night I was able to get Malachi into the bed by 2am, something that I haven’t been able to successfully do for several weeks. I was relishing in my small victory as my head hit the pillow and my eyes closed. Within thirty minutes Levi abruptly sat up screaming “I don’t want to go to the doctor!”. I was desperately trying to quiet him down before he woke up Malachi and when I asked him what was wrong he said that his ear was hurting. When Levi gets worked up his narrow airway gags him and he starts heaving, ready to vomit.

You must be reading this thinking, I thought she said this was laughable and none of this is funny. Patience my friends.

I needed to go pull Motrin for Levi but didn’t want to unhook his feeding pump to bring him with me. He was begging to lay in “the big bed next to Malachi” so I put him and his feed bag in the big bed and turned on the Waltons for him, one of his favorite shows. I ran to grab Motrin and a water flush and ran back in and medicated Levi through his gtube. This is a process mid-feed with lots of thinking but I finally got him medicated and somewhat calmed down. I then slid into the bed between him and Malachi, trying to keep everyone in a sleepy state.

I took a deep victorious breath, so happy to have my head hit a pillow again when I suddenly felt a warm liquid seeping through my clothing. I sat up and realizing that I was laying in a puddle of pee. Levi in his emotional panic had wet the bed, peeing all over the blankets AND somehow peeing all over Malachi’s pillow. I watched in horror as the liquid inched closer to Malachi’s hair, stopping with about two inches to spare. And by some miracle Malachi was still sound asleep.

So I made the executive decision that we would all just sleep in the pee puddle and figure it out the next morning. It was a long night, but Levi slept for a few hours. The next day I took him to the doctor and sure enough, he did have an ear infection. We started antibiotics and he is not 100% yet but getting there.

Levi was an emotional ball of nerves as we drove to the doctor. His medical PTSD kicked into high gear when we pulled into the parking lot and he started shaking uncontrollably. The pediatrician office that we use is so accommodating for our family and agreed to bring the doctor out to the parking lot so that I wouldn’t have to unpack Malachi and take him into a very germs environment and also to accommodate Levi’s anxiousness. Levi’s physical reaction to the doctor is so pitiful to see. We had gone through every detail of what to expect but as soon as he sees scrubs he loses his mind. Bless his little heart.

Malachi is still recovering from last week’s cold as well, trying to manage the post-cold cough that is lingering. With his system being a tiny bit off he has been running low grade fevers on and off throughout the week; this is pretty par for the course for him. But his oxygen levels have been GREAT and he hasn’t required any supplemental O2.

We spent the week knocking out chores at the house and trying to heal. And Levi preached some more sermons, of course.

If everyone can get healthy enough this week, the boys and I are going to attempt a trip to Ohio to see family and attend a wedding! I am sure it will be quite the adventure. We have been really wanting to do some fun Ohio trips so that Levi doesn’t always associate the state with surgery and pain.

We have been seeking God a lot lately on so many different things. It is almost overwhelming to think about the many things that we are mentally processing right now.

One of those things is schooling for Levi. There is a local grant that is willing to help fund a portion of his tuition at a small school in our area and we are considering enrolling him after Christmas for a variety of reasons.

1) Levi needs some autonomy. He needs something that is his. He is learning so many incredible lessons and such empathy from living with an amazing brother like Malachi; I think independence and personalized attention will be really good for him.

2) I am told to expect learning deficits from Levi due to his brain damage. Little known fact, Levi and Malachi share the same brain damage diagnosis called Hypoxic Ischemic Encephalopathy (HIE) and are complete opposite ends of the spectrum of that diagnosis. I firmly believe that Levi can learn if he is given the right environment that sees his potential.

3) As much as I would love to homeschool Levi, I don’t know that I am the person for that job right now. I am stretched so thin and dealing with so much mom guilt about not being able to give 100% to each of the things that beckon me.

This is still something we are actively praying about and seeking God on. But part of that process was touring the school this week. Levi was smitten and anxious all at the same time. This particular school has a very small class size and has accommodations in place for students that need a little extra help without the government incentives for special education. Just for some perspective, a student with Malachi’s level of complexity brings $7,500 from the government for his services in the public education setting. That money goes into a generic special education account for the county and isn’t always used for him specifically. This particular school that we toured seemed ready and willing to work through his complexities, like the feeding tube, physical restrictions, and his seizures.

This has been a season of life where I have been praying about very specific things but not getting specific direction from God. But in God’s amazing way He has been guiding me through several truths from His Word as I wait patiently (or impatiently sometimes) on that direction.

One of the things He continues to press on my heart is a call to clothe myself in humility. As I have been studying scripture this week I read one that has made me really think about the concept of humility.

Deuteronomy 8:2-3 “Remember how the Lord your God led you all the way in the wilderness these forty years, to humble and test you in order to know what was in your heart, whether or not you would keep his commands. He humbled you, causing you to hunger and then feeding you with manna, which neither you nor your ancestors had known, to teach you that man does not live on bread alone but on every word that comes from the mouth of the Lord. Your clothes did not wear out and your feet did not swell during these forty years. Know then in your heart that as a man disciplines his son, so the Lord your God disciplines you.”

I often get frustrated when I am not getting a clear direction form God, which highlights my need for humility. I operate like my timeline should be God’s timeline, which is a very arrogant stance to take with my Creator.

This verse is referencing the Israelites who left Egypt and spent 40 years wandering in the desert before God led them to the promised land. Talk about a season of waiting! But the purpose was “to humble you and test you in order to know what was in your heart, whether or not you would keep his commands.”

Seasons of waiting absolutely reveal what it truly in our heart. These seasons test our faith, our obedience, and our desire to give Lordship to Him. Our uncomfortableness highlights our true inner thoughts.

The literal bread from heaven (manna) sustained the Israelites each morning and each night. And in the same way, God sometimes gives us just what we need to get through the next few hours, including His wisdom and direction. And my frustration that stems from not having an abundance highlights my need for humility. He is God and I am not, and my impatience is revealing my heart.

But I also love the reminder at the end of the verse that the Israelites clothes did not wear out and their feet did not swell. Even in their moments of discipline God was still so good!

I am rambling now! I made the mistake of saving the devotional thought for the morning and all chaos has ensued. Levi has thrown up four times this morning and has had some other drama that antibiotics can often bring on. He is feeling crummy so I am going to sign off of here and snuggle up next to my sweet boy and listen to the rain.

Please remember both boys in your prayers this week, that we can return to full health. And pray for my patience as I wait on the Lord, cultivating a heart of humility in the process.

Much love,

Leah

It Is Well

“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

Seasons Change

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

Twenty & a Pound

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

Increasing

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

Great Is Thy Faithfulness

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

Toil

As predicted, Malachi’s antibiotics required us to stay close to home this week. We spent a lot of our time enjoying the new fall weather and taking some flights on the new airplane.

I am not quite sure how it is possible for a special needs momma with the level of complexities in our home to ever hold a job/career. The amount of daily responsibilities and routines to keep them in good health is getting more intricate each year and changes so often. In just three hours Malachi required 8 diaper changes! Each time I am required to glove up and the process to change it takes about eight minutes from start to finish with these meds on board.

The bigger Malachi gets the more my body is feeling the frequent handling that has to be done. It has sparked my brain into planner mode, trying to figure out the best next step for equipment to help care for Malachi.

Malachi and I are very thankful that tomorrow is our final day on these antibiotics!

To add to the chaos, Levi started running a fever midweek that ran for about 3 days. He finished it up in time for Malachi’s fever to start. Malachi’s is still low grade but thankfully there are no other symptoms for either boy. When Malachi gets sick his seizures either amp up in frequency or lessen, and thankfully he hasn’t been having many large seizures!

Levi has been in full play mode with Malachi and has been extra inclusive this week. Their interactions have been unprompted and just so sweet to watch. We have been playing post office a lot and here Levi was trying to help Malachi write a letter.

We also had some visitors stop by this early this morning around 2:30am! I was still awake with Malachi so I was able to watch them through the kitchen window and get a close up. These are actually the first bears to stop by the front porch since we brought home the dogs last year. It was a big momma and two cubs.

I always try to be transparent on the blog, and I have to admit that I am exhausted. There are weeks that the lack of sleep alone leads to exhaustion, but then there are weeks like this one that are a combination exhaustion of lack of sleep and the mental energy each day requires.

This week I read a verse in 1 Corinthians 15:58 and the Holy Spirit prompted me to dwell on it’s words a little more than normal.

”Therefore, my beloved brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord.”

Toil. What a perfect word for this week. And it is very easy for me to sit here and whine about that toil and all the ways it affected me. See above paragraphs haha.

But when we are working within our calling, and we are working in the strength of the Lord instead of our own, our toil is never in vain. God can use the meager rations of our efforts and pure motives and fulfill such a great work through them.

When I allow my mind to entertain the idea that my toil is done in vain then I make this life about me and my wants instead of being Christ to these boys. It is natural to grow weary in doing good when we expect rewards and affirmations from our actions.

This week my mind is focusing on those commands from the verse: be steadfast, immovable, always abounding in the work of the Lord.

Please pray against fevers and new sickness in our home. Malachi has his Vanderbilt appointments in about two weeks and it is almost comical how many times we have attempted to reschedule these due to sickness.

Much love,

Leah

Sinking

Early Monday morning the boys and I headed to the children’s hospital for their routine appointments with the pulmonologist. I checked Malachi’s oxygen before we loaded up for the day and he was hanging around 94, relatively close to his baseline so I was certain we wouldn’t cause chaos like we have the last two appointments. Just in case I loaded in the portable oxygen concentrator, pulse ox, and cough assist machine.

We started with Levi and shared his updates from Cincinnati. Levi also has a pulmonologist and ENT surgeon team in Ohio but this doc is our local point of contact. Then we moved on to Malachi. I explained that he had been struggling with sickness for the last several weeks and when he listened to Malachi’s lungs he was a bit concerned that some pneumonia was brewing. He sent us for chest x-rays which came back hazy but not indicative of pneumonia.

He started Malachi on a 14 day course on antibiotics to help clear out his lungs a bit. Malachi on non-maintenance antibiotics is a digestive nightmare. I could go into details here, but I think I will just let you use your imagination. While we finish up these antibiotics we will be staying close to home so I can have a place to change him frequently and potentially do wardrobe changes for both of us when needed….which is very often. He could definitely use a lot of prayers for his discomfort right now.

But those smiles are back this week, and I am so thankful for them.

Now back to hospital day.

After Malachi’s chest x-ray we had been at the hopsital for several unexpected hours and missed our next round of appointments 35 minutes away. I rescheduled those to Wednesday and figured since we were there anyway I might as well knock out Levi’s blood re-draw for the neurologist. His sodium levels have been low and he called a few weeks ago asking us to get new labs done when we were at the hopsital next.

Getting blood from Levi is always a challenge with his medical trauma but this time was absolute chaos. We had to wait in the waiting room of the lab for a bit and his little mind began to escalate; pretty soon he was in full fledged panic mode. I considered leaving but then I felt like I was reinforcing that if he cried hard enough he could leave. So we charged ahead and finally they took us back for the draw. She wasn’t able to find a good vein and asked me to have him lay down on the table. The insecurity of laying down instead of sitting up put him into a frenzy and by the time she successfully entered a vein he was crying so hard he burst it. We still didn’t have enough blood to run so she poked again on the other arm and again his emotions burst that one.

At this point I told her that we were going to stop for the day and asked her to spin what she did get. And unfortunately we found out later in the week it wasn’t enough, meaning he will have to go back and do it again. This is one of the challenges of medically complex kids. I can’t stand having my blood drawn, so I can definitely relate to his emotions. But there is no other way to do it.

By the time we left there I was completely drained and discouraged. The mental load of packing up for an appointment day- packing meds, formulas, machines, and supplies- is a lot. Then the emotional load and physical load take it to another level. When unexpected happens on those days it challenges my control freak nature and I shut down. We stopped by Chick-Fil-A as a reward for doing hard things and then went home to decompress.

Like I mentioned before, we spent the rest of the week staying close to home base and trying to navigate through antibiotic Malachi. The boys were approved for a local grant and I was able to purchase a playground helicopter for them to play together with. It has been such a sweet toy for them to share and use their imaginations with.

This plane has spots for 7 kids and holds 700 pounds. The wings on the front and back serve as teeter totters so the kids riding in the center of the plane get rocked back and forth. But Levi fully believes that Malachi is flying the plane. At one point he even said “Malachi, I need you to pull over so I can get out!” And then proceeded to get frustrated that Malachi wasn’t pulling over.

We made the most of our time at home, cleaning out closets and trying (and failing) to organize medical supplies. Levi is getting taller so he got to shop in the hand me down bins and find some big boy clothes. It is so much fun for me to see him dressed in Malachi’s old clothes. I don’t really know why.

And Malachi has been such a good sport for Levi’s imaginative play.

Our youth group has been busy lately with all kinds of projects and outings. Last Sunday we partnered with a prison ministry called Kairos that does Bible studies with the prisoners. They also take them chocolate chip cookies and our church signed up to make 150 dozen! We tackled it with the teens and some adults from the church and we were able to knock out 1,764 (147 dozen). Malachi and Levi genuinely love spending time with the “big kids” (as we call them).

This week we took the youth group to the local food bank to pack bags. And as the day approached I kept having these vivid memories of one specific day at the food bank several years ago. I was pregnant with our 2nd child but we hadn’t yet told anyone. I remember cautiously delegating, worrying that filling bags would overexert me and I would lose the baby.

The fear that gripped me through my pregnancies was so entangling.

A few weeks after the food bank day we lost the baby. Processing this loss after already dealing with so much loss of normal with Malachi was devastating. We had prayed so fervently for the “right time” to try for that child and had felt God prompting us to grow our family.

Matthew 14 tells the story about Peter walking on water. Jesus had just fed the 5,000 through a miracle and had sent the disciples on a boat to cross the sea while he spent time alone in prayer. When He finished praying He walked across the water and was spotted by the terrified disciples as they tried to weather a storm.

28 Peter responded and said to Him, “Lord, if it is You, command me to come to You on the water.” 29 And He said, “Come!” And Peter got out of the boat and walked on the water, and came toward Jesus.30 But seeing the wind, he became frightened, and when he began to sink, he cried out, saying, “Lord, save me!” 31 Immediately Jesus reached out with His hand and took hold of him, and *said to him, “You of little faith, why did you doubt?

There have been so many moments in my life where Jesus is standing in a storm and inviting me to join Him in it. The confidence that I feel as I take that step off the boat and into the water with my Lord is invigorating and faith building.

But inevitably the storms I have been called to enter begin to intimidate me and distract me from Christ- the very reason I stepped out of the boat. My narcissistic self goes into survival mode, trying to do the work within my calling without the help of Christ. And then I begin to sink.

Every. Single. Time.

Oh how embarrassingly easy it is to forget our need for a Savior.

But even though He has watched me fearfully fail, He continues to challenge me to obey His callings and walk with Him in the storms. We serve a God that doesn’t give up on us, even when He has to reach down and pull us out of danger time and time again.

I have experienced the feeling of sinking more times than I can count. I have felt that water come up over my bottom lip, threatening to take me under. I have allowed the storms in my path to discourage me from the miraculous moments He is also completing in my life. My prayer is that my mind can focus on those special moments walking on water in humility with the Lord and less on my moments of nearly drowning.

I am so thankful for grace upon grace (John 1:14-16). And I pray for the courage to continue to step out of the boat and enter the waves with God when He says “Come”.

Much love,

Leah

Honey in the Rock

Oh boy, be ready for some pretty fun adventure updates. And lots of pictures with this blog entry!

By midweek Malachi was able to come off of all machines and was breathing relatively normally. He is hanging at a very safe range for his oxygen saturations and he finally has his energy back. We are scheduled to see his pulmonologist in the morning for a routine check up for both boys so I really need his levels to continue to maintain well. The last two pulmonologist appointments I have taken Malachi to have been very close to becoming a direct hopsital admission because of low oxygen numbers. I tried to reschedule this one for a time when he can be 100% but the next available appointment was January so we stuck with it. Say some prayers for us tomorrow morning!

And don’t tell Levi, but he has to get another blood draw tomorrow due to some low sodium readings on his last one. His seizure meds seem to be the culprit so we may have to tweak those a bit.

This week I rented the skating rink for our youth group and their families. The workers there made it such an inclusive experience for Malachi, letting him on the rink and letting him participate in all of the games. Levi gave the skates a try as well, but that was a short lived experience and he spent the rest of the time chasing his buddy.

Levi is a social butterfly and these last few weeks at home have been hard for him. This week he made up for lost time with lots of play dates, swimming, and friend time.

Malachi has been homeschooling this year and I am having Levi sit in the lessons as well. He has been such a sweet helped to his older brother.

Malachi was supposed to go on a mommy/son trip with me in early July, pairing it with some medical appointments in Nashville. The appointments (and trip) were moved by the surgeons to August but then Malachi got too sick to travel and was moved yet again until mid October. In the meantime Levi went on his mommy/son trip to Cincinnati (also paired with his surgery) and Malachi’s disappointment was definitely noticeable.

I told him that as soon as he was feeling better we would make a special trip happen. I spent days tossing out ideas on where to go and what to do and he finally decided on a trip to Medieval Times in Atlanta. This week he continued to trend upward so Friday afternoon I booked tickets and we went on a spur of the moment trip, just the two of us!

And let me tell you…it brought us each more joy than I ever could have imagined.

One of the things I treasure the most is when I see glimpses of typical, 9 year old Malachi. As we traveled for this trip I explained to him where we were going and what we would be doing and he kept falling into a fit of giggles. His excitement and anticipation was such a gift to my mommy heart.

We booked tickets around 2pm, started packing at 3pm, and left the house by 4pm. This is not a normal thing for me, as I usually try to plan thoroughly for trips! I packed his oxygen concentrator and enough machines to keep him safe if his health started to decline. We made the drive to Atlanta and arrived just in time for the show at 7:30.

When I tell you that the experience was amazing, that is an understatement. I had upgraded Malachi’s ticket so that he could be knighted by the queen, and the employees there made it such a magical experience for him. They took time to learn Malachi, even learning his signs. The queen’s bodyguard asked him if he wanted to meet the blue knight (his chosen knight) afterward and Malachi signed YES! Seeing them treat Malachi with such respect and inclusivity was special to me.

After Malachi’s ceremony I wheeled him to the side to snap a picture and he went straight into character. He was a true knight, flexing his muscle and waving his sword. It was cracking me up that I couldn’t get him to smile…he was using his imagination so intensely.

I finally got him to crack a smile and then the rest of the night was full of giggles and fun.

The handicap seating for the show is at the very top of the stadium/arena and I narrated every second to him, Malachi clinging onto every word. He is blind, but the show included lots of lights so he was able to participate at the appropriate times. Whenever his knight got ready for his turn they shined the blue lights on us, cueing Malachi. He held onto his sword, swinging it when the blue knight started to lose a fight as if he was his sidekick in battle. His imagination was flaring and watching him brought me so much joy.

After the show Malachi got to meet the blue knight, who happened to be the winner of the tournament, and he was starry eyed. The knight signed Malachi’s knighthood certificate and he was one happy 9 year old.

I took a few videos of the night to share with Jake later, and I picked one to share with you all so you can see his pure joy:

We checked into a hotel and I gave Malachi a list of things to choose from to do next. He chose to go to a movie, so we headed to the theater and watched Minions until 12:45am. Then we settled back into the hotel for the night and got ready for meds and bed. Malachi couldn’t stop smiling in the room, so excited to be in a hotel for the night. The next morning when he woke up he processed for a second, and then when he realized where he was at he started beaming again.

My brother lives in Atlanta and my niece happened to have a soccer game so we headed there to cheer her on. We spent some time visiting with the cousins, then started on our trip back. We stopped on the way home and split a slice of Oreo pie (his choice…and he demolished it) and I let Malachi “buy me lunch”, helping him sign the receipt.

We were gone for exactly 24 hours. I knew the trip would be fun for him but I was pleasantly surprised. It just went so seamlessly without a single diaper blowout, big seizure, or dramatic medical issue. Our trips are always paired with medical appointments and procedures so having a trip without any other agenda was just so freeing and fun. It is hard to explain, but I felt like a real mother. Not just a medical mom, just a regular mom having fun with her son.

Seeing him so happy did something so good for my soul. It reminded me we may not know what we are doing, but our boys know that they are loved and treasured. And that they are heard and seen for the amazing individuals that they are.

Malachi is already asking to go back. When I asked him what his favorite things were he signed yes for the hotel and the Medieval Times. He was so excited to show Jake the pictures and videos and show off his new sword and shield.

As we were driving through the chaos that is Atlanta I turned on some praise and worship and became “that driver”, singing with all of my might. My heart was so light, airy and thankful. A relatively new song came on the radio called “Honey in the Rock”; here are a few of the lyrics:

There’s honey in the rock
Water in the stone
Manna on the ground
No matter where I go
I don’t need to worry now that I know
Everything I need You’ve got
There’s honey in the rock

I keep looking, I keep finding
You keep giving, keep providing
I have all that I need
You are all that I need
I keep praying, You keep moving
I keep praising, You keep proving
I have all that I need
You are all that I need

These lyrics are pulled from several different scriptures in the Bible (Psalm 81, Exodus 16, Exodus 17), but the main theme being pulled from the Israelites time in the wilderness.

Every single day God provided them with the things they needed to get through that 24 hours. Without the provision of God they would have perished, completing a task that is impossible without Him.

And I feel that deep within my bones.

The things that I have to offer my boys are just not enough. Not enough strength, not enough knowledge, not enough money, not enough time, not enough sleep. I am not enough.

But God is my El Roi. He is “the God who sees”. And just like He sustained the His people in the wilderness I watch God sustain my family. Each day He gives us the nutrition we need to strengthen us for that days God-given agenda.

And every day He proves His faithfulness to us, again and again and again.

This week He not only gave me manna from heaven and water from the rock, but He gave me the blessing of precious, uncomplicated time with my son. What a treasured gift.

And what a Father He truly is.

Much love,

Leah