Dwell

Sometimes I struggle coming up with a first sentence in my entries. The first sentence always seems to set the tone for the rest of the blog entry and this week I find myself wavering between lots of emotions. I don’t know how to start an entry and convey that we aren’t doing good, we aren’t doing bad, we are simply surviving in just one sentence.

The truth is that life has been incredibly hard lately. Yes, we are through Covid but we are still so far off track from all of the drama prior to that round of sickness. We are so thankful to be done with sickness and emergencies, but I still long for a baseline so I can get my bearings again.

Malachi’s seizures continue to be a daily battle. They are lasting for several minutes and he is having at least 6-8 a day. Most nights this week he slept just 3 hours and his body and mind are tired. We met with his epileptologist this week and I had to fight back tears, asking him to please please please help us find some relief for his body and brain. We had found such a great combination of seizure control meds prior to his liver failure. Being back at step 1 for control is so discouraging.

We have started a new regiment as we struggle to get some of his old meds back on board. Right now Malachi is on 4 different seizure medications twice a day. The medications cause his personality to disappear a bit and he is lethargic and sleepy. When he does fall asleep during the day he wakes up with massive seizures and vomiting.

We are just in a very hard season of life right now and I find myself feeling very ill equipped. Watching suffering never gets easy.

Malachi’s bloodwork shows that his liver enzymes are in a safe place and we are grateful for that! We have started a wean to get rid of one of his liver medications and we are hoping that helps clear up the intestinal issues he has been dealing with since his surgery in July.

Even through his exhaustion and mental fogginess Malachi continues to give 100% at horse therapy. Seeing that big smile was the highlight of my week.

Both boys absolutely love animals. A friend of ours owns a farm down the road and invited us over to play with their puppies before they go to their new owners, so of course we accepted and I took the boys over for some puppy cuddles.

We also got to feed the chickens and check for eggs. I don’t have many photos of Malachi as he is getting bigger and requiring both of my hands to support him and keep him safe.

Levi has been a mix of sweet and sour this week. I am told that comes with this age, but that doesn’t really make me feel any better about it haha.

There are times when he is kind and so sweet. We have been spending time talking about manners and kind words and hearing him use words like ”thoughtful” and ”rude” makes me smile.

And then there are the difficult times. The temper tantrums that are just now starting to frequent our home. The bad decisions and the consequences that follow. Parenting well and discipline requires a consistency that I am not always to provide when my arms are filled with a seizing Malachi.

He has been asking every night to play a game and loves to sit around the kitchen table as a family. He is so inclusive of Malachi, even asking for us to order Malachi his own mac and cheese at a restaurant today.

Psalm 91:1-12

“One who dwells in the shelter of the Most High will lodge in the shadow of the Almighty. I will say to the Lord, ’My refuge and my fortress, my God in whom I trust!’ For it is He who rescues you from the net of the trapper and from the deadly plague. He will cover you with His pinons, and under His wings you may take refuge; His faithfulness is a shield and wall. You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness, or of the destruction that devastates at noon. A thousand may fall at your side and ten thousand at your right hand, but it shall not approach you. You will only look on with your eyes and see the retaliation against the wicked. For you have made the Lord, my refuge, the Most High, your dwelling place. No evil will happen to you, nor will any plague come near your tent. For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.

I bolded several thoughts that the Spirit pressed on my heart as I read this scripture and I would like to share those with you.

Dwells”. This word is one that has been placed on my heart so many times this week. How often do we play the back-and-forth game with God, leaning in when times are hard by leaning away when we feel like we have everything under control. There is a difference between speaking to God and dwelling with God. Dwelling is a long term rest in His presence. It isn’t a quick refill and then head back out. It is taking time to lean in close and rest in His embrace.

Rescues you from the net of the trapper and from the deadly plague.” Y’all, this one hit me hard. Sometimes we find ourselves in the net of the trapper and sometimes we get the deadly plagues. We are not exempt from attacks from the devil. You WILL end up in his net. We have to stop being surprised when the trials in life come- learn to expect them and spend the easier days building up your faith for the hard stuff of life.

This week we were talking about our puppies upcoming surgery to be neutered. Levi listened intently as Jake and I talked to one another and then he chimed in with ”The puppies have to do hard things?” This is a phrase we use often in our home, particularly around medical procedures and uncomfortable things. I am constantly repeating a motto of sorts ”sometimes in life we have to do hard things. And you CAN DO hard things.” No one is exempt from the hard things of life. Sometimes we need to be rescued, and what a faith building moment those rescues can be!

Under His wings you may take refuge.” Sometimes I get so focused on God swooping down to rescue me like we just talked about that I forget that the responsibility to nestle under the wings of God also lies on our shoulders. God won’t hold you prisoner under His wings, it has to be our choice to remain there and to take refuge. Choosing refuge is a decision, not a mandate from God. He offers those spots under His wings to give us moments of peace and protected respite.

You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness” When I read this verse it knocked the wind out of me. This is the struggle I have been in this week. My mind and heart have been at war each evening as I lay my head on the pillow, spinning as I process Malachi’s future. It terrifies me to think about losing him. I have found myself praying heavily over his death this week, whenever that time may come, that God protects Malachi from suffering. The thought of the future has been keeping my mind up at night, leaving me weakened for the arrows that fly by day. The constant arrows…the seizures, the medical mishaps, the “hard” stuff of our lives. This verse says that we will not be afraid of these things if we have made the Lord our dwelling place. When these thoughts at night overtake me and stalk my brain it means that I am not dwelling with the Lord. I have strayed and I need to find my way back under His wing.

For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.” This verse is such a beautiful verse. The mental image it creates for me is so special, especially considering Malachi is unable to walk. I have this scripture in each of the boy’s bedrooms as a reminder to pray it over them. Knowing that there is a host of angels surrounding us and waiting for those moments when we trip so they can catch us is so special.

I can feel in my heart and soul that I have stepped a bit too far away from the protection of God. I have moments of dwelling, but they have been fleeting and just enough to refill that cup just slightly. This week I will be working to settle in under those wings again and thank Him for His faithfulness in our lives.

Malachi is ready for bed and that is a cue I would hate to ignore! We both need some rest. But I am so thankful for the many ways you lift our family up in prayer.

Much love,

Leah

Pride the Spiritual Cancer

This week we re-entered the world, very weak and shell shocked but so happy. Our endurance for everything has been challenged and it will take some time for us to return to normal.

Jake went back to work on Tuesday and managed well through his classes. By Thursday he was back to coaching soccer and trying a few things outside of work hours. Someone on the sidelines took this photo at the game and I couldn’t help but turn it into a meme.

The boys returned to horse therapy on Monday and they were thrilled to have human interaction with others. They worked very hard at therapy and both fell asleep on the way home. Malachi was the most excited about the barn- he hasn’t been to horse therapy since before his emergency surgery in July.

I have had a hard time with my energy level. At the beginning of the week I tried to jump back into things but my body reminded me that it needs some time to recuperate. I was hit with some pretty big waves of fatigue and some tightness with my breathing. I also broke out in another rash that we are thinking is poison ivy so I went back to the doctor this weekend to get another steroid to help with inflammation in my lungs and maybe relieve some of my allergic reaction to the poison.

But overall we are healthy and happy! And the boys got some much needed haircuts.

Random side-note: Levi has started a rock collection.

Malachi has an appointment with the epileptologist this week and I am so eager to talk to him. His seizures have been so aggressive lately and clearly this new medication regiment he is on is not working. In addition, the med combination he is on includes a vitamin for his liver that causes stomach upset. Today starts his 9th week straight of diarrhea. I am really hoping his bloodwork will be good enough for us to consider eliminating and replacing some medications.

He has struggled the most this week with energy. I grew worried about him mid-week as his color was off. I could tell he just felt a little unwell and his sleeping has been very disjointed, like his body can’t relax. He seemed to improve as the week went on but I will feel a lot more comfortable after some bloodwork on Tuesday.

Malachi’s g-tube popped sometime this morning, which normally would send us into a flurry but after the weeks we have had we didn’t even finch and got a new one in easily. It is so interesting how perspectives can change. “Worst case scenarios” tend to shift a couple levels down when hard things hit.

Levi is still a bundle of energy and a flurry of words and questions. He has been re-telling the story of the night “Daddy passed out in the kitchen” to people and hearing his take on it all makes me laugh. The details he retained from the night are impressive for a three year old.

I didn’t have the clarity of mind to share much of the funny moments with you from the last few weeks but we had several. They were such precious jewels to me as they made me smile through my tears.

On the first really bad evening I was trying to keep both kids hydrated with Pedialyte. It was 3:45am and I was up with two feverish boys. I poured a glass of blue Pedialtye to send into Malachi’s gtube and Levi asked for a glass. I poured some for him in a 2 ounce medicine tube and carried it over to him on the couch. As I was getting ready to feed Malachi Levi said ”Momma, momma! We having a party!” and then clinked his little medicine tube of Pedialyte against Malachi’s cup before taking a big drink. His joy over our “party” on the couch made me smile. He was so incredibly sick in that moment but found a silver lining.

A few nights later Levi started to get very loopy from sickness and extra dramatic. He would burst out crying and when I asked him what was wrong he would say ”My Chi Chi is sick” and start sobbing. Even in his discomfort he was concerned about his brother. So sweet.

Another night he was on the verge of sleep and gasped loud enough for me to jump. He sat bolt upright and said “MOMMA!! There is a HAIR on my leg!!!” And showed me a single hair (in the hundreds) that he had on his leg. I acknowledged his leg hair which seemed to satisfy him, so he closed his eyes and went to sleep.

I think we were all a little loopy by that point.

On Wednesday I was able to meet with my youth group for the first time in several weeks, and oh how refreshing it was to reconnect with them. I shared with them the spiritual struggles we have gone through in each branch of our recent challenges, and sometimes being honest and transparent about our moments of weakness can provide such guidance for others. When I prepare lessons for them I try to treat the opportunities as ”training moments”, hoping I can help strengthen their faith so that when they face challenges in the future they will have already learned how to combat them.

I also try to be extremely transparent about the different ways the devil attacks, and specifically on the topic of pride. I read a chapter from C.S. Lewis this week from the book ”Mere Christianity” and it struck my heart in a much needed way and I wanted to share it with you all. The chapter is several pages long so I chose a few paragraphs to share with you instead of its entirety, but I encourage you to google one of the paragraphs and read the whole chapter online as it is a powerful one.

”I now come to that part of Christian morals where they differ most sharply from all other morals. There is one vice of which no man in the world is free; which everyone in the world laothes when he sees it in someone else’ and of which hardly any people, except Christians, ever imagine they are guilty themselves.”

”The vice I am talking of is Pride or Self-Conceit; and the virtue opposite to it, in Christian morals, is called Humility. You may remember, when I was talking about sexual immortality, I warned you tha the center of Christian morals did not lie there. Well, now, we have come to the centre. According to Christian teachers, the essential vice, the utmost evil, is Pride. Unchastity, anger, greed, drunkness, and all that, are merely fleabites in comparison: it was through Pride that the devil became the devil: Pride leads to every other vice: it is the complete anti-God state of mind.”

”Many a man has to overcome cowardice, or lust, or ill-temper by learning to think that they are beneath his dignity- that is, by Pride. The devil laughs. He is perfectly content to see you becoming chaste, brave and self controlled provided he is setting you up in the Dictatorship of Pride. For Pride is spiritual cancer: it eats up the very possibility of love, contentment or even common sense.”

-Chapter 8, The Great Sin

The further removed I get from this recent wave of trials the more I am able to look with clear eyes and recognize the many ways that my pride made that battle so much more difficult. My flares of anger and frustration, every single one of my pity parties, each of my ”woe is me” nights of crying was a tiny spark that my pride turned into a bonfire.

*My pride convinced me we didn’t ”deserve” to be going through so many hard things, all compounded on top of each other. But my faith in God reminds me that these hard things are still part of God’s plan that He hasn’t revealed to me yet. Pride sometimes makes us foolishly think we should be able to share the thoughts of God.

But His Word reminds us ”’For my thoughts are not your thoughts, neither are your ways my ways,’ declares the Lord. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts that your thoughts.’” Isaiah 55:8-9

Faith is being content, even when we don’t get a glimpse at His plan.

*My pride convinced me that I could handle everything being thrown at us, when in reality I was not capable of meeting everyone’s needs on my own. I needed supernatural strength and clarity that only the Lord could provide. I needed a community to surround us and help lift up our arms each time they fell in desperation.

We are so quick to turn away help from others, seeing it as a sign of weakness. But those are actually the moments for us to practice our humility and allow ourselves to admit that we can’t do it alone. This is still very much a struggle for me. In my past I have had moments of people helping me with significant needs, then using those moments as weapons to shame me later. The hurt from these incidents has created such a dark hole within me that I feel the need to savagely protect from being able to grow any larger. It is easier for me to refuse help, knowing that I am preventing future hurt. As twisted as it sounds, that’s something that trauma can do to you.

Isaiah 40:29-31 reminds us ”He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

We were never intended to do the hard things alone. We were never created to do the hard things of life alone. We WILL grow tired and weary, we WILL stumble and fall. It is in those moments that we are called to hope in the Lord and watch His strength be portioned to us. I believe firmly that God will not only freely give us His strength but He will also use other brothers and sisters to lift us up with their strength.

In Exodus 17 there is a story about Moses and the Israelites facing a battle against the Amalekites. The Bible tells us that as long as Moses held up his arms, the Israelites won, but when he put his arms down, the Amalekites started winning. Verses 12-13 tell us: ”When Moses’ arms grew tired, Aaron and Hur brought a stone for him to sit on, while they stood beside him and held up his arms, holding them steady until the sun went down. In this way Joshua totally defeated the Amalekites.”

God could have instantly given a portion of His strength to Moses, but there is a reason He didn’t. Sometimes God chooses to allow a testimony to be written as we watch our brothers and sisters in Christ support our weak and shaking arms. Sometimes our moments of physical pain and shaking muscles are never really about us, but are an instrumental part of a spiritual lesson for someone else. We need to be content in being a teaching tool that God uses in other’s testimonies. What an honoring way to be used by the Lord.

*My pride convinced me that I needed to maintain a reserve for myself and my healing. But In Philippians 2:5-8 we are reminded: ”Have this attitude in yourselves which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross.”

The world screams ”You can’t pour from an empty cup”, but the truth is that it honors God so much when we empty ourselves for others as it is an act that is completely void of pride and can only breed humility within us.

Psalm 16:5 ”Lord, you alone are my portion and my cup: you make my lot secure.”

When we recognize that the portion within our cup is not something we have created, produced, or secured but rather something that has been gifted to us from the Lord it seems so foolish to think we are to selfishly hang on to it.

Oh the faith it requires to empty yourself for others. But the strengthening of your faith that can come from watching God fill that cup again to the brim…simply because He loves us and feels honored by our continual obedience.

Every single day I struggle with this. Lately it seems that when my head hits the pillow there isn’t a drop left in that cup. And the fear of another empty cup the next day can taint my vision when my eyes open the next morning. But when I recognize that the empty cup keeps me closer to God it helps me see that Him giving me just what I need for each day is a blessing. His mercies are still new every morning. This is a verse that God has been laying heavily on my heart this month and I find myself reciting it every morning: Lamentations 3:22-23 ”The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”

I could ramble on and on and on about the lies my pride allowed me to consider over these last 9 weeks of difficulties. The list is enormous and embarrassing. But as C.S. Lewis says at the end of that same chapter from above: ”If anyone would like to acquire humility, I can, I think, tell him the first step. The first step is to realise that one is proud. And a biggish step, too. At least, nothing whatever can be done before it. If you think you are not conceited, it means you are very conceited indeed.”

I want to encourage you to find the hidden pride in your life that has started to become a spiritual cancer. Look at the many ways it has eaten the possibility for contentment. Follow the paths of the sin in your life and trace their roots to pride. I believe that naming sins in my life is one of the most important things I can do, as they serve as an acknowledgment to God and the devil that I am aware and I desire to put them to death.

The true humility that we are called to as Christians isn’t something that we can create. It comes naturally as a byproduct of living a life like Christ. I know I am beating it into your brains but please please please read Philippians 2:1-18 this week. It is literally titled ”Be Like Christ” and is such a great place to start.

Goodness that ended up being a long entry. God sure did have a lot to say. I don’t know who each part of this entry was for but I believe with all of my being that each word on here was ordained by Him for some of you. When I started the blog my intent was to talk about one of the miracles from Matthew. Clearly God had another direction to go.

Isaiah 55:11 ”So will My word be which goes out of My mouth; It will not return to Me empty, without accomplishing what I desire, and without succeeding in the purpose for which I sent it.”

What an amazing God we serve!

Much love,

Leah

Accept Adversity

This last week was one of the hardest ones we have faced as a family, and as you know we have been through some real doozies. After last week’s updates Jake continued to slide in a negative direction with his battle with Covid. We reached a point where his needs surpassed my abilities but after speaking with several doctors we were told he would not be admitted to the hospital based on his oxygen saturations being above 90. We were able to start him on Ivermectin and by the middle of the week he finally started to get a bit of relief in his chest and breathing. Every night he went to bed scared and worried, which obviously alarmed me as well. We kept him hooked to the pulse ox and on a baby monitor so I could hear him if he started passing out again.

In addition to his escalating care, the rest of us all became very stagnant in our improvements. Malachi’s fevers came back and you could tell he felt terrible and weak. I was so worried that his liver would start to fail again with the amounts of Tylenol I was having to run through him to keep his high fevers/seizures at bay. He still is very weak with large, dark circles under his eyes but his demeanor and spirit is so much better.

Levi continued to vomit all week and we worried about dehydration so he ate popsicles for a week straight. Vomiting for him is just so dangerous as he is not able to close his airway to protect it. Because of his frequent vomiting he did not rest well at night, waking up many times to vomit.

I developed head to toe hives as a reaction from the monoclonal antibody injections. Literally all over my scalp, down my entire body, and even on the tops of my toes. It was incredibly miserable and the only relief I could get was from Benadryl. But unfortunately Benadryl clouded my thinking and I wasn’t able to care for the kids, so I had to just deal with the discomfort to make sure their needs were met. It grew so bad that my face and mouth started to swell and fevers started. One of our doctor friends let me do a driveway visit and was able to call in a steroid for me which finally brought some relief. The rash is still there but is no longer painful.

The virus took away my smell, my taste, and the majority of my hearing. I was down to two senses and absolutely miserable but had no one to help take over responsibilities. I had so many moments of desperation and the feeling of being completely overwhelmed. Every night I went to bed hoping the next day would be better but somehow each day was worse than the one before.

There were so many physical, mental, and emotional battles to fight. I am going to speak really honestly here even though it is ugly. I felt a seed of bitterness growing deep within me towards Jake that I knew was planted there by the devil. I was frustrated that he wasn’t able to help me with the boys. I was frustrated he didn’t prioritize the vaccine. I was frustrated he was asking so much of me. I kept repeating this verse over and over in my head, although admittedly sometimes it was through grinding teeth…

”Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others.” Philippians 2:3-4

This verse was such an encouraging fuel for me in caring for Malachi and Levi. And at times it worked for caring for Jake, but then the devil did his “thing” and started to try to pollute those words and use them for destruction. I kept flashing back to the many moments in my lifetime I have had to sacrifice my health, peace, or energy for others. The innumerable times that someone else’s needs came before my own. I started thinking “when will it be my turn to be on the other end of this verse God???”

But this verse isn’t simply about actions. It is about our heart’s condition. We don’t do these things to “earn”, we do these things because they come from a heart that is like His. Humility of mind is clearly something I am still lacking, and this week made that glaringly obvious.

God calls us to serve- even when it is asking more than what we are capable of. He wants our hearts, not just our actions. And sometimes we will be called to give our everything and trust God to refill.

The devil will try to get you to believe in scorecards and tally marks. He pointed out all the times that others took advantage of my kindness and my sacrifice. He pointed out all the times that people who should have been caring for me didn’t. He brought up past hurts and disappointments. He turned my vision away from God and directed it at myself. And you simply cannot do the work of the God if you are focusing on yourself.

The devil started to convince me that I was invisible. And there was so much sadness in this week for me. I was giving 100% of myself, sacrificing my own healing for others and it still wasn’t enough. Every night I ended up sobbing in the living room, sleep deprived but needing to watch my husband on one baby monitor and my medically fragile children on the other. The desperation I felt this week was unmatched by any other.

As the health and life came back into our family my heart also started to heal and I was able to start taking every thought captive again. Jake and I laughed (in a cringey way) about how much this felt like a Job story. Even down to his boils/my hives. I have never related more to Job sitting silently around a campfire, not even able to formulate words in his sadness and pain.

Job has always been one of my favorite books of the Bible. As a teenager it taught me what a relationship with God looks like. It opened my eyes to the nature of God as our Father, bragging about us to the devil. It helped me understand free will. It helped me understand the strategies of the devil. The lessons God showed me as a young teenager from Job were a staggering part of my faith.

I remember reading Job one evening when I was maybe 16 years old and praying that God would help me build a strong enough faith to catch the eye of the devil. I wanted God to be so proud of my faith that He would elbow the devil and say “Have you seen my servant Leah?”

I can’t tell you what God thinks of my faith- especially after a week of weak moments like the one I just had- but I can tell you that the devil has been after our family recently. He has been after our children, after our health, and after our marriage as our children’s needs trump spousal ones. He has been looking for spots of weakness in the armor to attack and it has highlighted some major areas that need some strengthening.

The night Malachi was born they were racing me down the halls into the operating room and the ceiling tiles whizzed by over my head. I knew I needed to pray, but I couldn’t even think of how to start. The Spirit pressed the words from Job in my heart and I recited them over and over again until the anesthesia took me away: “The Lord give the and the Lord taketh away, blessed be the name of the Lord.” That night as I processed this prayer rolling off my lips I convinced myself this was God’s way of preparing me for losing Malachi.

But Malachi lived! And that verse became a part of my song of thankfulness to God.

This week as I reflected on Job’s story again in light of our current struggles I decided to read it again. When I got to Job 2 I read a verse that struck my heart in such a good way: “ Then his wife said to him, ‘Do you still hold firm your integrity? Curse God and die!’ But he said to her, ‘You are speaking as one of the foolish women speaks. Shall we only accept good from God but not accept adversity?’ Despite all this, Job did not sin with his lips.”

Ugh, conviction. That one struck a deep cord within me and I could feel my face burning from embarrassment.

The verb choice there is so important: accept. It implies that it is a decision you make to open your arms to it. To open your arms to the hard things, the ugly things, the detestable things.

You don’t accept simply because you are a glutton for punishment, but rather you accept because you see that God is a refiner. Just as this week did for me, adversity highlights the idols we hold to over God. Adversity pinpoints our weaknesses and our egos and helps us see the ways we still rely on ourselves instead of Him.

Oh how shallow the roots of our faith will stay if we only accept the good from God and never the adversity.

As we travel back towards normal in our household we ask that you continue our prayers for health. We are all very weak and most tasks are much harder than they used to be. We spent the entire weekend sanitizing, doing laundry, and cleaning every surface in our home, eager to open it back up for Bible studies!

Here are some fun and happy photos to end the post this week. We got to enjoy some serious family time, filled with games and popsicles.

Thank you to everyone who sent sweet messages, prayers, and cards. We were so blessed by meals and kindness this week and I truly couldn’t have done it without your help. Thank you for carrying us when we were too weak to do so.

I have so many other things I really want to share with you all, but I am still needing to prioritize time a bit while we struggle to find our normal again (does that exist haha?). I am sure this blog was a jumbled mess like last week, but God can still work through the messy- I trust if He wanted you to hear something specific this week from this entry then He will make it abundantly clear to you. And if you need a devotion this week that challenges your faith in a beautiful way start reading through Job!

Much love,

Leah