Submit

I have been slacking a bit in my blog routine lately; when I have sat down the last two weeks to write I have felt God’s leading to close the screen and try again the next morning. He knows me better than I know myself so I have been trying to be obedient and assume God’s timing has a purpose.

Levi is growing like a weed and moving fast into big brother’s hand me downs. There are still ”firsts” for us as parents, even though Levi is our second child. We never had a reason to really buy shoes for Malachi so we don’t have hand me downs in that category. I had to take Levi for some bigger shoes this week and his wide-eyed wonderment at all of the options was a really precious parenting moment. Levi wears braces inside of his shoes so we have to be pretty picky to make sure his braces will also fit, but he was so excited about his fancy new shoes!

Our summer has continued to go so incredibly well with lots of family time. We have been doing lots of planned and impromptu play dates with friends here at the house, and Malachi and Levi have spent hours this week in the pool. Malachi keeps beating his record (at his request) and will often spend over 2.5 hours swimming. It is hands down his favorite activity right now.

The FDA recently put out a statement regarding neck rings like the one he uses to swim due to some children somehow slipping through. Malachi is always supervised when he uses his so for now we still feel comfortable with continuing.

It is very hard to have a social life with medically complex children, and it is something I am more than happy to give up in this season that we are in. However, God has been very gracious to us in many ways, bringing such kind and loving people into our world.

At a neurosurgery appointment 5 years ago we ran into another medically complex family and started a conversation. They have two amazing boys, and one of them has many of the same diagnoses as Malachi. We still get together several times a year and text often, and this week they came to our home for a play date.

There is something refreshing about being around other medical mommas. It is inspiring in a way to be able to watch the unique-to-them but similar to us routines and strategies that we use to help provide normalcy for our children. To see others doing life well is always an encouragement to me and challenges me to keep pressing on.

Here is a photo of Malachi and Thatcher from 2016

And one of them together this week!

While we have been thoroughly enjoying summer, this week the ominous wave hit me that we are about to enter our season of medical traveling. Lots of psychological warfare is about to begin as I manage a lot of PTSD from medical facilities and specialists. Anticipatory dread keeps creeping in, keeping me from being as present as I would like to be. I have to keep refocusing and trying hard to enjoy the moment.

Tomorrow is a big day as we head to youth camp with our youth group. We will have 50 at camp this year, and then 6 total at a house off-site with me. This is the largest group we have ever taken to camp and the devil has most definitely been trying to slow us down. Just this weekend two of the three buses we were using to transport kids broke down and we had to scramble to find replacements.

Whenever the devil starts his tricks I can only assume it is because something really great is about to happen at camp that will impact the Kingdom of God in a mighty way. So as stressful as things have been I am really excited to watch Him work.

This is our family vacation each year, and something both of the boys have been giddy about! We require a kitchen, sink, and refrigerator for medical needs when we travel so we rent a house close to camp. Jake stays on site with the teens and a few other chaperones and I travel back and forth each day with the kids and some great friends that come to help with the boys.

When we return next week I will have a few days for laundry and unpacking, then Malachi and I will head to Nashville to meet with his orthopedic and spine surgeons. We will do x-rays and examine his foot positioning to see if it is time for another surgery. Then the next week I will head to Cincinnati with Levi for his week of appointments and surgery.

Malachi is very aware that Levi gets a whole week in Ohio with just mom, so we typically try to give him a special trip with mom of his very own. I will book a hotel room for he and I and we will find something fun to do around the hospital. Last year we did the Rainforest Cafe and Build a Bear.

I was reading through James 4 this week and came across this verse:

James 4:7

Submit therefore to God. Resist the devil and he will flee from you.”

There are so many truths in this verse, but the one that immediately hit my heart was the very first word: submit.

So many times we try to resist the devil through our own power. But it isn’t our power that overcomes…it is the power of God through us when we submit to Him.

This week as I have wrestled with the doom and gloom that is to come over the next month I have found myself trying to fight those thoughts on my own. And it truthfully just isn’t possible. I can distract myself from them, but the power to remove them from my heart and mind is beyond my capabilities.

So this week I am working on submitting to God. Acknowledging to Him verbally and from deep within my soul that I am weak and apart from Him I can do nothing (John 15:5). I am asking that He replaces my anticipatory grief with His peace.

And I am trusting that He will do just that!

Please be in prayer for our family as we enter a week of focused ministry. And please be in prayer for the weeks of medical traveling that will follow.

May God reveal Himself to you this week!

Leah

Ambassadors

This is one of those weeks where I stare at the screen, not quite sure where to start. Sometimes I have to re-focus myself on the purpose of the blog. I have always wanted it to be a glimpse into the lives of a medically complex family so when we have ”normal” weeks I find myself scratching my head on what to share with you.

I could share with you our normal moments like soccer practices, play dates with friends, family game nights. We have had a full and busy week with lots of laughter.

But when I allow my mind to search for all the medical moments, we certainly had several this week.

Malachi’s oxygen levels have been up and down as he is dealing with a little extra drainage. He can go from an oxygen saturation of 96 (with 100 being perfect) down to 85 due to some junk in his throat. We are using the cough assist machine frequently on him and while it does help tremendously he still hates it with a passion. And I don’t blame him one bit. It is an extremely invasive machine.

We added a piece of furniture to the house last week and it has made life a little bit easier. I am still working on finding good equipment storage options for the top tray. We secured a 10 foot power strip on the cart so all of the machines are plugged in and we can wheel it anywhere in the living room. It has been such a blessing already. Several of his other machines don’t fit on the cart but these are the most frequently used ones right now.

One of the things you may not know about medically complex families is the insane amounts of medical supplies we stock each month. We have several cabinets that are each designated for different items and our medicine cabinet looks like a pharmacy. Right now we are using over a hundred syringes a week between the two boys.

This week Levi and I were talking about our upcoming trip to Ohio and all of the fun things we were going to get to do. We try to mask our medical trips each year with focusing on the fun. I don’t mention surgery or the many doctor appointments until the day of each so he won’t have the opportunity to dwell on them and develop anticipatory fear.

As I was watching him I watched his little face change and he said ”I don’t want to go to Ohio. I don’t want to see great grandma. I don’t want to stay at grandpa’s house.” I asked him why he didn’t want to go and he burst into tears. Through his sobbing he said ”Me don’t want to have surgery” over and over again.

For years we have been able to delay his awareness for surgery, but this year he pieced it together all by himself. He sobbed and cried, which increased his effort with breathing and caused him to vomit. As much as I tried to calm him down he just couldn’t calm down.

This is always a difficult dilemma for me. I never want to lie to Levi, especially about hard things in life. So we embraced the hard together and talked about why we have to do hard things. He cried himself to sleep and my mommy heart was so broken for him.

It continues to be a topic every single day, almost as if he thinks he can negotiate his way out of surgery. But the truth is, I am dreading it as well. This is the year that they will formally determine if Levi’s vocal cords are permanently paralyzed. I know from clinical signs that they aren’t moving, but having medical professionals confirm this still carried a level of sadness.

Jake and I took our youth group on a hike up the side of a mountain down the road from us for a time of Bible study and worship. He and I used to do this hike often in college and it was one of our favorite places to go, so hiking back up there with the teens was such a special gift. In fact, the last time we made that hike together I was pregnant with Malachi!

When I think back to those early carefree days with Jake they feel like a lifetime ago. A decade ago we were hiking through Montana and exploring national parks. Our faces (and bellies haha) were thinner and our eyes were brighter but the depth of our faith has changed monumentally.

Sometimes I look at photos like these and find it hard to believe we once lived a life that was THAT carefree. But those years were such a gift from God in our relationship. I have to often fight the temptation to play the comparison game with our former selves as it has the ability to breed discontentment.

I think anyone reading our blog would easily decipher that we are very much pro-life, believing that God is the author of all life. Malachi’s life verse before we ever knew of the complications that were to come was Jeremiah 1:5 ”Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”

When we are in our hometown Malachi is loved, accepted, and valued by so many. I am aware that not everyone shares those same emotions towards children with special needs, but every now and then I forget. This was one of those weeks that I was reminded of the harshness that still exists towards children like mine.

I read a post from a NICU nurse on Facebook and immediately after I read it I wanted to vomit. The sadness that welled up inside my heart was overwhelming as it reminded me that my definition of worth is so very different than the worlds.

The post included a few phrases that I would like to share with you:

”if you ask anyone who works with critically ill infants or children, you’ll learn that some lives are simply not worth living…I’m talking about kids who will never walk or talk or play or smile or feed themselves or breathe on their own.”

”The ones that will endure painful procedures and infections their entire lives with no hope for recovery. There are legitimate reasons to end a pregnancy and spare a child from a lifetime of pain and suffering. Ironically, it can sometimes be the most loving and humane choice for someone.”

I have seen very traumatic situations in our hopsital stays with the boys. I know that suffering exists. And if my very limited view of these situations represents even a fraction of what healthcare professionals see then I can only imagine the heartache they often experience.

But we have to be very careful as a society to not categorize quality of life. In the last week I have very quickly watched Americans use children like my Malachi to rationalize ending a life. And as a mom of a very unique, very smart, very amazing child with complexities I ask that you don’t use my child’s condition or life as evidence for a mercy killing.

Malachi has changed me profoundly, and in turn changed the world I interact with. His life has so much value and so much worth. The fact that I even feel in my heart a compulsion to type that sentence is a tragedy.

I can provide an argument for the value in Malachi’s life. I can provide detail after detail as I try to convince you that there is so much world-changing that happens even within suffering. But the truth of the matter is that I can never convince someone to fall in love with God. To be so would be a manufactured faith that wouldn’t take root.

Only God can change hearts and transform minds.

That sentence bears repeating again. Only God can change hearts and transform minds.

The Bible tells us in 2 Corinthians 5:20-21 ”Therefore, we are ambassadors for Christ, as though God were making an appeal through us; we beg you on behalf of Christ, be reconciled to God. He made Him who knew no sin to be sin on our behalf, so that we might become the righteousness of God in Him.

We are ambassadors, representatives of Him on this earth. Too often we spend our efforts trying to change hearts instead of introducing others to the One who can change their hearts.

So my prayer this week is that God continues to use Malachi as His ambassador, using his suffering and his joy to draw others into a faith walk of their own. And my prayer is that God gives us the words, the posture, and the heart to be representatives of Him on this earth.

Please be in prayer this week for our upcoming youth camp! We have over 50 going this year, and the (wonderful) spiritual weight that Jake and I carry for each of them is one of the most rewarding yoke’s we have the opportunity to carry.

Much love,

Leah

Rescued

This week was scorching hot here in east Tennessee and Malachi does not tolerate the heat well, especially with heat indexes above 105. The best way to describe it is that he ”melts”, unable to engage any parts of his body. If he gets too uncomfortable he starts seizing so we typically try to keep him as cool as possible.

Horse therapy on Monday was borderline too warm but we thought we would give it a shot. It was pony painting day and Malachi melted but was able to use his eyes to communicate by looking at the therapist when she got to the color he wanted and looking away when she offered ones he did not want.

Levi also painted during his session and thought it was great fun! Levi has some sensory issues that were challenged by the session, particularly when his clothing got wet while washing the horse. He goes into a panic mode and can’t focus on anything else.

It brings me so much joy to see how each of them have changed in the last year. Levi was barely able to chew foods, and was still unable to swallow most of them. He would spit them out in a napkin after chewing them up. He was completely g-tube dependent. If I sat down and listed all the things he eats in a single day now you wouldn’t believe it. Just this week he literally jumped up and down when I told him I bought spinach dip for him, and he then ate it by the spoonful. I couldn’t watch haha. I love spinach dip but seeing it being shoveled into his mouth was a bit much.

And Malachi’s personality continues to grow with him. He is getting older and acting so much like the 9 year old that he is. It has been a good parenting challenge to try to find ways to grow our routines with him. This week we started reading a chapter book each night after our Bible story and he has been hanging onto every word. In fact, he got so immersed into one scene that my over-animated reading of one line set him into a pretty big seizure. I am learning to watch his engagement closely so I don’t spark one of those again.

Jake and I finally had a chance to celebrate our anniversary and went to Chattanooga for lunch and a trip to Dave and Busters arcade. I had never been there before but Jake and I’s courtship was centered around some friendly competition so it seemed like a fitting place for a few games of ski ball. The boys joined us of course, so I tried to prep them a bit for the experience but failed. Both of them were extremely overwhelmed when we walked in with all the lights and sounds. Levi asked if we could leave and Malachi just shut his eyes tightly and shut down.

We almost turned around and walked straight back out but we decided to play just a quick game of ski ball since we had already unloaded the crew (a task with the wheelchair). I watched Malachi very closely to make sure we weren’t inducing any seizures with the lights but after a few minutes his eyes were wide with excitement. Levi also started to loosen up a bit after he got the chance to play some ski ball.

They had several ride on games so we let them take turns sitting on them and pretending to play. They rode motorcycles, blasted dinosaurs before they ate us, and threw basketballs.

We headed home and later that evening Levi said ”Mom, I really liked the game place.” I asked him if he would want to ever go back and before Levi could answer Malachi nearly fell out his chair trying to sign YES YES YES. I guess a repeat trip is in our future.

It was haircut week, and the boys were way overdue. I couldn’t help but giggle at the before and after photos.

Tonight we took Jake for some Father’s Day ice cream. We each got a different flavor and let Malachi taste all of them and vote for his favorite. He loved the game and declared strawberry as the winner, much to our surprise. He is a chocolate loving boy. His smile melts my heart.

This week I ended up dealing with some pretty big surprise emotions.

Early on in our journey with Malachi our circles crossed with another local family with an adult son with medical complexities. We have watched this family very closely over the last 9 years, and even got some construction advice from the parents when we were making plans to build our home.

Tripp was 29 years old and an amazing young man. He loved his momma, his girlfriend, and his church. And he loves Jesus. Tripp could communicate through technological devices and it was through his life that we were encouraged to try to help Malachi find his voice.

Over the last few weeks Tripp’s health declined and on Tuesday he walked through those heavenly gates and ran into the arms of Jesus.

The transition between Tripp’s decline and his passing affected Jake and I in a profound way. I was hit with waves of anticipatory grief, feeling the situation on a very relatable and personal level for his parents. Understanding the pull between heaven and earth, desperately wanting to live life on earth with your child but also desperately wanting them to experience the freedom heaven holds.

I have shared with you before that I don’t like unknowns. I will skip to the end of a book and read the final chapter so I can enjoy it’s pages knowing how it will end. The inability to skip to the final chapter is something I really struggle with.

In Colossians 1:9-14 we read:

For this reason, since the day we heard about you, we have not stopped praying for you. We continually ask God to fill you with the knowledge of his will through all the wisdom and understanding that the Spirit gives, so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.

There are so many important truths that jumped off the page at me as I read these words this week. The first truth is the reminder to me that we aren’t capable of understanding the ways of God. We are only privy to the pieces that the Spirit of God reveals to us along the journey. We waste so much effort trying to make sense of things that God doesn’t intend to reveal to us quite yet.

The second truth is the reminder that we are simply called to live a life worthy of the Lord and please Him in every way. God’s expectations of us are pretty simple if you really think about it. The things it continues to list, like bearing fruit, growing in the knowledge of God, being strengthened…these are all things that come naturally when we focus on living a life that pleases God. They are byproducts of a God centered life.

I love the words in this verse and how purposeful they are. Particularly the verse: being strengthened with all power according to his glorious might so that you may have great endurance and patience.

There is such a huge truth hidden in this verse as it reminds us that walking a life aimed at pleasing God will absolutely create weariness within us. This weariness isn’t a sign of weakness. Walking a life of obedience to Christ requires endurance and patience, and often we have to take time to rest in Him.

When I look at Malachi, and when I think about the life of Tripp, I can’t help but see how well they live out the words in this verse: endurance and patience. And knowing that God continues to strengthen as we develop those verbs is such a gift from the Father.

The final truth I can’t help but focus on in these verses is: For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves.

Tripp has been rescued and brought into the kingdom of the Son. And God knows the date and time of Malachi’s rescue, and He already knows the date of mine.

When we re-define death as a rescue mission you can’t help but see the love of the Father in even those dark moments.

God asks that as we wait on our rescue that we continue to cultivate patience and endurance, living a life of bearing fruit and growing in knowledge of God. And Tripp did just that, and did so in a magnificent way.

Please be in prayer this week over Tripp’s family and close friends as they process this loss in their lives. Tripp’s beautifully written obituary can be read here: https://www.chattanoogan.com/2022/6/16/451071/Hathcock-Lindsay-Tripp-Cleveland.aspx

Much love,

Leah

Greatest Commandment

As we transition into a summer schedule Jake and I go back to the drawing board each year and re-assign tasks and caregiver roles. We are slowly finding the summer groove. Jake goes to bed early and then takes whichever kid wakes up first. I stay up until everyone is asleep but get to hand off the kids when they wake in the morning so I can grab a few extra hours of sleep.

Malachi’s brain has locked into a new bedtime of 3:45-4:00am. I know this is hard to understand, but as hard as I try I cannot change what his brain locks in. I can take him back to the bed at 9pm but he will still continue to stay awake until he hits his established time. We have tried changing routines, changing feeding schedules, and all the tricks but he still cycles through these timelines every few weeks. So we simply enter his world and try to adjust accordingly.

In the same way he locks into specific times, he also locks into specific routines. Right now he is having a big seizure every night 15-20 minutes after I lay him down. So I lay him down then wait impatiently for it to hit so I can intervene. This nighttime seizure is an aggressive one and he contorts his face directly into his pillow, cutting off his air supply completely. This bedtime seizure is lasting about 45 seconds then he is settled for the night.

Overall, we have actually been able to get decent control over Malachi’s seizures with him having 3-4 a day. And he has had a better week with oxygen levels and comfort. He has been swimming like a fish with friends and he has taught himself all kinds of new tricks, which he is extremely proud of. I was able to grab a video to share some of them with you!

Malachi is such a cool kid. His personality and sense of humor is incredible. I didn’t take many pictures this week but I thought it would be fun to throw a few flashback photos of Malachi on here from his “newborn” photo shoot after graduating from our 112 day stay in the NICU. He was just over 6 pounds, had a broken femur, and was about to start a casting process to fix his little legs and feet. But I remember taking these photos and feeling overwhelmed by the emotion of feeling like a real mom doing real mom things.

Levi is changing every day, growing from a toddler to a long legged little boy. I took a quick video of him sharing his Bible verse from vacation Bible school.

This photo from a few years ago popped up and it made me smile, seeing that sass in those eyebrows even as a baby!

With Jake home I am able to tackle tasks that I typically have to put off, like insurance paperwork and phone calls. Not to mention the formula shortage issue which prevented our shipment from arriving. Thankfully I have some extra cans to get us by but the anxiety this issue continues to create is palpable.

I spent hours on the phone this week coordinating appointments and ironing out all of our medical travel. July is going to rock our world a bit with a week at youth camp, a Vanderbilt trip with Malachi the week after, and a Cincinnati surgery week with Levi the week after that. We will have just a week to breathe after all of our medical trips until Jake returns back to school.

Needless to say we are treasuring our June and trying to squeeze every last ounce of relaxation out of each day.

Jake and I celebrated our 14th wedding anniversary this week. We laughed about how life before kids feels like a movie we watched once that we can vaguely remember. We didn’t really get a chance to celebrate due to Jake having a cold but we will likely go out this week to do something fun as a family.

I always aim for transparency on here, so today will be no exception. I don’t want to ever mislead you or present a picture of our lives that is an inaccurate one…the devil loves to use the comparison game to plants seeds in our hearts and minds. I never want the snapshots of our life we provide to you on the blog to season the way in which you view your life, especially if you are another caregiver parent.

Marriage is work. It is hard work for every couple, and has added challenges for families with disabilities. I have seen so many pyramid charts of “how we are to prioritize the Christian household”. Many of them start with God at the top, move down to spouse, then to children, occupation, and ministry. In our longing for checklists and flow charts Christian couples cling to these visual aids. But we have to remember that God will plant us in seasons of life that don’t follow charts. It is in these seasons that we have to lean heavily on His guidance, His Word, and walk in faith.

The Bible talks often and in detail about marriage (Ephesians 5, 1 Peter 3, and many more). It is clearly an important enough topic that it is extensively covered in God’s Word and I want to encourage you to read through these scriptures and allow God to speak to you through them.

But how do to maintain a marriage when it is not always feasible to prioritize one another? The life or death needs of our children tend to rule our home. Jake and I haven’t been able to sleep in the same bed for at least 3 years. Malachi’s nighttime seizures require intervention and if I can’t get my hands on him quickly he will absolutely suffocate. Levi’s feeding pump also runs continuously at night and with his constant movement while he sleeps I am often untangling and adjusting his machine and tubes throughout the night.

If I had to pick one word for how we are making our marriage work right now it would have to be ”intentional”. Just like a relationship with God, I have to be intentional in my relationship with Jake.

I will admit that there this has been a hard reality to navigate. But over the years as we watched the complexities win out in our home we have had to spend time talking to God about His expectations of us as a married couple. Jake and I are like minded in feeling like we are being called by God to raise these boys. God has given us a very specific task to do, and He is equipping us to continue to do that with a heart of contentment.

And in this role we are given the opportunity to serve and honor God side by side by caring for “the least of these” (Matthew 25:40). Watching the faithfulness of God in this life has been such a gift in our relationship.

But in the last few years I have really been able to settle on a clear and concise plan as I navigate marriage and parenting and I would love to share that with you as I truly believe it can transform any marriage. Matthew 22:34-40 says:

Hearing that Jesus had silenced the Sadducees, the Pharisees got together. One of them, an expert in the law, tested him with this question: “Teacher, which is the greatest commandment in the Law?”

Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself.’

 All the Law and the Prophets hang on these two commandments.”

We can organize the pyramids. We can read the books. We can go to the workshops. But in the end, the Bible is so incredibly clear what our priorities should be. Loving God with every ounce of your being. And then loving your neighbor as yourself.

I believe that if we are intentional in keeping our eyes focused on these two things then so many relationships, roles, parenting, and circumstances in our lives have the opportunity to be transformed in Christ.

I have found that the driest seasons in our marriage have been when one of us has drifted a few steps away from the Vine.

Please continue to pray over our marriage and the things we have yet to face as parents. Please pray against the specific ways the devil gets his foot in between us….bitterness, finances, times of uneven sacrifice, future opportunities for blame.

I am reminded of the verse 1 Peter 5:8-9 ”Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.”

And thank you for continuing to listen to me ramble each week. It is good for my soul.

Much love,

Leah

Reality Check

This week has been a hard one for our Malachi as he has been having a little trouble maintaining his oxygen levels. This has been a mystery as he isn’t displaying any outward signs of sickness but he does sound a bit junky in his throat.

Unfortunately this change happened within 24 hours of his scheduled pulmonology check up (the lung doc). We had to be there bright and early and Malachi had stayed up until 4am the night before. So I let him sleep as long as possible and then put him straight into the car to make the one hour drive to the hospital. I checked his oxygen right before we pulled out of the driveway and he was a sturdy 94. But when we checked into the appointment his oxygen was hanging in the mid 80s.

It seems that some of the mucus in his throat shifted on the drive and settled, making it difficult for him to pass air. Usually 88 is the lowest we let it go without intervention so the respiratory therapist was brought in and started some supplemental oxygen. When that didn’t seem to help they gagged him with a catheter tip which caused him to cough up some junk in his throat. Thankfully his levels popped up into a safe zone after that intervention but the whole incident led to some hard conversations with the doc.

I am not mentally prepared to try to summarize things. But long story short, we now have several tanks of oxygen, an oxygen concentrator, a medical grade pulse oximeter, and a portable suction machine that needs to be with us to prevent being admitted in the future.

This did some unexpected weird things to my psyche. As you know we spent years dealing with oxygen tanks and concentrators for Levi and sending those items back to the medical supply company when he no longer required them was such a victory.

As I watched them bring in tanks again and fire up the concentrator the hiss of the machine made me queasy. The triggers in our world for my anxiety are very sneaky and very prevalent.

In addition to the square footage all the extra gear takes up, it also adds a whole host of refill items to call in each mont: cannulas, tubing, sensor strips, catheter kits, suction machine parts, and the list goes on.

For now I am trying to keep Malachi’s airway as clear as possible by using his cough assist machine in the mornings and we also started him on a new allergy medication. He is still just a tad uncomfortable and his oxygen levels vary throughout the day. He is also not sleeping well at night, so I am hoping whatever is aggravating his system can disappear quickly.

Because of his instability he wasn’t able to do all of the fun things brother got to do this week, so we tried to make up for it with lots of special treats.

Levi and I headed to vacation Bible school this week which kept our evenings pretty busy.

I taught his age group and really this was the first time I had been in an ”educational” environment with Levi and his peers. The first night they worked on a craft that involved coloring and I couldn’t help but note the very stark contrast between Levi’s ability compared to his peers.

To be honest, it set me into a bit of a panic as I started to wonder why. Is it the spots of brain damage? Is it because I haven’t challenged him enough at home? Is it due to his vision being compromised? Or his cerebral palsy affecting his fine motor skills? I had to talk myself down a bit and remind myself that it doesn’t matter if he can do age appropriate things. He is a walking miracle and he will move at the pace God sets him on.

This week a Facebook memory popped up of Levi from 2018. Seeing this video reminded me of how good God has been in our story with Levi.

And socially this kid is a hoot. We still have the youth over to the house often for dinner and Bible study and watching him with the ”big kids” makes me smile.

I am struggling with mom guilt as I realize I don’t have any post worthy photos of Malachi from this week; it has been such an up and down week for him. But I do have this sweet photo from his school a few weeks ago.

Speaking of school, we have made the decision to homeschool Malachi next year. With the morning routines we have to do with him to help him breathe well it is very logistically difficult to get him out the door to go anywhere before 11:00. This year he was only able to attend school maybe 12 times throughout the year, and even though he thoroughly loves it we just have to find a different route for Malachi.

We were approved this week for an Individualized Education Account through the state that we did in 2020. This puts his state funding towards his education on a debit card for us to use for homeschooling. We are able to hire tutors on it and get him a curriculum that best suits him. They are incredibly strict (as they should be) on what it can be spent on but it helps us create a school year that is in Malachi’s best interest.

I often get asked about Levi starting school, and especially after this week I don’t think he is quite ready for that yet. In an ideal world I would put him in a local Christian school down the road for Kindergarten but I will likely end up homeschooling him as well.

Like I mentioned before, the equipment delivery day stirred up some major emotions. As each piece was brought in I had this reality check that these pieces will likely not leave my house ever again. They will now become a part of our landscape as we build a small hospital for our Malachi to live out the rest of his life. It served as a reminder to me that Malachi’s health will only continue to grow more complex and out of my reach to ”fix” without these devices. It took me down into the valley of the shadow of death again and visits to that valley are so humbling, as I realize my true helplessness as Malachi’s mom.

Ugh. Such dark thoughts. Such desperation within my soul, it makes it physically hard to breathe.

But those visits into that valley aways circle around to the hope that I have in Christ. I know I use this verse often, but God has been refreshing my weary soul through it so much lately as I cling to its words.

2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

This week I have found myself praying over Malachi’s death. Not praying for it to happen, but praying that when the time does come that God takes him heavenward in a way that is covered in His peace. As I have been praying these prayers my mind flashes back to so many pivotal bedside moments in the hospital. Moments that I was sure Malachi was making that journey home.

When I became a mother I never imagined that I would so frequently be praying over my child in this way. It feels…just…wrong to even utter those prayers. But they come from deep within me, from a place I didn’t know existed before I became a mother.

What a faith building and heartbreaking journey these last 9 years have been. And I pray for decades more with my sweet Malachi, watching God perform tiny miracles day by day in his life.

I hope that your sideline seat watching our lives through this blog has been able to spark your faith and perspective as much as it has mine.

Ephesians 3:20-21 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Much love,

Leah

A Time for Everything

We have had a week of adventure! Play dates with friends, trips to the playground with cousins, rides in the “little truck”, and lots and lots of swimming.

I have been having some reality checks this week and I am realizing that physically I may not be able to keep up with helping Malachi participate for much longer. He is growing so much right now and safely maneuvering him without accidentally hurting him is becoming a challenge. Both Jake and I are showing signs of wear and tear from overusing muscles we typically wouldn’t be using. But aside from our body whining, our greater concern is Malachi’s mental health.

Malachi is very aware of being excluded so balancing these things is going to be difficult. But for now we will keep doing the best we can to help him live life as a 9 year old looking for adventure and fun.

We had some hospital days this week and Malachi had to get some more blood work done to check his liver enzymes (which are perfectly normal). His ability to handle things that I even struggle with is so inspiring to me. And Levi cried on behalf of Malachi during the blood draw. Levi’s empathy is unmatched.

This week each year hits my heart in some special ways. Malachi spent 112 days in the NICU at birth and May 27th, 2013 was the day we brought him home from the hospital. It was the first time he was wire free. The first time we held him truly unsupervised and unmonitored. The first time we truly felt like parents.

Malachi had grown from a 1lb 12oz micropreemie into a 6lb four month old with a broken femur and a host of medical conditions. I remember staring at him the whole ride home, watching him breathe, as Jake nervously gripped the steering wheel. Then I remember not wanting to sleep that night, gripped with fear that something bad would happen to him if I closed my eyes. But the exhaustion took over and I remember saying a prayer to God and asking Him to send angels to watch over Malachi as we slept.

I had to choose surrender.

And I daily continue to have to choose surrender.

My body, my brain, and my heart are simply not strong enough to live this life apart from God’s help and guidance.

I have been reading Ecclesiastes over the last few weeks and I really feel like God is drawing me to do some digging into Ecclesiastes 3. It is a scripture passage that is cited and used in so many settings but as I have been reading it with fresh eyes this past month I have spotted things I 1) don’t understand fully and 2) never noticed before. That is a very clear indication that I need to spend some time studying the context and commentaries surrounding this chunk of scripture.

But there are a few of these lines that speak DIRECTLY at some of the things I am struggling with in my life right now. And I am confident that something will speak to you within these verses about a current situation you are dealing with.

Take a minute to read through the first half of this chapter and do any of the lines prick your heart and mind?

Ecclesiastes 3:1-10

There is an appointed time for everything. And there is a time for every event under heaven—

A time to give birth and a time to die;
A time to plant and a time to uproot what is planted.
A time to kill and a time to heal;
A time to tear down and a time to build up.
A time to weep and a time to laugh;
A time to mourn and a time to dance.
A time to throw stones and a time to gather stones;
A time to embrace and a time to shun embracing.
A time to search and a time to give up as lost;
A time to keep and a time to throw away.
A time to tear apart and a time to sew together;
A time to be silent and a time to speak.
A time to love and a time to hate;
A time for war and a time for peace.

What profit is there to the worker from that in which he toils? 10 I have seen the task which God has given the sons of men with which to occupy themselves.

I keep asking God if there is something specific He wants me to share with you all this week, and He has led me to this scripture and nothing more.

When He does that I assume it is because the scripture alone (not Leah) needs to do some talking to someone reading it. If you haven’t spend time studying scripture before I want to encourage you to pick one of these verses and start there. Read the verse in several different versions and note the similarities and differences in the words they each use. Type the scripture into Google and put the word “commentary” after it and read several different links that pop up.

Spend some time in prayer asking God to help you be able to apply these verses into your own life and your own current situations. Trust that the Bible is living and active and watch God speak to you through it this week!

Malachi heads back to the pulmonologist this week to talk about his lungs and the new treatments we have been trying with him. Please continue the prayers for our family.

Much love,

Leah

Dual Citizenship

This week Malachi had his annual appointment with the neurosurgeon. As you probably already know, Malachi was born 4 months premature and had a very traumatic birth. During his delivery he was deprived of oxygen causing his brain to start hemorrhaging on both sides. They give a grade to brain bleeds with 4 being the highest you can have, and Malachi was given a grade 4 brain bleed on both sides of his brain.

This significant level of brain damage can cause a host of issues, but one of them that can often happen alongside of the bleed is hydrocephalus. In very basic terms this is when CSF (cerebral spinal fluid) can get into the ventricles (a gap on each side) inside of the brain but all the exits for the CSF are blocked. So the brain begins to fill with the trapped CSF leading to a larger than normal head and lots of issues.

When Malachi was 4 months old he had a VP shunt placed into his brain to give an exit to the CSF. The shunt is under his scalp behind his left ear and about 3 inches long. It has a tube that diverts the fluid down into his abdomen where it can be absorbed by the body.

Statistically these machines will fail. When they do it will present with lots of symptoms that mirror other illnesses so it is something we watch very closely. In fact, most of the times we end up in the emergency room it is one of the first things they like to rule out with a CT scan. If Malachi’s shunt were to ever stop functioning it would be an emergency situation, likely requiring a surgery.

They can adjust the machine using a magnet outside of the scalp instead of physically having to touch it which is really cool technology.

Malachi has had his for over 9 years now and we have been very blessed to never have a malfunction! We still meet with the neurosurgeon at least once a year to make sure we are all on the same page and we periodically do imaging to make sure things are still flowing as they should.

These appointments are less than 5 minutes long (not complaining) but it takes an hour to drive there and an hour to drive back (okay, complaining a bit). So I usually try to pair these with something fun for the kids.

The zoo is about a mile from the hospital, and Malachi loves jaguars. We created a narrative years ago with him that these particular jaguars must remember him because they come over to the glass when Malachi visits. This was all fun and games until a few years ago when the jaguars were asleep. They didn’t come to the glass and Malachi cried his little eyes out.

So we changed the narrative to include all the possible disappointments we might face. On the way to the zoo I rolled down the van windows and told the boys to yell loudly to make sure the jaguars knew we were coming. Much to my surprise Malachi started shouting louder than ever before. He shouted from that point…all the way into the zoo…and literally all the way to the jaguars. And by golly they were ready for him, immediately coming over to the glass.

Malachi was so proud. And I was so relieved. At our zoo I can get Malachi out of his chair and get him right up against the glass where he can track the jaguars with his very limited eyesight. We spent a solid 20 minutes with them before we packed up and headed out.

We spent almost every evening this week outside, trying to enjoy the cooler evenings before the summer heat hits. And we have the mosquito bites to prove it!

We played on the playground, swinging high enough to give momma a scare.

We swam in the pool- and you can tell from these photos exactly how Malachi felt about the experience.

Watching Levi swim stirs my heart so much. I can’t help but think back to those pivotal moments in the hospital, talking to surgeons about the need for a trach. Swimming like this would not have been possible for Levi with that device. Each and every time he splashed in that water I can’t help but feel an overwhelming sense of thankfulness to God for helping Levi live a trach free life.

Jake has one week left for the school year and our summer will officially kick off. We are back and forth to the hospital over the next two weeks to do our check ins with the epileptologist and the pulmonologist. But life is about to calm down to a wonderful crawl for our family.

Each week we meet with our youth group at least once for Bible study, relying on God to guide us to what He desires for them to hear. Some weeks I will prepare a lesson only to have God divert me a different direction.

This was one of those week where God took me from 2 Timothy to Hebrews 11 exactly one hour before class began. As I read the chapter so many things jumped off the page at me, but I could’t help but focus in on this chunk of scripture.

Hebrews 11:13-16

“All these died in faith, without receiving the promises, but having seen them and having welcomed them from a distance, and having confessed that they were strangers and exiles on the earth. For those who say such things make it clear that they are seeking a country of their own. And indeed if they had been thinking of that country from which they went out, they would have had opportunity to return. But as it is, they desire a better country, that is, a heavenly one. Therefore God is not ashamed to be called their God; for He has prepared a city for them.”

I don’t know that I truly understood our roles as dual-citizens, citizens of the world but also citizens of heaven, until after I had Malachi. I didn’t fully understand the longing for heaven that burns within my soul now.

As I have grown in my faith heaven is no longer an end destination, but it IS LIFE. Our walk on this earth is simply a prologue to a beautiful, heavenly story.

But as I read the scripture passage above so many truths popped off the page at me.

”Having confessed that they were strangers and exiles on the earth.”

What beautiful conviction is held in these verses. The balance of living in this world but not conforming to it (Romans 12:2) should give us the feeling that we are strangers and exiles. Our movement with God should be so fluid that we are living each step according to His will instead of our own, even when that means we don’t get the chance to settle.

We are called to live as citizens of heaven while we continue to walk as citizens of the world. What a sharpening challenge for each of us to focus on. As Christians we are all pilgrims on a journey, much like those spiritual giants we read about in Hebrews 11. We aren’t driven by tangible rewards, but rather we are driven by a hope that burns within us.

C.S. Lewis states in Mere Christianity, “If you read history you will find that the Christians who did most for the present world were just those who thought most of the next”.

We can complete a whole lot of tasks on earth, but if we look honestly at the things we are putting our time and energy into can we point to eternal value in them?

“But as it is, they desire a better country, that is, a heavenly one.”

Oh how I desire a better country. For myself and my children. But that desire has to simultaneously burn alongside this earthly journey God has placed us on.

Ephesians 2:10 ”For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them.”

Please continue to pray over our family, and specifically for continued wisdom over medical decisions with our boys. With major surgeon talks on the July horizon for both boys we have to start mentally preparing for some of the decisions we will have to make. And please pray for sleep. Malachi has been staying up until 3am and my mind is mush.

God bless,

Leah

Planted

This week has been filled with so many moments of gratitude.

Over the last seven days God has gifted me with ”His eyes” and the ability to see the many miracles we have been given. I am thankful for a God that knows when I need these snapshots!

I am a member of a parental support group for Levi’s primary diagnosis (idiopathic bilateral vocal cord paralysis). This week I read post after post about the many significant issues that come hand in hand with this diagnosis…

Many children with BVCP cannot speak. Many cannot eat safely. And many have trachs and are continuing to attempt different surgeries to get the trach removed.

Scientifically the fact that Levi can breathe, eat, and speak with paralyzed vocal cords is absolutely a miracle. When we signed consent for BIG surgery at 4 months old we did so knowing that we were choosing trach free breathing in exchange for his voice and his ability to eat. My heart mourned that I would never be able to hear either of my children clearly say mama. The fact that he has been given all of those functions is such a special gift from God. And it is so illogic from a medical stand point that we can’t deny the miracle.

I watched today as he polished off two chicken fingers with ease and I felt such gratitude deep within the pit of my stomach.

Another reflection moment came at horse therapy as I watched Levi swiftly climb the fence to get a better look at Malachi on his horse. As I watched him navigate the fence with such ease I glanced back to those many moments in therapy simply trying to get Levi to stand up. I remember choking back tears as I watched him fight so hard to do simple things.

I think that is something special needs moms don’t talk about as often as we should…the emotional pendulum. We can find such pride in a single moment and almost immediately it can become a moment of sadness. Our frame of reference for success is such a different one than typical parents.

This week I was cleaning the bathroom and had turned on a movie for the boys. I could hear some faint commotion and I went out to investigate only to find that Malachi and Levi were not in the living room where I had left them. Levi had pushed Malachi’s chair into the master bedroom and when I questioned him on it Levi’s response was a very innocent: ”Me just wanted to hang out with Malachi.”

Malachi clearly loved the field trip and I made sure Levi knew he needed to get mommy’s help transporting Malachi next time. But their moment of just hanging out as brothers really touched my heart and I became overwhelmed with gratitude that these two boys have the bond that they do.

Malachi’s tummy aches have been keeping him up this week and we are still struggling to find a solution that allows him to rest at night and get good sleep. We meet with lots of specialists in the next two weeks and I am hoping one of them may have insight on keeping Malachi comfortable.

Speaking of specialists, Levi went to the eye doctor this week and the doctor said he is worried that Levi may have optic nerve damage in BOTH eyes now from his oxygen deprivation early on, not just the left one. There is a test that we can do to measure the thickness of the cortical nerve to see how much damage has been done but Levi is not cooperative enough at this age to do it.

At this point I have just had to give the issue over to God. There is nothing that can be done to reverse the damage if there is some inside this nerve, so I am choosing to not focus on that new information. This is an issue that glasses or a prescription cannot help so we are continuing to attempt the glasses to protect his ”better” eye from any potential danger in the world.

Every week in our lives has hard things hidden throughout. We have reality checks, disappointments, and lots and lots of unknowns. But even amidst the chaos there are so many moments of pure joy, that can only be credited to God.

The joy of me and my two amazing boys piled on the couch, giggling at a new episode of Peppa pig.

The joy of my four year old asking for a turkey sandwich cut into triangles.

The joy of Malachi giggling uncontrollably because he intentionally peed on me. And the follow up giggles from Levi when he sees what Malachi had done.

We travel a hard road full of emotions, but I am so thankful for the variety.

Psalm 1:3 ”He will be like a tree firmly planted by streams of water, which yields its fruit in its season and its leaf does not wither; and in whatever he does, he prospers.”

What beautiful imagery! Our family has been planted- placed by God- in a very thought out place next to streams of life giving water. Sometimes feeling ”planted” can create a fight or flight in me.

But I believe that the more we embrace our planting from the Lord the more deeply our roots dig into the soil and drink from the Living Water.

The fruit will continue to yield in its season, and sometimes we won’t always see the growth that we long to see. But our season of growth is coming. And laying eyes on that fruit reminds us that “He who began a good work in you will carry it on to completion until the day of Christ Jesus.” (Philippians 1:6)

Much love,

Leah

Consolations

This has been a very special needs week.

We tackled lots and lots of phone calls, and have officially scheduled Levi’s Cincinnati week. He has to meet with surgeons prior to surgery day and they try really hard to get these appointments as condensed as possible to avoid us having to stay extra days. These are tag team operating room trips with several different specialists coming into the OR in the same block so he only has to be put under anesthesia once.

Unfortunately the surgeons did not have any June availability so we had to move it to July. This means that I will have to be in Cincinnati with Levi for a week then immediately switch kids and head to Vanderbilt with Malachi a few days later. Not ideal but we will make it work.

Last summer the surgeons mentioned possibly wanting to go ahead and take tonsils and adenoids out during this summer’s procedure but the nurse practitioner mentioned that they require a 10 day hospitalization/local stay after to watch for bleeding. Our schedule won’t accommodate that right now without having to reschedule Malachi’s big appointments with the spine and orthopedic surgeons, so we will talk with surgeons to make sure it is still necessary and will have to schedule that for another date.

A very big part of our life is keeping track of medical supplies and prescriptions. Every month I am refilling at least a dozen medicines from regular pharmacies and specialized pharmacies, formula and g-tube supplies, and diapers. Every three months I refill g-tube replacements and cough assist breathing masks. It requires me to be very aware of our supply and on my game.

It also requires lots and lots of math. Insurance won’t process refills until 5 days before it is due…and some of them take 3 days to ship so I have a two day window to get that refill ordered. And running out of these things is just simply not an option. One day without a seizure med can have devastating consequences on my boys.

This week I called our formula provider and they informed me that the formula the boys use is backordered and had been for three weeks. A similar formula had been recalled recently and all of those users switched to ours leading to supply issues. I was down to 5 cans, and we use one can a day between the two kids. For Malachi it is his only source of nutrition and calories and Levi gets 23 ounces at night (about 700 calories). It is a specialized amino acid based formula for older children that is considered ”elemental”. That means it is already partially broken down making it easier to digest. When we were trying to find the right formula fit for the boys this was the ONLY one that didn’t lead to vomiting.

The supply company told me that I could call the doctor and ask they to send in a prescription for something they have in stock, but the amount of drama that would create in the boys bodies made that an absolute last resort.

I found a very limited supply online but it is marked up to $70 per can (normally around $25 per can) and with the rate of consumption that would cost us $2,100 for a one month supply. So that route was quickly shut down. They do not sell this formula in stores, so I started to panic a bit.

And to be honest I got a little frustrated at myself…for several months we were getting a few extra cans and building a bit of a surplus stash. I felt guilty having insurance pay for something we weren’t always using so I had them hold the extras for a few months. Oh boy, how I regret that decision now!

Thankfully through Facebook I was able to track down another special needs mom in Pennsylvania who was willing to ship us some of her excess as long as we paid the cost of shipping. She will be sending me a batch tomorrow which will arrive on Friday. But that left me with three days without formula.

I planned to start rationing what I had left and watering it down so it would stretch a bit further, and I gave the situation to God. The mom guilt was thick that I didn’t have a backup plan in place.

Later that evening I received a text from someone that lives less than 5 minutes from me. Now let me stop and remind you that I live in a VERY small town. Not a big city.

She said that she ordered some formula for her baby a few months ago and the company accidentally sent her the wrong kind. She called them back to tell them and they sent her a replacement and told her she could keep the wrong order so she put it in her cabinets.

When she saw my Facebook post she went and pulled out those cans and BOOM they were a match. When she texted me to offer them I truthfully couldn’t believe it. The chances of her having the exact formula we needed were so incredibly small. But when she sent me a picture I felt chills pop up on my arms. I asked her how many cans she had and y’all…she had three cans.

Three cans.

The exact amount I needed to sustain my boys until our shipment from Pennsylvania comes.

This is such a clear and perfect example of the providence of God. God sees our needs before they manifest and He has already orchestrated the rescue. What a faith building moment these three cans of formula have provided for me. And hopefully for you too.

Matthew 7:9-11 ”Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!”

I love watching the Bible come to life in such a living and active way!

Little Levi heads to the eye doctor tomorrow (shhh don’t tell him yet) after the boys therapy appointments. These appointments oddly rank up there with being some of our most stressful and emotionally challenging.

Levi has been using his imagination so much these days and watching him enter his own make believe worlds is so much fun.

And we have to take a minute to talk about how amazing Malachi is.

On Friday he went to school for about two hours. Late that evening I asked him if everyone at school was glad to have him back and he signed ”No”. His reply was very fast and serious so I continued the questions.

Mom: ”Was someone mean to you today?”

Malachi: signs YES emphatically

Mom: ”Was it an adult?”

Malachi: signs no

Mom: “Was it a student?”

Malachi: signs yes

I kept the conversation going trying to get more details and narrowed it down to it being a girl in his classroom and she did something mean to him (rather than said something mean to him).

I then asked him if he was using his imagination and the question seemed to offend him as he angrily signed no at me.

The next morning I brought up the topic again and he verified all the details exactly as he did the night before. So I called his nurse to talk to her and see what had happened. I wasn’t mad at all…just really curious as to what had happened! I knew if it was something serious they would have told me right away.

She thought about the details and said that yes, one of the students had crawled under Malachi’s wheelchair and the teachers made them get out from under there. The student angrily punched the back of Malachi’s wheelchair in frustration and got in trouble.

But the fact that my non-verbal child communicated all of that with me brings me so much pride. What an amazing child Malachi is. And what a blessing he is to me.

We celebrated the moment big time, hoping the positive reaction would encourage him to tell me more things in the future. I just love him so much.

My very sweet friend has been hard at work, sewing new bandanas for Malachi and I have to share her handiwork! There is a company that sells these for $16 each and she graciously sewed us dozens at cost. Malachi loves being able to choose which one he wears each day.

Transparency time.

This week has been incredibly hard on me. Back in 2020 when Covid started to spike I found myself having trouble breathing. It was so bad at times I thought I would pass out and I went to the doctor to have some tests run. After a few weeks of testing I was able to be cleared from all cardiology concerns and it was diagnosed as anxiety. I started a medication but it made me feel so loopy and I didn’t feel like I could safely care for the boys and drive them on it.

After a few months I stopped taking those meds and the big anxiety issues disappeared. But last Sunday that familiar breathing issue came back and has stayed with me throughout the week. In addition to the breathing issues my body started breaking out in stress hives. I usually get those during long hospital stays with the kids or the more intense surgeries when my body and mind just can’t cope with reality. But these seemingly came out of nowhere.

In the grand scheme, this week has been a vacation from some of the harder ones we have dealt with, so I have been having such a hard time figuring out why my anxiety has been triggered. Yes, there have been lots of phone calls and hiccups in the normal this week but that usually isn’t enough to throw me off like this.

There is a Corrie Ten Boom quote that says: ”Worrying is carrying tomorrow’s load with today’s strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying does not empty tomorrow of its sorrow; it empties today of its strength.”

What a beautiful quote that absolutely summarizes what this week has felt like for me.

Last week I ended the entry on this verse from 1 Peter 5, and as the week has gone on it has replayed in my head on repeat.

“Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time,  casting all your anxiety on Him, because He cares for you.”

I have been trying so hard this week to cast those anxieties onto Him and no matter how much a heap into my hands and toss at God it still hasn’t fully left me. So what do we do when we are casting our anxiety on Him but it still is very present?

Psalm 94:19 “When my anxious thoughts multiply within me, Your consolations delight my soul.”

Even in my most anxious moments this week, God has been very present and very gracious to me. He has given me so many reminders that He is working on my behalf. And I choose to believe that this anxiety within me is meant to slow me down to be able to really watch God work. And as the verse says, His consolations have delighted my soul and shown me the love of the Father.

God is absolutely able to remove this anxiety from me in an instant. So when He chooses not to it gives me a chance to evaluate thy “why” and look for the refinement that may be taking place within me.

Please pray for our family this week as we muddle through the mundane and try to sort through supply shortages. Malachi’s diaper company is no longer accepting his insurance and we have been paying out of pocket for those while we try to find a provider. With the new Monday, Wednesday, Friday antibiotic Malachi is now having diarrhea on Tuesday, Thursday, and Saturday and we are flying through diapers to try to prevent skin breakdown. I need God to open those doors wide as well, as none of the 8 we have called will accept his type of insurance. I guess prayers of endurance for me are needed for those phone call days.

And please say prayers of peace over Levi tomorrow at the eye doctor.

Much love,

Leah

Surrender

I can’t help but get excited as we inch closer to summer and the luxury of having Jake home!

But with the entrance of summer comes the kickoff of our annual medical traveling. I have been working with Cincinnati Children’s this week to try to finalize surgery and specialist dates for Levi in June. And we already have our July dates established for Malachi to visit the orthopedic and spine surgeons at Vanderbilt. We try to utilize as many summer days as we can for the big appointments so Jake can preserve his days off from work.

In special needs families, medical equipment delivery days are like Christmas mornings! The process of getting approval and parts in is extensive, typically taking 4-6 months from start to finish. This week Malachi had a new activity chair delivered called a PPOD. We have had a smaller version of the same chair before and loved it but Malachi outgrew it and we needed the next size up. Here is a photo of the old one for reference.

The smaller version was shorter than a couch cushion so we expected the next size up to be just slightly larger. But when the new chair pulled up in the back of a pickup truck I couldn’t help but start laughing. It is absolutely ginormous. It even comes on its own push cart, complete with brakes.

The new chair sits Malachi flush with the countertops in our kitchen and he feels like royalty rolling around in it. We call it his Spiderman chair and it really is a wonderful chair. I am definitely not complaining, as insurance hasn’t ever covered these types of devices for us before. We are very grateful for the massive contraption and the comfort it provides Malachi.

Having multiple options for him to sit in is so important for positioning and pressure sores as Malachi grows.

I did have a bit of mourning creep in, remembering that the larger he gets the larger the equipment will also get. Just a reminder to me that the physical requirements of caring for growing Malachi are going to get more difficult. But I quickly pushed those thoughts out of my mind and raced him around the new track we have created in the kitchen and living room.

Levi is in a phase of life where he is also changing very quickly. His ability to speak in full sentences is so much fun. And he loves to learn new things.

He loves pretending to be a doctor and tries to do check ups on the dogs often. His doctor kit has a cast to put on broken arms which he likes to use on Malachi. A few weeks ago he went to put one on the dog, Tuck and quickly gave up, exasperated and saying ”Tuck has no arms.”

If I am being completely honest with you, this week has been a haze of monotony. Malachi’s mornings have been rough as he processes the pollen in our area, and neither boy is sleeping well. We circle our days around the same routines, each day looking a whole lot like the one before it. It is a hard phase of life, as I can’t point at my day and be proud of a lot of achievements.

On Friday I had the honor of getting to speak at the KDCCW Annual Convention, a convention for catholic women in east Tennessee that was held locally this year. I have had several months to prepare and God and I have been spending a lot of time processing exactly what I was supposed to share with them.

After the weeks of monotony we have been cycling through it has been such a good and welcomed distraction for me to dwell on over these last few months, and an excuse to immerse myself in the Word of God.

I used the framework of our testimony to drive the boat, but added in some of the major life lessons God has been writing on our hearts through the process. I thought it might be fun to share some of these with you over the next few weeks and allow God to develop them further on the blog. Many of these I have already shared with you in the past, but it never hurts to hear the scriptures again.

Lesson #1- Surrender.

Sounds basic enough, right? But surrender can be tricky. When you read that word does it strike you as a good thing or as a bad thing?

In many situations it can be a bad thing, like in the context of war. In war surrender is an admission that you are not capable of doing anything else to secure the victory. You have exhausted all other battle strategies without success and the only thing you have left to do is surrender. It is the last option.

But in a relationship with God surrender is such a beautiful thing. It is when you cloak yourself with humility and recognize that God’s power can be made perfect in our weakness (2 Corinthians 12:9). Surrender allows God to take ownership of a situation, acknowledging that we cannot do it apart from Him. It is a gift of love to God to surrender some of our most important decisions, stressors, and trials over to Him, trusting that God will carry them as He guides us.

In our walk into parenthood we have been called to surrender so many things to God…our visions, our expectations, our dreams, our timelines. We have had to surrender those things on the altar and we continue to fight the temptation to run back and snatch them up again.

The Bible is full of beautiful examples of other mothers surrendering their parenting into the hands of God.

Jochebed, the mother of Moses, placed him in a basket and trusted that God would intervene and protect her son.

Hannah, the mother of Samuel, who pleaded with God to give her a son. Hannah promised God that she would ”give him to the Lord all the days of his life” (1 Samuel 1:11). And when God blessed her with a son she did just that, surrendering him to the Lord to be used for His glory in the temple.

What a hard thing that must have been for Hannah. But there is a part of that story that has fascinated me this week. As hard as that must have been for Hannah, the Bible continues to walk us through that moment of surrender for her.

1 Samuel 2 takes us through her prayer after she took Samuel to the temple to stay with the priest, Eli. And it a beautiful song of thankfulness to the Lord that starts with ”My heart exults in the Lord;”

Her moment of surrender wasn’t done out of exhaustion, fear, or defeat. It was done with joy and gladness, knowing that when we place things into the hands of God that He is able to do exceedingly more than all we ask or imagine (Ephesians 3:20). She knew that God’s plans for Samuel would be so much greater than anything she could manufacture.

Voluntary Surrender.

What are you needing to surrender to God today? What thing do you continue to lie to yourself about, convincing yourself that you can continue to carry it without consequence? I am sure if we self reflect we can all find one thing we have been hesitating to fully give to God. And I am sure if we think long and hard enough we can trace all of these back to an arrogance hidden within us.

1 Peter 5:6-7 “Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you.”

Much love,

Leah