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

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

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

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