The Smell of Fire

The theme of the week here has been flexibility. Tuesday afternoon we received a phone call that one of the two surgeons we planned to meet with at Vanderbilt on Tuesday had been called into several trauma surgeries and they needed to re-schedule our appointments. That trip will now take place late August.

I had spent most of the week talking this trip up with Malachi, so having to break the news to him was hard. He was disappointed, but we worked through those emotions focusing on the excitement of getting to do that trip in just a few short weeks.

But add onto that disappointment the frequent chatter of preparing for Levi’s week long trip to Cincinnati. Bad timing for an already disappointed 9 year old and a anxiety ridden 4 year old that requires LOTS of conversations about his upcoming trip.

Levi and I were originally planning to leave for Cincinnati today but have slid our timeline a bit to drive straight from Tennessee to the first pre-op visit on Tuesday. We will meet with the pulmonologist that will be in the operating room on Friday, and usually at this appointment they check for vocal cord movement. He has to be awake for this portion to truly test movement without anesthesia, and it involves sending a camera down his nose while I bear hug him tightly. It is a miserable appointment, but one that just has to be done.

The other surgeons involved have waived their pre-op appointments and plan to just meet with us right before the operating room on surgery day. Which is wonderful news as getting Levi back into the hopsital after his miserable camera experience is always a challenge.

Surgery day is Friday. We always sign off for ”interventions as needed” as they never know what will need to be trimmed (suppraglottoplasty), dilated (balloon dilation), or expanded until they are in there. His procedure is called a microlaryngoscopy and bronchoscopy (ML&B) and doesn’t take very long to do.

After the procedure is finished I get called into the conference room twice- one time to speak with the pulmonologist (lung doc) and the other to speak with the ENT surgeon. The lung doctor will examine his lungs and trachea, testing the fluid and cleaning his lungs to see if there is any sign of aspiration of food, drinks, or saliva. The ENT surgeon will be looking at the anatomy above the trachea, examining the vocal cords and seeing how open his airway is. Sometimes Levi’s epiglottis grows up over the airway and she will do some trimming as needed.

As I have mentioned before, if his vocal cords are still paralyzed at this time, statistically they will never wake up and regain function.

Alright, so how am I feeling leading into this appointment? The answer is complicated.

I would be SHOCKED if they told me his cords were functioning. So no big breakdown of emotions if they tell me they are paralyzed for life. When Levi was a newborn we pursued treatment as though his cords would never wake up, doing several experimental procedures to try to find a trach free route. Had we not gone that route we would be doing some pretty massive surgeries right now, aggressively trying to get the trach out.

I legitimately hate surgeries. I recognize the need, I recognize the blessing that they are…but I still hate them. I hate handing off my children. I hate seeing them under anesthesia. I hate the wait leading up to the operating room. I hate seeing the date and the word ”surgery” on my calendar.

Between both boys I think we are at 45 surgeries? Each surgery carries a host of memories, emotions, and anxieties that a momma can’t easily forget. I will prep for the day with my usual routine…

-Waterproof mascara for the surprise emotions. The ones that gets me EVERY time is the walk from the operating room to the waiting room. I am typically pushing an empty stroller or wheelchair and it just feels so unnatural. Levi is usually crying out for me and I have to turn my back and walk away. Ugh.

-Total random side note: I always try to shower and clean up for surgery days; in the past they have taken a bad turn and we end up in the ICU for several days where showers are rare. We now prepare for the worst, but I don’t anticipate any surprises like these. I also try to dress like an adult rather than comfy clothing because we have noticed it affects the way the staff (nurses, anesthesiologists, surgeon) talks to you. Call me crazy but I fully believe this makes a difference.

-A dark colored shirt in case there is post op bleeding from the boys. The chances of me getting stuck in that shirt for several days is there and hiding the blood spots helps me cope. I also try to wear something with a Bible verse on it to remind me that I am a representative of Him, even on my hard days. I try to think about the others in the waiting room, as each of us are facing our own hard battles in that room, and wear something that might spark their faith.

-A book that I will pretend to read when he is in surgery even though we all know I won’t be able to focus. Having something to stare at in that waiting room is a must. In smaller hospitals they let you wait in a private room, but in large ones like these you are in a room with at least 100 other parents. My people watching nature torments me as I absorb the anxiety and emotions swirling in that room.

-A notebook to take notes during the surgeon talks after and list of questions for the surgeons. It is always a burst of information and if I don’t write it I don’t remember it. Plus my mind immediately drifts to the thought that he is in recovery and the sooner I finish these meetings the sooner they may call me back to be with him. I tend to accidentally forget important questions I mean to ask.

-Freshly cut fingernails so I can’t self mutilate my cuticles when my anxiety kicks in. And a nasty tasting chapstick so I don’t pick at my lips while I wait anxiously for them to call me back.

-A bottle of water for after surgery. I typically dehydrate myself so I don’t require the restroom while I wait. I don’t ever want to be out of the room when they call my name. That is legitimately one of my nightmares, and is fueled by mistakes I made early on in Malachi’s surgery days.

-My hospital backpack. It is large enough to hold 2-3 days worth of hospital supplies in case of a surprise overnight stay. I also pack another bag for the car with emergency supplies if we get admitted.

I have prepped some surgery day surprises for Levi to help distract him a bit. I also have a ”surgery day” shirt for him this year to try to help him with the anticipation of the day. He has been anxiously asking all week long, so I have told him ”when I put this shirt on you, you will know that it is surgery day.” His shirt says: I can do hard things. Which is the phrase we repeat over and over leading up to the day.

We have also added a Bible verse into the mix when he starts to get anxious thinking about the day.

Joshua 1:9 ”Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

In the days in between pre-op appointments and surgery day we will be finding some fun things to do and visiting with family in the Cincinnati area. My goal is for the fun memories to outweigh the bad ones, although I am afraid I am in a losing battle with that one.

Jake and Malachi will be holding down the fort here in Tennessee, and I have been hugging him extra tightly. Malachi and I have such a unique bond and being away from him feels so unnatural. This is the only time all year that he and I are apart.

I have been spending a lot of time in the Word this week, trying desperately to prepare myself for the week to come. As many of you know, Daniel 3:18 has become a “life motto” of sorts, talking about how God is able to deliver us from the fiery furnace, but if He chooses not to then He is still good.

This week I spent some time reading through that chapter again and my eyes focused on a new chunk of verses. The more I have read them this week the more I have adopted them as my prayer for the week.

Daniel 3:26-27 ”…Then Shadrach, Meshach, and Abednego came out of the midst of the fire. The satraps, the prefects, the governors and the king’s high officials gathered around and saw in regard to these men that the fire had no effect on the bodies of these men nor was the hair of their head singed, nor were their trousers damaged, nor had the smell of fire even come upon them.”

Time and time again our family has faced this fiery furnace, and each time God calls us to walk back into the flames. I choose to keep believing fully that our call into the furnace isn’t always meant for us, but rather it is often for the outsiders looking into our lives. Like King Nebuchadnezzar in Daniel 3, from afar he was able to see the presence of God with the men in the fire, and I pray that the same is said by onlookers in our lives.

But these last few times I have entered that furnace I can’t help but look down and find all of the lasting marks, the smell of the smoke lingering in my nostrils and coming back to mind each time I think about re-entering the flames and filling me with a sense of dread.

I have slowly, and unknowingly, made the time in the furnace all about me instead of remembering that God is telling a greater story of deliverance.

My prayer this week is that I can keep my eyes focused on Him. I am praying that both Levi and I can walk out of the furnace this week with the ability to focus on God and His goodness rather than the marks and memories of the flames. That not even the smell of fire would come upon us.

Would you join us in that prayer?

Please also join us in praying for safe and uneventful travels, and for protection of Jake and Malachi in Tennessee.

Thank you for always giving me an ear to listen to my ramblings each week. We appreciate our community of support so much more than I can relay.

Much love,

Leah

Afflictions

What a wonderful, exhausting, and powerful week we just had! On Tuesday we loaded up our teenagers and took them to camp for the week. This is our tenth year doing camp with the youth, and we have gone from 17 campers to 50 (56 if you count my crew and some extra help)!

There is always an incredible amount of prep work required to pull this off every year, and we spend so much time in prayer leading up to camp over these young adults. When we actually get to camp we get to enjoy watching God do His thing, and being present for them as they grow in Christ.

Flashback to the first year I took both kids to camp…

Levi was on oxygen, feeds, and a pulse ox 24 hours a day and we didn’t have a portable oxygen concentrator so I had to haul dozens of oxygen tanks with us for the week in addition to the other supplies for both boys. I was solo that year, living in a hotel room for the week and on the final night we came back to the hotel at midnight to find a giant rat turd on the bed that was most definitely not there when we left for that day. All I could picture was a rat on Malachi in the middle of the night and him not being able to tell me or push it off, so I packed up allllll the tanks, equipment, boys, and checked into another hotel around 4am. That was a rough year.

Since that horrific experience, I have had some wonderful friends that feel led to take time off each year and come along to help me with the boys. We rent an AirBNB and travel back and forth each day, and the boys genuinely look forward to camp with the big kids each year. It is our summer vacation (as unconventional as it may be) and they love it.

God moved in some pretty amazing ways throughout the week and we left feeling so encouraged about the preparation God is doing with these teens to do some big things for the Kingdom of God. I want to gush right now, giving you examples, but I also feel I need to protect the confidentiality of our teens!

Camp days are like no other, most nights staying up with the teens until 2am. The real winners are the lovely friends that came and helped with the boys, tolerating my late nights with the teens and running nightly routines and meds with the boys at the rental.

Levi reading Wonky Donkey to Malachi

We came home yesterday afternoon and we have been taking turns napping all day. I was supposed to leave with Malachi for Vanderbilt on Tuesday but we are going to slide that plan a bit and I will head out Wednesday morning, drive there just in time for his appointments, then spend Wednesday evening doing a few fun things to jazz up his ”trip with mom”. We will stay the night in a hotel on Wednesday because I am not confident I have the mental clarity right now to drive back the same day; that would be nearly 7 hours of driving in one day on limited sleep and lots of stops along the way for Malachi’s needs.

Malachi will be getting x-rays and we will be talking with the spinal surgeon about his new degree of scoliosis and if we need to intervene (surgery) anytime soon. Which we are praying against! And then we will meet with his orthopedic surgeon to talk about his foot positioning and if more tendon release surgeries are needed. His cerebral palsy manifests in his ankles by pulling the tendons extremely tight- tight enough to bring his foot up and out.

Malachi wears AFO braces to help keep them in position but those can only help maintain positioning. Sometimes surgical intervention is needed. Malachi has already had several corrective surgeries on his feet and ankles, several months of serial castings, and pins placed through his foot bones to reform them. But his brain continues to send mixed signals creating more damage.

I am not expecting to hear any new or shocking information at these appointments. There is a pretty good chance they will mention surgery for the feet, and that isn’t an earth shattering thing. If the spinal surgeon mentions surgery being needed, which I don’t expect based on last year’s degree of curvature, I will most definitely have trouble accepting that (meaning I will cry my eyes out in his office). Spine surgeries are rough on medically complex children.

Malachi and I will come home Thursday. And a week from today I will be packing up Levi and he and I will head to Cincinnati. His first pre-op is next Monday and his surgery will be Friday morning. We don’t know what they will have to do in surgery until they get in there and look at his airway, but they usually keep it an outpatient surgery and have us come back in a few months if a larger, inpatient surgery is needed.

Let the road trips begin! We will divide and conquer for the rest of the summer trips, Jake staying home with one and me traveling with the other. I am not looking forward to any of these trips, but also recognize that they have to be done. So we just repeat ”We can do hard things” over and over again until we start to believe it.

Last night I sat down to start planning the details of Nashville with Malachi. I try to find something extra special to do with him each year, and as I scrolled through dozens of options every single one of them was not feasible for me to do with him. I was left with the same few things we always do, which I am sure he wouldn’t mind. But my momma heart wants so badly to give him new, age appropriate experiences. The older he gets, the more limited we are as I can’t carry him safely like I used to.

As I scrolled through all of these amazing activities I could feel emotions welling up inside of me, eventually spilling out of my eyes as I mourned for Malachi. He is such a kind-hearted, sweet sweet boy. He has the mind of a 9 year old and is so aware when he isn’t able to do the fun things other children are doing. I wish our world had so many more options that included all abilities.

If you are a Nashville fan and can think of any ideas we may be missing send me a message! Our usuals are: Rainforest Cafe, the zoo, Build a Bear, movies, arcade (Dave & Busters or Chuck-e-cheese).

Malachi is SO EXCITED about this trip, laughing uncontrollably every time we talk about it. And Levi is crying his eyes out every time we talk about it. The jealousy is thick in our home right now.

The Lord led me to a verse last week that has really been playing in my mind.

Isaiah 29:19 ”The afflicted also will increase their gladness in the Lord…”

As I have read over these words and absorbed them this week they have become a new prayer. Affliction is a very real and present thing in our family, and it has interwoven itself into the fabric of our testimony. We have prayed against afflictions, yet they still remain.

God has chosen our family to bear the label of ”affliction”. It is one that he could easily remove in an instant, so the fact that it remains is proof enough that it is meant to be a major part of our story.

So while God continues to author each chapter in that story, my prayer is that we will be able to increase our gladness in the Lord while we wait patiently for Him to work.

Yes, we bear the label of affliction. But there are so many other beautiful post it notes on our board that would have never been written without affliction also being present.

Please be in prayer for our family over the next two weeks. Pray for good reports, safe travels, and memorable moments of joy!

Much love,

Leah

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