Dual Citizenship

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hebrews 11:13-16

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless,

Leah

Planted

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Leah

Consolations

This has been a very special needs week.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Three cans.

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

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

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

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

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

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

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

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

Mom: ”Was someone mean to you today?”

Malachi: signs YES emphatically

Mom: ”Was it an adult?”

Malachi: signs no

Mom: “Was it a student?”

Malachi: signs yes

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

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

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

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

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

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

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

Transparency time.

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Leah

Surrender

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

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

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

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

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

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

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

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

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

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

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

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

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

Lesson #1- Surrender.

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

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

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

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

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

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

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

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

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

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

Voluntary Surrender.

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

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

Much love,

Leah

Wood & Earthenware

I want to start this blog off by sharing some updates on my sweet Malachi.

After Malachi’s recent procedure we have had to start some new daily rituals, many of which are not pleasant. He has a cough assist machine that we are supposed to use each morning after a breathing treatment with a nebulizer, and it truly looks like a torture device. It has a mask that fits over the area right under his eyes all the way to his chin and you have to press it on hard enough to suction to his face.

Then when the machine starts it waits for him to breathe in and shoots air down into his lungs. On the exhale it pulsate suctions to bring things up from the lungs and out. Malachi absolutely hates this machine, and therefore I hate the machine. But we do notice a difference with his breathing when we use it and we have been educated about the long term benefits to daily use.

And this leads us to one of the hardest parts of parenting medically complex children. We are often expected and required to do painful things to our children to help keep them alive. We have to hold them down for catheterizations and blood draws. We have to distract during IV placements and shots. When Malachi was a baby I had to give him shots twice a day for several months. We drive them to the surgery days, we change them into the hospital gowns, and we smile and try to reassure them that everything is okay. But inside my heart is crinkling with pain and a strong desire to take their hurt away.

Each morning when I do these new breathing regiments Malachi signs no with his mouth. And each morning we work together to try and build our relationship through the hard things. I wait for him to sign to me that he is ready before I put the mask on his face and we celebrate together each day when he finishes the treatment. I am so proud of his bravery and his understanding.

But I have to admit that this is creating some angst in me. I have to look away in guilt from his panicky eyes as the machine does what it is designed to do. When I look at my hands holding the mask to his face and inflicting such a scary thing on him I am showered in this strange guilt. My mind argues with itself, the emotional side of me yelling STOP and the logistical side encouraging me to keep going.

But Malachi never holds it against me and we both relish the sweet cuddles and celebratory dance after.

This boy has such a hard life, but he continues to smile and shine the joy of the Lord.

Malachi doesn’t handle weather changes very well, and particularly when seasonal allergies hit. It is making him vomit in the mornings when we don’t use the cough assist machine and keeping his seizure meds down was a challenge this week.

Levi also seems to be struggling with allergies and his breathing has gotten much louder at night. I called his surgeons in Cincinnati to schedule his surgery with them in June and mentioned we may need to talk about removing his tonsils and adenoids like we discussed last time. This would involve an inpatient admission which I would love to avoid, but I am worried his airway isn’t large enough to continue doing nothing. He is waking himself up several times at night due to his noisy breathing.

Levi’s glasses came in this week and I have to say that he looks awfully cute in them. Today at lunch he said ”I have glasses like my daddy!”

Jake and I have been planning a pretty elaborate overnight retreat over the last several months for our youth group and Friday was the day! As we continued to plan I felt such a peace from God over the details and such a clear direction for the lessons we were hoping they would learn.

We ran an underground church simulation at a local church camp facility for them to help them understand what a privilege it is to worship God freely. They had to hold several secret Bible studies and find the missionaries assigned to their group. They had to try to defend their faith to someone who didn’t believe in God. A portion of it tested their ability to “convert” a secret policeman (a church member playing the role) by walking them through the gospel. And as the final task they had to be led through the woods to the secret church, a chapel in the woods where we held a worship service and had a guest speaker share.

Watching kids fall in love with Jesus is one of my favorite things to witness. It makes me reflect on my own walk with God and flashback to some of the pivotal God moments I experienced at their age. This particular group of teens is very clearly being sanctified and set apart to do some mighty things in their lives. They love God without hesitation and many of them are cultivating a faith that I am praying the devil won’t be able to shake.

2 Timothy 2:20-21 ”Now in a large house there are not only gold and silver vessels, but also vessels of wood and earthenware, and some to honor and some to dishonor. Therefore, if anyone cleanses himself from these things, he will be a vessel for honor, sanctified, useful to the Master, prepared for every good work.”

There are many times when I do not feel qualified to share my faith with others. I feel like an ordinary vessel of wood or earthenware instead of a gold or silver one. But even the ordinary vessels can strive for sanctification (separation from sin and being set apart to serve God) and do the work of God.

Don’t let the devil allow you to believe that you are not qualified enough to talk to others about Jesus.

1 Corinthians 3:5-7 ”What then is Apollos? And what is Paul? Servants through whom you believed, even as the Lord gave opportunity to each one. I planted, Apollos watered, but God was causing the growth. So then neither the one who plants nor the one who waters is anything, but God who causes the growth.”

We are all called to plant seeds of faith everywhere we go, and we are called to water seeds that others have planted. But the glory of the growth rests on God. And when I remember that it makes the faith journey- the pursuit of God- in someone else such a beautiful thing to witness.

Have a blessed week!

Leah

Unstained and Pattern Free

This has been a picture taking week, so I will let those drive the blog tonight!

Today is Easter Sunday! Being on staff at a church, Sunday mornings can get busy. But this morning we were able to snap a quick photo!

This month marks year 10 of being youth directors at our church. Just as a re-cap, Jake is a math teacher and I was a special education teacher…we never expected to be doing ministry part time…let alone for ten years. Ten years ago a few people from the church showed up on our porch and asked us to consider becoming the youth directors at our church. After praying about it we accepted the position and here we still are.

Each year Jake and I spend time in prayer about whether or not God desires for us to stay in that position. And each and every year He makes it clear that we are right where He wants us to be. It continues to be challenging with our unique circumstances but being able to walk alongside our teenagers as they develop a walk with God is such an honor.

Looking back I can see times where we thought we had it all figured out, and God refined us even more through our ignorance and our pride. Being in this role has brought a level of accountability in my walk with the Lord and I am thankful God led us to where we are. Watching kids fall in love with God has been such a faith building thing for me too and we genuinely love studying the Word with them each week.

Alright, now let’s talk about these wild boys.

Both Levi and Malachi have hippotherapy sessions each Monday with a wonderful physical therapist. She saw a post about our friends exotic animal farm and decided to make a trip happen, inviting us along for the fun. I had Jake drive the little truck over so I would be able to get Malachi around without too much of a backache later.

I could post about 30 more amazing photos but then I would be ”that mom” in your eyes so I will refrain haha.

The day was so much fun for both boys but it also served as a reminder to me that the older and larger Malachi gets the more difficult it will be to give him these experiences safely. I find myself wavering between living in the moment and mourning over the future. Inclusion will always be possible and something we prioritize, but the level of inclusion will inevitably have to change as he grows and I am not sure I am ready to process that.

So for now we load him on a camel. We carry him across fields. We sit on milk stools. And we try to make him feel like the 9 year old that he is.

Malachi has a difficult time when he is outside and there are multiple senses being required. He especially has a hard time in sun and in wind, and unfortunately our farm visit had a blend of both. When that happens he shuts down a bit in a protective manner (see the camel photo above as well as the Easter photo), but he does this so he can fully mentally experience what is happening.

In fact, here is a stark contrast to help you understand a bit.

Earlier this week Malachi played with some of his favorite friends right after the sun set. The temperature was comfortable, and there was no wind or sun to distract his senses. And this was the result.

Just pure 9 year old joy! There are so many factors that can “distract” Malachi’s body, but he is capable of so many things.

But back to the farm visit. One of his favorite parts of the day was driving in the little truck and beeping the horn. And just look at those freckles popping out from the sun that day. Sweet boy.

One of the unforseen joys from the day was the dogs sniffing him all over after we returned home, trying to figure out the new animal smells.

So we have Malachi that struggles being outside when the elements are extreme. And then there is Levi who never wants to go inside.

We spend a lot of time on the playground when the sky is overcast, trying to accommodate both boys! I am continually thankful for a playground at the house to help me be a ”typical mom” but still be close to home base.

Levi is really, really entertaining these days and says so many fun things. This week we have been ready the Holy Week book from the Baby Believer series and we got to this picture:

I asked Levi, ”What is Jesus doing to His friend’s foot in this picture that is so nice?”

And Levi replied, ”Cooking it.”

Oh boy. There are so many humbling moments within parenting.

If you have been reading the blog over the last 9 years you will know that Jake and I are a little unconventional when it comes to holidays. And admittedly we aren’t ever sure what we want each one to look like. Due to surgeries, hospitalizations, and ICU stays we haven’t always had the luxury of planning things out.

But I do know that I want each holiday to be an opportunity for them to live out their faith and think of others before self.

Somehow every single holiday in America has been rearranged to involve receiving things. Yes, there are other elements and takeaways sprinkled in but there seems to always be the underlying focus of self. While I don’t feel that holidays are inherently bad I do feel that they have the potential to create an inward look instead of an outward one.

Please know that my kids are well taken care of, spoiled with hundreds of toys, and frequently get and eat candy. They are not deprived of these things. And we participate in things like church egg hunts and we choose and decorate a Christmas tree. But we don’t have many traditions in our home for these holidays as we want to leave room for God to create the framework for those.

There are two specific scriptures that play often in my head around the holidays. The first one is Romans 12:2 ”Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.” Let me just stop right there and note that Romans 12 is an amazing chapter. If you need a good, thought provoking read this week I would highly recommend spending some time with Romans 12 and a highlighter.

There are several words that I am drawn to in this particular verse, but tonight as I read it I keep settling on the word ”renewing”. This word reminds me that the process of sanctification isn’t a one time deal. It is a continual thing that we have to prioritize and welcome into our lives on a daily basis, allowing God to transform and renew us.

But the other phrase I tend to get focused on is ”the pattern of this world”. What are the patterns of this world? Have you ever stopped to process what patterns of the world exist in your life?

For me, holidays are a prime example of those patterns. They are special days that originally were built on very wonderful principles and we have come in and create a pattern to lay overtop of those. And we look at the person next to us to make sure out pattern is similar to theirs.

WE create the pattern based on others instead of allowing God to guide us, stitch by stitch.

Read the final line of that verse: ”Then you will be able to test and approve that God’s will is- his good, pleasing, and perfect will.”

When we are busy focusing on patterns we can allow ourselves to become distracted from hearing the prompts of God. I know myself pretty well, and I recognize my weakness in this area. I can get focused on something and somehow remove God from the process as I take over. Because that is my specific nature and weakness this is something I am trying to stay sensitive to.

I would never be so prideful to assume that you all will share these same convictions, and I hope you are able to see my heart and know that these words are ones of self reflection rather than judgment.

The second verse that often plays in my mind during holidays is James 1:27 ”Pure and undefiled religion in the sight of our God and Father is this: to visit orphans and widows in their distress, and to keep oneself unstained by the world.”

Ahh I could spend so much time on this verse and go so many different directions. Focus, Leah.

This verse reminds me that religion has the potential to become impure and defiled. And when I take time to really reflect on that I can spot times in my own life that I allowed my religion to drift this direction.

But for tonight I want to focus on the final line, ”to keep oneself unstained by the world.”

This. This is the verse. This is the one that drives all of my hesitancies and challenges all my traditions.

If we are called to keep ourselves unstained by the world, but also called to be in this world, are we not being given an impossible task? This is where the grace of God comes in!

But I find myself often questioning how hard I am attempting to keep myself unstained by the world. If I am wearing a white shirt and I desire to keep it unstained, I will avoid putting my hands on all potential causes for stains. It doesn’t mean I won’t ever leave my home or enter an environment with potentially messy things. But instead when I enter ”the world” I will be watchful and cautious, evaluating each things I put my hands to.

So I guess that is the phase we are in with holidays. We are cautious, trying to decide which traditions honor the Lord and which traditions feed self worship.

I am sharing this final thought with you as a testimony, not as a brag moment so please read this knowing the motives of my heart in sharing this are pure.

This year for Easter we talked to the boys about an orphanage in Uganda that was trying to raise money for an Easter dinner for the kids. We talked about what it means to be an orphan and talked about what Jesus would do for those children. Levi was captivated. The concept of not having a mommy or daddy stretched his mind, but then the concept of not having food took it to mind-blowing status. We decided as a family to take the money we could have spent on an Easter basket, candy, toys, or new church shoes and sent the money to the orphanage.

Levi has been thrilled all day talking about them getting to eat a nice dinner. And then my phone dinged and much to my surprise we received a message from the orphanage. They had sent photos from their Easter dinner, full of smiling children with full plates and full bellies. We sat the boys down and flipped through each photo and I watched the light dance in Levi’s eyes as he recognized the joy and power of being the hands and feet of Jesus. And I listened to the happy squeal from Malachi as we described the faces of the children holding their plates.

I don’t know that I am getting this parenting thing right. And I don’t know that I am living out these verses in the way I truly desire to. But I feel this overwhelming call to do my best to keep my family unstained and un-patterned by this world.

This week I will personally be evaluating the ways I have allowed myself to become stained. It is rarely an intentional process, but rather one that happens when we take our eyes off of Christ in one area of our lives and wander away from the Vine for a moment.

But the good news is that the Easter holiday reminds us that Christ shed blood for our many, many sins. The ugly sins, the little sins, the embarrassing sins, and the shameful ones. Ours stains can be washed by the blood of the Lamb.

Happy Easter and may God bless you,

Leah

Accept Their Lot

This week we had to stay close to home base again due to Malachi’s need for frequent diaper changes and medical supplies. I acknowledge that might be too much information, but it is something I never really thought about prior to having a special needs child so I assume you haven’t either. Sometimes the outings just aren’t worth the incredible amount of prep work and unknowns. I am very eager to give him his last dose of one of the antibiotics tomorrow and hope that will make a difference with his stomach upset.

We did venture out a few times this week. Jake’s high school soccer team had a local game so I loaded up the boys to go watch. I let Malachi choose which dog would get to go with us for a bit of training and he chose Shiloh with his signs. I told him he was in charge of making sure Shiloh stayed by his side for the game and he took his job very seriously.

Levi picked out his glasses and they will be ready for pick up in a few days. I am still trying to figure out how to sell him on the idea…he is pretty resistant to wearing them. But I have to say, he looks so cute in them!

Levi is four years old now and wants to be very busy. Every morning he asks me ”what are we doing today?” And when we are going through seasons of needing to stay home he goes a bit stir crazy.

Earlier this week he asked me what our plans were for the next day and I told him some friends were coming over for a Bible study. Later that night I found this sweet pile of clothes he had set out so he would be ready for his friends when he woke up. I don’t know if all four year olds do this, but his foresight to pick out even his socks was impressive to me.

A few more fun snapshots from our week…

I have to laugh out loud when I look at the last two pictures. In the first one there is a beautiful stack of towels folded neatly on the chair in the background. It gives off the illusion I have it all together. But then the second one hits and the giant pile of clothes that are still waiting to be folded (after 2 days) is a more accurate reflection of Carroll land.

It is also an accurate reflection of the amount of laundry we are burning through on these stinkin’ antibiotics!

Tonight I am weary. And I am cranky. And I am feeling hypocritical when I think about writing you a devotional thought, as my heart and mind are at war.

In full transparency, this week has been a very hard one on a psychological level. The medical routines I am running are dictating our daily schedule and by the end of the day I can’t point to a lot of things that we achieved with our 24 hours (aside from keeping everyone alive). Sleep is extremely limited right now, and the 3-5 hours I am getting are broken up by the medical needs of both kids. When my eyes open each morning a feeling of dread overcomes me as I know the rest I received wasn’t quite enough to sustain me.

I get stuck in a mood of dissatisfaction. Have you ever been there before? I could make you a giant list in ten seconds or less of all the things I am dissatisfied with in my life right now.

But as I have been sitting here staring at this screen, God has yet again come through and placed a very specific scripture on my heart. I know this concept may feel foreign to you, so let me explain a bit.

I have been praying ”God if there is something I need to say here, please make it known.” I never sit down to write these with a specific direction to go. I simply stare at the screen and ask God to start writing.

And tonight when I prayed that prayer, the words ”To accept your lot in life is indeed a gift from God” flowed into my brain. It didn’t sound like a scripture, but rather a famous quote from someone like Ben Franklin or some other profound mind so I typed it into google and sure enough, there is was in Ecclesiastes! God is always so gracious to me in providing me with the bread of life when I need it the most.

I am fairly confident it is more for me than for you this evening, but I am going to trust God can make it mutually beneficial for both of us.

Ecclesiastes 5:18-20 ”This is what I have observed to be good: that it is appropriate for a person to eat, to drink and to find satisfaction in their toilsome labor under the sun during the few days of life God has given them—for this is their lot. Moreover, when God gives someone wealth and possessions, and the ability to enjoy them, to accept their lot and be happy in their toil—this is a gift of God. They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart.”

My prayer this week is that God grants me eyes to find satisfaction in my toilsome labor under the sun. I pray that He continues to provide contentment to me within my lot in life, that I embrace and accept that lot instead of clinging to the dissatisfaction that my eyes are drawn to.

And that last verse is a prayer itself: “They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart.”

Because GOD keeps them occupied with gladness of heart. What a reminder to me that the heart contentment I long for right now is created, grown, and multiplied within the hands of God.

Please pray for our family this week, that we experience a bit of relief from upset tummy-aches, seizures, and lots of other small issues that stem from these things. Pray for a rejuvenating dose of normalcy for the boys, so that they can reset their routines and we can all get some much needed rest.

Much love,

Leah

Shaking Arms

Spring break for the win! Jake was able to spend all week with us and we had such a refreshing week filled with family time. Truthfully, having him home this week was such a gift from God as we have been dealing with some sleepless nights.

Malachi started a 14 day round of antibiotic to clear up the current lung bacteria that the cultures showed he was brewing. In addition to that we started his new antibiotic routine to prevent new infections from happening. Just one of these alone would have been tough on Malachi’s gut, but both at the same time has created a bit of…well…chaos.

His tummy churns all night long, waking him up from the discomfort and the seizures that it brings. He is on probiotics, but we really just have to wait this process out and hope that finishing one antibiotic will bring him some relief from the tummy issues.

While I want to be annoyed with these meds I can’t justify it as they are doing their job incredibly well. Malachi’s breathing has been dramatically better, with his oxygen saturations hanging around 96. The best word to describe his breathing is “comfortable” and already we are seeing an improvement in his quality of life. Aside from the increase in nighttime seizures that are likely due to tummy aches, we are seeing a decrease in his daytime seizures in both frequency and intensity.

We weren’t able to leave the house very much this week due to the chaos and the need for medical supplies so we spent time playing games and playing on the playground!

Levi is changing by the day. I could tell you story after story of the funny things he has been coming up with lately. His words and sentence structure have been growing a lot lately and watching his personality develop is such a treasure.

He has such a kind heart and goes out of his way to thank me for things often. This week out of the blue he said: ”Mom? Thanks for being my mom.” The more time I spend around him the more resolute I am to preserve his sensitive spirit and kind heart. I feel so strongly that God has some big things in store for him.

The photos from this collage were all taken the same week each year, starting the year he was born. Jake and I got a good laugh from his 3 year old photo (the green sleeves), forgetting how well his caloric needs were being met at the time haha.

Levi is now only taking tube feeds at nighttime and he eats table foods like a monster during the daytime. He has come such a long way.

Most days I rest in a state of denial, ignoring the challenges our situation can present. I know they are there but it is much easier to not think about them. I had some time this week to tackle the time sensitive items on my to-do list, many of which involve medical paperwork and medical phone calls.

When I am working on those things I have to face reality, so those tasks often take me to a dark place. Which is probably why I ignore them until I absolutely have to. I have to verbalize and write out diagnoses, needs, unmet milestones and each time I have to summarize my child using only negatives it feeds a bitter root that is buried inside. I understand why those hoops require the summary of the bad. Their tangible needs are a result of those differences, so proof is required. But summarizing my child using only the things they can’t do is just so unnatural.

This week another special needs mom shared this photo and it has imprinted itself on my brain.

If you aren’t familiar with the context, this photo is a representation of a story we read in Exodus 17.

Joshua did just as Moses told him, and fought against Amalek; and Moses, Aaron, and Hur went up to the top of the hill. So it came about, when Moses held his hand up, that Israel prevailed; but when he let his hand down, Amalek prevailed. And Moses’ hands were heavy. So they took a stone and put it under him, and he sat on it; and Aaron and Hur supported his hands, one on one side and one on the other. So his hands were steady until the sun set. And Joshua defeated Amalek and his people with the edge of the sword.

My initial thoughts with the story have always been focused on the friendship represented here, and what a beautiful example of what it means to bear another’s burdens. And I could write a thorough devotional on what that looks like in the Carroll journey.

This may be a topic for another day, as I share the loneliness the special needs road can bring. We have had so many teams of ”arm holders” cycle through our lives at different times. But inevitably the weight of our lives grows too heavy for others as well and we find ourselves alone in the mundane with shaky arms yet again.

But for some reason this week the longer I have stared at the photo the more questions I have.

Who was this display of God’s power for? Moses? His friends? The Israelite army below? Or was it meant to simply be a mutually beneficial moment for all?

Why did God call Moses to a task that he knew he couldn’t physically sustain? Why didn’t he require something easier of Moses?

So many faith questions have been brewing as I look at this photo and find comparisons with my everyday. Why has God called me to a life that is so physically and mentally exhausting? Every time I open my eyes I find myself facing a war that I am not qualified or equipped to fight. There are so many factors that are beyond my control with both of my children.

God didn’t call Moses to fight and he didn’t call him to step on the battlefield. God called Moses to be an instrument, a display of His mighty hand and His power. He called Moses to simply raise His hands in surrender to God and watch God fight the battle for Him.

Maybe I am not meant to ”fix” my children. Maybe I am just meant to be an window through which the world can see God’s control over their lives.

But even when we raise our hands and surrender the battle to the Lord our arms can grow weary. And I think that is something we don’t talk about enough in Christian circles. Almost as if we admit our weariness that somehow is perceived as lowering our measure of faith.

Why do we make it so hard to receive help and support? Egos can be a nasty thing. And I am speaking to myself here.

Let’s be honest- sometimes the callings on our lives bring about exhaustion and a stretching beyond our capabilities. I can just imagine the emotions of Moses in that moment, lowering his hands out of exhaustion and watching in desperation as his army fell in battle. The pressure that came with that calling was immense. But again, God called for arms held up in surrender- trusting that God would provide the victory.

As a special needs mom there are so many battles that I can’t fight. I can’t battle seizures. I can’t battle complex airways. I can’t battle cerebral palsy. I often keep my hands busy, trying unsuccessfully to create my own victories. Can any of you relate with this?

But this week I am reminded that God already knows the moment our arms will begin to shake. He already knows that we can’t do these tasks apart from Him. So instead of focusing on the negatives of the situation we have to choose to believe that this moment is a faith growing moment for someone.

Sometimes our glowing inadequacies and God’s work through them are meant to encourage our faith and something they are meant to encourage the faith of those looking in. Sometimes our weak moments are opportunities for others to come alongside of us and get a different perspective.

So if you are like me and you find your arms shaking under the calling God has placed on you, be encouraged that it is in your weakness that God is teaching and refining both you and others. So as uncomfortable as you may be, trust that God is still working through you.

I am very tired today. I am not even sure that all those thoughts made any sense, but I am going to trust that the Holy Spirit can connect the dot with that jumbled devotional and make it something meaningful to your heart.

Much love,

Leah

Renewed Inwardly

I write this blog for many reasons, but one of the primary ones is that it allows me (maybe ”forces” is the better word choice here) to process a lot of thoughts and emotions that I tend to stuff down out of my psyche. This week I have been avoiding processing a lot of things, so when I open the page to start typing I have to take a deep breath and break the walls I have built this week to separate the hard stuff from the everyday.

As you know, Malachi headed to the operating room this week for a bronchoscopy to look at his airway and lungs. I will do a quick summary for you of the findings…I try to include all the medical terminology and jargon in case other parents researching these terms need some insight for their own child.

Bad news #1- Prior to the procedure the pulmonologist suspected he was aspirating, and it was confirmed that he is silently aspirating his secretions. Aspirating essentially means that they are going down the wrong tube and finding their way into his lungs. Lungs are often not able to process the foreign bodies and infections can occur. Malachi’s cultures did in fact show that he has a current lung infection that is going to be treated with 14 days on amoxicillin. We are thinking that this may be one of the causes for the frequent random fevers he has been having.

This also revealed a new diagnosis through his CT scan called bronchiectasis, which is scarring of the lungs due to frequent aspiration. Malachi’s scarring is on the back side of his lungs, which makes sense due to the way he is often positioned in a slight recline.

Bad news #2- Malachi has a floppy trachea (called tracheomalacia). This may sound familiar as Levi also had this condition, but his has improved dramatically. Unfortunately Malachi’s is worsening as the years go by. When he breathes out he is having a 50% collapse in his upper airway.

Bad news #3- Malachi has bronchomalacia, so same concept but in his lungs. When he is breathing out the cartilage is flopping over the bronchi into the lungs by about 75%-80%, trapping anything that is finding its way into the lungs from being able to get out. So you and I can have a ”productive cough” and bring stuff out of our lungs when we are sick or congested. Malachi doesn’t have the ability to do that well. And then if he was successful at getting it out of the lungs it would struggle to get through the windpipe due to bad news #2.

The surgeon was able to clean his lungs while he was in there and test the samples, and Malachi’s breathing was EXCELLENT for the few days after the procedure. He even had an oxygen saturation of 100 post op at one point, which we haven’t seen for years.

So in summary, we know that foreign substances are getting into Malachi’s lungs and the chances of him getting them out are slim. So what do we do?

We treat on the assumption that he will have a lifetime full of infections and start preventative measures. Starting this week Malachi is on azithromycin (same meds as a Z pack) every Monday, Wednesday, and Friday for life. This is in addition to the 14 day antibiotic he started for the current infection. He will also be getting a shot that prevents against several strands of pneumonia.

Okay, so let’s go from medical jargon to mommy jargon.

Remember that switch I talked about last week? I superglued it into medical mom mode, trying to completely detach from the emotional side for the day. And I was successful…until I wasn’t haha.

When the time came to send Malachi back with the anesthesia team he was giggling and I was able to do the send off without shedding a tear. I kept my wits about me during the surgeon updates, and didn’t even think about crying through any of the parts that normally get me. I mean, we have done this 44(?) times now and have been through some really hard and really unknown outcome surgeries. A simple exploratory procedure like this one shouldn’t get me unraveled.

After the surgeon updated me I exhaled and sat down in a chair to wait for them to take me to recovery with Malachi. I watched the clock tick away and tick tick tick. Still no Malachi, and no updates. Aside from the surgeon updates no one else had given me updates on Malachi in the three hours since they took him from me and the procedure process from start to finish was estimated to be 1.5 hours (including prep and anesthesia). Typically I get a call when anesthesia and IV attempts are successful, when the surgeon starts and finishes, when Malachi leaves the operating room.

Three hours of silence.

I assumed he was in recovery since I had spoken with the surgeon. But as I processed the silence my imagination started wandering and I started to get a little panicky. After waiting a bit longer I couldn’t stand it any more and pushed the nurse call button. When she entered the room the emotion flood gates broke and I sobbed, trying to explain that I assumed this procedure would be like all the others and I would get updates and be able to join him in recovery as soon as possible.

She explained that due to Covid parents were no longer allowed in the recovery room, and this surprise piece of info made me panic even more. Malachi is not able to communicate verbally but I can read him like a book and figure out what his needs are based on his body language. The idea that he was back there potentially trying to convey something and no one could understand him tore my heart.

And then the mom guilt slipped into the picture. I had promised him he would get to listen to his favorite song the second he woke up. I had told him when he opened his eyes I would be by his side. I was mad at myself for making assumptions that this round would be just like the others.

I was also extremely disappointed in the hospital staff for not keeping me updated. I can’t help but wonder if Malachi was treated differently than other patients due to his differences. I don’t want to believe this is true, but I also fully believe that other parents would have been updated regularly had this been their first OR experience.

Malachi was finally wheeled back into the room and I was able to calm down. I snuggled him and then had to pop that switch right back into medical mom mode so I could get him out of there. Our day was delayed significantly and even though we arrived at our 7am scheduled time (for a 1.5 hour estimated procedure) we didn’t make it home until 4pm.

Malachi ran a high fever due to the lung intrusion but was back to his bubbly self after about 24 hours. The new medications are causing some pretty severe belly issues and creating lots of explosive crying from belly pain. I am also looking into the potential for more liver failure issues due to the new antibiotics being metabolized through the liver.

Little Levi had a very hard time with this procedure. As soon as he heard Malachi had to go to the hospital he burst out crying and physically clung to Malachi. The day before the procedure I heard him whispering to Malachi “Malachi, you should punch the doctor.”

As I put Levi to bed the night before he just sat silently with tears streaming down his face. His empathy for Malachi was so real in that moment and I spent some time snuggling Levi and praying with him for Malachi.

He was overjoyed to finally have Malachi back home. Their love for one another is just so special.

Ugh so much heavy stuff here. Let me take a commercial break and talk about some fun things from the week before we jump back to the hard things.

We spent the majority of our week enjoying the sunshine and getting some fresh air. The boys have been enjoying lots of rides on the little truck and playing with friends. Malachi has not been 100% due to all the medication changes, and it is weeks like this one that I am extra grateful for the ability to give him little bursts of fun but still remain close to home base for our medical needs.

Alright, back to the hard stuff.

It is incredibly rare for my hands to be empty. I typically have Malachi in them, and when he is not being held I am busy chasing Levi. So being in a hospital room for 3 hours with empty hands really messed with me. I struggle with anxiety (I wonder why haha) and have a tendency to self mutilate without realizing it by picking at my fingernails and the skin around them. The night before surgeries I always clip off all fingernails just in case and pack extra chapstick to keep me from biting my lip.

Passing that time is very, very hard to do. I used to think I could read a book or read the Bible but truthfully I am unable to focus well on anything. So I just have to let my thoughts run and pray that the time passes quickly. I spend a lot of time praying, but not in a consistent manner- more like a sporadic way when the anxiety starts to drown me.

It is hard on days like this one to even know what to pray for. I have a t-shirt that reads “Dear Jesus” then lists the whole alphabet and ends with ”Amen” and I truly feel like this is my prayer on surgery days. I don’t even know where to begin.

As I let my mind wander I couldn’t help but process that the rest of Malachi’s life will continue to be full of these procedures, waits, and bad news. Malachi’s body will only continue to decline without a miracle from God.

The amount of potential suffering that lies in wait for my son takes my breath away.

I found myself pouring my heart out to God and praying over Malachi’s death, and begging God that Malachi’s entrance into heaven would not be preceded by suffering. I love Malachi with all of my heart, and I treasure every minute, hour, and day I get to spend with him. But my mind wanders often to the potential ”lasts”.

I know I share this verse often, but this week its words soothe my heart.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16-18

Those initial words, ”Do not lose heart”. I have been evaluating what that process looks and feels like, and I have realized that this is a temptation often in my life, and especially on surgery days. It is allowing discouragement to take my eyes off of God and giving them the opportunity (and excuse) to focus on current reality.

When I keep reading that verse I can’t help but think about Malachi’s frail, scar covered body that continues to fail him over and over again. The medical community has created such amazing technology to preserve life, but it also allows a firsthand look at the ”wasting away” that this verse refers to. As Malachi ages and his medical conditions progress these words pop off the page at me. And it is easy to allow my focus to rest on the doom of those words and stop there. But we have to keep reading.

Yet inwardly we are being renewed day by day.”

So what does that process look like? It means that our bodies are designed to fail us. Malachi’s body will fail, my body will fail, and your body will fail. No one is exempt from this process. The words of this verse remind me that we are daily being renewed, and sustained, by God because He has more work for us to do on earth.

God will continue to renew Malachi day by day because He has more God honoring work for Malachi to accomplish. And when I fix my eyes on the unseen I remember that even the suffering that we may encounter, or our “light and momentary troubles” are being used by God in ways we cannot see.

I don’t know what lies ahead for Malachi. But I do know that regardless of the potential suffering leading up to it, the day that Malachi runs into the arms of Jesus will be the best day of his life. And that hope that I have in Christ keeps me choosing joy in spite of the hard days.

Please pray for our family as we enter new territory. Transitions into new medical routines is always challenging. We will be starting a new style of breathing treatment daily as well as trying to introduce several new medications into his system. That many changes can trigger his seizures and cause a lot of discomfort, as we are already starting to witness. Please pray that his body adjust quickly and that the benefits outweigh the complications.

Much love,

Leah

Crawling

I find myself eager to write the blog tonight, really needing to dump some emotions somewhere. It has been a busy week, full of good things and hard things.

It is sometimes difficult to explain the pendulum of being a special needs mother to others in a concise way. As I thought about our week I visually pictured a toggle switch so I whipped up a visual to help me explain.

First of all, let’s collectively laugh at the ”off” sticker in the middle. All of us moms can agree that we never rest in an off position as momma. In my days I often toggle between these two very different styles of mothering.

When the switch gets flipped to the Medical Mom Mode I become caretaker. It is not that I withhold love and cuddles in this mode, but my focus is more utility making sure needs are met and life is preserved. This mode takes an incredible amount of effort and focus. Medication doses, seizure activity, positioning, oxygen levels…it is a mode that I can’t afford to do half heartedly. Oftentimes the fun gets overshadowed by the necessary, so it becomes a dark place for both Malachi and I to rest in. And a boring mode for Levi. But I also can’t afford to let emotions cloud my thinking, so those get shut off to allow me to focus.

Then there is Typical Mom Mode. I am always keenly aware when I am in this mode, and it is a gift each and every time the switch gets to rest here. In this mode we get to pretend that medical issues don’t exist and just enjoy being a family. I would venture to say that each day has moments of this mode, but spending more than an hour or two in this mode is rare. Medical routines and feeding schedules require the switch to get toggled back over. And truthfully it is in this mode that the exhaustion of medical mom catches up with me, depleting my energy to do much with the boys. Adrenaline crash is such a real thing in our world.

This week I spent a lot of time in Medical Mom Mode. Malachi’s brain is severely damaged and one of the areas that sustained injury is the part that controls temperature regulation. This week has been filled with mysterious high fevers that appear out of nowhere and disappear after an hour or two. Normally I ride out these fevers and they eventually stop, but he is scheduled to go to the operating room on Wednesday for his bronchoscopy so I am a bit more nervous about waiting it out.

On Tuesday evening we got home from soccer practices and I fed Malachi. Within 10 minutes he zoomed from 98.6 degrees to nearly 102. His oxygen saturations dropped from 94 to 84 and his heart rate was around 170. He started visibly shaking, clearly in pain and the only thing I could think of that may have contributed to this sudden change was the fact that Malachi had not had a bowel movement in several days. I started to wonder if we were dealing with impacted stools so I packed a hospital bag and took him down to the Emergency Room at 1am. By the time we got there he was completely back to normal…no temperature, no oxygen issues, normal heart rate. I almost felt foolish being there but we went ahead and verified with x-rays that he was moderately backed up.

They sent us home with a clean out protocol, so the second half of our week kept us home and close to medical supplies and diapers. I will spare you the details from that process haha. Saturday night his random fever came and went and tonight it came back. Something is definitely irritating his system but it doesn’t seem to be a visible illness.

In situations like these it seems the switch gets jammed into medical mom mode and superglued there. Even in my sleep I am listening for seizures (worsen with fevers) and waking up to administer medications and check temperatures. When Malachi is uncomfortable I try to do anything in my power to keep him comfortable, and oftentimes that means holding him for hours and hours at night. I lose track of days and nights and psychologically that starts to mess with me. It has been a mentally and physically exhausting week.

But let’s talk about some fun things for a bit.

Our soccer ministry came to an end yesterday and it was such a fun final day. We set up some backdrops for parents to snap some photos and I snagged a few of the boys during our trial run. I had to bribe them to smile with some chocolate from the concession stand but the results were worth it.

The last six weeks has been such a refreshing thing for me as I had the opportunity to connect with so many amazing kids. We were able to talk to them about Jesus twice a week and teach them soccer. Watching them improve their skills and soak in truths about God energized me so much. I am going to be sensitive to not post group photos without parents permission, but I know this sweet girls momma won’t mind me sharing this one. Such precious souls!

Monday the boys had their annual appointments with the pediatrician. Because we are followed by so many specialists we don’t often have to go to the pediatrician, so most of these annual appointments are me filling her in on what each specialist is happy with and concerned with. She was pleasantly surprised with Levi’s progress in one year and Malachi’s ability to communicate.

Levi had to get a few shots and was not happy. When we got in the car I heard him mumbling to himself in the backseat and I asked him to repeat what he said. In a sulky voice he said ”Me ’bout punched that doctor.” Y’all, I have no idea where that came from. We don’t talk like that, but in his mind he was ready to start swinging.

Levi is so observant and has picked up on so much medical terminology. He often catches me off guard with his random knowledge, like the correct names for the tools the doctor uses. This week he saw me drawing up Malachi’s medicine and said ”Getting Malachi’s keppra?” Malachi takes 6-8 different medications and he can correctly identify 4 of them by name when I hold up the bottle. Ummm what?!? That isn’t something I have taught him so I was shocked when I tested him. Smart boy.

Malachi got a fancy new headrest cover for his wheelchair to complete the Spider-Man theme. He is very proud of it! We found an Etsy shop run by a high school girl and were thrilled to find one that was perfect for Malachi. If you are a special needs mom and want to check her out here is the link: https://www.etsy.com/shop/RockMyRide?ref=simple-shop-header-name&listing_id=1182145080

You can also spot our new family game in the background. Malachi absolutely loves this dart board and gets really into our friendly competition.

Now on to some reflection time. I haven’t had a chance to really script this beforehand so you all get the fresh cut version.

This week Levi said ”Mommy, look at this.” When I looked down he was crawling on the ground like a baby.

And I felt hot tears come to my eyes. I have been a mother for 9 years and it was the first time I witnessed a child of mind crawl like a baby.

Now Levi is four years old and walking, jumping, climbing, and scaring me on a daily basis with his adventure seeking. But here he was crawling, and so proud of himself for his ability to coordinate his body to do that action.

He jumped up, waiting for affirmation and I laughed through my tears and told him how proud I was of him. And then the feelings flooded in. Actually, they are flooding in right now as I type this.

The first wave of emotion is such joy. I flashed back, thinking about that little baby Levi hooked up to oxygen, his feeding tube, and a pulse oximeter 24/7 for the first few years. I remember watching him play on the floor and trying to make a plan for when he would start to crawl. But after months and months of waiting that developmental skill never came.

The second wave of emotion is such mourning over our loss of normal. A sadness that after 9 long years I am celebrating something that most parents get to celebrate a few months into the parenting gig. Our journey has been so, so hard. It has been riddled with disappointment and unmet milestones. And filled with specialists that are very skilled at using those unmet milestones to label, medicate, and reality check us. I actually detest milestones and the grief I allowed them to bring into my life.

The third wave of emotion is shame for even allowing emotion #2 to enter my psyche.

And the fourth wave of emotion is overwhelming thankfulness. I am so thankful for a miracle in Levi’s life. I am thankful that God granted us these seemingly insignificant glimpses of normal.

The truth is that I could choose either of these four emotions and settle into them. I could decide which reaction to stick with, and let it influence the moment. And I could find dozens of you that would justify whichever one of these I chose.

As Christians we are called to be different than the world. We are called to “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

We aren’t called to settle in the dark places our mind will inevitable be drawn to. Even when they are justified.

This week I was sitting on the couch with Levi and I noticed him studying our photo wall. He pointed at the large, stenciled words scattered in between the pictures and asked ”Mommy, what do those words say?”

It was the first time he has noticed the words so I read each one carefully to him…

“Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent…Think on these things.” (Taken from Philippians 4:8)

He intently listened to each word, trying to understand what they meant. I explained that we are called to focus on the good things that God does in our life instead of the bad. I asked him if he could think of a good thing God has done for us and he said ”Malachi amazing!”

Yes he is, buddy. Yes he is. Cue the ugly cry.

We kept the list going and talked about the good, and watching him reflect was such a reminder to me that wherever that toggle switch lands, whether I am in medical momma mode or typical momma mode, I am called to focus on the good, recognizing the gifts God places in those moments for me.

I don’t know what labels you could place on your toggle switch, but I want to challenge you to look for the good even when it gets flipped to the challenging position.

Please say a prayer for Malachi this week as we attempt a procedure on Wednesday. Pray that it is a fruitful endeavor and we get some answers onto whether or not he is aspirating.

Much love,

Leah