We have snow! Getting outside as a family and playing in the snow is always a challenge, and Malachi’s way too aware for one of us to take just Levi outside to play. This is our first real snow with the ”little truck” and getting to drive around the yard and play in the snow was just so special.
Lately we have been staying tucked in and hiding from germs. These past few months have been so difficult on our family and the new covid variant is hitting our area hard. So hard, in fact, that Jake’s school system closed due to illness.
We did have one appointment early this week to see the dentist about Malachi’s molar. He recently had a crown break off and cut up his mouth pretty badly before it completely came off. While we were there we also had them examine Levi’s teeth, which is always an adventure. I couldn’t get him to pose for a picture- he was halfway out the door ready to leave that place.
Malachi’s sleeping patterns lately have been such a challenge to navigate around. Right now he is finally committing to sleep between 3-4am. I can get him to fall asleep before then but inevitably every single night he wakes up over and over again with seizures until finally giving into sleep. The psychological aspect from that routine is so so hard for me to deal with and I can imagine how hard it must be on his little body and brain.
Add Levi into the mix and things get even more complicated. If I put him to bed at a typical bedtime for kids his age he will be up by 8am, leaving me with very little sleep. So I am keeping him up until after midnight so all three of us can get a little rest.
Without there being a recognizable ”end” to our day to count on it is very easy for each day to merge into the next one. And each day is so similar to the last, with the medication schedule and feeding schedules being priorities that we work the rest of the day around. We are held prisoner often by the demands our life requires to keep the kids alive. I recognize that is a very harsh way to word it, but the inability to have flexibility within our day has so much potential to sprout bitterness and discontentment in my heart.
But I recognize there is going to be a day that I will long desperately to go back to these routines and tasks. So while they are psychologically challenging they are refining me in such a big way and reminding me of the need to be present as much as possible in the season of life that I am currently planted in.
Sometimes we have to create the contentment.
We have to reshape our thinking and change the narrative that naturally flows from our thoughts. This world has trained us to be victims, constantly pointing out the ways it has wronged us or let us down.
When I choose to view dark moments as God “planting me” somewhere I cling to the knowledge that I will only be in darkness until I grow enough to sprout through it.
That thrill of hope is what fuels me. When you look through the Bible you find that most of the characters spent years planted in darkness. In most cases it wasn’t a punishment, but rather a season of darkness they had to experience to create growth. And each time they emerged from those dark places their impact for the Lord was even greater. They never clung to their victim mentality, but rather owned the new creation God was continuing to sculpt them to be.
I am choosing to believe that this hard season we are is teaching us lessons we otherwise would never get the privilege to learn.
I usually try to include a Bible verse with each blog entry, but tonight I am going to switch it up and end with a C.S. Lewis quote that speaks to my heart.
“I suggest to you that it is becuase God loves us that He gives us the gift of suffering. Pain is God’s megaphone to rouse a deaf world. You see, we are like blocks of stone out of which the Sculptor carves the forms of men. The blows of His chisel, which hurt us so much are what make us perfect.” -C.S. Lewis
After a two week long on again and off again relationship with supplemental oxygen, Malachi is finally back to zero breathing supports, hallelujah! We weaned him off early in the week only to have to put him back on for a few days. We kept him on the pulse oximeter 24/7 for most of the week but now that he is stable I am back to spot checking him.
I called the hospital and we have moved his pulmonology appointment up by a few months to make sure we have the right supports on board if this becomes a consistent thing for Malachi. All of the machines we are using are actually Levi’s so getting some extra things on board for Malachi is a priority. Especially a cough assist machine to help break up the junk in his lungs when he gets sick.
We headed to the hospital this week for a routine visit with the epileptologist which required a blood draw. I asked him if he could add a CBC to the lab orders to check his white blood cell count and other levels to make sure we weren’t missing something obvious that was causing the oxygen dips, and all of those came back clear. Still a mystery, but I am glad he is back to his normal.
Little Levi seems to have leveled out on the full dose of the seizure medication and is back to his wild self. Along with seizure control, we are noticing some other really great changes! He is able to focus so much better and his vocabulary and ability to speak clearly has changed. His stuttering has also stopped. This is his pure mischief face.
He is going to have to also start routine blood draws so we used some Christmas money for the boys to purchase this “Get Well Center” for imaginative play.
When Malachi had his blood drawn I asked the phlebotomist for some of the non-violent pieces they use for blood draws, like the rubber strip they tie around your upper arm when looking for a vein. We have been doing pretend blood draws in the new pretend doctor office so much that Levi can now complete the whole process on Malachi. I am really hoping this will help prepare him a bit for lab work. I don’t like getting blood drawn either, so I can’t imagine how the mind of a four year old will feel. Poor buddy.
Tomorrow we will head to the dentist which is a pretty major ordeal. Malachi typically gets panicky and with the increased secretions it brings on he ends up having a lot of seizures from a visit. Levi is new to the dentist scene and his PTSD is through the roof. But maybe he will surprise me! I have bribed him with a kids water from Chick Fil A and usually that does the trick.
The puppy dogs turn 1 tomorrow so Jake’s sister brought over her pup from the same litter and we threw a dog birthday party, complete with personalized cake and ice cream. The kids all really enjoyed the excuse for a party and the dogs enjoyed their small slices of cake.
A few months ago God placed it on my heart to start a soccer ministry at our church for the children in our community. I have had people ask me before ”How do you know when God places something on your heart?” and I have been trying to process that answer. How do I put that feeling into words? I don’t know, but I will make an attempt!
Sometimes God places something on my mind and gives me a sense of urgency that it needs to get done. Typically my gut reaction is ”there is no way I could/would want to ever do that!?!” One of the biggest indicators the push is from the Lord is that it always requires a tremendous amount of sacrifice whether it be time, money, or comfort and it isn’t something that I am very eager to do. So my next step is usually denial and procrastination. I am really good at that step.
But that sense of urgency doesn’t go away. And in my quiet time with God He continues to bring the topic to my heart. The scriptures I am led to read affirm that gentle push from God.
I have learned over the last decade that God isn’t looking for perfection, He is simply looking for obedience. Taking that initial step towards the hard things He is calling us to brings a wave of peace into my heart, a peace that is undeniably from the Lord. And usually that first step is the only hard work in the journey. When you are walking in obedience God flings the doors in front of you wide open.
I am not sure who that last paragraph is for, but it is most definitely for someone that is reading this.
The night that Malachi was born I remember laying in the bed at our house, doubled over in pain. I had called the doctor and had been instructed to come in first thing the next morning and I was desperately trying to ignore the feeling in my gut that something was very wrong. I will never forget what happened next. My feet were planted very firmly on the floor and I found myself standing…something I had no intention or strength to do. As my feet firmly planted on the floor I heard the voice of God loudly command me ”Get up and go.” I had heard from the Lord at different points in my life prior to that, but this time was commanding and urgent.
I walked into the kitchen and told Jake “We need to go to the hospital right now.” And out the door we went without another word of hesitation. If you don’t know, later that evening we were transported via ambulance to a hospital with a high level NICU. Within 20 minutes of arriving Malachi’s heart stopped inside me and I was raced to the operating room for an emergency c-section to get his lifeless body out to start CPR. After 15 minutes his heart began to beat.
I will never forget the ”Get up and go.”
This morning our pastor taught from the book of Acts. As I scanned the chapter for context I noticed that phrase over and over again on just the two pages I was looking at. “Get up and go.” I had never noticed this before and it really sparked my curiosity. I spent time today leafing through the book of Acts and noting all of the many times that was the only command that God spoke to so many people….and without wavering they obeyed. Bot knowing the details, not knowing the outcome, but choosing to walk in faith.
And God rewarded their obedience with more opportunities to get up and go. More chances to do His work here on earth. More opportunities to get a firsthand look at His ability to do exceedingly more than we can imagine.
What a beautiful relationship we can have with God if we simply get up and go when He calls us to. So often we allow fear, excuses (yes, even reasonable and justifiable ones), and our lack of self confidence to stay complacent. But oh the growth we can experience in our walk with God when we get up and go. He can lead you into some pretty amazing situations and opportunities.
So if you needed someone to tell you this, here it is: Get up and go. Do that thing that God has been drawing you to for weeks, months, years. Even if it isn’t the right time. It isn’t the right phase of life. It isn’t the safest financial investment. If God is calling you to it, please please please do yourself a faith favor and obey. Take that step of faith and watch God do His thing.
Please join me in prayer as we embark on this new calling. When God calls us to these specific tasks He always seems to work out the details beautifully but we also find ourselves under a stronger attack from the devil. Please pray for our endurance and strength and please pray for a season of health for our family so we can continue to pursue the work God calls us to.
When I last posted Malachi was struggling to maintain his oxygen levels without support but steadily seeming to improve. By mid week his progress stalled so I made an appointment with the pediatrician to have them listen to his lungs and make sure pneumonia wasn’t brewing.
I loaded up the portable oxygen concentrator and started the drive but as we drove he kept wiggling his head enough to knock the cannula out of his nose. As we drove down the highway I watched his saturation numbers drop to the low 80s and knew we would have to bypass the pediatrician and head to the Emergency Room.
Two ER visits in a week and a half with two different children…my heart was sinking pulling into that parking garage again. We were taken back quickly and sent for x-rays and did a viral panel. And everything came back perfectly clear. Confusingly clear. The ER doctor was perplexed and said they would like to admit us since he was requiring oxygen support but they were out of rooms. I explained that we had a concentrator at the house and he was comfortable with letting us go home with the promise of returning if we had to turn his oxygen up above 2 liters.
Malachi has not grown any worse, but hasn’t really improved much either. For the last few days I have been able to wean him off of oxygen by dinnertime only to have him require it again as he sleeps and an increase each morning. He is down to just .5 liters of support, which is as low as the concentrator goes but after nearly 10 days of this I still don’t quite understand why he isn’t able to come off of it completely.
Needless to say, each day this week has been spent watching him closely and not leaving the house. Not too many fun things to report. Truthfully, it was a good week for time at the house as Levi increased to his full dose of seizure medication. He handled the increase really well the first two days but the third day it hit him hard and he has been taking 2-3 hour naps every day since. History shows us it takes a child about two weeks to level out on a new seizure medication so hopefully after this week we get through that adjustment.
We had lots of family game nights and cooked a lot of old recipes. We steam cleaned carpets and organized junk drawers. We did everything we could to help the pass time and distract ourselves from worrying about Malachi. I took this video during a wild game of Mouse Trap to show you how Malachi communicates his choices to us when we offer a list.
As we enter a new year my fleshly desire is to set goals. But I am not fully convinced that goals in general are always a God honoring thing. I don’t think that when they stand alone they are an inherently bad thing. But I do think they have the potential to convince us that our successes in life are a byproduct of us.
I can point you to plenty of verses that mention goals but each of them are talking about one single goal, and that is eternity with Christ.
In my own life, setting goals has proven to lead to so many sinful moments with me. When unexpected circumstances arise (and they always do) that keep my goals from being met it brews anger, sadness, and frustration inside of me that often bleeds into my interaction with others.
So much of my life is walking step by step without really focusing on anything other than the hem of the garment of Christ as He leads me. When my eyes try to look past Him to see the blurry vision of our next destination on the path I lose my ability to look for the God moments in the ”now”. I get too busy envisioning reaching that destination and miss the blessing of the journey.
For some crazy reason this week I felt led to read the book of Habakkuk. Now before you start thinking I am a super Christian you need to know that it is only three chapters long and can easily be read in one sitting. If you have never been able to read a full chapter of the Bible today is the day!
I could spend a long time sharing the many things that stuck out to me as I read, but I want to point you to the final words in the book.
”Even if the fig does not blossom, and there is no fruit on the vines, if the yield of the olive fails, and the fields produce no food, even if the flock disappears from the fold, and there are no cattle in the stalls, yet I will triumph in the Lord, I will rejoice in the God of my salvation. The Lord God is my strength, and He has made my feet like deer’s feet, and has me walk on my high places.” Habakkuk 3:17-19
I read those words at 3am on New Year’s Day as I watched the flashing numbers on the pulse oximeter machine beside me. And as I read them I felt a warmth in my soul and a fire in my heart.
God isn’t looking for us to meet the physical, mental, emotional, or even spiritual goals we set for ourselves. He is looking for relationship. He is looking for a relationship that is done from love and not from obligation, as we often do with goals we set.
It is so common in our world to focus on all the good things life can offer us. But tonight I want to remind you that there are so many hard things in this life. When I read these words in the verse I can so easily see what they represent in my life, and I challenge you to do the same with your story…
The figs don’t blossom, no fruit on the vines, the yield of olives fail, the fields don’t produce food, flocks disappear, cattle are not in the stalls…
I can pick out so many things from the last 365 that I can fit into these statements. And the devil would want us to stop reading there and dwell on the ugly parts of our lives. He would tell us we need to “overcome” these hard times. But I am not convinced that those challenging times are such a bad thing as they produce so much good in our faith.
“Yet I will triumph in the Lord, I will rejoice in the God of my salvation. The Lord God is my strength, and He has made my feet like deer’s feet, and has me walk on my high places.”
My prayer for 2022 is that God continues to have me walk on high places, using His hand to steady me.
And I really like those words: Yet I will triumph in the Lord. What a beautiful proclamation for this coming year.
Please continue to pray over both of our boys, as they each struggle with such big battles. Pray that our family can experience some rest in the coming weeks, as it feels like we have been under continual attack.
This week little Levi and I ventured to the hospital to meet with his neurologist. He is always anxious beyond what words can describe when we go to any doctor appointment so I told him I needed to go to talk to the doctor about Malachi and asked if he would come along. I told him we would make it a date and have Chick-fil-a after and that sealed the deal.
The neurologist watched the video we had taken of Levi’s seizure and said with 100% confidence that it was one. He said two or more seizures in a lifetime warrants a diagnosis of epilepsy so two in one day was without a doubt an immediate diagnosis. Levi has complex partial epilepsy and started a medication on Wednesday to help control these. Oddly enough, with Malachi’s four seizure types this is a new form of epilepsy for us and a new medication.
A very well earned kids water. His favorite!
For the first week he is at a lower dose and will double it on Wednesday. It has made him very emotional and he swings from one end of the spectrum to the next very quickly. He is having a hard time regulating his emotions and his anger had been explosive. This medication can also potentially affect his sodium levels so he will start doing regular labs to check those levels. I am dreading this for him.
The neurologist didn’t seem to think that the stuttering that also started the same day as the seizures is related but I have such a hard time accepting this. The seizures are generating from the left side of his brain which is also the portion that controls language. The doc also suggested an updated EEG and sedated MRI for informational reasons but since we have done those recently I politely refused; the results would not change the treatment and we have already seen a snapshot of what is going on inside of his brain. We have been aware of Levi’s 5 damaged spots inside his brain for several years now and this is just a ”symptom” of that damage.
To be honest, I handled the diagnosis part decently. I had more of a breakdown when I witnessed the seizures since I felt us going down a path I had been before. There is this sinking feeling in your gut when you witness a first seizure…like butterflies that make you want to vomit. I remember the exact spot I was in when Malachi had his first seizure, like my brain took a snap shot of that moment, and that gut feeling comes back when I picture it. The same emotions came over me when I watched Levi’s first two seizures last weekend.
There is always comfort in having a plan. It is the ”let’s wait and see” situations that bring me the most turmoil, so while I am so incredibly disappointed that Levi’s brain is struggling I am thankful we have a plan in place. We have been watching him 24/7 to make sure we don’t miss another episode as he could very easily hurt himself during one by accident. We take turns with each boy, as Malachi’s seizures have been active at night lately too. I am so glad Jake has a break from school as this would have been a very hard thing for me to get through alone.
Levi has been doing a lot of imaginative play lately and started doing magic tricks with his magician costume. He is as cute as a button and I took a video to share with you:
We had been holding our breath all week as we inched closer to Christmas Day. Inevitably something always happens on the major holidays. We made it to the night of Christmas Eve and planned to head to a friend’s house for a Jesus birthday party. Before we left I asked Malachi if he was excited about going and he signed ”no”. This is so odd for him so I took his temperature and it was a perfect 98.6 so we loaded up and headed to the party, hoping he would perk up when we got there.
After a few minutes he had a pretty big seizure that lasted much longer than normal. His back heated up within minutes of the seizure and I took him back home where his temp registered at 101.5. The fever broke by the next morning which made me wonder if we were dealing with a brain malfunction rather than a sickness. But Christmas morning his oxygen saturations started dipping and we spent most of the day trying everything we could to avoid going to the hospital on Christmas.
Last night he declined pretty rapidly so I ended up putting him on two liters of oxygen and staying up most of the night watching his saturations. By morning he was slipping into hypothermic ranges (96 degree body temp) which means his brain was going haywire and definitely fighting something. Jake also started complaining of some symptoms so we are assuming it is viral.
We are at a point where we are evaluating each hour whether or not I need to take him in. I don’t think I am emotionally prepared for another ER trip quite yet, let alone another inpatient admission so join us in praying against more pneumonia. I just changed out his shirt, tape, and cannula and he gave me a smirk at the idea of putting on his new Thor shirt.
We aren’t huge ”Christmas” people…I know that sounds so bizarre. I think the premise of celebrating the birth of Christ is so pure, but our world pollutes it with an underlying edge toward selfishness and materialism. When I step back and try to look at the holiday through the eyes of God I have a hard time finding the God glory among all the self glorification. I am on a journey with this one….still not firm on any stance, but on a journey with it and what I want the holiday to look like for my family and trying to be guided by the Holy Spirit.
But we do the four gifts: something you want, something you need, something you wear, and something you read. Levi also had a new bike with pedals hidden in the bedroom.
We spend time each holiday season packing up our excess toys and getting them into the hands of those that need them. It is an easy avenue for me to have conversations with the boys about looking for ways to be Jesus to others, and the older they get the more fun this “secret project” is. This year Levi opened up the cutest little bike and when he couldn’t easily master it he told me ”Give it to a kid that needs it.” And walked off. I am proud he is starting to think of others- although I think his generosity in this case was fueled by frustration. He did thoroughly enjoy the water bottle that came with it and says it is his favorite gift. Malachi’s favorite gift was a switch adapted train that spits out dominoes in a line and some superhero muscle shirts.
On a sidenote, Malachi officially got his ”Spiderman theme” this week. Jake and I crafted some wheel covers and added some superhero hands and a cape. He is smitten.
We received the bill for this chair this week and it was nearly $17,000 pre-insurance! Unbelievable!!! Anything marked ”special needs” automatically gets marked up. When we looked up Spiderman wheel covers they were $140 per set. We were able to make these and strap them on for about $20. Such a broken system.
Let me throw an old photo your way that made me smile this week. This is chubby faced Malachi when he was the same age as Levi.
I have had a few people ask about our family service project. We did letters and gift cards for some PICU/NICU moms this year and the boys each helped me sign the cards. Levi asked a lot of questions and I brought up photos of him in the hospital his first Christmas. We prayed over the cards as a family, that God would get them into the hands of the moms that needed the hug from a family that has been there and done that. My heart truly hurts for all of the moms in the hospital on Christmas- it is such an isolating place to be.
So let’s talk honestly about Christmas. I was on the verge of tears most of the day but couldn’t seem to pinpoint why. I so desperately wanted a normal Christmas Day for the boys, but unfortunately it was a bit chaotic. Malachi was feeling too puny to really enjoy opening his gifts and Levi’s emotions were way out of sorts. Yes, we were home and not in a hospital but oh how hard it was to process the disappointment of a drama free day.
Late that night I was looking through the few photos I snapped throughout the day, disappointed that my Christmas didn’t look like everyone else’s. The comparison game goes into overtime big time, doesn’t it? I fight the comparison issue on a daily basis but on holidays our loss of normal seems to be rubbed in our face (coming from the perspective of a grieving momma).
As I flipped through the photos I found one that I didn’t take. And it stopped my pity party immediately as I studied it.
This was the day through the perspective of a four year old and his sweet little toddler foot. So much contentment in this photo. Watching a movie all lounged back with his big brother, waiting patiently to open those presents under the tree. But the biggest thing that caught my eye was the reminder on the wall ”Consider it all joy”. It was the words I needed to read to remind me that we have been given the unique blessing of trial after trial, and seeing the hand of God over and over and over again in the lives of our boys.
“Consider it all joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance . Let perseverance finish its work so that you may be mature and complete, not lacking anything.” James 1:2-4
What a gift this journey has been. It has shifted my perspective in ways that a normal life couldn’t. It has made me fall on my face in front of my God, relying completely on Him to sustain us. God has gifted us with perseverance through our many trials.
One of my Facebook memories popped up this week and it was a blog entry from Levi’s first Christmas in 2017. That entry can be found here:
We were just a month into his journey and we had just attempted an experimental surgery to fix his airway- one we would soon find out was a failure. But as I read the longings of my momma heart I can’t help but feel them today as well as we enter into a new year. And proclaim them over our family.
“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”
I pray that when people look into our lives they can see that we live out ”consider it all joy“. That we can find true happiness, even in the ugly parts of life. I pray that people will be able to see Jesus in our family and in the testimony of our children. I pray that the many blessings we have, even the obscure and hard to find ones, will be seen by many and point them towards our God.
May God reveal Himself to each of us as we enter into a new year, and may we have hearts that are soft enough to be molded by Him- even in the trials.
I am happy to report that after our required quarantine for Malachi he tested negative for Covid. His seizures continued to be aggressive throughout the week and he shifted his bedtime to 4am but we are slowly lowering the number for both of those things.
When Malachi and I had to make a late night run to the Emergency Room on Thanksgiving Day I packed my hospital bag so I would be prepared to stay for a few days if needed. After our one night stay I hadn’t made much of a dent in it and decided to set it in the corner in case it was needed again. Every time I walked past the bag I felt a mix of emotions; there is a sense of security knowing it has all the things I need in case of an emergency but also serves as a reminder that I have to live in a state of ”what if”.
It has been over two weeks but each time I head to unpack it my spirit has felt so unsettled about doing so. Jake is off for Christmas break and I decided that this was the week I would unpack the bag. Living with the lingering fear of the unknown is not a healthy place to settle in.
Saturday afternoon rolled around and Levi woke up abruptly from a nap. He looked up into the air and aimlessly tracked something we were unable to see in an odd trance like state. His arms reached out to the side as if he was reaching for unseen things in a very unnatural way. My stomach dropped as I watched his weird movements and then watched his legs give out from underneath him. I dialed 911 but before I hit the call button I decided to try to get him to snap out of the trance and after one minute he started to respond to us.
For the next several hours he complained about how tired he was and couldn’t seem to keep his eyes open. We went to a public place with mild noise and he started crying saying ”Too loud momma, me go home.” When we got home he threw up his bolus feed right after we sent it in but then started to perk up a bit. Jake and I recounted the event that we witnessed and decided maybe he was sleepwalking and that we would watch him closely, but as much as I wanted to believe that was what we were dealing with my gut told me something else was happening.
Later that evening Jake put Levi to bed and thirty minutes later Levi sat up and started the same strange movements and trance-like state. He also started smacking his lips and doing a few other motions that are very common with seizure activity. I took a video to share with doctors and grabbed that backpack to head toward the ER. This second event also lasted longer than a minute and he immediately fell asleep after.
Full transparency here…I did not handle this well. Having two medically complex children is so so challenging. But knowing that they both are dealing with seizures, especially when they sleep, hit me like a punch to the gut.
The nurses and doctors at the Emergency Room who witnessed the video felt sure that Levi was having seizure activity. Their typical plan for treatment in the Emergency Room for seizures is to do a sedated MRI and an EEG and hope it can catch another seizure while he is there. The entire night was a nightmare as we dealt with Levi’s medical PTSD in full force from just being in the ER. They put us in a shared room and the nurses and doctors continues to stream in and out of our room to see the other patient, each time setting Levi into a panic scream thinking they were coming in for him.
It was nearing 6am on Sunday morning and we still were sitting in the ER with no progress toward a solution. They suggested we wait until the morning shift could come and get the tests rolling but we opted to leave and follow up with Levi’s neurologist on Monday. I did ask them to draw some labs to rule out any blood sugar issues or any imbalance that may have caused it but all labs came back clear.
In an odd connection, Levi also started stuttering the same day of the seizures. I am not sure if this is related at all, but I can’t help but think there is a connection.
I think one of the hardest parts for me in emergencies is the drive to the hospital. When I am in the hospital or at home dealing with an emergency I am distracted from my emotions or from dwelling on the situation. But in the car I can’t help but process, and that is always when the emotions come.
I flashed back to that same drive, in the back of an ambulance pregnant with Malachi and feeling every bump in the road and praying that the baby inside of me would live. I flashed back to the hundreds of time we have driven that exact same path to the hospital for surgeries, appointments, emergencies…and I let the emotions pour out of me.
When we got home Levi and I crashed but I still couldn’t fully rest, worried that he would have another episode. The boys were in the church play early Sunday morning and as much anticipation we have had towards that I knew we needed to get up and create some normalcy. Jake and I agreed to shut off the emotions from the night before and try to have a normal morning.
The boys did so great up on stage, Levi as Joesph and Malachi as a sheep. I will post pictures with next week’s blog for you to see!
Prior to our chaos over the weekend we had a pretty decent week. Malachi’s sweet teacher brought some presets over to the boys, and the gesture more than the gifts themselves made their day.
Levi had picture day for his basketball team and the results were absolutely perfect.
We did lots of fun things this week and had lots of fun Christmas parties with friends, but my brain isn’t able to focus enough right now to share them with you. I will have to save those for next week’s post.
I don’t have much energy right now for a typical full fledged devotional thought, but I do want to share something with you.
In the middle of the week God very directly placed a verse on my heart as I read through Jeremiah. At the time I smiled reading it, not realizing my soul would soon be parched and require its words for sustenance.
”But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”
The heat continues to come for our family, and my prayer is that our leaves can remain green…not by any of our own ability but simply by allowing the Lord to sustain us and continue growth for His kingdom through our obedience.
Even in years, seasons, hours of drought we can bear fruit.
Even in our darkest moments God can cause unbelievable fruit to grow.
Please pray for our family, and especially for Levi. I will be following up this week with neurology and trying to find some solutions so prayers for wisdom is so necessary right now. And pray that we can detach this event from Christmas, with no more seizures. Holidays are already so, so hard for us. We need some respite this go around.
Much love, and sorry for the late post. My heart and mind tried to write one last night but continued to fall short from being able to focus.
Let’s play the high/low game to summarize our week!
High- Malachi finally got his new wheelchair! New equipment is a big deal for special needs families because it signifies VICTORY with the insurance brick wall. We started this process in early July and his shiny blue wheelchair made it to the house on Wednesday. Wheelchairs are designed to last 4-5 years per insurance. His green one lasted 5 years and it was nice to get something updated, fresh, and clean.
To be completely honest, new equipment brews strange emotional turmoil within me. Malachi was very excited about his new chair and we talked about all the fun ways we could dress the chair up and make it amazing. He was very opinionated that it was to be a Spiderman chair, and was mildly intrigued with maybe making it a Superman chair every now and then. But he also indicated it was most definitely never to be a Captain America chair…not quite sure what all that hate is about.
The mom cheerleader in me talks to him about all the amazing features on the chair, and how big he looks in it. I brag about how everyone won’t recognize him in this new, amazing chair because it is such a big boy chair. I also rally Levi up to help share the excitement, letting him push Malachi around super fast in the house like a superhero.
But stuffed deep down within me is so much grieving over the new chair. It signifies a lack of our miracle. It represents growth, but that growth represents more complicated medical issues as we near puberty. It serves as a reminder that the bigger Malachi gets the harder care will be for him.
We are so thankful for medical devices like wheelchairs, hospitals, doctors, and science. But I am learning a very real lesson that I can be thankful for something but still not really love it.
Malachi really wanted to show his new wheelchair to his friends at school, which leads us to our low for the week…
Low- Malachi tries to go to school every Thursday and Friday for 2-3 hours. This is where he gets his therapies and his social interaction. He hasn’t been able to attend very consistently this year due to all of the medical issues we have been dealing with.
He spent two hours on Thursday at school and on Friday morning someone that deals directly with Malachi in the classroom tested positive for Covid. As you know, Malachi has had it twice, the second time being much harder to recover from than the first. His last wave of Covid was in late August so we are just out of the three month projected immunity, so we aren’t sure that his immune system will kick in as it should.
As I type this on Sunday evening Malachi is symptom free but his seizures have been very out of control. We aren’t sure if this is a reaction to him trying to fight off Covid or something unrelated, but they are so strong they are causing him to cry in fear when they are over. Some have been lasting over 3 minutes and he is having over a dozen a day.
So far he has tested negative but it really is too early to rely on those home testing kits. So we have been quarantining him this weekend as we watch and wait.
When we are making decisions for Malachi we focus on giving him the best quality of life possible, even when that has potential to reduce his quantity of life. That sounds harsher than it should, so let me explain a bit.
I could wrap Malachi up in a bubble and keep him home and away from the public. That would likely extend his life a bit as I protect him from potential illness. But that wouldn’t be fair to Malachi. He is such a social boy and loves to interact with others. He loves outings, and he loves spending time with friends. Keeping him in a bubble would increase his quantity of life but very negatively impact his quality of life.
However, Jake and I are always struggling to find the healthy balance between both. We have been trying to turn a blind eye to potential sickness school can bring, but I think we are at a point where we need to hit the pause button for a bit and let his body recover. We will have to find ways to fulfill his social needs (and therapies) in a more controlled environment.
Let’s head towards Levi’s highs and lows from the week!
High- Levi has made some huge progress this week with his g-tube feedings. Ever since his g-tube popped a few weeks ago he has had very irrational fears with his mickey button (the circle part of his gtube that you see on his stomach). He keeps telling me he wants it out, which is very possible for Levi in the future but he isn’t able to take all of his calories by mouth at this point. We are getting there, but still have some work to do. He asks me to check his tummy tube at least 4 times an hour, even asking in his sleep. It has become a slight obsession.
Levi eats and drinks throughout the day as much as he can and we supplement with formula through his g-tube 3-4 times throughout the day and all throughout the night. For these sessions we hook up a bag of milk we keep in a backpack and a pump sends it in over 15 minutes.
There is another way to do g-tube feedings called gravity bolus. This is what we do with Malachi and it is so much faster than a feeding pump. The concept is easy to grasp- you attach an extension (straw) and large syringe to the gtube and simply pour the milk in and let gravity take it into the belly.
We have tried gravity bolus feeds with Levi before and he has screamed and cried saying that it hurts. I don’t think it hurts him but I think he just doesn’t know how to explain that it is uncomfortable.
But this week Levi asked specifically that I feed him like I feed Malachi. This is HUGE! So we treaded very lightly and did small bolus feeds for the first few tries. The biggest setback would be his belly not handling the large amount all at once and him vomiting, which he did a few times this week but he is slowly tolerating more each day.
We are officially committed to daytime gravity bolus feeds for Levi and using the pump at night only. The next step will be going to nighttime only, and then naturally we will trend toward eliminating that. If we can go several months without him needing to use the tube he could have it officially taken out forever!
I have such anxiety when I think about that, as the tube is still needed post op for Levi and when he is sick. But I would love a tube free life for him so I will try to put that anxiety in God’s hands.
And when I try to think of a Levi low for the week I can only think of two things…
Low #1- potty training. He is doing great with it, only having accidents when we try to leave the house for extended periods of time. But the amount of urine I am cleaning up around the toilet on a daily basis is baffling. Not really a ”low”, more of a holy moley moment wondering if this is what the next several of years hold. Jesus take the wheel.
Low #2- Levi is growing up. And his level of independence is increasing. This week as we walked into basketball practice I tried to snap a photo because he looked so cute in his tall ”basketball” socks he found in Malachi’s sock drawer and insisted on wearing. He was not amused and said ”Mommy, please go upstairs.” (the area where the parents have to watch from). Ouch.
But truthfully watching him grow has been so special and unique. The ease at which he passes through different developmental stages has been fascinating.
We got to do some more family trail riding in the backyard oh the joy it brings them (and us when we hear their giggles). It is such a big adventure for them, and being able to do that right outside the back door is a blessing. We always worry about regret on big purchases like these, but no regrets on this one!
This week I am in a good head space. I think the rest that this weekend brought with us as we quarantined has something to do with my clarity of mind. But I also have to attribute it to making a concerted effort this week to read AND ABSORB the Bible each day.
I have been so spiritually thirsty, but when I get the free moments to open the Word of God the stillness of the moment reminds me of my exhaustion and even though I am reading the words my mind cannot seem to absorb and process them. When I am done reading the words I feel so unsatisfied, which is not a healthy way to truly connect with God.
So this week I tried something new and I read a chapter a night, taking a screenshot each time I read a verse that pricked my heart. Then throughout the next day I pulled up those verses to read again and again, allowing myself to absorb them instead of going through the motion of just reading them.
And this is the one that really took root in my heart throughout the week:
Colossians 3:2 ”Set your mind on the things above, not on the things that are on earth.”
The word ”set” has been a reminder to me that our minds are naturally wired to focus on earthly things…our possessions, our problems, our worries. Focusing our minds on the things above has to be a concerted effort. But when we successfully ”set” our minds on the things above we seem to sail through those earthly moments that used to consume our minds.
This verse also reminded me that I need to start teaching this habit to my own children, helping them process what ”the things above” look like. Teaching my boys about God is something that is so important to me, knowing that some hard moments and conversations will be in our future.
While I know I can never fully prepare any of us for what is to come here on earth, I recognize the importance of building that framework of faith to point to when those hard times come. How can I expect Levi to be able to set his mind on the things above during the hard moments if I don’t start teaching him about those things now.
And those heaven talks with Malachi have become the favorite part of our day as we think about all the wonderful things it will hold for him. What a glorious thought it is thinking about all of the ”firsts” he will get to experience there.
Such a bittersweet thing to talk about and process.
Ugh the emotional roller coaster the special needs world puts you on. Sometimes I yell that I want off this ride, but in my heart I know that strapped into that coaster seat is exactly where I am meant to be.
Please join me in praying against more Covid in the Carroll house. And pray that Malachi’s seizures slow down and that we can identify the source of discomfort in his little body.
We spent most of our week tucked into the house, trying to help Malachi get back to his baseline (somewhat successful) and trying to keep Levi from going stir crazy (less successful). We took lots of rides in the new “little truck”, as Levi calls it, and spent some time on the playground. I am so thankful for the many things we have at our home to make life here an adventure, especially on the harder days when we aren’t able to get out due to health reasons. In the past our family has gone into lock down mode for flu season to prevent the boys from getting terribly sick. The freedom to play here without fear of germs is an incredible blessing.
But alas the germs still manage to find us every now and then. Jake came down with a cold the day Malachi came home from the hospital last week and despite our attempts Levi ended up showing symptoms mid week. By Thursday he was running a high fever and was very sick.
When his airway swells it cramps the space, which is already small to begin with due to his paralyzed vocal cords. He gags very easily during these times and can’t keep food down. He hasn’t been able to keep any formula down for 3 full days so we are running Pedialyte through his gtube to make sure he stays hydrated. The doc confirmed no ear infections this go around and said we just needed to ride it out.
Malachi is not showing symptoms at this time but we are cautiously watching him. He just finished his antibiotic for pneumonia and adding a viral illness on the end of that will devastate his system. We have been continuing his breathing treatments and chest therapy to keep his lungs clear and he sounds so much better this weekend than last. He is also perking back up!
We have been in survival mode this week, running on very little sleep trying to meet the needs of the boys. I am really hoping this week leads to some restful nights for everyone.
Malachi threw his head back early last week while coughing and managed to knock my jaw pretty hard from the side. I heard a pop and by the next day I had a line bruise from where it must have slid out of joint. My teeth weren’t lining up quite right and it was difficult to chew and speak clearly but we ended up in the hospital so I just put it on the back burner. It slowly started to feel better but something still just felt off. I have been working with a local chiropractor trying to slide it back into alignment but oh boy, what an uncomfortable issue. It has been the ”cherry on top” of an already hard week.
But we have had some fun moments this week too! On Saturday we headed to a local Christmas tree farm to pick out a tree. We had promised the boys we would go the day after Thanksgiving but Malachi’s hospital stay adjusted that plan a bit. We then planned to go mid week but Levi got sick. Both of them were so excited with anticipation and even though Levi was sick we felt like it would be a fun socially distanced outing for him.
Malachi was practically giddy when we pulled in, incredibly excited about feeling all the trees and picking one out. Levi had stated he wanted a ”spicy” tree (spikey/sharp) but Malachi likes to touch them before making his decision. We thought if we took the wagon this year we could get him up close to each tree and we were right. But we didn’t count on the rugged terrain and Malachi took a wild ride when the wagon flipped over mid hunt. His face was priceless as he tried to process why he was sideways, but thankfully we had him strapped into his Special Tomato seat really well so he was not injured.
After wandering around for an hour we settled on a soft, fat tree and home we went!
We are not big holiday people but we are trying to find a few traditions to establish as the boys grow. The Christmas tree is definitely a keeper and both of the boys thoroughly enjoy having a decorated tree in the house.
Levi has been missing a lot of his basketball practices and games lately so we hunted down a small basketball for him so he and Malachi could ”practice” at the house. Trying to teach a toddler a sport is a very comical experience.
We have been trying to make sure Malachi is included in our basketball practices and Jake and I make it a competition of sorts to see who can help Malachi dribble the best. Here is a video for you:
2 Corinthians 4:6-9, 16-18
For God, who said, “Light shall shine out of darkness,” is the One who has shone in our hearts to give the Light of the knowledge of the glory of God in the face of Christ. But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not abandoned; struck down, but not destroyed;
Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day. For our momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.
This chunk of scripture is worth reading again, and again, and again.
I have been really trying to unravel so many emotions over the last week. I know I have used this scripture in blogs before but it summarizes my current inner dialogue so perfectly.
Afflicted in every way, but not crushed
Perplexed, but not despairing
Persecuted, but not abandoned
Struck down, but not destroyed
But tonight I want you to read that verse through the eyes of my Malachi. And let the power of those words really sink into your heart the way they have rooted into mine.
What a beautiful reminder that our bodies are simple earthen vessels. They were never created to impress. They were never created to catch eyes. They were never created to last.
Instead, they were created to hold a beautiful light inside….a fire that God will stoke and renew day by day if we are willing to be used as a simple vessel.
I think about my Malachi and how silly it is for me to focus on his outward differences when I know without a doubt that God has illuminated the world through his beautifully broken body. Did God not do the very same thing through the body of His broken Son?
I like to picture each new diagnosis, each new warrior mark from a surgery, each new medical issue as another crack in an earthen vessel that allows more of God’s light and joy in Malachi to burst through, radiating everyone witnessing his suffering.
The name Malachi means ”God’s Messenger”. We chose Malachi’s name the day we found out he was a boy, and I prayed this meaning over his life. And oh, how God so graciously answered that prayer. Through Malachi’s life I have come face to face with my God. The scriptures have come to life right before my eyes as we navigate life with Malachi. What a messenger he is for the Lord.
”While we look not at the things which are seen, but at the things which are not seen.” It takes a special eyes to be able to focus on the unseen. But I think that is a reminder my heart really needed this week.
In my moments of desperation, God grant me your eyes to see the unseen. And may He continue to renew our inner person day by day.
We had a medically complex week…one of those weeks that was going perfectly then stopped in its tracks and did an “about face”.
Jake was off for the week and we were looking forward to some family fun. On Sunday Jake took Levi to the golf course for the first time for some bonding time.
In the meantime, Malachi and I cuddled up and enjoyed a lazy Sunday together with the promise of just he and I going to see the new Disney movie, Encanto. He loved that idea and his jealousy simmered down quite a bit.
Wednesday rolled around and we headed to the theater. Malachi really enjoyed the movie and also enjoyed the one on one time with mom. Afterwards we went grocery shopping together which he was excited to do, but he was having a harder than normal time keeping his head up. To be really honest, I was frustrated with him over it. When he chooses to not hold his head up it looks like his neck is broken and driving him through a busy grocery store with a wheelchair and a cart in tow put lots of eyes on us anyway, not to mention Malachi’s broken looking neck.
I asked him if he wanted to buy mom flowers on our ”date” and he signed a quick yes and smiled with pride.
Later that evening Malachi felt a little warm so I checked his temp and it was 99.2. He wasn’t really acting sick or different so I gave him some meds to help him rest, but 30 minutes later his breathing sounded a little more labored than normal so I spot checked his oxygen saturations. It read 85…education moment: obviously 100 is the best saturation you can get. Malachi’s baseline is 94-95. Anything below 88 is hopsital worthy at our house, and I usually pack a bag at 90 to prepare for the trip.
But Malachi still wasn’t really acting sick. So I grabbed the hospital grade pulse ox and strapped it on, hoping that we would get a better reading, but unfortunately it confirmed the low saturation. Malachi was sleepy eyed and drifting off so I made a judgment call to hook him up on our oxygen concentrator and wait until morning to re-assess. I stayed up all night watching those numbers and hoping that the solid rest would magically heal him.
Thanksgiving morning rolled around and Malachi was parked on 2 liters of oxygen. I felt comfortable continuing to keep him at home and treating him there but then his heart rate starting spiking up. Whenever Malachi has an infection that is one of the main ways his body tells me, and since infections don’t typically self resolve I decided this was worthy of a trip to the Emergency Room at the Children’s Hospital.
But I will tell you, I really really really did not want to go. I want what is best for my son, but I loathe spending holidays in the hospital. It highlights some of the hard parts of our journey and attaches a significant date to them. I can tell you stories about specific surgeries or hospitalizations but can’t tell you the month or day. But I can tell you in great detail about every Christmas, New Years, Thanksgiving, Valentine’s Day, Birthday, etc that we have spent in the hospital because of the memorable date attached to it.
In an effort to avoid reality I packed my bags very slowly- one for the ER and an extra in the car with three days worth of supplies and clothing in case they kept us. Which unfortunately they did.
After several tests and several hours in the ER we were admitted for what looks to be a very early bacterial pneumonia. His lungs aren’t terrible yet, which is a blessing. The viral panel came back completely clear but his white blood cell count was high. All signs indicate a lung infection so they are treating it as such.
Friday morning during rounds we talked about a plan for discharge and the doctors left the decision up to me based on my comfort level. While I wanted to immediately nod and sign discharge papers I knew that Malachi wasn’t quite ready to go home. When he napped his oxygen was down at 83, which is dangerously low. But by Friday afternoon he had stabilized a bit more and I brought him home to continue treatment from here. The antibiotics seem to be working on whatever crud is in his lungs and we are doing nebulizer treatments and home chest therapy to break up anything stuck in there.
Malachi’s demeanor never really changed through the adventure. He was in great spirits and not acting like his normal sick self until Friday morning for a few hours. I talked up the stay, presenting it like a slumber party for just he and I, and he really liked that concept. We watched movies together on the hopsital bed in between nurses rounds, doctors visits, and chest therapy.
We had big plans to pick out a Christmas tree and soak in the last few days of Jake’s time off but those plans have been put on hold until Malachi is back to a safe zone. He isn’t worse but he is progressing toward better incredibly slowly. I have canceled our appointments this week and we will be focusing on healing.
But for conversation sake, let me rewind the week a bit and share some fun things! We officially brought home the batmobile for the boys!
And Malachi couldn’t stop smiling.
While we were in the hospital a wonderful friend helped Jake clear out some trails in the woods behind our house to we could go trail riding. I bundled Malachi up and tried to take him out for a much anticipated trail ride but he ended up having a pretty big seizure once we got out there- I think we tried a little too soon.
The boys got some much needed haircuts this week and Levi looks like a new kid!
Basketball for him has been…umm…interesting. I took him to his game on Saturday and I had several fans laughingly tell me that he was their favorite to watch. I am not convinced that is a good thing! I think it is safe to say that I have a class clown on my hands who loves to entertain. He ran up and down the court with his arms inside his jersey for a huge part of the game.
He snuck into the closet, determined to wear dad’s basketball shoes to the game and was mortified when I told him no…and made him put on shorts.
Levi wanted to give Malachi a real hug after his hospital stay so we found a way to make it work.
If I am being honest, I have not been in a great place emotionally and mentally. The day we got home from the hospital Jake started coming down with a cold. He is masking up in the house and washing hands often. I am cloroxing the house frequently but it is really hard with Malachi’s level of hands on care to keep these germs from him. Not to mention little Levi, who slept face to face with Jake while we were gone. When he gets a common cold he vomits non-stop from his airway anatomy when swollen.
While we were in the hospital the rounding doc and I had a pretty hard conversation about how the majority of children with Malachi’s severity of care pass away from lung infections. He explained that the more Malachi grows, the harder time his lungs will have keeping up with managing sickness. Coming home with pneumonia (but a clear viral/respiratory panel) and being introduced to a cold is a recipe for being right back in the hospital. And the ominous thought that one day a similar scenario to this one might lead to me leaving the hospital empty handed has been hard to handle.
I continue to pray over Malachi’s death, asking God to protect him from pain and suffering when he calls him heavenward. Oh the faith this journey of motherhood requires. But I have nothing else to cling to.
I have shed a lot of tears this weekend, overwhelmed with the suffering that hides around the corner in wait for our family. The reality is that our journey will never get easier. It will only get more complicated, more messy, and more heartbreaking. And I just really don’t want to accept that.
On Friday night I got Malachi settled with all his gear and went to take a burning hot shower, something I always look forward to after stays in the germy hospital. As I looked in the mirror I didn’t recognize the person staring back at me. The dark circles, the gray hairs, the added weight, the dark and lifeless eyes. As I stared in the mirror I couldn’t help but wonder what God sees in me that I can’t see. Clearly in his sovereignty He feels that I am the perfect person for the job of raising Malachi and Levi, but I just can’t seem to see the same things He does. I just feel so ill equipped. And so incredibly alone navigating a world full of suffering. My mom heart wants to protect them from pain, but it just isn’t possible.
I have had to face a reality that my job isn’t to keep Malachi alive- the timeline for that is in the hands of God, where it should be. My job is to be Jesus to him during his time on earth.
Matthew 25 tells us ”For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink…I needed clothes and you clothed me…I was sick and you looked after me.”
”And the righteous will answer him, ’Lord when did we see you hungry and feed you, or thirsty and give you soemthing to drink?…Or needing clothes and clothe you? When did we see you sick…”
”The King will reply, ’Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”
As much as I want to be Jesus and give my boys the miracles they so desperately need, that is not my role. My job is to love them fiercely, the way that Christ loves them. I am to imitate and show Christ to them so when they meet the real deal the they run towards Him with open arms. And in a world of unknowns and impossibles, that is a role that I can focus my energy on.
My prayer this week is a selfish one…that God gives me His eyes and allows me to see myself through His lens. To be able to get a glimpse as to why God has entrusted me with such a heavy but beautifully imperfect journey. The blessings far outweigh the difficulties but when I am swimming through rapids I can’t seem to get my mind on anything else.
And please pray for Malachi, that he fully heals and God protects all of us from Jake’s cold. Pray for a week of strengthening both physically and emotionally.
Thanksgiving week is here! Where we live in the south they close schools for the entire week and the break truthfully couldn’t come at a more needed time. Malachi is back to rough nights and seizures. He always struggles when the seasons change. Having Jake home to hand him off to in the mornings is such a blessing.
One of the most challenging parts about the special needs world is dealing with the unpredictability of it. Routines are not easy to establish when you are battling epilepsy and one seizure can change the course of the entire day. I have learned not to plan too far in advance to prevent myself from feeling disappointment and frustration when things don’t go like I envisioned they would.
Malachi had to have some work done on his orthotics this week and Levi has outgrown his! With Malachi’s AFOs they can heat up the material and remold it when it gets too tight and starts causing pressure sores. Levi’s are shoe inserts so we can’t modify them but rather just order the next size up.
We did get some fun news this week- a few weeks ago I wrote a letter to a local grant board about using some grant money towards a golf cart/UTV for the boys so we could spend more time outside and on family ”walks”. It will also make outings to non-handicap accessible settings something that Malachi can now do. We have to say no a lot these days because it is logistically not possible to get Malachi there, and the larger he gets the less safely I can carry him for long distances.
We received the formal approval and have been working with a local company to find the perfect machine for the boys needs. We are planning to pick it up this week and Malachi is absolutely thrilled. When we went for a test drive he got the giggles just sitting in it. Then we drove it for a bit, him smiling ear to ear the whole time. I turned to Jake and said “I guess we need to go back now.” And when Malachi heard that he started crying crocodile tears. He DID NOT want to stop riding it, and he cried the whole way back to the parking lot.
We did let him choose the color, which he was excited to do signing no for red and blue and a hearty yes for black.
Education moment: Grants. There are several organizations around the country that like to help in situations like ours. They recognize that much of our income goes towards the non-fun medical things, like appointments, therapies, and procedures. The offer small amounts of money in the form of grants that you can apply for and use for the things insurance often does not cover (diapers, medical tapes, specialized equipment, etc) There is an excellent grant in Chattanooga for surrounding counties and we have been blessed to receive it for Malachi since he was 2 years old and Levi since birth. Each year we have applied we have been granted $2,000 for each boy each year. Initially I used those funds for medical things but as the years went by Jake and I changed our mindset to ”quality of life” things that enrich their everyday. Things that we dream of for our boys but could never justify depleting savings on.
We have used it towards the therapy pool, the playground, switches for Malachi, adult sized changing table for Malachi, tube friendly onesies for Levi, special mattresses and beds for safer sleeping, specialized formula, medical tape, oxygen concentrator, etc. We applied for other grants when Levi was born to help with some of the extra medical expenses incurred from being in the ICU for 131 days. The applications are typically tedious and long but I understand why.
The insurance side of special needs is brutal and often offensive. For example, we received a denial for a bath chair for Malachi to help support him for showers because they said it was a ”comfort item and not medically necessary”. This week we received a denial for a chair for Malachi we ordered in July because we already had a chair (that he has outgrown and Jake and I paid for out of pocket) that should be sufficient. These companies are most definitely not on our side for things, so finding grant companies willing to help and make things easy are a breath of fresh air. We spend months meticulously planning what to spend the granted funds on, and being able to dream about some bigger items and projects we could do is actually really fun.
There are some weeks that I am more emotionally fragile than others and for some odd reason this was one of them. Throughout the week I felt like I was on the verge of tears but I couldn’t seem to figure out why. Last week was Levi’s birthday, which usually equals a fragile week but the emotions stalled for a week.
I have been reflecting so much on our journey with him and remembering those hard conversations surrounding his birth and diagnosis of bilateral vocal cord paralysis. The only option we were presented was to put in a trach and a g-tube and wait and see if he was part of the 50% with this diagnosis whose vocal cords “wake up” and are no longer paralyzed. If this will ever happens it happens by the age of 5.
Levi just turned four last Sunday and his vocal cords are still both paralyzed. We have not seen any improvement in those vocal cords and our chance for ”normal” function is whittled down to less than 365 days. And as much anxiety as this brings me now I can’t imagine what life would feel like had we followed through with a trach. The reality that he would need it for a lifetime would have most definitely been hard to take in.
Thanks to some brave surgeons and a rough start in life, Levi will be able to live life without a trach. But the diagnosis is still there and the dysfunction still exists. The specialist appointments, the surgeries, the continual monitoring will continue until those cords start moving. Oh how I long for an easy life for him. The reality of hitting 4 knowing that the final outcome is determined by the age of 5 hit me in a weird way this week.
This week I took Levi into Hobby Lobby for a few minutes to grab one item. We walked straight to it and then straight to the cash register but on the way there Levi and his busy hands found a very breakable decor item on a display near the floor and I watched it domino with a crash. My internal voice was willing ”Don’t be broken, don’t be broken” but as I picked it up off the floor I saw that the damage had been done. Levi was wide eyed, knowing he did something bad but also knowing he didn’t intentionally do the bad thing. I was admittedly frustrated and explained to him that when we break things that aren’t ours we have to spend our money and buy them.
We got up to the counter and the cashier scanned the item as I crossed my fingers hoping for a 50% off miracle on this weird and now broken item. I explained the accident, hoping for a little Hobby Lobby grace but also knowing that doing the right thing with Levi watching was more important than saving $9.99. But it rang up as full price and in comedic fashion the cashier very gently wrapped the broken item in paper and put it tenderly into a bag.
When we got home I pulled it out and put it up on the windowsill, not quite sure what to do with it. Even whole I would not know what to do with it haha. And each time I looked at it throughout the week I felt a pang of bitterness that I paid full price for such a broken item.
I was doing the dishes a few days ago and looking at the odd little figure and it suddenly hit me that this was such a parallel to our journey with our children. As society we assign value to whole, perfect, and typical. The slightest blemish on an item and we expect to see it sent to a clearance bin or taken to a manager for a price reduction. Our eyes no longer see it’s worth or value.
I thought of my two beautiful boys, each with their own blemishes and differences. Each with spots of damage speckled in their brains. Each with whole body issues because of this brain damage. Each with layers upon layers of diagnoses. Many look at them in the same way I look at this figurine…less than and damaged.
But God has taught me through each of their testimonies that there is so much unique beauty in the broken. The things we deem as broken God sees as uniquely and wonderfully made. Sometimes God’s creations don’t look like the rest on the shelf, but it is through those pieces that stories full of God’s goodness can be written.
We were created in God’s image. Not his physical image, but rather a reflection of His character, His qualities, and His goodness.
I am going with a well known verse for this evening’s devotional thought:
13 For You created my innermost parts; You wove me in my mother’s womb. 14 I will give thanks to You, because I am awesomely and wonderfully made; Wonderful are Your works, And my soul knows it very well. 15 My frame was not hidden from You When I was made in secret, And skillfully formed in the depths of the earth; 16 Your eyes have seen my formless substance; And in Your book were written All the days that were ordained for me, When as yet there was not one of them.
17 How precious also are Your thoughts for me, God! How vast is the sum of them!
When I read these verses and apply my son’s names into the pronouns I find myself feeling ashamed for mourning over their differences. Yes, it was something I never expected to receive- I expected whole and perfectly formed and functioning. But God formed my children and their differences were also skillfully formed…which means they are perfectly imperfect. And He made them in His image, to bring Him glory and honor. Why do we place so much emphasis and value on the seen qualities?
I know by now you are likely rooting for the random Hobby Lobby bathroom man mascot that sits on my windowsill. I can’t promise you that he will find a home here, but I can promise you that God intended to use him to remind me that His eyes and my eyes don’t share the same vision. And just like the creepy figurine in my window, my children have been gifted with journeys and stories that leave the fingerprints of God wherever they go. What a blessing a life full of God’s fingerprints can be.
This week my heart and eyes are set on looking for the imperfect things in this world and seeing their God given value, as hard as that can sometimes be.
Happy birthday to our sweet Levi. This week I have been really thinking about the plans God has in store for Levi and my curiosity has been flaring. Watching him move steadily through the milestones and stages of life has brought a healing to my heart…I always feel bad admitting things like that, as if stating it de-values my journey with Malachi. If you know me you already know I treasure every bit of my Malachi, even the hardest parts of our walk as they have heated my up and re-molded me into a new creation. Levi’s journey has just been so incredibly different and those effortless moments of progression are so energizing.
Levi’s empathy is unmatched for a child his age, and undoubtedly having a brother that needs some extra help often has something to do with that. It is rare that Levi doesn’t cry during an episode of Daniel Tiger as he feels all of the emotions from each character. He celebrates Malachi’s achievements more than his own and is his brother’s biggest fan. Levi started playing basketball this week and he was more excited about Malachi getting to help ”coach” then he himself being able to play. He also chose to go bowling this afternoon for his birthday and Levi celebrated Malachi’s bowling achievements way more than his own. What a blessing they each are to one another.
Speaking of basketball, oh boy. First of all, check out this baller in his jersey and new birthday basketball shoes.
And now let’s talk about how much fun we had watching him play. There’s our #12 playing some serious defense.
He has zero basketball knowledge and lots of soccer knowledge so when they use the soccer terms he knows (pass, dribble, shoot) he defaults to his footwork. He would set the ball down by his feet so he could obey what they were asking him to do. We have several funny videos but here is one of my favorite ones; the coach told him to dribble:
And this one when the coach told him to pass it:
But he absolutely loved the idea of being on a team, practicing, and games and it has been a talking point all week. Seeing his excitement to put on his jersey and go to practice was just precious.
Malachi is definitely dealing with some jealousy and we are starting to enter uncharted waters that need to be navigated delicately. I explained to Malachi that Levi’s team was only for the younger children but that he could also get a jersey to wear to the games and he could help coach. We programmed his recordable switch with a whistle and his job is to blow it any time the other coaches blow theirs. He likes the game of listening and trying to be on his A game. I took a video of him as well and it makes me smile:
We let Levi pick out some activities for his birthday and stop #1 was bowling at his request. He lasted about 6 frames which was longer than I anticipated.
Malachi wasn’t “into” it until I informed him he was beating Levi. Then he really came back to life quickly. The empathy thing I mentioned before is most definitely a one way street with these brothers. And Malachi has a spirit of competition in him. He was very particular about wanting to bowl without help from mom and dad so we try to be as hands off as possible after we set him up for success.
After bowling I told Levi he could have a special birthday treat; anything that he wanted! I offered suggestions like pizza, mac and cheese, ice cream, a slushee…
And he was insistent that his one and only birthday wish was a kids ice water from McDonalds. And that is just what he got!
He got a ”need” gift with his basketball shoes and a “want” gift with a pack of superhero costumes for him and Malachi to share. And he was one happy birthday boy!
Levi’s g-tube had been causing some irritation over the last few weeks so the doctor upgraded us to a slightly longer stem. They came in the mail this week and when I opened the box Levi knew from experience exactly what was about to happen. He started crying but then shocked the socks off me by requesting that we put the new one in right away. What a good sport he was! Then today the new balloon burst and his g-tube slipped out. So he had to do another tube change but again he impressed me with his newfound maturity to understand when things just have to happen.
Malachi’s seizure control has been so so so good. He is still having daily seizures but most of them are very short and less intense.
I have been working so hard to try to get him into bed earlier than his typical 3am. We are slowly making progress and last week he was averaging between 5-6 hours each night, hallelujah!
Malachi also spent a few afternoons at school this week. I asked him on Wednesday if he wanted to go to school and he signed no. But Thursday and Friday was an adamant yes. He is only going for about two hours each day, twice a week. Even that brief period of time tuckers him out.
As usual, today has bubbled up so many emotions and memories for me. Some of the most amazing moments in my life also qualify as some of the most heartbreaking. Motherhood has been such a unique blend of joy and mourning and birthdays are such vivid reminders of that blend.
I will never forget the heart flutters I experienced when I laid eyes on this photo for the first time.
I was not awake for Levi’s birth and Jake had this photo to share with me when I woke up from surgery. I remember so much anxiety lifting from my shoulders when I saw this photo and felt the emotions rising up from the base of my throat. I thought he was one of the most beautiful things I had ever laid eyes on and I don’t even remember seeing the ventilator tube. All I could focus on was his healthy color and how much he looked like a healthy baby.
Today Jake and I were talking about our crazy life and I was explaining to him how lately I have felt like I am in an inner tube racing down a raging river. I have no paddle and no control over where I am headed downstream. I can only see a few feet in front of me on my journey but there are lots of bends in the river with surprises waiting, some good and some bad.
When I first ended up in this inner tube I panicked. I fought against the river, exhausting myself against its current. I wanted out because I wasn’t equipped for the journey. But as much as I screamed and pleaded with God about my inadequacies He did not stop the inner tube. Everytime I hit a rock and sprung a leak I tried to use it as evidence to God that I was not equipped. But he covered the hole and asked me to keep floating and trusting in Him.
I am at a point where I have embraced and made friends with the river. The river has calm waters and the river has rapids. But the river is ever flowing, carrying me somewhere new.
Greek philosopher Heraclitus said ”No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.”
I could spend time breaking this down for you in terms of my life, but I feel like it just needs to simmer in your mind and my time is meant for more biblical things…
Mark 14:38 ”Keep watching and praying, so that you will not come into temptation; the Spirit is willing but the flesh is weak.”
I have been really processing these words. The spirit is willing, but the flesh is weak. It is such a simple sentence yet oddly profound.
This sentence came from the mouth of Jesus after He had instructed His disciples to keep watch while He went to pray before His arrest. When He returned and found them sleeping you can hear almost a tone of exasperation ”Simon, are you asleep? Could you not keep watch for one hour? Keep watching and praying, so that you will not come into temptation; the Spirit is willing but the flesh is weak.”
This verse summarizes me very well this week. My spirit longs to be used by God in big ways. I desire a thriving and effective walk with the Lord. My spirit is oh so willing.
But my flesh is also so weak. So incredibly weak.
This verse says a few key words at the beginning…”Watch and pray”. I realized this week that I am not doing nearly enough watching and praying these days. I let down my guard and allow the enemy to sneak in. The action it takes to be a follower of Christ is an every second, every minute, every hour action. It is not a passive role.
Christ’s words for His disciples could very much be the same words He has been laying on my heart: ”Could you not keep watch for one hour?” And in my laziness and my distractions I have allowed my spirit and my flesh engage in battle.
Galatians 5:16-17 ”But I say, walk by the Spirit and you will not carry out the desire of the flesh. For the desires of the flesh is against the Spirit, and the Spirit against the flesh, for these are in opposition to one another, in order to keep you from doing whatever you want.”
My desire this week is to end the battle, even if it be ever so brief, between the flesh and my spirit. That is a war that will continue to wage within us for our time here on earth. And it is a war we accidentally find ourselves in the middle of sometimes without intentionally enlisting, but it is a messy one nonetheless with lots of casualties.
This week my motto is: Walk by the Spirit, walk by the Spirit, walk by the Spirit.
When I am focusing on walking by the spirit my mind will be too engaged to focus on the things of the flesh.
I know I am mentioning some pretty meaty words and concepts in this week’s blog, If you ever have any questions about some of the ”Christian terms” I have been tossing at you please don’t hesitate to email me at email@example.com
Thank you for listening to me ramble each week without complaining. You all are a very special bunch and my family is very blessed to have such a great support system.