This week we visited the GI doc for weight checks and g-tube talks. When I talk to the boys about this appointment we call it an “easy one” because it is just talking and very minimal interaction between doctor/patient. Levi is still carrying some major anxiety in medical settings, but really did well regulating his emotions in this one.
We are in the season of preschool life where he wants to dress himself and doesn’t always put things on the right direction, so ignore our backwards shorts and mismatched outfits…it simply just isn’t worth the battle.
We have incorporated a lot of big changes in Malachi’s medication routines and daily routines in the last year due to his lung condition, and one of the side benefits from these changes has been weight gain. He is not working as hard to breathe with the new regiment (cough assist and antibiotics every Monday, Wednesday, Friday for lung bacteria) and he is able to put on a little more weight.
This has obvious pros and cons. The doctor is pleased with his growth, but he is still significantly smaller than a typically developing 9 year old at just 38 pounds. We could always increase his caloric intake each day but we are also recognizing that the larger he gets the more physically difficult it will be to safely care for him. So we are always working towards that delicate balance of health and strength, making sure his nutritional needs are met.
Levi is weighing in at 36 pounds and the GI doc seemed pleased with where he is at on the charts. Levi’s breathing also makes him burn more calories throughout the day so we are continually working to find that balance for him based on his physical activity each day. He is eating food by mouth often and frequently, but it still isn’t enough to sustain him. Right now we are giving him 4-8 ounces of high calorie formula through his g-tube during the daytime and he also gets about 20 ounces through his tube while he sleeps at night.
Every day is a new feeding routine for Levi based on what we have planned for the day and how active he will be moving. His mood is very much affected by his caloric needs, so if we don’t plan well with extra feeds we are dealing with a very cranky, hungry 4 year old who can’t be fully satisfied by table foods.
Over the last few years I was very hopeful we would be able to get Levi to the point where he wasn’t dependent on the g-tube. Now that he is taking seizure medications twice daily and his activity level is increasing (meaning work of breathing is also increasing) I have put those goals to rest and we are simply accepting where we are at right now. Our only goal is health and growth for right now.
Speaking of breathing….this week we did several play dates with friends. Levi’s stridor (noisy breathing) came back often during friend time and having breathing safety back on my radar is disheartening. It has been a reminder of the long term nature of his diagnosis and the ever changing anatomy and safety we are dealing with. I am having to remind his often to sit and rest so he can catch his breath.
With Jake back at work and the boys being stuck with just mama each day we are seeing a huge increase of jealousy between the boys. Levi will verbally affirm this saying “Malachi is getting ALL the attention.” And when Malachi is feeling those same emotions with Levi he signs NO and makes sure I see that he isn’t happy.
Today Levi has been upset because “Malachi has more best friends than me”. To which Malachi avidly signs YES YES to. The triggers for each new frustration are comical.
I went out with a friend this week and had the boys with me. Levi got to hand the cashier the money which set Malachi into a NO face and seething with jealousy. So I let Malachi hold the receipt and carry some forks.
The fork carrying set Levi into a fit of jealousy, crying because he wanted to hold the forks. Malachi then repeatedly waved the forks in the air in a gloating fashion, making sure that Levi saw him continuing to hold the coveted items.
And if I am being completely honest with you all…
I am loving it.
Seeing such normal brother behavior has been such a gift. Seeing them bicker in their own ways has brought me so much joy and reminded me that God is a loving God, sprinkling our challenges with glimpses of normalcy.
The love that they have for one another is unique and special. To Levi, Malachi is simply his brother. And I love the pure relationship they have- unpolluted by the world and it’s standards.
And even the bickering has unlocked so many new moments of communication with Malachi and increased his desire to be heard. Having Levi around has become the motivation he needed to let his voice be heard.
Our days are still filled with lots of challenges, lots of seizures, very little sleep, and a whole bucket full of varying emotions. But we are healthy, happy, and thriving.
Transparency time: digging into God’s Word has been hard lately. I am still making time to open my Bible and spending time in prayer (OFTEN) each day, but the mental cloud that is following me during this transition time has been making it challenging.
When I go through cloudy seasons like this I try to saturate myself with God things. We play a lot of praise and worship music, I play the Bible app reading scripture as I drive to appointments, and I try to pick one scriptural truth to repeat over and over again each day to myself and to the children.
Being youth pastors we spend time in the word each week preparing Bible studies, but a relationship with God is such a personal one. Taking time to connect with the Father in my personal struggles and worries is also vital.
As I read through 1 Peter this week this particular verse caught my eye and got the wheels turning in my brain and heart.
1 Peter 3: 4 “but let it be the hidden person of the heart, with the imperishable quality of a gentle and quiet spirit, which is precious in the sight of God.”
The hidden person of the heart.
This led me to so many questions: Is the outward person that I present myself to be the same as the hidden person of the heart that God sees? Does my heart reflect a gentle and quiet spirit?
And as I processed those questions I felt the Lord gently pointing out the “loud” in my life. Pointing out the ways that my flesh contradicts the Spirit of God inside me.
We don’t have to focus on practicing or creating the gentle quiet Spirit inside of us, this hidden person of the heart. That is Christ in us, who has transforms us into His image. He does the work for us as we simply connect to the Vine.
Sometimes I need that reminder that a walk with God requires a heart of humility and gentleness. A soft heart instead of a heart of stone.
Ezekiel 36:26-27 “I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws.”
This week I am thankful for the gift of the Spirit of God inside of me. May we never take that blessing for granted.
Please pray specifically this week for an unspoken prayer request in our family. And pray for our endurance as we continue to settle into new routines.
This week was a “to-do list”week. My brain was swarmed with the many time sensitive things that need to get done in addition to the hourly tasks that being a mom (and a medical momma) requires. I could tell I was starting to become fragile. I don’t know if that ever happens to you, where you feel like you might start crying at any moment? So in an effort to regroup I started the to-do list and celebrated each checkmark I successfully put on it after each completed task.
It is still incredibly long, but the items I have left are the ones that require time AND mental focus. I am able to sacrifice the time but not quite ready to expend the focus. Maybe this week I will have the clarity of mind to knock a few more things off the list.
One of the biggest setbacks from our wonky sleep schedule is that my prime focus hours are between midnight and 3am, and unfortunately the places I need to call and coordinate with aren’t open during that time slot haha. And yes, Malachi is back to wild sleeping again this week- I celebrated too soon. His oxygen levels have been dipping a bit right before bedtime so we are using cough assist at night as well to help clear his throat.
Aside from oxygen dips and very little sleep, Malachi is doing amazing. He has been hilarious these days with his strong opinions and imagination. The jealousy between Levi and Malachi is at an all time high, and I can only assume Levi’s trip to Ohio fueled that fire. If someone that Malachi really loves talks to/about Levi he rolls his eyes and signs no.
And Levi reciprocates the jealousy. Today he got mad at Malachi and said “I’m going to say something mean to Malachi. Malachi, I don’t like your wheelchair.” This is new territory for us to deal with and to be honest, it is somewhat entertaining to see one verbal child and one non-verbal child get so frustrated with each other. It is a precious gift of normal for us as parents, even though sometimes it doesn’t feel that way in the moment.
Levi is exhibiting some behaviors that we often see post op. He is highly emotional and very guarded, still dealing with trust issues with me specifically. This is always a hard season for us both. These emotions flared at therapy this week when they switched gears and had a giant water slide for the kids instead of riding horses. I talked him through this change and he immediately spiraled.
But then there was Malachi, happy as could be to be flying down the slide like a rocket.
Friday evening Levi pulled his shirt off to get in the bath and in the process it caught his g-tube and pulled it out. This usually causes a quick moment of pain and then sheer panic sets in. Think of an earring getting tugged out of your ear with the back still on. He is very sensitive about his tummy tube and panics often over it with the slightest bump or twist. So to have it come out set him into a frenzy.
The balloon itself (think of it as the “earring back”) popped from the incident so we had to put a whole new unit in. When he was young I could hold him down and get the job done but now that he is larger it takes negotiating and lots of patience. When he is crying and screaming his abdominal muscles contract making it hard for me to get the stem of the tube into his stomach. So we have to get him to calm down and then try insert the new tube.
Fun fact: insurance only allows us to get 4 g-tubes a year for each kid (they have different sized g-tubes). We are supposed to change it every 3 months because the inner components can get worn down from the stomach acid. But I typically try to get 3-5 months out of each one so we have some cushion.
But here is the frustrating part about this week’s incident…I JUST put that tube in for Levi while he was still under anesthesia in Cincinnati two weeks ago. If he has a surgery I try to time the g-tube change with it to reduce the trauma at home. So now we are back to the anxiousness of trying to get a few extra months out of each tube.
I didn’t take very many photos this week due to my mind being focused on other things. But I absolutely love this video of Levi from 2 years ago as he was practicing jumping. Look at that sweet baby:
Malachi is officially registered as a homeschool student this year and I am going to attempt to re-establish routines and structure. Typing that makes me nervous. When I set out to re-structure it often creates opportunities for disappointments and reality checks. It is hard to plan any further than about 6 hours in our world, and when I come up with a beautiful plan on paper something always hijacks it leaving me disappointed.
Getting Malachi to a school building each day by a designated time is just simply not in his best interest. His morning routines take hours and his sleep habits are ever changing. We also worry about the amount of sickness he is exposed to in the school system.
This week I have found so much encouragement in Hebrews 12:1-3 and I am hoping it blesses you too.
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.
I have been feeling convicted lately to re-evaluate my life and find the things that “hinder” and “entangle” like the verse mentions. What things are keeping me distracted from my calling as mother, wife, and daughter of the King?
I am most definitely running a race and weeks like this one cause me to question my perseverance. I think perseverance is a mindset so when it is lacking it usually means that my mind is focusing on distractions. Weariness sets in when I allow myself to look to the left and the right, desperately searching for signs of progress in this race. But faith means I trust God, even when I am running in place and not making any forward motion.
God isn’t looking for progress in our race. He is looking for perseverance and intentionality with each step. He is looking for eye contact.
When was the last time you fixed your eyes on Jesus?
Please pray for us this week as we continue to navigate new routines.
Our final week of summer break has officially ended and I am mentally trying to pump myself up for mothering solo. It is always blessing having Jake home and being able to split the responsibilities. He heads back to work in the morning, and it will take a few weeks for the boys and I to acclimate again.
Malachi has settled into a very manageable and generous sleep cycle, going to bed by 2am and not waking up until 9. We never know how long each new cycle will last but I am really hoping this can be his new norm for awhile.
In an effort to get Levi to sleep until 9am I am putting him to bed at midnight. It is difficult to have to tailor one bedtime to suit an ever changing one, but it is the only thing I can think of to preserve a bit of sleep for myself.
Levi has recovered well from surgery last week, but is still having some issues with aspirating. I am not completely sure why this issue is lingering post-op and I am a tiny bit concerned. He has also been extra cranky this week, but I am thinking this is more of a caloric needs issue- and the two issues could possibly be related. If something is making it uncomfortable to eat and drink then his blood sugars can get wonky. I am going to start doing some daytime g-tube feeds with him this week to see if I can notice a difference.
Excuse the play room explosion in the above picture! We had lots of play dates this week!
The soccer team that we coach hosted a soccer camp for kids this week and Levi had so much fun! We ran them through stations and by the time he made it to mine he had a loud stridor and his little ankles just couldn’t handle anymore activity. They were folding out, even with his braces and supportive high top shoes.
If I am being honest, this realization made me so sad. I had convinced myself after our indoor kids soccer league that Levi was going to be able to play sports, despite the initial reports from doctors that many children with his condition cannot play sports that involve running. Watching him fatigue so quickly and breathe so hard made me process that Levi may have to be selective in his hobbies.
Malachi has been growing so much lately and is getting heavier and heavier! He also has been so playful and full of energy. He has gone from swimming for 30 minutes at a time to over 3 hours!
Malachi is also cognitively growing in so many ways. He is 100% aware of every conversation had in his presence. He is aware of when he is included and keenly aware of when he is being excluded. Before Levi was active we were able to get away with a lot more, but now Malachi is aware when Levi is being given the chance to do something Malachi cannot. As a parent, it is so hard to balance when to prevent Levi from doing something for Malachi’s sake and when to allow Levi and try to help Malachi process through those emotions.
This week we went to a local climbing place for a family members birthday party. Malachi was completely fine until all of the kids started climbing, then his emotions changed. It is a hard decision for us to make…do we keep him home from these events to spare him from feeling excluded (not intentionally by people, but by experiences) or do we continue to take him and have lots of conversations before and after to help him have realistic expectations?
The medically complex life is full of decisions that I do not feel prepared to make. There are no books, manuals, or mentors who have walked the exact same journey I am called to walk. Even other medically complex moms can only offer suggestions, as each child with complexities is so incredibly unique.
I find my prayers often diverting to the same theme…wisdom. I often pray that God gives me clarity of mind, grace for my moments of regret, and lots and lots of God-given wisdom.
This week I spent some time studying Solomon in his prayer for a discerning heart from 1 Kings 3:7-9. I actually have been really debating whether or not wisdom and a discerning heart are truly the same thing. But nevertheless…In verse 5 we read: God said, “Ask for whatever you want me to give you.”
Solomon speaks back to the Lord with this request:
“Now, Lord my God, you have made your servant king in place of my father David. But I am only a little child and do not know how to carry out my duties. Your servant is here among the people you have chosen, a great people, too numerous to count or number. So give your servant a discerning heart to govern your people and to distinguish between right and wrong. For who is able to govern this great people of yours?”
There are so many powerful, noteworthy things in this tiny chunk of scripture. The first being God’s sentence to Solomon. He didn’t speak like a genie in a bottle, offering to grant one wish. He simply said “Ask for whatever you want me to give you.” There was no promise of granting the request, just a relational moment between the Creator and his creation, wanting to hear his heart.
How often do we verbalize to God the things we desire? If we see God as our Father, why do we keep our heart’s desires hidden from Him?
Solomon’s response related to me in so many ways. Particularly the part of “But I am only a little child and do not know how to carry out my duties.” WOW what an accurate portrayal of the special needs parenting world. But the more I read it the more I recognized all the other ways in which this sentence applies to my other roles (and possibly yours). Inadequacies are rampant in our callings in life. Very rarely do I feel confidently qualified.
Which reminds me of the importance of humility in our walk with God. Oh the beauty of God shining through our inadequacies and filling the holes in His perfect way. And what a faith building scene to witness.
I was also struck by Solomon’s word choices in his prayer to God. His continual reference to himself being a servant to God is such an honoring stance to take. It is easy to view myself as a child of God, a role that is bestowed by His grace and atonement. But to in turn view myself as a servant of God, someone who desires to carry out the tasks He has written for me…what a beautiful gift it is to God when we look for ways to bring Him glory and honor. What a transformation of faith we can experience when we wake up every morning, looking forward to the to do list written for us by our God.
Please join me in praying for a discerning heart as we navigate this complex world. And pray specifically for our transition as Jake goes back to work.
Also, please be in prayer with me about this blog. We have written an entry every week for over 9 years and I don’t feel led to stop writing. But I do periodically prayerfully reconsider the frequency of entries. I write for myself mostly, to be able to give room to process emotions in a safe place. But if even one person can draw closer to God each week then it is worth continuing. Please join me in praying for a very clear direction from God.
Obviously this week’s update is going to be a pretty lopsided one with a whole lot of info about Levi, but know that sweet Malachi has been such a love bug since we came home. He has been snuggling me each time I pick him up, and having him show so much extra love has been just what my momma heart needed after this past week.
Aside from this surgery week each year, Malachi and I are never really apart. Traveling away from him brings anxieties, but Jake did an excellent job!
Before the trip we snuck to the bowling lanes at Malachi’s request for a quick game since his special trip was postponed. We even rented him bowling shoes- the little things that used to not matter to him now matter a WHOLE LOT now that little brother is in the picture. And we are happy to oblige!
Levi asked to ”hold” Malachi one final time before we left and I snapped a few pictures from their sweet encounter .
Levi and I hit the road early on Tuesday and drove straight to his first pre-op appointment with pulmonology. The doctor was very pleased with Levi’s progress and said ”He is remarkable!” He also explained again that Levi’s diagnosis of bilateral vocal cord paralysis with unknown cause (idiopathic) is “very, very rare. I only have two patients with his diagnosis and he is one of them.”
On that note, I was doing some researching late one night this week and pulled up some studies on the things we have done so far for treatment with Levi. I was reading an abstract from a case study on the first experimental procedure he had done and BOOM I was able to spot Levi (nameless of course) from the study results. Reading these reminds me of blessed we were to be able to work with the surgeons in Cincinnati to find a solution. We are “the one”!
We spent our time in between appointments this week trying to find things to do with a very busy four year old that 1) aren’t germy environments and 2) not crowded places. That proved to be a hard task but we managed.
We are originally from Cincinnati and still have family all over the area, so we spent a lot of time visiting family and stayed with Jake’s parents for the week.
There are several Cincinnati restaurants we try to hit every time we travel north. Last year Levi was just learning how to eat and was still primarily g-tube dependent. While he is still dependent on it for 700 calories each night, he is eating all daytime meals by mouth. The difference between last year and this one is shocking!
We spent time with two of Levi’s great grandmas and one of them lives in a very large assisted living facility. She was so excited to show Levi off to her friends so we spent several hours there with her; as we headed down to meet them Levi asked ”Mommy, will grandma’s friends be dressed modest?” I told him I sure hoped so! His vocabulary these days is growing.
He also asked me at one point: ”Mom, is grandma really old? We need some new grandmas.”
All week long we dealt with some pretty big emotions about the looming surgery. When the petting zoo made him put on a paper bracelet it triggered some anxiety and behavior. We talked about surgery every day and night, going step by step through the process and what to expect. But he still continued to cry himself to sleep with anxiousness each night.
The night before surgery my heart ached when he said in such a contemplative way: ”Mom, I’m just a little bit different.” I wish their was a training on how to navigate these conversations with a medically complex child. I feel so ill equipped.
Levi’s check-in for surgery was Friday morning at 9:30. Little known fact about surgery scheduling- they often try to start with the youngest patients since you have to go NPO (no food or drinks) the night before. The older he gets the later that check in time will become.
He fought me but finally put on his surgery day shirt and we headed out.
Levi’s regular ENT surgeon was sick this week and Dr. Rutter was doing her surgeries for her. Rutter is the doctor that helped develop Levi’s experimental procedures and the one I talked to prior to his transport from Chattanooga. He was our first point of contact and gave us so much hope!
I remember vividly being in Levi’s NICU room and his surgeon coming in to tell us she thought we had officially exhausted all other options aside from the trach. She brought the consent forms in for his trach surgery, and after nearly 5 months I felt like I had lost our battle. I remember pulling out my pen, and at the last second asking her, ”I don’t mean to be offensive in any way at all, but would it be possible to talk to Rutter one more time?” She was so, so kind and brought Rutter in later that day. I looked him in the eye and said, ”I need you to tell me there is nothing else we can do for Levi except for the trach.”
And Rutter took a deep breath and said, ”Well. There is one more thing we can try.” And he proceeded to tell me about the rib graft surgery. It was a very complicated surgery that required four surgeons but he said he was willing to head it up, primarily because he knew the complexity of our lives with Malachi and wanted to find a way to make our world a bit easier.
We get to see him every now and then when we travel to Cincinnati, but I was so excited to get his report on Levi’s progress.
We brought some presents for Levi to open periodically throughout the pre-op wait, and it made the time fly by.
We had considered doing ”silly juice” this year to help him transition to the operating room a bit easier, but he has a history of it causing respiratory distress and I just couldn’t decide if it was worth the risk. When he was younger he was on 1/2 liter of oxygen and had reacted to a dose of Versed (silly juice) that required him to be put on 6 liters of oxygen and almost reintubated. He was handling the wait so well so I decided to pass on the silly juice…but definitely regret that one.
They let me walk him back to the operating room, Levi screaming the entire way. He has never handled this part well but has always been too confused to really process quickly. This year he knew what was coming and the hand off was an excruciating one. I passed him on to the surgery staff, complete strangers, then tried to leave the room as quickly as possible for Levi’s sake. But his eyes were burning through me, watching my every move. He was looking to me frantically for comfort and assurance and I had to walk away.
I am not exactly sure what the long term effects are from these repeated encounters with him, but I worry so much that I am creating a trauma in him that will cause long term problems in our relationship. He stayed very mad at me for about 24 hours after surgery, and I am absolutely sure it is due to the trust break we experienced on surgery day.
But back to the update…
Surgery went incredibly fast and did not require any cutting, stretching, or interventions. They lavaged his lungs and sent off cultures to make sure he isn’t aspirating his food and drink. And they checked his airway to make sure no tissue had overgrown and had potential to cause a loss of airflow.
The surgeons were both very pleased with what they saw. Here are some of the main takeaways from the surgery:
-Levi’s cords are still paralyzed. This is now considered a permanent, lifelong condition and that changes our long term plans a bit. He will be followed surgically on an annual basis until he stops growing (around the age of 18) to make sure no trimming is needed and he is still safe. If his stridor continues to worsen or he starts snoring that will be a pretty good indication that we need to take him back in for more interventions.
-Levi’s trachea is still floppy (called tracheomalacia) but still considered safe. His lungs look stronger than last year. And he didn’t visually see signs of aspiration.
-Levi’s voice quality is still a marvel. I asked if he would maintain his pitch and inflections and he said that he should until puberty hits. But he also said that some boys have better voice quality after puberty, so that is exciting to hear.
They brought me back to the recovery unit (PACU) early so I could do a quick g-tube change while he was still under anesthesia. He was still intubated at this point and being bagged (manually breathing for him) but I have seen these things dozens of times so it didn’t phase me too much. However, when Levi finally woke up he went from no movement to swinging and kicking, dislodging the bag from the tube in his mouth. It was a pretty dramatic 10 seconds as we tried to get the remaining pieces out of his mouth. He ended up kicking me in the eye socket pretty hard and punched the nurse.
Truthfully this was the fastest surgery I have ever done with the boys and we were back on the road after just 2.5 hours. We waited until the next day to return home so I could catch up on a few hours of sleep that evening. The anxiety of the week kept me up most nights and when the adrenaline wears off after the surgery I always crash pretty hard.
I have to be really honest with you and share that this week has been one of the most emotionally exhausting ones I have been through in awhile. The anxiety in Levi leading up to surgery was the worst it has ever been. The anxiety in me leading up to surgery was the worst it has ever been. It affected me in physical ways.
But the scene from the operating room continues to play when I close my eyes at night. His frantic eyes watching me, trying to process why I was leaving him in this scary situation with strangers. And why I was doing it with a fake smile plastered on my face and confident words but uncertainty dancing in my own eyes.
Later that night I pulled Levi close to me and asked him if we could talk about when mommy had to leave him. He immediately burst into tears, sobbing as I tried to process that moment with him and explain why I had to leave him. Explaining the benefits of a procedure to a four year old is simply not possible. So I explained how hard that moment was for me too, and how I didn’t really want to leave him there but I had to. He cried until he fell asleep and as I laid in that bed with him I felt my heart getting so incredibly frustrated with God.
Yes, we can do hard things. But why God? Why do we keep getting called to the hard things? Why do I keep getting called to the hard things? When will the hard things stop? I have lived a lifetime of hard things and I am so, so weary.
And in that moment God gave me the gift of His eyes. I saw myself in Levi surrounded by strangers in that operating room. Wondering why this person that I trust so much keeps placing me into scary situations and seemingly stepping away. Wondering why He is expressing so much confidence as He watches me from afar. Much like a four year old, I have a hard time seeing beyond the discomfort of the now.
But there is progress, healing, and wonderful reports that can come from those operating rooms. Those operating room moments in our lives are the very places that testimonies get written, grow legs, and come to life.
God carries us to the mountaintops and God carries us to the valleys. He is never apart from our journey. But do we really trust Him? Because if we trust Him we have to believe that He is doing something magnificent within us each time we are called to the hard.
I pulled up a blog entry from 2018 when Levi had his rib graft placed. We were still unsure whether it was a success, which as you know we later found out was successful at avoiding the trach.
As I read it again this week I was convicted in so many ways by the Spirit. I thought tonight instead of an original devotional thought I would instead share this one with you….
March 11, 2018- Buckets of Water
This week I was reminded of the miracle God performed through Elijah on Mount Caramel from 1 Kings 18. The prophets of Baal and Elijah had a contest. They would each prepare a sacrifice and pray to their god(s). The god who would answer with fire on the sacrifice was the one true God.
The men who worshiped Baal went first. They prayed, chanted, cut themselves trying to get the attention of their false god. No fire came.
When it was Elijah’s turn he had the men pour four large jars of water on the sacrifice and the wood underneath it. Then he had them fill up the jars and do it a second time. Then he had them do it a third.
Here is what happened:
36 At the time of sacrifice, the prophet Elijah stepped forward and prayed: “Lord, the God of Abraham, Isaac and Israel, let it be knowntoday that you are God in Israel and that I am your servant and have done all these things at your command. 37 Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”
38 Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.
39 When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”
As I read this story I couldn’t help but marvel at the ways of God. He could have easily sent fire down to burn up the sacrifice right away. But He took a situation that- by itself- would have been miraculous and He made it even more magnificent.
Each bucket of water tossed on that bull made it more and more unlikely that the fire would consume it. Each bucket created more doubt in the eyes of the unbelievers. Each bucket gave them confidence that the miracle would never happen.
And it was after He drew the attention of a crowd of unbelieving, doubting men that He sent his power to do the unthinkable.
As I look at our life I can’t help but feel that these trials we are going through now are the buckets of water. We were drenched with Malachi’s untimely birth. We are sopping wet with his physical limitations and hurdles in life. Then more rounds of the buckets came with Levi’s birth. Each time we are doused with water our miracles seem less likely to ever take place.
But oh how I long for the day that God decides it is time for His power to be made known through the miracles He performs in my boys. And may He choose to do so in such a way that it brings the unbelieving to their knees in worship to Him.
I believe with all of my heart that Levi will verbally share with others the goodness of our God. And to see Satan trying to steal his voice affirms that in my heart even more.
Please continue to pray over our family as we process the disappointment that creeps in. We didn’t get our big miracle, but God has been so gracious to our family and given us so many other miracles along the way. Pray that we are able to cling to those moments as we try to press on past the disappointments. And pray for wisdom for me in dealing with parenting these amazing children. Being a mom is hard. Being a medical mom is a whole new level of hard. And this week I am feeling it in my bones.
The theme of the week here has been flexibility. Tuesday afternoon we received a phone call that one of the two surgeons we planned to meet with at Vanderbilt on Tuesday had been called into several trauma surgeries and they needed to re-schedule our appointments. That trip will now take place late August.
I had spent most of the week talking this trip up with Malachi, so having to break the news to him was hard. He was disappointed, but we worked through those emotions focusing on the excitement of getting to do that trip in just a few short weeks.
But add onto that disappointment the frequent chatter of preparing for Levi’s week long trip to Cincinnati. Bad timing for an already disappointed 9 year old and a anxiety ridden 4 year old that requires LOTS of conversations about his upcoming trip.
Levi and I were originally planning to leave for Cincinnati today but have slid our timeline a bit to drive straight from Tennessee to the first pre-op visit on Tuesday. We will meet with the pulmonologist that will be in the operating room on Friday, and usually at this appointment they check for vocal cord movement. He has to be awake for this portion to truly test movement without anesthesia, and it involves sending a camera down his nose while I bear hug him tightly. It is a miserable appointment, but one that just has to be done.
The other surgeons involved have waived their pre-op appointments and plan to just meet with us right before the operating room on surgery day. Which is wonderful news as getting Levi back into the hopsital after his miserable camera experience is always a challenge.
Surgery day is Friday. We always sign off for ”interventions as needed” as they never know what will need to be trimmed (suppraglottoplasty), dilated (balloon dilation), or expanded until they are in there. His procedure is called a microlaryngoscopy and bronchoscopy (ML&B) and doesn’t take very long to do.
After the procedure is finished I get called into the conference room twice- one time to speak with the pulmonologist (lung doc) and the other to speak with the ENT surgeon. The lung doctor will examine his lungs and trachea, testing the fluid and cleaning his lungs to see if there is any sign of aspiration of food, drinks, or saliva. The ENT surgeon will be looking at the anatomy above the trachea, examining the vocal cords and seeing how open his airway is. Sometimes Levi’s epiglottis grows up over the airway and she will do some trimming as needed.
As I have mentioned before, if his vocal cords are still paralyzed at this time, statistically they will never wake up and regain function.
Alright, so how am I feeling leading into this appointment? The answer is complicated.
I would be SHOCKED if they told me his cords were functioning. So no big breakdown of emotions if they tell me they are paralyzed for life. When Levi was a newborn we pursued treatment as though his cords would never wake up, doing several experimental procedures to try to find a trach free route. Had we not gone that route we would be doing some pretty massive surgeries right now, aggressively trying to get the trach out.
I legitimately hate surgeries. I recognize the need, I recognize the blessing that they are…but I still hate them. I hate handing off my children. I hate seeing them under anesthesia. I hate the wait leading up to the operating room. I hate seeing the date and the word ”surgery” on my calendar.
Between both boys I think we are at 45 surgeries? Each surgery carries a host of memories, emotions, and anxieties that a momma can’t easily forget. I will prep for the day with my usual routine…
-Waterproof mascara for the surprise emotions. The ones that gets me EVERY time is the walk from the operating room to the waiting room. I am typically pushing an empty stroller or wheelchair and it just feels so unnatural. Levi is usually crying out for me and I have to turn my back and walk away. Ugh.
-Total random side note: I always try to shower and clean up for surgery days; in the past they have taken a bad turn and we end up in the ICU for several days where showers are rare. We now prepare for the worst, but I don’t anticipate any surprises like these. I also try to dress like an adult rather than comfy clothing because we have noticed it affects the way the staff (nurses, anesthesiologists, surgeon) talks to you. Call me crazy but I fully believe this makes a difference.
-A dark colored shirt in case there is post op bleeding from the boys. The chances of me getting stuck in that shirt for several days is there and hiding the blood spots helps me cope. I also try to wear something with a Bible verse on it to remind me that I am a representative of Him, even on my hard days. I try to think about the others in the waiting room, as each of us are facing our own hard battles in that room, and wear something that might spark their faith.
-A book that I will pretend to read when he is in surgery even though we all know I won’t be able to focus. Having something to stare at in that waiting room is a must. In smaller hospitals they let you wait in a private room, but in large ones like these you are in a room with at least 100 other parents. My people watching nature torments me as I absorb the anxiety and emotions swirling in that room.
-A notebook to take notes during the surgeon talks after and list of questions for the surgeons. It is always a burst of information and if I don’t write it I don’t remember it. Plus my mind immediately drifts to the thought that he is in recovery and the sooner I finish these meetings the sooner they may call me back to be with him. I tend to accidentally forget important questions I mean to ask.
-Freshly cut fingernails so I can’t self mutilate my cuticles when my anxiety kicks in. And a nasty tasting chapstick so I don’t pick at my lips while I wait anxiously for them to call me back.
-A bottle of water for after surgery. I typically dehydrate myself so I don’t require the restroom while I wait. I don’t ever want to be out of the room when they call my name. That is legitimately one of my nightmares, and is fueled by mistakes I made early on in Malachi’s surgery days.
-My hospital backpack. It is large enough to hold 2-3 days worth of hospital supplies in case of a surprise overnight stay. I also pack another bag for the car with emergency supplies if we get admitted.
I have prepped some surgery day surprises for Levi to help distract him a bit. I also have a ”surgery day” shirt for him this year to try to help him with the anticipation of the day. He has been anxiously asking all week long, so I have told him ”when I put this shirt on you, you will know that it is surgery day.” His shirt says: I can do hard things. Which is the phrase we repeat over and over leading up to the day.
We have also added a Bible verse into the mix when he starts to get anxious thinking about the day.
Joshua 1:9 ”Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
In the days in between pre-op appointments and surgery day we will be finding some fun things to do and visiting with family in the Cincinnati area. My goal is for the fun memories to outweigh the bad ones, although I am afraid I am in a losing battle with that one.
Jake and Malachi will be holding down the fort here in Tennessee, and I have been hugging him extra tightly. Malachi and I have such a unique bond and being away from him feels so unnatural. This is the only time all year that he and I are apart.
I have been spending a lot of time in the Word this week, trying desperately to prepare myself for the week to come. As many of you know, Daniel 3:18 has become a “life motto” of sorts, talking about how God is able to deliver us from the fiery furnace, but if He chooses not to then He is still good.
This week I spent some time reading through that chapter again and my eyes focused on a new chunk of verses. The more I have read them this week the more I have adopted them as my prayer for the week.
Daniel 3:26-27 ”…Then Shadrach, Meshach, and Abednego came out of the midst of the fire. The satraps, the prefects, the governors and the king’s high officials gathered around and saw in regard to these men that the fire had no effect on the bodies of these men nor was the hair of their head singed, nor were their trousers damaged, nor had the smell of fire even come upon them.”
Time and time again our family has faced this fiery furnace, and each time God calls us to walk back into the flames. I choose to keep believing fully that our call into the furnace isn’t always meant for us, but rather it is often for the outsiders looking into our lives. Like King Nebuchadnezzar in Daniel 3, from afar he was able to see the presence of God with the men in the fire, and I pray that the same is said by onlookers in our lives.
But these last few times I have entered that furnace I can’t help but look down and find all of the lasting marks, the smell of the smoke lingering in my nostrils and coming back to mind each time I think about re-entering the flames and filling me with a sense of dread.
I have slowly, and unknowingly, made the time in the furnace all about me instead of remembering that God is telling a greater story of deliverance.
My prayer this week is that I can keep my eyes focused on Him. I am praying that both Levi and I can walk out of the furnace this week with the ability to focus on God and His goodness rather than the marks and memories of the flames. That not even the smell of fire would come upon us.
Would you join us in that prayer?
Please also join us in praying for safe and uneventful travels, and for protection of Jake and Malachi in Tennessee.
Thank you for always giving me an ear to listen to my ramblings each week. We appreciate our community of support so much more than I can relay.
What a wonderful, exhausting, and powerful week we just had! On Tuesday we loaded up our teenagers and took them to camp for the week. This is our tenth year doing camp with the youth, and we have gone from 17 campers to 50 (56 if you count my crew and some extra help)!
There is always an incredible amount of prep work required to pull this off every year, and we spend so much time in prayer leading up to camp over these young adults. When we actually get to camp we get to enjoy watching God do His thing, and being present for them as they grow in Christ.
Flashback to the first year I took both kids to camp…
Levi was on oxygen, feeds, and a pulse ox 24 hours a day and we didn’t have a portable oxygen concentrator so I had to haul dozens of oxygen tanks with us for the week in addition to the other supplies for both boys. I was solo that year, living in a hotel room for the week and on the final night we came back to the hotel at midnight to find a giant rat turd on the bed that was most definitely not there when we left for that day. All I could picture was a rat on Malachi in the middle of the night and him not being able to tell me or push it off, so I packed up allllll the tanks, equipment, boys, and checked into another hotel around 4am. That was a rough year.
Since that horrific experience, I have had some wonderful friends that feel led to take time off each year and come along to help me with the boys. We rent an AirBNB and travel back and forth each day, and the boys genuinely look forward to camp with the big kids each year. It is our summer vacation (as unconventional as it may be) and they love it.
God moved in some pretty amazing ways throughout the week and we left feeling so encouraged about the preparation God is doing with these teens to do some big things for the Kingdom of God. I want to gush right now, giving you examples, but I also feel I need to protect the confidentiality of our teens!
Camp days are like no other, most nights staying up with the teens until 2am. The real winners are the lovely friends that came and helped with the boys, tolerating my late nights with the teens and running nightly routines and meds with the boys at the rental.
We came home yesterday afternoon and we have been taking turns napping all day. I was supposed to leave with Malachi for Vanderbilt on Tuesday but we are going to slide that plan a bit and I will head out Wednesday morning, drive there just in time for his appointments, then spend Wednesday evening doing a few fun things to jazz up his ”trip with mom”. We will stay the night in a hotel on Wednesday because I am not confident I have the mental clarity right now to drive back the same day; that would be nearly 7 hours of driving in one day on limited sleep and lots of stops along the way for Malachi’s needs.
Malachi will be getting x-rays and we will be talking with the spinal surgeon about his new degree of scoliosis and if we need to intervene (surgery) anytime soon. Which we are praying against! And then we will meet with his orthopedic surgeon to talk about his foot positioning and if more tendon release surgeries are needed. His cerebral palsy manifests in his ankles by pulling the tendons extremely tight- tight enough to bring his foot up and out.
Malachi wears AFO braces to help keep them in position but those can only help maintain positioning. Sometimes surgical intervention is needed. Malachi has already had several corrective surgeries on his feet and ankles, several months of serial castings, and pins placed through his foot bones to reform them. But his brain continues to send mixed signals creating more damage.
I am not expecting to hear any new or shocking information at these appointments. There is a pretty good chance they will mention surgery for the feet, and that isn’t an earth shattering thing. If the spinal surgeon mentions surgery being needed, which I don’t expect based on last year’s degree of curvature, I will most definitely have trouble accepting that (meaning I will cry my eyes out in his office). Spine surgeries are rough on medically complex children.
Malachi and I will come home Thursday. And a week from today I will be packing up Levi and he and I will head to Cincinnati. His first pre-op is next Monday and his surgery will be Friday morning. We don’t know what they will have to do in surgery until they get in there and look at his airway, but they usually keep it an outpatient surgery and have us come back in a few months if a larger, inpatient surgery is needed.
Let the road trips begin! We will divide and conquer for the rest of the summer trips, Jake staying home with one and me traveling with the other. I am not looking forward to any of these trips, but also recognize that they have to be done. So we just repeat ”We can do hard things” over and over again until we start to believe it.
Last night I sat down to start planning the details of Nashville with Malachi. I try to find something extra special to do with him each year, and as I scrolled through dozens of options every single one of them was not feasible for me to do with him. I was left with the same few things we always do, which I am sure he wouldn’t mind. But my momma heart wants so badly to give him new, age appropriate experiences. The older he gets, the more limited we are as I can’t carry him safely like I used to.
As I scrolled through all of these amazing activities I could feel emotions welling up inside of me, eventually spilling out of my eyes as I mourned for Malachi. He is such a kind-hearted, sweet sweet boy. He has the mind of a 9 year old and is so aware when he isn’t able to do the fun things other children are doing. I wish our world had so many more options that included all abilities.
If you are a Nashville fan and can think of any ideas we may be missing send me a message! Our usuals are: Rainforest Cafe, the zoo, Build a Bear, movies, arcade (Dave & Busters or Chuck-e-cheese).
Malachi is SO EXCITED about this trip, laughing uncontrollably every time we talk about it. And Levi is crying his eyes out every time we talk about it. The jealousy is thick in our home right now.
The Lord led me to a verse last week that has really been playing in my mind.
Isaiah 29:19 ”The afflicted also will increase their gladness in the Lord…”
As I have read over these words and absorbed them this week they have become a new prayer. Affliction is a very real and present thing in our family, and it has interwoven itself into the fabric of our testimony. We have prayed against afflictions, yet they still remain.
God has chosen our family to bear the label of ”affliction”. It is one that he could easily remove in an instant, so the fact that it remains is proof enough that it is meant to be a major part of our story.
So while God continues to author each chapter in that story, my prayer is that we will be able to increase our gladness in the Lord while we wait patiently for Him to work.
Yes, we bear the label of affliction. But there are so many other beautiful post it notes on our board that would have never been written without affliction also being present.
Please be in prayer for our family over the next two weeks. Pray for good reports, safe travels, and memorable moments of joy!
I have been slacking a bit in my blog routine lately; when I have sat down the last two weeks to write I have felt God’s leading to close the screen and try again the next morning. He knows me better than I know myself so I have been trying to be obedient and assume God’s timing has a purpose.
Levi is growing like a weed and moving fast into big brother’s hand me downs. There are still ”firsts” for us as parents, even though Levi is our second child. We never had a reason to really buy shoes for Malachi so we don’t have hand me downs in that category. I had to take Levi for some bigger shoes this week and his wide-eyed wonderment at all of the options was a really precious parenting moment. Levi wears braces inside of his shoes so we have to be pretty picky to make sure his braces will also fit, but he was so excited about his fancy new shoes!
Our summer has continued to go so incredibly well with lots of family time. We have been doing lots of planned and impromptu play dates with friends here at the house, and Malachi and Levi have spent hours this week in the pool. Malachi keeps beating his record (at his request) and will often spend over 2.5 hours swimming. It is hands down his favorite activity right now.
The FDA recently put out a statement regarding neck rings like the one he uses to swim due to some children somehow slipping through. Malachi is always supervised when he uses his so for now we still feel comfortable with continuing.
It is very hard to have a social life with medically complex children, and it is something I am more than happy to give up in this season that we are in. However, God has been very gracious to us in many ways, bringing such kind and loving people into our world.
At a neurosurgery appointment 5 years ago we ran into another medically complex family and started a conversation. They have two amazing boys, and one of them has many of the same diagnoses as Malachi. We still get together several times a year and text often, and this week they came to our home for a play date.
There is something refreshing about being around other medical mommas. It is inspiring in a way to be able to watch the unique-to-them but similar to us routines and strategies that we use to help provide normalcy for our children. To see others doing life well is always an encouragement to me and challenges me to keep pressing on.
Here is a photo of Malachi and Thatcher from 2016
And one of them together this week!
While we have been thoroughly enjoying summer, this week the ominous wave hit me that we are about to enter our season of medical traveling. Lots of psychological warfare is about to begin as I manage a lot of PTSD from medical facilities and specialists. Anticipatory dread keeps creeping in, keeping me from being as present as I would like to be. I have to keep refocusing and trying hard to enjoy the moment.
Tomorrow is a big day as we head to youth camp with our youth group. We will have 50 at camp this year, and then 6 total at a house off-site with me. This is the largest group we have ever taken to camp and the devil has most definitely been trying to slow us down. Just this weekend two of the three buses we were using to transport kids broke down and we had to scramble to find replacements.
Whenever the devil starts his tricks I can only assume it is because something really great is about to happen at camp that will impact the Kingdom of God in a mighty way. So as stressful as things have been I am really excited to watch Him work.
This is our family vacation each year, and something both of the boys have been giddy about! We require a kitchen, sink, and refrigerator for medical needs when we travel so we rent a house close to camp. Jake stays on site with the teens and a few other chaperones and I travel back and forth each day with the kids and some great friends that come to help with the boys.
When we return next week I will have a few days for laundry and unpacking, then Malachi and I will head to Nashville to meet with his orthopedic and spine surgeons. We will do x-rays and examine his foot positioning to see if it is time for another surgery. Then the next week I will head to Cincinnati with Levi for his week of appointments and surgery.
Malachi is very aware that Levi gets a whole week in Ohio with just mom, so we typically try to give him a special trip with mom of his very own. I will book a hotel room for he and I and we will find something fun to do around the hospital. Last year we did the Rainforest Cafe and Build a Bear.
I was reading through James 4 this week and came across this verse:
“Submit therefore to God. Resist the devil and he will flee from you.”
There are so many truths in this verse, but the one that immediately hit my heart was the very first word: submit.
So many times we try to resist the devil through our own power. But it isn’t our power that overcomes…it is the power of God through us when we submit to Him.
This week as I have wrestled with the doom and gloom that is to come over the next month I have found myself trying to fight those thoughts on my own. And it truthfully just isn’t possible. I can distract myself from them, but the power to remove them from my heart and mind is beyond my capabilities.
So this week I am working on submitting to God. Acknowledging to Him verbally and from deep within my soul that I am weak and apart from Him I can do nothing (John 15:5). I am asking that He replaces my anticipatory grief with His peace.
And I am trusting that He will do just that!
Please be in prayer for our family as we enter a week of focused ministry. And please be in prayer for the weeks of medical traveling that will follow.
This is one of those weeks where I stare at the screen, not quite sure where to start. Sometimes I have to re-focus myself on the purpose of the blog. I have always wanted it to be a glimpse into the lives of a medically complex family so when we have ”normal” weeks I find myself scratching my head on what to share with you.
I could share with you our normal moments like soccer practices, play dates with friends, family game nights. We have had a full and busy week with lots of laughter.
But when I allow my mind to search for all the medical moments, we certainly had several this week.
Malachi’s oxygen levels have been up and down as he is dealing with a little extra drainage. He can go from an oxygen saturation of 96 (with 100 being perfect) down to 85 due to some junk in his throat. We are using the cough assist machine frequently on him and while it does help tremendously he still hates it with a passion. And I don’t blame him one bit. It is an extremely invasive machine.
We added a piece of furniture to the house last week and it has made life a little bit easier. I am still working on finding good equipment storage options for the top tray. We secured a 10 foot power strip on the cart so all of the machines are plugged in and we can wheel it anywhere in the living room. It has been such a blessing already. Several of his other machines don’t fit on the cart but these are the most frequently used ones right now.
One of the things you may not know about medically complex families is the insane amounts of medical supplies we stock each month. We have several cabinets that are each designated for different items and our medicine cabinet looks like a pharmacy. Right now we are using over a hundred syringes a week between the two boys.
This week Levi and I were talking about our upcoming trip to Ohio and all of the fun things we were going to get to do. We try to mask our medical trips each year with focusing on the fun. I don’t mention surgery or the many doctor appointments until the day of each so he won’t have the opportunity to dwell on them and develop anticipatory fear.
As I was watching him I watched his little face change and he said ”I don’t want to go to Ohio. I don’t want to see great grandma. I don’t want to stay at grandpa’s house.” I asked him why he didn’t want to go and he burst into tears. Through his sobbing he said ”Me don’t want to have surgery” over and over again.
For years we have been able to delay his awareness for surgery, but this year he pieced it together all by himself. He sobbed and cried, which increased his effort with breathing and caused him to vomit. As much as I tried to calm him down he just couldn’t calm down.
This is always a difficult dilemma for me. I never want to lie to Levi, especially about hard things in life. So we embraced the hard together and talked about why we have to do hard things. He cried himself to sleep and my mommy heart was so broken for him.
It continues to be a topic every single day, almost as if he thinks he can negotiate his way out of surgery. But the truth is, I am dreading it as well. This is the year that they will formally determine if Levi’s vocal cords are permanently paralyzed. I know from clinical signs that they aren’t moving, but having medical professionals confirm this still carried a level of sadness.
Jake and I took our youth group on a hike up the side of a mountain down the road from us for a time of Bible study and worship. He and I used to do this hike often in college and it was one of our favorite places to go, so hiking back up there with the teens was such a special gift. In fact, the last time we made that hike together I was pregnant with Malachi!
When I think back to those early carefree days with Jake they feel like a lifetime ago. A decade ago we were hiking through Montana and exploring national parks. Our faces (and bellies haha) were thinner and our eyes were brighter but the depth of our faith has changed monumentally.
Sometimes I look at photos like these and find it hard to believe we once lived a life that was THAT carefree. But those years were such a gift from God in our relationship. I have to often fight the temptation to play the comparison game with our former selves as it has the ability to breed discontentment.
I think anyone reading our blog would easily decipher that we are very much pro-life, believing that God is the author of all life. Malachi’s life verse before we ever knew of the complications that were to come was Jeremiah 1:5 ”Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”
When we are in our hometown Malachi is loved, accepted, and valued by so many. I am aware that not everyone shares those same emotions towards children with special needs, but every now and then I forget. This was one of those weeks that I was reminded of the harshness that still exists towards children like mine.
I read a post from a NICU nurse on Facebook and immediately after I read it I wanted to vomit. The sadness that welled up inside my heart was overwhelming as it reminded me that my definition of worth is so very different than the worlds.
The post included a few phrases that I would like to share with you:
”if you ask anyone who works with critically ill infants or children, you’ll learn that some lives are simply not worth living…I’m talking about kids who will never walk or talk or play or smile or feed themselves or breathe on their own.”
”The ones that will endure painful procedures and infections their entire lives with no hope for recovery. There are legitimate reasons to end a pregnancy and spare a child from a lifetime of pain and suffering. Ironically, it can sometimes be the most loving and humane choice for someone.”
I have seen very traumatic situations in our hopsital stays with the boys. I know that suffering exists. And if my very limited view of these situations represents even a fraction of what healthcare professionals see then I can only imagine the heartache they often experience.
But we have to be very careful as a society to not categorize quality of life. In the last week I have very quickly watched Americans use children like my Malachi to rationalize ending a life. And as a mom of a very unique, very smart, very amazing child with complexities I ask that you don’t use my child’s condition or life as evidence for a mercy killing.
Malachi has changed me profoundly, and in turn changed the world I interact with. His life has so much value and so much worth. The fact that I even feel in my heart a compulsion to type that sentence is a tragedy.
I can provide an argument for the value in Malachi’s life. I can provide detail after detail as I try to convince you that there is so much world-changing that happens even within suffering. But the truth of the matter is that I can never convince someone to fall in love with God. To be so would be a manufactured faith that wouldn’t take root.
Only God can change hearts and transform minds.
That sentence bears repeating again. Only God can change hearts and transform minds.
The Bible tells us in 2 Corinthians 5:20-21 ”Therefore, we are ambassadors for Christ, as though God were making an appeal through us; we beg you on behalf of Christ, be reconciled to God. He made Him who knew no sin to be sin on our behalf, so that we might become the righteousness of God in Him.
We are ambassadors, representatives of Him on this earth. Too often we spend our efforts trying to change hearts instead of introducing others to the One who can change their hearts.
So my prayer this week is that God continues to use Malachi as His ambassador, using his suffering and his joy to draw others into a faith walk of their own. And my prayer is that God gives us the words, the posture, and the heart to be representatives of Him on this earth.
Please be in prayer this week for our upcoming youth camp! We have over 50 going this year, and the (wonderful) spiritual weight that Jake and I carry for each of them is one of the most rewarding yoke’s we have the opportunity to carry.
This week was scorching hot here in east Tennessee and Malachi does not tolerate the heat well, especially with heat indexes above 105. The best way to describe it is that he ”melts”, unable to engage any parts of his body. If he gets too uncomfortable he starts seizing so we typically try to keep him as cool as possible.
Horse therapy on Monday was borderline too warm but we thought we would give it a shot. It was pony painting day and Malachi melted but was able to use his eyes to communicate by looking at the therapist when she got to the color he wanted and looking away when she offered ones he did not want.
Levi also painted during his session and thought it was great fun! Levi has some sensory issues that were challenged by the session, particularly when his clothing got wet while washing the horse. He goes into a panic mode and can’t focus on anything else.
It brings me so much joy to see how each of them have changed in the last year. Levi was barely able to chew foods, and was still unable to swallow most of them. He would spit them out in a napkin after chewing them up. He was completely g-tube dependent. If I sat down and listed all the things he eats in a single day now you wouldn’t believe it. Just this week he literally jumped up and down when I told him I bought spinach dip for him, and he then ate it by the spoonful. I couldn’t watch haha. I love spinach dip but seeing it being shoveled into his mouth was a bit much.
And Malachi’s personality continues to grow with him. He is getting older and acting so much like the 9 year old that he is. It has been a good parenting challenge to try to find ways to grow our routines with him. This week we started reading a chapter book each night after our Bible story and he has been hanging onto every word. In fact, he got so immersed into one scene that my over-animated reading of one line set him into a pretty big seizure. I am learning to watch his engagement closely so I don’t spark one of those again.
Jake and I finally had a chance to celebrate our anniversary and went to Chattanooga for lunch and a trip to Dave and Busters arcade. I had never been there before but Jake and I’s courtship was centered around some friendly competition so it seemed like a fitting place for a few games of ski ball. The boys joined us of course, so I tried to prep them a bit for the experience but failed. Both of them were extremely overwhelmed when we walked in with all the lights and sounds. Levi asked if we could leave and Malachi just shut his eyes tightly and shut down.
We almost turned around and walked straight back out but we decided to play just a quick game of ski ball since we had already unloaded the crew (a task with the wheelchair). I watched Malachi very closely to make sure we weren’t inducing any seizures with the lights but after a few minutes his eyes were wide with excitement. Levi also started to loosen up a bit after he got the chance to play some ski ball.
They had several ride on games so we let them take turns sitting on them and pretending to play. They rode motorcycles, blasted dinosaurs before they ate us, and threw basketballs.
We headed home and later that evening Levi said ”Mom, I really liked the game place.” I asked him if he would want to ever go back and before Levi could answer Malachi nearly fell out his chair trying to sign YES YES YES. I guess a repeat trip is in our future.
It was haircut week, and the boys were way overdue. I couldn’t help but giggle at the before and after photos.
Tonight we took Jake for some Father’s Day ice cream. We each got a different flavor and let Malachi taste all of them and vote for his favorite. He loved the game and declared strawberry as the winner, much to our surprise. He is a chocolate loving boy. His smile melts my heart.
This week I ended up dealing with some pretty big surprise emotions.
Early on in our journey with Malachi our circles crossed with another local family with an adult son with medical complexities. We have watched this family very closely over the last 9 years, and even got some construction advice from the parents when we were making plans to build our home.
Tripp was 29 years old and an amazing young man. He loved his momma, his girlfriend, and his church. And he loves Jesus. Tripp could communicate through technological devices and it was through his life that we were encouraged to try to help Malachi find his voice.
Over the last few weeks Tripp’s health declined and on Tuesday he walked through those heavenly gates and ran into the arms of Jesus.
The transition between Tripp’s decline and his passing affected Jake and I in a profound way. I was hit with waves of anticipatory grief, feeling the situation on a very relatable and personal level for his parents. Understanding the pull between heaven and earth, desperately wanting to live life on earth with your child but also desperately wanting them to experience the freedom heaven holds.
I have shared with you before that I don’t like unknowns. I will skip to the end of a book and read the final chapter so I can enjoy it’s pages knowing how it will end. The inability to skip to the final chapter is something I really struggle with.
In Colossians 1:9-14 we read:
For this reason, since the day we heard about you, we have not stopped praying for you. We continually ask God to fill you with the knowledge of his will through all the wisdom and understanding that the Spirit gives, so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.
There are so many important truths that jumped off the page at me as I read these words this week. The first truth is the reminder to me that we aren’t capable of understanding the ways of God. We are only privy to the pieces that the Spirit of God reveals to us along the journey. We waste so much effort trying to make sense of things that God doesn’t intend to reveal to us quite yet.
The second truth is the reminder that we are simply called to live a life worthy of the Lord and please Him in every way. God’s expectations of us are pretty simple if you really think about it. The things it continues to list, like bearing fruit, growing in the knowledge of God, being strengthened…these are all things that come naturally when we focus on living a life that pleases God. They are byproducts of a God centered life.
I love the words in this verse and how purposeful they are. Particularly the verse: being strengthened with all power according to his glorious might so that you may have great endurance and patience.
There is such a huge truth hidden in this verse as it reminds us that walking a life aimed at pleasing God will absolutely create weariness within us. This weariness isn’t a sign of weakness. Walking a life of obedience to Christ requires endurance and patience, and often we have to take time to rest in Him.
When I look at Malachi, and when I think about the life of Tripp, I can’t help but see how well they live out the words in this verse: endurance and patience. And knowing that God continues to strengthen as we develop those verbs is such a gift from the Father.
The final truth I can’t help but focus on in these verses is: For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves.
Tripp has been rescued and brought into the kingdom of the Son. And God knows the date and time of Malachi’s rescue, and He already knows the date of mine.
When we re-define death as a rescue mission you can’t help but see the love of the Father in even those dark moments.
God asks that as we wait on our rescue that we continue to cultivate patience and endurance, living a life of bearing fruit and growing in knowledge of God. And Tripp did just that, and did so in a magnificent way.
As we transition into a summer schedule Jake and I go back to the drawing board each year and re-assign tasks and caregiver roles. We are slowly finding the summer groove. Jake goes to bed early and then takes whichever kid wakes up first. I stay up until everyone is asleep but get to hand off the kids when they wake in the morning so I can grab a few extra hours of sleep.
Malachi’s brain has locked into a new bedtime of 3:45-4:00am. I know this is hard to understand, but as hard as I try I cannot change what his brain locks in. I can take him back to the bed at 9pm but he will still continue to stay awake until he hits his established time. We have tried changing routines, changing feeding schedules, and all the tricks but he still cycles through these timelines every few weeks. So we simply enter his world and try to adjust accordingly.
In the same way he locks into specific times, he also locks into specific routines. Right now he is having a big seizure every night 15-20 minutes after I lay him down. So I lay him down then wait impatiently for it to hit so I can intervene. This nighttime seizure is an aggressive one and he contorts his face directly into his pillow, cutting off his air supply completely. This bedtime seizure is lasting about 45 seconds then he is settled for the night.
Overall, we have actually been able to get decent control over Malachi’s seizures with him having 3-4 a day. And he has had a better week with oxygen levels and comfort. He has been swimming like a fish with friends and he has taught himself all kinds of new tricks, which he is extremely proud of. I was able to grab a video to share some of them with you!
Malachi is such a cool kid. His personality and sense of humor is incredible. I didn’t take many pictures this week but I thought it would be fun to throw a few flashback photos of Malachi on here from his “newborn” photo shoot after graduating from our 112 day stay in the NICU. He was just over 6 pounds, had a broken femur, and was about to start a casting process to fix his little legs and feet. But I remember taking these photos and feeling overwhelmed by the emotion of feeling like a real mom doing real mom things.
Levi is changing every day, growing from a toddler to a long legged little boy. I took a quick video of him sharing his Bible verse from vacation Bible school.
This photo from a few years ago popped up and it made me smile, seeing that sass in those eyebrows even as a baby!
With Jake home I am able to tackle tasks that I typically have to put off, like insurance paperwork and phone calls. Not to mention the formula shortage issue which prevented our shipment from arriving. Thankfully I have some extra cans to get us by but the anxiety this issue continues to create is palpable.
I spent hours on the phone this week coordinating appointments and ironing out all of our medical travel. July is going to rock our world a bit with a week at youth camp, a Vanderbilt trip with Malachi the week after, and a Cincinnati surgery week with Levi the week after that. We will have just a week to breathe after all of our medical trips until Jake returns back to school.
Needless to say we are treasuring our June and trying to squeeze every last ounce of relaxation out of each day.
Jake and I celebrated our 14th wedding anniversary this week. We laughed about how life before kids feels like a movie we watched once that we can vaguely remember. We didn’t really get a chance to celebrate due to Jake having a cold but we will likely go out this week to do something fun as a family.
I always aim for transparency on here, so today will be no exception. I don’t want to ever mislead you or present a picture of our lives that is an inaccurate one…the devil loves to use the comparison game to plants seeds in our hearts and minds. I never want the snapshots of our life we provide to you on the blog to season the way in which you view your life, especially if you are another caregiver parent.
Marriage is work. It is hard work for every couple, and has added challenges for families with disabilities. I have seen so many pyramid charts of “how we are to prioritize the Christian household”. Many of them start with God at the top, move down to spouse, then to children, occupation, and ministry. In our longing for checklists and flow charts Christian couples cling to these visual aids. But we have to remember that God will plant us in seasons of life that don’t follow charts. It is in these seasons that we have to lean heavily on His guidance, His Word, and walk in faith.
The Bible talks often and in detail about marriage (Ephesians 5, 1 Peter 3, and many more). It is clearly an important enough topic that it is extensively covered in God’s Word and I want to encourage you to read through these scriptures and allow God to speak to you through them.
But how do to maintain a marriage when it is not always feasible to prioritize one another? The life or death needs of our children tend to rule our home. Jake and I haven’t been able to sleep in the same bed for at least 3 years. Malachi’s nighttime seizures require intervention and if I can’t get my hands on him quickly he will absolutely suffocate. Levi’s feeding pump also runs continuously at night and with his constant movement while he sleeps I am often untangling and adjusting his machine and tubes throughout the night.
If I had to pick one word for how we are making our marriage work right now it would have to be ”intentional”. Just like a relationship with God, I have to be intentional in my relationship with Jake.
I will admit that there this has been a hard reality to navigate. But over the years as we watched the complexities win out in our home we have had to spend time talking to God about His expectations of us as a married couple. Jake and I are like minded in feeling like we are being called by God to raise these boys. God has given us a very specific task to do, and He is equipping us to continue to do that with a heart of contentment.
And in this role we are given the opportunity to serve and honor God side by side by caring for “the least of these” (Matthew 25:40). Watching the faithfulness of God in this life has been such a gift in our relationship.
But in the last few years I have really been able to settle on a clear and concise plan as I navigate marriage and parenting and I would love to share that with you as I truly believe it can transform any marriage. Matthew 22:34-40 says:
Hearing that Jesus had silenced the Sadducees, the Pharisees got together. One of them, an expert in the law, tested him with this question: “Teacher, which is the greatest commandment in the Law?”
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself.’
All the Law and the Prophets hang on these two commandments.”
We can organize the pyramids. We can read the books. We can go to the workshops. But in the end, the Bible is so incredibly clear what our priorities should be. Loving God with every ounce of your being. And then loving your neighbor as yourself.
I believe that if we are intentional in keeping our eyes focused on these two things then so many relationships, roles, parenting, and circumstances in our lives have the opportunity to be transformed in Christ.
I have found that the driest seasons in our marriage have been when one of us has drifted a few steps away from the Vine.
Please continue to pray over our marriage and the things we have yet to face as parents. Please pray against the specific ways the devil gets his foot in between us….bitterness, finances, times of uneven sacrifice, future opportunities for blame.
I am reminded of the verse 1 Peter 5:8-9 ”Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.”
And thank you for continuing to listen to me ramble each week. It is good for my soul.