As predicted, Malachi’s antibiotics required us to stay close to home this week. We spent a lot of our time enjoying the new fall weather and taking some flights on the new airplane.
I am not quite sure how it is possible for a special needs momma with the level of complexities in our home to ever hold a job/career. The amount of daily responsibilities and routines to keep them in good health is getting more intricate each year and changes so often. In just three hours Malachi required 8 diaper changes! Each time I am required to glove up and the process to change it takes about eight minutes from start to finish with these meds on board.
The bigger Malachi gets the more my body is feeling the frequent handling that has to be done. It has sparked my brain into planner mode, trying to figure out the best next step for equipment to help care for Malachi.
Malachi and I are very thankful that tomorrow is our final day on these antibiotics!
To add to the chaos, Levi started running a fever midweek that ran for about 3 days. He finished it up in time for Malachi’s fever to start. Malachi’s is still low grade but thankfully there are no other symptoms for either boy. When Malachi gets sick his seizures either amp up in frequency or lessen, and thankfully he hasn’t been having many large seizures!
Levi has been in full play mode with Malachi and has been extra inclusive this week. Their interactions have been unprompted and just so sweet to watch. We have been playing post office a lot and here Levi was trying to help Malachi write a letter.
We also had some visitors stop by this early this morning around 2:30am! I was still awake with Malachi so I was able to watch them through the kitchen window and get a close up. These are actually the first bears to stop by the front porch since we brought home the dogs last year. It was a big momma and two cubs.
I always try to be transparent on the blog, and I have to admit that I am exhausted. There are weeks that the lack of sleep alone leads to exhaustion, but then there are weeks like this one that are a combination exhaustion of lack of sleep and the mental energy each day requires.
This week I read a verse in 1 Corinthians 15:58 and the Holy Spirit prompted me to dwell on it’s words a little more than normal.
”Therefore, my beloved brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord.”
Toil. What a perfect word for this week. And it is very easy for me to sit here and whine about that toil and all the ways it affected me. See above paragraphs haha.
But when we are working within our calling, and we are working in the strength of the Lord instead of our own, our toil is never in vain. God can use the meager rations of our efforts and pure motives and fulfill such a great work through them.
When I allow my mind to entertain the idea that my toil is done in vain then I make this life about me and my wants instead of being Christ to these boys. It is natural to grow weary in doing good when we expect rewards and affirmations from our actions.
This week my mind is focusing on those commands from the verse: be steadfast, immovable, always abounding in the work of the Lord.
Please pray against fevers and new sickness in our home. Malachi has his Vanderbilt appointments in about two weeks and it is almost comical how many times we have attempted to reschedule these due to sickness.
Early Monday morning the boys and I headed to the children’s hospital for their routine appointments with the pulmonologist. I checked Malachi’s oxygen before we loaded up for the day and he was hanging around 94, relatively close to his baseline so I was certain we wouldn’t cause chaos like we have the last two appointments. Just in case I loaded in the portable oxygen concentrator, pulse ox, and cough assist machine.
We started with Levi and shared his updates from Cincinnati. Levi also has a pulmonologist and ENT surgeon team in Ohio but this doc is our local point of contact. Then we moved on to Malachi. I explained that he had been struggling with sickness for the last several weeks and when he listened to Malachi’s lungs he was a bit concerned that some pneumonia was brewing. He sent us for chest x-rays which came back hazy but not indicative of pneumonia.
He started Malachi on a 14 day course on antibiotics to help clear out his lungs a bit. Malachi on non-maintenance antibiotics is a digestive nightmare. I could go into details here, but I think I will just let you use your imagination. While we finish up these antibiotics we will be staying close to home so I can have a place to change him frequently and potentially do wardrobe changes for both of us when needed….which is very often. He could definitely use a lot of prayers for his discomfort right now.
But those smiles are back this week, and I am so thankful for them.
Now back to hospital day.
After Malachi’s chest x-ray we had been at the hopsital for several unexpected hours and missed our next round of appointments 35 minutes away. I rescheduled those to Wednesday and figured since we were there anyway I might as well knock out Levi’s blood re-draw for the neurologist. His sodium levels have been low and he called a few weeks ago asking us to get new labs done when we were at the hopsital next.
Getting blood from Levi is always a challenge with his medical trauma but this time was absolute chaos. We had to wait in the waiting room of the lab for a bit and his little mind began to escalate; pretty soon he was in full fledged panic mode. I considered leaving but then I felt like I was reinforcing that if he cried hard enough he could leave. So we charged ahead and finally they took us back for the draw. She wasn’t able to find a good vein and asked me to have him lay down on the table. The insecurity of laying down instead of sitting up put him into a frenzy and by the time she successfully entered a vein he was crying so hard he burst it. We still didn’t have enough blood to run so she poked again on the other arm and again his emotions burst that one.
At this point I told her that we were going to stop for the day and asked her to spin what she did get. And unfortunately we found out later in the week it wasn’t enough, meaning he will have to go back and do it again. This is one of the challenges of medically complex kids. I can’t stand having my blood drawn, so I can definitely relate to his emotions. But there is no other way to do it.
By the time we left there I was completely drained and discouraged. The mental load of packing up for an appointment day- packing meds, formulas, machines, and supplies- is a lot. Then the emotional load and physical load take it to another level. When unexpected happens on those days it challenges my control freak nature and I shut down. We stopped by Chick-Fil-A as a reward for doing hard things and then went home to decompress.
Like I mentioned before, we spent the rest of the week staying close to home base and trying to navigate through antibiotic Malachi. The boys were approved for a local grant and I was able to purchase a playground helicopter for them to play together with. It has been such a sweet toy for them to share and use their imaginations with.
This plane has spots for 7 kids and holds 700 pounds. The wings on the front and back serve as teeter totters so the kids riding in the center of the plane get rocked back and forth. But Levi fully believes that Malachi is flying the plane. At one point he even said “Malachi, I need you to pull over so I can get out!” And then proceeded to get frustrated that Malachi wasn’t pulling over.
We made the most of our time at home, cleaning out closets and trying (and failing) to organize medical supplies. Levi is getting taller so he got to shop in the hand me down bins and find some big boy clothes. It is so much fun for me to see him dressed in Malachi’s old clothes. I don’t really know why.
And Malachi has been such a good sport for Levi’s imaginative play.
Our youth group has been busy lately with all kinds of projects and outings. Last Sunday we partnered with a prison ministry called Kairos that does Bible studies with the prisoners. They also take them chocolate chip cookies and our church signed up to make 150 dozen! We tackled it with the teens and some adults from the church and we were able to knock out 1,764 (147 dozen). Malachi and Levi genuinely love spending time with the “big kids” (as we call them).
This week we took the youth group to the local food bank to pack bags. And as the day approached I kept having these vivid memories of one specific day at the food bank several years ago. I was pregnant with our 2nd child but we hadn’t yet told anyone. I remember cautiously delegating, worrying that filling bags would overexert me and I would lose the baby.
The fear that gripped me through my pregnancies was so entangling.
A few weeks after the food bank day we lost the baby. Processing this loss after already dealing with so much loss of normal with Malachi was devastating. We had prayed so fervently for the “right time” to try for that child and had felt God prompting us to grow our family.
Matthew 14 tells the story about Peter walking on water. Jesus had just fed the 5,000 through a miracle and had sent the disciples on a boat to cross the sea while he spent time alone in prayer. When He finished praying He walked across the water and was spotted by the terrified disciples as they tried to weather a storm.
28 Peter responded and said to Him, “Lord, if it is You, command me to come to You on the water.” 29 And He said, “Come!” And Peter got out of the boat and walked on the water, and came toward Jesus.30 But seeing the wind, he became frightened, and when he began to sink, he cried out, saying, “Lord, save me!” 31 Immediately Jesus reached out with His hand and took hold of him, and *said to him, “You of little faith, why did you doubt?
There have been so many moments in my life where Jesus is standing in a storm and inviting me to join Him in it. The confidence that I feel as I take that step off the boat and into the water with my Lord is invigorating and faith building.
But inevitably the storms I have been called to enter begin to intimidate me and distract me from Christ- the very reason I stepped out of the boat. My narcissistic self goes into survival mode, trying to do the work within my calling without the help of Christ. And then I begin to sink.
Every. Single. Time.
Oh how embarrassingly easy it is to forget our need for a Savior.
But even though He has watched me fearfully fail, He continues to challenge me to obey His callings and walk with Him in the storms. We serve a God that doesn’t give up on us, even when He has to reach down and pull us out of danger time and time again.
I have experienced the feeling of sinking more times than I can count. I have felt that water come up over my bottom lip, threatening to take me under. I have allowed the storms in my path to discourage me from the miraculous moments He is also completing in my life. My prayer is that my mind can focus on those special moments walking on water in humility with the Lord and less on my moments of nearly drowning.
I am so thankful for grace upon grace (John 1:14-16). And I pray for the courage to continue to step out of the boat and enter the waves with God when He says “Come”.
Oh boy, be ready for some pretty fun adventure updates. And lots of pictures with this blog entry!
By midweek Malachi was able to come off of all machines and was breathing relatively normally. He is hanging at a very safe range for his oxygen saturations and he finally has his energy back. We are scheduled to see his pulmonologist in the morning for a routine check up for both boys so I really need his levels to continue to maintain well. The last two pulmonologist appointments I have taken Malachi to have been very close to becoming a direct hopsital admission because of low oxygen numbers. I tried to reschedule this one for a time when he can be 100% but the next available appointment was January so we stuck with it. Say some prayers for us tomorrow morning!
And don’t tell Levi, but he has to get another blood draw tomorrow due to some low sodium readings on his last one. His seizure meds seem to be the culprit so we may have to tweak those a bit.
This week I rented the skating rink for our youth group and their families. The workers there made it such an inclusive experience for Malachi, letting him on the rink and letting him participate in all of the games. Levi gave the skates a try as well, but that was a short lived experience and he spent the rest of the time chasing his buddy.
Levi is a social butterfly and these last few weeks at home have been hard for him. This week he made up for lost time with lots of play dates, swimming, and friend time.
Malachi has been homeschooling this year and I am having Levi sit in the lessons as well. He has been such a sweet helped to his older brother.
Malachi was supposed to go on a mommy/son trip with me in early July, pairing it with some medical appointments in Nashville. The appointments (and trip) were moved by the surgeons to August but then Malachi got too sick to travel and was moved yet again until mid October. In the meantime Levi went on his mommy/son trip to Cincinnati (also paired with his surgery) and Malachi’s disappointment was definitely noticeable.
I told him that as soon as he was feeling better we would make a special trip happen. I spent days tossing out ideas on where to go and what to do and he finally decided on a trip to Medieval Times in Atlanta. This week he continued to trend upward so Friday afternoon I booked tickets and we went on a spur of the moment trip, just the two of us!
And let me tell you…it brought us each more joy than I ever could have imagined.
One of the things I treasure the most is when I see glimpses of typical, 9 year old Malachi. As we traveled for this trip I explained to him where we were going and what we would be doing and he kept falling into a fit of giggles. His excitement and anticipation was such a gift to my mommy heart.
We booked tickets around 2pm, started packing at 3pm, and left the house by 4pm. This is not a normal thing for me, as I usually try to plan thoroughly for trips! I packed his oxygen concentrator and enough machines to keep him safe if his health started to decline. We made the drive to Atlanta and arrived just in time for the show at 7:30.
When I tell you that the experience was amazing, that is an understatement. I had upgraded Malachi’s ticket so that he could be knighted by the queen, and the employees there made it such a magical experience for him. They took time to learn Malachi, even learning his signs. The queen’s bodyguard asked him if he wanted to meet the blue knight (his chosen knight) afterward and Malachi signed YES! Seeing them treat Malachi with such respect and inclusivity was special to me.
After Malachi’s ceremony I wheeled him to the side to snap a picture and he went straight into character. He was a true knight, flexing his muscle and waving his sword. It was cracking me up that I couldn’t get him to smile…he was using his imagination so intensely.
I finally got him to crack a smile and then the rest of the night was full of giggles and fun.
The handicap seating for the show is at the very top of the stadium/arena and I narrated every second to him, Malachi clinging onto every word. He is blind, but the show included lots of lights so he was able to participate at the appropriate times. Whenever his knight got ready for his turn they shined the blue lights on us, cueing Malachi. He held onto his sword, swinging it when the blue knight started to lose a fight as if he was his sidekick in battle. His imagination was flaring and watching him brought me so much joy.
After the show Malachi got to meet the blue knight, who happened to be the winner of the tournament, and he was starry eyed. The knight signed Malachi’s knighthood certificate and he was one happy 9 year old.
I took a few videos of the night to share with Jake later, and I picked one to share with you all so you can see his pure joy:
We checked into a hotel and I gave Malachi a list of things to choose from to do next. He chose to go to a movie, so we headed to the theater and watched Minions until 12:45am. Then we settled back into the hotel for the night and got ready for meds and bed. Malachi couldn’t stop smiling in the room, so excited to be in a hotel for the night. The next morning when he woke up he processed for a second, and then when he realized where he was at he started beaming again.
My brother lives in Atlanta and my niece happened to have a soccer game so we headed there to cheer her on. We spent some time visiting with the cousins, then started on our trip back. We stopped on the way home and split a slice of Oreo pie (his choice…and he demolished it) and I let Malachi “buy me lunch”, helping him sign the receipt.
We were gone for exactly 24 hours. I knew the trip would be fun for him but I was pleasantly surprised. It just went so seamlessly without a single diaper blowout, big seizure, or dramatic medical issue. Our trips are always paired with medical appointments and procedures so having a trip without any other agenda was just so freeing and fun. It is hard to explain, but I felt like a real mother. Not just a medical mom, just a regular mom having fun with her son.
Seeing him so happy did something so good for my soul. It reminded me we may not know what we are doing, but our boys know that they are loved and treasured. And that they are heard and seen for the amazing individuals that they are.
Malachi is already asking to go back. When I asked him what his favorite things were he signed yes for the hotel and the Medieval Times. He was so excited to show Jake the pictures and videos and show off his new sword and shield.
As we were driving through the chaos that is Atlanta I turned on some praise and worship and became “that driver”, singing with all of my might. My heart was so light, airy and thankful. A relatively new song came on the radio called “Honey in the Rock”; here are a few of the lyrics:
There’s honey in the rock Water in the stone Manna on the ground No matter where I go I don’t need to worry now that I know Everything I need You’ve got There’s honey in the rock
I keep looking, I keep finding You keep giving, keep providing I have all that I need You are all that I need I keep praying, You keep moving I keep praising, You keep proving I have all that I need You are all that I need
These lyrics are pulled from several different scriptures in the Bible (Psalm 81, Exodus 16, Exodus 17), but the main theme being pulled from the Israelites time in the wilderness.
Every single day God provided them with the things they needed to get through that 24 hours. Without the provision of God they would have perished, completing a task that is impossible without Him.
And I feel that deep within my bones.
The things that I have to offer my boys are just not enough. Not enough strength, not enough knowledge, not enough money, not enough time, not enough sleep. I am not enough.
But God is my El Roi. He is “the God who sees”. And just like He sustained the His people in the wilderness I watch God sustain my family. Each day He gives us the nutrition we need to strengthen us for that days God-given agenda.
And every day He proves His faithfulness to us, again and again and again.
This week He not only gave me manna from heaven and water from the rock, but He gave me the blessing of precious, uncomplicated time with my son. What a treasured gift.
This week we focused on healing, spending most of our days at home and close to Malachi’s machines again. He was able to go off of oxygen each day for a little chunk of time but would tire out and require oxygen again.
As of tonight he is doing great at home without oxygen but cannot ride in the car safely without it. It seems to be a positional issue for his lungs. He also starts to dip in saturations when he gets warm so we are limited to staying inside right now.
We are officially two weeks in to this healing process, which is about the amount of time the last cold took for full recovery. It has most definitely been a long two weeks, with each day being different than the last. Malachi’s sleep cycle is very much out of whack and some nights this week he has been uncomfortable, staying up until 5am. My brain and body are tired and I am very excited for this extra long weekend with Jake home to help.
Levi’s imagination has been in full swing lately. This morning he convinced everyone that we have a cat named Bobo. He has been carrying his stuffed animals around and naming each of them, telling me all kinds of stories about their many adventures. He is at a really fun age. In the photo below he was being a “astronaut dinosaur rider” which sounds legit.
Malachi has definitely been feeling better and giving us lots of smiles and giggles. We have been playing a lot of pretend games and Malachi is very much enjoying using his imagination as well. This week he “bought a chocolate milkshake” and when I told him he owed me $5 he lifted his hand and put imaginary money into my hand without assistance.
They are both growing so much! This time last year we were battling Covid, and seeing photos from a year ago have shocked me…Levi has changed so much. He will turn 5 in November!
And here is a flashback of Malachi from 4 years ago (age 5) and today (age 9).
Weeks like this one are challenging in a lot of ways. Most typical days I can find a balance between mom and caregiver. But when the boys are sick I have to lean into the caregiver role. Our schedule becomes regimented with medications, machines, and feeds. It is really hard to spot the joyful moments in weeks like these and I tend to drift into a negative head space.
The devil also attacks my mind in these weeks with reminders that Malachi’s lungs will never fully “get better”. This is a continual thing that we deal with, and it has potential to be significantly worse as he gets older. The threat of life getting more complicated and harder is very mind consuming. And there is always the ever lingering reality of things taking dramatic turns.
This week Levi randomly walked into the room and asked, “Mom, what is fail?” He had heard the word and wanted the definition, so I tried my best to explain the term in a way a four year old could understand.
I can’t really remember exactly what I told him, but later that night I was beyond exhausted. It was 4am and I was struggling to carry Malachi to bed, his wires dragging behind me as I relocated our mini hospital to the bedroom for the night. Right before I plopped down into the bed to get him situated the sign above the bed caught my eye.
In big, bold letters it said “Love never fails” (1 Corinthians 13:8)
I got Malachi settled and started really thinking about the verse, particularly focusing on the word “fails”. I thought about my conversation with Levi and a flood of failures from the week entered my mind…there are just so many things I can say I am “failing at” right now. Not intentionally but as a by-product of other callings taking priority.
Regardless of my efforts, failure will continue to be struggle. And that is such a discouraging reality. And while it is a hard thing to accept, it does breed a level of humility in me that reminds me of my need for a Savior.
This week I read these verses and they spoke to me in such a new way.
My soul has been excluded from peace; I have forgotten happiness. So I say, “My strength has failed, and so has my hope from the Lord.” Remember my misery and my homelessness, the wormwood and bitterness. My soul certainly remembers, and is bent over within me. I recall this to my mind, therefore I wait. The Lord’s acts of mercy indeed do not end, for His compassions do not fail. They are new every morning; great is Your faithfulness. “The Lord is my portion,” says my soul, “Therefore I wait for Him.” The Lord is good to those who await Him, to the person who seeks Him.
Just like this verse says, my strength this week has most definitely failed. But even in my failures, the Lord’s acts of mercy haven’t ended and his compassions do not fail. His love never fails.
Children of God are not exempt from moments of despair and discouragement. But I am so thankful for the many verses in the Bible that remind me of what needs to happen when I let my soul get thirsty.
“Therefore I wait.”
“The Lord is good to those who await Him, to the person who seeks Him.”
Sounds like this week is meant to be filled with some seeking and waiting!
Sometimes the medically complex world hides around the corner and jumps out at us in the most inopportune times.
This past week Malachi and I were supposed to be in Nashville to meet with his surgeons and take his special trip. But Monday morning both boys started to show full blown symptoms of something viral. I initially held out hope that maybe it would be a short illness but by Monday evening Malachi was requiring supplemental oxygen.
Our appointment has been rescheduled for mid October, the soonest available date with these two surgeons. And as you can imagine Malachi was devastated. He was looking forward to his trip SO much and we had even started packing our bags and picking out which outfits he would wear.
By Thursday Levi was completely back to his normal, but Malachi’s body is still having a hard time recovering. He is still requiring 1-2 liters of oxygen but he is interactive and responsive which is a great improvement from earlier this week.
When Levi gets sick his airway gets restricted. Usually I can tell 24 hours before symptoms hit that something is coming because his stridor gets louder and he is very noisy at night. With his vocal cords being paralyzed there is not much room in his airway, so any tiny change makes it harder for him to breathe.
When Malachi gets sick we go into hospital mode, breaking out all of our medical machines and setting up home base in the living room. When Malachi is very sick we keep him upright when he sleeps in case he aspirates.
Our medical cart came in handy and had all the things we needed to avoid a hospital stay. His cough assist machine sends pressurized air into his lungs and then pulsate suctions the air out, something that we used several times each day to try to help clear his airway. His suction machine helps get any gunk out that he coughs up quickly. His pulse ox machine stays hooked up 24/7 to monitor his oxygen saturations and pulse so we can adjust supplemental oxygen accordingly. And his oxygen concentrator is vital! There were days this week we had to stay at 4 liters of oxygen to keep him in a safe range, which is my maximum comfort level for treating at home versus the hospital.
We are continuing to trial him off oxygen each day but his body just isn’t ready to work without the help quite yet. His discomfort has also been sparking some pretty hard seizures, and Malachi body is just so tired.
Sick weeks are very difficult physically, emotionally, and mentally. I go into a survival mode of sorts and ignore the normal rules of night and day. We just do the best that we can to keep everyone alive and home. We played lots of games, watched lots of movies, and used our imaginations more than ever before. We also took did lots of baths/showers, laundry, and lots of cleaning syringes. When the kids are both sick and we are adding in Motrin to our regular meds we use 28 syringes a day (all meds for both boys are administered via g-tube).
Levi even “made his own breakfast” while I took a quick shower one morning.
Malachi and I spent some time talking through some options for a mommy and Malachi trip. Jake and I decided that since this was the second time these Nashville appointments/trips have been rescheduled that we needed to prioritize his special trip instead of waiting until October. I presented him with so many options but he wasn’t reacting very enthusiastically to any of them.
When Malachi was little we took him to Medieval Times, so I thought I would see if that was something he would enjoy. When I asked him about it he started madly signing YES YES YES! That was it…the one magical thing he was waiting for haha. When Malachi is feeling 100% he and I will drive to the Medieval Times outside of Atlanta and attend a show, stay the night in a hotel, and come back the next morning. Having something fun to look forward to has perked him up so much. He giggles uncontrollably when we talk about it and seeing that smile makes again me so happy.
We have been trying short trips out this weekend to test Malachi’s stamina using the portable concentrator we were able to get with grant money when Levi was on oxygen 24/7 as a baby. What a blessing that machine has proven to be. Malachi is only handing a maximum of 2.5 hours before his numbers start to drop. So this week will likely be another week of staying close to home.
Jake and I wear lots of hats in our community and when weeks like this pop up we just do the best we can to divide and still continue our other responsibilities. Jake took over soccer practices and games as well as Wednesday youth group but by the end of the week I was ready for some mental distraction. The youth were scheduled to come over tonight for dinner and Bible study and we felt like the kids were healthy enough to continue with that plan (with some deep cleaning of course).
Tonight we had a packed house with over 40 teens. And Malachi sat in the middle of them all, hooked up to his machines and as happy as can be. As I watched the normalcy of the reactions to Malachi it reminded me of just how blessed we are to live in this community and to be surrounded by others who have accepted our normal as their normal. What a blessing.
Over the last few weeks I have had a verse playing in my head over and over again. It is a common one that most of you have probably heard as it appears multiple times in the Old and New Testaments. But for tonight’s entry I will focus specifically on Mark 12:31. Jesus was asked “Of all the commandments, which is the most important?” And this was Jesus’ response:
“And you shall love the Lord your God
with all your heart,
with all your soul,
with all your mind,
and with all your strength.”
The response could have simply been “You shall love God.” But It goes into detail about the ways we are to love God, and when scripture does this it always catches my eye as being something important to pay attention to.
As I looked at this verse I started to process the differences between each of these things…your heart, your soul, your mind, your strength…and evaluating how I am loving God in each of these areas. It is easy to say “I love God” but do my actions reflect that love?
Two weeks ago I felt conviction over “with all your strength”. I thought about the life of Christ and how He poured himself out for others during his short time on earth. He didn’t focus on “me” time, instead He focused on doing the will of the Father. And God continued to sustain Him. He even sent angels to minister to Him on two specific occasions (Matthew 4:11 & Luke 22:43).
We live in a culture that prioritizes self. But when we are loving the Lord our God with all of our heart, soul, mind, and strength I don’t see how that fits in there.
And just as God often does, He provided an opportunity this week for me to practice loving God with all of my strength and serving Him by caring for these precious boys that He has entrusted to me. I poured out every ounce of my energy as an offering to God, and when I changed my view from obligation to act of worship it blessed me.
There is so much power in the foot washing.
And after a week of pouring myself out I find my cup is so incredibly full of a joy and energy that is undeniably a gift from God.
God doesn’t need our strength. But oh how He loves to multiply it when we willingly and gladly place all that we have in His hands.
Please continue to pray health and improvement over our Malachi.
This week started with a Monday full of appointments. The boys see most of their specialists together, with the exception of neurologists. Malachi has been diagnosed with intractable epilepsy (uncontrollable, multiple seizure types) called Lennox Gastaut Syndrome and sees a neurologist specialized in epilepsy called an epileptologist. Levi just has one seizure type that is controlled right now so sees a different neurologist.
Levi’s neurologist also saw Malachi before his seizures progressed so he is very familiar with our family. He has also watched Malachi grow up and knows his norm well.
When he walked into the room his eyes immediately went to Malachi, who was grinning from ear to ear. As the appointment continued he kept his curious eyes on Malachi, which made me wonder if he realized we were actually there for Levi…a theory that I quickly debunked.
The appointment ended and before he left the room he turned around and said “This is the most engaged and interactive I have ever seen Malachi. He seems to be doing really, really well today. What is he so excited about?”
I laughed, because the truth of the matter was that Malachi was THRILLED to be at an appointment that wasn’t about him. He smiled from ear to ear the whole time. And to add to the drama, the doctor told me that Levi needed bloodwork. The fact that Levi had to get bloodwork done instead of Malachi was a first and set him into giggles (much to Levi’s dismay).
The blood lab employees know Malachi well and as Levi screamed during his draw Malachi just sat in his chair and smiled smugly. The phlebotomist turned and said “Are you just happy it is him and not you?” To which Malachi avidly signed YES.
And as you can imagine, Levi’s blood draw was pretty traumatic. The seizure medication he is on can cause his sodium levels to dip low so we have to do routine draws. Unfortunately they called a few days later to let me know that his sodium levels are in fact too low and they asked us to do another blood draw in the next three weeks before we make a plan of action to get those levels normalized.
Shhh….don’t tell Levi. Or Malachi.
The brotherhood of these two continues to be the highlight of each day. Malachi is getting more and more mischievous. One afternoon Levi feel asleep on the couch next to Malachi and I. I leaned in and whispered to Malachi “Be very quiet, Levi is finally sleeping.” Malachi smiled and proceeded to shout at the top of his lungs, trying to wake him up. Little stinker.
And Levi’s heart of inclusion continues to grow. This week he keeps scooting Malachi all over the house to be close to him. He pushes him to the entrance of the play room so they can play together, putting Malachi in handcuffs and taking turns being the policeman/firefighter/ballerina/magician.
Soccer season has officially begun, which is a family affair with the help of friends. Going to soccer games is one of Malachi’s favorite things to do as he loves the emotions coming from Jake as he coaches. And Levi loves playing with his buddies.
I can’t get past how much Levi has grown lately! He will turn 5 years old in just three short months.
This week is a big one as Malachi and I prepare for our Nashville trip. To say that he is looking forward to it would be an understatement. There is a medical side to the trip as we meet with Malachi’s ortho surgeon and his spine surgeon.
Last year his ortho surgeon mentioned the need for some more foot surgeries and tendon releases. I am really hoping it is something we can continue to put off, but regardless this appointment is to evaluate that, not actually perform the surgery.
His spine curve last year was 45 degrees and we are continuing to watch that for any major changes. Many kids with Malachi’s spasticity require major spine corrections in their lifetime, a surgery that is a BEAST and requires metal rods to be fused to his spine. This would be a very hard surgery for him and one we are not eager to have. But the body positioning can create pressure on the lungs and make it difficult for him to breathe over time. We are continuing to pray that Malachi’s quality of life can continue without these major interventions. While I don’t suspect that his degree is significantly different based on what I can see, these appointments take me down some difficult mental “what ifs”.
There is also a fun side to the trip each year as we make this a special mommy/Malachi trip. I let him choose the activities we do and he takes the role very seriously. This weekend I sat him down and presented all of the options to him and it took him just ten minutes to set our itinerary.
He wanted to watch a new movie so I pulled up the trailers to a few. When we finished the trailers I gave him the titles of the movies he could choose from and then gave him the multiple choice list, pausing after each one to allow him time to say yes or no. “Minions”? no reaction, “Super Pets”? no reaction, “Jurassic Park”at the hotel? Firm NO sign.
After we narrowed it down to two I started the list over again and again he sat stone cold faced, refusing to sign yes or no. I then asked “Do you want to see both of them?” And he nearly came out of his chair he was signing YES so hard.
He chose a few more activities to do, but his primary goal is watching TWO movies while we are there…which mind you is a 24 hour trip. I love his opinions and the freedom he feels expressing them. He also made sure I knew that he wanted a cookie while he is there. Last year he had a cookie and I guess that has become a tradition, because he has never EVER chosen a cookie over the other presented options.
He giggles every time I mention spending the night in a hotel. I can’t wait to share our adventures with you in next week’s blog!
Luke 9:62 But Jesus said to him, “No one, after putting his hand to the plow and looking back, is fit for the kingdom of God.”
In this scripture Jesus is talking specifically about the cost of following Him, and the level of commitment He desires in that walk. Too often we cling to pieces of our former selves and the mix between the hot and cold makes us simply lukewarm in our walk with Him.
I have been really thinking about this verse this week, trying to evaluate the ways in which I “look back”. What things from my past tend to catch my attention and slow me down in my current walk and work with God? What things are my eyes and memories drawn to?
And the answer that I have come up with has surprised me a bit.
My past is littered with hard things. Lots of rejection, lots of insecurities, lots of broken relationships. Then layer on the countless medical traumas with the boys and all of the memories that trigger from those events.
These stories in my past and these scenes that I can’t seem to forget are not in themselves sinful….but oh how they are so distracting! I can be plowing along and something will spark a memory and the emotions that come with it.
The devil can easily take our memories and use them to distract us from the work God is calling us to do.
Sometimes I find that I have created an idol out of my “victim moments”…moments when someone else’s actions truly hurt me. I cling to my hurt, feeling justified in it- and the world would absolutely affirm me in those feelings. But God calls us to a life that looks forward, not back as He called us to draw nearer to Him.
Yes, our testimony can be what God has brought us through. And the lessons we learned along the way. But there is also such a testimony in the plowing we continue to do for the Kingdom of God despite the distractions from our past that beckon to us.
“…forgetting what is behind and straining towards what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” (Philippians 3:13–14)
This week I am praying for focus. I am praying that I am able to fight the temptation to dwell in the past hurts and traumas the devil continues to highlight in my life.
Please pray for our family this week as we tackle another medical trip. Pray for Jake and Levi as they hold down the home front, and Malachi and I as we travel and meet with doctors. Pray that my heart is prepped to receive any potential hard news we may receive.
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.