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!