October is almost here and it is my absolute favorite month. The visible change on the trees always reminds me of how creative God is! There is a line in Anne of Green Gables that I always think of: “I’m so glad I live in a world where there are Octobers.”

The weather drama tends to slow down in October and Malachi just seems to level out. He has a VP shunt and barometric pressures can really affect him. We have several big appointments in October this year- Levi’s eye test and appointment, Malachi’s spine and orthopedic appointments, and a few other biggies.

Both boys are doing well with their schooling. Levi had a handwriting test last week that he worked so hard on so we celebrated big time. Those fine motor tasks are such a challenge for him. We don’t aim for perfection but just HIS best.

And Malachi is still loving spending a few hours each day with his friends…and getting a break from his mom.

Malachi’s cold from the first week of September continued to linger in his lungs so we started an antibiotic to kill any bacteria that might be sticking around. We also have continued breathing treatments and respiratory regiments to keep it from turning into pneumonia but thankfully he hasn’t needed any supplemental oxygen since our last post.

Mom guilt is a tricky thing. And I would venture to say a little bit more complex for a family like ours as equality isn’t really every something we can truly offer.

As Levi grows I find myself eager to find adventures that align with his interests and be a little more bold and ambitious. When Malachi was younger I was much more hesitant to enter new places, partly because of his compromised immune system. I was thinking back to when Malachi was 6 years old, like Levi is now, and that was when Levi joined our family and we were displaced at the hospital in Cincinnati for nearly 5 months. Then when we came home we were dealing with a new world of oxygen and feeding pumps, limiting my boldness as a mom even more.

When I reflect on my eagerness to give Levi fun memories right now I find myself feeling bits of shame that I didn’t try harder for Malachi when he was this age. I remember mild attempts, like the Harlem Globetrotters, but we were new into the medical world and many of our attempts overstimulated him and set him into massive seizures.

Two weekends ago we booked tickets to Disney On Ice and successfully kept it a surprise until the car ride there- something that is oddly hard to do with nosey Levi.

Levi loved the show, eagerly sitting on the edge of his seat and watching with imagination. I narrated the show to Malachi and he just sat and listened, unamused and frankly bored. When I asked him if he liked the show he signed a very half-hearted yes and did so in a way that I knew he was simply trying to not hurt my feelings (sweet boy).

I started wondering….did I miss it? Did I miss that precious age with Malachi where imaginations can run wild?

Entering the scene: mom guilt.

Now logical Leah can sit and explain that his tastes have changed. That we were doing what we thought was in his best interest at the time. Etc, etc, etc.

But illogical Leah says that I just didn’t try hard enough. And that time is running out. The imagination is still there and running strong. So how do I unlock that?

And the realistic Leah recognizes that my ability to continue to help Malachi physically experience certain parts of this world is dwindling. He is now 55 pounds and talking people into letting him try things is getting more and more difficult, mostly being told no due to liabilities.

The boys had two days off this week and I decided that I was going to find a knock-it-out-of-the-park home run of an idea that both boys would love. I went through the classics and just couldn’t seem to be content with recycling things we have already done.

And then I found it…the golden idea that both boys would love. Close to our hometown in Ohio there is a massive Renaissance Festival that takes place each fall. Jousting, falconry, knife throwing, horses, knights, games, rides. This particular one offers 100 shows each day! I planned out our itinerary for the show and then started packing bags.

I tried to think of all the potential emergencies and plan for them. We packed oxygen concentrator, breathing machine, CPT machine, cannulas, pulse ox, and so many more devices that would stay in our car just in case it was needed. Then the meds, supplies and diapers that we use on a daily basis.

I broke the news to the boys about our special surprise trip and they were both giddy with excitement. Unfortunately Jake had to stay in Tennessee for work. We made it to Ohio just in time for the overflow weather from the hurricane to hit. The forecast looked awful for an outdoor festival but at this point I was invested and determined to make it happen for Malachi.

We woke up the day of the festival and we grabbed our rain boots and rain coats and picked up my little brother who wanted to also join in on the fun. We made it all the way out to the entrance only to find out that the power had gone out and the festival was suddenly closed for the day.

I now had three very disappointed kids in the car so I declared it “Spectacular Saturday” and made it a yes day for them. We played arcades, mastered laser mazes, rocked some laser tag rounds, ate sandwiches and so many more fun things.

Later that evening I asked Malachi if we should try to do the festival the next day right before we had to leave town and he flashed the quickest grin. His little heart was just so set on it.

So we made plans to try again but unfortunately the power still had not returned to the festival Sunday morning so we made the trip back to Tennessee.

We didn’t get to do our big adventure but we still made some memories. Obviously Malachi was disappointed but after a few grumpy hours he moved on. And he was able to finish a few books on the drive, including “The Lion, the Witch, and the Wardrobe” which made him happy.

And to be truthful, I really enjoyed the book as well. There were so many things I spotted as an adult that just meant something different from when I was a child.

One particular line that caught my ear was about one of the main characters named Peter.

“Peter did not feel very brave; indeed, he felt he was going to be sick. But that made no difference to what he had to do.”

Wow did that line hit me hard.

Being in Ohio is difficult for me. There are so many memories there, both from my childhood and my time in the hospital with Levi. It seems that every road I pass brings up some buried memory- sometimes good and sometimes bad.

I struggled very much this trip with trauma. And what is so intriguing to me is that trauma is so ingrained that it can overtake your body and mind without any effort or consciousness at all.

I was zoned out, focusing on the road, and I suddenly felt sick to my stomach. It came on so quickly and aggressively that it caught me off guard and I started to look around to find the origin. At that very moment I was passing a exit we used to often take when Levi was in the ICU in Cincinnati. I was on a road we hadn’t really traveled since then and my mind kept the score.

2 Corinthians 10:4-5

“The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.”

This weekend reminded me of many strongholds that still exists in my walk with Christ- things that tend to take my focus away from Him. Taking every thought captive is an exhausting process but absolutely necessary for keeping focused on Him.

Levi is a very sensitive 6 year old so Malachi and I have been listening to the more mature content books when he is away or sleeping. We made it to the final chapters of the book where Aslan the lion goes to war against the witch and Levi woke up.

I looked in my mirror at Malachi who was on the edge of his seat with excitement, eager to hear what happened next. And Levi asked what the story was about so I decided to give him a quick summary to catch him up so we could continue the final chapters.

I explained that Edmund had made some bad choices and the penalty was death. But Aslan the lion took his place to save Edmund. As I talked through the details of this I found myself getting very emotional, touched by the parallels of what Christ did for us. The similarities in the story were not lost on Levi and he said “Just like Jesus died for us!”

And the three of us listened to the hard parts of that story together, knowing that something even greater was coming.

Sincerely,

Leah

After a long two weeks our family is finally all healthy, well, and off of oxygen. Jake’s cold from two weeks ago made it through the family, hitting everyone except for Levi. There is no explanation other than God as to why Levi didn’t get it!

I know it sounds odd but it is helpful when I get the sickness before Malachi so I can gauge a timeline of symptoms and how difficult it will be on his system. When you are raising a non-verbal child each day is like a mystery, trying to collect clues and fill in the wordless gaps as best as possible.

There was a 24 hour chunk between the photo above and the photo below. Malachi started to shut down as the symptoms came on, slowing his breathing down to dangerous levels. As soon as his oxygen dropped we started supplemental oxygen and his breathing treatment regiment: nebulizer, cough assist, CPT (shaky) vest. We also kept Motrin on board regularly to keep him comfortable.

Malachi’s cerebral palsy, specifically his low tone, makes it hard for him to clear his airways. He was pretty miserable but still had a great attitude. We canceled his in-person appointments for the week and focused on resting and healing.

This weekend we were able to wean him back of oxygen safely and we are back into our normal routines! I am so incredibly thankful that we have been given access to all of his home equipment. We can run the equivalent of a regular hospital room here at the house, allowing us to stay home during illnesses like this one.

Prior to having these home machines we would have to be admitted with every respiratory illness, often staying for weeks while we waiting on him to be strong enough to get discharged. I can think back to the dozens of times we have just sat in the hospital, trying to overcome a common cold and being exposed to much worse illnesses in the process.

I am increasingly thankful for the relationships and the trust we have been able to develop with his specialists! Home is the best place for him to heal and for us to truly watch for his baseline without other factors added in.

Malachi got off of his oxygen just in time for us to attend the Make-a-Wish night at the Red Wolves soccer game in Chattanooga this weekend. Attending sports events is one of his favorite things to do. He loves the crowd drama, the chaos, and having the game narrated play by play. You can tell when he is intently listening by his eyes…I took a few pictures so you could see his engagement as Jake narrated for him.

On a side note- a shameless plug here….Malachi and Jake love to watch the Bengals games together when they are televised here in Tennessee. If any of our Ohio friends ever have access to some discounted Bengals tickets send me a message! It would be such a treat/memory for them to attend a game in person together. I would video them watching a game to share it with you but Jake might be too embarrassed by his intensity haha. Malachi shouts, laughs, and screams with joy too.

Anyway, back to the Red Wolves…

We kept the game a secret from the boys just in case Malachi wasn’t stable enough for us to go. So when we finally told them where we were going as we drove there Levi was ecstatic. He loves our family adventures, and even more when they are a surprise.

The Red Wolves is not the most accessible arena, so the only way to watch the game from inside the stadium is going through the Executive Suite, which has unlimited drinks, cookies, and hot dogs- Levi’s love language. The Red Wolves have always been so kind when we attend games to make sure Malachi can be included in the fun!

The night ended with fireworks over the stadium. It was a special night and a much needed adventure after several weeks of staying home and healing.

Prior to sick week(s) the boys had some great school days. Malachi is still coming out of his shell and we have been so happy and thankful with the huge progress Levi is making.

This week I wore many hats as mom, nurse, respiratory therapist, etc. I am not trained for a single one of those roles so we figure it out as we go, using observations I have gathered over the years from our many stays.

One particular night this week Malachi seemed very stable and strong so I tried turning his oxygen down a tiny bit. He handled the change for a few minutes, then started to dip his saturations into the dangerous stage again so I turned him back up.

As I was contemplating what to do next I thought back to the last time we were in the ICU. Malachi had a hard time bouncing back from a respiratory illness and needed high flow oxygen to help push the carbon dioxide out of his system. He started at 20 liters which is crazy high.

It took several days for us to wean him down from such a high liter. He handled the wean process well until we got down into the lower liters. I remember the respiratory therapists coming in and turning him down a liter and leaving the room. Malachi handled the change decently for a few minutes, then dropped down into the low range and struggled to breathe. My momma heart panicked and called them back in to re-evaluate if he was handling the wean safely and they reassured me that this was the only way to truly test his respiratory system. If we didn’t challenge it by decreasing the flow we wouldn’t truly know when he was ready to come off of it.

Malachi’s numbers would dip low for awhile, but as he continued to work on his breathing at the lower liter amount he would steadily find his breathing pattern and his body would settle into the change.

This process continued, as did the struggle moments in between each wean. I didn’t want to watch him struggle. I wanted to see his chest move up and down with ease. And when things were hard I wanted to rescue him. But his body needed to feel the struggle and overcome it.

This week as I cared for Malachi I kept flashing back to those uncomfortable moments for me bedside, watching him struggle through the wean process. I can still feel the panic bubble up in my belly just thinking about it.

But the more I thought about the process the more I recognized its necessity.

As I read through the Word this week I couldn’t get this process out of my mind. The process of removing the comfortable and exchanging it for the struggle with the desire for growth.

I thought about the many emergencies and moments that have happened in our lives where our comfortable was very drastically removed. And like Malachi, I sustained the transition on my own for a very short time only to realize that something had to change.

The struggle had the ability to strengthen me through leaning into the Lord’s strength or break me by relying on my own.

Faith is a choice. It isn’t a one time choice, or a moment of salvation. It is an every second of every day decision to pursue, obey, honor, and submit to God.

These trials that we face are an opportunity for our faith to grow legs and learn to walk through new waters. Like Jesus healing the lame, we are able to miraculously be given the strength and ability to walk into into the roles God has called us into. Even the hard ones.

Romans 5:3-5 “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does it put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Tonight I am thankful for the Holy Spirit that has been poured into my heart by God. I am thankful that He trusts me enough to wean me off of the comfortable and patient with me as I struggle a bit and realize that I cannot do things apart from Him. I am thankful that God has armed me with the weapon of faith as he calls me to battlefields that I am not prepared to enter.

What a treasure a walk with the Lord is. And what peace it brings in the midst of chaos.

Thank you for your prayers last week over our family.

Leah

We are now a few weeks into the school year and both boys have been settling into their new routines. Academic work is a real struggle for Levi, but watching him develop a work ethic and try hard has made me proud!

I laughed out loud looking at those last two photos of Malachi. His legs have grown so incredibly long and he doesn’t easily bend at his knees. I think he is going to outgrow this wheelchair sooner rather than later.

We have successfully been able to get Malachi’s bedtime from 3am to 1:30am and all meds have titrated to more reasonable schedules.

Malachi has been very quiet at school still and tells me he is “embarrassed” when they they are helping him use his instruments or when he is the focal point of anything. Seeing him so quiet and reserved has been such a surprise for me. Every day I am encouraging him on the way to school to be himself but he is still holding back.

Late last week I watched him sign successfully with his teacher and it brought me to tears. I love seeing him work towards some independence. How empowering it must feel! I keep asking him if I need to come to class with him to help him be himself and he is very quick to sign no. Not cool, mom. Not cool.

Last week a student came up to Malachi and asked innocently “What’s wrong with him?” Malachi pursed his lips, clearly offended and unamused by the comment. As the teacher softly corrected the student I leaned down and explained to Malachi that he had likely not seen a child in a wheelchair before and that we needed to give him some grace on his wording.

Later that evening I was recapping the conversation with Jake and Malachi and apparently Levi was listening in. The next day at school he went up to the boy and indignantly said “You hurt my brother’s feelings!”

If I am being honest, seeing Levi stand up for Malachi touched me deeply. Their relationship continues to grow in so many beautiful ways.

During our homeschool hours Malachi is finishing several chapter books each week and doing great! Levi is also working hard at home on his virtual schoolwork and is discovering a new love for Malachi’s audiobooks. He wakes up talking about where we left off in the story.

We have been blessed with a stretch of “simply routine”. Routine appointments, therapies, issues, etc. But there is always an undercurrent of potential emergencies that dances in the background of my mind.

One of the hardest parts of being a medical mom is knowing when to react and when to wait and see. There is a delicate line there. There are certain rules that I have made up in my mind for when I take them into the hospital when they are sick but sometimes issues pop up that could potentially be a big deal. I know when we mention them to providers it is going to lead to a frenzy of panic, imaging, tests, and appointments. Which is often warranted. But knowing that it will lead to chaos makes me really sit and process to make sure it is necessary at that stage or if it should wait.

We had one such issue last week with Malachi. He has grown a lot over the last few months and I have been watching his rib cage slowly become less symmetrical. Both of his hips are dislocated and Malachi has significant scoliosis so there never really is an ideal shape, but it has definitely become more prominent.

We were scheduled to see the orthopedic and spine surgeons in a few weeks and they just rescheduled that appointment to late October. I sent them images of the rib cage changes over email and mentioned it to Malachi’s physical therapist. She was very alarmed and sent us for X-rays immediately.

In the meantime, Vanderbilt surgeons wrote back and assured me that we can wait until his appointment in late October to make the plan but it looks like his scoliosis has progressed to the point of needing spine surgery. This is a big deal and something we have been dreading, but if left untreated it can lead to lung restriction and him not being able to breathe.

This first image shows his scoliosis in 2021. Not too bad (in context).

This next image was taken last week and is obviously pretty bad. Our criteria for surgery was a 50 degree curvature and he was at 45 degrees last October (35 the year before that). I am already dreading that October appointment and bracing for the hard conversations that will have to take place.

Malachi isn’t indicating that he is in pain, and in fact giggled during his X-rays, clearly loving the attention from the pretty techs.

Between schoolwork, therapies, appointments, and soccer we are definitely sleeping hard each night!

The dogs don’t sleep with Levi but they go in to tuck him in each night. He loves them so much!

I am still adjusting to all the recent schedule and life changes. The thing I didn’t account for was how physically sore I would be from taking care of Malachi solo after a summer of having Jake around to help. He is growing and lifting him is getting more complicated. And the mental fog that comes from a lack of sleep and in increase in responsibilities.

Last week I shared a portion of an interview with you from Martin Pistorius. I have been reading his book, Ghost Boy, over the last few weeks and what an eye opener it has been! I highly recommend it to all parents, friends, caregivers, and family members to someone who is nonverbal. Trigger warning- there are some really hard parts to read in this book that talk about abuses he suffered.

Martin was very much like Malachi for years, trapped inside his own body with no way to communicate. He writes about the things he observed about his own parents and I have shed so many tears reading through his perspective.

He wrote a sentence about his father (his primary caregiver) at the very end of one of those chapters and it felt like I was looking in a mirror.

“While I can’t be sure, I sometimes wonder if all these lost hopes and dreams are the reason why a man as intelligent as my father has learned to hide his emotions so deeply that I sometimes wonder if he knows where they are anymore.”

This deep thought made me gasp as it describes something I really struggle with. And I would venture to say that most medically complex moms also deal with this same struggle.

We are required to keep tight reins on our emotions. That sometimes appears like we are being arrogant, fake, and closed off but in fact that is a coping mechanism we have developed to compartmentalize our grief. I am not advocating for his, nor am I claiming that this is a healthy practice. It is not something I set out to do or glamorize.

But it has become a part of our caregiving/parenting (my primary identity right now aside from Christ follower of course) and therefore overflows into my friendships and other relationships. Our children have hearts that beat in tune with ours. My emotions flow directly into Malachi and he often matches them. He is so in tune with my emotions that I have to work very hard to regulate myself, even in life or death emergencies, to be a source of strength and comfort for him. So I have learned to stuff those emotions deep down and process them when I am alone, which is very rare.

“…I sometimes wonder if he knows where they are anymore.”

That was the line that made me really consider if I even know how to find those unhindered emotions anymore. To “feel” the way that everyone else does. After 11 years of learning how to cope with the hard I find myself no longer knowing what normal looks like.

This makes friendships hard. I feel like an alien in “normal” friendships- recognizing that I am not doing it right but not quite sure what right looks like.

Special needs parenting changes you. It is a form of trauma. It is a world of joy & grief, wins & losses, temporary & permanent. It is an isolating world with a language that not many can speak.

I am thankful that I belong to a God who truly knows me. He knows my motivations, my inner thoughts, my deep pains, and my insecurities. He doesn’t affirm them, but instead He refines and purifies me from them. I am so thankful that I am not my own.

Psalm 16:1-2 “Preserve me, O God, for I take refuge in You. I said to the Lord, ‘I have no good besides You.’”

This week I am reminded to seek refuge in Him and not in the dark closets I like to retreat in to allow myself to “feel”. To take all of my failures and fears and lay them down at His feet in surrender. And to trust that this cup He has placed in my hand is overflowing with strength, wisdom, and God’s sovereignty.

Please keep us in your prayers this week as Jake started the symptoms of sickness this evening. It is a matter of time before it hits the boys and usually a common cold will put Malachi back on supplemental oxygen for a few weeks. And lead to Levi’s airway swelling and lots of vomiting from his gag reflex. Join me in praying against all germs!

Sincerely,

Leah