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