The last few weeks have had their share of ups and downs. Transitioning into the school schedule has been harder this year than in the past but we are slowly adjusting and settling into routines. Every day I start with a list of things to accomplish and before I know it it’s 2am and I still have a list of unfinished things try to accomplish the next day.
Levi started the second grade and loves to learn. School is one of his favorite places to be, and he is always bubbling with such excitement when he gets in the car each day. I love getting to hear his version of the day’s events and hear the highs and lows of an 8 year old.
Malachi is also thriving, waking up on school days with a big smile on his face. And at the end of the school day he smiles even bigger when we ask him about his day.
Both boys came down with a back to school cold and Malachi had to take a week off. Usually with a standard head cold he is on oxygen 24/7 for about two weeks, and thankfully with this one he was able to come off of oxygen after 6 days.
I am continually thankful that we have all the equipment needed to keep him safe at home. During this round I flashed back to when he was little and similar sicknesses would hit him. We had to start the mental flow charts of deciding where the line in the sand was to take him in to the hospital. Since we live an hour from the local Children’s Hospital we are always trying to find that sweet spot with getting him there safely without incident. I can feel my heart beating faster just THINKING about those early days.
Malachi had a follow up appointment with the neurosurgeon to review a recent CT scan and, while his ventricles are slightly changed, they think this is his new baseline and are happy with the way his shunt is now functioning.
And since Malachi is officially cleared from all surgeries to get back in the pool, he enjoyed a nice float on Labor Day! He also started back at physical therapy last week, and is hoping to return to his horseback sessions soon.
This season of life is always a bit busier than our normal busy, as we still coach the high school girl’s soccer team. Coaching is something everyone in our family enjoys, especially Malachi and Levi as they get to hang out with some really fun girls. And Malachi LOVES a competitive game….especially when he hears dad yelling loudly.
Levi comes home from the games with all sorts of questions from things he has overheard on the bench, most of which make us chuckle. “Mom, is chicken butt a bad word?”
Levi’s personality continues to grow and having conversations with him is so special. When Malachi was sick, Levi and I took time for a mom and son date and went to the local fair. I used to be able to ride roller coasters like a champ but WHEW those days are long gone.
We met with some of his friends there and by the end of the night he told me “Mom, you know how dad and you dated and got married? I think that _______ is my type. I think I could marry her.”
He has since changed his plans and spent most of the day Sunday planning a wedding start to finish with another friend from church. Hearing them discuss the invitations, seating chart, and who would walk her down the aisle made me laugh. He is definitely a details guy. He even made her an engagement ring with some construction paper and tape.
Oh, and they started house shopping. I had to make him put his real money back in his piggy bank. Levi came up to me and asked “Do you and dad have joint bank accounts? I think we are going to do that too.” How he knows about that I have no idea.
We aren’t the type to encourage “relationships” among children, but we support imaginative play and this just so happens to be the topic of choice. We make sure to continually remind him that this is a pretend game he is playing with a friend.
Levi has decided he no longer wants a g-tube. We have been trialing a lot this summer on withholding his nighttime feeds on days he hasn’t done a lot physically, and still running the pump at night on days he has been active. On days off the pump he wakes up immediately asking for food and complaining about how hungry he is. He is definitely still burning extra calories with his breathing, but I also can relate to his desire to be done with the g-tube.
My biggest hesitation is administering his medications without a g-tube. He takes 5 doses throughout the day of several meds, including his epilepsy medications. For a typical situation we would work to start teaching him how to swallow pills, but there also is a fear in that process as he has the potential to aspirate uncontrolled fluid into his lungs during that process.
We are meeting with his GI doctor this week to discuss the next steps for Levi. I want him to know that his opinion and voice does matter and teach him how to self-advocate.
Mentally, I have been swirling a bit over the last month. I am thinking/moving/doing from 7a-2a every day but still feeling like I am not getting enough done. I feel like I am doing a very subpar job in each of my roles, which can get discouraging. Sleep has been choppy and rare with the boys being sick, and I am feeling every bit of caregiving deep in my bones.
I read a devotional last week and it took my breath away. I wanted to share it with you all, but please understand that I am only putting portions of it below, and not the whole article as it is rather long. I encourage you to read it in its entirety and will link it at the bottom of this entry.
“It was ‘good’, not perfect.”
Article by John Swinton (Linked below)
“Let’s begin with the suggestion that the original state of the world was one of perfection. Although some default to this language when interpreting the Genesis creation narratives, the text itself never uses this term. While Eden was originally untainted by sin, the Bible does not suggest that creation was perfect in the sense of flawlessness or static idealism.
Instead, the divine pronouncement is that the creation is good (tov in Hebrew). This word, in its biblical and theological context, does not imply perfection or uniformity but denotes relational integrity, aesthetic richness, diversity, and the capacity for fruitful, dynamic life and connection.
Adam bears the wound that makes community possible. His body, altered to make space for another, testifies that limitation and change are not contradictions of goodness but are conditions for love. If the grammar of Creation is goodness and not perfection, then bodies marked by difference, by need, by variance, are not deviations from the human norm. They are part of it.
What the church should see is this: The first scar in Scripture was not caused by sin, but by love. It was not a punishment. It was the cost of communion. If we miss that, we miss something important about the gospel.
Our wounds (like Adam’s) are not always chosen, and they are often not healed. But they are not disqualifications from belonging. They are reminders that we are part of a creation still yearning for its fulfilment that will be complete in the coming kingdom of God.
The church must learn to hear and resist this distortion. If God’s creation is good, then every life within it, regardless of capacity, cognition, or conformity, is already gifted with divine affirmation.”
You can read the whole article here: https://www.christianitytoday.com/2025/09/it-was-good-not-perfect/
Such beautiful truths that I needed to be reminded of. I hope they bless your heart as well.
Much love,
Leah