If I am being perfectly honest, I have a very hard time being still. I am a projects person and have always packed my days from start to finish with productivity- well, I guess I should be more honest and say “busyness” as it isn’t always productive. Even when I am resting my mind is actively detailing each upcoming project. I worked three jobs in college, 7 days a week, and took on 18-21 credit hours each semester to graduate with the lowest debt possible. I crave busy- almost to the level that it becomes an idol so it is something I have to cautiously watch.
I recently made the decision to step away from my job as church secretary and it has left an odd void in my brain. When Covid hit in 2020 our church closed the office and I worked from home, going up to the actual office when needed to complete the tasks I couldn’t accomplish at home. Slow days at home used to become church office catchup days. Now slow days at home are just that…slow days at home.
The temptation to pack those days is ever present but I have been trying to consciously fight those urges and find contentment in being a stay at home mom. I have been trying to establish routines and am reminded each time that the task isn’t an easy one with medically complex children. Sleep routines are still wonky; some nights this week Malachi slept a total of 2.5 hours, and other nights he slept 6 hours. Each day is a new one with no preconceived notions from the last.
We spent most of this week at the house playing games, catching up on medical phone calls, and being intentional with our time. The boys did some painting which they both thoroughly enjoyed.
Side note- pee pads work as wonderful table covers when painting! Excess medical supplies for the win!
The boys also got to spend some time in the therapy pool. The temperatures are cooling down and it is prime time for them to spend evenings in the pool.
We titrated Malachi’s CBD oil up for a final time early this week and it always takes some time for him to adjust to the new dose. We have officially maxed out the medication level for him post-liver failure. They are worried about going any higher than 0.7mls, but he was formerly at a dose of 1.5mls. The good news is that the tiny increase we were able to do this week (0.2mls) did seem to help us gain a bit more seizure control. He was having 6-8 pretty nasty seizures a day. Some of them were lasting longer than 4 minutes. But as of today he is only having 2-4 and they are much more mild.
His personality is starting to return as well and you can tell that he is generally just feeling better on the new dose.
Levi is changing by the minute it seems. His vocabulary is continuing to grow and the things that he says are legitimately funny. We have been working hard on manners and how to handle big emotions- I have never met a more empathetic kid in my life. He cries during most Daniel Tiger episodes. He has such a tender heart.
This week I was playing a song while doing chores and I noticed Levi intently listening. He joined in and much to my surprise he knew most of the words! I filmed a little chunk for you:
This week Jake is on fall break and we have some exciting adventures planned as a family. We have had so many tough weeks lately and Jake and I agreed that we need to create some fun for them. I am confident we will have some great stories to share with you next week as we have been scheming since Covid week.
I have been thinking a whole lot about discipleship lately. I recognize that the term may be a foreign to you so I shopped for a definition that I liked: “teaching biblical precepts, while modeling and guiding others toward living righteously as followers of Jesus Christ”.
I have been specifically burdened (in a good way) by what I want discipleship to look like with my own children. As youth leaders we see dozens and dozens of children each year, and it doesn’t take long to spot the ones that are being discipled at home. Too often families believe that the burden to disciple is on the church. But the time I spent with my children far outweighs the 2 hours they sit in church each week.
It is an honor to me to be able to introduce these boys to Jesus. To help God’s word come alive to them and help them understand what a relationship with God looks like.
But how in the world do you disciple a 3 year old and a medically complex 8 year old?? That question has been swirling in my brain as I try to find out what God wants me to focus on with each of them.
I was THRILLED to find some amazing books to help and I thought I would share them with you all in case you are hunting for something similar. They came in this week and they have already served as great stepping stones to intentional talks about God.
Here is a link to the books in case you want a set for yourself or someone else: https://www.amazon.com/stores/page/89EAC3F9-C534-4BBE-9EF1-485CE9DCA20E
While these books have been helpful at the teaching aspect of discipleship, the modeling and guiding parts are proving to be the most challenging. These boys see me at my worst. They see me when my temper is short. They hear me gossip. They get front row seats to my sinful and human side. But these ugly moments are such great teaching moments for them to learn from as well. Moments when I can point to the grace others have shown me. Moments when my tank is empty and I have to call out to Jesus for strength.
I guess the word for the night is ”intentional”. I am working at being more intentional in discipling both boys.
Billy Graham said ”Our faith becomes stronger as we express it; a growing faith is a sharing faith.”
I am not really sure why I typed this as it doesn’t sound like a devotional. But my hope is that by sharing my inner dialogue that maybe I can help encourage you in whatever discipleship or Kingdom work you may be called to. Who in your life needs to meet your Jesus? Who needs to see your ugly, weak side to help them truly understand the grace and power of God?
How many opportunities do we miss when we allow ourselves to believe we aren’t equipped or qualified to share the gospel with others?
I will be praying specifically this week for opportunities for each of you to get to share a piece of your faith with someone else. And I will pray that God gives you eyes to spot those opportunities and courage to start those conversations.
2 Timothy 1:7 “For God has not given us a spirit of timidity, but of power and love and discipline.
And please continue to pray for our family. And selfishly I ask that you pray for me as I shift my focus from fruitless projects to the Kingdom work in my own family.