Fall is here! This is my favorite time of year here in Tennessee as the weather is very Carroll boy friendly. The cooler temperature and low light are easy on Malachi and we love to spend time outside on the playground and time in the therapy pool.
We also broke out some of the clothing in storage to see what we have for Levi’s fall wardrobe. Even tasks as simple as these can trigger some emotions that I never see coming. Early on in our journey with Malachi I ignored common sense often and bought clothing for him that just wasn’t practical…we have to be very cautious with the clothing we put on him and many can accidentally come up over his mouth creating a suffocation risk. I would bring the items home and put them on Malachi only to realize that my superficial mommy desires were trumping what was in Malachi’s best interest and into the storage bin they went. Opening those bins is a flashback of sorts and brings back those moments of not getting to be a ”typical” mom. Being able to put them on Levi is surreal and heals my heart a bit.
Speaking of clothing, Malachi went back to school this week! I let him pick out his outfit as often as possible and he was extra picky, nixing four shirts before settling for his green alligator shirt and a superhero bib. He was incredibly opinionated, signing ”NO” as clear as possible.
School looks very different for Malachi and it is written into his IEP that the school system will honor whatever schedule we as his parents deem is best for him. Obviously with his health surprises over the last two months he has not been in a stable enough place to consider going at all. He still does not have any seizure control right now but we are continuing to titrate his old seizure medication up in hopes of getting a grip on those. On Tuesday I will increase to our new maximum dose for his CBD oil (Epidiolex), but even that dose is less than half of what he was taking pre-liver failure. His epileptologist is just not comfortable taking him back to that dose anytime in the near future.
With so many seizures each day and each of them lasting for several minutes we have been hesitant to take him back to school. We have started off slow, taking him just one day last week and trying to increase to two days this week. He ended up staying for 2.5 hours and that was enough to wipe him out for the rest of the afternoon. He was really excited about going back and seeing his friends and his teacher!
Malachi is in the Comprehensive Development Classroom (CDC) which has varying disabilities that span all elementary grades. There is a main teacher, several parapros in the classroom to help with the students, and a nurse assigned specifically to that classroom. I feel comfortable with the staff in the classroom and I know how much Malachi enjoys being independent and away from mom. They sent me this sweet photo while he was there.
This week has been difficult as we have been navigating potty training with Levi which has been brewing some major emotions and jealousy from Malachi. I have been very cautious about the words I choose to inspire Levi to pee on the potty, avoiding phrases like ”big boy” and negative references to being a baby because of diapers.
Whenever we talk about the topic Malachi starts signing ”No” and gets agitated. We have been trying to make it fun for him too, giving Malachi a mini M&M for each time Levi successfully pees on the potty and gets his M&Ms but it doesn’t seem to be curbing the jealousy much.
Levi has also been asking very specific questions about Malachi being potty trained and asking when he will walk. We have been trying our best to explain that Malachi might just get to take his first independent steps on the streets of gold in heaven. That leads to even more questions from Levi and we have been doing the best we can to try to answer them in an age appropriate way. I took a sweet video this week to share with you all:
The Bible is going to so alive for Levi as he grows up. What a hidden blessing. And little brother was awfully excited to pick up Malachi from school.
One night this week Levi fell asleep on the couch doing ”Me devotions”. Sweet boy.
I have been trying really really really hard to keep a positive outlook this week and while the struggle is still very real, I seem to be in a better place. The continual sleep deprivation continues to be my biggest hurdle. Jake gets a fall break a week from Monday and we are looking forward to having him home for a bit.
We have been able to get a few pieces back to our schedule this week that existed in our lives pre-hospitalization. Having those pieces back just feels right. High school girl’s soccer, youth group, men’s Bible study, family Bible study…we challenged our energy levels a bit trying to catch up on all of the life pieces we had to lay down or not give 100% to over the last few weeks. It is exhausting but oh so wonderful.
When I have the responsibility of teaching the youth I tend to be plugged into the word way more often to plan our discussions and lessons. It feels like I am drinking a cold glass of water on a hot day! It is so soothing to my soul to open up a physical Bible again and look for the things God wants to teach me through His word.
This week we tackled the misconception: ”Since evil and suffering exists, a loving God cannot exist.”
I could type for hours attempting to answer this question but that is not the route I feel I need to go. But I do want to touch on suffering.
Obviously the concept of suffering is a theme in our lives, but a relationship with God changes the disdain we have for suffering. Now don’t misunderstand me- suffering isn’t pleasant and watching my children suffer is more difficult than words can describe. But I also recognize the many ways that repeated moment of suffering have rooted my faith in God.
Ecclesiastes 7:4 “The heart of the wise is in the house of mourning, but the heart of fools is in the house of pleasure.”
The amount of godly wisdom we can gain in our sufferings is staggering- but we have to be willing to have eyes that search for those glimmers of faith building moments. God increases our wisdom each time we go through these trials, strengthening our faith to be ready for future attacks from the devil.
I explained to the teens that we are called to be good steward of our suffering. Those moments of sadness, mourning, and discomfort have the ability to brew a magnificent testimony that words without experience can’t create. Suffering creates a natural gospel story in our lives to tell others.
Too often we let our self-centeredness take over and convince ourselves that our suffering only affects us, when in fact our suffering can become a wide net reaching others and allowing them to spiritually grow alongside of us (sometimes during but most often after).
Have you been a good steward of your suffering? Have you allowed that part of your story to become a part of the testimony you share with others? Our spiritually refining moments can have a profound impact on the people we allow to peek into the windows of our lives.
John McArthur says ”True wisdom is developed in the crucible of life’s trials.”
I think back to all of the wisdom I have gained about the character of God by watching very hard things manifest in my life.
Sometimes the pruning God intends for us is painful, but in the end the purpose is to produce more and more fruit in our lives.