The Carrolls are healthy, happy, and on Spring Break! Levi and Jake both happened to have the same spring break at their schools. We plan to spend the week at home knocking out some projects and spending time as a family. It is always wonderful having Jake home and being able to take mental breaks from caregiving without feeling guilty. Malachi received tickets to Medieval Times for his birthday and we will likely take time to cash in on those this week as well.
All of our big medical appointments rotate; some monthly, some every three months, some every 6 months, and some every year. March is a delightfully boring month and the feeling of normalcy is very refreshing. In the next two weeks we will officially establish the dates for Levi’s Cincinnati summer surgery and then plan life around it. With Malachi’s Make-A-Wish trip in late May and youth camp mid June it is looking like a pretty action packed kick off for the summer.
Our indoor soccer ministries have ended and Levi is already talking about next season. Malachi looks forward to the league as well as he gets to help coach. We often let him participate in the drills and he always loves being included. This year I purchased a button whistle so he could push it to start the drills.
Life these days seems to be a continual pendulum of typical moments sandwiched with medically complex reminders. Levi has been dealing with what we assume to be seasonal allergies (typical) but they are making it extremely hard for him to breathe at night (not typical). I have been very worried about his breathing and spot checking him with the pulse ox at night to make sure he is safe. When he is aggressively working to breathe he burns more calories and also tends to gag and vomit more. We have had to focus more than normal on nutrition and hydration lately, pushing more nighttime feeds through the g-tube.
Malachi has settled into a new seizure routine at night that I could almost set a clock by. His brain is so fascinating. He is cutting some adult teeth which I suspect has something to do with the seizure changes.
He has been so happy lately and up to mischief. Earlier this week he pushed on his g-tube and popped it out, full balloon and all. I reacted briefly but then caught myself before I overdramatized the moment. Levi missed that memo and lost his mind that Malachi had popped his tube out. I watched Malachi’s face as Levi panicked and those eyebrows went up in amusement. I successfully got the tube back in, and Malachi went to work trying to pop it out again…hoping for the same reaction from Levi. A little brotherly love happening there.
This photo above is Malachi in his specialized car seat. It is a booster seat that has supports, but the best feature is that it swivels on a base so I can turn it to face the outside when I place him in it. From there I strap him in, swivel it to face the front again, and buckle him in with the seatbelt. The straps you see in this photo are for positioning purposes only, not safety. I am so thankful for inventions like this one that help make life a little bit easier. This photo was taken after his hippotherapy session this week.
Malachi has been very expressive and opinionated lately. And just so much fun to hang out with. Each morning he grins from ear to ear when I get in the car after dropping Levi off in his classroom. He loves our special time together. I took a video with him last week to share with you, and his eyebrows at the 30 second mark have made me laugh so hard I cry:
Malachi’s tastes have been changing a lot lately following the trend of a very typical 10 year old. He likes more complex movies and games, and like to be challenged by things. We play a lot of games throughout the day that I make up. The most recent one is a trivia game where I give him a quote and a multiple choice list of movies it could be from and he makes a guess. He is also wanting to watch movies with deeper storylines than the typical cartoons. Seeing these subtle changes is such a fun leg of the journey of motherhood with Malachi. Growth and progress, in any area, is beautiful to me.
Well, another blog entry wrapping up and all I feel like I have done is ramble about my kids! I think I am subconsciously kicking the can down the road right now, attempting to delay access the raw emotions that have been floating in my mind lately. I haven’t really processed what to write tonight so I am just going to start and let’s see where we end up.
If you asked me what one of the hardest parts is about being the mother of medically complex miracle boys I undoubtedly would have to say that it is controlling my thoughts.
We are in this war where our brains have to be engaged 24/7 (literally).
We are tasked with trying to control the uncontrollable.
To make every effort towards something we inevitably will fail at.
We can’t prevent suffering so we have to try to find ways to make it feel okay for our children and for our own hearts.
It is very easy to slip down a dark path of thinking, and I find myself looking over the edge at that path right now. But I have been down it often enough to know that I really don’t want to take that step and embark on it again.
So the way I deal with that? I deflect. I try to deflect all thinking other than the necessary. When I find myself venturing into dark waters I distract myself with something else to keep my mind from settling there. I am in a phase where I am scared to be alone with my thoughts right now because I feel my fragility. And I loathe vulnerability with myself almost as much as I loathe it with others.
But deflecting it is an utterly exhausting thing to constantly do. And I end up ending each day feeling so unfulfilled and empty.
I am due for a good, old fashioned embrace with reality. And, more importantly, an embrace with Jesus. It starts with me admitting that I am mentally, physically, emotionally, and spiritually unable to control my thoughts apart from Him.
2 Corinthians 12:9-10 “And He said unto me, ‘My grace is sufficient for you, for power is perfected in weakness.’ Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”
I have lost sight (as I frequently do) that this journey of motherhood is a calling from God. And through it I am able to do the work of God and be His hands and feet for my children. To love them the way that Christ does. And to allow His light to shine through the many cracks in this fragile earthen vessel.
Without the cracks that expose my weaknesses and my perceived vulnerabilities, Christ and His shining light through them would not receive the glory, honor, and praise of the hard that He has called our family to.
We were never called to perfection, but we are called continually to obedience. And when we live a life that pursues Him, when we are weak then He is strong.
So this week I am going to take time to embrace the weaknesses I keep trying to mask and hide from. I am going to confess my pride and arrogant attitude to the Lord, and allow my weaknesses to usher in His strength.
Vulnerability with the Lord is such beautiful worship.
In my quiet time with God this week I was reminded of the radical reliance we are called to have on Him. In the gospels we read about Christ sending out the disciples in pairs and His instructions to them were so specific: “And He instructed them that they should take nothing for their journey, except mere staff- no bread, no bag, no money in their belt- but to wear sandals; and He added, ‘Do not put on two tunics.’”
When I read this I couldn’t get my mind off of the last, very specific, instruction. Do not put on two tunics. I am a two tunic type gal- always wanting to prepare myself for what I might encounter- thinking that my work beforehand can prevent discomfort. But that is only my pride speaking.
Following God requires a level of trust that will make us uncomfortable at times. Just as these disciples sometimes we are called to things that we are not equipped or prepared in any form to do. But the faith that can grow from these callings with one tunic, a staff, and sandals can be life changing.
This week I am praying for the courage to do this calling with one tunic, relying on God to provide.
That was a jumbled mess. But I am praying that the Holy Spirit can speak a personalized truth to you within those words.
2 thoughts on “One Tunic”
Delighted as always to read your comments about your family, as well as your personal vulnerability and how God speaks to you.