This week I asked Levi “Who is the strongest person you know?”
He thought long and hard about my question and finally replied “Umm Malachi!”
And oh how right he is. Malachi is so resilient and so content, even through some really hard diagnoses and trials. I am continually proud of the boy he has become. And knowing that Levi sees something so big and strong in his brother makes me so happy.
Now that we are doing in home therapies and tutoring with Malachi we have seen the need for Malachi to have a space of his own for these sessions. Levi tends to wander in and out and make the appointments all about him, which isn’t fair to big brother Malachi. For my birthday this year we had a barn door put on the opening of the therapy room and Levi’s rule is he can’t go past it during sessions. He still stands at the corner to peek at brother though and cheer him on.
I often get questions about how we know what Malachi wants or needs. One of the biggest blessings God has given us is found in Malachi’s ability to communicate to us without saying a word. He is very opinionated, but you have to take time to listen. More on that in a minute.
This week we headed to Chattanooga for Levi’s annual pulmonology appointment. He is seen by pulmonology in Cincinnati primarily, but followed by another one here locally in case something goes wrong and we end up in the hospital with him.
The pulmonologist was shocked at how much Levi has changed in a year. He is still wheezing a bit when he plays hard, and he is still stridoring when he is crying which tells us that the vocal cords are still paralyzed. But overall he is doing so great from an airway standpoint.
We will head back to Cincinnati this summer for his annual appointments and surgery there but everything seems to be staying routine for the moment.
We also started scheduling our other summer medical trips this week to Nashville. I usually am able to plan it just right that we can see all of Malachi’s orthopedic and spine surgeons on the same day, but now that isn’t an option so it looks like we will have a mini-getaway in between two appointments. I try to spread out the traveling summer appointments for sanity sake so we will aim to do Nashville in July and Cincinnati in June.
Levi has been really struggling with medical PTSD and the recent covid test he had to have made matters worse. In an effort to keep his crying to a minimum I bribed him with a trip to the zoo afterwards, which helped a bit. The boys were so excited when we pulled in, but once again the jaguars were sleeping on their platform instead of walking down by the glass. This is the second trip in a row they have not come down to Malachi’s line of vision and he was devastated. I tried to distract him by quickly going to another great animal but the tears started to flow and we ended up sitting on a bench and trying to get past the wave of sadness.
As we went through the rest of the zoo Malachi was simply mad. He was annoyed at the jaguars and decided he was going to stay in a bad mood so after a bit we loaded up and headed home. That afternoon Malachi stayed in his mood, yelling and being extra grumpy. This went on for hours, which was a first for him as usually he bounces out of bad moods quickly. When the attitude was still very alive and present by that evening I had a stern talk with him and told him if the zoo had the potential to ruin his day that we weren’t going to go anymore. His face immediately softened as he listened to my words, and when I picked him up to carry him to the car he squeezed me tighter than he had ever hugged me before. And then he was back to his normal bubbly self.
That whole encounter was so special to me, as it was the first time he had attempted an apology. I obviously made a big deal over the scenario, making sure to tell him how proud I was that he was choosing to not let a bad moment ruin his day anymore.
Levi has been into some major mischief this week. He knows when I am medicating Malachi that my hands are full and he can pull off some quick maneuvers.
The boys did get to have some more playground dates with friends this week as the weather was exceptionally beautiful.
We also spent some time this week on some very special play dates with some four legged friends!
Malachi was as tickled as could be!
Let me down quick Covid rundown before I jump into the next paragraph. Around the small town we live in life has not stopped. Sports are running as usual, schools are in session (students are unmasked), and churches are having normal services and gatherings. I know for many of you that is not the case and you may balk at some of the things we do, but be assured our decision to do them is driven by the Holy Spirit.
On Sunday evenings we open our home to the youth group. Before Covid hit our home we were gathering in the driveway or in small groups in the basement (separate outside entrance) so the teens wouldn’t be in contact with our boys or their living areas. Now that the kids have sailed through Covid, by the grace of God, we have gone back to opening the whole house to the group. We cook a large dinner and do a Bible study with them after they eat. As much work as it is, we really enjoy hanging out with them each week and speaking life into their hearts.
But tonight we kicked off a new adventure by opening our home for a family Bible study night. We had 9 families attend and had the chance to fellowship then dig into the Word with our families. Interestingly enough, the thought of having adults in the house instead of just teens made me overthink everything. Teens are easy going as long as you feed them decent tasting food. And Jake holds a men’s Bible study in the basement on Saturday evenings but I know they aren’t seeing dirty baseboards or spotty windows.
But as much as I desired to clean the house top to bottom, my energy level was completely shot. This weekend we also had an overnight youth girls retreat where I ended up staying awake most of the night with 23 girls. I snuck away to put the kids to bed but they boys stayed wired and awake until after 3am. Then there is that evil time change! I have been running on tiny shreds of energy today and cleaning the house found it’s way at the bottom of my list.
As I looked around the house today and managed to eagle eye spot every crumb, every spot on the floor, every tiny dried cheese shred from Levi’s wanderings. I started to re-prioritize my list which would have taken away from my prep time for the lesson. But immediately the Spirit directed me towards the story of Mary and Martha to remind that the devil can even use simple things in our lives to steal focus away from Him.
38 Now as they were traveling along, He entered a village; and a woman named Martha welcomed Him into her home. 39 And she had a sister called Mary, who was also seated at the Lord’s feet, and was listening to His word. 40 But Martha was distracted with [a]all her preparations; and she came up to Him and said, “Lord, do You not care that my sister has left me to do the serving [b]by myself? Then tell her to help me.” 41 But the Lord answered and said to her, “Martha, Martha, you are worried and distracted by many things; 42 but only one thing is necessary; for Mary has chosen the good part, which shall not be taken away from her.”
But only one thing is necessary.
That sentence is so poignant to me.
This weekend at the retreat our speaker focused on “6 True Points About Your Life”. I was so thankful for such a pertinent topic to these young girls; in the same way that I was tempted today to focus on the wrong thing, our teens today are often re-directed to things that don’t truly matter. Yes, we stay “busy” and sometimes even stay busy doing church-y things. But how often are we taking time to sit at the feet of Jesus and make eye contact with Him?
In this world we are constantly pursuing things that are of little importance. Titles, accolades, awards, notoriety. But as Christ reminded Martha, these things are not necessary. But connection with the Father is. It is in that connection that we find something the world can never take away from our hearts.
So this week I am evaluating my “necessary”. Our mind is exceptionally good at labeling things as necessary. Ultimately if something is trumping my time with God then maybe it needs to slide over into the unnecessary column. And recognizing and changing those misplaced priorities in our lives is itself an honoring gift to our God.
I had 100% intended to write about something completely different this evening, but I guess that is meant for another day! This momma is running on empty and is headed to bed. Thank you for taking the time to check in on our family.