This week started with a Monday full of appointments. The boys see most of their specialists together, with the exception of neurologists. Malachi has been diagnosed with intractable epilepsy (uncontrollable, multiple seizure types) called Lennox Gastaut Syndrome and sees a neurologist specialized in epilepsy called an epileptologist. Levi just has one seizure type that is controlled right now so sees a different neurologist.
Levi’s neurologist also saw Malachi before his seizures progressed so he is very familiar with our family. He has also watched Malachi grow up and knows his norm well.
When he walked into the room his eyes immediately went to Malachi, who was grinning from ear to ear. As the appointment continued he kept his curious eyes on Malachi, which made me wonder if he realized we were actually there for Levi…a theory that I quickly debunked.
The appointment ended and before he left the room he turned around and said “This is the most engaged and interactive I have ever seen Malachi. He seems to be doing really, really well today. What is he so excited about?”
I laughed, because the truth of the matter was that Malachi was THRILLED to be at an appointment that wasn’t about him. He smiled from ear to ear the whole time. And to add to the drama, the doctor told me that Levi needed bloodwork. The fact that Levi had to get bloodwork done instead of Malachi was a first and set him into giggles (much to Levi’s dismay).
The blood lab employees know Malachi well and as Levi screamed during his draw Malachi just sat in his chair and smiled smugly. The phlebotomist turned and said “Are you just happy it is him and not you?” To which Malachi avidly signed YES.
And as you can imagine, Levi’s blood draw was pretty traumatic. The seizure medication he is on can cause his sodium levels to dip low so we have to do routine draws. Unfortunately they called a few days later to let me know that his sodium levels are in fact too low and they asked us to do another blood draw in the next three weeks before we make a plan of action to get those levels normalized.
Shhh….don’t tell Levi. Or Malachi.
The brotherhood of these two continues to be the highlight of each day. Malachi is getting more and more mischievous. One afternoon Levi feel asleep on the couch next to Malachi and I. I leaned in and whispered to Malachi “Be very quiet, Levi is finally sleeping.” Malachi smiled and proceeded to shout at the top of his lungs, trying to wake him up. Little stinker.
And Levi’s heart of inclusion continues to grow. This week he keeps scooting Malachi all over the house to be close to him. He pushes him to the entrance of the play room so they can play together, putting Malachi in handcuffs and taking turns being the policeman/firefighter/ballerina/magician.
Soccer season has officially begun, which is a family affair with the help of friends. Going to soccer games is one of Malachi’s favorite things to do as he loves the emotions coming from Jake as he coaches. And Levi loves playing with his buddies.
I can’t get past how much Levi has grown lately! He will turn 5 years old in just three short months.
This week is a big one as Malachi and I prepare for our Nashville trip. To say that he is looking forward to it would be an understatement. There is a medical side to the trip as we meet with Malachi’s ortho surgeon and his spine surgeon.
Last year his ortho surgeon mentioned the need for some more foot surgeries and tendon releases. I am really hoping it is something we can continue to put off, but regardless this appointment is to evaluate that, not actually perform the surgery.
His spine curve last year was 45 degrees and we are continuing to watch that for any major changes. Many kids with Malachi’s spasticity require major spine corrections in their lifetime, a surgery that is a BEAST and requires metal rods to be fused to his spine. This would be a very hard surgery for him and one we are not eager to have. But the body positioning can create pressure on the lungs and make it difficult for him to breathe over time. We are continuing to pray that Malachi’s quality of life can continue without these major interventions. While I don’t suspect that his degree is significantly different based on what I can see, these appointments take me down some difficult mental “what ifs”.
There is also a fun side to the trip each year as we make this a special mommy/Malachi trip. I let him choose the activities we do and he takes the role very seriously. This weekend I sat him down and presented all of the options to him and it took him just ten minutes to set our itinerary.
He wanted to watch a new movie so I pulled up the trailers to a few. When we finished the trailers I gave him the titles of the movies he could choose from and then gave him the multiple choice list, pausing after each one to allow him time to say yes or no. “Minions”? no reaction, “Super Pets”? no reaction, “Jurassic Park”at the hotel? Firm NO sign.
After we narrowed it down to two I started the list over again and again he sat stone cold faced, refusing to sign yes or no. I then asked “Do you want to see both of them?” And he nearly came out of his chair he was signing YES so hard.
He chose a few more activities to do, but his primary goal is watching TWO movies while we are there…which mind you is a 24 hour trip. I love his opinions and the freedom he feels expressing them. He also made sure I knew that he wanted a cookie while he is there. Last year he had a cookie and I guess that has become a tradition, because he has never EVER chosen a cookie over the other presented options.
He giggles every time I mention spending the night in a hotel. I can’t wait to share our adventures with you in next week’s blog!
Luke 9:62 But Jesus said to him, “No one, after putting his hand to the plow and looking back, is fit for the kingdom of God.”
In this scripture Jesus is talking specifically about the cost of following Him, and the level of commitment He desires in that walk. Too often we cling to pieces of our former selves and the mix between the hot and cold makes us simply lukewarm in our walk with Him.
I have been really thinking about this verse this week, trying to evaluate the ways in which I “look back”. What things from my past tend to catch my attention and slow me down in my current walk and work with God? What things are my eyes and memories drawn to?
And the answer that I have come up with has surprised me a bit.
My past is littered with hard things. Lots of rejection, lots of insecurities, lots of broken relationships. Then layer on the countless medical traumas with the boys and all of the memories that trigger from those events.
These stories in my past and these scenes that I can’t seem to forget are not in themselves sinful….but oh how they are so distracting! I can be plowing along and something will spark a memory and the emotions that come with it.
The devil can easily take our memories and use them to distract us from the work God is calling us to do.
Sometimes I find that I have created an idol out of my “victim moments”…moments when someone else’s actions truly hurt me. I cling to my hurt, feeling justified in it- and the world would absolutely affirm me in those feelings. But God calls us to a life that looks forward, not back as He called us to draw nearer to Him.
Yes, our testimony can be what God has brought us through. And the lessons we learned along the way. But there is also such a testimony in the plowing we continue to do for the Kingdom of God despite the distractions from our past that beckon to us.
“…forgetting what is behind and straining towards what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” (Philippians 3:13–14)
This week I am praying for focus. I am praying that I am able to fight the temptation to dwell in the past hurts and traumas the devil continues to highlight in my life.
Please pray for our family this week as we tackle another medical trip. Pray for Jake and Levi as they hold down the home front, and Malachi and I as we travel and meet with doctors. Pray that my heart is prepped to receive any potential hard news we may receive.