Covid has spiked in our area, shutting down schools for the entire week and keeping us from feeling comfortable venturing out much. Thankfully we are all healthy and well and have enjoyed the extra family time together!
Not too many exciting things to report this week but we are headed into a pretty full week of medical appointments for both of the boys. Bright and early tomorrow Levi sees the eye doctor followed by the neurologist and some blood work. Prior to the 2020 Covid shut down Levi was regularly seeing the eye doctor for several eye conditions. He has had eye surgeries attempting to correct some of the issues but we had exhausted all avenues for correction until he was old enough to start verbalizing things to us (per the eye doc). We were still going for routine check ups but when Covid hit hard they indefinitely canceled the appointment.
I have been avoiding taking him back, not sure that I am fully ready to hear any potential discouraging news. To be honest, there hasn’t been an eye appointment for Levi that hasn’t ended with me in tears in the parking lot. Last time we went the doctor noticed that his brain damage was deteriorating his optic nerve in his left eye and he was slowly losing his vision in that eye. That is a condition that can’t be reversed or repaired.
At that point his vision issues and his cerebral palsy in his legs were the only indicators of his brain damage. Now that he is also having seizures I feel like I have crossed over the threshold of disappointment and have started to accept where we are truly at with him. Overall he is doing so incredibly well and you wouldn’t know that there were lingering medical issues with him if you were to meet him in person. And for that I am grateful.
In the last week he has started squinting often, like his eyes hurt. I have been watching him closely trying to figure out if it is involuntary or something he is doing on purpose but I can’t figure it out. I am thankful that we already have an appointment in the morning, because this new squint would have definitely prompted a phone call.
This will be Levi’s second trip to the neurologist since his seizures started during the week of Christmas. He seems to be doing well at the top dose of medication but we will need to check his sodium levels to make sure they are in a safe range. We have been “practicing” blood draws all month so I am really hoping he will be able to handle it without too much panic.
On Tuesday we will head back to the hospital with Malachi to meet with a pulmonologist for the first time; we already have a great relationship with Levi’s pulmonologist in Chattanooga so we are going to start taking Malachi to him. With his recent oxygen needs I want to make sure we are communicating with a professional on a regular basis- it makes hopsital stays a bit easier when there is a point man on board that knows him well. I am also going to see if we can get a prescription for a cough assist machine for home to help when respiratory issues arise.
The temperatures here have been lower than normal so we have been stuck inside and are all about to go a little stir crazy. I took both of the boys to horse therapy but Malachi couldn’t get his core temp back to normal for a full 24 hours after.
We played lots of family games and lots of movies! Malachi’s tastes have been changing as he gets older and while he enjoys his musical movies he is also starting to enjoy a good plot line. We have been defaulting to some of our childhood favorites and have been hit or miss. He usually tells us within the first ten minutes if he wants to keep watching. Homeward Bound was a smashing success.
Little Levi loves doing chores around the house. He takes a lot of liberties when he is doing them, like emptying the dishwasher and putting all of the dishes away. This week he attempted to clean the toilets for me (we can collectively cringe at that one). Some of the Levi chores are most definitely creating more mommy chores but I applaud his servant’s heart….mostly.
He has also been making his own food creations. This was fried rice with yogurt on top. And yes, he ate several bites which was hard for me to stomach. But considering a year ago he wasn’t able to eat much of anything, I will take yogurt fried rice. I may dry heave a bit, but I will take it.
My devotional thought tonight is an odd one. That’s always a fun preface huh. I find myself hesitating to talk about death with you all as I recognize that our viewpoint is so very different than the world’s.
But I’m feeling like throwing caution to the wind and sharing my unmasked heart with you. Be prepared for rambling.
Just before midnight on Thursday evening I felt the ground underneath me shake. Sometimes the military sends its pilots out to practice on the mountain range by our house at night so we are used to random planes low flying (like very low) over our house in the darkness. They cut out all the lights so you can hear it but not see it until it is on top of you. It is spooky but really neat at the same time. We have lived in this county for 13 years so it is old news.
But let’s sidebar to tell you a quick funny story. Back when we lived in our log cabin the concept of these military night flights was new to us. I remember one night hearing something and Jake headed to the kitchen to look out the back door. He saw the low flying plane and was convinced it was heading towards the house and laid flat on the floor, bracing for impact. Of course it pulled up before it made contact with the cabin and all was well but I ran out when he screamed to find him laying face down on the kitchen floor in terror.
So back to Thursday night. The floor started shaking but I didn’t hear the typical plane noise. And the shaking continued longer than a normal plane shake. After several seconds of this movement I realized we were having an earthquake! I ran into the bedroom where Jake and Levi were sleeping but by that point they were already awake from the shake. Malachi was mesmerized and all people and property were completely okay, so no worries there.
But the whole incident fascinated us. It was a 3.1 magnitude which is incredibly minor but when you haven’t physically felt one before it seemed like a big deal. We all calmed back down and the boys all went back to sleep but I couldn’t stop thinking about the shake I felt under my feet. Biblically there have been so many significant earthquakes, but the ones that Christ mentions are yet to come are immediately what my mind went to.
And while some were talking about the temple, that it was decorated with beautiful stones and vowed gifts, He said, “As for these things which you are observing, the days will come when there will not be left one stone upon another, which will not be torn down.” They asked Him questions, saying, “Teacher, when therefore will these things happen? And what will be the sign when these things are about to take place?” And He said, “See to it that you are not misled; for many will come in My name, saying, ‘I am He,’ and, ‘The time is near.’ Do not go after them. And when you hear of wars and revolts, do not be alarmed; for these things must take place first, but the end will not follow immediately.”
Then He continued by saying to them, “Nation will rise against nation, and kingdom against kingdom, and there will be massive earthquakes, and in various places plagues and famines; and there will be terrible sights and great signs from heaven. “But before all these things, they will lay their hands on you and persecute you, turning you over to the synagogues and prisons, bringing you before kings and governors on account of My name. It will lead to an opportunity for your testimony. So make up your minds not to prepare beforehand to defend yourselves; for I will provide you eloquence and wisdom which none of your adversaries will be able to oppose or refute.
When I read that scripture I feel my spirit quicken within me, excited about the words on the page. Yes, there is so much devastation and suffering but intertwined in the chaos is such beauty and connection with God.
Before having Malachi words like these still scared me a bit as I feared the unknown. But now that my eyes are locked heavenward as I think about Malachi’s healing, I can’t help but find myself longing for those days.
There is a song called “Christ Be Magnified” and its words paint such a beautiful picture…
I won’t bow to idols, I’ll stand strong and worship you
And if it puts me in the fire, I’ll rejoice ‘cause you’re there too.
I won’t be formed by feelings, I hold fast to what is true.
If the cross brings transformation then I’ll be crucified with you.
‘Cause death is just a doorway into resurrection life
And if I join you in your suffering, then I’ll join you when you rise.
And when you return in glory with all the angels and the saints
My heart will still be singing, my song will be the same.
Malachi has taught me that death is just a doorway. And as I reflected on our midnight earthquake I felt my heart longing to experience the beauty of heaven with my boy. Not in a creepy death wish sort of way, but just a overwhelming joy of what is to come for our family.
But really take a minute and reflect on that scripture, particularly this verse: “It will lead to an opportunity for your testimony.”
If you are a child of God you have been given a testimony. So often we try to rate our own testimony against someone else’s, convincing ourselves that ours isn’t exciting enough or as layered as someone else’s. But that is the devil trying to silence the transformation God has done in your life.
But this verse tells us that in the midst of potential persecution in our lives there will be an opportunity for our testimony. This is such a powerful picture to me!
And the next command from God is so countercultural… “So make up your minds not to prepare beforehand to defend yourselves; for I will provide you eloquence and wisdom which none of your adversaries will be able to oppose or refute.”
So often we try to prepare what we will say or what we will do. But God is specifically telling us to not prepare and to let Him speak through us in that moment. What a beautiful moment to be a mouthpiece for God.
My prayer tonight is that God creates these opportunities now in our lives. I pray that He gives us the boldness to share, even when facing persecution. And I pray that He speaks through us, allowing the moment to not only impact the hearer but the mouthpiece as well.
Death is just a doorway. Does that thought bring you excitement or fear? If it is the latter it may be time for you to make a change in your life!
Please be in prayer for our family as we tackle some emotionally challenging conversations this week with doctors. And for continued health for our warrior boys.