This week we dealt with the typical post-sickness battles with Malachi. While the head cold we passed around was very mild, the extra mucus that it created for Malachi set him into some intense seizures each day. He has something called Lennox Gaustat Syndrome (uncontrolled epilepsy) and is having 2-4 seizures on a good day, which is down from his 8-10 he was having daily before his CBD oil. He had a pretty massive 4 minute one on Thursday and I started considering administering his rescue meds, something I haven’t had to think about doing for quite some time. We carry them with us wherever we go and when we administer those we have to call 911 as it slows his respiratory rate down a little too much. Thankfully he popped out of it without any intervention. By Friday morning I felt like he was stable enough to try school for the day.
A praise report though: Levi was the only one who didn’t catch the cold! That is such a blessing with his narrow airway and something that only the Lord could have orchestrated.
We canceled all but two of our appointments this week, which was actually pretty refreshing. We get into such a monotonous routine sometimes with therapies and having a surprise break of getting to sit at the house and rest was much needed. To give you some perspective, we still have 29 appointments/therapies left for the month of September. Just process that number…our medical schedule alone gets so overwhelming.
Despite the down time, we still had a few adventures this week! On Friday evening I had taken a solo trip to the grocery store and pulled onto our road at 9pm. As I came up the hill I heard the camera alarm go off on the front porch and assumed it was Jake coming outside to help carry in the groceries. But when I glanced at the camera I saw another very long black bear meandering by the front door.
When we built our house we designed the front porch to be an extension of the driveway so I could pull under the awning when it is raining to get Malachi out without getting wet. So I cautiously drove up to the front door and sprinted inside, asking Jake nicely to carry in the bags of food. I just feel like we are constantly being watched by the bears in the woods. It is such a spooky feeling!
Soccer is also in full swing- this week we have a game on Monday, Tuesday, Thursday, Friday and Saturday. That is insane! Malachi and Levi still love going to the games so we haul out lots of seating options for the kids, a small tent canopy, and enough snacks to keep Levi happy. By the end of the games Levi is usually filthy beyond recognition and exhausted which is a hidden bonus as he sleeps like a rock!
On Saturday Jake, Malachi, and I went to a friend’s wedding. We were worried that Levi wouldn’t be quiet so when our buddy Tanner offered to sit at the house with him we gladly agreed. We talked the adventure up to Malachi explaining that only big boys got to go to this wedding…no babies were allowed! He felt like big stuff and was extremely well behaved. The ceremony was outside and he got overheated a bit. Interesting fact about Malachi: he doesn’t sweat so his temperature can get a little dangerous. But much to Jake and I’s surprise he was dripping with sweat after the ceremony, so much so that it saturated his hair! I know it sounds crazy, but I get excited when things like this happen as I wonder if his brain is rerouting connections like we always pray for.
Levi has still been singing while he does just about anything. In fact, right now it is 11:00pm and he is laying in the crib next to me trying to fall asleep…just humming away. His speech is improving and he is adamant when he asks for something, like “Bubble” for Bubble Guppies. He has also been very eager to help with Malachi, like trying to put on his shoes and socks for him. He really has a sweet and tender heart. Here is another sweet video of him singing:
The mix of sleep deprivation and not feeling 100% took its toll on me and I found myself doing the most ding-batty things like putting the TV remote in the car. In addition to all of that, the fire extinguisher in the kitchen at the church had leaked all over the floor and as we investigated what the fluid was I managed to get some of it in me eye. It burned and kept me awake at night even though my body desperately desired the sleep.
This morning in Sunday School our teacher brought up a man named John Bunyan. I remembered the name from a book I read in High School called Pilgrim’s Progress but I didn’t know much of anything about him other than that.
John Bunyan was a preacher in the 1600s who was imprisoned for preaching the word of God, and during this time he wrote several books including Pilgrim’s Progress. He was given several opportunities to be freed if he would vow to stop preaching, but that was a vow his convictions never allowed him to make.
He had a wife and four children who clearly suffered during his time in prison from the lack of financial and emotional support from Bunyan. One of his children was born blind, and after reading a bit about her you can tell that they had a very special bond.
Bunyan said: “O I saw in this condition I was a man who was pulling down his house upon the head of his Wife and Children; yet thought I, I must do it, I must do it.”
When I look at John’s life I see something that a lot of us choose to look past when it comes to our walk with God.
For true separation from the world and a concrete unity with God, there will be pain involved. Obedience to God’s calling on our lives requires self denial and the desire to pick up your cross and carry it joyfully, seeing the beauty in the sometimes painful journey.
In The Excellency of a Broken Heart he says, “Conversion is not the smooth, easy-going process some men seem to think . . . . It is wounding work, of course, this breaking of the hearts, but without wounding there is no saving.”
There is a wave happening in Christianity today where people choose to focus on the loving attributes of God and not the hard stuff that He asks of us…the obedience and the sacrifice. Our human nature likes to focus only on the things that make us happy and assume that God desperately wants us to be happy- we don’t REALLY want Him to exchange our heart for one like His. We want to pick and choose the things that we like about Christianity and go all in for just the easy, natural parts like loving our neighbors.
But as Bunyan states, conversion is wounding work.
Is your walk with God challenging? Is the Holy Spirit actively working in you, wounding you by cutting off the branches in us that don’t bear fruit?
If there isn’t a little bit of discomfort and pain within your walk with God, are you truly seeking God and asking Him to refine you? To heat you up in blazing fires, to send challenges into your life that bring your impurities to the surface where He can scrape off that dross and remove it from our lives?
I know this is some really intense stuff, but it is something that has been on my heart so much lately. What has it cost you to follow Jesus?
2 Corinthians 5:17 says “Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.”
Have you said goodbye to your old self? Or is one hand grasping desperately to your old self while God firmly holds your other hand that is reaching for Him, choosing to be caught between two worlds that aren’t meant to coexist.
Please join us in prayer this week that God would send us our miracles. Pray also that He continues to give Jake and I a strength that defies all reasoning, and patience specifically for me when my mind is weary and my boys are not.