So sorry for the late post this week! I kept trying to write it last night but my brain wasn’t clear enough to formulate words. Right now there isn’t much of a day/night differential and we are working with fragments of sleep.
We have officially dropped a seizure med from Malachi’s regiment! This is a very rare thing in our world and something that warrants celebration. After a painfully slow titration we were finally able to stop the medication last Tuesday. We did have some breath-through seizures but he is down to only having at most 4 a day, and the ones he is having are so much more mild. He is still having nighttime seizures into the pillow but even those seem to be less aggressive than a week ago.
Almost immediately we saw Malachi’s personality come back. He started acting goofy again, something we haven’t seen much of since pre-surgery/liver failure in late July. His eyesight has improved dramatically and he has been more vocal. He is also trying to hold himself up more.
There is always a delicate line we waver on as special needs parents. Yes, I could continue to fiddle with medications and reduce his seizures a bit more. But in doing so I also “lose” my Malachi and his beautiful personality and joy. So we choose which sacrifices to make on his behalf, allowing his quality of life to drive our decision making. I catch myself second guessing nearly every decision that we make in this arena but in the end I see such happiness in his eyes encouraging us to continue on the path we are on.
Along with these amazing changes that we are seeing we are also seeing so. many. opinions. Malachi has an opinion about EVERYTHING. Usually we give him three options to choose from and he settles for one. But this weekend it was his turn to choose the game for family game night and it took us 8 attempts to get to the one he had in his head that he wanted to play. We finally said ”Sorry” and he signed YES YES YES!
He also got to go up the road for a movie date with the neighbor girls. One of the older girls narrated Star Wars to him; he will get to go back up for the second half of the movie soon. I think he was more excited about getting to go over there by himself than the actual movie, but having those opportunities and friendships for him is such a blessing.
I am still not sleeping much these days, so we didn’t get too adventurous this week. I spent the time at home continuing Levi’s potty training which keeps me ridiculously busy. That boy sure can pee….like 53 times a day. But his pure joy each time he successfully uses the restroom is so sweet to see.
Tonight we held our first annual ”Holy Ghost Wiener Roast” for our youth group and their families with the help of our very kind friends that own a farm. Levi’s anticipation for the event was so intense he could barely sleep. He has become so social and sees all of the teenagers as his own personal friends.
And Malachi is always game for a hayride and some time on the playground with friends. He loves to soak in the sounds, smells, and noises!
The holiday season is officially beginning and each year I find myself evaluating what it will look like for our family. It is so incredibly easy to let society dictate what our holidays focus on and look like. On that token, I heard a term this week and it has really pricked my brain.
If I am not being watchful and intentional I notice that we very quickly become passive participators in the world. And as harmless as passive participation may seem, it still makes us look a whole lot like the world we are not supposed to resemble.
As Levi gets older I find myself questioning my parenting choices on simple matters like Halloween. There is nothing inherently wrong with dressing up in costumes. There is nothing wrong with desiring free candy. But the Holy Spirit tells me that our family is supposed to look different from the world and nudges me that this an easy way to teach my boys about unfruitful things and the temptation to passively participate.
See that no one deceives you with empty words, for because of these things the wrath of God comes upon the sons of disobedience. Therefore do not become partners with them; for you were once darkness, but now you are light in the Lord; walk as children of light (for the fruit of the light consists in all goodness, righteousness, and truth), as you try to learn what is pleasing to the Lord. Do not participate in the useless deeds of darkness, but instead even expose them;
I believe so strongly that the devil is very hard at work during the holiday season, trying to get us to believe that the we are the center of the world. He shines a spotlight on our selfishness and whispers in our ear that this is ”tradition”. My heart desires so much to teach my children to spot those moments where we want to become ”partners with” the world like the verse mentions and instead ask what God wants us to do. Even when that means He calls us to be counter cultural.
I am not by any means condemning or judging any decisions you may make for your family! The Holy Spirit can speak differently to each of us, and I am not going to assume that the things He presses firmly on my heart are also being pressed on yours.
My desire in writing this is to encourage you to self evaluate and find the areas of your life that you have become a passive participant. Whether it be a habit you have convinced yourself is harmless, an activity that you participate in without a second thought, a friendship you continue to cling to…anything that produces unfruitful moments in your life or anything that encourages you to pursue paths that might be shadowed because their aren’t fully in the Light.
Spot them, name them, and replace them. Become intentional in your pursuit for the will of God in your life and your family.
For our family that includes questioning things the world tells me are traditions, rites of passage, and important. Holding them up to the Word of God and asking God specifically what He is calling us to do. What a special and serious privilege it is to raise children to be sensitive to the Holy Spirit. And oh how thankful I am for the grace of God when I mess up in this role!
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Praising the Lord for less seizures! Looked like you had fun with youth too.