“I’m so glad I live in a world where there are Octobers.” -Anne of Green Gables by L.M. Montgomery
I am a fall loving gal. There are so many things that I love about this time of year, but one of the main things I enjoy the most is the constant reminder of our amazing God in all the colors. I catch myself praising God more in the fall as I can’t help but notice His handiwork. This week I rolled down my car window and snapped this shot on our road. Not an award winning photo, but just a glimpse at the beauty that helps refocus me each time I leave home.
I am so thankful that there are Octobers.
On the flip side, one of the unwanted things that fall always tends to bring with it is a spike in illnesses. Last week Malachi ran off and on fevers but leveled out by the weekend. I was so thrilled to be through the threat of a serious illness. But this Wednesday rolled around and Levi started acting a bit off. Sure enough a full blown head cold hit him and we passed it around the family, Malachi being the final one to get it.
Malachi does not handle any drainage well and it typically increases his seizures. His brain can’t handle the extra stimulus and it is very hard to shut it off to get him to rest. He has been staying up until 4am each night, wrestling with seizures during the bedtime process, and only sleeps for a few short hours, waking up with yet another seizure. We need these germs to move on so his system can reset a bit.
Caregivers aren’t really allowed to get sick. Of course that isn’t really possible, but we have to pretend like it haha! My coughing at night sparks Malachi’s seizures (the cough surprises him).
I am so thankful that this sickness isn’t impacting his oxygen levels! We have not had to use supplemental O2 at all and his cough assist machine has been incredible at getting his lungs some extra clearance. And Levi handled this cold like a champ. His airway inflames with sickness, bringing his paralyzed cords closer together. I always know he is sick before he tells me due to his noisy breathing. But he back to his normal, silly self.
We spent most of the week at home trying to keep a close watch on everyone’s health. On the nicer days we headed outside for some chores and fun. The boys worked together with the leaf blower to clear the driveway. Malachi held the machine and Levi pulled the trigger.
If you don’t know, changing Levi’s g-tube has become a pretty emotional experience for him. I changed it during his recovery after his last surgery before he woke up from anesthesia, but we are supposed to change them out every three months on both boys. I check the water level in each boy’s balloon each week (the stopper on the end of the g-tube; think of it as the back to an earring) to make sure it is still holding water. Levi’s began losing a bit of water so I have been watching it closely and this week it popped. The process to change it isn’t difficult or painful but the mental and emotional roller coaster is the real deal for him. We had the best change out ever and I was so proud of him! Then by the next morning the new tube popped too and we had to do it all.over.again. It must have been a defective one, but poor little Levi was a mess.
This weekend our church held our 2nd annual Holy Ghost Wiener Roast! This is an event at our friend’s farm that we invited the community to and boy did they show up- several hundred of them. Jake and I were in charge of the event so we spent most of the week doing Walmart pickups to try to gather all the necessary things without going into any stores and sharing our germs with others.
On the big day Malachi had been doing much better and we felt like he would enjoy the adventure out of the house. And he loved every minute of it.
Most of the week I stayed in survival mode, running on very little sleep. Weeks like these can be difficult on my psyche with not a lot of distinction between days and nights. Often the hardest chunk of my day is the midnight to 3-4am one. It is relatively uneventful but the seizures keep me from being able to commit my brain to other things.
Each year I try to come up with fundraisers to help send our teens to youth camp. I despise fundraising in the traditional sense- selling overpriced things that people don’t truly want but feel pressured to purchase. So we try to find something different to offer that people might actually want to purchase that will yield a large profit.
This year we have several projects that we are working on and I have been tackling them during that difficult bedtime chunk in between seizures. I have to be honest- the distraction has been wonderful. The ability to control something….to start something and see it to finish….is something that I crave.
A buddy of ours donated some cedar slabs and I have been cutting them and sanding them down to make hymn plaques. As I worked on this one in the very late hours one evening I couldn’t help but stop and focus on this one.
The longer I worked with this piece the more I connected with it in such profound ways.
There are so many imperfections- the cut, the shape, the splinters. This particular piece broke apart from the other half when I put it in the car, revealing a pink wood flesh that I never knew existed. It was this particular broken board that continued to catch my eye as I looked at the pile of scraps, struck by the beauty in the fresh flesh of brokenness.
The story of this slab of wood is rich, and even though the surface has been sanded flat you can see the remnants of its journey on the edges.
As I sat and stared at this piece I couldn’t help but see our journey in it.
So incredibly and beautifully imperfect. And one of a kind.
We have cracked on the edges, breaking away from dreams we once clung to. We have been broken in so many ways, revealing things deep within us that we didn’t know existed. And as painful as those breaks can be they took the piece from weak and fragile to incredibly strong. Watching God bring His strength into our family has been such a gift.
As I worked with this piece I came to the realization that this one was not meant to leave our home. And as I tried to choose a hymn to put on it I easily settled on this one. Although this is not scripture, there are so many spiritual truths within it.
The song “It is Well with My Soul” was written by Horatio Spafford in the late 1800s. Horatio lost his four year old son to sickness, which alone is such a tragedy. Two years later he sent his wife and four daughters on a trip, intending to meet them there at a later time. That ship hit another vessel and 226 passengers lost their lives, including all four of his daughters. His wife survived and sent him a telegram with the words “Saved alone”. Shortly after, Horatio wrote this famous song.
My favorite line from the song:
“Whatever my lot, Thou hast taught me to say, it is well, it is well with my soul.”
Our circumstances are ever changing in this life. But a soul truly rooted in Christ cannot be shaken.
Please pray for Malachi, that he will be able to bounce back quickly and level out to his baseline. Recovery from the common cold has been taking at least two weeks for him and I know that process wears out his little body. And please pray that I am able to keep my eyes focused on God through the harder moments in our week.