The short version:
Thank you for praying. Starting September 4, Isaiah started running a fever and feeling lethargic. The fever went away quickly, but the lethargy remained. A really rough 7-day span (of up to 5 seizures per night) followed. Thankfully, Isaiah has improved quite a bit over the past few days. His nighttime seizures have slowed dramatically, both in frequency and severity. He was even able to walk 1.7 miles at the Hope Choice Walk for Life on Saturday, which is remarkable. We're all feeling a bit more stable. Praise God.
The long version:
Our boy continues to inspire us daily. Things are hard for him. Talking. Walking. Eating. Writing. Reading. But, he continues to make one thing look easy...even though we know it is not: smiling. Smiling abounds. Hugs abound. That is not to say that he doesn't get frustrated. He most certainly does. There have been tears of frustration and embarrassment. It's just that he handles frustration (and bounces back from it) better than, well, most of humanity.
Medically speaking, not a whole lot has changed. We continue to work with his medical team to chart a path forward. The extreme rarity of his condition makes this challenging. Not many changes have been made to his medications (other than increasing dosage to match his weight gain). Additionally, he continues to make slow progress in various therapies, most of which are now done at home.
He's had over a hundred seizures this year. That, of course, is awful. However, he continues to come out of his seizures (usually without the help of emergency medication). Also, thus far he hasn't shown signs of cognitive decline.
I'd love to say that our days are easy, but that would be a lie. We are tired. We haven't slept through the night in well over a year. We still wake up to every toss, turn, and irregular breath coming from the bed beside ours. It doesn't get easier to watch your son battle a seizure. Each day is hard. But, each day is a gift. We've been gifted another year of smiles and hugs and unmitigated joy. For that, we are eternally grateful.
All that to say this: thank you for praying. I never say that lightly.
One more story.
Some friends of ours recently arranged a night of blessing for one of their daughters. We were honored to attend and pray with some friends who have become like family. I'm not usually one of those "God has given me a word for you" type of people; but I prayed for something encouraging to say. I thought to myself, "Perhaps there's something in our church lesson this week that is meant for her." So, I looked up where we were to be. It was the story of Ehud in the book of Judges: the left-handed Benjamite who stabbed a fat guy. My first thought: "Nope. I'm definitely not one of those 'God has given me a word for you' type of people."
Then, I studied it a bit more. Did you know that the Young's Literal translation of "left-handed" in Judges 3:15 is "shut of the right hand?" I didn't. But, that was interesting to me...especially since the name "Benjamin" literally means "son of the right." That would mean that describing Ehud as a "left-handed Benjamite" is akin to describing him as a "shut of the right hand, son of the right." Well, that's oxymoronic. To me, the meaning was immediately clear. Here you have a guy who, be it by disability or something else, was a lefty in a right-handed world. And, that's who God chose to use to bring 80 years of peace to his people. In fact, God used the very thing that made him a bit of a misfit--his left-handedness. That's an encouraging message for our friends' daughter who often feels like a lefty in a right-handed world. Thanks, God.
Why do I tell you that story? Well, I am confident that God led me to that little detail because he wanted to use that story to encourage our friends and their daughter; but there was more to the story. I didn't realize that there was more to the story until I glanced over and looked at Isaiah. That's when I noticed a detail...one of those details that you grow so accustomed to that you no longer notice it. Due to a loss of fine motor skills, Isaiah often holds one or both hands as you see in the photo: shut.
I needed that reminder. In the midst of the messiness of life, it is incredibly comforting to know that our son is exactly the kind of person who God uses to bring peace to people. If you've ever felt like you or your kids are lefties in a right-handed world, perhaps you need that reminder, too.
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