And so, we deepen
A couple months ago, we noticed Oscar making a strange chewing motion with an accompanying squelching noise. At first, it was cute. Then, it was annoying. Then, it was concerning… kind of. It didn’t have any of the classic red-alarm seizure hallmarks. It was just there.
But it was there a lot.
We could stop it with a nap, or sometimes by feeding him, so we started assuming it was a wacky new “I’m needing some help here” signal. Sometimes it was clear he was just doing it out of boredom, or because it made his mouth feel good. He would chew a couple rounds and then burst out laughing, or chew a couple rounds then engage with his toy.
But every once in a great while, he would chew a couple rounds, drop what he was doing, tilt his head, and roll his eyes to one side. Then, almost before you could be sure you had seen it, he’d blithely continue whatever he had been in the middle of.
At our last appointment with the neurologist in November, she saw him do it with her own eyes. And her words were not terribly reassuring: “Usually I can tell one way or the other — that is a seizure, that isn’t. But this isn’t clear at all.” So we arranged for an outpatient EEG, which could be worn for 24 hours at home, and found ourselves in the bizarre position of hoping that Oscar *would* have one of these strange events, so that we could see clearly whether or not it was problematic.
In a bizarre and cruel twist of fate, it turns out that those chewing motions while he’s awake probably aren’t seizures at all. But, as it also turns out, he is having lots and lots of seizures in his nighttime sleep.
As I mentioned in my last post, when “deepen” appeared as my word for the year, I first struggled to fight back panic. I have a nagging suspicion/fear that Oscar’s story is not going to be a long, steady uphill progression, but a roller coaster.
This is the first test, really, of my newly restored faith. This is the first real setback since Lourdes. I believe now, in my bones, that Oscar’s story is completely in God’s hands, that God is in control and will order all these scary moments into a beautiful whole, someday.
Don’t I? I think I do. Right?
It’s easy to stay faithful when things are going well. It’s time to practice the other kind of faith again now, I guess, with deeper roots and clearer eyes.
We are tweaking Oscar’s diet and his medication, and we hope that will be enough to regain seizure control. He’ll have another EEG in a few weeks. And in the meantime, we pray, with faith, hope, and love. But the greatest of these is love.
The Lord gives, and the Lord takes away. Blessed be the name of the Lord.
Ed: I just realized today is the exact first anniversary of this blog. This is a weirdly comforting fact, in light of the above. I am back in the same place of uncertainty that led me to start writing in the first place, but I am not who I was a year ago.
Hang in there. You are certainly leaning the right way. I have a good feeling about where this leaves your family.
I love the version of “deepen” in Madeline L’ Engle’s books. The choice, against the freedom of youth, to become more. To be adult. Sometimes life slams you, but you still make the choice. A hard choice. You aren’t running away. You aren’t giving up. You aren’t drinking, drugging, spending, gambling, or otherwise masking your fear. You are living. You are loving your family. You are writing, teaching, sharing. You are praying, lifting, waiting, watching. You have chosen. I honor your choice.
Thank you, Rusty!
I am rereading A Wind in the Door right now, and am almost to the part about Deepening. Such Good and True books. Love her.
Thank you for being so open and honest. Your faith amazes and inspires me. Oscar and your family are in my prayers
Thank you for reading and commenting! It always makes me smile to see the names of old friends pop up. I’m glad we are still connected.
Thanks for keeping us updated on Oscar! I think that you’re absolutely right that his progress will continue to have its ups and downs, but in the end, God’s got a plan.
It seems obvious in retrospect, but I did really enjoy that brief delusional period where I thought everything might just be simple and well controlled from now on! 😂
I wish I could give you all the hugs!!! Even though we have hope in God’s plan, it can be such a struggle to get through the trials of today. Prayers for you and the rest of your family. <3
Thanks! You’re in my prayers too. I was happy to read about your new house today and hope it brings beautiful new beginnings for you all.
Here with you for the long haul, for the ups, and the downs too. ♡♡♡
My dear sweet friend – life is indeed a roller coaster. Do not lose faith or hope my friend. God is control and He is working ALL these things for your good. He will ask much of you and Oscar but He will give more than you can imagine my friend. So much more. We continue to stand with you in faith Friend and pray for wisdom and strength to walk the path ahead with grace. Love and prayers from VA ❤️
And we are with you, too! 💕
Thanks, Mary. Your encouragement from profound personal experience means a lot, as always. So grateful for the wisdom of those who walked this path before us. 💕
I prayed for your family a great deal over the holidays and I hope you found moments of grace and peace, too.