Saturday, November 5, 2016

Here We Are

Yesterday evening right after I got home from my day in town and was putting my groceries away, Lily called and her voice was very quiet and very sad.
"Owen's doing that thing again," she said.
That thing being what was probably a seizure like he'd had over a month ago.
My heart dropped so fast and so hard. Somehow I'd known that something was going to happen yesterday. I felt it in my old bones.
"Are you going to take him to the ER?" I asked.
"I don't know," she said. "They couldn't do anything last time."
And this is true.
We've taken him to the neurologist since then and they did an hour long EEG but we haven't heard back from them and you know, being human and all, we've just sort of gone on with our lives, hoping that the incident was a one-shot deal, a mystery to leave to the ages, no harm done, etc.
Plus, you know- strep, almost-cut-off-fingers. Life.

But. Here they were. Here he was.

I said, "I'll be there in a minute," and I slammed the refrigerator door shut and got back in my car and was at Lily's house in just a few moments. I walked in to find Jason holding Owen on the couch. The boy was wrapped in a quilt and still but he reacted when I walked into the room although he didn't know exactly who I was. But he smiled. Lily was on the floor beside them, holding Owen's hand and nursing Maggie.
And we discussed going to the hospital which is what they'd done last time this happened. By the time they'd gotten to him, he has been coming back to himself and all of the bloodwork they did, all of the testing, the CT scan- none of it showed a thing and they just suggested an appointment with a neurologist, which is course what Lily did.
And so, we decided not to go to the hospital. Slowly, he was coming back to himself (I know I keep using that term, but it is just the only way I can find to describe it) and the idea of taking him to the brightly lit ER where they wouldn't really have the means to figure anything out just seemed cruel. We waited.

Eventually, he was Owen again, fully present and knowing everything he knows. He knew he'd been through something but he couldn't remember how it began or anything else about it and didn't really seem to want to talk about it.
Lily finally got to talk to the on-call nurse at the neurologist's office and she recommended they just keep Owen as unexcited as possible this weekend and get back with the doctor on Monday which was good advice.
I talked to this blog community's resident expert on all things seizure and she was calm and reassuring and helped more than she can know.
We talked to Jessie, who is a nurse, and to Boppy, who is in Georgia. Everyone so worried, but calm.

And thus, before long Owen was playing with his sister and his brother and we all took deep breaths and eventually I left and came on back home where I got in touch with Uncle Hank and with Aunt May and made a martini and put the chickens to bed and Lily sent me that beautiful picture of Owen with his sister who was eating spaghetti and she sent me that text, telling me that I can write about this if I want and how this community is always so helpful and uplifting to her.

So you know I'm crying right now.
It is the most beautiful day ever. Owen and Gibson had their last football game today and although Owen didn't play, they all went and Gibson did play. I got these pictures from Lily.

There will be no going to the fair this weekend or the Fall Festival at Owen's school either (the bouncy house- the excitement!) but that's okay. His daddy said they could draw together, which they love to do, and read stories. Maybe tomorrow they'll come over for pancakes.

The sun is shining and it's coolish, the zebra-winged butterflies are drifting about the firespike blossoms which glow crimson in the light. The leaves on the trees are glittering like gems in the breeze and the sun, and the chickens are scratching about the yard. I'm going to work in my garden today, I am going to remember to breathe and have faith that all will be well and that our darling boy is going through something that so many children go through and I know it's not going to kill him and that he is in the best possible family who love him and hold him up that he could be in. We will get it figured out.

There. That. This.

All love...Ms. Moon


  1. Wrapping you all in gold for protection with extra layers for Owen. I know you are all taking the best care of that beloved boy. Good idea to ground yourself in the garden. Sending hugs. x0x0x0x0x0 N2

  2. Just throwing this out there, for what it's worth:

    When I was 14 I had a grand mal seizure out of the clear blue sky. It scared my parents to death. It turned out that looking at a strobe light had caused it, "photosensitive epilepsy" they called it, and said that a fair number of young kids have it and sometimes it's triggered by a tv show or video game. They said I might grow out of it, or I might not, but to avoid flashing lights and I'd be ok.

    Twelve years later, I was shopping at Walmart one day, felt extremely dizzy, and woke up in the hospital. Yep, I'd had another seizure. I had all manner of tests done, and they couldn't find anything. I will say that right before BOTH seizures I was a day away from getting my period and on the day of my second seizure I had been having terrible allergy attacks (seasonal allergies). The neurologist explained it to me this way: ANYONE can have a seizure under the right set of circumstances. Sometimes people who don't really fit as having full blown epilepsy are a bit closer to the "edge" so to speak and will have a seizure a bit faster than average. He said he saw lots of first time seizures in college kids during exams due to missed sleep, excessive caffeine, and stress.

    The point of this story is to reassure you that it's entirely possible that Owen is simply one of those people who are slightly more prone to having a seizure for whatever reason and it doesn't necessarily mean anything truly frightening. After my second seizure my neurologist put me on medication for a few years but it had terrible side effects so I gradually quit taking it. I didn't see the justification for it after only having had two seizures in my (then) twenty-six years of life! And I'm happy to report that I still haven't had another one, and I'm 41 years old.

    I'm sure the doctors will find the cause of Owen's episodes if there is, indeed, any find-able cause. Sometimes there isn't.

    I'm sure your sweet Owen is going to be just fine. :)

  3. The image of Jason holding his son wrapped in a quilt and Lily at their feet feeding Maggie and holding Owen's hand, and Owen's smile when you walked in, it is almost unbearably intense in its beauty and lovingness and connection. And also: the way Maggie is looking at her brother in that picture, protective beyond her years. Please let Lily know that yes, I am lifting up Owen and your whole family in my thoughts. I am sending so much love. No matter what, all will be well. in the meantime, don't forget to breathe.

  4. i hope they can get to the bottom of this quickly for everyone. sending love, light and the power of science <3


  5. Did you call Elizabeth? Maybe she can be of help to you? I will do what I do for your boy in keeping him in my heart and soul. This makes me sad to the core. I love my little Owen. I'm sure he will be ok. I'm glad he will be going to the dr on Monday. Love to everyone

  6. That look in Maggie's eyes is precious. This little family is the definition of Love.
    All of your grandchildren are very special to me, and Owen even more so because of being the first. He will be fine. I think like Jennifer, it is just a passing thing that people get sometimes. But I am sure thinking of him and his family with Love. And of you too, dear Mary.

  7. Beautiful Owen has family who know how to be there for each other, in spades. Sending good thoughts to all of you!

  8. How well Owen is cradled in the golden love of his family... The online community here adds a gossamer layer around that cradling. I add my warmth of thought to it and have hope that all will be well with Owen, wonderful lad that he is. No doubt he will carry on as fully engaged as ever, no matter the final diagnosis. Hugs, Carroll

  9. How scary and how weird it is to be human and in a body that does its own thing, good or bad, from time to time. When I was younger, I would have episodes where I could feel the world going away, small as a pinprick, and then "wake up" some time later.

    I hope Monday yields some answers. And I'm sending all of you love and light.

  10. Oh, you guys. I hope it's not epilepsy. One of my daughter's friends said her son had odd sort of ... absences? But I don't think it came to anything. I wish I had advice for you. I agree, the ER isn't the answer, but further checks/monitoring obviously is necessary - even if the specialist hasn't found out exactly what it is yet. Did they say what they think it is?

  11. Sending healing thoughts his way. Sending loving ones to you and to the rest of your amazing family.

  12. My son was formally diagnosed with epilepsy when he was 13 years old; prior to that, he would have "episodes" that I am betting are similar to what Owen has been experiencing. My son is now almost 20 and doing wonderfully. It has been a long road, and one that Connor deals with, every day, with exceptional grace. I am sure you have spoken to Elizabeth for her input but keep me in mind. I will be thinking of you and Owen and Lilly, and sending good thoughts!

  13. I have to admit that I read this post hours ago, but I couldn't comment because I was so upset. It's like those sweet babies and grandbabies of yours belong to all of us! When I was four I had what the doc's described as a seizure (from my parents' explanation). It was more like I kind of zoned out for a bit. I don't remember it, but I had another when I was 14. I remember hearing people's voices like they were speaking through running water. I don't remember feeling sick, or having a headache or anything. It lasted less than five minutes, but I felt a little sluggish afterwards. I forgot what the doctor called it, but he said it was nothing to worry about unless I had more. That was 46 years ago and I never had another. I hope this tidbit is reassuring to all of you, and please know I'm keeping Owen and Lilly, and heck, the whole lot of you in my thoughts!!

  14. Oh, Mary. This is so frightening. I wish I had some helpful words. Sending all of you love.

  15. As the "resident expert" (and I'm grateful to you for calling me that), I second all the wise and knowledgeable comments here and will lift Owen up and hold him in my thoughts. May he be well. I hold Lily especially, though, in my heart because let's face it -- I know EXACTLY what she's going through and it's -- well -- I just KNOW. I love you Lily. It will be ok. Honestly. It will be ok.

  16. I don't read well, of course you contacted Elizabeth...

  17. I'm here in MN with leaking eyes loving that boy and Lily and Jason.

  18. Many positive and loving thoughts are being sent to sweet Owen, and all of your beautiful family. All will be well.

  19. Thank you everyone. I knew that people would understand how we are feeling and think of us. I read all your comments about my children and know you have grown to know them. I am frightened for what the future holds but hopeful it won't be something too bad.

  20. well, fuck. so scary when you don't know what is going on and the so called experts don't have a clue.

  21. Oh, man. I am so sorry to hear this happened again. I hope it proves to be something minor and transient. I must admit my reaction is complete bewilderment -- I don't have experience with seizure disorders but this doesn't sound like seizures as I understand them. I just wonder what the hell is going on. Anyway, you're all in my thoughts.

  22. I too read this yesterday, I am sorry this is happening. I am sending healing thoughts to Owen. Gail

  23. Holding you all in my thoughts and sending love beams. Owen will be well. Being surrounded by so much love and light, how could he not be?

  24. I'm late reading this - I'm sorry you are all going through this. There is NOTHING worse than something happening to our kids. Thinking of you all.

  25. So sorry to read about Owen. I am hopeful that all will be okay for him. I know how it concerns you though. Take care.

  26. <3 x a million. So scary for you all. Owen is the best kid I've never met. I adore him through you. Will be uplifting all of you in my thoughts over and over.


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