Tuesday, January 31, 2017

How It Went


That picture was taken early this morning at Nemour's Clinic in Jacksonville. The view from the waiting room is absolutely gorgeous and Jason and Maggie were taking it in before we got called back to the exam room which did not take long at all.
Such a nice clinic. They even have volunteers come in to do crafts with the kids while they're waiting and today was make-a-Valentine day.

The drive over went fine, we found the hotel, we found a Chinese restaurant (Owen's choice, of course), we found a Publix. Both Owen and Maggie have the damn cough that Mr. Moon is almost recovered from and we needed cough syrup like nobody's business. Also, we'd lost Maggie's pacifier and that was not working out too well.
Anyway, we all got good sleep and had our complimentary breakfast at the hotel which was almost food-like and then we drove the few blocks to the clinic and made our way up to the 6th floor where the neurology department is.

We met our neurologist- a young doctor from Bombay and she asked us questions and had gone over Owen's MRI and his EEG's and she watched the video of Owen's last seizure. Owen was uncomfortable in the exam room, having people talk about him and when he said he wanted to go get some water, I took him out and we got water and then he made a Valentine, carefully choosing the proper pre-cut hearts and gluing them carefully onto the white paper for his mama. We went back in and of course I wanted to hear everything the doctor was saying and we stayed for awhile and the Dr. wanted to examine Owen, briefly, and ask him questions which he answered to the best of his ability. She said that yes, he has epilepsy, a very common kind, and that she is going to put him on a medication and the goal is control of the seizures at the lowest dosage possible.
She gave us basic safety tips- no climbing anything above three feet high, no baths without someone in the room, of course no swimming alone, a helmet and supervision when he is riding his bike.
Like that.

Owen began to get uncomfortable again and wanted to play "I Spy" which is what we'd done on our last visit to the clinic (and don't play I Spy with Owen because you will not win) and when we went out and he perched on that window sill to look outside and begin the game I said, "So, dude. You have something called epilepsy and that's what causes the seizures. A lot of people have this same thing and they're fine and you will be too."
"Well, that's a relief!" he said. "I thought I was the only person in the world who has seizures."
"The only person in the world?" I asked, astonished.
"Well, at least in the United States," he said.
I was at once horrified and ashamed that he's been carrying this around with him. We've been not quite what you'd call reticent about discussing all of this with Owen but until we actually knew what was going on, we felt somehow inadequate to the task of trying to explain what we ourselves did not know for sure and we haven't pushed him to talk any more than he really wanted to.
And dammit, we should have.
But now he knows, just as we do, and I think it's a relief to all of us. He understands that his brain goes a little crazy with the electricity sometimes and that's what causes a seizure and that the medicine he's about to begin is an attempt to prevent the seizures.
He still didn't really want to talk about it today and I understand that.
But we did talk about it some and I told him that there were probably other kids at his very own school who have epilepsy and his mama kissed his head and said, "You have a special brain, Owen," and I know this is a lot for him to take in.
After the appointment, we went to a science and history museum where we saw so many things.



He carried his stuffed owl around with him and gave me a puppet show.


I think his favorite part of the whole museum was a tiny replica of a theater where they were showing old silent movie clips, one after the other, and whenever I said anything he told me to hush and he whisper-instructed me to tell him to hush when he said something, so I did. 

It was a silent movie, y'all. 

We had lunch after the museum and drove on home and of course we stopped at the Busy Bee. 
I had to take a picture of this.


That's what greets you as you enter the restroom area. Men to the left, women to the right. 

When we got home, Boppy was here, shoveling and spreading wood chips and Owen jumped out of the car to hug him and he said, "I have epsilepsy and that's what causes the seizures!"
"I heard," said his Boppy who told him that he knows people with epsilepsy too and they are just fine and that so is Owen and we are going to take good care of him. 

Owen and I went out and checked for eggs and found four and went out and pulled up a bunch of multi-colored carrots and I showed him the Parcheesi game and we discussed when we would be playing it and then the little family went off to collect Gibson from his other grandmother's house where the boy has been shacking up with his true love, Cousin Lenore. 

When I kissed Owen good-bye I said, "We had some fun, didn't we?"
And he said, "Yes we did!" 
And then he said, "If I ever need to go back to Jacksonville, I know who to call!" 
And then he gave me the biggest seven-year old wink a boy can give and I laughed. 

I had bought him a new stuffed animal at the museum gift shop, a possum, and he was holding on to it as he'd been doing since he got it. 
Seven years old. Smart as a whip. Still a little boy, even if he's not even quite a foot shorter than I am. But big enough to start to understand what's going on with him and we'll do a better job of that. 

And now I'm home and so glad to be here. The little hook-grin moon is shining as bright as it can be, rising above the naked branches of the pecan trees and the frogs are singing their early-spring song and tonight I'll sleep in my own perfect bed next to my beloved although it was pretty sweet to sleep last night in a bed with Owen a few feet away, his breathing so steady and deep. 

Mr. Moon held me for a few moments this evening and I finally had a little bit of a cry. It IS a relief to know what's going on and I do understand that this is not the end of this path by any means but it's a part we've struggled to since the day Owen threw up on the bus back in September and then didn't know who his daddy was and I immediately texted Elizabeth because even then, I knew in my bones what was going on. 

It seems as if it's been a long journey, but relatively, it's been so short, just as the trip to Jacksonville and back is, sitting between my Maggie girl and my Owen boy, playing baby games with one hand and holding on to my still snuggly little guy with the other, playing Animal, Mineral, or Vegetable. 

"Give up?" he always asks when it's his turn to have something in mind that we're supposed to figure out. 
And often, we do give up and let him tell us which makes him so happy because he's outsmarted us again but in real life, we don't give up. 

We hold on and we'll continue to hold on and we'll deal with whatever comes along and we'll learn and we'll grow and we'll even, goddammit, have some fun along the way and stop to take in the view. 

And we sure as hell know where the clean potties are when we need to stop to pee. 

Big love...Ms. Moon








39 comments:

  1. Oh, Ms. Moon, I haven't commented in a long, long while, but this one made me tear up and need to say something. I love your family and how you view things and take care of each other. I want to hug you all.

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    1. And I want to thank you for commenting, for giving me these words.
      I would take that hug, too.

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  2. Amazing! I know its a relief to have an answer and you had your suspicions. I'm so sorry for Owen and all of you. Will you consider marijuana as a treatment or consult more with Elizabeth? How does epilepsy come on from seemingly out of nowhere? My heart is with all of you. I wish I could give you and Owen and Lily and Jason big hugs. I care Mary. Love Joanne

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    1. Florida is working out its medical marijuana laws right now and if we need that option, I think we will have it. I am so grateful for that.
      And epilepsy seems to still be a mystery as to where it comes from.
      Thank you, Joanne, for your constant caring. You are in my heart.

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  3. This made me tear up too. So glad you have answers. Owen is whip smart! You are too.
    Xoxo
    Barbara

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    1. I feel less and less smart with each passing day but to balance that out, Owen grows smarter every day. So there is that.
      Answers are good.

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  4. Oh my heart. You know, to know is something, a powerful thing. And when you wrote about his need for the knowledge that he is not the only boy with this, my heart soared. He is not alone. Neither are you, or any of us. My son, who is just 11, has a rare genetic disorder and one of his burdens is the inability to find someone else with it that is nearby.

    Community is powerful, and I am reminded when I come here that love is what matters. For you and your man and Lily and Jason and their children are loved, and we rejoice in your answers while we know that you are fearful. All will be well.

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    1. Yes. All will be well and I feel sorry for your boy who of course needs community as we all do. Love IS what matters and we have that and I am so glad.

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  5. It is good to know, and now you have a plan, and that's what is important. And tell Owen that my son has epilepsy. Connor is in college now but he even played ice hockey in high school. It is a lot to deal with at first; oh, how I remember those days. I remember when Connor was first diagnosed, we came out of the neurologist's office, and he sat in the car and just cried and cried. So did I. Then we dried our tears. Sometimes you just need a good cry.

    My 2 cents (which I'm sure 10 other people have already suggested), and his mother already knows but here it is: get him an ID medical alert bracelet. They make them now in "sport" versions that the younger kids (and anyone) seem to like better that the traditional ones.

    I will be thinking of all of you.

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    1. Great idea on the bracelet! Thanks! And I'll tell Owen about Connor.

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  6. Can I send a special message with a hug to Lily and Jason? It's never easy to get a diagnosis for your child. I know this feeling so well. I know everything will be fine but ... it's a hard thing to have to be handed. Much love to them, and all of you.

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    1. Yes. Hard. But knowing is better than not knowing and the diagnosis just confirms what we already knew in our hearts.
      Thanks for the love, dear Jo. Thank you.

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  7. The entire time I was reading this I was virtually hugging every single one of you. It is a relief to know. I am glad you all got him the appts and tests he needed. Does he know how many people across the blogworld love him?

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    1. It's funny. He DOES know that he is loved by the blogworld. He is beginning to grasp what Mer's blog is and that people care about him.
      Some day he will realize it all even more and I will always be sure to let him know how much support and help and love he has been given here.

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  8. I've checked in several times today and have been holding you and your beautiful family in my heart all day. I'm sorry Owen has epilepsy, but relieved that it's a common form and can be treated. My cousin was diagnosed with a less common type when she was about two, but is in her '50's now and has a wonderful husband and daughter and a career she loves. Owen is smart and kind and has an incredible family who is there for him. It'going to be okay...but I know he loves to climb trees, so it sucks that he's not supposed to go higher than 3 feet! ):

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    1. Yep. The tree-climbing thing sucks. But if is seizure free for six months, he can climb trees again so there is that!
      Thanks for telling me about your cousin. We need to hear stories like this so much. I love you, woman.

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  9. Hugs to that sweet boy of yours. I'm glad you all have some answers now and can take whatever next steps are necessary. 💗

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  10. Been thinking of you all today. I'm glad you have an answer now. Not knowing is the hardest part...at least it would be for me. It sounds like Owen was a very brave boy.

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    1. Yep. The unknown is the scariest thing.
      Owen is so brave. I am proud of that child.

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  11. thought of you and Lily and Jason and Owen all day. Glad you have some answers, as you suspected. Hard for a young one to understand, but with all of your love and guidance, he will be able to understand that he is special....in so many ways. Hope you have a dreamless and deep sleep tonight- you deserve it.
    Love and hugs to you all

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    1. Oddly, I had very cinematic dreams. As in, I was directing a movie, I think. I may have also been in it. Strange.
      Thank you for the love and hugs.

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  12. This made me tear up -- ok -- I wept. It IS so difficult to be given a diagnosis for your child, your baby, and no matter the relief, it's just hard. Owen will be fine -- probably more than fine as he sounds like an extraordinary kid. I love all of ya'll through thick and thin and am always here if you need anything.

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    1. Elizabeth, I can't even imagine how we would have gotten through this without you. I mean that with all of my heart. My whole family feels that way and we love and adore you and are more than grateful.
      Words can't begin to express.

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  13. Bless all of you, and especially Owen and his very wonderful mind.

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  14. I love that Lily told Owen he has a very special brain. He has a very special heart too. I am glad you have answers now and that you are all in this together, supporting and loving one another. And thank god you have a resource like Elizabeth. Please hug Owen for me, and Lily too, and tell them I send love. And love to you too dear Mary. Always.

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    1. You are so precious to me. Thank you.
      Always.

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  15. Well, I am so glad you have answers, even if they're not quite the best answers you could get. Not to second-guess the doctors, but is it ever possible to NOT medicate if a kid has mild epilepsy? Would it be responsible to let him go day-to-day without meds, in the hopes that his seizures would continue to be infrequent and mild? Could he ever grow out of it entirely? There's so much I don't know!

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    1. From what I understand, every seizure can take its toll. And every one of them presents the threat of danger if he's not in a controlled situation. Of course because he's seven now, he's almost always, every minute, near an adult but this will be changing as he gets older and ranges farther afield and becomes more independent. So...
      And yes, he could grow out of it entirely.
      There's so much that NO one knows. But I suspect we shall know more as time goes on.

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    2. OK, that makes sense. I can see how there would be a need to control the seizures given that level of danger. I hope he does grow out of it. (Needless to say!)

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  16. It's very common and manageable;I'm glad they were able to diagnose him properly.
    Colin absolutely loves the science museum you all went to. He'll be jealous.

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    1. It's a really fun museum, isn't it? Does Colin like the little theater?

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  17. well, it is as we expected, glad it is the most common form. and in hindsight of course Owen would have been worried all this time. so no tree climbing? for now or always? that one is tough. and yeah you have to be silent in the movie. it's a silent movie. silly Mer.

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    1. If he is seizure-free for six months, I think he can climb trees again. Let us hope for that!
      And yes! The SILENT movie! I loved that.

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  18. That sweet boy who is so lucky to be held in so much love. I'm so glad there was a diagnosis. I am standing in my office weeping and sending you all love.

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  19. What a sweet boy Owen is, and so surrounded by a great loving family. I'm sorry for the diagnosis, but relieved he has one. Not knowing is a scary thing. I got a little teary-eyed when he thought he was alone in his seizures. I'm glad you had a talk with him and eased his mind. And I hope the meds keep him living his life just the way he wants to.
    Hugs to all of you. xxoo

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  20. My thoughts are with you and your family. I wish you all the best.

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  21. Xoxo to all of you. Owen is like a super hero to me. Well, you all are really. I love your beautiful family. Thank you for sharing them. Thinking of you so much,

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Tell me, sweeties. Tell me what you think.