Sunday, July 22, 2012

An Explanation & A Request... For A Sweet Jedi

I know that I have been "missing" somewhat, lately... But I promise that I have an excellent reason!





You see this little man? ---------->

Well, he's my oldest son. His name is Renn, and he's 5 years old. In less than a month, he'll be going to Kindergarten. He loves Star Wars and knows everything about all six movies... Seriously. He's very smart (okay, yes, I'm a teensy bit biased!), and has said some of the most hilarious things I have ever heard in my life.

Back in February of this year, Renn began having seizures. I mean, out of NOWHERE. They are not your stereotypical lying on the floor, twitching, convulsing, and drooling type seizures (those are called Grand Mal seizures). He has what is known as Petite Mal seizures, which are far less scary to watch (unless you're the person's parents!). He'll begin by shuffling his feet, pointing at or asking about a million different random things, and then his body will "spasm" and he'll flail his right arm out, and might run in a circle while clapping or hopping.

We ran him through the gambit of tests. He had a CT Scan, an EEG, and a MRI... I must admit, with each test, my heart sank. It was hard to watch. But him? With each test, he got to be a cooler and more intelligent Jedi. The resilience of this child... I can't even explain. Anyway, the CT scan came back clear. MRI? Perfect. But the EEG? No such luck. The doctor said it was just "ugly". Believe me, I didn't spend years in medical school learning how to read EEGs, and to me, that thing made me cry.


So in March, we got hit in the gut with a load of the heaviest bricks. Our little boy was diagnosed with Complex Partial Epilepsy.

EPILEPSY??!!!

That word just didn't make sense. He was perfectly FINE all this time! Would he be able to live a normal life? Would he be able to drive one day? What did that word mean, exactly? It truly is unbelievable how little we knew about the disease, and what kind of stigma it holds for those who don't know. I've long dealt with people not understanding my disease (I'm a Type 1 Diabetic- have been since I was 10), but now? Was I going to have to go into each teacher at every new school year and whisper quietly all the restrictions he was to have? NO. I just wasn't having it.

Luckily, his Neurologist- thankfully a close family friend of ours- calmed me the heck down. He said Renn would be just fine, and there were no restrictions. He'd be on medication, and once it kicked in and he stopped having seizures, we'd recheck in a year and see if we could start weaning him off the meds. That meant there's a chance he'd outgrow this!

Hope! There was hope!

But, three months, three heavy medications, seven different dosage changes, and many seizures later, that one year goal seems further and further out of reach.

Tomorrow (July 23, 2012) I will be taking Renn to our wonderful Children's Hospital, where we will admit him, and he will be monitored for at least 72hrs on what's called a VEEG (Video EEG). The goal is to find out what, exactly, is going on in that beautiful, innocent brain of his. I am praying for answers. I don't think there is anything worse, short of losing your child, than not knowing what is going on with your baby.

Why am I sharing this? Well, one- I'm a writer. I have to write, and as I've explained before, it's extremely therapeutic for me. But, two- I am sharing this because I know I have a family, here. A family that cares about what is going on. But more than that, we write for kids everyday, so odds are, we kinda like them. :) I'm hoping that maybe, just maybe, I can lean on you in this hard time.

So I am making a request... If you wouldn't mind it this week while Renn is in the hospital, could you share this picture and story with everyone you know? I will be making it my profile picture on FB, but you certainly do NOT have to go that far. But maybe ask your friends, families, or followers to pray and/or share?  I want to be able to show Renn, as he sits and sits and sits during the VEEG, that there are people in the world praying for and thinking of him... That he CAN get through this, the only way Jedis can... By using the Force. :)

Please copy and share me!


For now, I am on hiatus from my Pondering posts. I hope that you can understand. My love for writing is only surpassed by the love I have for Jesus, my husband, and kids. But I promise, I will be back!

For now, I'm off to a galaxy far, far away with my handsome Jedi. Thank you, in advance, for all the love you have shown me and my sweet boy. I hope to repay you with the same kindness one day.

57 comments:

  1. Beth,

    Sending light and love to your little Jedi, you and your family during this time! Feel the hugs!

    Lori

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    1. Thank you, Lori! That means the world to us.

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  2. May the Force be with you, Renn, the most awesome Jedi EVER! Your Jedi picture will be on my FB and my blog while you're in hospital.

    HUGS to you, Bethany! May the Force be with you, as well.

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    1. Thank you SO MUCH, Beth. I cannot get over how much support you give us, complete strangers, on a daily basis. You're the best! God bless you!

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  3. I will definately share your post with my friends, I have some amazing friends who I know will hold your family in their prayers.
    I will never tell someone I understand what they are feeling or going through, but I did connect with your feeling of not knowing what is going on with your child. For me it is developmental rather than medical. The girls are developmentally delayed, they are starting 9th grade in the fall and function somewhere around a 3rd grade level. They don't fit any diagnosis, not autism, not down syndrome, none of the lables fit. So how do you ponder a future when you have no clue what that future will look like? So I am praying for answers and a successful treatment.

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    1. Paul, thank you for sharing your story as well. Not knowing has to be very difficult for your family. I will pray for answers for you as well.

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    2. Thank you, Paul... I happen to love your girs very much! I am praying for them, your wife, and you. God's plans are infinite and wonderful... Never forget that!

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  4. I've shared your post. Good luck. Sending peace and hugs your way.

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    1. Thank you SO much for your support, Stacy. We greatly appreciate it!

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  5. Bethany!!! May the force be with you and your little man! It is sooooo hard when your baby is sick. I hope they find a solution for Renn!

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    1. Thank you, friend. :) I hope so, too. You're the best!

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  6. Thank you so much for allowing us to touch and agree on behalf of your Renn.

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  7. I'll be sharing this and praying for your little boy and family. Thanks for sharing with us Bethany.

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    1. Thank you, friend! You're so sweet. :)

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  8. I'll also be sharing and praying. I had a scare something like this once. At six months old, one of my twin girls randomly stopped breathing. I just happened to be watching her at that very moment, and called 911. They took her to the hospital and diagnosed her with ALTE... which stands for an "apparent life threatening event" but couldn't give me any other explanation. She's fine now and it's not "supposed" to happen again, but I feel for your little boy. Praying you get those answers soon!

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    1. How terrifying, Hannah! Oh my goodness! I'm so glad she's okay now...

      Thank you for your support. Wevery much appreciate it!

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  9. Praying for you and Renn, Bethany! I've been thinking about you so much as you've posted updates on Facebook. We'll be thinking of you and your super strong son this week!

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    1. Julie... Thank you. Thank you so very much!

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  10. I'll be praying for Renn and your family, Bethany. God can do miracles, and I pray Renn is healed of this forever!
    I'll share this w/my kids!

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    1. Thank you, Tina! Your prayers and love are so greatly treasured!

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  11. Praying for you and Renn, Bethany! I've been thinking about you so much as you've posted updates on Facebook. We'll be thinking of you and your super strong son this week!

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  12. Good luck, Renn. Mom and I will say prayers and send happy thoughts your way. Hang in there, Buddy!

    Love and licks,
    Cupcake

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    1. Thanks Cupcake and Genevieve! We appreciate you!

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  13. Many prayers this week for Renn and your family. Hang in there!

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  14. I've shared your post and changed my photo. I wish there was more I could do! Please keep us posted on Renn's progress. Lots of love!

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    1. Julie, just by doing so, you have humbled us. Thank you for taking the time to do all of that. Love to you!!

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  15. We will be praying for Renn, Bethany. Thanks for sharing his situation with us...

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    1. Thank you so much, you amazing woman, you. Bless you greatly. :)

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  16. Bethany, I am praying for your little Jedi! I 'm also sharing your prayer request with my church family too. I too, will share this on my wall. We love you guys.

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    1. Goodness, thank you, Cheryl. That is so wonderful of you. Thank you so very much- we love you back!

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  17. Sending hugs and prayers. May the force be with you :) In case it might be helpful, I remember reading this article a while back http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?_r=1
    You probably already know about it, and it might not be useful at all, but just in case... I will share your post :) All best wishes for you and your sweet boy.

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    1. Thank you, Susanna... Truly.

      I'll be looking up that link asap. I appreciate all your support and love. Thank you!!

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  18. Praying for you, Renn. You are a jedi. You can conquer anything. Bethany, praying for strength to you and your family.

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  19. Renn! Your smile IS the force! You are amazing, kiddo!

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    1. Carter, you and Julie Rowan-Zoch are his official heros. Thank you!:)

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  20. Hugs and prayers for you, little Renn and your whole family.

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  21. Good luck, Renn!! I hope this test is able to reveal some of the amazing ways your brain works so the doctors can find a solution that is just right for you. I'll keep you and your family in my thoughts.

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    1. Thank you, Heather! We hope so, too. :)

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  22. May the Force be with you, young Jedi Master Renn. You and your family are in my prayers.

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    1. He says, "Awww. Thanks. May the Force be with *you*. I love you."

      :D

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  23. The Force (and the force of our support) is with you Renn, and with your family!

    Mom, FYI - a close writing friend's son began siezures at 6 yrs. old, and after 2 years of testing it was discovered that he had Lyme Disease that had settled in his nervous system & brain stem. Just a thought, as I know only too well how insideous Lyme is. Sending postive healing thoughts Renn's way and will keep him in my prayers.

    xoxoxo

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    1. That's a great thing to investigate, at least! Thank you so much!

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  24. My thoughts are with you and your little Jedi. I hope the test gives Renn's doctor the information he needs to get him on the right medication and dosage to stop the seizures.

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  25. Bethany, holding you, Renn amd your family in my thoughts and prayers. I hope the doctor's get to the reason behind his seizures. May you all be held in healing grace. Renn is such a brave Jedi.

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    1. Yes he is... Thank you, Patricia. God Bless. :)

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  26. You've touched my heart...and I hope many others. Thank you for sharing...communicating our feeling and needs is what life is all about.:) I sent this message to everyone I know.
    All good luck and best wishes to you and your son and your family!

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  27. Wishing all the best for Renn!

    Knowing very, VERY little about Star Wars, I Googled inspirational Star Wars quotes and found one that seemed apropos:

    “You’re all clear, kid! Now let’s blow this thing and go home!”

    So hoping that one will be coming your way VERY soon!

    - Cathy

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  28. Wishing for all the best outcomes for Renn, Bethany. Hang in there.

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  29. Hello Bethany, I followed the link to this page by my friend on FB, my thoughts and prayers are with your little Jedy-boy and your family. Please, stay strong! God Bless! / Yulia

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  30. I've been praying for your family all day. Hope good news is on it's way.

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  31. Reposting on my FB fan page. Thoughts are with you and your little Jedi. Thank you so much for sharing this very personal journey with all of us. Stay strong, and may the force be with all of you! :)

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  32. I will absolutely keep the Jedi in my prayers. And the rest of your family as well.

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