Friday, January 10, 2014

A Short Review

Happy New Year, all!

It's hard to believe, but, Sunday marked the two-month anniversary of our Jedi's resection.

I apologize for not keeping all things current on this blog in recent weeks. We've met with some hard moments that have drained my drive to write.

I wish this post could be as upbeat as the last.

Renn has had a grand total of four seizures since the last post. In fact, three of the four happened in one week... last week, to be honest.

It's been a difficult rollercoaster of emotions because while we knew that they might come, we weren't prepared for so many. He has also been struggling with school, and that has brought us to tears. He came home before Christmas begging to not return. He said the words no mommy ever wants her six year old to say, "Nobody likes me. I have no friends at school."

Naturally, this put me into Momma KODIAK Bear mode. I wasn't having it, and I changed my way of thinking about who I was when I stepped onto that elementary school campus. I no longer cared if I made people roll their eyes when they saw me. I am Renn's mommy. Plain and simple.

We put in for Renn to have an Individualized Education Program (IEP), and I spoke with his teacher about changes that needed to be made. I felt badly for her... She was under the impression that Renn's somewhat hyper activity and distractedness would disappear when Renn had surgery. And since it wasn't the case, I almost feel as though we let her down. I realize that none of us knew what to expect post-surgery, but maybe I lead her astray and her hopes went too high. Either way, Renn needs to be taken care of while he's in school. And since I can't be with him, I need to trust that they are doing all they can. When Renn came home from school in tears, for the third day in a row, I posted this on my Facebook page... It's something that both the hubs and I feel strongly about, and it still rings true to this day:
Broken for our Jedi... He, through tears, uttered the words, "Nobody [at school] likes me."

I wish Epilepsy had a face. Something that EVERYONE could see and recognize. That way, the people that are so hard-pressed to tattle on, ridicule, judge, or dismiss those with Epilepsy could be reminded that they should instead show forgiveness, love, encouragement, grace, and understanding. I will be the
first to say that MY son doesn't need to be pitied. He also does NOT need to use his condition as a constant excuse. BUT, when you come to me nearly EVERY SINGLE DAY and tell me something ELSE he's done, what do you think that says to him? What do you think I can do, that is more than I do on a daily basis??

I hate to rant, especially here. But I'm saddened that after EVERYTHING we have said, done, supported, requested, and handed information out about, he's still feeling like no matter WHAT he does, he can't win.

I get it. I do. I live with him, after all. It IS confusing when he goes from happy, responsible, loving, and focused to the complete opposite. Last week, he was highly praised and rewarded at school. And that, was a blessing. One would think that those moments would be treasured and remembered, and maybe they are. But Epilepsy is like that... It's all over the place. It's not *just* seizures, as easy as that would be.

I wish Epilepsy was as widely understood/spoken about as say Autism or even ADD. But it's not. If it had a face, then maybe Renn would want to go to school tomorrow.

I wish Epilepsy had a face... I guess a 14 inch scar isn't enough.

Okay, so now that this new semester has started (we just ended week one), Renn had good days. And not just good days, GREAT days. So, I am thankful and am trying to remain optimistic. The hubs and I have set a goal- if by January 31, Renn is still miserable, he will be coming home to be homeschooled. And that will be that.

Now, in keeping a positive attitude and a prayerful spirit, we move on. We want so desperately to have a fantabulous year! And even if Renn's seizures come back, we are doing all we can to just keep our eyes on whatever plan God has for us. It's definitely not what we were hoping for, but somehow He's helping us through. That is something to be even more thankful for.


  1. I hope great day follows great day with more great days after that. An IEP is a good start, and hopefully won't be too slow a process. In my experience as a teacher, they were often ridiculously long and drawn out. Is a school transfer a possibility - in the interest of a clean, fresh start? Your frame of mind is proactive and trusting, as always. So, as always, hang in there. I won't add you to my prayer list because you have never left my prayer list....

  2. Oh my. Now, more than ever, I want to meet Renn. Give him some support. :) Maybe have a Lightsaber fight... :) Good Luck Renn (and the Telles Family!!!)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! May the Force be with you all!
    PS Tell Renn I am his friend! :)

  3. So sorry to hear that things haven't smoothed out in quite the way you hoped Bethany. And school is hard. Kids can be mean. I'm sure the fact that Renn has struggled because of his epilepsy and missed school for his surgery has set him apart from other kids a little bit. Maybe as his attendance settles down and the kids have a chance to get to know him better things will improve. Even without the added difficulty of epilepsy, every kid grows and develops at his own pace - some faster, some slower than others. They all hit rocky areas - socially and academically. It's part of growing up. So here's hoping and praying that the roller coaster will level out and become a pleasant ride through beautiful places with only the occasional dip in the road.

  4. Bethany, My heart breaks for Renn and for you and your husband. I know you two are hurting so badly as you see Renn upset and sad. School is hard enough without the extra challenges Renn faces each day. I keep you all in my thoughts and prayers.

  5. Hi Bethany, I'd like to ask you a couple questions from your experience caring for epilepsy. Please email me when you can at mtrucillo(at)recallcenter(dot)com. Thanks!