It’s a New Year, It’s a New Post!

Okay, we’re going to try this again!

Shortly after we moved to Texas, we had a server crash and tragically lost all my posts. I had my images, but the text was gone due to a lack of database backups. Boo. We got the site back up, but I just never got back in to keeping it updated the way I had when we lived in Indiana, so we let the domain name go.

However, now I am remotivated! Energized! I have a plan! My husband and I have recently enjoyed overlanding with our small-by-Texas-standards pick-em-up truck. On one of the forums he frequents, the hubby found a group that organizes overlanding events in Florida specifically to benefit the Epilepsy Foundation of Florida. How fantastic is that? They participate in walks and all other sorts of awareness events, too, but we thought the overlanding event was pretty neat. We want to get something like that started out here in our area for the Epilepsy Foundation of Central & South Texas. That would be cool, right?

ImOKWalk2_FullIt did make me realize, though, that I have been super lax in my advocacy. Last year, I sort of got the ball rolling when I donated my profits in September from my business as a Jamberry Independent Consultant to the EFCST. It wasn’t much, but it was something. We are participating as a family in the I’m OK Superhero Walk on April 30, 2016 that’s coming soon. I’m pretty excited about that. I even created a wrap in Jamberry’s Nail Art Studio that I can wear for the walk. Oh, and of course my profits this month are going to the walk, too. It’s turning out to be a pretty good month, so that’s exciting. I’m so happy to be able to help support the programs and services that the Epilepsy Foundation provides! If you want to help, you can donate or sign up to walk with us at my I’m OK Superhero Walk fundraising page!

But I need to do more than just throw random bits of money here and there (although I’m sure every dollar is appreciated). The important thing is awareness! Epilepsy is the fourth most common neurological disorder. There is no cure, and close to thirty percent of people with epilepsy never get control of their seizures (I’m one of them!). Seizures and seizure-related accidents cause more deaths than breast cancer, and epilepsy is still under-funded and under-researched. People with epilepsy need to talk about it, and we need to let other people know about our experiences.

So I’m going to do what I can to try to stay motivated and get this website going again. And as part of that effort, I made a Facebook page to share posts and links on. I’m also going to try to post more informational things on my Instagram account, too, so I’ll be making more things like this cute little info-graphic here. Keep your fingers crossed that I keep this going this time!

By-the-Numbers_1in26

 

Book: Weak and Loved

A couple of years ago, I purchased several personal accounts of epilepsy, including the book Weak and Loved by Emily Cook.  In my last version of this site, I wrote a rather long review of the book.  In going through my files and such, I found that I kept a copy of this review in Notepad, my favorite text editor (not kidding).  Thank goodness I saved it! This is such a great book!  I am so happy to include this review because it was one of the very few posts that made me cry when my husband told me his backups of the site had failed.  So as my first real post on this new site, I present to you one of my favorite posts from the old site, with a couple of updates for readability and clarity.  And so it goes…

At first I picked this book up because it was an account of a mother going through the heartache of finding out one of her children has epilepsy and subsequently trying to find a cure for the symptoms.  When I received the book and read through the cover notes, I realized that the author lived in Columbus, IN, about an hour or so south of where we had just moved from.  Then I realized not only did we have that in common, she is the wife of a Lutheran pastor.  This tidbit intrigued me because we were going through Bible study sessions with the pastor at our new church home, Risen Savior, a Wisconsin Evangelical Lutheran Synod (WELS) church on the south side of Austin, TX.  The study sessions were mostly for me, since my husband grew up in a WELS church.  I grew up in a Christian Science church, however, and as sometimes happens as kids get older, I fell out of practice of going to church regularly.  So when I got married, and church was such a central part of my husband’s family, it only made sense that I should learn more about it.  I admit it; I still struggle with some parts of the faith, but with the help of our pastor and a lot of prayer, I’m learning to overcome some of those struggles.  But this blog is supposed to be about epilepsy and hope, and this post is supposed to be about Mrs. Cook’s book.

So, when I first started reading this book, I really struggled with it.  I found myself alternating between wanting to shake her out of frustration, telling her it wasn’t the end of the world and everything was going to be okay, and wanting to hug her close, comforting her, and telling her it wasn’t the end of the world and everything was going to be okay.  I actually had to put it down about half way through because I was just so frustrated at her.  Well, that’s not entirely accurate.  I don’t think I was frustrated with Mrs. Cook so much as I was the attitude and emotion she had developed about her daughter’s epilepsy. It was so similar to the same thing that frustrates me about reading the various epilepsy forums.  She saw all the horrible things that could happen with epilepsy, some of which I had posted myself in the previous incarnation of this site, and then she seems to latch onto those horrible visions.  She wants to protect her daughter, keep her safe from any possible harm, which, as a mother, I can truly appreciate.  At the same time, though, you have to let your children live.  As I read through her heartbreaking account of her tangled emotions, I just kept getting angrier and angrier.  “Oh no, another mother who wants to wrap her child in bubble wrap,” I thought, as I mentally rolled my eyes while I read.  I put the book down half way through, trying to find the will to finish the story.

Then I stumbled across this completely unrelated blog post, where Mandy, the teenage author whose seizures had recently increased in intensity, posted a photo of her hairbrush after she brushed her hair in the morning, full of loose hair strands.  (She seems to have removed that blog after her surgery last year, but she started a new one as the Epilepsy Blogger.) My hairbrush, in the morning, looks like that photo did.  Worse, actually.  In that post, she talked about some other side effects she had due to her various medications, and the impact they had on her as a teenager, some of which I felt myself when I was her age.  I was suddenly reminded that I have been living with epilepsy for so long that I honestly don’t remember life before epilepsy or without side effects.  It was a subtle reminder that we were all new to this once.  I’m sure my mom was scared and nervous on some level, but she’s a pretty level-headed woman, and she had some small amount of experience with epilepsy before I started having seizures.

It occurred to me that I was looking at some of these epilepsy stories from completely the wrong perspective.  I freely admit that I’m resistant to, even scared of, change in my life, and what can be more life-changing than a chronic and sometimes very scary disease, especially if you have NO experience with it before the first symptoms surface?  How arrogant can I possibly be?  Mrs. Cook mentions in her book that sometimes God doesn’t answer our prayers directly but works through the angels around us in the form of family members, or friends, or in this case, a completely random blogger who happens to live somewhere an hour or so south of me now. Circles.

Thanks to the somewhat-anonymous Mandy, I found the courage to pick up Weak and Loved again, and this time I managed to finish it.  It probably helped that we had had a few more sessions with Pastor Kuehn, and I found myself reflecting more on my own faith and perceptions and misconceptions.  So with this new and fresh perspective, I read with more interest and more compassion.  I do have to give Mrs. Cook some major props here, and this is partly because of Pastor Kuehn, too.  As a parishioner, you expect your pastor and his family to be above reproach.  The standards are higher.  Because you come to the pastor with your problems and questions of faith and expect him to have the answers, it surprises you when you realize he and his family are just regular people, too, and they have their own problems and questions.  Mrs. Cook is brutally honest with her emotions, her fears, her questions of faith.  Why did this happen to her, to her family, right now when they have so much else going on in their lives? How can she possibly have the strength to be strong for this one child, yet she was also expected to be strong for an entirely new church family?  Much of her attention becomes devoted to helping her daughter get through the day rather than focusing on the needs of their community, and she feels guilty for it.

And here enters the theme of her book and her wonderful blog, Weak and Loved.  It’s okay to be weak.  It’s okay to sometimes be the one who needs comforting instead of always being the one who offers comfort.  This was a message she needed to hear, and so did I.  I love the book for that message.  She showcases her weakness.  I can’t even imagine the strength it took to write about such inner turmoil.  I admire her for it.  I talk about my epilepsy all the time.  I talk about some of the really embarrassing things that have happened during my seizures.  I rarely talk about how scared and frustrated and mad I am at the world sometimes, outside of my small personal circle of confidants.  Mrs. Cook does all of that, and that takes real courage.

This book is wonderful on so many levels.  It details a personal account of a mother, a family, a community, going through the shock of finding out a young child has a rapid and severe form of epilepsy.  It details the searching process, the resultant surgery, the anxiety and relief as they go through the healing process – both physically and emotionally. It explores personal feelings of depression, guilt, anger, and questions of faith.  It goes beyond that even, as the last few pages are dedicated to those people who make life easier to bear for families going through a similar tragedy.  She writes there were “things I did not know to ask for, things that I did not even know that I needed, until I received them and was blessed.  This is how I would have asked, had I known how to do so.”  Those few pages by themselves make this an amazing resource, but the other 187 pages are a great build up and help put those suggestions into context.

Please take the time to read this book.  If you have more time, check out Mrs. Cook’s wonderful blog.  While she links to her book, her blog focuses more on her job as a Mommy of now six children and as a Christian woman.  It is at times inspiring, informative, whimsical and thought-provoking.  She has a special section dedicated to Aggie’s status.  The struggles I had with her story in the beginning were more because of my own narrow viewpoint than anything else.  So thank you, Emily, for opening my eyes and my heart a little further than they had been before.

And speaking of circles: I emailed Mrs. Cook after I originally wrote this review to let her know I had written it.  She had smiled at my mention of circles.  Apparently she had written a guest post on Mandy’s blog (the one I found the hairbrush story on).  I’ll have to check in and see if she has written one for Mandy’s new blog.  She also said she appreciated my viewpoint.  Most people who had read her book that she discussed it with read it from the viewpoint of the mother.  As it was refreshing for me to realize her perspective, it was just as refreshing for her to understand the viewpoint of the child.  Mrs. Cook wrote, “you read it with eyes and heart for the child! It was good for me to hear your perspective. Truth is, if she hadn’t gotten better, I would have been a smother mother! I would have fought terribly hard to keep her ‘safe’ (as if I could do so by my own sheer willpower!) And I would very much have needed people like YOU to come alongside me and help me let her live.”

And to that aim, I dedicate this site.  As you will hopefully see in future posts, people who suffer seizures and epilepsy can live full and happy lives.

“Who of you by worrying can add a single hour to his life?”

“Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.”

Matthew 6:27,34

Hello world!

A couple of months ago, my website admin presented me with a Major Problem. He said that there was an issue with the server. He had backups to restore my two websites, but the backups were faulty. All of my hard data was available, so I had my customized theme and the few photos I had uploaded. However, the database was completely empty.  All those posts I made? Ethereal.

This site needed a makeover anyway. I had stopped posting on it so much because I was becoming bitter. I wanted to refocus and really highlight all the positive stories that surround epilepsy, like all the support Minnesota is giving Coach Kill. I can really relate to his story. But not today, because I’m too distracted. And cold. I am so over winter. Squirrel!