Epilepsy Awareness, Disneyland, and a New Savanna Video

I know this post should have come last month, but my time to write has been very limited lately.  I wanted to share two moments that because of Savanna, I experienced completely differently than I would have otherwise.  I have come to realize that Epilepsy is an invisible syndrome for most that don’t have other identifiable features that would indicate a problem.  I have found that once I briefly describe Savanna’s situation to someone I don’t know,  I usually hear in return “I have a sibling/friend with epilepsy.”  And therefore are educated, right?  Sometimes.  I find it amazing that epilepsy touches so many in the world.  It can have a great impact on a significant number of people around that person.

Most recently, I was at a chiropractor getting muscle work done.   This is one of those times when small talk content is a decision.  I want as many people to know about Savanna as possible, because there is simply not enough awareness out there that this happens and sometimes dramatic treatment alters the trajectory of the patients life in magnificent ways.  The first step to the solution to any problem is awareness.  IS is rare, and often misdiagnosed far too long.  Anyway, do I say I have a daughter with epilepsy in remission from surgical treatment, or just leave it out?  It takes some experience to decide on the spot whether or not to mention it.  I decided to mention it this time, after all I am in a healthcare organization and there is usually more awareness than other places.

I have learned how to condense the situation into one or two sentences.  She seemed interested.  Then here comes the statement (big surprise): “Oh, my best friend has epilepsy.”  She continued,  “Yes, she has trouble maintaining her driver’s license because of the seizures.”

Engaged at this point, thinking she understands at least a little, I respond, “What kind of seizures does she experience and what medication is she taking?”  I ask this not to pry, but rather I am always very interested in people who battle this and live somewhat normal lives.   This person responds “Uh I don’t know anything about any of that.”  At this point, I became upset.  I tried to stay calm and understand her perspective.  After all I have learned, I now know some people can only handle so much information.  But, I really couldn’t say another word to her after that.  I pretty sure she understood the silent treatment, and I hope it left an impression.

So, you have a ‘best friend’ who has seizures, and you don’t know anything about it other than she has trouble maintaining a driver’s license?  That just seemed idiotic at that moment.  A best friend knows far more than your driver’s license woes.  What you have is a texting buddy who happens to have epilepsy, is what I thought to myself.

Maybe the best friend with the epilepsy doesn’t want to share any more information than that with you, true, but doubtful.  If I could go back and relive that moment, I would have crawled out of my turtle shell and said something.  What exactly, I am not sure.  But, if I had a best friend with epilepsy, I would want to know what kind of seizures they experience and the triggers.  I would want to know what medications they were taking.  I would want to have a clear understanding of what to do if a seizure happens in my presence.  Mostly, I would want to know how I could be the best friend possible.

My second experience is disability related versus just epilepsy, but it fits the theme.  When Savanna was just starting to have breakthrough complex partial seizures, we had plans to visit Disneyland.   The experience was excruciating, yet I felt surprisingly calm at the same time.  We scheduled a 36 VEEG months prior for 2 days from that point.  It was the best scenario possible.  (What are the odds?)

While at Disneyland, I noticed scores of children special needs and disabilities.  I had just never seen them before, for various reasons.  There was a couple near us when we were getting lunch.  It was clear they both had Down’s Syndrome.  The young man seemed normal other than the typical physical features people with Down’s Syndrome develop.   The woman appeared to have more physical challenges and had a custom wheelchair.

They gathered their things and took off for the bathroom at one point.  I wanted to say hello, and ask them if I could help them in any way,  but I hesitated and don’t know why.  It became clear they were not there with anyone else, or if they were, they were not around at that time.   I watched as the navigated the huge crowd and suddenly imagined a very difficult situation when they actually found the restroom.  The mechanics of what they were about to undertake seemed impossible.

I remember my heart overflowing with emotion for a second (or two), and thinking about Savanna’s future.  Who is going to take care of her if she needs a lot of assistance?  What about when I die, who will take care of her?  Will she out live me?  Will anyone love her the way that man loved that women?  Will she even be able to understand Disneyland?  I also remember talking to Rebecca briefly throughout the day, and as it turns out, she too had a heightened awareness of the people around us.  We both noticed so many people who that day at Disneyland opened our eyes wide to challenges some people and families face.

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Infantile Spasms wrecks the emotional stability of the parent, as well as the brain of the child.  It is so easy wallow in the ‘what ifs”.  It can consume you.  As I think back about that day, I probably would not have noticed these people in the same way nor would their presence have affected me as much.   Why is this important you might ask?  It is important to me now because I have to chance to help others affected by this syndrome by sharing our story, our testimony.  Through this mission, I now am closer to God, and just a better person.

Savanna has helped me be aware.  She has inspired me to further my education through researching all aspects of her syndrome, treatment, and overall care.   Savanna is doing well, really well.  She teaches me everyday.  I leave you with a video of her latest progress.  It speaks for itself.

-dad

7 thoughts on “Epilepsy Awareness, Disneyland, and a New Savanna Video

  1. Ken, this blew me away. She looks SO GOOD! Her walking is amazing, the first video reminded me of Clara, but in the last one you don’t even notice any trouble for her. Simply AWESOME. And the cognition! I loved how she “got” the game of chasing the ball and trying to grab it. You told her to go get it and she understood. Thank you for sharing. Beautiful girl!!

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  2. Ken, as usual, your blog kept me fascinated! Savanna is such a precious little girl, & I cheer for her every time she masters something else. I feel quite close to her since reading your blog. You’re great with her. I stand in awe of you & Rebecca. God bless, & merry Christmas to you & all your family. Savanna is so cute with Austin.

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  3. I love reading your blog. I wish I had the strength to do one for Alfredo. Thank you….as a parent of little with the same thing. It means a lot. HAppy Holidays! She looks amazing!

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  4. You do know, don’t you, that God knew which parents Savanna wanted and needed and he sent this beautiful little girl and her brother to you. You are the most important person in her life, her daddy! And she is so blessed to have you and Rebecca. I pray she continues to get stronger. Have a Blessed and Merry Christmas and a wonderful New Year!

    ________________________________

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  5. Ken, your blog is awesome and so informative! We can relate to so many of your posts! It brings tears to my eyes to see her progress here. Our surgery date can’t get here soon enough!!! Were you guys a nervous anxious mess leading up to Savanna’s surgery like we are? Any tips on coping? Ugh! Blessings!

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