Last Tuesday, before the rush to ER, I broke down in the shower and cried like I never had before. I have been feeling quite alone in this battle in trying to find out if my daughter is truly sick – being diagnosed with Epilepsy and wondering what her future will look like. I am agnostic – there was a day when I believed in things greater than me – even a bit of the supernatural. However my experiences brought me to truly question any existence beyond what we have here. I rely heavily on scientific proof and this far, obviously nothing has shown me otherwise. I have to be honest and admit that I find worship to be the place for answers when we have none – to make us feel like things will be OK because there is something else at hand. I always feel there is a better way of dealing with things.. being realistic.. but then something turned inside.
I did what a lot of people do when they are in a crisis and have no where else to turn – I directed my voice toward the universe in hopes something out there would hear me. I prayed. I prayed that the truth of AJ’s illness come forth, that she have as normal a life as she can – (in our societies definition of normal) and that I have the strength to be her constant advocate and make the right choices.
Then Wednesday came and she suffered what the drs called a Grand Mal – but after 48 hours of observation they never picked up a seizure. Was this God answering my request? Truly this went through my head. Since then, everyday I am now in constant wonderment and inside me I kept telling my self I needed to talk/write about the experience.
Does this mean if things go for the worst that I will exclaim there is no God – I may, I am human after all.. but I suddenly feel this strong hand on my shoulder and that feeling has to mean something.
Small Stars:Brightest Light 
July 19th, 2011 at 9:15 pm
As a particularly “religious” person with absolutely no religious friends, I always wondered if things like this actually did happen. I’ve quietly followed your struggle here (and struggle seems to be an gross understatement). I know it takes a lot to share things like this. I really appreciate it. I’m not sure how much comfort that is to you, but it made my day just a teensy bit brighter. Thank you.
As an aside, my wife and I have regularly prayed for your whole family since Jesse started talking about it.
July 19th, 2011 at 9:25 pm
Thank you Paul – for this comment and the support. Also yes, it does mean quite alot to know that my words positively affected someone, however it may.
July 19th, 2011 at 11:11 pm
Dusty, we’re praying for you too. And logic and God do mix, there’s plenty to read on that topic. One please to start is the Case for Christ by Lee Strobel. Talk to Him, tell him your concerns. Ask Him to walk with you. You are not alone.
July 22nd, 2011 at 1:07 am
Thank you Rob. I must admit each time I read this comment I get a bit watery eyed – I believe it’s the “not alone” part. However I will follow your advice and find that book. Thanks again.
July 19th, 2011 at 11:36 pm
I gave a friend this advice when I heard they were expecting: find a way to believe in something greater than yourself. It doesn’t have to be anything in particular, like God or gods or anything like that, but you will need to believe that you can derive strength from a power greater than your own understanding because there will be many dark nights as a parent when you will be helpless in the face of something gripping your child. It could just be as simple as a stomach bug, but when there’s nothing you can do but wait and hope and wonder WHY?, you’ll be thankful for the moment of peace and slight lifting of burdens that faith can give you. When you’re ready, there are tons of parent support groups out there both off and online where other parents who have been in your shoes can help you to fight your way through all of this. You are going to make it through, I promise.
July 20th, 2011 at 12:36 am
I like to think of that feeling as us becoming more aware of the rest of *ourselves* – the part that normally just trundles along, paying attention to the universe and people around us, filing things away in case the ‘executive’ part needs them later.
In crisis mode, it taps the executive part on the shoulder and says ‘hey, there’s more to you than you generally realise. You have depths of resources you don’t normally need to get through the day, but they’re here to draw on when the situation calls for it’.
Dunno if that helps any, but it seemed worth sharing. Hopefully coming weeks will bring better news for AJ and your whole family.
July 21st, 2011 at 4:35 pm
Tragedy makes us more introspective than usual. We’re not inclined to ask the big questions when we’re busy living life.
I am a religious person, and was before my son became ill. I don’t expect favors from God (I could go into some long theological treatise about how I view free will and life and nature and chaos but I won’t bore you). Strangely I expected more comfort. It’s really been a struggle for me personally that I don’t interact with God the same way I did before Luke got sick. It seems like I can’t be comforted the way I was before. It’s added an extra dimension of loss to everything else.
Pain hits us all in different ways. Prayers for your journey.
November 12th, 2012 at 9:53 pm
I was trying to get some sleep when out of nowhere I googled “god are you there” and somehow I stumbled across your blog.
I am 20 years old and around 9 years back, when I was in sixth grade, I was diagnosed with epilepsy. It took me about 6 years to find a doctor who’s medications would suit me and control my seziers.
The doctors could not find a reason for my epilepsy hence they figured out that since I was a forcep dilvery child,accidently the forcep might have damaged my brain nerves.
Finally we did find a medication that helped me to stop my seziers.
Why I wrote all of this?
I really hope and pray that AJ never has anything and leads a very healthy life.
The only thing that made me sail though all of it is my mother’s support and my father’s faith in god. Had my parents not been there to support me and hold my hand I would not have been able to fight it off. Today I am in college.
You sound like a wonderful mother. If AJ faces anything in life be with her ,support her and she will sail through. I know there are times when its hard and you want to give up and you ask questions likw “why me?”. Just have faith in yourself and god. Everything is fine at the end 🙂