In honor of Epilepsy Awareness Month I had the chance to chat with Michelle Fischer, who broadcasts A View from My Window on the Indiana ARC website. Her hour-long interview with little ‘ol me, A View Into Epilepsy, was uploaded today and I encourage you to listen to it.
The Story of Me — Why the Cafe is a “Real” Kind of Place
And I realized something.
While I can’t always update as often as I would like here at the Cafe, my posts are real, honest, and represent a part of me that I have a hard time showing sometimes. Not because I’m some mysterious person, but because I’m human.
Dealing with an Epilepsy diagnosis, living with life and death epilepsy, juggling other diagnoses of autism, Axenfeld-Rieger Syndrome … all these things change a person, change a family. But they don’t have to change it, transform it beyond what you can handle.
My hope is that my talk with Michelle helps someone, anyone, out there who might not get that being real about epilepsy means accepting you don’t have to be perfect – that it will be hard to deal with sometimes – that you will be overwhelmed and disillusioned. But that doesn’t have to be the end of the story.
Admitting a Harsh Reality – The Stress of Being a Special Needs Parent
Something I haven’t written about here at the Cafe too much, but something that undeniably changed me during the earliest years of being a special needs mom, was my slide into depression.
After Andy was born and we were dealing with one diagnosis after another, I put more pressure on myself than ever before, and I struggled and I strived so hard to be ‘perfect.’ I wanted to be the perfect mother, the perfect wife, able to handle every diagnosis and the well over dozen weekly therapy appointments … you guessed it, perfectly.
And I couldn’t.
And I hated myself for that weakness. I punished myself for that weakness. I spiraled under the reality of depression and the amazing stress of those early years. I tried the unthinkable and was hospitalized for attempting suicide.
I didn’t get better overnight. This isn’t a 30-minute sitcom where depression gets better because of a magic pill, or I feel so much better that life is *insert cheesy music* ‘worth living again’ — I’ve struggled and I’ve fought to do better for myself and my family.
Ten years later, I can look back and see my spiral happening, I can see how I set myself up to fall. Not because I happened to be a special needs parent, but because of the combination of epilepsy, autism, brain damage, vision loss, rare disorder … and of my own inability to see beyond my need to be perfect. I set myself up to fall.
This wasn’t a one-time situation – I have a chronic issue with depression, and while I am doing wonderfully these days I still catch myself having limiting thoughts, and small thoughts of ‘perfectionism.’
Life is a journey, not a race, and with depression you go through the valleys sometimes.
But you also get to climb to the top of the mountain and look back at the road you’ve traveled. I’m stronger, wiser, healthier, and more emotionally capable of dealing with being the best mom and wife I can be … not perfect by any means. And I hope that reality might help someone else see that perfection is an illusion – reality is a life filled with challenges and triumphs, tears and laughter.
So my talk with Michelle started out about Epilepsy and life with these amazing guys, and it hinted at what I’ve shared in more detail above. But I think it’s more important than ever that you realize I am only human. I make mistakes. I grieve. I love. I learn. I go on.
When you are dealing with the added stress of being a special needs parent, the fear of epilepsy and uncertainty of autism and so many other diagnoses, it’s okay to step back and realize that you are only human.
I’m okay with that.
Your Turn: Do you or a loved one deal with epilepsy, autism or other diagnoses and struggle with depression? Have a chance to check out my interview? Want to share your own thoughts on special needs parenting and epilepsy?