Day 22 – This Whole Life is a Storm

A brief note: Apologies to those of you who subscribe to this blog for the shenanigans of the past few days. I’ve gotten a few enties mixed up and posted some early by mistake. If you got an email for a blog that is not longer there, don’t worry, it will be back. Again, very sorry. If you’re reading this and want to receive notices in your email every time there’s a new post, please click on the “Follow” button on the right. Thanks!

On August 28th, my wife lost her job. 24 hours later, I lost mine. This blog is a continuation of the day-by-day chronicling of our emotional journey back to employment. This is bound to be upsetting, hilarious and hopeful.

Friday – September 19, 2014

Elora and Cami

Elora and Cami

I had the privilege of accompanying Erin to EPU (a non-profit helping families through the first few, rough years of having children with special needs) today to hear our oldest, Elora, speak to a group of adults about her experiences as Cami’s sister. I was the only male there. EPU stands for Exceptional Parents Unlimited, but if the place was honest it would be called Exceptional Mothers Unlimited, or EMU. But then it would be named after a flightless bird native to Australia and I don’t think they want that. So they pretend guys come there, too.

This was actually the second time Elora went to EPU to speak about Cami. The first time was a year earlier, when she was 10-years-old. Elora is a pretty composed kid. She was introduced as “11 going on 30” and that’s about right. I’d have been scared to death at her age to speak in a room full of intimidating adults, but for her it’s nothing. My theory: her glasses are X-ray specs and her high level of comfort and security with herself comes from seeing everyone in their underwear, like, all the time.

It was sobering to hear the past 9 years of our lives from Elora’s perspective. I didn’t know this, but it took her a long time to process that Cami has a disability. We never hid the fact from her, but it’s hard to know what your kid understands and doesn’t understand. She said she didn’t fully get it until just a few years ago. I’m actually kind of grateful for that.

The love Elora has for Cami runs quite deep. We find that people form a bond with Cami pretty easily. She has a quality about her that invites you in. Her spirit is deeply felt, even if you don’t always understand her.

Cami’s body holds her back for, I assume, a wise purpose. My beliefs encompass that idea that Cami’s spirit is too pure to be tainted by the world, and that she is here less for her experiences on this Earth and more for the benefit of the rest of us. She is innocence, pure and unaffected by her circumstances, just as so many of her peers are. Cami and others like her aren’t just special people, they’re essential people. I truly believe the world would be quite a bit darker without them.

I thought a lot about the next life as I listened to Elora speak. I believe that it’s then that we’ll finally get to know Cami fully. She’ll talk with us, person-to-person, and tell us all about her unique perspective on things and her memories. This both excites me and freaks me out. I want to hear from Cami, but will she remember things like the time I looked away for a second and she rolled off our high bed and landed on her head?* Will she judge me harshly for those times at dinner when I am weak and yell at her, after thousands of meals, for not being able to eat properly and making a mess? Or will she focus instead on the times we went to the grocery store together or played on the living room floor or the kiss I give her each night before tucking her int?  From what I know of her (and I like to think I know her very well), no, she won’t judge me too harshly. Her spirit is loud and it is pure and I don’t think she possesses any sort of guile that could possibly manifest itself in the next life or any other.

*Cami had an MRI already scheduled for the very next day. I’ve never been so nervous. Thankfully, everything checked out.

So, when I look at Cami, I see a temporary situation. Our lack of communication is a blip compared to the eternity of continual fellowship in front of us.

How much more a blip, then, is this current trial of unemployment? There’s no unemployment in the next life. I’m sure we’ll have our worries and concerns, but that won’t be one of them. I know this is a far away idea, but sometimes when you’re in the midst of something it can seem like it will never end and it helps to remind yourself that that’s simply not true.

Unemployment does not compare to the struggle we had coming to terms with who Cami is and it isn’t cancer and it’s not living under a military dictatorship or having each day’s primary goal being the fetching of water, but it’s just as temporary. It’s good to remember that just about everything ends, all the trials and tribulations of this life–even your first and second worst nightmares. I talked about storms the other day, and how they pass. The truth is this whole life is a storm. And it will pass. And then we’ll see and understand.


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