The shaking that will not break us.

Tonight started out as the perfect night.

Just before 5 we rode as a family to the airport to pick up Oma (Robin’s mom) and then went to Chipotle and sat outside on a blanket watching airplanes land.  The cool air of a summer storm (without the rain) was a brilliant respite to the recent heat wave which broke 100 degrees (F) with insane humidity.  The girls played and wrestled on the grass and for the first time in their short existence, it seemed like Amalea and Maya REALLY loved each other, their joy shared in their free for all frolicking on this beautiful August day.

When we got home there was a brief melt down by Maya, which is normal. But she soon calmed down and I was on my way for a night off from parenting duties to go play pick-up soccer in the park – something I haven’t done in a long time.

Normally I am nervous at meeting new people, but I felt a sense of calm and resolve knowing how much I needed this night off and to both exercise and do something I loved with new friendly faces.  And it was truly fun. I had a blast.

There was a moment where I looked up at the sunset sky, the wind blowing through the trees, full of their green summer foliage, the ambiance like a symphonic master piece and I marveled out loud: This is so wonderful. Those of you who seek to experience joy and pleasure every single day know nothing of the quality of joy one experiences when you have endured a period of pain or suffering, or simply existing. The last few months have been very stressful, culminating in a vacation that felt less like a vacation and more like a marathon. And then we returned to Portland to an epic heat wave that required us buying another fan to try and beat the heat. It lasted only a few days, but it felt like it nearly did us in: the straw that broke the camels back.

But then the clouds rolled in (the thunderclouds at that!) and the temperature dropped and the wind picked up.  It’s like taking your socks off after a long sweaty work-filled day. Like taking your snowboarding boots off after a long day on the mountain.  Like taking a cold shower after a long hard day in working in the fields (or in the yard for us more urban types).  It was refreshing, renewing, and life giving.

And then it was dark, the pick-up soccer was over and I was going to text Robin that I was going to grab a beer with my buddy and the new people I had met.  I went to my car to unload my gear and when I picked up my cell phone I saw that I had missed a bunch of calls from Robin and her mom, and immediately I saw a text from Robin that simply said:

“Amalea just had a really big seizure”

I don’t know if you’ve ever experienced bad news, but there is that initial moment where it just doesn’t feel real.  There are no emotions, in the first few seconds, it’s just – you read the words, or hear the persons voice, and it might as well been a drink or food order.  But then you read it again, and again, and again. And you realize, holy shit – this is not good.

Suddenly this perfect night has turned into a nightmare.  My beautiful first born girl has had another seizure, and I was not there! I text Robin that I am sorry, that I am on my way, and ask if she is okay.  She explains how she is mad, and I totally understand.  How can this happen to our Amalea.  She already is blind in one eye and has to deal with that and all the anxiety and pain that comes from being different.  Now, on top of that, add a bitter serving of spontaneous suffering – out of the blue seizures that she (and we) have to worry about happening at any given moment.  You can’t even begin to imagine the anxiety that poor girl must feel day in and day out.  It’s difficult to even manage.

But Amalea might be one of the most resilient people I know.  She bounces back like a spring, and often with more vitality than she had before.  It’s amazing. She is amazing (and I’m not bragging: do you really want your child to be blind in one eye and have grand mal seizures? probably not. I don’t wish it on anyone).  But often I wonder how much one little girl has to endure in a lifetime, let alone a childhood.

Sometimes I plead: Please, god, give her a break.

But then I come down off of the parental cloud we often find our selves floating in, surrounded by a thick fog which prohibits us from seeing anything else in the world except our child and their flaws or problems or suffering, and I come down off that cloud and things clear and I am reminded how fucked up the world is and how good we have it.  We live in a safe, clean, comfortable home. We have all the pleasures that a middle class American family would have.  We are able to provide for our daughters opportunities to be educated, not only in math and reading, but in science, art, music, dance, etc.  We live in a beautiful location where there are tons of parks to run free and play at.  There are trees and clouds and rivers and bridges, city life and country life intertwined in a perfect dance that we get to experience.  We have it so, so good here.

We are not being shot at by police officers trying to keep the peace by eliminating us.  We are not being bombed by our neighboring country.  We are not being hunted by militia armies, trying to kidnap our children and make them into child soldiers.  We are not hiding in our homes, afraid of contracting diseases that could kill us.  We are not walking miles and miles in hopes of getting clean water for a single day.  Most days, our children are perfectly healthy, able to function normally and we do not have to worry about taking care of any sort of special needs or disability.  Our children can walk.  Our children can get themselves dressed and put on shows at the end of the day where they sing and dance and fall over each other and laugh until they almost pee themselves (okay, pretty sure they DO pee themselves).

We just have to live with the stress and weight of the unknown seizure occurring from time to time.  I’m not trying to make light of it – it sucks.  But at the end of the day, I am thankful that this is currently all we have to deal with.  I am thankful that Amalea is ok, that she is currently sleeping and will most likely awake in the morning refreshed and ready to once again explore the great wide world out there with that great big toothy smile she always has and that contagious laugh.  God, I love her so much.  I love them all so much.  Life is good. Today was still a good day, full of all that life has to offer… the good, the bad, the ugly – and a little slice of heaven if only for a few minutes on a grassy field playing soccer and playing with family and watching airplanes.

May the light continue to shine in our family.  May we find joy in what we have, and never forget how much we have. We have each other, and these long seemingly uneventful days are blessings that are worth smiling over; even raising a glass to and cheering out loud.

And finally (stop reading if you don’t like foul language – you’ve been warned)…

Fuck you seizures.  You suck.  You can’t hold my little girl down.  Seriously, Fuck you.

cropped-cropped-IMG_0444-e1356041036467.jpgThis photo that you see on this blog, and at the top of this post, is my oldest daughter, Amalea (the one with the seizures) at her most favorite and freeing spot in the world: the beach. Fly on my beautiful angel.


One thought on “The shaking that will not break us.

  1. Cynthia L Krill

    Wow, Jim! I came upon this site quite by accident (as usual) but not by accident…God knew I needed to read this…I, too, wonder why we can’t understand why these things happen but like you am sooo thankful for what we’ve been given…all I know is God gives more Grace as the going gets harder & God knew you & Robin are the parents who can deal with these tough situations…Ami has been given more Grace as well. I believe her life will count big time in helping alleviate the pain & suffering so many have to go through. I love you for you honesty & I pray God will always help you to express yourself freely…I pray Ami will eventually outgrow these seizures & thank God she is able to fully enjoy herself apart from them! I can see her toothy smile & hear her contagious laugh & look forward to being with her at Disneyland. Thank you for sharing so we can truly know you! I love you, my son! God will give you whatever you need to meet the challenges of the day! xo mom


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