When you become your worst case scenario

What happens when you suddenly find yourself living the very situation that you were once grateful not to be in? When you look around and realize this is exactly what you once feared. This was at one time your worst case scenario. What do you do then?

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I happened upon this comment from 2010. Haley was averaging 1 seizure/month and I was just learning that there are people that have seizures daily despite available treatments.

I had no idea that would become us. I had no inkling that the bottom could and would drop out at any moment. I had no idea how many times this “mild” case of epilepsy would land us in life threatening, emergency situations begging for my daughter to breathe. Please just breathe. Begging for her life.

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Napping off a recent seizure cluster. Because even when you’re determined to give all that you’ve got, it’s important to refuel. Body and spirit. 

So I sat here, stunned into silence as I wondered what do I do now that I’ve become that person that I was grateful not to be? I was so grateful to have a child who despite her diagnosis of epilepsy was still living a full, happy childhood. She was developmentally on track and we were adding therapies just as a precaution against risk of delays. I naively thought that this condition would remain mostly dormant.

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And now 6 years later, coming off a scare where we were back to 50+ seizures daily for a few weeks, I don’t even know where to begin. So I guess I begin with saying that even though we are exactly where I was grateful not to be I have still found a way to be grateful for what we are. Even at her worst, at constant seizures, and coping with the harsh realities of a child that turns blue and the agitation from rescue meds and the need for constant supervision and vigilant attention to everything she does… “Is her eye twitching? Did she just jerk her arm? Was that a blank stare?” I am STILL grateful. Wholly, simply, completely. Because I have her. I know too many parents with empty arms that ache to hold their child, even through a seizure, if it meant that their child was still here. That’s not to say that I don’t have my breakdowns. I sure do. But I can’t live in them, there’s too much life to vigorously explore to dwell there. Seizing Hope, even when it’s hard.

So when I panic that we are bordering on feeding tube territory, and cognitive regression and losing skills like speech and she can’t walk steadily I will not get bogged down by fear and frustration. I mean, I will. But I won’t stay there. I will remember to be grateful. I will be grateful that I am strong enough to catch her as she collapses right now. As she grows older and bigger that may not always be the case. I will be grateful that despite the seizures she shows a tenacity and resolve and spirit that leaves me breathlessly in awe. I will be grateful for the friends and family who rally to support us. The ones who light the dark, and when they can’t be enough light they pull up a chair and will sit with me there in the dark until I’m capable. The ones who let me beat my fists against the wall and wail at the unfairness.

 

And I have learned something incredibly valuable. I have learned that when what you thought was your worst case scenario becomes your life you still get the chance to live it. And somehow when you get there there will be new things to fear, new lessons to learn and new joys to be grateful for.

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Haley, simply happy and excited that she lost a tooth, with no hesitation or care that the tooth was loose because of the clenching during so many recent seizures. Just grateful that the tooth fairy is coming.

7 thoughts on “When you become your worst case scenario”

  1. Somedays it’s hard to be thankful when they suffer so much. I’m to my knees with grief so often mourning the life I wish he could have. Free from seizures with his whole brain and talking my ears off. I’m in this place very often but during the good times I forget, just a little. Because I’ve learned to still be happy for those moments when we have them because they can and have changed. Stefan didn’t have grand mals a year ago. I have seen that worst case scenario as well. That place I was thankful not to be in. I wish we could both go back. As usual your words hit the nail on the head. ❤

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  2. As I sit here wiping tears away, I want to thank you from the bottom of my heart for your words. They are so close to my own words, many I only feel and haven’t spoken.
    My son Zack, who will turn 17 this month has a rare form of epilepsy called Lafora disease and like your daughter, he can experience multiple seizures daily, up to 100. We’ve seen a steady progression over 7 years which started with absence seizures every couple of months to where we are today. Zack is unable to walk or speak and needs assistance with every aspect of his life. His body twitches to the point where he can’t use a mouse on a computer or write.
    That said, he’s a boy of amazing spirit and along with his support group of family, friends and church community, he’s managed to bring inspiration to so many around him. I don’t stop to feel heavy hearted or down for long but it does creep in and I accept it and move on. I don’t know what Zack’s future will bring but like you said, I’m somehow grateful and feel blessed that I have Zack in my life. Every moment I have with him, every smile or laugh is affirmation that maybe through all his struggles, through our struggles, we’ve found something magical, something that so many never find. Something real.
    Thanks again for your amazing words.

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    1. Our children truly are gifts. Even if we unwrap the differently.
      I have no idea what the future holds here. Haley is like a yo to with periods of regression and decline followed by more stable periods (by stable at this point I still mean daily seizures but 5-10 instead of 50-100) All I know really is that I’m grateful for the chance to love her every day.

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  3. So heartfelt; love and hugs to all you families living with your “normal” that constantly changes. Thank you for sharing.

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