Wednesday, March 15, 2017

Night Storm: Reviving the Long Neglected Blog




The snow wasn't as bad as they projected yesterday, but the kids still enjoyed a snow day. The winds were gusty, the trees encased in ice. I know it's not safe to have frozen tree branches, but it sure makes the world outside my window glitter quite beautifully. We had a subdued, unstressful, relaxing day. At one point, there were 5 extra friends in the house playing board games and watching movies, but that was the extent of the excitement. I stayed in my pajamas and tried to work but was minimally productive.


At about 11:00 pm, there was another storm. The kind of sh*t storm that has been occurring once to twice a week for the past several months. The kind of storm that we have been weathering, off and on, CB's entire life.

As I made my rounds, doing my nightly "peek into the girls's rooms," I heard CB coming out of a grand mal seizure, and transitioning into one of her psychotic post-seizure episodes. I liken the sound of this to a bull getting ready to charge. There is a lot of snorting (literal snorting) and huffing and puffing , body rocking and a growing sense of agitation that fills the air around her until she rises, unsteady, hell bent going SOMEwhere and doing SOMEthing, but I swear she doesn't even know what it is. She is just driven by fear or hallucination or God only knows what. She only knows you are in her way and you are to be taken out by any means possible. Before I can get to her, she's careening out of her bed, whacks her hip into the corner of the dresser and nearly falls on top of me. Still uncoordinated and floppy from the seizure, she is unsteady on her feet but determined to flee from the room.

I position myself between her and the door and try, knowing already that I will fail, to calm her down. But there is no reasoning with her. There is really no reasoning with her even under the best of circumstances because of her cognitive abilities. But now, she is not herself. It isn't her. It's like the invasion of the body snatchers. I can't see her too well in the dark, but I hear her screaming and crying, and I smell the fear and the aftermath of a seizure. I kid you not, a severe seizure smells like something was burning and you try to forget that that burning was your kid's brain.

She's still on fire with this post-ictal psychosis. She's wild. She's violent. She's heartbreakingly afraid and while I am filled with compassion for her, she has no compassion for the fact that I have a face and that face can feel pain.

In a flash, I'm struck hard on the side of my head. I'm okay. Of course, I'm okay. She hits hard, but she's not a prize boxer. It's just the sting of a good smack. Before I can recover there is a sharp burst of pain in the dead center of my face. She's struck me again, as hard as I've ever been hit by her in my life (a tie with getting kicked full force in the nose by her while attempting to get an EEG last summer). I'm hit so hard, I see a burst of light in the dark room, like a momentary flash of a starburst, then feel the crackling pain. I know I'm not hurt, as in 'for real, need medical attention' hurt, but I scream from the surprise of it all and next thing I  know Dr. Fabulous is knocking on the closed and barricaded door. She gets in two more whacks to the head before I can let him in.



Let me say this, before we go any further (because some people want to hear only what they want to hear and want to know what they think they already know): CB is a sweet and loving child. She can sometimes act out, but she is generally well behaved and isn't malicious. I am not afraid of her. It breaks my heart to think that people are afraid of her, and I hope I am not feeding into any of this fear by telling this story. She is not, in general, a violent person, but I cannot lie and say she doesn't have her moments when she gets ticked off and can give you a good smack. Or throw a plate across the room so that it smashes into 10 pieces. These are exceptions, not the norm. I have never, ever been afraid of this girl. I have been afraid FOR her, but never OF her. And I'm not afraid of her this night either, because this is not who she is. She is not herself in these moments.

So, I want to make it crystal clear before continuing the story that 1. CB poses no risk to me, her family or herself, 2. She doesn't belong anywhere but here so please don't even hint around at any alternative, and 3. I am not trying to evoke any concern over me. She is the only one who deserves concern. Most importantly, 4. I neither want nor need any pity... so save that sh*t for someone or something else, please. Nothing tears down my spirit more than pity.  

Continuing on....

So, Dr. Fabulous and I take care of the business of stabilizing this child whom we love, who is no longer a child, really, but a young adult. Together we wrestle, physically wrestle with her in the dark, trying not to hurt her or let her hurt herself. The next day, I will wonder if he ever pictured his life as a parent quite like this. I didn't have a choice, but he did. And he's still here, wrestling in the dark with demons, demonstrating a love more ferocious than fear. Love that somehow keeps regret from worming its way into his mind. He's here, for me and for her, as she is screaming like someone is throwing acid on her skin, and kicking and trying to hit us. She might have gotten a few more cracks to my head... I lost count. At some point, I think I hear one of the other girls in the hall during the whirlwind. I pray they aren't hearing this upsetting scene. If they do, I'm pretty certain they won't even tell me.


Things calm down. We can finally leave the room knowing she's asleep. My face is throbbing, my head hurts, and I'm tired. I could sleep for a thousand years. I know Dr. Fabulous and I could have a mini therapy session and talk about this for 20 minutes, or an entire lifetime, but we don't. Instead, we hug each other until we fall asleep. There's such a sense of peace knowing there is one person in the world who knows everything without you having to say a word. I never need for him to read a Facebook or blog post, or explain my day over a cup of coffee.  He gets it. He lives it. And, he hasn't run away yet. Thank God, because I couldn't do this without him.






When I woke today, the ice had melted from the branches and the world was light. My face and head throbbed, but when I looked in the mirror there was not a trace of bruise or swelling. No evidence of pain for a single soul to see. Already healed, at least on the surface.



Perhaps that's why I write this blog. Why I share too many awkward stories with friends over lunch. Post with a bit too much detail on Facebook. Without these stories, who would really know me? Know my family? Know how our love for this young lady has changed us into the people we are? All the hurt and pain would be invisible. One could argue that there is an upside to that. But you know what else would be invisible?  All the love and devotion and joy we have in this family. You can't know one without knowing the other.

I'm grateful for this space to write my stories. I hope to revive this blog, and share many more. For those who are still reading, and listening, I thank you.

5 comments:

Unknown said...

Love it. Missed your entries. Welcome back

Elizabeth said...

Oh, Alecia. I can't tell you how my heart just SANG when I saw that you had posted and that Lost in Holland has been revived. I have "known" you and loved you for many, many years and have always felt we share so much with our girls. I am sorry that you had a night from hell, that your mutual love for one another enables Mr. Fabulous and you to do what you do and then find comfort in one another's arms. My heart breaks for our girls, for CB's post-ictal pain and fear. It's so good to see her beautiful face, though. I have to believe that she knows how deeply you love her and protect her. I wish you continued strength and courage.

Mom24 said...

Thank you for sharing this. I'm glad you're back.

A said...

Witnessing steadfastness and love.

Kenneth Lilly said...

I appreciate you sharing a night like this. It's such an important thing for people to know that there is such a delicate balance between a burst of physicality and who our kids actually are, and the fact that we as their parents know who they are inside. The way you wrote it was a fantastic insight.

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