In the Silence – A Story about Epilepsy, Logan, and a little Thread

Author’s Note: This is a Non-fiction Literary Mosaic Writing about Logan, his epilepsy  and a little thread. If you aren’t familiar with the Mosaic writing form, think of it as a video, or a movie, which each section forming its own separate, yet related, story. What follows is a hard-hitting, emotional, no-holds-barred look at my little guy with Epilepsy–it’s an expression of angst and celebration.
 

In The Silence

This morning I went looking

And my mischievous boy I did find

He was hiding, sleeping

A vision,

pale cheeks and dark lashes

a picture of innocence

overwhelming in its intensity

And seizing,

his left arm discernable by

the rhythmic beat of his little hand

against the Spongebob blanket.

The duality of the scene

won’t let go.

 ~~~~~~~~~

hypoxia /hy·pox·ia/ (hi-pok´se-ah) reduction of oxygen supply to a tissue below physiological levels despite adequate perfusion of the tissue by blood.

 

~~~~~~~~~

Watching your child turn blue is a paralyzing experience.

Over the years I’ve become hardened to its effects in the moment of crisis, but I have never been able to shake the blinding terror that hits me after the fact, after the crisis is over.

 

~~~~~~~~~

He showed me the Berber sample, the perfect square of crisp colors whetting my appetite for the vision of what those floors would look like.

“Oh, yeah, this is the best. It’ll stand up to it all.”

“Three autistic kids?”

“Sure.”

What about life? Could it stand up to life?

I chose the off-white combination with the stain shield and two-year guarantee.

Years later, there are stains from spills and it sags in the middle from being cleaned too many times.


~~~~~~~~~

Logan was far too quiet; in the kitchen I paused when I heard a thump, muted as if against carpet. Some part of me recognized the sound.

 “Jim!”

I yelled for my husband, who has that same sixth sense whenever he hears that shake in my voice, and we slide into a well-rehearsed medical drama, complete with terms just like the experts.

Logan is on the floor. His eyes are large and fixed, seeing nothing.

I slide in front of him on the floor, phone already out and open to the clock, poised to call 9-1-1 at the cut- off. Jim slides behind him, white and green plunger filled with Logan’s emergency meds in his hands, which are slightly shaking.

“Is he breathing?”

“It doesn’t look like he’s breathing.”

“Okay, we’re almost at a minute, counting from when I heard him fall.”

 

~~~~~~~~~

We see scattered remains of these threads in the oddest of places. From a kitchen chair where Logan left it behind after eating, to outside the front door, where it was carried over the threshold by little feet eager to go to school. Outside the front window, one thread hangs, a lone testament to Logan’s determination to push it through the crack in the top of the window, along with cups and plates and sheets of papers.

It’s his statement, his way of marking the house as his own, of discovering this place he feels most comfortable. It’s a carpet string and an eyesore to grandma, an embarrassment because that loose threads and missing carpet fibers aren’t supposed to be. A house should be orderly, the carpet goes on the floor, and never out the window.

It’s the embodiment of our home, where nothing is as it should be, but just fine because it’s ours. The carpet isn’t where it should be, the threads aren’t all in place and clean of marker doodles and stains that won’t ever come clean. The single threads, in their temporary footholds over the top of windows, on the edges of chairs, hiding between the cushions of the couch, mark individual vestiges of Logan’s mark on his world.

~~~~~~~~~

For a baby or young child who has not reached puberty, give 2 breaths and 30 chest compressions, 5 times in a row (about 2 minutes).

If the child is still not breathing, call 911 or other emergency services.

Note: If you see a child collapse, call 911 before starting rescue breathing or CPR.

 

~~~~~~~~~

It’s a minute since he’s collapsed, and Logan is beginning to turn a pale gray, more of a blue right around his lips. His skin is so pale it looks translucent, and the veins appear in complex patterns across his skin.

At a minute, we begin rescue breaths. At three minutes we call 9-1-1. We have to call 9-1-1, sometimes, but other times he begins breathing again as his seizure suddenly stops, his muscles no longer locked and unable to do the brain’s bidding.

This time I begin the rescue breathing, tossing the phone to Jim. Breathe in. Breathe out. And again.

Come on, Logan.

He looks so tiny.

Damn it, come on!

Breathe in. Breathe out. And again.

My husband watches me as I start the compressions again. I’m the one who took the training class for just this purpose. His eyes follow every flex of my muscle, and flick back to the stillness of Logan completely seized.

I think, had he realized it would feel like this, he would have taken the class too.

 

~~~~~~~~~

Logan owns this bit of thread, from the moment he realized that there was a short tuft of carpet, just begging to be pulled, to now as he gently but firmly pulls against the course fibers.

It isn’t enough that he has literally pulled up part of the carpet from one end of the room to the other, by the time he’s done he will have thoroughly learned the feel, taste, sound – anything to do with this one little corner of his world.

~~~~~~~~~

Full stop.

I can’t help trying to pet the arm gently, as if doing so would stop the harsh jerk and release as the seizure carries on.

I have to pull back, hand over my mouth and one deep breath, before I gently pull him on his left side, into the recovery position. As close to the recovery position as I can rotate his arching and jerking limbs.

He throat arches and his mouth, lips a washed out pink against pale grayish blue, his mouth begins making the small chewing motion as those muscles, too, are caught up in the seizure.

“Three minutes.”

I nod and we trade, the phone slides into my waiting hand, cold and dead, as he begins unbuckling Logan’s pants. Then his diaper. It seems so impersonal, somehow–undressing a child to give them medicine to save their life.

“9-1-1, what is your emergency?”

 

~~~~~~~~~

As he’s worked the thread loose, he pushes segments of it between his fingers, against his face, into his mouth, and back again to run between his fingertips. He will have discovered that the carpet tastes less like candy and more like the dog fur he helped himself to yesterday. There are hints of the cookie he ground into that section of the floor last week. Mixed among the flavor is the distinct texture of coarseness, the rough scratchy, resilient fibers almost defiant in his treatment of them.

Eventually the novelty of tasting will wear off and the art of feeling the string, from tip of his liberated portion to the end still trapped against the floor, will begin to take shape. It isn’t enough to simply touch the string, he will have instead painstakingly moved one, two and more fingers against the surface of the thread, pulling taut and providing the tension that produces just a little more thread, to the sound of tearing free from well-placed and earned footholds in the foundation of the carpet itself. He will grab hold with his full, grubby hand and pull, delighting in the pull, the pinch, of the thread against his palm.

 

~~~~~~~~~

I watch with heavy eyes as Jim carefully inserts the plunger before I focus again on the words I am telling the operator, one hand straying to wipe away the bangs from Logan’s forehead as I talk.

“…male, epileptic, he’s in a grand mal but it started out as a partial. I don’t know if he hit his head. I started rescue breathing at a minute but had to stop because he went into the grand mal.”

I recite the words I know too well, eyes already straying to the door.

I leave Jim with Logan as I get up to open the front door and my lip trembles before I take a deep breath and push the fear away. I don’t have time for it right now.

I hang up with the operator so that I can put the dogs up. One time I forgot and they weren’t happy about the EMTs crashing into their house.

On my way back through the kitchen and into the living room, I realize that one of the boys left a dirty sock and his pajamas in the middle of the floor. I pick them up and my eyes stray to Logan, whose whole body is jerking now.

Jim is curled over him, cooing in his ear and gently trying to wrap his arms around his flying limbs.

I look down and realize that I haven’t swept the carpet in a while.

I look out the window again and then back down at the floor. Damn.

They’re going to think I suck.

There’s cereal bar crushed in over there, and a ground up cracker behind Jim. Bright marker lines swirl in uneasy patterns here and there.

My kid is dying and they’re going to think I’m a bad mom.

My fault.

 

~~~~~~~~~

Our first time walking on the brand new carpet in our first home, purchased and bought and painfully proud of, was a statement of belonging, of taking the house for our own, for our children.

It’s home.

~~~~~~~~~

     Sounds are muted,

The edges of my vision blurs wetly

     Only one face draws my focus

His fragile breath the only sound I strain to hear

     Instead he lies small and still

Lips and fingers locked and fading

     While I in helpless study struggle, longing

Desperate keening for eyes to open

Instead

     Burnt lashes on a mottled cheek lay wetly

And then,

     The sound I long to hear

Echoes loud, wet, harsh

     Yet is so sweet to desperate ears

     His eyes, color stripped to black, do open

Shocked, pained, confused

Warmth returns slowly, awareness of Sounds; sirens sing and dogs whine softly His breath louder still

     His arms find me

Warmth and comfort

I take and give


 
 
 
 
 
Have you submitted your own special needs-themed creative expression? You may email all submissions to [email protected] and I look forward to posting more phenomenal examples of our real world, expressed, in the way only another special needs parent can express.
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Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://randidotjpeg.com/ Randi

    Wow, I’m utterly speechless. It’s so heart-wrenching but also so amazingly written that I couldn’t stop reading. Simply amazing.

    I wish you the best of luck with your boys.

    • Katrina

      I thought I had responded to you – but Randi – thanks so much for the Comment.

      I was telling a friend that when I wrote this I didn’t even think it would appeal on an emotional level, and actually thought folks would look down on me a bit. It’s obvious now, after my first round of comments came up that my secondary attempt at editing for the emotional draw made sense. I always am a bit scared that my special needs writings like this, because it is so personal in nature, is harder for people to read as a result.

      (My Facebook comments aren’t showing up here and I am sooo sad about that!)

  • http://theworldaccordingtobren.blogspot.com/ Lady Bren

    That writing style must be hard
    It is so raw

    I don’t think I could do that with what we have dealt with patrick’s spinabifida

    • Katrina

      I wrote it the first time through in segments, just the full segment of his seizure itself, and then I wrote each of the other sections to break up the tension. At the time, I really wasn’t thinking about the emotional impact. I guess over the years I had become desensitized to just how gripping and raw it is to experience.

      One of the biggest reasons I think expressing yourself, even if in a private journal, is so important, is because it helps so much in handling that compartmentalizing.

      *hugs* regarding the spinabifida with your son (?). I have other friends who have dealt with that diagnosis, and it is so difficult to imagine the worry and the surgery emotional roller-coaster.

      Thanks so much for stopping by and I hope you’ll come back to see us again. And if you think about writing up something, you can keep it to yourself or post it here *winks*

  • http://www.themediamix.com/blog Linda Yarbrough

    Well, Kat it’s a beautiful medley (mosaic) even though I know the subject is just so difficult for your family to endure. I have to say that many times through different bits I had goosebumps. It brought up all kinds of emotions: I was sad; then I was smiling; I felt your pain; and then I felt your joy. Your thoughts about your carpet while waiting for the EMTs was interesting.. and probably tells a bit more about you than you want us to know. You’re worried, even for a second, that someone will think you not a spot-on housekeeper?

    The ending is oh so beautiful and comes to life for the reader: “His arms find me; warmth and comfort; I take and give”. Probably says it all… feeling those goosebumps again.

    Thanks for sharing.

    • Katrina

      Linda – thanks so much for reposting your comment, and apologies about the previous comment snafu!

      Thanks so much for your extremely kind words. Your emotional reaction is similar to what I experienced at the first public reading of the piece. The room was silent as a friend read this aloud (it is too emotional to read it to myself, much less an audience of my peers!). You could have heard a pin drop. When I wrote it, I thought I was being too dull, too factual. But that’s the beauty of the form – the style – of writing. The emotions I felt on re-reading the piece were enough to make me want to put it down and hide it away. It left me so raw.

      I often say I’m no Martha Stewert – in fact I would probably make her cry if she came to visit. While I joke about that, I have had folks comment on my less-than-stellar skills in this department so I might be just a little — only a little, mind you — concerned about what others think about my pathetic housekeeping skills. :-) Just a little though.

      The ending was very difficult, as finding a way to end it, when even after a typical seizure you are still going through so many emotions, was very difficult. But I kept coming back to the idea that the first thing he does after a seizure is go for cuddles (after a bad one, anyway – the rest of the time he stumbles around like a drunken sailor wanting everything to be back to normal!). He isn’t my cuddler. I’m always soaking up so much comfort from the fact that he’s there, that he is letting me hold him, that it seemed a perfect way to end it. I’m glad you agree!

      Thanks again Linda!

  • http://mycornerofthepond.wordpress.com/ Dani

    WOW! That was intence.. Brought back memories from when PA had her seizures. Lucky she has only had 3 like that. Scary!

    • Katrina

      I’ve had an adult friend with seizures read that and call me in tears because it just spoke to her and reminded her of things we wished stayed forgotten. it’s scary when a child as a seizure, one seizure. So I feel you, obviously, for having dealt with PA’s. *hugs* Sometimes being a parent means going into the warzone, you know?

  • http://youturnthekey.com/ Michelle

    This moved me to tears, Kat. I can’t read it without thinking of my nephew. He suffers from seizures ranging from blank stares or blinking to full Gran Mals.

    • Katrina

      Michelle –
      Thanks so much for sharing. Your nephew has the same full range that Logan does. They are scary and horrible, and I wouldn’t ever wish them on a soul *hugs* Your family is blessed to have you there and caring so much!

  • http://www.facebook.com/allmyearthlybest Andee Anderson Dunn

    Well written – well said – takes me back to the early days with my kids {sigh}.
    We all made it – they are all over 18 now :)

    Andee

    • Katrina

      Thanks so much for taking the time to resubmit your comment – I’m sorry there were issues with my Facebook Connect at the time :-( That said … I think you capture my own sentiment…as hard as it is, this too shall pass. I am positive of that and take encouragement from others, like you, who have gone before and can assure me of that!

  • http://www.im-stillstanding.com shelley

    kat,
    wonderful piece… and unfortunately i am too aware of such an state, however luckily for us it has been a long time. Hugs to both you and logan, he is an adorable little boy.
    shelley

  • http://blog.newhorizons123.com Julie Weishaar

    I am completely speechless. “Goosebumps” don’t even begin to describe what I am feeling. All I have to say is you are the strongest woman/mother I have ever “met”. Every parent who moans and groans about the stupidest little things should read this! Thanks for sharing!

  • http://www.myyogasecret.com Rhonda Uretzky

    How I wish I could help you breathe…if only you lived closer to my yoga studio in Lambertville NJ I would love to have you take deep breaths with us for you and for Logan. Meanwhile, find your breath where you are…you have certainly found the words that touch my heart.

  • http://www.cendrinemarrouat.com Cendrine Marrouat

    Dear Katrina,

    You have a way with words that is absolutely powerful and mesmerizing, a rare talent of which you are probably not aware at all. I felt as though I was right there with you.

    This is an amazing piece of writing that really hit me hard.

    Kudos for sharing with us! Thank you!

    • Katrina

      Cendrine – Thanks so much! Those words mean so much coming from you, my friend. I call myself a writer, but being able to inspire and empathize, to bring words to life … that is the true measure of a writer. I am always tickled when someone tells me that my words have done this for them. Like many writers, I rarely think I’m capable of doing this – so the constant feedback of others is how I can tell if I am actually making a difference, however small.

      Thanks again, and I’m glad the piece hit you hard – those who haven’t yet dealt with Epilepsy (even those who have) have told me that the reality of the piece is both a horrible and awesome thing. (of course I prefer the awesome statements, but this is a hard read so I get it!) *hugs* to you – since i know and admire your poetry your words mean a great deal to me!

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  • http://www.lovingmissliz.wordpress.com Jen

    I read your mosaic and it took my breath away. My daughter has multiple medical needs, including epilepsy, and we have been here many times. I am usually the one administering the medication while my husband lets the paramedics in. And it’s true that you think about the state of the house when the paramedics are coming. There’s not much else to do when you’ve done all you can to help and you’re just waiting for them to come. I think I may try a mosaic, it’s an interesting form of writing. Well done. You really caught the breathlessness of these moments.

  • http://www.cendrinemarrouat.com Cendrine Marrouat

    Katrina,

    You have written quite a masterpiece here.

    “I recite the words I know too well, eyes already straying to the door.” – This little sentence could stand on its own. It is amazing.

    However, the climax of your story is this: “I look down and realize that I haven’t swept the carpet in a while.” – The mother who tries to cope and still finds the time to feel guilty for something she should not be allowed to take responsibility.

    Not only have you left me speechless, which is rare, but you have also helped understand better the challenges you must go through on a daily basis. And for this, I thank you from the bottom of my heart.

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  • http://www.ollibean.com Lauri

    Wow, that was incredible. Your writing is beautiful- honest, touching, gripping- I felt as if I were there with you, yet also reliving some of the more traumatic scares we’ve been through. The honesty about your thoughts when looking down at the carpet is perfect. I have thought of similarly irrelevant things when in the throws of a crisis. I think it’s a coping mechanism in some ways..let’s your mind leave the terrifying scene you’re in the middle of. this is just brilliant, thank you for sharing such an emotional experience…My son hasn’t had anything like this happen in 5 years..and most desats occured when he was under 1,he’s been through a lot of scary surgeries, but these experiences are different. But, if he coughs or makes a strange noise in the night or the backseat of the car for some reason, I still have those other experiences in the back of my head.. Thanks again for writing such a descriptive and beautiful piece.
    Lauri

    • http://katscafe.org Katrina Moody

      Aw – thanks so much for your comments Lauri! When I write like this it’s with a depth of emotion that is sometimes hard to verbalize, because I am reliving some of the hardest, worst moments of my life every time I wrote, edited, re-read, or looked at that piece.

      With that, though, comes a stark honesty that you can only remember as being a little weird after the point … at the time I wasn’t thinking how insane it was for me to be worrying about the carpet or the house, only that in a minute my house would be filled with people who would see it … and I was so busy trying for one second NOT to look at my son, just one second to remove my emotions from the equation …

      After the fact I can see that for the coping mechanism is was, for the almost out of place yet somehow very ‘real’ moment that it was in the midst of true chaos and emotion.

      Thanks again for your thoughtful and open comments, I really appreciate it, and if it spoke to you, even better. *hugs* (ps – I am also guilty of questioning the most innocent of strange noises Logan makes because of the possibility of it being more.)

      • Bonnie Maultsby

        Katrina,That was so touching,it is hard to write this (should have waited til the tears dried!) You are an Awesome Mother (who cares about the house-’housework’ will keep,you have your priorities in order) I admire you so much.Our oldest granddaughter was just released from the hospital with seizure problems. Our youngest daughter (Rhonda)recently emailed you on FB. Feel free to email at my address anytime, if you’d like.God bless you & your precious little boys (& your husband too!) Bonnie

        • http://katscafe.org Katrina Moody

          Wow Bonnie –

          So great to hear from you and know what you think. I’m sorry about your granddaughter … what kind of seizure disorder does she have?

          I did speak with Rhonda over on FB and was excited to find out about our link. It’s amazing how small the world becomes as you are able to make connections online. We will have to hook up for a chat sometime soon – I think it would be neat to renew our connection as well. I friended you on FB – feel free to friend me back and message me any time.

          And thanks – God plays prominently in our lives – our faith is important to us! – Kat

          • Bonnie Maultsby

            Katrina,So great to hear from you,will go check my FB! Our granddaughter’s seizures are results from an abusive marriage(thankfully,she escaped alive but was left with the seizures,etc.)They are bad anytime one has them,I’m sure it is a helpless feeling you have when you see your little child having them.You’re right about God & our faith,we couldn’t make it without Him.Have a great day! Bonnie

          • http://katscafe.org Katrina Moody

            Epilepsy makes everyone feel helpless, in the moment, and afterwards as you are trying to treat it … thank you for sharing more about your granddaughter {hugs} I look forward to chatting with you more, and have a great week!

  • http://www.kimgarst.com Kim Garst

    There are no words to describe my admiration for you, Katrina. From one mother to another, I read this and it simply humbles me. Makes me realize how thankful I am for my children and how hard it must be to experience something like this. I cannot even imagine going through this. You are one of the most amazing women I know! I don’t think you realize how special you are but you are an incredible MOM :-).

    • http://katscafe.org Katrina Moody

      Aw Kim. You are one of my staunchest supporters and friends. {hugs} I’m just a mom, my friend, and I know you would rise to the occasion were you in my shoes instead, because you are a mom at heart, and an awesome one at that. But thank you. I might occasionally feel a bit overwhelmed, and I might worry about crumbs on the floor … but at the end of the day I’m a mom through and through, and I am amazed, as always, by some of the amazing people I can call friends. {hugs}

  • http://marieleslie.com Marie Leslie

    Katrina, you constantly amaze me. I felt like I was standing there with you, and still helpless to do anything but continue to pray for you and your family and make sure you know, you really know, that anyone who knows could never for a moment believe that you are anyone but a mother who knows that her first priority is to love her three beautiful boys.

    Thank you for sharing such a personal and touching moment of your family with us.

    • http://katscafe.org Katrina Moody

      Aw, Marie. {hugs} I started writing this piece with one thought in mind – how to bring people along to really experience a seizure through our lives. And somehow along the way it became so much more. Thank you, so much.

  • http://www.stingersband.com Claudia B.

    Beautiful!

  • Aileen Maher

    I can’t watch those attacks anymore. How he’s lived to be 45y.o., God only knows. Seizures…such a cruel condition. So much hardship. So much anger. So much helplessness. Yet, he has one of the strongest “backbones” I’ve ever seen in any person. God loves him and so do I.

    • http://katscafe.org Katrina Moody

      Sometimes the worst things in life strengthen us the most. {hugs} to you Aileen, as I realize firsthand how hard it is, but could never understand how it is impacting you specifically … Just know that we are here and you can feel free to vent any time.

  • http://www.adjuvancy.com/wordpress RAAckerman

    Epilepsy is not a condition with which I am eminently familiar. But, I recognize the terror, love, concern, that drip from each of these paragraphs.A powerful introduction. A more powerful message to us all- to recognize that our children are gifts from the Supreme Being. And, those gifts are tenuous.

    • http://katscafe.org Katrina Moody

      Thanks for replying Roy (even though there were glitches, LOL). My hope is that folks who don’t know anything about Epilepsy can still empathize with the firsthand account. And you are sooo right, all our children are gifts and should be cherished as such!