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.

Two Decades: A Belated Birthday Post

Time for the very belated birthday post for my oldest 'little girl.' 

Miss CB turned 20, and my world is officially rocked. Two decades... holy wow. 

She had a sleepy start to her day and spent the morning chillin' and eating all the foods that she loves. Then we had two rounds of cupcakes and Happy Birthday singing and visits from some family. I'm not sure CB registered that it was her birthday necessarily, but she does know when she is surrounded by love and well wishes. 

I remember the time shortly after CB was diagnosed and she went into Early Intervention. She was diagnosed at 2 1/2 so she stayed in Early Intervention for 6 months until she turned three. They didn't come to the home at that time, so I would drive her to the White Oak School where she would work for an hour with her Interventionist, Sandy. I loved Sandy.

CB would sit in this little wooden chair with a strap that went across her waist to keep her from shimmying out. There was also a tray in the front which helped keep her contained and allowed Sandy to present things to her. CB would fight against this whole contraption at first... for weeks actually.  As mellow as CB is now, she was a Tasmanian Devil when she was younger. Non-stop movement, running and mayhem. She never sat still unless she was sleeping, and always needed constant, close supervision. Sandy put some headphones on CB just to provide some pressure on her ears and muffle the noises, which she liked. I still can see her, this little girl in a dress with long white-blond hair and thick bangs with these giant 'old school' headphones on and strapped into this chair flapping her hand and humming. She was so stinkin' cute.

So, Sandy was trying to teach CB the concept of handing something to me in order to get a treat. For some reason she was into raisins at the time (hasn't touched them since!). So we had this empty mini Sunmaid raisin box and we would spend all freakin' hour trying to get her to hand me that empty box independently so I could put a raisin in it. The whole thing was supposed to prepare her for working with a PECs system which is when a child gives you a small picture of the item they want.

Anyway, (this is becoming a long pointless story) we did this sh*t for weeks. And when I say weeks, I actually mean months. "Give to Mommy... Give to Mommy..." I'd say in a sing-song voice, over and over again with my hand open and outstretched as she completely ignored me. 

"Give to Mommy!!" It was a lesson in patience for sure. Months upon months we tried to get an almost 3 year old who wouldn't look at me in the eye, or speak, or follow any simple directions to give me a little beat up raisin box. It sounds really comical now, but at the time it was, like, the major goal of my life. 

Then, one day... she handed me the box. Boom, just like that. It all just clicked. Sandy and I were laughing and crying at the same time. You would have thought we just won the lotto or something the way we were carrying on like crazy people. And I was only supposed to put one raisin in there but I stuffed that sucker full because that was the best thing I'd seen in a long time.

That was a moment of pure parental pride.

So, I'm not sure where I 'm going with this story except to say Thank You to my beautiful first born. Thanks, CB, for teaching me that in a world of Facebook bragging and competition and comparing and one-upping and keeping up with the Joneses, that every small victory matters. Every child does amazing things in their own time and at their own pace. Everyone has something that can be celebrated. Thank you for keeping me grounded right out of the gate.

And thank you for working so hard to do all the things that came so easily to other kids. You WORKED for it, girlfriend! And look at you now, all grown up and totally able to hand me PECS cards and all kinds of other stuff I don't really want to have handed to me at 3:00 am or while I'm in the middle of cooking dinner. But, that's ooooo'kay. 

We've accomplished a lot together over the past two decades. We're actually not a bad team. 

I am proud of you for all that you've done and all that you are.  I am proud to be your Mama. I'm proud to call you mine.

tHERsDay: The Guardian

I triple check the forms, finding and correcting errors, re-reading the long and complicated directions for the umpteenth time. When I am finally (relatively) certain I have done everything correctly with the pile of paperwork in front of me, I secure the stack together with a paper clip and write a $200.00 check to the County's Surrogate Court. I have spent a total of four days on the paperwork alone - two hours just this morning in review. The entire process of just completing "Step One" has been two years in the making, 99% of that time due to procrastination.

As suggested, I am hand delivering the paperwork instead of sending the packet certified mail. I make the 20 minute drive, a straight shot down a busy four-laned pike filled with lights and lined with endless strip malls. I am a little edgy, almost nervous, and slightly sad... all of which are very silly emotions to have over filing paperwork. Perhaps it's because anything to do with  the legal system makes me nervous. Even when I see a cop car, or walk through the security detectors positioned at the doors of retail stores, I get a case of the cold sweats. Maybe I always feel like someone is gonna see right through me and know I'm not as good as I seem. Or maybe, I'm just weird.

I park around back and try two different entrances before finding the right building. I get my purse searched and walk through the metal detector (cold sweat!) then head for the Office of the Surrogate Court. This is the place where you go for a great many things, one of which is to petition for Legal Guardianship of your adult daughter who cannot make decisions as a fully emancipated adult. I am here, weeks before her 20th birthday, to start the process of taking away all of her legal rights to make any decisions. I will forever be her decision maker. Plenary Guardianship, they call it.  The fact is, if I don't do this, she is screwed... because she can't make any decisions for herself. So I'm doing what I should have done almost two years ago. I haven't done it yet because it's a long, complicated, daunting, somewhat expensive process.

I haven't done it until now because above all, it just makes me sad. Not that surface sad, like "Oh yeah, that's sad."  It's like a deep, deep, profound sad. The sad that sits in a pit of unresolved grief. The sad that has no bottom. The sad you never acknowledge you have until you're standing in the waiting room of the Surrogate Court with your stack of papers and your sweaty palms and your $200.00 check and your goofy fake smile and your string of dumb questions that are just filling up the space between you and the nice administrative staff who assures you that they will call if they have any questions.

Step One is completed. The papers are filed. Soon, I will receieve a certified letter with a hearing date and yadda yadda. I try to feel a sense of accomplishment for this huge milestone, but all I feel is a little empty.

I drive back home and half way there I figure I'm probably going to start to cry - and almost do - but then stop myself and just decide to turn up the radio and sing some stupid pop song out of tune instead.

tHERsDay: Purple Day

Today is Purple Day for Epilepsy Awareness.

So here are some things I'd like to share:

* There are TWICE as many people living with epilepsy than people living with Multiple Sclerosis,  Cystic Fibrosis, Muscular Dystrophy and Cerebral Palsy combined.

* Epilepsy has no cure.

* The medications used to control epilepsy have nasty side effects.

* Often, epilepsy cannot be controlled, even with meds.

* At least 1 million people in the U.S. have uncontrolled epilepsy.

* 1 in 25 children under the age of 5 will have a febrile seizure (fever related).

* You can die from epliepsy. Risk of SUDEP (Sudden Unexpectant Death In Epilepsy) kills about 1,000 people each year. Another 42,000 die secondary to prolonged seizures, or Status Epilepticus.

* People don't swallow their tongues during a seizure. Please PLEASE never stick anything in a person's mouth during a seizure. Learn More About Seizure First Aid HERE.

* Seizures suck. There is no silver lining on this. Sorry.

This has been a Purple Day Public Service Announcement on behalf of CB and the 62 million individuals world wide living with epilepsy. 

Thanks for reading!

tHERsDay

Mother-Daughter Selfies From the Autism Walk

Mammos and Stuff

Well, today I finally did it.  I got my first, and long overdue, mammogram.  You would think my catalyst would have been the Breast Cancer Survivor story I was assigned in October where I interviewed 8 women who had battled breast cancer.  Sure, that planted the seed.  Then I interviewed another woman for a local publication, a woman I know from my town.  Another seed, but no appointment.  Then I read the story about Amy Robach getting her mammogram live on T.V. to save a life and how it did - it saved her own.  She was diagnosed with breast cancer too.

I read that, picked up the phone and made the appointment a few days ago and...



DONE!

It actually wasn't bad at all.  I mean, three natural childbirths, nursing 4 children, an episode of mastitis, and my most recent escapade with a herniated disc in my back?  Yeah, this barely made it on the "slight discomfort" scale.  Or maybe those  suckers are so beat up that they have no life or feeling left in them. Who knows.

My Breast Cancer Survivor article can be read here in Suburban Family Magazine. It looks WAY better in the print mag - laid out really nicely with cute pink graphics and color blocks for each story plus photos. I don't know, the wall of straight text on the website is no comparison!

****

CB had a seizure last night. After I arrived home from a little "girls night" I found her mid-seizure and stayed up until almost midnight to be sure she was okay.  I remember those days when the doctors thought she'd outgrow her seizure disorder.  I'm thinking that's not happening here.

But, as always, she bounced back today and did a good job at Tink's swim practice.



I have  a weird weekend of a formal gala event and my grandfather's memorial service so despite the fact that I still have work to do, I think I'm gonna try to actually get to bed by 10:00 tonight.  Dr. DiFabulous already fell asleep at 9:15 pm. It's been that kind of week.

tHERsDay

On the eve of CB's 18th Birthday there are a lot of things I could write.  However, I'm feeling a bit non-poignant tonight.  CB wasn't her best this evening.  Certainly there have been worse days. She didn't break an expensive, flat screen TV or paint the entire house with the contents of her diaper.  It was just her moodiness... her inability to let me know (or even know herself) what she wanted. That, coupled with the fact that Thursdays are a "shuttling back and forth night" with after-school activities, just made annoying things much more annoying.

I kept thinking "Man, I'm so glad today isn't her birthday," mainly because I was not having peaceful, awesome thoughts about Autism today.

*****

I wrote the above earlier tonight.  I'm returning to the computer after rushing into CB's room following a big "Thud" where I found her on the floor in the throes of a grand mal seizure that had knocked her out of bed.

I thought about how much I hate seizures and then I thought again: "Man, I'm so glad today's not her birthday."

But it's the eve of her birthday and after 18 years so little has changed.  I'm still watching seizures.  I'm still sitting vigil. I still have yuck days in between the ones where I have everything all figured out. Yet, there are more days I have things figured out which has been the biggest change of all.

I had different plans for tonight's series of "The CB Diaries." A story about a gingerbread cake.  I just don't have it in me right now, so I'll tell it another day.  It's 11:00 and I'm going to go to bed to pretend that I'll actually fall asleep.

Since it's tHERsDay I will just randomly shove in some old photos I found of CB with baby Tink. This was June of 2006 and CB was a big sister for the second time.



These pictures have nothing to do with my post, but they make me happy.

tHERsDay

CB started the morning righting herself from last night's seizure.  

How she bounces back so quickly I'll never know.  I suppose she's used to them.  

I wish she'd let me in on her secret.

On Febrile Seizures

I was completely taken off guard the first time CB had a febrile seizure.  She was 16 weeks old and weighed a little over 10 pounds.  I remember having no clue she was even sick or feverish. I was taking her out on a walk in her stroller on a warm September afternoon. It was an ordinary day, as they always are right before you are blindsided.

One in 25 children under the age of 5 will have a febrile seizure.  I recently wrote an awareness-raising piece on SheKnows offering febrile seizure facts, information, and first aid.  I hope you read it and, more importantly, pass it on to other mothers with young children.  You can jump down to the bottom of the post for the article link. 

Below is an account of CB's first seizure; an excerpt from my nearly completed memoir about unexpected motherhood. 

****

...Sitting in my daughter’s stroller, wearing her clothes, was a baby with features twisted into someone almost unrecognizable.  Her body was a plank of wood, neck arching backward, chin pointing to the sky. Her arms were folded at the elbows like a skiier tucking in their poles with fists the size of silver dollars clenched into tight, vibrating knots.  Most disturbing of all was her face. Her skin had gone ashen and her gummy little mouth looked like a ventriloquist's puppet, opening and closing without sound.  Her eyes were rolled back so far that her blue irises were lost somewhere on the other side of her skull.  All that remained of her hallmark azure eyes were two alabaster marbles.  The only blue I could detect was the soft ring painted by anoxia forming around her lips; lips that sucked the air like a fish on sand.

Panic is an interesting feeling.  It pierces you with a volt of electricity and either mobilizes every cell in your body or paralyzes them.  It can jumpstart you into herculean action or unravel your mind like a ball of yarn.  My panic didn’t rise within me like a deluge, but crashed upon me like a tsunami and I struggled to right myself in its undertoe while the cold waves numbed my emotions and movements.  Through a fish eye lense I fumbled with the safety buckles around the waist of a 16 week old baby the size of a doll.  A voice was screaming loudly and though I knew it to be mine, it felt entirely disconnected from my being, as if two nightmares had collided and I could not distinguish which was mine. The neighbors heard my cacophony through their open windows as I freed her with trembling hands and lifted her tiny rigid body into my lap, cradling her the best I could though she shoke violently from head to toe... 

****

... I waited to hear the distant sirens slice through the still air.  Waited for the convulsions to stop.  Waited on the red brick stoop of that row house, the crumbling mortor scraping the backs of my bare legs.  Waited in that dense parcel of time that panic slows down into sludge.  I waited and waited for an ambulance that never appeared. Thirty-five minutes after a neighbor placed the 9-1-1 call, still no sirens echoed down the alley, no lights blazed heroically through the narrow city streets and the seizure’s ferocious grip continued without any sign of waning.  

This wasn't stopping and no help would come.

Dread filled me with helium and suddenly I was floating above the red brick steps.  I watched myself from above, a new mother whose pre-pregnancy jeans still did not fit, bent like a comma over a baby whose soul looked as if it were being wrestled away from her.  An eerie calmness fell as I realized that I was truly watching her die.  Complete numbness shrouded me in those moments I waited for a rescue to never come and a seizure to never relent.  Numbness, as her parlor changed to the horrid color of still born babies. A frantic goodbye crescendoed in my head. A goodbye to a little girl I hardly had the chance to know but loved more than I ever believed was possible.  This, I thought with the calmness of a corpse, was the end and so I released a thousand silent I love yous like white doves in to the cloudless dome of sky and hoped it would carry her up into the heavens...

****

...I had always fancied myself as being calm under pressure and thought I’d stride through the sliding doors of the E.R. and down the slick tiled hallways poised and efficient. Instead I ran wildly, hysterically barking at the first person who made eye contact with me, exuding all the dignity of a crazed mother bear protecting her cub.  I honestly don’t know if that woman was even hospital personnel but she must have called a doctor because suddenly a tall young man with thick jet black hair in a starched white coat was in front of me with his arms out-streched and I was reflexively passing my baby's spasmatic body to him like a football.  My arms stayed cradling the empty air for the next few moments before hanging impotently at my sides.  

My baby disappeared with that dark haired stranger who ran down the hall followed by a flock of nurses in teal scrubs.  I saw a pale curtain with a faded pattern of dancing teddybears pulled across the doorway, the metal rings scraping across the steel curtain rod with preciseness.  With that efficient motion, I lost sight of the one being I loved most in this world and was escorted to a waiting room where a congregation of people cleaved from their loved ones were left in rows of hard plastic chairs to silently pray to gods and doctors.   

****

You can find my article Febrile Seizures: What Every Mother Should Know 

on SheKnows HERE. 

The Journey

"Hope is not the conviction that something will turn out well

but the certainty that something makes sense

regardless of how it turns out."

~ Vaclav Havel

It has certainly been a journey; a journey that continues.  Yet, I've traveled long and far enough to look back at it and reflect on where I stand now, close to 20 years later.  I look ahead and see light, hope and possibility while also acknowledging the inescapable worries and inevitabilities, both real and existential, that will largely be out of my control.

I examine that twisted road behind me. The first time I walked that path was while I was living it.  The second time I look at it in my rearview mirror and this is where I create the memories into a story - my story. A story of unexpectedness - an unexpected pregnancy, an unexpected diagnosis, the unexpected shame of divorce and clinical depression. The unexpectedness of starting over again when I thought no one in their right mind could ever love me, nor I them; of finding a soul mate in a long-time friend, and the surprise of three more girls I thought I might not ever have the opportunity to bring into the world.

As I collect the unraveled twine knotted behind me for miles down the road, I re-weave this story and I am in charge of what it all means. I pick up the shrapnel and reassemble the pieces; cracked and broken, worn and weathered. I take those fragments and make something whole.  Make something of which to be proud. Something beautiful, original, and strong enough to never break again.

 

Two decades ago I was a young woman with a history of screw-ups who finally set herself on the right path.  I had a life full of expectations and promises made to myself, but nothing at all went as planned.





I've written this before, but I love repeating myself:  My life is nothing I ever imagined and everything I dreamed it would be.  I wouldn't change it or trade it for the world.

I learned it all with one single soul by my side - my daughter, now racing toward 18 no matter how I try to slow the world on its axis.  A silent witness to it all, and my source of growth and inspiration.

I see myself in this picture taken in 1995.  A tired, 25-year-old, new mother holding a three week old infant.  Because I didn't know or expect to be pregnant as an unmarried woman practicing birth control, I didn't even realize I was pregnant until I was 5 1/2 months along. This gave me exactly 3 1/2 months to get used to the biggest life change I've ever had.

Twelve weeks after this photo was taken, still adjusting to the unfamiliar world of motherhood, I'd be watching my baby have her first, 75 minute long grand mal seizure and be thrust into an even more unexpected world.

I was so full of hope that things would be okay after that first seizure, then the next and the next.  So full of hope after she was diagnosed at age 2 with moderate cognitive disabilities and autism.  So full of hope that she'd outgrow her epilepsy one day and we'd "save her" from that Autism thing.

Hope died when reality set in years down the road.  Or, I thought it died when I had to face the pragmatics of our future.  But hope didn't really die, it only changed. Writing my story in this blog and in my near-completed memoir helped me understand this.

I'm still filled with hope, it's just a different kind of hope. It's hope that I will be strong enough to love and lose, soar and crumble, and learn to live big and courageous. I'm filled with that hope because I know who I am and who I love and where I've been and how everything makes sense in a bigger plan.  This gives me hope for me, my family, and most importantly for my eldest daughter as we carve out her place in the world and fight for everyone to see and accept her as the lovely soul she is.  Hope for where we're going; to know that whatever else life brings to us, we'll find our meaning, re-weave our stories, and always make something beautiful so long as we're all in it together.

tHERsDay

{AM}

{PM}

With the exception of the first nine months of her life, I've never known CB not on an average of two anti-epileptic medications.

Down The Rabbit Hole

I read something over at a moon worn as if it had been a shell the other day.  Something that made me both heart-broken and infuriated.  Elizabeth (the blog's author and amazing mother of a very involved, specially challenged teenage daughter)  encountered an individual so self-centered and ignorant it made me want to scream... scream so loud they would hear me all the way in San Diego.

Encounters with these types of sub-humans - heartless and obtuse - are few and far in between.  Thank God.  They are, I often believe, simply the same person trading faces... with the same withered spiders rattling around where compassion should be.  I think about my own encounters with such people:

The woman in the softball bleachers barking at me to shut my 8 year old daughter up because she was too loud.  (I recall how she looked at me baffled when I told her "Sorry, my daughter has Autism."  She snapped "Well, I don't know what that is!" and brusquely turned her back to me.)

The countless old bitties at restaurants stating loudly that "Somebody needs to learn how to control their child!" when CB has a meltdown during dinner.

The LabCorp bitch who told me she was tired of 'mothers like me' expecting special accommodations for their Autistic Spectrum children.

The manager at Rite Aid who snapped with impatience and hung up the phone on me as I tried to solicit her help - hoarse from the flu, sobbing and exhausted, with my daughter half-comatose in the back seat of the car just discharged from a 4 day stint in the hospital.

And more recently, the mother at the playground who scooped up her children with great vocal fanfare  and left because CB hit one of them.

I also remember one time when CB was 5 and I was in line at Sears.  She began having a violent seizure in her stroller and I bent down to tend to her while the cashier was ringing up the person in front of me.  My body was blocking everyone's view of CB who was so small at the time in the little red umbrella stroller.  Plus, I was quiet and calm so no one knew what was going on.  When it was my turn in line, the male cashier snapped to my back "Ma'am... Ma'am you're next! MA'AM!!" with the exasperation and impatience of a person who feels like they have so many better things to do but in reality, don't.

As I stood to face him, it was as if I drew a curtain on the situation at hand. I saw the moment when his eyes locked on CB's distorted face as she twitched and spasmed and shook; eyes rolled back and body shaking like an earthquake.  "My daughter's having a seizure"  I explained with eerie calmness.  I saw him freeze in terror, his mouth dropping open.  He stammered out a string of profuse apologies as I pushed the stroller with her seizing body up to the desk to pay for my wares.  He continued his nervous apologies, offering lame attempts to help - hands trembling, words careening into each other like bumper cars.  I stood there and watched him blankly as he tripped over himself without offering him a single word of comfort or forgiveness.  I just let him tumble and tumble over himself right down the rabbit hole where he gained a rare glimpse into my world.  His guilt at being initially rude was swallowing him whole, and I let it.  

I paid him as CB came out of her seizure and felt like I was purchasing his humble pie.  The warm glow of something resembling smugness sustained me as I accepted my plastic bag.   Still withholding his need for absolution, I turned from that gaping maw where all his words had clattered onto the floor like a fistful of marbles.  All that I had left unsaid was more than either of us could handle.

tHERsDay

A copy of CB's most recent neurology report came in the mail today, on CB's first day back at school.  I added it to one of the thick manila folders that chronical our adventures together over the past 17 years.  As I scanned over the report, an alphabet soup of words, the old familiar tune sang:

 chronic static encephalopathy..., psychomotor retardation, severe ....status epileptus... generalized tonic clonic seizures... 

Blah blah blah.  The most painful parts of our lives whittled down to three pages of black ink on a crisp white page.  And while it tells the story, it tells hardly anything at all.

The report wrapped up with the summary of genetic testing, which I read with more care:

Angelman's testing - negative
No detectable mutation in the coding regon of the UBE3A gene.
No detectable point of mutation in the coding region of the SLC9A6 gene
Rett Syndrome - negative
DNA sequence anyalsis and deletion/duplication testing of the ARX, MECP2 and the CDKL5 genes did not demonstrate any anomalies.

It was this line that stood out to me though, like the trace images you see after you stare at something for too long and then close your eyes and still see it there in the darkness:

Therefore, the etiology of the disease phenotype in this patient remains unknown.

Unknown.  

Which leaves only the guilt of what I might have done wrong sitting in the chair of an explanation.

tHERsDay: Life With Epilepsy

It's like constantly waiting for the other shoe to drop.  Waiting. Always waiting.  Like Wednesday, when she had her Meningitis vaccine and I knew that a seizure would come because they always do after an inoculation.  Waiting all night, going to bed late, sleeping lightly, but nothing came.  So, I thought we were out of the woods by Thursday -

but then the shoe dropped.

It was an uncharacteristic daytime seizure which caught me off guard.  I was alerted by her bed shaking madly above my head.  Leaping two and three steps at a time I found her done with the major convulsions and sitting up disoriented, pupils eclipsing the entirety of her blue irises.

And I saw it, clear as day.
Fear.
On her face was pure, heartbreaking fear - she was petrified and lost.

So, I comforted with the standard string of lies spoken to an agitated, scared, non-verbal little girl who doesn't enjoy being touched or comforted -   "It will be okay, it will be okay, it's okay." Yet, I didn't believe these words myself, or at least not fully, so I instead spoke the only truth I know: "Mommy's here, I'm here, I'm here."  

Somehow she found comfort in this because she was able to settle and her body went quiet and slack.
So, I filled my promise and sat by her bedside, watching her eyelids slowly drop, ushering her into recuperative sleep. Her head rested in the palm of my hand, so I found comfort too.

To Dust

There are days that go rancid scarcely before they begin.  Days that slowly curdle before breakfast is even digested.  Days where you aren't quite sure if you are going to break out in either hysterical laughter or tears as both sensations sprout tentacles under your skin, prickling the back of your throat, pressing on the backs of your eyes, gripping the circumference of your heart like strangling vines.

It all happened when we fell back to earth from the stratosphere of vacation bliss which was much like emerging from a darkened theatre after a double feature matinee and scorching our retinas in the 3:00 sun.   After arriving home late Saturday night and spending hours unpacking before falling into bed, I left the house at 8:30 am Sunday morning to pick up CB from Maryland.  Pink accompanied me as she needed to go directly to a 11:00 am birthday party after the 2 hour drive and Dr. Fabulous was going to take the remaining two girls to church.  Since Pink was invited while we were away,  I was unprepared and darted into a store en route to grab a quick gift making us late and even more haggard and harried.

Despite the fact that I would have loved to stay and gab with several of my mom friends who were hanging out there, with CB by my side the best idea for everyone's sanity (including hers) was to forgo the hyper-stimulation of the party room and make myself scarce which involved running to the grocery store for a small list of items.  The next hour in the store with CB was the usual freak show; peeling her off the floor every 3 minutes and shushing her loud moans and vocal stims that cause everyone in each aisle to shoot curious glances and part around us like the red sea.

I arrive to grab Pink from party central, but they are still finishing up cake so I hope to get a chance to catch up with some friends, but CB wanted no part of sitting in the room jam packed with squealing 8 year olds and lots of commotion so we sat on the hallway floor, away from the fun and the people, listening to the din of normal life drift down the corridor reminding me that it was all just a fingertip's length out of reach.

As Dr Fabulous arrived home with hot pizza for an early dinner,  I walk into the kitchen to see CB sitting in a massive pool of diarrhea dripping down her leg, covering both feet, and all over the hard wood floor and two separate area rugs on either side of her.

She had been home for less than 24 hours but... let the games begin!

My tummy grumbled from hunger but I had a daughter and a floor to clean so while the rest of the family ate together, CB spent time in the soapy tub and I spent an hour cleaning the floors, carpet, the bathroom, her fragile body, and then the tub where she was hosed off and bathed.  I ate cold pizza alone, after the other dishes were cleared and cleaned, standing over the kitchen sink.

The week kicked off with early risings for both CB and Rella's summer programs.  There were the usual first day bussing debacles resulting in me unexpectantly driving CB in and and picking her up and we ended Monday with another theatrical blood draw to recheck the state of her low platelets.

Tuesday afternoon we had a rough morning full of debocles and debacheries that on their own meant nothing but when strung together formed a beautiful pearl necklace in the shape of a noose slowly tightening around my neck.  After a morning of ridiculous mishaps and Murphy's Laws, we all traveled to the neurologist's office which had relocated to a new satellite hospital that was too new to show up on my GPS.  To locate the place required 5 separate phone calls with no one able to assist me as I drove for over an hour.  While on these 5 separate phone calls I was distracted in a dangerous cycle of driving and pulling over on a highway again and again with CB banging on the window, screaming,  scratching the skin off my arm, kicking the console, yanking out poor Pink's hair, and changing the radio stations non-stop while the three little ones squabbled mercilessly in the back seat.  Rella, who only picked on her breakfast this morning, was likely suffering the effects of an early rising and low blood sugar and was uncharacteristically tearful, breaking into deafening wails and rants of unfairness though hot blobs of tears every 30 seconds.

Just when I thought my head was going to explode I was able to find a woman who actually cared about my situation in the main Philadelphia office and she googled the directions from her computer and carefully read them to me line by line as I sat on the side of I-295 penning street names onto a scrap of dirty napkin.

During the neurology visit Dr. T and I had to virtually yell at each other over the cacophony of hums and noises, crying, fighting, CB's repetitive thumping on the walls like a techno drum beat without an off switch.  There were also multiple bathroom trips to derail the conversation.

Platelet count is back up, seizure activity remains the same despite jacking up her Depakote by 750 mg so now we're jacking up the Topamax and doing another panel of genetic testing.  A five hour saga for a 15 minute appointment.

Starving, the five of us flung ourselves back into the hot car at almost 2:00 pm and got lost coming home but drove through the Chick Fil-A which was a big deal because I find fast food in general repulsive on many levels, including taste.  As Rella broke down in tears again because we were  driving through not eating in the restaurant and the others started whining over the same, I flipped out screaming like a mad woman:

"Does anyone care what MOM wants to do?  Does anyone give a rat's behind about ME and MY day?  That I am hungry and tired and overwhelmed worried about CB and frustrated and I just want to get home as quickly as possible and not hang out in the bloody CHICK FIL A for an extra 30 minutes when we have an hour drive home!?!  I just want to GO HOME!"  

It was astonishing that I refrained from cursing.

My freak-out made Rella cry harder and Tink shut down and Pink get into her super-polite "Yes, Mom" mode but I felt really guilty so they ended up with 3 kids meals in their laps (another thing I loathe because it's not as economical) and they were happy.

For 6 minutes.

Once home, I sequestered them to the basement in front of 2 hours of television without feeling one ounce of guilt.  I lay on my back staring at the ceiling and tried to regroup, letting the silence caress my eardrums and tilting my head to let every thought slip out and roll away into a dusty, forgotten corner.

On the way up from the depths of emotional exhaustion I find that focusing on someone else helps me release myself from the death roll, break the surface, breathe the air, and get quite over it.  So, I called my grandfather who lost his wife of 69 years on this very day last year.  Her final day on earth, he was persuaded to leave her side by a hospice worker for a quick bite in the cafeteria after sitting vigil by her death bed for over a week.  She died during his brief absence before he even touched his soup.

We agreed he was blessed and fortunate to have had so much time with the one he loved and after hanging up the phone I resumed the motions of fixing dinner, piling the messes into tidy towers, and feeling the buzz of the family I created as it both drained and and healed me; bringing me peace wrapped in chaos.

It's like, all the crazy crap that happens on days like these just ends up blurring together into an ambiguous, amorphous cloud over the years, only to blow away like an innocuous puff of dust and all that is remembered in the end is the truth and the shine of all the ways we are blessed.

Wired

EEG Instructions

1.  Wash hair the night before.  EEG can only be performed on clean hair.
2.  Use no hair products.
3.  No caffeine 24 hours prior to EEG.
4.  Cross fingers that it doesn't turn into a disaster.



It wasn't.  A disaster, that is.  CB did pretty well all things considered.  She doesn't like laying on her back or having her hair messed with, or being restrained in any way so gluing the leads on her head was a bit rough.  The technician was an angel ... I've never seen someone work so quickly.   Once CB could sit up she was much better.  She didn't stay as still as she should have, so there was a lot of artifact on the print out, but it was just a baseline.

I liked our new neurologist.  I can always relate better to female neurologists who are around my age and are mothers of young children.  The worst matches for me are old, silver haired men or narcissistic, arrogant men... both of whom I've had the pleasure of working with (barf).

Dr. T was really thorough and we have a plan.  No answers, but a plan.  I'm feeling hopeful.

And tired.  We were at the clinic for 4 hours.  Good times.  Thank God for 2 good friends who helped me by watching two of my girls.  I am so blessed.  Blessed, and tired.  So, with that... I'm out.

tHERsDay: Sitting Vigil

During the visit to my grandmother's old farm house, 

a black barn cat sat with CB for an hour under a hundred year old tree, 

transfixed  by her fancy bead twirling,  

playfully batting at them from time to time.

Though CB occasionally shoved him away,

the cat remained.

Sitting vigil.

As CB's seizure activity spikes again I find myself in the familiar, helpless position of bearing witness. Clocking the seconds as she thrashes about. 

In the seizure's aftermath, all I can do is sit quietly on her bedroom floor 

with the stillness of a praying mantis mimicking a leaf.    

This period of sitting and watching 

until I'm certain she is asleep and will not lapse into another seizure 

has always felt so passive to me.  

Due to her tendency to flip into a violent, post-ictal psychosis 

I refrain from even touching her or speaking following a seizure. 

I simply sit vigil.

A vigil, I discovered, is a period of intentional wakefulness; 

a block of time set aside for contemplation and watchfulness.  

"Vigil" is derived from the Middle English vigile, 

which means "devotional watching."  

The Latin vigil, translates as "awake."  

It brought me comfort to know that the feeling of helplessness and passivity 

when surrounded by darkness, listening for 

the restoration of normal breathing patterns in my little girl, 

is actually far from a helpless act.  

There are many different types of vigils: 

the religious 

a form of protest

respect for the deceased or

a way to raise community awareness.

Whatever the type, it is a body and soul in action

not at rest.

Like the mountain pose in yoga, 

even in a simple, quiet stance

all the senses of the body are engaged.

A mother's vigil is nothing like sitting idly by. 

Every cell in her body 

wakeful

watchful

devoted. 

tHERsDay

The morning after a nocturnal seizure.

Late last night CB had a nasty grand mal seizure, knocking her out of bed and face first onto the floor.  I found her convulsing violently with blood oozing from her nose, spattering everywhere with each forceful exhale as she gasped for air.

After 2 minutes of the grand mal seizure and another few minutes of petit mals, I was able to move her back into her bed though her weak and shaking body was barely able to stand.  In the dark, I cleaned up the blood on her arm and face and rug.  Then I sat with her for a long time until she was safely asleep.  Returning to my bedroom, I brushed my teeth and tried to forget but my hands were speckled with red like a Jackson Pollack painting and I kept seeing its pattern on my pale flesh long after I washed it away.  Much like Pollack's canvas, I didn't know what it all meant.  

Nights like this used to make me break down, but I'm beyond crying after bearing witness to this for the past 17 years.  The tears are literally gone.  I don't know if it's strength or emotional survival.  To go on autopilot, dissociated from the worry, the grief, the fear, the ache, the guilt is probably more self-protective than courageous.  I was only too eager to fall into sleep so I could wake up in a new day and bury yet another episode in the soil of yesterday.

Sleep was not as fulfilling as I had hoped.  Rella came crawling on top of me at 2:00 am and after an hour of being unable to move under her weight, I relocated her back to her own bed.  She returned at 4:00 am and this time I allowed her to stay plastered up against my back, figuring that perhaps I wouldn't get much sleep but at least I was giving comfort to one of my girls.

Dr. Fabulous had to leave at 6:30 am so I gathered myself out of bed, nursing a chronically sore back.  I jumped into the early morning hub-bub of a school day unrefreshed and flying solo.  The three little girls woke up none the wiser to any of the drama that occurred while they slept and despite my bloodshot eyes, I don't think I appeared any worse for the wear.  We sang songs, I made pancakes, we chatted, and all was quite typical.

I allowed CB to stay in bed as long as she needed and was relieved to find her back to her "regular self" after a recuperative sleep.

I thought of how the two of us looked like nothing bad had happened only about 10 hours prior.  The shadow of a bloodstain on her carpet, the only evidence to the contrary.