Tag Archives: Michael

In Need of Nurses


by Lillian Csernica on June 18, 2016

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I’ve been meaning to write more frequent blog posts.  Life has gotten in the way in the form of being seriously short staffed where Michael is concerned.  Right now I have two R.N.s and my sister, who does have experience with hospital and in-home care.  With Michael out of school, we’re running two eight hour shifts per day.  This means I have to pitch in as well.  I’ve had to take four of the eight hour shifts, three 6:30 a.m to 2:30 p.m. and one 2:30 p.m. to 10:30 p.m.

Michael takes seven different medications.  He needs at least two breathing treatments per day which include nebulizer treatment followed by three timed sessions with a percussive therapy vest.  Diaper changes can be quite laborious depending on the nature and quantity of his output.  Michael is twenty years old, close to six feet tall, and weighs 145 lb.  He’s on the gangly side, so rolling him from one side to the other requires considerable effort.

In the morning I fully expect to need Naproxen, if not my carefully hoarded stash of Vicodin.  I’m hoping the Vicodin won’t be necessary because I have an hour’s drive ahead of me in order to attend a writer’s group meeting.

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Adding to my joy this week is a breakdown in communications with the supplier of my antidepressant medications.  I did get an interim prescription for one of them from my doctor, but there’s been more difficulties with the other prescription.  Tomorrow will be Day 3 without Pristiq.  I will either be what some people might consider manic, or I will have no patience with obstacles and no filters in place to moderate my reactions to such obstacles.

Not really the best frame of mind for giving critiques in a writer’s group setting.

On Sunday we interview yet another R.N.  I’m really hoping she turns out to be a keeper.  We’re stretched mighty thin.  Summer school starts next week, but we still need a third R.N. to take some of the load off of my sister.

All of this leads me to think about what we’ll be facing once Michael is no longer in school.  He has two years left in the County program.  Then we’ll have to find other ways to get him out of the house and keep him occupied so he doesn’t languish in bed for the majority of his day.  That’s not good for his mental or physical health.

Doesn’t do a whole lot for mine, either.

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Filed under Baclofen pump, Depression, doctors, Family, frustration, Goals, hospital, Lillian Csernica, mother, parenting, perspective, Special needs, specialists, therapy, Writing

My Personal Chariot of Fire


by Lillian Csernica on January 20, 2016

“Then Elisha prayed and said, “O Lord, I pray, open his eyes that he may see.” And the Lord opened the servant’s eyes, and he saw; and behold, the mountain was full of horses and chariots of fire all around Elisha.” (2 Kings 6:17). All around them, but beyond the capabilities of the five human physical senses, was all the protection necessary. Elisha would be no prisoner that day. His would be captors would be.”

Today I picked up my car.  Today I drove it home from the dealership.  Today I stopped at the grocery store, I put gas in the car, and I drove home.

I was not afraid.  I did not have an anxiety attack.  In fact, I was happy and excited.

I have been a prisoner of my own fears about driving for a long time now.  Almost thirty years.  It’s called learned helplessness, and it’s born of a vicious emotional cycle that includes hopelessness and depression.

Another condition I battle on a daily basis is anticipatory anxiety.  This robs the future of hope and positive thinking.  I told myself I wasn’t afraid of my driving.  I was afraid of everybody else on the road who drove like maniacs, speeding and changing lanes without signalling and coming right up on my rear bumper like they wanted to shove my car aside.  That was true enough.  I think the real truth was, I could no longer face the responsibility of being the driver.

When I was in the car accident that did in fact kill me, my driving had very little to do with what happened.  My employer had assured me he’d replaced the two right tires on the company car, which were worn down to the point of being dangerous.  He lied to me.  I trusted him, so when we loaded the car that night for the drive from Long Beach to San Francisco, I believed him and I did not check the tires myself.

“Put not your faith in princes and sons of men, in whom there is no salvation.  When his breath departs, he returns to the earth; on that very day his plans perish.”  (Ps. 146:3-4)

Five years ago I took two sets of driving lessons to brush up on my driving skills.  My teacher said I’m a good driver.  I have good reaction time and I’m good at judging braking distance.  I have driven on Hwy 17 all the way down to Capitola and back in the car with my teacher.

And yet, I still couldn’t internalize that knowledge to the extent that I would agree to pick out a car and drive it.  My husband said he’d get me a car, but not until he was sure I would in fact use it, and use it all the time.

Why now?  Why did I suddenly stand up last Saturday and say, “Fine.  Let’s do it today.”?  All I can say is the time was right, and I was ready.  We found a car that was everything I wanted, at a price we could afford.  It was raining, but I didn’t let that hold me back.  I got into the car and I test drove it so my husband could listen to the engine.  I was alert, I was focused, and I kept moving forward through the process of evaluating and the buying the car.

My car has become my chariot of fire.  Just as Divine Protection was present but unseen for the Prophet Elisha, so I believe God is watching out for me.  I may not always have faith in myself, but I do have faith in God.  Just look at what we went through this past summer with Michael’s hospital stay.  When Michael needed a priest, Fr. Ninos got there before the ICU team took Michael to be prepped for surgery.  I still don’t know how Fr. Ninos got there so quickly, but he did, and I give thanks every day that my boy is still alive and healthy.

When the depression has been really bad, I have begged God to help me get better.  I have prayed for strength and for courage and for the determination to defeat all the symptoms that have crippled me emotionally, kept me from writing, and prevented me from being a functional member of my family.

“The Lord is my  light and my salvation; whom then shall I fear?” (Ps. 12:1)

It’s time to move on.  No more thinking I’m helpless.  No more being afraid.

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Another Hospital Stay, Part 4: We’re Home!


by Lillian Csernica on September 4, 2015

Yes, it’s true.  We were discharged on Monday.  Michael is looking good.  He needs to gain back the weight he lost in the hospital, and he tires easily, but he’s in good spirits and that big grin is back.  We’ve had to replace his ketogenic diet with a formula that’s easier on his kidneys.  The nephrologist would like us to wait six months for full recovery before putting Michael back on the ketogenic diet.  He’s now on one additional anti-seizure medication which seems to be working.  He’s had a few very brief seizures, but nothing beyond the frequency and intensity he was experiencing before he went to the hospital.

I’m not good for much this week.  I’ve been reading and sleeping and binge-watching the first season of “Grimm.”  I’ve seen the occasional random episode of the show, but I’d never gotten the whole story.

Chris hired a new nurse.  We need her, because we won’t be sending Michael back to school for at least two weeks.  It’s always a little strange having somebody new in the house.  On her first day, which was also our first day at home,  the upstairs shower decided to just keep running no matter how I turned the faucets, even with pliers.  I thought I was going to have to start bailing out the bath tub through the window, but Chris managed to get a plumber to the house within ten minutes of me calling about the potential disaster.

Never a dull moment.  I think I might have that engraved on my headstone.

School is in, the neighbors are behaving themselves, and the cats are very happy to see me.  Every night there’s a competition to see who gets to sit on my lap as I lounge on the couch watching Netflix or Amazon or Hulu.  Now that I’m back, all is right in the feline universe.

I have two ten-page stories due by the end of October, then NaNoWriMo starts.  I worked on two or three new short stories while I was in the hospital.  I took a few big blank notebooks with me.  If I wasn’t writing in my personal journal, I was making notes or writing some piece of fiction.  I’ll have to devote a post to what happened as the hospital staff got to know me and word spread about me being a “real writer.”  Even in this digital age, some people still have what borders on superstitious awe toward those of us who can make the words keep coming.

It’s good to be home.

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Filed under Baclofen pump, charity, Depression, doctors, Family, frustration, hospital, mother, perspective, Special needs, worry, Writing

The Special Needs of Christmas


by Lillian Csernica on December 7, 2013

Thanks to my last post, I’ve been asked to share some of the holiday traditions unique to the traveling circus that is my family.

My husband is old-fashioned about when it’s time to buy the Christmas tree.  We get ours about a week before Christmas.  It’s a big family affair to haul out all the boxes of lights and tinsel and decorations.  We put Michael in his wheelchair so he can help too.  Few things bring me greater joy than seeing Michael’s face light up when he points to the spot on the Christmas tree where he wants us to hang the next ornament.

John loves to bake, and he’s good at it.  When we bake Christmas cookies, John takes the tray of cookies over to Michael so Michael can shake colored sprinkles all over the dough before that tray goes into the oven.  Michael is very artistic, so we let him choose between red sugar, green sugar, or the jumble of fancy sprinkles.  John is careful to leave some of these cookies out for Santa Claus on Christmas Eve.

Chris and John go to a tree farm and cut down a real live Christmas tree.  They’ve been doing this since John could only hold on to one end of the saw while Chris did all the work.  Now John can carry the whole tree all by himself.  (He could even carry Chris too, if he really needed to!)

Asking Mom what she wants for Christmas, which is a face-saving way of finding out what she needs but can’t really afford on her own. At this point in our lives, only the kids enjoy surprises.  It’s much better to give up a little mystery in order to make sure Mom is happy.

Not embarrassing my sister by making a big deal out of giving her something special. My sister is much happier giving gifts, and she does it really well.  Oh, I still give her at least one gift that relates to one of our in-jokes.  After all, I am the little sister and the brat of the family.

There are a few other holiday rituals that have evolved over the years, ones that I look forward to with a mixture of wary anticipation and gleeful dread:

Every year when we get out the boxes of Christmas ornaments, I wonder if this is the year when I should go for a Christmas tree with a theme. The magazines are full of so many great ideas. Now that I have this wonderful house with a living room big enough to have a decent-sized tree, will this be the year I achieve the style and grandeur of my dreams? My sister is good at theme trees. If we come up with a plan and I turn her loose, I’m sure she’ll create something spectacular. I also know that sooner or later John will find an ornament that just has to go on the tree, and we’ll probably end up letting the boys go wild with all of their favorite ornaments.

When it comes time to open our gifts on Christmas morning, my husband and I often exchange looks of good-natured anxiety. Who will it be this year? Who will be the one to receive my mother’s really tacky Christmas present? For a while it was always poor Chris. The crowning glory of my mother’s inappropriate Christmas gifts had to be the Garfield alarm clock that was as big as a truck tire. It’s a standing joke in the family that nothing can wake Chris up, not even a meteor strike.

Mom has this habit of finding out something a person likes, then locking on to that idea for every gift-giving occasion. My sister has gotten tigers year after year. My brother gets pelicans. Me, I’m the lucky one. Mom is always interested in my writing, so I get gifts that have to do with medieval history or Japan or living the writing life. And cats. I have so much cat-related stuff I could open a boutique. It got to the point where Chris absolutely forbade me to buy or accept any more cat Christmas ornaments. Some day I have to join a society for ailurophiles, just so I can volunteer to decorate its Christmas tree!

On the weekend before Christmas, I take John to see Santa Claus. Even though he’s been “too old” for a while now, he really believes in Santa Claus and I’m OK with that. John’s favorite Santa Claus is at a nearby mall. John is fifteen now, six feet tall and close to two hundred pounds. As we stand there in line with all the little kids who come up to John’s hip, people give us funny looks. John doesn’t notice and I don’t care. The first time we went to that mall about three years ago, I took the photographer aside and mentioned that John is autistic. The photographer was great, quite familiar with special needs kids. He and that Santa Claus have worked together for years and know how to handle just about everything. Of course John doesn’t sit on Santa’s lap, but Santa takes the time to have a nice talk with John every year when John brings Santa his wish list.

Last but certainly not least, every year I do my best to answer all the letters to Santa Claus the postal carriers deliver to me. I’m now in the happy position of being the volunteer for four post offices. (This isn’t as huge a job as it might sound, although last year I did answer almost fifty letters.)  I’ve been making my rounds, letting the postmasters know I’m at their service.

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Embracing the Pain


by Lillian Csernica on November 27, 2013

For A Lady Who Must Write Verse

Unto seventy years and seven,
Hide your double birthright well-
You, that are the brat of Heaven
And the pampered heir to Hell.

Let your rhymes be tinsel treasures,
Strung and seen and thrown aside.
Drill your apt and docile measures
Sternly as you drill your pride.

Show your quick, alarming skill in
Tidy mockeries of art;
Never, never dip your quill in
Ink that rushes from your heart.

When your pain must come to paper,
See it dust, before the day;
Let your night-light curl and caper,
Let it lick the words away.

Never print, poor child, a lay on
Love and tears and anguishing,
Lest a cooled, benignant Phaon
Murmur, “Silly little thing!”

I’ve been having running conversations with my two best friends, also writers, on the subject of improving the depth and meaning in my writing.  Both have advised me to work with and through the considerable amount of trauma I’ve experienced.  Car accidents, surgeries, family upheaval, my sons’ disabilities.  Yes, it could always be worse, but I do have some rather weighty material to draw on.

Right now I’m up against a good example of what could be an opportunity to prove my friends right.  In the short story I’m working on right now, I’ve come to the scene where the hero is forced to watch his father get eaten by the monster.  If the hero’s father had taken the hero’s warnings seriously, this probably wouldn’t be happening.  Part of the conflict between the father and the hero is the hero’s refusal to play along with his father’s corrupt business practices and participation in a major cover-up.  To the father, that translates as the son being a real disappointment to him.  As the hero watches his father suffer a really horrible doom, the hero isn’t thinking his father is getting what he deserves.  The hero sees this as the culmination of being such a disappointment to his father, even though the hero knows he’s made the better moral choices.

I’m having a really hard time writing this scene, even though I understand it and I’ve got the action blocked out on paper.  Why?  Because November 18th would have been my father’s birthday.  Daddy died seventeen years ago, one month before Michael had to be delivered by emergency C-section.  This is a very hard time for me.  Thanksgiving is all about family gathering together and being grateful for who’s there to share the feast.  My father never got to see his grandsons.  I know how much he was looking forward to me having children.  Daddy would have make a terrific grandfather, taking the boys fishing, playing games with them, and best of all, going bowling.  Every time we take Michael and John to the bowling alley, I feel like Daddy’s spirit is there with us.

So you can see the trouble I have with making my hero watch as his father gets eaten by a monster.  It’s easy to kill characters you hate, characters that might be based on people in real life who have given you reason to dislike them.  It’s much harder to kill characters you love, especially when they’re based on people in real life whom you love.  I don’t know how Joss Whedon or George R.R. Martin stand it, I really don’t.

Now let me say that my hero’s father isn’t much like my own father.  My fictional world is probably better off with one less corrupt business executive.  That’s not the point.  My main concern is my hero and his emotional turmoil.  How can I sit here at the keyboard and take the empathy that even now has tears running down my face and translate that into the words that will express my hero’s suffering and the decisions he makes based on it?  I don’t know, honest to God I don’t, but I have to find a way.  I have to draw on my pain and reshape it into the pain as it is experienced by my hero, in a way that will resonate with my readers.

Dorothy Parker wrote, “Never never dip your quill/In ink that rushes from your heart.”   To get to the level of writing I want to achieve, that’s exactly what I have to do.  I have to take that quill and stab myself in the heart, over and over again, keep that ink rushing out, and write my stories from the very essence of my heart.  I’m going to cry a lot, and I’m going to get headaches, and I’m going to get sick to my stomach.  Nobody ever said it was easy being a writer, and anybody who thinks so is a fool.

I will complete this story.  I will do right by my hero and my father.  And then I will move on to the next story, sharpen the next quill, and spill my metaphorical blood across the page.  Because I am a writer, a storyteller, and this is what I do.

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The Stress Meter Blew Up


by Lillian Csernica on October 14, 2013

Yes, that’s right, the Stress Meter blew up yesterday and I’m still picking pieces of shrapnel out of my psyche.

Here’s my Deal With It list:

John is having trouble adjusting to the amount of homework high school is piling on him.  This has been resulting in discipline problems, noncompliant behavior, shouting matches, and punishments (loss of privileges).

Michael is having more seizures more frequently.  Last weekend he had a tonic clonic seizure, which is the worst one short of staticus epilepticus.  He’s tired all the time, his cognitive functioning is down, and he’s getting combative more often.

John’s aides are having problems keeping organized regarding his homework, projects, etc.  His school aide does not communicate with us very well.

I’m starting to have anxiety attacks again.  So far it’s been one a day, but if matters don’t lighten up around here, I may have to speak to the doctor about my medication.

Last but far from least, I had to fire one of Michael’s three nurses.  Understand that given the nursing shortage, we’re going to have a hell of a time replacing her, so I did not fire this woman on a whim.  Truth be told, my husband never should have hired her in the first place.  I trusted his judgment when I should have gone over the woman’s resume with a microscope.  I’m so happy she’s gone.  That lightens my load right there.  When the two other nurses start coming to me with their concerns about the third one, that’s a serious warning that must be taken seriously.  So she’s gone.  Hallelujah.

Did I mention my workload?  I’ve got the novel edit, I’ve got my first ebook project to edit, I’m waiting on the second half of the book doctor job I’m doing, and I just finished reviewing eighteen short stories in one issue of a major spec fic ‘zine.  Still waiting are a novella and four short stories in a brand new ‘zine.  Then there’s the little matter of all the short stories I’d like to complete, the new ones I’d like to write, and the ones that are out to market coming in and out.

I lost two sales due to the markets closing their doors.  That really sucked.  The editors were sorry, I was sorry, everybody was sorry.

This coming weekend I’m blowing this popsicle stand and heading south for San Diego.  The folks at Conjecture/ConChord have been kind enough to invite me to be a pro guest.  I’m taking along the Halloween party gear with plans to whoop it up.  While I’m gone, everything here is Somebody Else’s Problem.

Doesn’t that sound wonderful?

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Filed under Depression, Family, fantasy, Fiction, Horror, science fiction, Self-image, Special needs, Writing

Unspoken Thoughts


by Lillian Csernica on June 7, 2013

Yes, another blog challenge.  What can I say?  They’re fun.

Ten Things I Want To Say To Ten Different People Right Now:

My best friend when I was in high school:  I wonder what you’re really like, behind that know-it-all self-righteous online persona.

My sister: Let go.  Be a smart lifeguard and don’t get drowned by the one you’re trying to save.

My high school junior year English teacher:  You were right.

All the nurses who pulled twelve hour shifts with Michael when he was in the NICU:  He’s seventeen!  He’ll graduate from high school next year!

Killian:  I hope your wife appreciates you.

Cliff:  I’m pretty sure I’ve fallen in love with you on some level.  We both know where that level will stay.

My godfather: I hope you’re at peace, I really do.

My brother:  Wish we lived closer together.

My fairy godmother: You’re the best.

My first grade teacher:  Thank you for teaching me discipline.

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Helping Hands


by Lillian Csernica on May 8, 2013

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Day 8: A piece of advice you have for others. Anything at all.

Here’s a news flash:  I’ve been dead.  That’s right, stone cold roadkill.  On a night in late August, 1987, I died in a car accident.  I was out in the middle of nowhere at 11:30 p.m.  Two strangers, a LVN and an Air Force Paramedic, happened to be driving by.  They resuscitated me and kept me going until the ambulance could arrive from thirty miles away.  You can call it luck or you can call it Fate, but I’m content to call it the kindness of two strangers who jumped right in when they saw I needed help.

Around Christmastime the newspapers like to run stories about “angels” who have appeared right when people needed help, then vanished just as suddenly.  These “angels” look like ordinary people who happen to know what needs to be known or can do whatever needs to be done.  Whether or not those people really are angels is beside the point.  Being there when people need you and giving whatever help you can provide, that’s what matters.

I live in the mountains.  It gets really dark at night on the highway under the redwoods.  One night my husband, my older son, and I were driving home along the highway when I saw a face come out of the darkness and flash past.  I told my husband and we stopped.  Sure enough, three college-age boys had gone hiking and gotten lost.  They couldn’t find their car before night fell, and now they had no idea where they were.  My husband told them to keep walking south.  He’d take me and our son home (Michael was in a car seat then), then he’d come back for the three boys.  I sent a care package of peanut butter sandwiches, apples, and drinks with my husband.  Later he told me the boys fell on the food with all kinds of thanks.  They’d been hiking for hours and were really hungry.  My husband took them to their car, and they went on their way.

I could tell you more stories of people I’ve helped and people who’ve been there to help me.  I’m sure you have some stories of your own.  You’ll understand when I say this is the best piece of advice I’ve been given, and the best one I could give:

Life is short.

Be kind to everybody.

We never know how far one act of kindness can reach.  It can be enough to get somebody through a really bad day at work.  It can even be enough to change the mind of someone who’s contemplating suicide.  So next time, when you see that young mother with her two or three little kids struggling to get them and her cart  through the check-out line, let her go first.  Maybe help unload her cart while she manages the kids.  Hold the door for the elderly man who’s on his way in.  Smile when you happen to meet the glance of a stranger.  It doesn’t take much, folks.  And it can make our world so much better for all of us.

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Hopes & Dreams: My Writing and My Sons celebrates 1000 Ausome Things #AutismPositivity2013″


by Lillian Csernica on April 30, 2013

My seventeen year old son Michael was a micro-premie, born at 23 weeks.  Due to severe complications, he has cerebral palsy, seizure disorder, a Baclofen pump, Harrington rods in his spine, and he is confined to either his wheelchair or the hospital bed in his room.  John, who is fourteen, has the diagnoses of speech delay and autism.  I mention Michael because I want to show you the context in which my family lives.  Our motto is “Never a dull moment.”  Every day is a new day, with its own challenges and its own rewards.

I’d been living in crisis mode with Michael for two years when John came along.  Three years later, after John’s speech therapist recommended neurological evaluation, we learned that John is on the spectrum.  I’ll be honest with you.  I was heartbroken.  I love Michael dearly, but I was hoping that with John we’d have a healthy, normal child.  John’s diagnoses meant more support through the IEP process.  They also meant even more battles with the insurance company over appointments with specialists.

Today John reads to Michael, sings the lyrics to his favorite songs, recites dialogue from his favorite movies, and talks to me about genies and superheroes and how he wants to go to Tokyo and Las Vegas (places I’ve been on business trips).  John learned to draw by watching “Blue’s Clues” and “VeggieTales.”  Last summer, John appeared onstage in a production of “Peter Pan.”  It was a theatrical summer camp, with four different casts.  John played both a pirate and an Indian.  John’s teachers, therapists, aides, Grandma, Aunt, and of course my husband and I came to see him.  We made sure he had somebody in the audience for every performance.  When it came time for the curtain call on the final performance, I made sure John had a bouquet of flowers just like the stars of the show had received.

John is my joy.  He’s smart, funny, creative, stubborn and every inch a teenager now.  I thank God and all the professionals along the way who have contributed to John’s growth and development.  What had broken my heart has now reassembled the pieces into a better, stronger pattern, giving me hope and courage for both my boys.

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