Category Archives: birthday

NaNoWriMo 2017: Fantasy for Fun & Profit


by Lillian Csernica on October 20, 2017

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That’s right. I’ve gone and done it. I have officially signed up for NaNoWriMo 2017.

I’m in the editing stage of The Flower Maiden Saga, so this year I’m going back to basics and writing a good old-fashioned sword & sorcery novel. When I first started to read fantasy, I gravitated to C.L. Moore’s Jirel of Joiry, Fritz Lieber’s Fafhrd and the Grey Mouser, and of course Conan the Barbarian. Red Nails remains one of the most chilling and thrilling stories of its kind.

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Now the tricky part will be getting my daily 1667 words written while I’m doing all of this November stuff as well:

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A road trip up to EuCon in Eugene, Oregon. John will be teaching drawing classes in the Art Bus, which is sponsored by Imagination International Incorporated, the folks who make Copic markers.

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Making Thanksgiving happen.

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Celebrating John’s birthday.

And the usual daily chaos that keeps me on my toes.

All this and write 50,000 words? 200 pages? No problem!

Stay tuned, folks. Let’s see if I can make it to the end of November before my head explodes!

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Filed under art show, artists, autism, birthday, classics, Conventions, cosplay, creativity, Family, family tradition, fantasy, Fiction, Food, historical fiction, Humor, legend, Lillian Csernica, neurodiversity, parenting, research, special education, Special needs, sword and sorcery, travel, Writing

The Greatest Job I’ve Ever Had


by Lillian Csernica on September 17, 2016

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Yes, that’s me. Granted, I was all of eighteen.

Once upon a time, I worked as a Turkish-Moroccan belly dancer. My teacher was a delightful lady from Zaragoza, Spain. I had a genuine, 100% authentic coin belt made by a  man from Turkey. The belt had 144 diamond-shaped metal coins stamped with the image of Venus on the Half-Shell.

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I performed in my high school talent show. The audience actually threw money at the stage. That in itself was funny. Then the stagehands gathered it all up and brought it to me backstage!

My teacher often took me with her when she’d been hired for a party. During the holiday season, we appeared as part of a steady stream of entertainers at a bachelor party. Just one piece of art on the walls in that house could have put me through college. That was the night I got the biggest tip I’d ever received. Some generous soul stuffed a $10 bill down the back of my coin belt!

Ah, the places I’ve been and the things that I’ve seen….

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Filed under artists, birthday, charity, cosplay, fantasy, Lillian Csernica, memoirs, Small business, travel

A Lesson in Priorities


by Lillian Csernica on June 6, 2016

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Ever had one of those days when no matter how hard you try, life just keeps getting between you and what you’re trying to accomplish?

Today fought me from the minute I dragged myself out of bed.  Phone calls, interruptions, distractions, failures to communicate.  This resulted in me being late picking up John at school, something I try my very best to avoid.

When I was a little kid, my mother had occasion to leave me with babysitters or at day care centers.  Either Mom wasn’t good at time management, or life got in her way too, because she was often quite late picking me up.  When you’re six, this causes the kind of anxiety that scorches your little tiny soul for life.  I don’t EVER want John to feel that.

Once I picked up John, he alerted me to the sudden need for two dozen cupcakes.  P.E. class will be having a BBQ to celebrate the end of school.  The cupcakes are John’s contribution to the feast.  OK.  Since I had to drive to the store with the best bakery, I did a few other errands in that part of town.  One resulted in upsetting news.  The other took three times longer than I’d anticipated.

Tomorrow is the Spousal Unit’s birthday.  I also have a group luncheon to attend.  I have to duck out of that early because we’re interviewing new R.N.s for Michael.  Summer school is bearing down on us and we really need more help.

So I’m a little stressed out, right?

I get home with John to discover my sister has rescued a baby robin from the clutches of our male cat, Hunter.  (That’s his name, job description, species niche, and favorite occupation.  Not bad for a single word. )  We suspect the baby fell out of its nest, because it’s too young to fly.  My sister set it on a branch in the camellia bushes out of the cats’ reach and we shut all three feline predators inside the house.

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I fed the baby robin some water with a small syringe.  We watched and waited, hoping its mother would appear.  Even if she did, how would she return her baby to the nest?  This was not a happy situation, especially with John looking on hoping everything would be OK.

Night was closing in.  I took the baby robin to the local native animal rescue.  Finding the place involved a wild ride that is exactly what kept me from getting my own car for so many years.  God and the police must have both been feeling kindly toward me.  I finally found the rescue center, which was part of a private residence.

Now came the hard part.  I had to leave the baby robin there and walk away.  I sat in my car and cried for a while.  I can call in a day or two and see how things are going.  I dread doing so, for all the obvious reasons.

What’s important here is no matter how horrible today was, once that baby bird turned up, everything fell into a very simple perspective.

Save the baby bird.

A while back I wrote a blog post about lighting a candle rather than cursing the darkness.  All the stress I’m mired in right now fell away before that one clear priority.

Save the baby bird.

I’ll let you know what happens.

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Filed under birthday, cats, Family, frustration, Goals, Lillian Csernica, mother, nature, neurodiversity, parenting, veterinarian, worry, Writing

50 Years on Planet Earth


by  Lillian Csernica on December 31, 2015

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At 7:49 p.m. on December 29, 1965, I landed on this planet.

That means that as I go forth into this New Year, I do so having reaching the half-century mark.  I believe it’s traditional when one reaches such a milestone to ponder the wisdom one has accumulated.  The older I get, the more I agree with the lyrics from that Bob Seger song “Against the Wind”:

“I wish I didn’t know now what I didn’t know then.”

(Yes, people probably know that line from the Toby Keith song, but Seger wrote it first.)

Given that I’m old-fashioned and fond of tradition, I hereby present the lessons that life has taught me over and over again.

 

1204571-cartoon-of-a-gravity-causing-an-apple-to-fall-from-a-tree-and-bounce-off-of-sir-isaac-newtons-head-royalty-free-vector-clipartGravity is not our friend.

437877-royalty-free-rf-clip-art-illustration-of-time-flying-byIt’s always later than  you think.

437604-royalty-free-rf-clip-art-illustration-of-a-cartoon-woman-missing-the-target-while-throwing-dartsIf you want to be good at something, you have to practice.  If you want to stay good at something, you have to keep on practicing.  In other words, if you try to rest on your laurels, they will wither and die.

i-dont-have-time-to-hate-people-who-hate-me-because-im-too-busy-loving-people-who-love-me-200x110Hatred is a waste of time and energy.

karma-quotesLiving well really is the best revenge.  For one thing, you’ll probably have a pretty tight alibi.  For another, it’s so much better to leave it up to God/karma/the Tao/et al.  They have infinite resources and a much better knowledge of exactly where to hit the offender.

canstock14569636When it comes to True Love, your mileage may vary.  There is no single trophy, no glittering crystal heart on a 24k pillar.  What is True Love in my eyes might be a total joke in yours.  I write romance novels for a living, so I know about how many ways True Love can show up in your life.  Stop aiming for some Hollywood daydream.  Stop torturing yourself when you think you’ve failed to achieve it.  Just breathe, and pay attention.  True Love might be sitting right next to you.

k17938633When given a choice between mercy and justice, I will choose mercy every time.  Why?  Because I know I don’t know all the details, and I probably never will.  Also, if the day comes when it’s me standing there waiting for the decision to be made by other people, I’ll be begging God to have mercy on me.

k18827602It’s OK for a grown-up to own stuffed toys.

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Filed under birthday, charity, dreams, Family, family tradition, Goals, Humor, love, memoirs, perspective, romance, therapy, Uncategorized, worry, Writing

Counting Down to Christmas


by Lillian Csernica on December 20th, 2015

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If I didn’t keep a running To Do list, I don’t know how I’d get anything done.  When I’m stressed out I tend to lose my long range focus and the ability to structure my time effectively.  I’ve done a lot of my shopping online this year.  The rain coming down in buckets outside my window makes me very happy for that option.

This year has been such an ordeal for our family.  I decided back in November to pay attention to all those articles on managing holiday stress and choose the activities most important and meaningful for both me and the boys.

Here’s what got checked off the To Do list this weekend:

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On Saturday night I took John to “The Nutcracker.”  He’s been asking to go tothe ballet for a month or two now.  We know he enjoys seeing and hearing a live orchestra perform.  I think the main attraction of the ballet was A) the costumes for this particular show and B) the emphasis on all those pretty girls with their long legs.

The Santa Cruz Ballet Theater put on a marvelous performance.  Hearing Tchaikovsky played live was a treat in itself.  The production values and the special effects left both me and John wide-eyed with wonder.  As for the dancing….  Wow.  The Snow Queen and her Cavalier made it seem like gravity had no power over them at all.  This was the first of John’s Christmas presents.  He kept saying it was “Amazing!”

John and I had dinner on Pacific Avenue after the show, talking about our favorite parts of the show.  Despite the 40+ degree weather, we stopped in at Cold Stone Creamery for some dark chocolate peppermint ice cream.   Oh my stars and garters.  That was heaven on a spoon!

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Today Chris and John got our Christmas tree.  It’s become a tradition for the two of them to go to a tree farm and cut down a fresh tree.  I had to admire their determination.  Soon after they left, the skies darkened and it started raining.  They did return victorious, if a little damp.

John has graduated to stringing the lights on the tree himself.  He loves the colored lights that blink on and off and change colors in varying patterns.  Out came all the boxes from the garage with our wide variety of Christmas ornaments, table linens, and John’s personal treasure, his Peanuts cuckoo clock.  On the hour, Snoopy comes out where the cuckoo would be and the Peanuts theme song plays.  We put this up only during the holiday season.

Once the lights and gold tinsel garlands were in place, Michael sat in his wheelchair to help choose ornaments and where they should go.  As each of us pulled the tissue off an ornament, we’d hold it up for Michael to see and ask him if that one should hang on the tree.  Once he gave us his yes or no, then he’d pick the right spot on the tree.  After spending two months watching Michael lying there in his ICU bed, I cannot tell you the joy I felt seeing him sitting there happy and smiling, reaching out to touch an ornament or grab John’s shirt and make him laugh.  Michael’s R.N., a wonderful lady named Joan, had a good time helping with the ornaments.  They were all new to her, so I shared some of the stories attached to them.

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Here it is, courtesy of Michael and John!

As for me, I put on a Christmas jazz CD and drank eggnog.  All of a sudden, there it was.  Our family gathered around the Christmas tree, breathing in the fresh pine scent, joking about hanging the good ornaments up where our three cats can’t get at them.  My mother is visiting my brother right now, but she’ll be back for Christmas Eve.  My sister is down in Southern California, but she’ll be back for New Year’s.  It’s good to have time with just us and the boys.

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In my family we party a lot during the holidays.  My birthday is December 29.  My sister’s is on January 1st, and my mother’s on January 3rd.  I keep careful track of who gave who this or that Christmas present, along with who gave who that birthday gift.  Lists!  More lists!  One of the traditions I consider most important is writing thank-you notes.  Michael likes to create his own stationery, and John will add little drawings to his cards.

We have so much to be grateful for, and so many people to whom we owe our thanks.

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NaNoWriMo Week Three: Time to Hit Turbo!


by Lillian Csernica on November 21, 2014

As of this moment, my official word count is 37,100.  That leaves 12,900 words to be written in the next 9 days.  1433 with a repeating decimal per day and I’ll bring it in by the 30th.  I’ve been writing between 1700 and 2000 per day, so the NaNoWriMo site tells me I’m looking at hitting the finish line on the 27th.  Thanksgiving Day.  Holy cats.

I have to say, I am doing what I really hadn’t thought I could do.  10,000 words per week?  That’s 40 pages, according to standard ms format.  Writing every single day, come hell or high water?  Now that the rainy season has finally arrived, high water is not an impossibility, given that one border of my property is marked by a creek.  As for the hell….  Some days are better than others, some days are worse, but the writing still has to get done, yes?

I must confess that this week I’ve had to push myself harder to get the work done.  November is one of my busier months.  Michael’s name day is Nov. 7th, the Feast of the Synaxis of the Archangels.  There are four important birthdays this month, including my father’s on the 18th and John’s on the 23rd.  And then we have Thanksgiving.  This alone involves a complex list of questions and decisions that have to be made and remade every year:

  • Where are we eating?
  • Who is eating with us?
  • What are we eating?  Who can eat what?  What can’t we have due to food allergies, lactose or gluten intolerance, and any possible philosophical or religious conflicts?
  • Do we have enough room?  Where will we put the kids?
  • And then there’s the usual chaos surrounding making sure we have all the cooking utensils, pots, pans, baking necessities and enough matching pieces of everything to set a nice table.

This year, for some reason I’ve decided to get crazy and make some napkin rings.  Curse you, Pinterest!  You have so many pretty pictures, and you make it all sound so easy!  I raided a fabric store today for craft glue, ribbons, and a bizarre variety of buttons.  You know you’ve gone off the deep end when the ladies who work at the store can’t resist asking what you plan to make.  That particular pile of supplies will go toward both napkin rings and Christmas ornaments.  That explanation lowered the Weird Level of my purchases to something that made sense.

And yet I cannot allow myself to be distracted!  No messing around with craft projects until my daily word quota has been written!  One of the big reasons I enjoy making jewelry is because it works parts of my brain that I don’t necessarily use while I’m writing.  I use a different department in the Idea Factory, so to speak.  It also keeps my hands busy while the novel’s characters are having private meetings in the back of my mind.  They’re busy making decisions and mounting conspiracies, so when I go back to the keyboard to have another go at writing, I’ll discover mutiny on the page.  They wanna do what they wanna do.  The great part about NaNoWriMo is I just let my fictional people run wild.  This is like the Dress Rehearsal.  Get it out of your systems now, boys and girls!  That way when we buckle down for Opening Night, we’re ready to put on the professional performance.

Still, it is hard to maintain momentum over this long a haul when I’ve never done it before.  Gotta get there.  Gotta make it to the finish line, if only to give my agent a heart attack when I tell her I’ve already written half of the sequel to Sword Master, Flower Maiden.  It’s important to know how to motivate yourself, right?

Idea Factory

The Idea Factory

 

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Filed under Awards, birthday, Eastern Orthodox Christianity, Family, Fiction, Food, Goals, history, Japan, romance, Special needs, Writing

Light That Candle


by Lillian Csernica on August 16, 2014

It has been a long and difficult week all over the world.  So many losses.  So much upheaval.  I’ve seen a lot of information out there about depression and how to cope with it.  I’ve seen a lot of really stupid remarks by people who have no idea what it’s like to live with the big Black Dog day in and day out, to go to sleep (if you can) with the Black Dog sitting on your chest and then wake up to it gnawing on your heart.

One suggestion I’ve heard several times is to go do something for other people.  Get out of your own head, away from your own life, and help somebody who needs it.  You could make all the difference.  With that in mind, I’d like to share seven events from my life, seven moments where the kindness of strangers made a huge difference to the suffering I was enduring at that time.

1) When I was ten years old, I had to have surgery to remove the birthmark on the right side of my rib cage.  I don’t remember where the hospital was, but I do remember it was a long way from home.  In those days parents weren’t allowed to stay in the same hospital room with their children.  That meant my mother had to get a hotel room down the road.  Fortunately, I could see the hotel’s sign from the window of the my hospital ward.  Even so, I was alone, I was scared, and a bunch of strangers were about to wheel me into an operating room so the doctor could cut off a chunk of my skin.  There was another girl in the ward.  She was pretty, with long blonde braids.  I don’t know what happened to her, but her jaw was broken and it had to be wired shut.  She couldn’t talk, right?  The night before my surgery I stood there at the window crying.  I wanted my mother and I wanted to go home.  The blonde girl stood next to me, put her arm around me, and leaned her head on my shoulder.  She let me know I was not alone.

2) One Halloween when I was in high school a good friend of mine told me that if we dressed up in costume, we could get in to see “The Rocky Horror Picture Show” for free down at a theater near the beach.  So we got dressed up and off we went.  For some reason my friend got his wires crossed.  There was no such offer.  By then it was too late to do much else.  As we stood there, disappointed and trying to salvage the evening, a woman who was standing in the theater lobby walked over and put money on the ticket counter.  All she said was, “You’re in!”  We thanked her up one side and down the other.  I had never seen the movie, so that was quite a memorable Halloween.  This was not a terribly serious situation, but even so, a total stranger stepped up and did something generous and kind.

3) When I was in the hospital on bedrest before Michael had to be delivered early, there were three perinatologists on rotation in that hospital.  The one I liked even before he spotted the problem and had me admitted to the hospital immediately.  The second one I don’t remember all that well.  The third doctor was one of those tall, aloof, distinguished men who may be brilliant at medicine but lack something when it comes to their bedside manner.  Once it became clear that I would have to stay in the hospital until a) Michael reached a safe length of time in utero, or b) the crisis came and he had to be delivered, I had to resign myself to the long haul.  Chris had brought some icons, including the one of my patron saint, St. Irene of Chrysovolantou.  The third doctor came into my hospital room one afternoon.  Now that in itself was odd, because “morning rounds” happen in the morning, right?  The doctor had brought me this big beautiful coffee table book.  It was full of gorgeous photographs of the work of Faberge, who is famous for the jeweled Easter eggs made for the Russian royal family.  It’s funny how you believe your impressions of people.  I never would have expected such a gesture from this doctor.  And yet, he offered me the book, making a sympathetic comment about all the time on my hands and how he’d noticed my icons and thought I might enjoy the book.  One of my nurses let me know it was the doctor’s own personal book, too, not something from the hospital library.

4) My son Michael’s birthday falls in late April.  Depending on how things work out on the Old Calendar, Russian Easter will happen right around then too.  We’ve often celebrated Michael’s birthday as part of the big annual open house held by his godmother (when she was still with us) and her husband.  His godmother would make a cake for Michael and we’d sing “Happy Birthday” to him.  A lot of people came to this open house, as they continue to do every year.  On the day I’m thinking of, a man was out in the backyard with the rest of us watching us give Michael his cake.  Later the man came up to me and handed me a twenty dollar bill.  He wanted me to get something for Michael.  I thanked him and assured him I would.  People want to help Michael.  They want to do whatever they can to make his life better or easier.  I didn’t know this man, and I will probably never meet him again.  I will always remember him for his burst of compassion for my son.

5) One evening a friend of mine who lived up in the East Bay came down for one of his rare visits.  He’d borrowed his father’s Porsche.  We went out to dinner and I brought Michael with us.  (John wasn’t around yet.)  We didn’t go very far from home, and we had a good time at the restaurant.  My friend held Michael while I ate my dinner.  Being a young man, he didn’t have all that much experience with babies, so this was an adventure for him.  Unfortunately, when we were ready to go home, the car wouldn’t start.  From there it was one thing after another until I could get ahold of Chris and have him pick us up.  The point of this story is that we were parked next to a KMart that had an enclosed area before you entered the actual store.  It was getting later and colder, so I sat in there with Michael while my friend tried to get the car working.  The staff of KMart were getting ready to close, but they were very kind.  This was back before I had a cell phone, so they let me call Chris, then offered me whatever blankets or baby supplies I needed for Michael.  At this point I was starting to get really upset, worrying over Michael, so their concern and assistance meant just that much more to me.

 

6) Now this story happened not too long ago.  I was meeting my Japanese teacher in a local coffee shop.  I’d been rushing around all day getting things done so I could meet her in time.  I had made a mental note about my pocket money, but somehow I got hung up on an earlier version of events and forgot giving some cash to John.  When I went to the cashier to pay for my drink, I suddenly discovered I had no money.  I was so embarrassed.  I didn’t know what to do.  I didn’t want to impose on my teacher.  The young lady behind the counter took pity on my confusion and told me not to worry about it.  There was enough in the tip jar to cover it.  How kind of her!  She didn’t have to do that.  My lesson started on time with no undue awkwardness.  I’ve been back to that coffee shop more than once, and I’m a heavy tipper!

7) In Santa Cruz there is a wonderful street named Pacific Avenue.  If you want to be formal about it, it’s the Pacific Garden Mall.  Time and time again I’ve gone there with my mother, my sister, my husband, my son John.  I’ve gone Christmas shopping there with my best friends.  I once ran through a torrential rainstorm there and bought a painting for two dollars from a UCSC student who spoke French.  I’ve given money to street musicians and talked to the man who makes animal balloons outside the candy store and I spent a lot of time in the Borders when it was still there.  Aside from an international airport, Pacific Avenue is the best place I’ve found for people-watching, especially on a bright Sunday afternoon.  You never know what you’re going to see, and I mean that.  No matter how bad things feel, no matter how dark it’s gotten inside me, if I hang out on Pacific Avenue for a while, something will happen to make me feel better.  And so I salute all of the people, the shopkeepers and sales clerks and food service folks and the entertainers and the tourists from all corners of the globe.

If you ever get the chance to light that candle instead of cursing the darkness, take it.  Speaking as someone who has been in desperate need of a little light, I can assure you that a single candle flame can make all the difference in the world.  From that little blonde girl in the hospital with me to that doctor whose human side I got to see, there have been people out there kind enough to light my way and keep me going despite all the depression, the grief, the trauma, and the pain I’ve endured.

God bless you.  Every single one of you.  You don’t know it, but you may have saved my life.

 

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Filed under birthday, charity, Depression, dogs, Eastern Orthodox Christianity, Family, Food, Halloween, love, Self-image, Special needs, Writing

Story Cubes: An Unlimited Resource


by  Lillian Csernica on July 14, 2014

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It’s not easy buying gifts for my son Michael.  He’s 18 now, and while his body is medically fragile to due cerebral palsy and seizure disorder, his cognitive skills are just fine.  Michael can use only his right hand and arm, so that tends to limit our options.  Some of his favorite toys are the ones where you push a button and something lights up and/or music starts to play.  The trouble is we can’t just keep shopping for him in the Preschool aisle.

One Christmas I found Story Cubes.  They are a dream come true on so many levels.  Nine six-sided white dice.  Every side of each die has a pictogram such as a clock or a globe or a parachute in solid black lines.  There are ten million different combinations of pictograms, and that’s just with the basic set.  Now you can get additional dice such as the Clues, Enchanted, or Prehistoria sets.

Michael has told us he wants to be a storyteller when he grows up.  He wants to write books like I do.  He already has the beginning of a YA science fiction series in the works.  This is Michael’s favorite way to play Story Cubes:

I put one die in his right hand.

He pulls his hand back to his shoulder and opens his fingers, dropping the die.

I tell him which pictogram is face-up.

We talk about possible meanings for that pictogram and Michael gives his “Yes” sign for the one he likes the best.

When Michael plays Story Cubes with one of his nurses, she will ask Michael a question and then he’ll roll the die for the answer.  That’s how they build their stories.

I keep track of the story in Michael’s personal journal, adding the particular pictogram next to its section of the story.

I took the Story Cubes and Michael’s journal with me to one of his triennal IEP meetings.  Everyone on the team, from Michael’s teacher to his occupational therapist to his speech therapist, got very excited about Story Cubes and their potential for helping special needs students.  I bought another set and gave it to the Speech Therapist so she could take it with her to the other schools where she worked.  The more teachers and therapists and parents and students who know about Story Cubes, the better!

We’ve written a number of stories together.  My personal favorite is the one about the professional gambler whose plane had to make an emergency landing because of lightning.  An unknown benefactor saw to it the gambler made it to the tournament where he was scheduled to play.  That man turned out to be a sheep rancher from Australia who was very rich, but on the shady side.  With a little work, I think it might make for a very entertaining suspense story.

As a writer, I’m always on the lookout for something to stimulate my imagination on those days when my brain feels like a dried up cornstalk.  Story Cubes are wonderful for turning the work of writing back into play.  I highly recommend them for solo play, or maybe even one meeting of your writer’s group.

 

 

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Filed under autism, Awards, birthday, Christmas, Family, fantasy, Fiction, Goals, science fiction, Special needs, Writing

One Good Heart Can Change the World


by Lillian Csernica on May 15th, 2014

 

Today I would like to salute the men and women who serve in the police force and as fire fighters.  People go into these lines of work for various reasons.  One key reason is their desire to help people.  The two stories below demonstrate the warm, caring hearts that beat behind the badges these two officers wear.

 

 

 

One Police Officer Has Changed A Special Needs Family’s Life

 

 

One Police Officer Has Become an Ambassador for Kindness

 

Here’s the story of a man who was already busy fighting a fire when suddenly he was called upon to deliver a baby.  Now that’s what I call multi-tasking!

 

 

British Firefighters Use Midwife Skills

 

It helps to be in the right place at the right time.  It helps to have special emergency training.  What really helps is having a compassionate heart and the willingness to take action, not just when circumstances demand desperate measures but in the little moments that can make a huge difference.

To all of you “ordinary people” out there all over the world who will never be recognized publicly for what you do, thank you so much.  Thank you for lighting that candle rather than just cursing the darkness.

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Filed under autism, birthday, charity, Depression, Family, Food, love, Self-image, Special needs, Writing

A Day of Celebration


by Lillian Csernica on April 29, 2014

 

Michael in Stander

Today my son Michael turns 18.  My little boy, born at just 23 weeks, has fought the good fight every day for 18 years.

For those of you who may not know, 24 weeks is the threshold of viability.  That’s when the lungs are mature enough to function outside the womb.  The doctors did not expect Michael to live.  They gave us the option of turning off life support.  Chris and I decided we could not do that.  It was one thing if Michael died due to his fragility.  It was another to deprive him of any chance to live.

Michael spent his third trimester in the Neonatal Intensive Care Unit and later the Pediatric Ward, hooked up to so many monitors and breathing machinery and undergoing constant testing to make sure everything was developing properly.  I remember the first night I was allowed to feed him 8cc of my milk through a gastrostomy tube.  On Memorial Day Weekend of that year, Monday evening, I held Michael for the first time up against my chest, his delicate skin against mine.

Our parish priest came to pray over Michael what may well have been every day.  On the 8th day Fr. Basil baptized him and gave him his name.  We still didn’t know what might happen, so we couldn’t wait for a formal baptism and chrismation at church.  Fr. Jonah, a monk and Michael’s future godfather, joined Fr. Basil as often as he could.  The doctors granted us permission to put paper icons of Christ, the Mother of God, St. Michael the Archangel, and St. John Maximovich in the isolette where Michael lay wired up to all the machines.  His official diagnosis was spastic quadriplegia, which is a form of cerebral palsy.  (Later, when Michael was 2 years old, he developed seizure disorder.)  I’ve never prayed as hard as I prayed in those months of surgeries and tests and discouraging prognosis.

Michael was released on August 14th.  The next day was the Feast of the Dormition of the Mother of God.  Fr. Basil draped his stole over Michael while I carried him into the nave, then set him on the festal icon.  When the day came for his chrismation, I think the whole parish was there with us.  At one point in the service Fr. Basil took Michael into the altar and carried him around it three times.  Waiting to receive him, I stood there with tears running down my face.  The people in the choir could see me.  Their voices faltered because they started crying too.

Michael’s survival is considered a miracle attributed to St. John Maximovich, Archibishop of Shanghai and San Francisco.  We anointed Michael with holy oil from the eternal lamp that burns at St. John’s shrine in the Holy Virgin Cathedral on Geary St. in San Francisco.  That lamp is burning now.  Go to the cathedral and you can receive a small bottle of the oil.

There have been many surgeries, many procedures, many medications, many setbacks, and many tears.  There have also been triumphs and progress and quiet moments of joy as the person whom my son is has found ways of shining through the physical difficulties that keep him from walking, talking, and eating on his own.  Michael is a smart boy, good at art, with a wicked sense of humor.  He loves Wii Sports, especially baseball.  Even more so, he loves to go bowling in a real alley.  In June, he will graduate from high school.

My baby is now a legal adult, with the whole world wide open before him.

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