Tag Archives: premature birth

#atozchallenge K is for Kids


by Lillian Csernica on April 12, 2019
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by Lillian Csernica on April 12, 2019

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People told me that when I had kids, my life would never be the same.

Those people had no idea how right they were.

My son Michael was born at 23 weeks, weighing 770 grams. That’s one pound, eleven ounces. He was the size of a kitten lying across my palms. This was back in 1996. At that time the age of viability was 24 weeks, because only then would the lungs function. During every single day of the following three and a half months Michael spent in the hospital, we watched and waited to see if our baby would live or die.

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Two and a half years later, John arrived. He went full term, a hefty eight pounds, ten ounces. During delivery, John refused to breathe. By then the hospital staff knew our family rather well, so the head of neonatology was on hand to jump start John and make sure he started life in good form. John had to spend the first week of his life in the NICU, which drove me crazy because I wanted my baby. Then, as John missed verbal milestones and showed other unusual behavior, we learned he has Autistic Spectrum Disorder.

FanimeJohn

Now people tell me I should write about my experiences with both of my sons. I should write about battles with insurance, battles with the school district, battles with the boys themselves. I should write about all the doctors and nurses and teachers and aides I’ve worked with through two decades. I should write about what I’ve learned and what I wish I’d known.

It’s not easy to write about difficult events when you’re still in the process of living through them. Now that my boys are legal adults, they face a sharp decline in services, lack of day programs, and the ongoing insurance battles. Michael is still in just as much danger from every medical crisis. John is still learning how to handle some of his symptoms. I am their mother, their legal guardian, and their primary advocate.

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The time is coming when I will write more nonfiction. Right now, I write escapist literature because that’s what I need to write. I don’t travel as much as I’d like to because I simply can’t. In order to hang on to my dented sanity, I run away from home inside my head.

 

 

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Filed under #atozchallenge, autism, Blog challenges, Conventions, cosplay, doctors, Family, fantasy, Fiction, frustration, Goals, historical fiction, hospital, mother, neurodiversity, parenting, special education, specialneeds, travel, Writing

#blogchallenge: Fortune Cookie #20


by Lillian Csernica on May 20, 2018

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Today’s fortune says:

A loved one is of utmost importance at this time.

SPECIAL NEEDS

I sat there on the generic brown couch, staring up at the TV screen mounted high in one corner. Hospitals. Designed to give you a crick in the neck. You were lying in bed looking up at the TV, or you were sitting in some “Family Lounge” praying the news was good or at least bearable.

It was four a.m. on a Tuesday in late April. I sat in the “Family Lounge” trying not to cry. One of the CNAs, Delia, slept on the other couch. Using her lunch break to take a nap. I didn’t want to wake her. She’d rather sleep than eat. That said a lot about how little sleep she generally got.

I knew all about sleep deprivation. Tommy was back in the hospital again. Another infection. The immune system of a premature baby isn’t very strong. Tommy had made it to age ten, but even so, none of his systems were all that strong. He held on. He kept breathing. His heart kept beating. His organs continued to develop. The doctors were amazed. If Tommy’s life had been a song, that would have been the chorus. The doctors were amazed. And so I sat there, recharging my phone, watching the minute hand of the clock move or staring at the blank black mirror of the plasma screen TV.

Tommy had to live, to go on surviving. If he didn’t, that would finish me. Losing Bobby had been hard enough. Eighteen weeks. Early rupture. He was fine. It was me, my body, that couldn’t carry him to term. I lost him. That horrible moment when I really understood the emptiness where he had been. He’d just started kicking. I was happy, really happy, for the first time in years. That lasted two days, maybe three. Then my water broke too soon, and the nightmare began.

I knew a lot about hospitals. I could write a Lonely Planet guidebook comparing the beds, the food in the cafeterias, what there was to do in the surrounding neighborhoods. I always knew where to find a bookstore, or at least a drugstore with a news stand. When Tommy had to spend a whole summer in the Pediatric Intensive Care Unit, I blew through at least a dozen books. When I finished them I’d leave some for any of the RNs who wanted them.

The clock said five a.m. Delia’s phone alarm went off. She sat up, smoothed her hair, tugged at her scrubs, then gave me that smile that was part pity and part professional compassion. She went back to work. The Infectious Disease unit. What fun. I’d want to burn my clothes and throw away my shoes every single night.

Two hours until shift change. The blood draws usually started at six a.m. so the results were ready in time for Rounds. That was a three hour window of muscle-knotting tension spent constantly on the alert for the five or ten minutes of the specialist’s time. Were the test results good? Did they show progress? Were we a day closer to discharge? The doctors were like Santa Claus. They appeared, dropped off their packets of information, then hurried on. So many more houses to visit, so many more patients to see. Instead of eight tiny reindeer, they had residents and physician’s assistants and sometimes a flock of student nurses who stood out like a flock of geese in their white scrubs. I often wondered if they made the students wear white scrubs so any mistake would leave a telltale mark. There are a lot of bodily fluids splashing around in hospitals, especially in the Infectious Disease unit.

Then came the empty hours until lunchtime. Linen changes. Emptying the catheter bag. Making sure Tommy’s pain levels were still under good control. Just awake enough to be bored, too worn out to do anything about it. I spent a lot of time reading to him, trying to find something entertaining on the hospital’s available TV channels, or just sitting there watching him sleep. It’s a terrible thing when you’re happy to see your child lying there unconscious because it’s the preferable alternative.

Stephen, my husband and Tommy’s father, spent his days at work maintaining the insurance coverage, paying the endless medical bills, keeping our life moving forward until that time when Tommy could come home again. He did his part and I did mine as I sat there alone, watching the empty black mirror of the big plasma screen.

END

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Filed under Blog challenges, doctors, Family, frustration, hospital, mother, parenting, PICU, Special needs, specialists, worry, Writing

The Mother of Invention


by Lillian Csernica on March 12. 2013

It’s high time I dragged myself into the 21st Century by joining the blogosphere.  I’m a writer.  Fantasy, dark fantasy, historical romance, horror, nonfiction.  I have one novel out, SHIP OF DREAMS, under my romance pen name of Elaine LeClaire.  You can find my short fiction at Tales of Old, Tales to Terrify, and soon in Midnight Movie Creature Feature Vol. 2.  I’m very fortunate to have a career that lets me work at home because my two sons are both what’s now referred to as “special needs” children.

They’re not so much children anymore.  Michael is sixteen.  He had to be delivered at only twenty-three weeks, making him a micro-preemie.  A pulmonary hemorrhage and a grade four plus brain bleed left him with cerebral palsy and later seizure disorder.  He is medically fragile, an invalid who is either in his wheelchair or his hospital bed.  He doesn’t let any of that stop him.  He’s an award-winning artist, a great bowler, and he loves classic rock.  Michael has a great smile and a wicked sense of humor.

John is fourteen.  He went full term, but he did refuse to breathe.  His brief bout of hypoxia is what we believe caused his speech delay.  Speech therapy led to an evaluation by a neurologist which resulted in a diagnosis of autism.  John is low on the spectrum, with a talent for drawing that began when he started watching “Blue’s Clues” at age two.  He has taught “Drawing with John” classes at his elementary school both in the classroom and over the school’s closed-circuit television broadcasts.  John loves digital animation and studies the Special Features options on DVDs which give him a behind-the-scenes view of how the artists and programmers work their magic.

It’s not easy finding time to write when each day I have phone calls to make, medical supplies to order, school projects to supervise, doctor appointments, prescription refills to keep track of, and the other random demands that crop up all the time.  I tend to stay close to home for the boys’ sakes, so writing lets me run away from home inside my own head.  I look forward to sharing the ups and downs of this life with you.

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Filed under fantasy, Fiction, Special needs, Writing