Tag Archives: aide

#atozchallenge K is for Kids


by Lillian Csernica on April 12, 2019
atoz2019k

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.

Michael in knight costume2

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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