Just because, I said | A mother's journal for her preemie-only | By Kristine Jepsen
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Just because, I said

A journal for my preemie-only

Achieving 'Normal'

10/6/2015

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Picture
This week, it was a struggle to remember that a nickel equates to five pennies. Last week it was adhering to the idea that when your teacher pronounces a word to be spelled on a spelling test, you should attempt that word, not just any word that strikes your fancy.

While I bristle at the 'acceleration' of academic expectations in schools today -- a post all its own -- I nonetheless carry a visceral guilt that my child lives with cognitive impairment caused by her having been born early, at 27 weeks and 4 days.

I can hardly write the words without qualifying them -- that every child is unique for a thousand reasons -- but the question remains, and now that my child is in first grade and asking it of herself in the relentless compare-and-compete methodology of public schooling, I have to sit with my fear more formally. 

Would my child have an easier time of it if her brain had had 40 weeks to develop 'normally'?

Science says, "Yes."

When babies are born early, their cerebral cortex hasn't ripened -- that's the mantel of gray matter covering the halves of the brain that's responsible for higher functions such as language comprehension and reasoning. Literally, the neurons there that branch out into an electrical constellation as brilliant as the Milky Way haven't had time to mature. They're there, but squished together like a star cluster. And while studies conflict on the finer points, the general takeaway is that preemies are much more likely than full-term kids to have trouble with language development, visual-spatial reasoning, visual-motor abilities, and executive functioning -- the assimilation of information amassed through hearing, sight, taste, touch, or smell, retrieved from memory and extrapolated into the future.

So what does this mean? I suspect it means I'm not crazy or being hypersensitive when I register that my child struggles to recall 'sight words' we JUST went over, as in, five seconds ago. Or that she will mispronounce a word she's used fluently for months, even years. It means that when she doesn't get the concept of counting backwards, she really doesn't get it. 

Having no choice, I've settled into an acceptance that helping my child learn is a matter of figuring out how she learns, almost irrelative to others or the 'norm.' I'm not sure I care whether she ever memorizes multiplication tables (not my strong suit either, could you have guessed?), but I do need her to understand why we humans persevere in attempting new things: that there's as much possibility of joy and excitement as there is value in learning from mistakes. Long after she ages out of the damn(ing) standardized testing and longitudinal IQ studies, it's self-awareness that she'll take with her into meaningful work and play. 

Instinctively, I think my daughter understands this, and sometimes, she surprises herself. When she was learning to write her name -- a skill that falls off dramatically to this day if she goes any length of time without practice -- Eliza more than once picked up a pencil with her non-dominant hand and wrote her name backwards, right to left, with each letter a mirror image of its correct orientation. I was so shocked, I immediately took a picture of it and e-mailed it to her teachers, her pediatrician, and her grandparents.

I only hope she can remember what it felt like to push the pencil through those motions, backwards or forwards, powered by some small compulsion deep within her, before she looked up to see how the effort would be judged by anyone other than herself. 

That's what I'm learning to stay out of the way of.

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The origin story

3/30/2015

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Picture24 Days / 3 lbs
My daughter Eliza was born May 22, 2008, at 27 weeks/4 days gestation, weighing 1 lb 13oz.

She would not have been conceived at all if, ten months earlier, in July 2007, her brother William had not been pronounced dead at the same gestational age and born still.

This is the origin of her identity as a "preemie" -- an infant born prematurely -- and as an only child. 

Not everyone knows she had a sibling or that the maddening mysteries of their disastrous births are what made me decide, with endless guilt, not to carry another child. 

As a premature baby, Eliza beat many odds. She breathed entirely on her own for two weeks before needing small amounts of supplemental oxygen. She was never intubated -- a dependence many babies struggle to wean from, even years after their birth. She gained weight steadily. The developmental holes in the valves of her heart grew closed on schedule, even though she was outside the womb.

Of the major medical crises that often affect preemies -- including respiratory debilitation, hearing impairment and abnormal heart function -- she came away with just one lasting defect: myopia caused by retinopathy of prematurity and/or the laser surgery she underwent at about 12 weeks to correct it.

She received world-class care in one of the country's most successful NICUs, at the Mayo Clinic-affiliated Franciscan Skemp Healthcare in La Crosse, Wisconsin, and leapt onto the growth chart for her actual age -- not adjusted to her gestational due date -- within a year.

Today, she is the tallest kid in her kindergarten class by whole inches. She is often mistaken for being much older, an impression she relishes every time. By any measure, she's a miracle.  

And yet, I am not content to write out the details of her birth saga and be done with it. 

I read a lot about the effects of early-childhood trauma and about the experience of growing up an 'only.' I'm compelled to do more -- to explore more -- of these complexities and create a record that my child may refer to later in life, when -- I understand -- memories have heightened value for an only child but are impossible to verify without the corroboration of siblings.

I concede now that I will not parent perfectly, and I acknowledge that my choices impacting her life could have been otherwise. But I'm a writer, and this is work I can do. 

I must.

Picture
Eliza's drawing of me with both her and her brother, Will, "in my tummy." | Kindergarten 2014
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    by 
    Kristine Jepsen

    This journal is intended to make my young daughter's memories real, when I'm no longer around to say what happened and what didn't. 

    She came into this world prematurely (very: at 27 weeks, weighing 1lb 13oz), and she's our one and only. 

    Here's who I am, in raising her. I hope it's valuable someday.   

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Photos used under Creative Commons from Joshua Siniscal Photography, lensletter