Blogging from A-Z: M is for Mauve (Kifo Island Chronicles)

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Doctor Harris held the baby gently, at an arm’s length, her feet against his chest, then firmly manipulated her tiny body. Even though Lara knew that it was impossible, she still rooted for baby Mauve to push into the man’s burly chest, or cry –

Or anything.

Anything at all.

But, of course, she didn’t. Couldn’t.

Her mother sat in the upholstered rocker, her gaze fixed on the man who held her infant daughter, her face faraway and expressionless. She hunched over her own middle, thin arms wrapped around herself as though to shield her. She couldn’t be more than twenty, but the marks on her arms said that she was very determined at escaping- or had been, until reality presented itself in the form of a beautiful baby girl.

The doctor went through all the reflex tests – not a glimmer of response from the baby; not a glimmer of hope for the mother. Around them, the NICU was alive; nurses bustling about, parents rocking babies, holding babies, chatting with one another about their progress or setbacks, or, like this mother, sitting in stunned silence, unable to comprehend the mixture of love and hopelessness that they felt for this tiny person who had just entered their lives, and was already in danger of leaving it.

The doctor passed the baby to Lara as he turned to the computer. He had an expert, reassuring manner of handling the infants, even with the most complex life support and monitoring equipment. Lara settled Mauve in the nestlike incubator, fitting a clean and rolled gauze square into each clenched fist. There was little reason – this baby would never open her hands, never use these muscles, except during a seizure. Already, she was on enough anti-seizure medication to have toxic side-effects – and she still seized several times a day.

This post is in memory of Elijah James Burton, July 13-25, 2003.

“I’m sorry.” Doctor Harris used that tone they all affected with bereaved parents. Kind, but distant – a Joe Friday delivery of simple facts that allowed them to keep doing this job that held both tragedy and joy.

“Sorry…” The mother echoed, tonelessly, as though she was tasting the word, but not taking any meaning from it.

“No!” said the other girl, at the same time. She hovered over the young mother’s shoulder, as though she could protect her if she only stayed near enough.

“I am sorry,” Doctor Harris said again, meeting the stunned and accusing syllable with compassion. He frowned a bit as the child’s mother just sat there, hugging herself and rocking slightly.

“Then there’s no hope?” the dark-eyed girl asked.

“It’s as near total ancephaly as I’ve seen. If she had any less of her amygdala or brain stem, she would not have survived to this point, and quite possibly would have died before birth.”

A baby girl without a brain.

Sometimes, Lara saw things here that were unspeakably cruel, and she wondered why she stayed.

The girl – she couldn’t be more than sixteen – came nearer, stared at the screen. The glow bathed her face, as her composure crumpled, and she began to sob. “This just isn’t fair!”

Lara sighed to herself. No. It wasn’t fair. It never was.

As if the exclamation had awoken her from whatever trance she’d escaped to, the mother leapt from the chair, and pressed her hand against the plastic that separated her from Mauve. Then she stared at Lara, and stabbed out at her with a trembling finger. “You have to save my baby!”

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  1. Sometimes….

    Well, sometimes, because there’s little I can say, Shan. Except I love you, and even though the ending was sad, it was happy too… he was loved, you had that time with him, brief as it was… happy is the wrong word, but… well, perhaps then “beautiful”, “sublime”, even somewhat “surreal”… especially to one who’s never gone through the experience.

    I just want to hug you (and Mauve’s mommy and sister) now.

    • It’s surreal to me to. For those 12 days, and for Annalise, and the knowing that she would not be here.

      It’s a paradox. I would not trade Elijah. Not for anything, ever. I will be his mommy, just like I am his brother and sister’s, for every breath of the rest of my life.


      I wish he had not spent his life connected to machines. I wish he could have grown up, and come home. I wish that he had been able to cry, and suckle. I wish I’d had more than that one wonderful experience of our gazes meeting in recognition, wisdom, and, acceptance. I wish I could have spared him the suffering, and seen him grow up, and held him more. I wish I had read to him, or sang more than one song…

      I wish his brain hadn’t been injured. I wish he was here.

      I wish there wasn’t this hole in my soul that never quite goes away, and that no one else will ever fill.

      I wish Miah and Lise could have their brother, and Jim his second son.


      I’m happy for those 12 days. I’m happy I held him, fed him, sang to him. Happy we loved him. Happy his life gave a better, freer life to someone else.

      Happy I went through that with Jim; it’s made us stronger. Happy that Elijah woke me up, made me a far better mother to his siblings than I would have been to him, if he lived…

      Wibbly wobbly, timey wimey paradox…

      Thanks for being there. Thanks for being here. Thanks for being you. ❤

    • Lauralynn,

      It is. Close to my heart, this particular brand of sadness. Not all endings are happy, and sometimes, we hang onto whatever tiny glimmers of hope or goodness we can glean…

      I needed to write this one. Not just for me, but for all the families for whom this is a reality…

    • August,

      It wasn’t easy to write. It never is, when it’s so close to home.

      Those 12 days of rotating between the NICU and our home about an hour away, trying to be with Elijah as much as we could while still providing a semblance of normalcy for a 20-month old – those were the most surreal days of my life. He died four days before my own birthday, and our daughter was born just under a year later- July is, at best, an emotionally turbulent month, for me.

      I particularly remember watching the neonatal neurological specialist manipulating my baby boy this way, and telling us that the electrical architecture of his brainwaves was almost flat, and that his anti-seizure medications were at toxic levels, but couldn’t be humanely discontinued.

      Mauve’s loved ones have a difficult road to travel…

      I want to hug them and tell them that it never goes away, but that one can learn to live, and find joy again…

      Maybe I want to hug me a little, too.

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