Word Lovers

January 30, 2013 by Rieshy

Today a book came in the mail that my 6 year old had ordered and paid for with his own money: a used copy of A Light In The Attic that came complete with an inscription written in decidedly British handwriting, down to the crossed numeral seven-

Dec 2007,

To my darling Jack.  May you always find poetry in life!

love you,


Gloriously coincidentally our nickname for our 6 year old is Jack.  So he wondered why I signed my name Mum because he calls me Mutti, which is another long story in and of itself.  I found the inscription delightful, though I have decided to ignore the fact that the first recipient decided to heartlessly sell off his books online.  In a good spin, mayhaps the original owner found life so very full of personal poetry that he decided to sell his books cheaply in order to give back to the population at large. Um?  O.K. so that's a stretch.

At any rate many things make me happy about my son's package.
  1.  That my son got money and first thought of buying a copy of Shel Silverstein poetry and only later decided to buy another Bionicle with his leftover money.
  2. That after ripping open the package my son couldn't do anything else but sit with me and read.
  3. The fact that he loves poetry at all.  And he does, his favorites besides Silverstein are- Robert Louis Stevenson,  Karla Kuskin, and A. A. Milne.  
  4. That possibly, at some distant point in the future, my home will no longer be overrun with legos.

Here's one of my favorites from A Light In The Attic

The Sitter

Mrs. McTwitter the baby-sitter,
I think she's a little bit crazy.
She thinks a baby-sitter's supposed 
To sit upon the baby.


Pain Thresholds and Boys and King of the Mountain

January 28, 2013 by Rieshy

Rainy Days

I heard muffled thumps and bumps but as they were unaccompanied by screams or squeals of indignation I pretended all was quiet.  My intentional deafness rewarded me with alone time in which I was able to return several phone calls and pay bills and have a few coherent thoughts in my head for longer than 5 seconds.  Quite a mommy feat on day number four of freezy, rainy, muddy, miserable weather.

A door opened and footsteps signaled the approach of a noisy, happy 6 year old.  "We're hungry.  Can we have a snack?"  I looked up.  My beaming happy 6 year old is standing there with carpet burn on his chin and left check, his face is bright read with heat and his left temple has a brand new bumpy lump and abrasion.

"What happened to you!"

"Nothing.  But we made up a great new game.  We [we being he and his 5 year old brother] had to keep our big brother from getting on the top of my bunk bed.  It was great, we kept throwing him off the bunk bed."

Suddenly I realize I am a terrible mother.  Imagine my voice rising to a squeak at the end of this sentence: "You played King of the Mountain on the bunk beds?"

"No, we just threw Ben off every time he tried to get on."

Oh, that wouldn't be anything like King of the Mountain.

"Did Ben throw you off too and that's how you got hurt? "  I asked, trying to figure out how the thrower can look so damaged and readying a mental lecture for the 11 year old for tossing his brothers off a bunk bed.

He looked at me with total bewilderment, "No and I'm not hurt."

O.K. then.  Pain is obviously mitigated by the amount of fun one is having.

Mothering Quandary #473 lecture time or snack time first, and should the answer really just depend on the extended weather forecast?


Post Hospital

January 25, 2013 by Rieshy

As usual, after my son has a hospitalization triggered by his Fatty Acid Oxidation Disorder, I process things in writing and by doing a little extra research.  It's how I'm built.

I found Chronic Illness and Disability Through the Life Span, edited by Eisenberg, Sutkin and Jansen and perused it.  This startling insight made by a team of researchers made me laugh:

"Since parents of chronically ill children must cope with extraordinarily difficult life circumstances including compromised finances, restrictions of career mobility and the demands of treatment regimes, it is not surprising that they find the experience stressful.  Subjective feelings of depression and worry are common features of parental response to chronic illness."

Who would've thunk it?

As a word junky I was interested to read a description by researcher Prugh and Eckhardt, including handy new labels, for something my husband and I had noticed in our son's behavior every time he's "post-hospital".  They categorized response to illness into three, "sequential phases of impact, recoil and restitution."

"Impact encompasses the behavioral regression, bodily preoccupation, needs for nurturance, and massive denial of future outcome which accompany fears of death or annihilation of the self."  We've seen this time and time again with every post-hospital experience in the form of nightmares, the fear of sleeping alone, and the avoidance of playing alone.  This is when he's asked us questions like, "Mom, if a little kid is about to die and he cries out really loud for God to save him, God will save him- right?"

"Lessening of the child's denial and regressive self preoccupation mourning for the loss of self and attempts to reestablish control over his or her environment mark the recoil phase."  In our son this phase is evident when our son suddenly acts impatient when he sees that he's being treated with extra vigilance, or when he begins joking about something that happened in the hospital.

"Finally restitution brings increasing acceptance of the illness outcome, altered self-image and the implications for an uncertain future. "  This is the phase when we get questions like, "When will big brother have to start taking medicine like me?  What would happen if I didn't take my medicine?"

The special thing about chronic illness is that a child goes through these stages every stinking time their illness goes from chronic to acute.  With each flare up the child is older so their journey through the stages looks different each time, different to the observer and different to the child.  

It's dizzying.  I just flunked the "What would happen if I didn't take my medicine?" question by hedging so much that my son smelled deception.  Of course it didn't help that the question was asked in a crowded van while I was negotiating rush hour traffic after a long school day, nor did it help that my 5 year old immediately yelled out, "You would DIE!" as his succinct answer to his brother's question before I had time to say anything.

Which leads me to another quote from Chronic Illness and Disability... , "Our experience indicates that siblings also can be significant sources of support for the chronically ill child over the entire course of the illness but only if they are informed and involved."


The Difference Between Cats and Dogs

January 24, 2013 by Rieshy

In a picture:

5 yo dropped the dog.  Thankfully 5 yo boy is only 3 feet tall so the drop was less than 2 feet, yet the dog yelped and limped for a bit.  Littlest cried and then snuggled on the sofa in regretful misery only to be joined by the very dog he had just dropped.

Trying to imagine a cat doing that.... 
nope, can't picture it.

Forgiveness is a canine strength.


Homegrown Mythology

January 20, 2013 by Rieshy
Shelob's True Origins

We've been in our current home almost 10 years.  When we first moved here a neighbor warned us, in earshot of our children, "Don't let them play in the gatehouses, they are full of black widow spiders."

The neighbor's words were evidently taken at full value by my listening children.  Fine by me- sending my children off to play in the entrance of the neighborhood by a busy street was never on my to-do list anyway.  Fast forward 10 years.  10 years of which I've never had to tell a child to avoid the gatehouses.  I'm taking littlest man, all of 5 years old, walking with the dog.  On a whim I turn down into the entrance instead of our normal walk.

Halfway to the gatehouses Littlest becomes agitated.  "We are not allowed!"

Um, "You are not allowed without Mommy- but I'm taking you this way so it's fine."

"But the dog!"

"The dog is allowed with me too."

"But the spider!"

"What spider?"

"The spider what lives in the entrance and will eat us."

"What? Do you mean the spiders that are sometimes in the gatehouse?"

"No."  Whereupon he grabbed the leash and pulled me to a stop and pointed.

"It lives in there and if the dog, or someone little walks too close the spider will jump out and grab it and drag it in."

I've always wondered how long the phrase, "it's origins are lost in the mists of time," implies... now I know it means 10 years.



January 15, 2013 by Rieshy

Perhaps the directive, "Take all the toys and put them back into the toy closet the way they belong," was too open-ended.



January 9, 2013 by Rieshy

As a mature woman is wont to do, I spent time while in the hospital with my son mentally designing the superpower I would like to have.

What?  Mature women don't daydream like that?

Yes they do.  And sometimes they even ponder what they would do if they won a lottery, even though they never have and never will buy a ticket.

My superpower would be instantly transporting myself and anything I touch with my bare hands.  What mom couldn't use the ability to instantaneously arrive with a child at a Karate class across town?  There would be no need to schlep all the children; take your cell phone along and if your kids at home need you, poof- you're back home.

The homeschooling opportunities abound.  I could take both my littles to a park in Mödling, Austria each day for German language practice.  Field trips to the Parthenon, the Chagall museum in Nice, France would be just afternoon visits with no passports required.

I could visit my sisters, both of whom live over a thousand miles away, for tea.  I even briefly imagined transporting one sister to visit her son- but he's stationed in South Korea and my daydream was sidetracked by being arrested by military police and being held as possible spies.  Daydream gone bad.

Which led to the conclusion that a transporting ability needs to be coupled with some sort of slow morph into visibility so as not to attract undue attention.  Super-powers are very complicated things, I know because I watched Smallville.

Powers are also enticing things.  Especially when one feels relatively powerless.  I didn't daydream about being able to heal sickness and disease.  Why?  Because the very idea hurts and makes me admit that I don't have any hope for my chronically ill son ever being totally healed.

I wonder if it is universal that we don't skirt too near the aches of life when we are daydreaming? Perhaps daydreaming is a power, a power to be thankful to God for?

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Beeping In the New Year

January 7, 2013 by Rieshy

I was crazy busy over the Fall semester.  I started having free brain space as 6 months worth of being able to sleep a full night without having to get up to administer meds. to my 6 year old son started to accrue and payoff dividends.

My hair even got thicker.

I lost some weight gained in many E.R. visits and hospital stays from the last 4 years...

We marked 21 months without a metabolic crisis.

I started thinking that this blog, this blog I started as an escape valve for all my stressed-out thoughts on the topic of childhood chronic illness seemed a bit, well, superfluous as well as a time gobbler.

Then the flu hit my house.  The flu doesn't play well with inborn metabolic disorders.  My 6 year old had to go to the E.R. on New Year's Eve and ended up admitted to the hospital for several days until the flu ran it's course.

I now feel sorry for security guards nationwide- I'm sure they are praying for the gods of fashion to bring back simple leather flats; every woman entering the hospital (including me) set off the metal detector  because of buckles and/or large zippers on their boots.  Beep, beep, beep....

My 18 year old daughter had accompanied us to the ER; she set off the metal detectors once with her boots and once with the folding knife she got for christmas.  Beep, beep.

We got to watch the Times Square celebration.  Right as the ball dropped and the crowds cheered my son's IV occluded, BEEP, Beep, beep....

Strange times.  But, we left the hospital a few days later.  I left with the same number of children I went in with and that's what really counts.  I don't mind beeping in the New Year after all.


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