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Normally I'd be at the gym right now.  I love the gym, especially early morning populated-by-grim-and-quiet-zombies sort of gym.

I love going in the early early mornings because I can get up and remain semi-comatose until halfway through my work out.  The semi-comatose part is a vitally important part of my routine because my semi-comatose brain is very obedient to patterns.  All it knows is: sit-up, start moving.  My semi-comatose brain isn't awake enough to say things like- I'm tired, I'm sore, I don't have time today, chocolate is good, I really need to...  It just does what it does every weekday morning.

I love going super early because that helps me finish before the cute and well-attired women show up and snag all the elliptical machines.

I hurt my knee two weeks ago.  I'm grounded for a while.  Yesterday I wrote a sheet of knee and core exercises to do today.  At home.  I have a computer at home.  Computers are easier than exercising a hurt body.

My gym does not have computers.

Now my children are up and desiring silly things like breakfast and parenting.  My conscious brain is fully engaged and predictably/persuasively argumentative.

I miss the early morning gym.








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I opened the mail today and found many many more doctors, hospital and lab bills from the last two months.  I don't know for sure why I open them any more; I read them as if I understand them, nodding my head with pretend concentration and comprehension, when in truth I lost track several E.R. visits ago.  For all I know this pack included charges for worming shetland sheep in Montana. The bills will get paid and then there will be more bills because my kids keep coming up with creative ways to generate new bills.

I got to wondering what would happen if one didn't pay medical bills.  Can anyone repo your health?  Merely a short flight of fancy and then-

This came to mind.  It's funny and gross.  Really really really gross.  Definitely the kind of gross that's not for children sitting in your lap while you waste time reading my blog...  but funny.

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Sometimes it makes no sense:

Well o.k. then.  Glad I cleared that up.  I haven't even had my coffee yet.

Speaking of coffee, why is anyone kicking before coffee when that's clearly a violation of morning energy output regulations?

Oh, and who's whining now?





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Sometimes the end of summer comes with a crash.  Or a crash followed by a smash and then a shoulder sling.

The two minutes of, "Go to the car and wait for me to lock up," is a time rife with danger.  More clothing, shoes, and body parts have been damaged or lost in that tiny window of opportunity than during all other parts of the mothering day.

I need an immobilizer ray gun.  Picture it: I have all the kids dressed and holding required backpacks for whatever outing we are attempting... Then, ZAAAAPPPPP!  There my children stand, frozen to the spot in the driveway, until my purse, cell phone, calender, snacks and keys are in my bag. The house is quietly and efficiently locked behind me.  Then, ZAAAAPPPP! My children are unfrozen, and enter the vehicle in an orderly fashion while calling me blessed.

No muss, no fuss, no fractured coracoid apophysis* on a last frenetic trip down the slide.  No chance to inexplicably lose a shoe or leave a backpack resting behind a car tire.  No chance to engage in a "discussion" over who gets to climb in the car first.

Beauty is a ray gun. Schematics and proposals now being accepted.





*Pain generally precedes learning the name of obscure bones.

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My 5 yo ran into the house with a gleeful skip or two.  "Look what I made and we put on big brother's back!"  7 yo ran in behind 5 yo probably trying to prevent the show-and-tell before it had a chance for uncomfortable ramifications.

My first thought was, "Wow, It's spelled correctly." And then, "Wow, repulsive."  As I looked up at my apprehensive 7 yo and my smiling 5 yo all I could say was, "Let's not put any more of these on people's backs; I need to go into my room now."

As I shut the bedroom door I heard the 7 yo saying, with not a small measure of surprise, "I think she went in there to laugh."






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My 7 yo goes into a sort of zen state whenever he has to be in the hospital or E.R.  His eyes get bigger, he slows down, he shows almost no emotion, and considers every question carefully before answering.  I'm pretty sure it is because he is very suspicious of medical personnel.  That time he had the urinary catheter surprise when he was 2 has not been forgotten.  The happier and more energetic the staff the more suspicious my son.

A few years ago an overly bubbly nurse popped up by his bedside and started peppering him with questions in a babyish voice as she took his vitals.  I could see him go into his zen slow-down mode, times 10.  Her smile got bigger in response to his lack of response and her high pitched baby talk lisp even more pronounced.  I ended up talking for him- something I try never to do unless he is unconscious.

When she left the room he looked up at me with an extremely concerned face and said, "Mom, I think something is really wrong with that lady."

Last night we were at the E.R. and the nurse started explaining to my son that he was going to have to, "put a huggy thing around his arm and then give him a straw- that wouldn't hurt at all, except maybe a quick pinch and then they were going to get a tiny bit of... well they were going to run some tests, and he needed to be really calm."  Then the nurse was called out of the room.

My son turned to me and asked, "Was he trying to say that they are going to do an I.V. draw?"

Medical personnel: beware the baby talk, it induces lethargy and lack of confidence in some children.


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Unfairness is part and parcel of life.  Just ask the post office.
Sorry, bad pun.

Anyway, I've never been a big believer in overly protecting my children from unfairness.  It's just too big a job and I'm lazy.  I figure that the sooner they internalize this concept the earlier they can get over it and I'll spare the world 7 new adult-whiners.

Sometimes unfairness turns around and bites me.  My chronically ill 6 year old son has to have lots of portable snacks.  I try to stay away from processed (read expensive and full of junk) snacks but I do keep Extend bars around just in case.  I don't share them with his healthy siblings- they don't need them and see above mentioned- expensive.  Sometimes if we hit a time snag as we are out errand-running this means my 6 yo gets a snack tossed to him in the van but no one else does.

Yes, it is unfair.  But then again none of my other children will go into a coma if they miss a snack.  So we roll with it and mostly the older kids take it in stride.  Mostly.  The 11 yo complained with a quiet groan of, "Man, I'm hungry too." the other day.  I was too- but traffic had slowed us and we were way out of schedule and I have to admit I was perhaps a wee bit grumpier than normal.

I snapped, "Life's not fair- you may not get a snack but you don't have to go to the hospital either, so deal."  Yes, I know, stellar handling.  I am expecting my mothering award in the mail any day now.

What I didn't expect was the 6 year old's serious response.  "Yeah, life isn't fair because when I'm sick I get to go to the hospital and play awesome games on their computers and get go to the play room and get frozen yogurt from Ben and Jerry's and he doesn't."

Thankfully the 11 year old was wise/kind/precious enough to not respond other than smiling at me.



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A few days ago I was reading a quirky little non-fiction math book, Life of Fred- Butterflies, to my 6 year old- lest you think I was torturing him, he loves this math series.   Along with Don Quixote it discussed cardinal numbers and then the cardinal number for infinity.

What?  Infinity has a cardinal number, wait what are cardinal numbers again?" were my panicky thoughts.  Math generally induces panicky thoughts in me that I must suppress with a stern self-lecture of, "I must not fear, fear is the mind-killer." -because quoting Dune makes me feel more mathy. 

Aleph-null is the cardinal number associated with the set of all whole numbers.  It is the smallest infinite number...  Not that I understand this, and we moved on to some other activity.  My brain was ready to flush the whole concept. Except a couple of days later I was standing in the library stacks waiting for my 6 year old to locate a particularly coveted bound compendium of Calvin and Hobbes, which weighs more than he does, when a book caught my eye:  The History of Infinity.

Wow.  The last math book I read, Innumeracy, merely explained how stupid I was and then laughed at me as it demanded I return my college diploma but as I don't tend to learn from my mistakes, I checked it out in full expectation that I will not actually finish it or understand more than 10% of what I do finish.

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I had just pulled fresh hot sheets from the dryer.  My bedroom windows were open on this first warm day of the year when my 5 yo son sashayed into the bedroom.

"Can I help you make your bed?" he asked in an exuberantly loud voice.  He is the King of Clean and always on the spot to help; I think he must be a changeling.

"Sure thing Sweety."  I popped open the bottom sheet with a jerk.

My son grabbed the other side of the sheet from across the bed then stopped.  I looked up.  He had tilted his head to one side and with a soft, low, confidential and yet somehow encouraging voice he asked, "Did you wet your bed?"







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Today is Rare Disease Day.

My two youngest sons have a rare disease in the class of Fatty Acid Oxidation Disorders but even so I don't understand what having a rare disease day really means.  It definitely isn't a celebration as fun as Valentine's Day or Mother's Day.

Because everyday is rare disease day at our house.  Everyday I give medicine out 5 + times a day.  Everyday I carefully monitor diet and energy levels.  Everyday my boys deal with bodies that don't run at full efficiency.

But everyday also has the potential to be a great day.

Yesterday included.


My 6 yo just started Mixed Martial Arts.  The MMA school knows all about his illness and are happy to have him.  I don't know that I can adequately explain how that one fact makes me want to cry with happiness.    I also can't adequately express how happy it makes me to see him in uniform, on a mat, smiling, after seeing him weak, sick and exhausted in a hospital bed twice already this year.

So the only use I can think of for Rare Disease Day is to remind ourselves that: if you have a healthy body- use it, and if you have a body with rare disease- use your body anyway, in whatever way possible.

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The best place for a fit of the blues is a bathtub.  Filling it with melted chocolate instead of water would be ideal but then there's the cleanup to consider.  As a mom there is always the cleanup to consider.

Sometimes I wish I could resign.  Days like today when the exhaustion from a week + of family illnesses and hospitalizations finally hits.  Days like today when my prayers seem dusty and weak and I discover that my van's front windshield is inexplicably falling out?!? Days like today when it's gorgeous outside and my astonishing ungratefulness for all my blessings stare me full in the face.

Days like today when I want to resign.

Fortunately/unfortunately there is no one to resign to.  The towel belongs to me, if I throw it in I'll just have to clean it up- because as already mentioned- I'm a mom with the cleanup to consider, so instead I take a long bath.

The best part about blues in the bath is that eventually the water gets too cold for even the most hardy moper to hang out in and when you finally and wrinkly emerge, you are clean, dressed, and ready to go.

Blues in the bathtub, because the cleanup is included.




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The horror movie stats are in my favor. Here's the scenario  9 members in my family:  20 year old son is patient ground 0 with the zombifying virus, in our case the flu- strain A.  He passes it to 16 year old sister who succumbs because she was the red herring-heroine and one day later she passes it to 11 year old brother who, though a plucky crewman, is tragically wearing a red shirt.  With a sympathy gasp from the audience 11 year old passes it onto brothers, aged 5 and 6, probably during a wrestling match.

13 year old gets cocky and brags about her immunity so of course she is zombified next.  Father turns as well because who can shuffle around more grumpily menacing than a 6 foot father?

Mother takes 6 year old to the hospital and is put in isolation with 6 year old zombie.  Where she promptly confuses her toothbrush with 6 year old's tooth brush yet STILL doesn't become a zombie because every zombie movie needs the quirky and scatterbrained heroine who unexpectedly doesn't turn.  And because lets face it- using a sick 6 year old boy's toothbrush is just about as stupid and gross and graphic as any horror movie is allowed to get.

18 year old sister stays home and plays piano and does laundry while the zombies rage throughout the house.  Her virtue alone saves her from the apocalypse.

Phew, I'm just glad the movie is over.  Cheers to being scatterbrained.  Now on to cleaning.  They never show that at the end of the horror movie.



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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-


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.

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.

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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?



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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:

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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.



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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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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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