Friday, January 6, 2012

I am a bad mother of a kid with a heart defect

This morning I checked my calendar to confirm plans for Wren's cardiology clinic this month.  I thought it was on the 24th of January but I couldn't find it in the calendar.

It has been a whole year since the last checkup.  At Wren's last appointment we saw that his gradient (measuring the level of constriction) at his aortic valve was relatively stable, or if worsening doing so at a rate that was statistically insignificant when measured at 4 month intervals.

"Lets see if we can go a year between appointments" said the cardiologist.  "If you can handle that, it will give us a larger interval to measure any changes."

I said I could handle it because, with Wren being asymptomatic (as long as you don't listen with a stethoscope) its like having a totally healthy, gonna-live-forever, might-be-a-professional-soccer-player (not a golfer), can-go-on-a-roller-coaster kind of kid.  Its only in the awful wait for the results of the echocardiogram - that 20 minute wait in a bleached exam room with nothing to do but worry, you can still smell the gel and you feel like hacking the hospital computer terminal so you can just surf the web for pictures of Hawaii - only in those minutes do you have a "child with a CHD."

After that appointment last January, I called the Heart Center Scheduler and they said that since it was a year out, the calendar was not yet open and to call back.  I called back a month later and it was still not open, they said to call back.

But I forgot!

It turns out that Wren is due for his next cardiac clinic but he has no appointment!  The Jan 24th Date I was looking at was from last year!

So, I called today and the earliest available is March.  I have said that March is fine but asked them to check with the cardiologist to confirm that it will be okay to go 15 months between appointments.

Then I asked "So, if I totally forgot and never called again, would someone call me up and say "Hey, you have a kid with a heart defect who needs treatment?"

There was a pause.

Then [names changed] Susan who used to be Lance who used to be Jeremiah who used to be Sarah said "Well, we'd like to say "yes" but really, we have had cut-backs and there has been a lot of change-over and so, we might not be at that point yet."

So, really, heart parents.  It is as we suspected - we are in charge however inadequate we may be!

I am mildly concerned but since Wren is asymptomatic (except on the inside) we hope to enjoy three extra months before the longest 20 minutes in the world in the sterile room.  And I hope that the news then, is still good... or gooder.

Tuesday, January 3, 2012

Adventures in the land of the Snowy Owl

This afternoon I cajoled the kids into a small adventure up to the Skagit Wildlife area in search of Snowy Owls.  Typically, snowy owls live in the arctic but have been seen locally as part of a rare irruption into the region.  There was even one seen on the roof of the Ballard Library (I missed it).

NOT my picture:  From 12/29/2011

We drove out at 2pm into light rain and arrived at Big Ditch Slough a bit after 3pm.  We had already eaten most of the jelly beans and the fresh-baked thumbprint cookies.  We played 20 Questions to pass the time and Frost was banned because he kept "thinking of" things that were tricky like "death", "Diamonds" and "a hand" and then giving us ambiguous answers to our questions.

Thinking of "A HAND"
Q:  Is it edible?
A: I guess its edible.  You wouldn't eat it but someone might eat it.

As Josh said later "What are you thinking?  Of course hands are not edible!"

And Thinking of "DIAMONDS"
Q:  Is it like a type of substance, like mineral?  Is it like stainless steel, or a metal or some type like that?
A:  No.

And then he did Gasoline
Q:  Is it man made?
A:  No, its natural.  Well, its both man made and natural.

Q:  Is it man mad or natural?
A:  Both.
Q:  But if humans had never existed, would it still exist?
A:  Yes.
Q:  Its natural then.  So, is it bigger than a minivan?
A:  It has no form, no mass.
Q:  Does it have energy?
A:  No
Q:  Is it an abstract concept?
A:  No.
Q:  Well, WTF!  I give up.  Its another of your odd ideas, isn't it?   What is it?
A:  Its DEATH.
Q:  You're kidding.  I told you SIMPLE.  Like, nothing that is not in a book teaching kids to learn the alphabet.  A = Apple.  B = Bear!!!  Frost, you are banned.

Later Josh said:   "This is remedial 20 questions" 

I complained that his Thought Burrito was not a mineral but a plant! He says the categories are Animal, vegetable and OTHER.  I retort that animal = things of animal origin but Josh feels that includes only living walking animals.  Vegetables are also only plants that look like plants.  Once you cook them they are MINERALS. 

I need my family to support my version of the game (which we call "Animal, Vegetable or Mineral" Josh, not Animal, Vegetable, Mineral and Other abstractions).

We didn't find an owl, although we wandered in the near sleet and found many bullet casings from duck hunters.  The boys are fighting over who has more winchester 12 guage cartridges in their collection.

We did find trumpeter swans which were gorgeous but it was icy and there were high winds so it was hard to see through the water blown into the binoculars.

Snow geese on Skagit fields below Fisher Slough (Stanwood area)

Later, we headed to another wetland access but again missed the owls.  I took some lovely pictures of the half-light under the stormy skies of a 4pm dusk.

On the way home we encountered dangerous conditions - high winds, rain and burritos which would not unwrap.  At one point our car windscreen was flooded and we could not see out at all for 3 seconds which has never occurred to me before. 

Joshua said I did well to drive straight and brake but I would say that was instinct and you would do the same if someone threw a blanket over your windscreen when you were going 60mph.

Stormy conditions on I5

We are now preparing for the return to school and work tomorrow and I have not given up on seeing a Snowy Owl.

Sunday, January 1, 2012

You are Not My Mother

Frost had two soccer games today and Wren and I took a walk outside at halftime.  It was bitterly cold so I wrapped a shawl around my head.  Wren was upset by this.

He said, "You look like a person from another land!  You are not my mother!  Take it OFF NOW!"

He was so disturbed that I decided that I shall wear headscarves more often, perhaps wear saris from time to time and flaunt a bit of Zulu finery.    Clearly, my child has not been exposed to enough variety  if The Other is defined by a headscarf.

I returned to soccer still wearing my rebellious headgear and saw Mark (who hails from India himself).  "What's with the burka?" he asked.

Seriously, people.  Apparently we need more headscarves around here!   Woman of North Seattle, get thee a shawl and wear it!  The worst case scenario is that you are mistaken for an immigrant, a Muslim or a Waldorf teacher. 

Wren, this is not your mother. *
This is your mother.

* For those of you not in Seattle, the joke relates to a recent front page article in the Seattle Times which featured a woman in my neighborhood who has taken the Eat Local dictum to a new level by trapping and drowning squirrels to skin and cook in Le Creuset to feed to her upper-middle-class family.  Meanwhile, Dad shoots the baby goats to fill the Energy Star deep freeze.