Stalker

Having a child with a chronic, incurable, progressive disease is like having a child who has a monster stalking them everywhere they go. You know it will never leave, in fact you know with certainty that it will one day strike. Even now it lashes out on occasion and sinks its claws into your child. As she cries, all you can do is take her back to the doctor, who will measure the wounds and try his best to treat them, but everyone is powerless to stop the monster. One day he will pounce, and when he does, it will take every ounce of strength in you and your child to fight him. She may succeed in holding him off another 10 or 20 years, or she may not. But for now, the doctors say, he appears to be calm. For now, they say, "just relax and enjoy her."

Just relax and enjoy her, and try not to think about the monster.

Until it looks like he is about to fight. Then rally your strength, gather your support, bring to mind what you have learned, and let the adrenaline wash over you...this is it.

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Yesterday I took Naomi for her next blood test since we first learned her kidneys had taken a decisive turn for the worst in late May. I had been reading up on the dietary changes we would need to be making soon: low sodium, low potassium, low phosphorus and so on. We seem to have something in our family genetics that predisposes our kids to dangerously high potassium levels since both Naomi and Toby had been hospitalized as infants for several days with that condition. So I was concerned that we'd hear Naomi would need medication to keep that level low. I had decided it was time to transfer Naomi's care completely to the children's hospital.  I was prepared for the worst.

When the nurse woke me with a phone call this morning I feared the worst. But, contrary to all reasonable expectation: all was well. Naomi's creatinine level, the marker of kidney function that had suddenly and dramatically risen in May and which the kidney doctor fully expected to continue rising had (miraculously?) come back down to the same level it was at last year to 0.92. Her phosphorus level was a tad on the high side, but the other electrolytes were all properly in line. Her tiny, atrophied kidneys are still chugging along, upheld I am sure by the finger of God.

I don't know what this means. I don't know which reading was the fluke. In the last year her creatinine readings have risen and dropped, then risen even higher and dropped again. This is not supposed to be the way the numbers behave. According to every doctor I've ever spoken with, the kidney decline is supposed to be gradual and predictable, not bouncing all over the place. We know for sure from her last ultrasound that the kidneys have atrophied considerably, and it is quite surprising how well they are functioning right now, given how they appear. How long they will keep going at this point is truly anyone's guess.

This is all great news, for now. But what makes it so hard to process is the "for now" part. It's difficult to know how far to let my guard down. But we are thankful to let it down, even a little bit.

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Then just as you are sure he is about to pounce, he slinks back to the shadows. It appears as if the monster is being held at bay, for now. You try your best to calm you nerves once more, to relegate the monster in your child's shadow to the shadows of your own mind. For now he is calm. For now she is "healthy." Just keep your eye on him. Just relax and enjoy her...until the next time he flinches.

Photo Album: The Fair 2013

We took the kids to the 4H fair yesterday evening to look at animals, rides, tractors, sights, sounds, and horse competitions.

Grandma and Grandpa Eby gave my kids their annual treat of a ride on the carousel. Elijah was absolutely thrilled when we put him on the horse:

And he was absolutely devastated when the ride stopped. It was all we could do to pry his clinging little hands from the bar as he sobbed, "No! No!" long after the other kids had already left the ride.

Thank goodness there were plenty of amazing animals after that to distract him from his broken heart.

Here is one of the most amazing fair experiences we've ever had: Meet Ollie, the 1800lb, 4 year old, Belgian horse--a gentle giant, who only wanted to play.

Naomi was fascinated at the sight of him.

And delighted with his nuzzles. Now I know how to get Naomi to smile naturally for the camera.

A little kiss for Emma...

Ollie liked my girls so much he began kicking at his gate to get out and play.

Hannah really liked Ollie, but she wasn't so sure she wanted to nuzzle with him. I love how she's totally plowing over Elijah here, to put a little more space between that horse's mouth and herself.

And yesterday's winning photograph: Ollie licking Naomi's hair. He must have liked that strawberry scented shampoo. This smile is worth a million dollars.

There were many other amazing sights and experiences at the fair as well. We spent over an hour at the horse arena watching 4H kids compete in barrel racing and keyhole racing. Naomi and I were both spellbound--the others not so much, so Matt took them for a walk to see the lights and rides. We watched fast horses and slow horses, spooked horses, rearing horses, and one that slipped going around a barrel and went down with the rider, but no one was hurt. It was fascinating and inspiring.

Is it time for the 2014 4H Fair yet?

The Beach Through Elijah's Eyes

They took me to a place called "beach"
Another world entirely
Where floor is gritty, air is hot
Where wet is good and dry is not

A giant bathtub full of friends
With birds that flew over my head
The ceiling was too bright to see
A world where walls are made of trees

My mother sat me in the dirt
Then laughed and said it wouldn't hurt
When I decided that I'd munch
A fistful of the sand for lunch

She held me in the giant bath
And didn't scold me when I splashed
She didn't try to scrub my back
I never even took a nap

No crib or highchair in that place
No rag to wipe my messy face
I'd never had such room to run
I'd never known that kind of fun

I ran into the tub some more
And ran until there was no floor
And for a second wondered why
It hurt to breathe this kind of sky

Until I popped back up again
In Mommy's arms and saw her grin
And with the floor and ceiling back
We shared a coughing sort of laugh

I thought it would be funny then
To dunk and cough and cough again
But Mommy frowned and called me "dense"
I think it's her that makes no sense

I didn't want to leave that place
When Mommy carried me away
She tricked me with a sippy cup
So cold and sweet...
Then I woke up

And cried to find myself at home
The land of "beach" completely gone
My mommy tried to soothe my cries
To hush my sobs and wipe my eyes

I fought to find the word to say
To tell her how I missed that place
But as my sobs grew stronger yet
All I could think to say was, "Wet."

The Beach

I went to the beach
because I thought
my children needed
more practice swimming
Duty-bound
I gathered the means
And slathered the cream
And felt exhausted
Just beginning








But the cool waves' kiss
and sea gulls' greeting
and the wandering puffs
in the blue abyss
Loosed the choking chains
Of duty
Freed my child's spirit
to hear them laughing











I went to the beach
Not knowing all the while
It was I who needed practice
Remembering how to smile