Monday, April 30, 2012

0400 Night-Vision Adventure

I wake up around 4AM to a constant pitchy noise.

Immediately reminds me of WWII bomb sirens, only without the siren-y modulations.

Lay there wishing someone else would take care of it, but I'm waking quickly. Might as well get up, dress, and put my eyeballs in.


Can't find the noise in the house; head outside. Definitely there.

Much, much louder now.

Wander the neighborhood looking for . . . ???

(Where X = Three Question Marks = Much Needed Emphasis)

Call the police to help, and learn they are already hunting for the source.

Success! I find it first.

Still on the phone with dispatch, I give them an address.

It's a car, and its horn has now been blaring for at least 10 minutes.

I have visions of someone slumped over the wheel, dead or dying, so I am both disappointed and not disappointed to search through the windows and find there is no one to rescue.

The police arrive moments later.

Patrolman #1 says, "We'll take care of this, ma'am," and begins knocking loudly on the front door of the owner's house.

(It would *have* to be loud as they hadn't heard their own SUV sounding off.)

So I meander home and grab one of my four ready-to-go fire extinguishers, just SURE there will be fire under the hood accompanying those crossed-wires.

But when they finally pop it open (under duress -- nothing on this car appears to be working), no fire. Just an overwhelming puff of ozone I can still taste in my throat.

And the horn stops.

I'm both disappointed and not disappointed. Sigh.

We disconnect the battery and all head home. Yet as I'm walking, and almost beyond belief, I hear a SECOND horn going off.

Imagine me squinting in the darkness, head cocked to one side, saying, "Noooo. (Pause.) Nooo. (Pause.) Really?"

(By the way, you don't have to imagine me saying, "Pause.")

Sigh. I'm already up, soooo . . .

The funny thing is that I thought I had heard some lovely horn harmonics from the get-go, but after finding the initial culprit I figured the dual-pitch was an effect of the dying SUV's final wailing moans. When in reality the second car's horn was hidden (I suppose) by the proximity (to me) of the first.

So now I'm BACK on the hunt. This horn is further away.

It's 4:30AM.

I'm the only one on the street.

Or am I?

Let's be honest. What's the chance of two horns getting coincidentally plastered at the same time. I'm just SURE there's a joker in the neighborhood who is breaking under people's hoods and crossing their wires.

But is it a simple joker?

It could be a mean-spirited vandal.

Or a criminal trying to steal cars.

Or a super-criminal using the horns as a diversion, two tiny sleep-depriving cogs in a sinister plot to heist one of my neighbors' no-doubt internationally renowned jewel collections. That I've never heard of.

I now hold my fire extinguisher like a weapon.

I'm lamenting having passed up those night-vision goggles with thermal detection at Wal-Mart yesterday. I make a mental note to add them to my shopping list, right below peach yogurt.

My fingers are poised over redial, ready to call Officer We'll-Take-Care-Of-This-Ma'am for back-up.

I'm honing in on the source of the second horn . . . almost there . . . almost there . . . whe-e-e-en! It stops too.

The neighborhood is doused in quiet.

Sigh.

Feeling both disappointed and not disappointed, I'm turning heel, when a car starts up and zooms (it zoomed I tell you!) toward me.

I act casual.

It's not like I'm a woman out alone at night for a butcher cruise through eel-infested waters.

Though, I do adjust my trusty fire extinguisher, good for all your defense needs: smacking, cracking, hurling, blasting, spraying, and let's not forget bullet deflection.

But seriously? This time I am PURELY disappointed.

No one in the car even yells profanities at me let alone slows down when reaching my position, a black-leather clad hand emerging from behind dark glass to warn me with a waggling gun, silencer glinting under the wan yellow-orange street light.

Nothing.

I get the impression the jewel thief may be late for work. You know, his "cover" job.

So I head home. Again.

Totally alert, there's no way I can go back to bed. And there's no way I'm going to the gym at 5AM. (This has less to do with my alertness and more to do with my character. Besides, I tell myself, it's probably not even open this early. Right? AmIright?)

Wondering what I should do now, I sit down at the computer, intent on wasting three hours of my life watching stuff get obliterated in a Blendtec on YouTube. Sigh.

What begins as a *thrilling* rescue ends as a disappointing / not-disappointing non-adventure where everyone but an old SUV is safe. And even IT *isn't* on fire.

Perhaps the most dangerous thing to happen this morning is a new blog post. And just think, like most of my neighbors, you could have slept through the whole thing . . .

Friday, April 20, 2012

Hirschsprung News



After seven weeks of silence, I intended to do a post that stretched around the world 3 times. I figured at least two of you would want to know about all the marvelous things we've done since I last wrote.

But I haven't had time.

So here it is in one loooooong sentence.

We (and by "we" I mean "Bridgette, Jeff, and/or myself, with or without friends or family, in numerous configurations") visited my hometown in Texas, started a business, met a famous author, got beat up on the playground (okay, that one wasn't especially marvelous), rescued two dogs, were finally promised fence re-installation by the company that tore up our yard 6 months ago, made friends with lots of local horses, took (with permission) hundreds of dollars worth of plywood from a destruction site, started building shelves in our garage with said requisitioned lumber, played with neighborhood kids, built with Legos and TinkerToys, played in the dirt, played in the snow, played in the mud, played in the sun, finally learned how to jump on a trampoline without crying, created a couple of iPhone apps, visited the Tracy Aviary, were once again promised fence re-installation by the company that tore up our yard 6 months ago, learned new stuff, wandered aimlessly, hung out with friends, worked-out, read books, saw Hunger Games, celebrated Easter, got haircuts, attended RadioLab Live, taught my last-ever class for my last-ever semester at BYU, partook in my first-ever weekend writing sabbatical, helped gory people up for a state-wide earthquake drill with over 900,000 registered participants, and (after much deliberation) decided not to host a team of Estonian Olympic ice-skating hopefuls at my house for a month.

We still don't have a fence.


(Don't worry, G & G Hoose, I still intend to write a separate post about our visit to Texas. But just in case it doesn't happen for a while, you've now received TWO full sentences in your honor.)

_________________________________________________________

Having no more time to update you than that, you might wonder why I sat down to write at all.

There is a reason for this post. 

I started this blog because of Hirschsprung Disease, so that I could keep everyone updated on Bridgette's status and share information and tips with other HD parents. In fact, How To Get an Ileostomy Bag & Wafer to Stay On Your Baby's Skin is still our most consistently hit page. 

Over the last year, as Bridgette has been sick less and developing faster, I don't write about it nearly as often.

March 22, 2012

Bridgette & Lahila @ Tae Kwon Do

But that doesn't mean I don't think about it.
  • I think about Hirschsprung nightly with her dose of Sulfasalazine and at least four times a day as her insides gush into the toilet.
  • I think about it as we constantly watch and readjust her diet, and as we try so, so, so hard to get her the nutrients and calories she needs.
  • It's impossible to ignore when her belly growls louder than any belly you've ever heard and all the kids around her point at her and laugh.
  • I listen intently when moms at the playground talk about their kids having vomited that morning. I wonder who they are and if they're contagious and if Bridgette touches the same slide they did, will she end up hospitalized.
  • I still don't know what parts of her digestive tract are non-functional. How many skipped segments? Should we biopsy her tongue?
  • Her Hirschsprung couldn't be more obvious when she wakes with a flat belly each morning but looks like she's swallowed a basketball by the time she goes to bed.
  • Certainly, it crosses my mind with each cup of "juice" I pour to keep her easily-dehydrated body from drying out. She still drinks almost a gallon a day.


But overall, life feels mostly normal for us now, just as we'd hoped and a little earlier than we'd imagined.

There's a little boy by the name of Blake Bradshaw who, like Bridgette, has Total Colonic Hirschsprung Disease (TCHD). Like Bridgette, he was given an infant ileostomy. They were both born in the United States in July, though Blake came along 3 years later. Like Bridgette, his mom and dad intended to do a pull-thru procedure after his first birthday. And just like us, they expected that he would eventually live a fairly normal life.


But I'm sorry to say that Blake died from TCHD this morning at 5AM. He was being cared for by great parents and great doctors at a great hospital, but things got complicated, as they so often do with Hirschsprung. He would have turned one-year-old this July. 

After performing a series of unusual procedures to try to save him, last night Blake's mom, Amber, announced via Facebook HD Support Groups that every hour was a victory.

I didn't sleep well last night, but I'm sure they did not sleep at all.

Two very different outcomes for our children. I know a lot of people ask the question, "Why me?" But so often in life I find myself asking, "Why NOT me? Why her child and not mine?" 

Neither question has an easy answer.

Of course I cannot express how grateful I am that Bridgette is doing well, but please spare a thought for Amber today.