Wednesday, December 19, 2012

Get them while they're ... warm-ish!


They are, in my opinion, the greatest places on Earth.

(Right up there with all those other greatest places.)

Ever wondered what it might feel like to walk into a bookstore and, for the first time, see a book YOU wrote sitting on the shelf?

Me too.

And having made the decision to be a writer waaaaay back in high school, _____ years later, I finally got the chance.

My first book, on a SHELF. At a BOOKSTORE.

It was so.... so.... it was just soooo.......

Well, let me tell you what happened.

First, you should know that having a publisher does not guarantee your book will ever be in a store.

Small publishers like Cedar Fort distribute where they can. Before I signed I was told they could get my book into Wal-Mart and Costco. Not Barnes & Noble, but still, they're big respectable stores.

But, um. No. My book wasn't / isn't /won't be at Wal-Mart or Costco.

And a major chain like Barnes & Noble? This is dream stuff. My book definitely isn't carried there, except on-line where there is absolutely no risk to them.

So, it's left to the holdouts, the carriers of the torch, the (fireworks and canons and release the white doves!) Independent Bookstores of the West TM.

(Just kidding. That's not a real thing. And I can't even superscript TM.)

Cedar Fort distributed my book to a number of small independent bookstores throughout Wyoming, Idaho, and Utah. Not only was I unfamiliar with the store names, but also, none of them appeared to be close to me.

Then my dear friend and writing-buddy, Cheryl, dropped by my house last week and told me she had picked up copies of my book at Deseret Book. As far as independent bookstores go, this is a famous one locally, and I had no idea it was there.

So. Exciting.

To give you an idea, this is a store that has seen the likes of David Archuleta book-signings. I know! Right!?

Well, actually I know because I image-searched Deseret Book, and David Archuleta book-signings kept popping up. And also I'm his biggest fan which is the other reason I know.

With happy hearts and too high expectations, that night -- about the time Bridgette should have been going to bed -- we both donned our gay apparel and went in search of personal history.

Second, let's cover something. 

This is my book. 

In case an actual picture isn't enough, I will now describe it to you. The cover is red. It has colorful shards of pointy glass on the front as well as bright yellow & white typeface.

It shouldn't be that hard to find.

By design alone, it should have been easy to locate.

Now, it's time to play
(shout it with me)

No seriously. See if you can find it.

I guarantee it's in the pic. Not only that, it's on the nearer side of the photo where the image is not yet obfuscated by distance and distortion.

Now, I know what you're thinking.

"What? You thought you were gonna be on that prominent entryway table? The one pyramid-stacked with shiny new releases, twinkling lights and hand-embroidered snowman doilies?"

No, no. Don't be silly.

And just so you know, I've also never imagined anyone recognizing me in public and asking me for a signature. Or interviews with The New York Times. Or hordes of paparazzi dogging my steps.

Never crossed my mind. Not even while I was typing that.

I get it. I'm a first time author lucky to be published at all, let alone gratefully picked up by a mid-sized independent book distributor. It's only an okay book. I admit that. I embrace it.


You'd think the store might like to display my book in an obvious enough fashion that it looks more like a bunch of books than an empty hole on the shelf.

You know, for business purposes.

So, that was a big clue to those of you who are still searching for my book in the photo. Look for what you thought was a small empty space.

Time to get silly.

I did finally locate it. Bottom shelf.

Right next to a famous Christmas author actually!

And that's when it hit me.

Why should best-selling Richard Paul Evans get all the face time?

So, after a quick *officially-first-pic* with my book and my tiny fry....

Bridgette and I rearranged.

I mean. Bridgette did it. Alone. I didn't even supervise.

(I so rarely do.)

We, I mean She didn't have to change too much. And she was careful to respect all the other authors. She didn't cover anyone else up and may have even improved the appearance of several lesser-known selections.

See! That's so much better.

Not quite resting-on-hand-embroidered-doilies, but more... perspicuous.

Also, notice how it suddenly looks like I've sold more books than Richard Paul Evans?

Bridgette's a genius.

Trying again.

After they kicked us out we left of our own free will and volition, I hit up one more Deseret Book.

I'm not sure which Deseret Book store Cheryl had visited earlier that day, but she told me there were only three of my books left on the shelf (which I'm pretty sure was post-her-purchase, so that was awfully nice of her).

That's why, when I entered Deseret Book #2 not long before closing, I actually thought it was possible that the truly empty holes on the seasonal shelf represented my sold-out piece of Christmas fiction.

Bwa-hahahaha! Can you believe I thought that? Oh but I did. And it was SO SUPER EXCITING!

Until I asked a helpful employee, in fear, if they were even carrying my book. 

What's it called, oh yes we carry it, where is it, I don't know, let me look it up, here it is, says we have 6 on the shelf, it's not there, that's odd, could you have sold-out, our system would have said so, then I wonder where it is, well did you check the other seasonal shelf?

The other seasonal shelf?

Why no. No I didn't. You've been so helpful.

Yes folks. The other seasonal shelf is about three rows back. And my book was there. On the bottom. In a corner. Fully-stocked. Available and invisible.

I didn't have the time, inclination, or space to put them all face-out this time, but I grabbed one more picture with Bridgette before management approached me with handcuffs and we bolted (the other store had called).

BTW: the lady who took this photo picked up my book! And then she had the guts to put it back right in front of me. But by the time I left, she had picked it up again and was carrying it around with her. Way to go decisive-stranger / new-best-friend!

So there you have it! 

My book! On a shelf!

This whole publishing enterprise has been one of amazement. And seeing my book in a store was no different. I experienced a wide-range of emotions but mostly amusement.

And the greatest thing? 

In one short week, my book really WILL be on a special table near the front of the store!

It may be marked 75% off... but hey! It will be unmistakably mine!

Tuesday, December 18, 2012

Clever girl.

So, you know that scene in Jurassic Park when Robert Muldoon, played by Bob Peck, hunts a female velociraptor only to realize that while she's kept him distracted, leading him casually through the trees, a second female velociraptor has been hunting him, sneaking up on his other side. And moments before she pounces and he's torn to shreds in an act of ancient-cooperation, he says, "Clever girl," giving a vocal high-five to natural selection and the intelligent yet carnivorous creatures that have earned his respect?

Gosh I love that part.

Anyway, I have my own clever girl.

She does pounce. She does eat meat. She has yet to destroy me.

But then, that's why we haven't had another child.

Can't risk being surrounded.

With Bridgette's ever blossoming ability to speak, I've spent the last two weeks writing down some of our more amusing conversations. I hope you enjoy reading them as much as I (for the most part) enjoyed having them:


Me: Where did you put the Christmas countdown ring? The one you took off the tree.
B: Maybe in the M&Ms?
Me: No. You didn’t put it in the M&Ms. Where did you really put it?
B: Maybe… in your belly button? 
(Me giving her a look.)
B: In Chewy’s belly button?


(during a car ride with the dogs)
B: Why does Chewy sniffing, sniffing?
Me: I don’t know. I guess he likes to smell things.
B: Ohhhh! Liiiiiike . . . bears. And cheese. 
B: Bears, wears, sares. That rhymes!

(Bridgette's new super-hero cape, hand-made by her preschool teachers as a Christmas gift!)


Me: What would you like for dinner Bridgette?
B: Hmm. I thiiiink… cheese sticks and whipped cream. That’s all I need, Mom.


B: I had a dream too! Big circle, big circle, full of popcorn and candy canes, and then I *jump* in it and *eat it all!*


B: Mommy, I win.
Me: Good job, Bridgette.
B: And you win.
Me: Oh thank you, Bridgette.
B: And Chewy wins and Piper wins and Daddy wins, and the WHOLE EARF WINS!

(Consider yourself winners, cyber-friends.)


B: One potty. Two potties. The world is full of potties. Why?


B: Knock Knock
Me: Who’s there?
B: Ummm… paintbrush.
Me: Paintbrush who?
B: (Laughing) Ah-hahahahaha! You said it!
B: Now it’s your turn.


Me: (talking to Jeff on the phone) I think we should eat pizza and watch Star Trek tonight.
B: (overhearing) I like Star Trek! Mom, bad guys.
Me: Yeah there are bad guys.
B: But the good guys kill the bad guys!
(Gets out pretend phaser)
B: Phis! Phis! Phis! Phis!


Me: That’s a stiff wind!
B: Wow! Yeah, that wind is really steep!


B: I’m building a house with the paper.
Me: Nice. I like it.
B: And then the people were walking and then the alligators. And then the alligators and the people.
Me: That’s a good story.
B: Mom. It’s a great story.


B: Look! 
(holding up my Christmas stocking and saying each letter) 
B: K-E-L-L-Y
Me: That’s right, Bridgette. Good job. Do you know what that spells?
B: Yeah! MOM!


(during a car ride)
B: (says something cute; I can't remember what)
Jeff: Bridgette, you are very special.
Me: And we love you very much.
B: Mom, everyone’s special. Even moms and dads.


Me: Bridgette, do you know what a gun is?
B: No. 
Me: Are you sure? Do you know what a gun looks like?
B: Yes. Good guys shoot bad guys.
Me: Yes. Sometimes. But sometimes bad guys shoot good guys.
B: Oh no!
Me: I know. And yesterday there was a bad man who shot some people.
B: Oh no! (eyebrows furrowed) They die?
Me: Yes. He was a very bad man. He shot 20 children.
B: Oh no! I so sad.
Me: Me too. It makes me cry.
B: Me too. Mom, why bad man shoot children?
Me: I don’t know. He shouldn’t have done that.
B: Nooooo.
Me: I want to tell you what to do if anyone tries to shoot you, okay? This is important.
B: Okay, Mom.
Me: What do you think you should do if a man has a gun and you feel scared?
(B swings her fists and gnashes her teeth.)
Me: Yes, if someone tries to steal you, that’s what you should do. And scream. But if a man has a gun, I want you to run away as fast as you can and hide and be very quiet.
B: Why run, Mom?
Me: Bullets are very fast. You need to get away as fast as you can and hide in a closet or something like that and close the door and be very quiet. Do you understand?
B: Yes, Mom.

And I believe she did.

A Hirschsprung Hooray!

(Lorax Christmas Tree, PCMC, Riverton)

Hello friends!

We started this blog as all things Bridgette. And initially all things Bridgette happened to be all things Hirschsprung Disease all the time.

In the last year, Bridgette's health has been so good comparatively that I've basically stopped writing or, when I do, picked completely random topics to write about.

But today I'm back to Hirschsprung news.

On Wednesday, 12/5/12, I took Bridgette back to Primary Children's Medical Center for a check-up with her pediatric gastroenterologist, Dr. Janet Harnsberger.

When Dr. H walked in the door, she looked at B and her first words were, "She's so big! And beautiful!"

Then she looked at me and her second words were, "You look younger."

How would you have responded?

I think I laughed, nodded, smirked, shook my head, snorted and said, "Thank you," all at the same time.

My Dad says, "Age and chronology are two different things. Some years you get older. Some years you get younger."

Too true. Amazing how much you can age or anti-age, dependent on your circumstances.

So the last time we'd seen this doc was in March of 2011 after almost two weeks of hospital hell.

Those weeks stretched out into more than a month before we saw the improvement we needed to remember that life does in fact exist outside of zero sleep, non-stop diarrhea, and rivulets of tears and blood.

So, is it a surprise that I look younger now? Not so much.

What WAS a surprise is how well Bridgette is doing!

We did a blood draw, and I think Bridgette literally didn't blink. She thought it was cool to see her own blood in test tubes.


Metabolic blood panel:
Blood salts, sugars, kidneys, liver, calcium and phosphorous = ALL NORMAL

Clotting (PT/INR):
Vitamin K = NORMAL

Vitamin D:
A fat-soluble vitamin, meaning results are indicators for other fat-soluble vitamins, like vitamins A & E = NORMAL

Vitamin B12:
A water-soluble vitamin, if normal once, should always be normal, and acts as an indicator for other water-soluble vitamins like all B vitamins & vitamin C = NORMAL

Helps synthesize and repair DNA, aiding rapid cell division and growth, and produce healthy red blood cells to prevent anemia. Sulfasalazine (Bridgette's daily medication) can inhibit folate = NORMAL

(Bridgette, post-blood-draw, and Dr. H)

As the exam continued, I heard Dr. Harnsberger giggling. She's a no-nonsense woman, so it was a little disconcerting.

*Here Are Dr. Harnsberger's Exam Notes*
[insertions = mine]

Beautiful, rosy, warm, busy, engaging
Skin hair nails all good
Eyes clear
Throat clear, no thrush
No lymphad, NI thyroid
Lungs clear
[means audible bowel noise, a good thing]
Palpable bowel loops
[meaning when she lifts her shirt, you can see clear outlines of her intestines, not a good thing, indicates distension]
No hernia
Bum good
DTR good."

(Later that day, celebrating at the "beach.")

*Here is Dr. H's Assessment*

Super everything after colectomy.
No trouble with low dose sulfasalazine.
See in a year."

Let's not forget her Height-for-age and Weight-for-age centiles:

From birth, B had always popped around between ~10-20% in weight, but when she was in the hospital the last time, she puked and had diarrhea for two weeks straight. She lost several *pounds* of weight she couldn't afford to lose. By the end of that visit, she looked skeletal.

*On 2/23/11 *

Weight 22.93 lbs
Centile = 1% 

Height: 35.98 in
Centile = 54%

But in the last year, once again, we've seen a lot of positive trends:

*On 12/5/12*

Weight: 36.16 lbs
Centile = 46%

Height: 39.88 in
Centile = 31%

As the exam continued, much of it entailing questions to me about Bridgette's development, eating habits, attitudes, abilities, etc., Dr. H. just kept saying, "Wonderful! Wonderful!"

I said, "I get the impression this is unusual."

She responded, "This never happens."

Shaking her head. "I've never seen a Hirschsprung child do this well. And do this well this early. Especially one with a total colectomy. I've never seen one of my similar patients begin to potty train before about 5 years old. And if you had asked me about Bridgette a year and a half ago, I would have guessed she would never potty train. To start holding her bowels a year ago? Unbelievable."

Now, I'm gonna go ahead and admit that not everything is perfect. Not to be a downer, but we keep it real here. This is a blog where you learn what's really happening.

For example, B has to go potty about 6 times a day. Not just go potty like you or I go potty. She has to empty everything out or we start seeing those bowel loops protruding inside her belly.

You know how you can see an emaciated person's ribs, clearly defined under their skin?

When Bridgette is distended, which happens nearly every day, you can see her intestines in the same way you can seen an emaciated person's ribs.

It's quite a sight.

And when her Ileal loops are visible, it means trouble. Pressure, lots of pressure, created through the natural process of accumulated gas, liquid poop, and acid. Enough pressure to blow her up like a balloon and explode. Unlike most people, she accumulates all three extremely fast. Not only is it the precursor to explosive vomit, but if she doesn't vomit, it's the precursor to perforated bowel and potential life-threatening septicemia.

The trouble lately is she's scared of the potty.

Like. Terrified.

We've had to bring a pint-sized plastic training potty into the bathroom at home, and she uses that. Which means we have to empty the receptacle and clean it and her up at least 6 times a day. And we're talking explosive diarrhea here with a lot of force behind it.

It's messy.

In addition, she's having some accidents lately. Explosive accidents. It's no fun for anyone. We're also not sure why it's happening, but we think it's related to her new fears, the result of which is that she doesn't always de-pressurize as often as she should.

Even though potty-training issues are not out of the ordinary for HD kids, we went over six months with a perfect record, so it feels a little like moving backward. Still, compared to last year, life's a breeze!

The potty fear came on suddenly, and she talks about the "Flushers" as though they're monsters in the toilet. From what I can tell, she's afraid of falling in / getting flushed down, and somehow the "Flushers" are a part of that. I hope that as time marches on, she'll naturally grow out of that worry.

It doesn't help that I once convinced her to use a giant public potty (that she honestly *could* have fallen into, it was so big compared to her).

It flushed underneath her.

Loud, horrendous, water spraying, terrifying experience that that was...

Public potties are right out.

And not just the auto-flush ones. Little. Big. Auto-flush, self-flush. Family-oriented. Big stall, little stall. No stall. They're ALL out. Right out.

I've been asking fellow-HD parents for advice through Hirschsprung support networks, but if anyone out there in cyber-happyland has advice, I'm taking all suggestions.

(Shh... telling Big Bird a secret.)

Nowhere were our potty woes more apparent than at the same hospital visit about which I've been writing.

She hadn't been potty all day (this was around 2PM), so we needed to take an interim-exam potty-break, especially considering her bowel loops were practically sticking out of her skin.

I tried my darndest to find a suitable potty.

After some explaining and referrals, a wonderful understanding nurse escorted us to another floor, through some limited access doors to a post-surgery area and introduced us to a tiny, manually-flushing child's toilet in a family restroom.

The nurse even got Bridgette a red-flavored slushy.

She left us, and I closed the door for privacy. (B is into that these days.)

Did I mention that NO public potties are suitable? I think I did. No matter how perfect and small and lovely the potty.

My first effort: reward-based incentives. (Slushy! Ice-cream! Bouncing on the bed!)

This used to work.

Then I progressed (progressed? Not really. What's the opposite.... anti-gressed? degressed? non-gressed? regressed --- ) through pleading, logic, example (me on a tiny potty? yep!), begging, silence, more rewards, more logical explanations, more pleading, removal of rewards (no ice-cream), and finally my (vain) effort to pick her up and physically sit her on the potty.

Bridgette did her best to bury herself in the corner. And screamed.

No. Did I say screamed?


Arched, rigid, panicked screaming. Like I've never heard before.

That's about the time the nurse came back.

"Hello? Everything okay?"

No. Nothing is okay.

I've been kneeling contorted on the floor of a hospital bathroom for 30 minutes, sweating with the effort of trying to get my kid to go potty. I'm a terrible parent. We're both miserable. I hate this. And I'm about to cry.

"Oh. We're fine! Just... trying... to go, you know. Potty."

"Are you sure? Because I'm concerned you're abusing her. Should I barge in and rescue your child from the atrocities you're committing on the other side of this door? I'm about to! Just thought you should know!"

She didn't really say that. But that's what she said without saying it.

Finally. I gave up.

And I ate her slushy.

(Not all of it. I shared.)

All of that to say that our lives are not normal. They're good. They're great! But they're not normal, and we still deal with stuff in an average day that is slightly harder than what might be average.

If such a thing exists.

For example, no matter where we have to go, what we need to accomplish, or what we WANT to do in any given day, we have to plan our schedules around her needs, so we can get her home to her special training potty.

Or we have to take her potty with us. We recently drove to/from AZ for my brother's wedding, and we carried her potty with us everywhere.

It was pretty awesome!

"Congratulations! Where should we put your gift? No, no, don't worry. Not the recently-used toilet. Your gift is under my left arm."

Despite all that, these days, mostly we're having fun.

Bridgette is delightful.

She fills my world with joy.

She's active, clever and spry. She's energetic and sweet, sun-up to sun-down.

She's also a handful. She's less sensitive than she used to be to touch, but she's still got some ... specific ... ways of processing tactual sensations, emotions, and wants/needs.

She's inquisitive and enjoys learning, a broad range of topics. Her top interest currently is the human body.

But mostly she likes to play -- play, play, play all day.

Her mobility is a thing to behold. Her speech is coming along nicely. Not only can I understand most of what she says now, but other people can too. The hardest thing for me is when she switches topics mid-sentence, from something resolute and obvious to something abstract or imaginary.

"Bridgette, what do you want to eat? Do you want cereal?"

"No, Mom, no cereal. I want .... a (semi-garbled) ... "

"You want what? An eggshell?"

"No, a cashell. A cashell! " Grump, grump. Stamp foot.

"I know you're frustrated. I'm trying to understand. Can you point to it in the fridge?"

Stomping in the opposite direction and pointing out the window.

"A cashell! And a boat!"

Imagine me staring out the window, open-mouthed. For a long time. Then turning and doing the same to her. Big, codfish mouth.

That's my thinking face.

"Oh! You mean, you see a castle and a boat? in the clouds?"

"Yeah! In the sky, Mom! It's a nice day."

"Yes. It is. Now, what do you want to eat?"

In my mind, I give myself blue ribbons all the time. It's my version of, "I should get a prize for that." You should see my collection! I have a room that's full of ribbons and trophies. A room in my head.

But the ultimate prize goes to Bridgette. You know, for being her.

I don't know why she has done so well. Some of it is parenting and love. Some of it comes from the influence of her family, cousins, teachers and friends. Some may come from all of your faithful prayers, though I know a lot of prayerful parents far more faithful than me whose children are not doing as well. Still, we are grateful for all the love and prayers that have been offered up on her behalf, and I won't dismiss them as a blessing to us all.

Most of it though? I think it comes from her. She's a fighter. Strong-willed. Amazing.