Two years ago last month I wrote the first of two columns about my friend, Becky Conrad of Burnsville. At the time, Becky had just been diagnosed with Lymphoma of the Brain, a rare form of cancer, and the diagnosis hit her hard. She’d already been through so much. 

As a child, Becky endured many hospital stays for a blood and kidney disorder, and then at age 9, was diagnosed with retinitis pigmentosa, a deterioration of the retinas that left her totally blind before she was out of her teens. But Becky was determined to live a normal life, so she married her childhood sweetheart and a year later, their son Joshua was born.

Even as a newborn, Joshua was sweaty nearly all of the time. Becky and her husband knew something was wrong, but for nearly a year, their concerns were dismissed as doctors believed it was nothing more than the standard new parent fears, or that the blind mother was to blame for her son’s failure to thrive.

Fortunately, though, a diagnosis was reached before it was too late. Joshua was found to have Type 1 Glycogen Storage Disease, a hard-to-control condition so rare that few physicians-then or now-understand how to best treat it. 

Basically, those who have Type 1 Glycogen Storage Disease (GSD1) can store the glucose their body needs in their liver, but they can’t release what they’ve stored. It’s kind of like having loads of money in the bank, except you can’t get it out and spend it no matter how badly you need it. There’s a long list of potential complications from GSD1, involving everything from liver and kidney failure to high blood pressure to tumors, and diet must be closely monitored at all times. 

What I’ve always found most bizarre about GSD1, however, is that as part of his treatment, Josh had to consume cornstarch every four to five hours, around the clock, to keep his levels in check. Since he was such a sound sleeper, Becky would get up at night to make certain he took it. For 19 years, she closely monitored his diet and cornstarch consumption, and it was when she was taking his morning dose to him that she found he’d died in his sleep. 

When she called a few hours later to tell me what happened, I left work right away and drove to Burnsville. It’s been a long time since I’ve experienced a day that felt so surreal, when I’ve felt so helpless and useless and completely empty of words. And it’s been a long time since I’ve felt so angry over anything quite like I’m feeling over the unfairness that Becky’s been dealt.

Her blindness should’ve been enough, but then there was Josh’s disease and Becky’s cancer and the awful car wreck they had while she was still going through chemo. There was the winter storm that knocked out the power in their greenhouse and froze all their plants. There was her husband’s emergency bypass surgery last March, followed by his employer shutting their doors before he’d recovered enough to go back to work.

And now Josh. Their gentle giant. Their talented musician. Their only child. 

I don’t know that I’ve ever attended a service as touching as his, where one red-eyed friend and relative after another stepped to the front to talk about what Josh meant to them. After all they’ve been through, the date for his service seems ironic–Friday the 13th. 

While driving home after watching my friend say goodbye to her son, I thought about something I’d written in response to a conversation Becky and I had shortly after her cancer diagnosis. She’d simply asked why, and I knew what she meant. Why her? Why then? Why that? 

I remember how ineffective I felt with my answer, “Sometimes there isn’t a why.”

I felt even more that way now. After a lifetime of fighting to fit, Josh had finally found the places where he could shine. Put a guitar in his hands, and he could do magic. In electrical school, he was a whiz. It was as though he was taken right when he was just reaching his stride, and I was having trouble making sense of something like that. 

Oddly, it was Becky who put things into perspective, reminding me of something I’d pushed out of my head. She reminded me of a time when I had told her how, while I hadn’t stopped praying for a miracle to cure my baby of acute spinal muscular atrophy, I had started asking if she wouldn’t be cured, that she not have to suffer. And that prayer was answered. Like Becky’s son, Camille died in her sleep. 

Becky told me that if Josh had lived longer, his condition would’ve begun taking even more of a toll on his organs. It was an unavoidable eventuality of the disease. Although losing him so suddenly and without warning had been hard, she knew her child hadn’t suffered. He’d been spared. 

That she could find the only element of possible good in all this has me in awe. I’m proud of my friend.       

 The Glycogen Storage Disease Assoc. has started a memorial fund in Joshua’s name. For more information or to make a contribution, contact Glycogen Storage Disease Program, Univ. of Florida, Box 100296. Gainesville, FL 32610.  http://www.gsd.peds.ufl.edu/index.htm

The post directly beneath this one wasn’t published in the paper, but my daughter worked so hard on it–and I was so touched by what she did–that I wanted to share it.

On Monday, Feb. 9, I got a call from my friend Becky (who I’ve written about several times before) to tell me that her son Josh had died. I left work and headed for Burnsville, where Becky lives. Since my columns are due on Weds., I told my editor I wouldn’t be able to do one this week.

Celeste knows how much I hate to miss a week, so she worked for several hours writing a column that she hoped would run where mine usually do, but unfortunately, my editor didn’t feel it would work. While I understand my editor’s reasoning that a lot of our readers aren’t familiar with Weird Al or the songs Celeste’s used in her story, it was still really hard to tell her all that work she did wasn’t going to be used.

Back when Celeste was 7, she wrote a children’s picture book that ended up being published. You’d think she’d have been thrilled, but by the time it came out, she was 9, and the book she’d done now seemed embarrassingly simplistic and dumb to her. Not only that, but the fuss adults made over her and the way her classmates treated her about it (not good) turned her against writing for a long time. She has the best story ideas of anyone I’ve ever met, but she won’t write. And then to help me, she wrote. But it didn’t work out like she hoped. 

Last night, we were talking about it and she said, “It’s ok. It’ll be the only rejection I’ll ever get.” I thought, “Wow! What a great attitude.” But she said it’ll be the only one because she doesn’t plan on writing anything else.

She isn’t being bratty or whine-y about it. Just matter of fact. She’s done.

Do I believe that? Not really. She’s not a quitter, and she’s so busy with other things that I expect it won’t be long before she’ll have forgotten the sting and be back at it again.

I’m touched that my girl did this for me. It feels good. I just wish it could’ve gone a little differently for her.

Hello people of this Earth. It’s me, Celeste Vingle. Karin Fuller’s daughter. My mom had to go out of town so I’m taking her place. About the only difference with me being here instead of her is that I don’t use big words. And I’m funnier. And I have a cuter nose. Ha, ha. See, I just made a joke (kind of). But it is true on some occasions. Okay, I’ll stop now and let you read this awesome column by me.

I plan to be the next Weird Al Yankovic. In case you’re wondering who Weird Al is, he’s this guy who does parodies (Hey! I used a biggish word!) of famous songs, changing the lyrics into things that are funnier. I’m a lot like Weird Al. When I was younger (I’m 11 now), I actually memorized the lyrics to one of his songs called “The Ebay Song,” but unfortunately, I’ve forgotten them.

I’ll give you a couple examples. There’s a song on the radio now called “Disturbia.” I changed it to “Dyslexia.” Here’s how it goes (the normal version first, then my version).

Disturbia, it’s like the darkness is light.

Disturbia, am I scaring you tonight?

Disturbia, ain’t used to what you like.

Disturbia. Disturbia.

Bum, bum, beedum, bum, bum, beedum, dum.

Bum, bum, beedum, bum, bum, beedum, dum.

Now my version.

Dyslexia, it’s like the darkness is snardkes.

Dyslexia, am I ginsarc you tonight?

Dyslexia, can’t read what you write.

Dyslexia. Dyslexia.

Mub, mub, mudeeb, mub, mub mudeeb, mud.

Mub, mub, mudeeb, mub, mub, mudeeb, mud.

I hope that doesn’t sound like I’m making fun of people who have dyslexia. I know some kids with it and see how hard it can be, but they thought it was funny and it’s good when you can laugh at yourself.

This next one is a song I hear on the radio all the time. It’s performed by Katy Perry.  

I kissed a girl and I liked it

The taste of her cherry chap stick

I kissed a girl just to try it

I hope my boyfriend don’t mind it

It felt so wrong it felt so right

Don’t mean I’m in love tonight

I kissed a girl and I liked it

I liked it

And now, my version! (When you get to the part about the turtle, I’m engaged to a turtle so that’s why that’s in there.)

I kissed a squirrel and I liked it

The taste of his acorn chap stick

I kissed a squirrel just to try it

I hope my turtle don’t mind it

It felt so wrong

It felt so right

Don’t mean he’s happy about it

I kissed a squirrel and I liked it

I liked it

I hope it doesn’t sound like I’m making fun of girls who kiss other girls (or squirrels).

And finally, Beyonce has a song out now called “Single Ladies (put a ring on it).” It’s one of those songs that gets stuck in your head. It goes

All the single ladies, all the single ladies

All the single ladies, all the single ladies

All the single ladies, all the single ladies

All the single ladies

Now put your hands up, oh, oh, oh

And now, here’s Celeste VINGLE’S version.

All the Vingle ladies, all the Vingle ladies

All the Vingle ladies, all the Vingle ladies

All the Vingle ladies, all the Vingle ladies

All the Vingle ladies

Now put your hands up, oh, oh, oh

I hope it doesn’t sound like I’m making fun of the Vingle ladies. That would be, um . . . awkward. And ok–I admit that wasn’t my best one ever, but come on. Give me a break here. I’m just a kid.

And now, I’m going to end this the way I always tell my mom to end her columns, but she never listens.

“THE END!”

For most of my working life, I’ve had an office all to myself. For the past year, though, I’ve been sharing space with two girls who seem to believe they’re competing for the title of biggest packrat.

Now, I’m the first to admit I’m no neat freak, and I often hang onto things that have long outlived their usefulness, but these girls cart home so much junk there are times there’s no room left for themselves.

To make matters worse, I’m something of an enabler. When I go on an organizing frenzy and have stuff to toss out, much of it goes straight to them. If they can carry it, they take it.

Back in December, I was working on the Gazette’s Christmas Fund, which involved opening a stack of envelopes, processing the checks, then entering the information into a spreadsheet. As I opened the mail, I tossed the empty envelopes to my left.  Later, when I reached around to get them, they were gone. I turned just in time to see Ethel, the head packrat, trying to force a stiff envelope through the small doorway of her shoebox while Lucy, her clumsy assistant, kept impeding her progress.

I should probably pause here to emphasize that this is my home office I’m talking about, and that technically, Lucy and Ethel are fancy rats, not packrats. They’re just really in touch with their ancestry. 

When my daughter acquired her beloved rodents last year, the deal was they’d stay in her room. But as rats are nocturnal and lack even a smidge of consideration for their host’s need for sleep, it wasn’t long before Lucy and Ethel were making so much noise (stomping grapes, packaging candy on a conveyor belt, practicing the tango) that they were evicted. 

I worried my new office mates would be smelly and annoying, but they’re surprisingly clean and well-mannered. I often lock our other animals out of the room so I can open their cage and allow them to run. Lucy and Ethel, however, share my aversion to exercise, preferring instead to sit atop their cage and gawk while I type. Eventually, Ethel will return to her shoebox and Lucky will climb onto my shoulder, then stretch out across the back of my neck.

If you can prevent yourself from thinking, “Good Lord-there’s a rat on my neck!” the experience can be rather pleasant. Rat bellies are soft, warm and ample, and feel somewhat like those microwaveable heat packs. I’ve grown to enjoy their company, and spend much time watching the two interact.

The brown and white Ethel is a food-hoarding homebody who excels at looking annoyed, while Lucy, who is butterscotch and white, is social and friendly, and unless offered chocolate, will choose human company over food. The two get along well, and I never gave much thought to rat friendships until last week, when I dropped a handful of old socks into their just-cleaned cage for them to use as bedding.

The girls went straight to work, dragging the socks into their shoebox and getting them arranged just right. All seemed to be going well until suddenly, their box began banging around. After several loud chatters and squeals (which I interpreted to mean, “You are NOT putting that brown paisley next to gray argyle!”), Lucy stormed out, shot down their three flights of ladders, and then sat in the corner to sulk.

Several minutes passed with no sign of Ethel, and Lucy’s anger seemed to be intensifying. I watched as she climbed to their box, snatched one of the socks, then raced back downstairs. There was no response from Ethel, so she did it again. And again, and again. Being a fair-minded rat, Lucy took almost exactly half of the socks they’d been given before deciding her carefully arranged new nest was just right.

She snuggled down among her socks, but kept glancing up. Nearly two hours passed before Ethel came down to check on her friend. At first, Lucy turned haughtily away, but Ethel began gently grooming her hair, and soon, peace had been restored in Ratland.

And all three of us packrats were happy again.