Cookies 4 a Cure Is Back!
Nick and Emily will kick off this year's Cookies 4 a Cure booth at the Grayslake Farmers' Market Wednesday, July 1, from 3:00 to 7:00 p.m.

They started their two-day bake-a-thon yesterday and will work furiously today to get everything ready for their 2009 debut.

Nick is concerned that the lousy economy may hurt sales, so dig the change out from under the couch cushions (thanks for that tip, Kelly!) or check under the seat of your car, and if you're in the neighborhood, come on out and buy a cookie! You'll be glad you did! (And you'll be back on July 15 and August 12...)

A Kiss Is Just a Kiss (Or Not!)
Zacky has really wanted to go the movie “Up,” and since the weather was chilly and overcast today (what’s new?), we decided this afternoon was as good a time as any. 

Zacky was a real sweetheart, rubbing my arm when he heard me sniffle during the movie and whispering, “It’s okay, Mom, I think there will be a happy part at the ending.” 

He was right, of course, and we all ended up thoroughly enjoying the movie (though Jim and I agreed that kids’ movies are some of the saddest movies we ever see).

On our way home, the sun broke through the clouds, and the kids began clamoring for a trip to the park. Jim and I looked at each other, with one of the themes of the movie fresh in our minds—that the ordinary moments are often the most memorable ones. Why not?

So we made an impromptu stop. The kids immediately started up a game of tag, but Jim and I—sitting on a nearby park bench—soon noticed that Zacky’s 5-year-old legs put him at a severe disadvantage.

I nudged Jim. “Go play with them,” I suggested. “Nick won’t be so cocky if you’re in the game!”

Sure enough, the game grew considerably livelier—and louder—with Jim in the mix. He ran down Nick, he lifted Zack up to the monkey bars to get Emily, and he threw up obstacles for Nick and Em that helped even the playing field for Zack. With all the laughter, good-natured taunts, and squeals, I was itching to get in the game.

So I did.

I waited for Zacky to be “It” again, and called him over to the park bench where I was soaking up a few precious rays. 

“What?” he panted, pushing up his damp bangs.

“Touch my arm so I’m It, and then I’ll ask Dad for a kiss and get him!” I whispered conspiratorially.

Needless-to-say, he loooved that idea! He surreptitiously brushed my arm, then ran off again.

“Honey, will you give me a kiss?” I immediately called to Jim, all innocence and sweetness.

Jim, of course, had seen the whole thing (it’s not like I can hide!), but he gamely played along. He swooped in for a kiss, as I playfully tapped him on the shoulder.

Zacky, gasping for breath through his peals of laughter, squealed as he jumped up and down, “Dad, you're It! We tricked you!” 

An ordinary moment, but one I will hold in my heart forever.

“B 2 Skrace”
“Can you play ‘B 2 Skrace,’ please, Mama? Can you do it? Can you play ‘B 2 Skrace’ on the radio?” Zacky begs, bouncing up and down on his toes.

B 2 Skrace? Hmmm...

“Please, Mama? I just love ‘B 2 Skrace’!” I notice that Zacky is careful to place equal emphasis on each syllable, making B-2-Skrace sound almost like a chant.

B 2 Skrace...B 2 Skrace...starting to sound familiar...

I mutter it aloud—“B 2 Skrace...B 2 Skrace...”—chanting yet slurring the parts into a mash-up.

B2Skrace...B2Skrace...B2Sgrace...Bdisgrace...bigdisgrace...big disgrace...

Got it!

It’s “We Will Rock You” by Queen.

And once again, my sole ALS super-power—crazy good interpretive skills of the messed-up language of the five-and-under crowd, due to my personal familiarity with slurring, incomprehensible speech—saves the day!

Lasagna Dinner: Round Two
So, truth be told, I wasn't really feeling much up to cooking Tuesday night following the Great Grocery Cart Crash of 2009. In fact, I kinda thought maybe we should just do carry-out for the rest of the week.

But with the ingredients already purchased--at great cost to me--I wasn't going to let them go to waste either. Thanks to generous help from Nick and Zack, Jim brought Emily home from gymnastics to more or less (okay, less) the scene I had imagine for Monday night. 

And despite the element of surprise being spoiled, I think Jim appreciated the gesture even more knowing what effort it took just to try. I guess nothing says "I love you" quite like purple-and-black bruises...

“Clean-up on Aisle...uh...at the Front of the Store”
I was feeling energetic yesterday (note: definitely past tense). And we needed garlic bread to go with the lasagna dinner I had planned. So, since it was a beautiful day and I would already be out and about, I thought I’d stop by the store after picking Zack up from preschool as a surprise for Jim to save him a trip (admittedly, not the most exciting surprise, but luckily he doesn't expect much).

As we headed into the store near the produce area, a new idea took hold. I could really surprise Jim with one of his favorite appetizers: caprese salad. He would love that! And what if we made a fancy dessert? Something chocolate-y and gooey, with whipped cream and of course a cherry on top? The kids would be totally excited about that! I imagined their surprised faces and decided to make it happen. (See, I told you I was feeling energetic!)

As we snaked through the aisles, my excitement over my little plan was building, and Zack and I were laughing and joking and having a great time. Zack cheerfully weighed the tomatoes, carefully selected the best container of fresh mozzarella, and helped me choose a balsamic vinaigrette (he thought Emeril looked “cool” and like he probably made good dressing).

As we chatted and shopped, Zacky blurted out a random observation: “You’re a really good shopper for an ALS person!” (This refrain—“you’re a really good _______for an ALS person”—has become common in the last few weeks, as if he’s just now recognizing that ordinary tasks are harder with ALS, and he wants to acknowledge my efforts).

As we neared the frozen food aisle, I spied the greeting cards and remembered that Jewel carries a few paperback books in that area. Jim has been reading a ton lately while he works out (at least, he reads while he bikes; he hasn’t yet figured out a way to read while swimming laps), and he’s been lamenting the fact that he needs to find a new series or author.
 
I could really add to his surprise by having a new book by his place at the table, I thought. I pictured Jim coming home to the smell of homemade lasagna, heading into the kitchen to see me pulling a platter of caprese salad out of the fridge, then turning to see the table set with a little gift at his place. Perfect. It might not sound like much, but he would know the effort I went to just to make a trip to the store—and besides it’s the thought that counts, right? He would definitely know I’d been thinking of him. We headed over to see if we could find something suitably political-thriller-ish in the meager grocery-store paperback selection. After rejecting some romance novels that Zack recommended, I found a cross between political and medical thriller that sounded promising.

As we finally nosed our way into the checkout line, Zack challenged me to a race unloading the cart. My trash-talking 5-year-old beat me handily (his “you’re going down!” seems strangely prophetic in retrospect), then helped me put the last few items on the conveyor. While I wrote my check, Zack fell victim to the checkout lane displays: “Can we get some gum? Can I get a candy bar? Can I get a balloon?” While I held firm, the kindly cashier offered Zack a bright orange Jewel sticker as a consolation prize. He was thrilled and began sticking and re-sticking it to various parts of his body.

With a long line of harried shoppers behind us, we scooted forward and parked the cart near the front window. I am very self-conscious of how slowly I move, and I always try to get out of the way as quickly as possible so others won’t get impatient with me.

I stepped alongside the cart to reach my jacket, slipped it on, and then helped Zack straighten out the inside-out sleeves of his coat. Leaning forward to help him get his arms in, I kept my right hand on the side of the cart for balance, while he put his orange sticker on my knee and laughed. I smiled, removed the sticker, and put it on his tummy. When I straightened up, the cart rolled slightly and in that instant—with that tiny movement—my heart thudded into my stomach as I quickly realized what would come next. No, no, no…

I flailed wildly with my left hand, trying desperately to grab the side of the cart and regain my balance. But it was already too late.

As my mind flitted from one disastrous outcome to the next, the cart raised up on two wheels as if in slow motion—why does falling always seem to take an eternity?—reached its tipping point, and then crashed to the ground, taking me with it and pinning me under it in an awkward tangle of limbs and steel.

Cashiers, baggers, and shoppers sent up a collective gasp worthy of a four-star horror movie. I flushed with embarrassment and wished I was anywhere else (yes, even having a EMG) as the Jewel SWAT team leapt into action.

“Just stay where you are,” one employee commanded—as if I had any say in the matter. (Fortunately, she did not pull out a roll of crime scene tape.)

Okay, but could we at least get the shopping cart off me??? I wondered. Or maybe put a bag over my head? (Paper, of course.)

Another employee seemed to read my mind and gently lifted the cart off of my legs and abdomen. I struggled to sit up and glanced around at my audience.

“I have ALS,” I explained to everyone and no one in particular. Blank stares. “Do you know what ALS is—Lou Gehrig’s disease?” Apologetic looks, but still no recognition. How is that still possible?  I marveled, longing to grab a microphone and turn this into a teachable moment for everyone who had witnessed my fall.

I gave up on my explanation and began the familiar self-assessment: head—fine, never even hit the ground (woohoo!); legs—bruised but fine; arms—left one a bit scraped but fine; the rest of me—fine, except for my wounded pride.

Zack, unfazed, placed his bright orange sticker on the top of my head and grinned.

“I don’t think your mom wants a sticker in her hair!” one of my rescuers scolded. Zack’s grin faded, and he looked at the floor.

Are you kidding me? I thought. I have freaking ALS! I just flipped a loaded grocery cart on top of myself and brought the entire store to a standstill! Seriously, I know you mean well, but the sticker is the least of my problems.  

And she definitely did mean well. We simply saw the sticker-on-the-head moment from completely different vantage points. She, a stranger to ALS, was alarmed at my fall and saw the sticker as a distraction that wasn’t helping; meanwhile, I’m used to falling (albeit not under a cart).

Frankly, I was relieved that Zack was being his usual, playful self and didn’t seem to be traumatized by my crash. And I was way more alarmed by the fact that nobody seemed to know what ALS or Lou Gehrig’s disease was than by his sticker antics.

As another Jewel employee appeared on the scene to offer his help, I realized that the ring of workers had thus far shown remarkable restraint in not attempting to lift me from under the arms. I’ve learned from experience that for many people, the first instinct is to want to “fix” the situation—to try to get me back onto my feet as quickly as possible. There’s something just plain uncomfortable about leaving someone lying or sitting on the ground after a fall. But grabbing me and trying to yank me upright never works (because I need to get my legs under me to push up) and is actually quite painful. I noticed the SWAT team getting restless, and I decided not to chance it.

“I’m going to need to crawl over to that bench to be able to get up,” I said quietly to the nearest woman. I didn’t relish the idea of making an even bigger spectacle of myself, but I needed a sturdy support. And my desire to get out of there by far outweighed any concerns for my (already irretrievably lost) dignity.

She looked taken aback for a moment, her face registering the same reluctance I felt. “How about this stool?” she suggested, pulling over a stool with a spinning, slick vinyl seat. I got to my knees and gamely attempted it, but, as expected, the seat spun away before I could get even one foot under me.

However, before I could begin my crawl of shame, two other employees whisked the bench over to my spot on the floor. I smiled gratefully, pushed up, got my feet under me, straightened, and sheepishly offered my patented, stuck-the-landing “Ta-da!” with a (one-armed) flourish to a smattering of relieved chuckles.

And it was finally, mercifully, over.

P.S. Needless to say, we did not have homemade lasagna for dinner last night. Or caprese salad. Or a fancy dessert. Or a surprise by Jim’s plate. It’s all back on the agenda tonight, though. Wish me luck! 

Thank You, Michael Jordan
This week, I walked three times on the treadmill, totaling 1.3 miles in a little more than an hour. Not much, I know, but way more than the nothing to which I've grown accustomed. And, as Zacky beamed, "Mom, that's really good for an ALS person!"

I couldn't have done it without Michael Jordan.

A couple of weeks ago, I flipped over the Chicago Tribune and saw a sort-of familiar face sitting shoulder-to-shoulder with Scottie Pippin. And yet, I wasn't sure. I mean, could those rounded cheeks really belong to Michael?

In that moment, every guilty thought—every moment of self-loathing I've experienced as I've packed on weight in the last few years—melted away.

Here was a once-in-a-generation, world-class athlete, a man who can afford personal trainers and personal chefs, a fierce competitor renowned for his drive and focus...and despite all of this, even he has succumbed to the softening that often accompanies middle age. How could I, a middle-class, thirty-something, suburban housewife, with ALS, expect to do better?

I hope I don't sound mean. I take no pleasure in Michael's apparent weight gain. But I do take solace in it. If he is having trouble staying fit in his retirement, how can I be hard on myself when I'm struggling to stand for the length of my shower—much less complete a full cardio workout regimen?

Feeling cheered, I put the newspaper aside, determined to cut myself some slack. Determined to stick my tongue out at my healthy self when she flaunts her fit and saucy self in the photos that line our bookshelf. Determined to put away the Queen CD, vowing not to taunt myself with "Fat-Bottomed Girls" ever again. (Okay, I'm kidding about that, although I do often hear that tune in my head when I look in the mirror.) 

But, in the days that followed, I found myself thinking of His Airness again and again. Thinking not of how his weight gain absolved me of my guilt, but of how if he set his mind to it, he could be back in shape in no time. Thinking of how, in relative terms, it would be pretty easy for him. 

And my own competitive nature kicked in. Sure, it would be pretty easy for him, and it would not be easy for me. But somehow, that makes the challenge even more attractive. I mean, how cool would it be to get fit in spite of ALS, and to do it before Michael Jordan regains his form? To not just "be like Mike." To be better than Mike.

Okay, I realize that's not realistic. I realize Michael Jordan is Michael Jordan, and I am...well, me. 

But something clicked in me, something that has been missing in the years since my diagnosis. That image of Michael Jordan has kick-started my motivation and resolve. 

It has led me to strap on my ugly sandals from last year's Walk4Life, to don lightweight shorts for easier movement, to clip back my hair, to take a deep breath, and to climb onto the treadmill. 

I honestly don't know where it will lead. But what I do know is that I already feel more confident and more upbeat than I have in ages. That regardless of how I look on the outside, I must be doing some good on the inside. And that once again, I am showing my kids the resilience, the spark, the determination I want them to see in me. 

Thanks, Mike.

First, An Apology

Where do I begin?

First, an apology: I'm sooo sorry I have been absent from the website for months. I'd love to be able to offer some fantastic excuse, complete with a Voldemort-ian villain, a mind-numbing battle sequence, and a gripping love story, but the truth is decidedly more mundane.

I just couldn't keep up. I'm sorry. I feel terrible about it. Whatever you think about my lameness, rest assured I've thought 100 times worse things about myself.

Every day I feel as if I fall farther and farther behind in life, but never do I feel it more acutely than during the last quarter of the year.

Starting with two kids' birthdays in October and running right through the holidays into the beginning of the year, I can't seem to catch my breath. Baking  birthday cookies, wrapping gifts, baking birthday cakes, planning and executing parties, costume shopping, decorating for Halloween, school parties, undecorating for Halloween, fighting the colds and flus that make the rounds of the household, decorating for Christmas, holiday shopping, tree shopping, tree trimming, holidays parties, wrapping presents, baking cookies, baking more cookies, baking even more cookies, getting ready for houseguests, and trying to make everything come together in time for Christmas...it's a mind-boggling juggling act with which many parents are all too familiar. Throw in the usual homework battles, band and gymnastics and other activities, meals (those darn kids ask for food every day!), housework (ha!)...it's just more than I can handle. And to be perfectly honest, I had trouble managing it all when I was able-bodied.

But now that every task takes me 85 times longer to do...well, forget it. It's just inevitable that things fall through the cracks. There are not enough waking hours to squeeze it all in, and for anyone other than Jack Bauer, it's just not possible to keep going 24 hours a day. I already push myself and end up staying up far beyond what I know Dr. Siddique would recommend. 

But for as long as possible, I want to keep doing all the projects I've always done to make birthdays and Christmas special for my family. And there are some activities--like homework and meals--that are nonnegotiable. So, despite all of my good intentions of raising awareness and advocating for ALS, the website falls to the bottom of the list and settles there.

And now, here I am. Again, I'm sorry for the looong absence. I hope to get back in the swing of things and get back to more frequent updates. There are so many topics I wish I'd had time to write about over these last few months, and I'll try to go back and piece some of them together over the coming weeks.

In the meantime, I wish you a very belated "Happy Holidays," and I hope 2009 is off to a great start for you and yours.

Where Were You
Four Years Ago Today?

September 8, 2004:

I should have known this doctor’s resemblance to Quentin Tarantino was not a good omen.

I’m sitting in yet one more doctor’s office, waiting to hear whether this violent-film-director look-alike has any better idea what is happening to me than the any of the others have had.  It has been a long slog through more hospitals and doctors’ offices than I care to remember, and no one has been able to tell me why my voice is slurred or my right arm is weakening.

We can be thankful it’s not ALS, the first neurologist had said. I think back to that bright June day, when myasthenia gravis had been my tentative diagnosis. It made sense. I fit the demographic, had the family history. I’d witnessed firsthand the devastation it had wrought on my father.

But as much as the myasthenia gravis diagnosis had inspired dread, I’d been relieved it wasn’t ALS. I had convinced myself it was.

And as the days and weeks and months have gone by without a diagnosis, my suspicion has lingered.

How many times have I tortured myself with the ALS entry in the Mayo Clinic Family Health Book? Hasn’t its familiarity left my heart racing, my skin clammy, my mouth dry? I’ve slammed the book shut over and over, calming myself with that first neurologist’s words: We can be thankful it’s not ALS.

How many times has Jim counseled me to stop giving in to fear? No matter how often I work myself into a frenzy, he has patiently repeated those reassuring words: We can be thankful it's not ALS.

How many tests have I endured over 15 months, repeating that mantra as the worst possibilities flash through my mind? We can be thankful it’s not ALS.

Lying motionless for MRIs and CT scans. Wincing through the early EMGs. Later, sitting stoically as yet another needle was unceremoniously jammed through the underside of my chin into my tongue. Waiting for results minute by agonizing minute. We can be thankful it’s not ALS.

I have lain awake at night for hours, contemplating what no parent wants to contemplate. I’ve gone to sit on the edge of Nick’s bed, then Emily's bed, nuzzling their soft, round cheeks as my tightening throat threatens to cut off my breath. I’ve held a sleeping Zachary for hours and hours through the darkest stretch of the night, trying to stave off the dawn because if I could just make time stand still, the worst could not come.  I have sobbed uncontrollably.

And always, always I have fought my way back from my worst fears with that one simple declarative: We can be thankful it’s not ALS.

I cling to those words now as they reverberate in my head, and I suddenly realize the doctor is speaking.

“…motor neuron disease…” Tarantino continues.

Whoa. What is he saying?

 “…EMG shows denervation…”

We can be thankful it’s not ALS, the echo in my head interrupts.

I hesitate. Then, taking a deep breath before I lose my courage, I plunge ahead.  

“And by motor neuron disease, you mean ALS,” I venture, stating my question—my gravest fear—as fact. My calm, steady voice belies the panic gripping my heart.

We can be thankful it’s not ALS, the echo insists.

A brief silence.

“Yes.”

That’s it, then.

There’s nothing more to say. Tarantino squirms almost imperceptibly under my unflinching gaze. This scene is much too subdued for one of his films—no graphic violence, no gratuitous blood spurting and spewing and spattering the walls of the sterile exam room. Just bright lights. His white lab coat. An exam table. The standard stainless steel sink.

But it’s there in his eyes. A lethal menace. The foreshadowing of a gruesome death.

Fade to black. Roll the credits.

He blinks first, collecting his file off the desk and somberly making his way toward the door. He’s done the most distasteful part of his job, and he’s gone.

I imagine him shrugging off a heavy, black cloak as the door closes, as he tries to shake off the dismal reminder of the inevitability of death and its sometimes capricious nature.

What will he do the rest of the day? Will he think of me tomorrow? Next week? Ever? When his wife asks about his day, will he tell her he delivered a death sentence to a 35-year-old mother of three?

Well, at least he gets to leave.
 

Jim and I are left to process this stark new reality. I knew this. My damn gut instinct. I knew, knew, knew this. 

We can be thankful it’s not ALS. Right.

I am eerily calm. Composed. Detached. (Unhinged? Maybe.)

The silence is deafening, begging to be broken, begging for the first words A.D. (after diagnosis) to be spoken. I choose them carefully.

“See?” I say, giving Jim a weak smirk. “I’m always right.”

Three Little Words...

...you never want to hear at a visit to your ALS doctor:

"blah, blah, blah...rigor mortis...blah, blah, blah...plump...blah, blah, blah"

Bad News

Zacky and I are sharing a snuggly moment. He's nuzzling against my neck, and I'm kissing his hair.

"I just love you so much!" I blurt out.

"Okay, Mom," Zacky replies. "But just so you know...I'm a Cubs fan!"