The medical tally for 2011 includes two hospital stays, two blood transfusions, a cap on 18 months of chemo and countless Procrit and B12 shots. For three years, my Mother has been battling a chronic and rare blood disorder called Myleo Dysplastic Syndrome. For three years, my Father and I have been looking for answers.

We’ve met with oncologists, hematologists, neurologists, physical therapists, a few ER docs and countless nurses (many of who are real-life angels). They are positive and kind and gentle. But, they don’t have solutions.

I continue to believe there is an answer and we only need to connect with the right person. It’s this conviction that led us to our last appointment for 2011. Unlike any other doctor’s appointment, this was a late-night virtual visit with us in California and the doctor in New York.  The doctor hails for a leading medical cancer institute and is part of a growing legion of 2nd.MD docs, who provide medical consults via an online video chat (think Skype) or by telephone. 

The offer to consult with a 2nd.MD doc came at a great time.  My Mom hadn’t seen a good day in 6 months (maybe more).  Not a single good day.  And, despite our best efforts, we were nary closer to an answer or solution.    

As soon as the appointment began, we instantly jumped into questions – all business.  We drafted an agenda and detailed questions ahead of time. We reviewed notes from previous doctor visits and came prepared to take more notes.  No doubt it’s my own little coping mechanism.

For almost an hour, Dr. Cho of 2nd.MD answered rapid-fire questions, providing concrete answers. For the first time, he confirmed many of my Mom’s strangest symptoms are caused by the disease itself and not a secondary issue .  He recommended that we explore other therapies, including oxygen therapy (non-invasive and harmless). He told us to investigate a mutant gene. All this information was new to us. At one point, my Dad threw up his hands and rhetorically asked why no one had mentioned these things before.

Then, Dr. Cho did something that left me thunderstruck. I’m sure he sensed our exhaustion, and he implored us to continue to advocate for her care and comfort (not cure). He said how sorry he was that my Mom had this awful, non-curable disease. Whether he knew it or not, he gave me a gift. He gave me permission to push aside hopefulness and make room in my heart for acceptance.

It’s been about two weeks since our conversation and every day, I hear his words – “continue to advocate for her care and comfort.” Even without all the answers, this I can do.

****************************************************************

2nd.MD strives to correct a medical system that is “broken, expensive, inefficient and lacks love and beauty.” Hear! Hear! 2nd.MD provided me with a $200 stipend, which I applied to a consult with Dr. Cho to test-drive this new online medical service. Not only was our experience with Dr. Cho exceptional, my experience with the 2nd.MD team was top-notch. They are an amazing team and  I was overwhelmed by their compassion and dedication to connect me with Dr. Cho.  I was selected for this sponsorship by the Clever Girls Collective and all opinions are my own. #Clever2ndMD #spon

I hardly recognize myself these days.

Being an advocate for someone else who is weak means being strong. It means pursuing and pushing, even when every word is delivered with a shaky undertone. It means not giving up even when I’m pressed down by unimaginable excuses, irrational explanations or just plain ignorance. It means lifting my head up every morning from a pillow of unforgiving exhaustion.

Then, there’s the thinking exhaustion. Always – forever – trying to “think through the problem” to find the solution. There has to be a solution. I just need to find it. I can find it. I will find it.

Last month was a full-on battle. My mother hit a road block. She was feeling especially weak and yet, pulled herself together to go to physical therapy. For someone with a chronic illness, just brushing your hair and getting off the couch is a win. Making it to a physical therapy appointment is an all-out victory.

Upon arriving to the therapist’s office with her arm-in-arm, I learned this would be her last “approved” visit. We were un-phased by the news. She was headed to her oncologist the next morning and we were both confident that he would approve her for continued therapy. After all, she is skin and bones and unable to walk on her own most days without a steady arm to hold onto. Needless to say, physical therapy is the one and only thing she does in a week filled with doctors, tests and drugs that tangibly and positively affects her.

Apparently, we didn’t understand. Even if her doctor approved her for continued therapy, the therapist would deny the request. “It’s a fine line,” she explained. She told us that mom should continue on with her exercises at home or at a gym, “but not alone” – never without supervision. How about skilled supervision? Ah-hem … it’s called a physical therapist.

When I challenged her on this point, she said that we were welcome to come back and work with her privately. “Oh, I understand,” I said with unveiled sarcasm. “You’re willing to accept my mother as a private patient – paying cash – but unwilling to approve her care under her current insurance even with her oncologist’s approval as therapy that helps to sustain whatever miserably quality of life she’s been able to hold onto.” Her retort, “Like I said, it’s a fine line.”

As you can probably imagine … I didn’t stop. I challenged her on every sentence she delivered. I raised my voice. I didn’t care that who was there or who was listening. I matched her sing-song voice with defense and questions. Then, it happened. My mother started tearing up … a woman who almost only cries when she’s happy or moved – not sad or frustrated.

She was having an impossible time finding her words, but I waited. As did the therapist.

She said simply, “I can’t believe this.” I couldn’t either. It seemed counter intuitive to good health, but none of that mattered. So, today we start again. Her doing physical therapy from home on her own. My Dad and I, still looking for answers — for help. We have to. We’re her advocates.

The swarthy pirate had his eye on us and was moving in to sign the kids’ autograph books and pose for photos.  I was trying to quickly pay the breakfast bill while simultaneously grabbing for my camera and calming my daughter.  For all I knew, breakfast could have been $100.  And, it was – almost.

It turns out, per Disney, my 10 year old son is now an adult.  That means $25 for the Disney’s Character Breakfast, thank you, ma’am.  Seriously?  He still sleeps in Buzz Lightyear jammies and can’t wait for Santa to shimmy down the chimney.   He didn’t even get to be a teen yet – let alone the illustrious tween. 

The whole “your 10 year old son is considered an adult” caught us completely off guard and for the most part, we thought it was equal parts ridiculous and funny.   We teased him that he might want to start shaving and chided him about his life’s plan.   As we sat there enjoying Chip and Dale, Minnie and Tigger, it was as if time stood still.  I would have paid Disneyland another $100 to take it all back and declare my kid – “a kid!”

I couldn’t help but stare at my son clutching his autograph book and laughing at the character antics unfolding in front of us.  When I looked back at my husband, he was starring at me.  His caring, smiling eyes showed me he knew exactly how I felt.   If I hadn’t been in the happiest place on earth, I might have actually cried.  

As we said our last goodbyes to the characters and readied for a day of rides, my son quietly said, “I don’t want to be an adult.”  That makes two of us, kid!

It starts off simple enough. He arrives home with a new bit of learned information. “Guess what?” he asks. He’s studying a new science unit and is eager to tell me why/how come it’s warmer at the equator than the poles. The problem? His info is totally incorrect.

When I try and reason the point, providing factual evidence, he counters with the holy grail of all that is right: “Well, so-and-so told me it was true.” It is at this point that I typically lose it. We move from science lesson to character assault – mine – with me defending my own universal knowledge.

That was until two days ago when a long-time friend came to my defense (thank goodness for other mothers!). Her son asked, “Do you know where Noah’s Ark is?” As a matter of fact I did (thanks to the travel channel and years of Catholic instruction). After hearing my answer (based on current research), he turns to his Mom and directs her to “look it up on the Internet.” Are you kidding me?

Apparently, she too has an all-knowing 10YO boy. She emphatically tells him “No. She said it was Mount Ararat and I believe her over the Internet.” And, with that I wanted to add: “Yeah! In your face, kid.” (I assure you that I only smiled back politely, even if I was doing the happy dance in my head.) 

The truth is … one of the great benefits of having school-age children is that I get to learn many of the things that I didn’t learn the first time in school or have since, completely forgotten. As I get older, I am acutely aware of just how little I know, which became even more evident this month while reading the #1 bestseller, Cleopatra by Stacy Schiff.

It is indeed a masterpiece and worthy of its “bestseller” status, but it made me feel nothing close to an erudite. It’s the first book that I’ve read in years, where I’ve kept my dictionary at the ready to look up words like Hellenistic, suppliant, retinue, aesthete, and so many more. It’s been nothing short of a mental workout that makes me more than suited for a tete-a-tete take down with any 5th grader.

While ancient history is not my strong suit, Cleopatra has inspired me to organize a field trip to The Egyptian Rosicrucian Museum in San Jose.  Of course, I’ll dazzle the kids with my new-found Egyptian knowledge (sprinkled with a little power-to-the-woman lesson).  And, maybe, just maybe, I’ll overhear my son say, “Well, you know what my Mom told me?”

In Cleopatra: A Life, Stacy Schiff digs into the history books to share with us who the true Cleopatra was. As a member of From Left to Write book club, I received a copy of this book for review. You can read other members posts inspired by Cleopatra: A Life at From Left to Write.

That said, never again will I so casually leave without a few guiding words, such as …

Do NOT give away my ironing board (…to a blind woman).

Yes. You read that right. My husband gave our ironing board and an extra iron to my 94 year old, BLIND Grandmother whilst I was away. Let’s forget for just a moment that she’s BLIND. She lives in an assisted living residence and they DO her laundry. Another important tid-bit – everything she owns is a polyester blend. There are NO wrinkles. It’s scratchy thick polyester, for goodness sakes. Maybe, we should buy her some taper candles for mood lighting too.

My husband contends that my Grandmother only wanted to borrow the iron and ironing board. (Because everyone knows it’s totally okay to lend an elderly blind lady a hot – potentially flammable – object). Oh, he also noted that we can retrieve it at anytime. She may or may not use it, but one thing is for certain. She’s keeping it. I know because she told me so. Really.

It’s been four weeks since my trip and do you know that I’m still totally torched about my ironing board. Probably, because the only time I consider its whereabouts is at 6AM when I need it!

Just as I was about ready to light in to him again this morning, I thought better of it. I thought of my wonderfully successful and stress-free trip because he took care of the gang on the home front – including MY grandmother (which is no easy task). And because, really, the cost of an ironing board is totally worth four nights in a hotel room and countless meals – not one of which I cooked, cleaned or planned. Perspective is a good thing.

(That said, I’m not taking any chances. My next biz trip – I’m hiding the salad spinner.)

Me: “It’s a big metal chicken.”

Him:  “Huh? What! ? He’s not staying, right? And, if so, does he have to stay right there on the front porch?”

Me:  “Yes.  And, yes.”

My husband is wonderful.  He really does give me the benefit of the doubt and when he arrived home to see a gigantic metal chicken on our front porch, I’m sure he thought it was the work of my Mom.  (In my Mother’s defense, she has impeccable taste, but can go a little artsy on us.) 

That said, his patience started to wane when I explained that I did indeed purchase said chicken – exchanging real money for the large metal offering.  

Here’s the deal.  I blamed the chicken on a fellow blogger known as The Bloggess.  I explained that she’s wickedly funny and probably a little crazy.   Although, I couldn’t be certain about the crazy part because I don’t actually know her.

“Let me get this straight.  You bought the chicken because of some blogger-woman.”

“No,” I countered.  “I bought the chicken because it made me laugh out loud.”

(Gentle reader:  At this point, I’m implore you to go directly to TheBloggess and read, “This is why you should pick your battles.”  Do not drink or eat while you are reading; otherwise, you will choke on your laughter and I don’t want to be responsible for said disaster.  Okay, done?)

I know!  This post made me laugh for days. When my friend Kris arrived home from Dubai, the conversation turned to (of course!) the TheBloggess’ post on the big metal chicken.  Collectively, our lives are ridiculously difficult.  Gawd, we need an adventure.  A break.  Some fun.  We need a stinkin’ big metal chicken.

Fast forward three days.  I am now dashing through HomeGoods on a quick present-finding mission.  As I round the corner, there she was – a hunk of horrible ghastly metal with springy multi-colored feathers.  I stopped dead in my tracks and started cracking up.  It was a big metal chicken!  What do they say about sending out your heart’s desire into the universe?  Apparently, she was tuned in.  (Had I only known, I would have made a few other requests!  Alas, I digress … )

I began circling the end cap where the big metal chicken was perched — along with a couple of her comrades (a medium sized chicken and a big metal boar).  I had to take a picture of feathers and send it to Kris.  At this point, other customers began giving me a sideways look.  It’s not every day that you see a seemingly normal woman taking photos of a metal chicken from a variety of angles.

Then, I did the unthinkable.  I loaded the hunk of metal into a cart, paid for the sucker (yes – real money) and brought it home.  And, before I could arrive home with my master piece, Kris has returned my text with a name for feathers:  Bok Bok Choy.   Winner, winner chicken dinner!  Just kidding, feathers.   That said, you might want to watch out for my husband. 

His latest jab after accepting that Bok Bok Choy was, indeed, our newest resident:  “I’m sure it must have some scrap-metal value.”  Then, as if he’s finally discovered a legitimate redeeming quality, he said it again – this time disdain replaced with enthusiasm, “I bet it really does have some scrap metal value.  How much did you pay for that thing again?”  Money is no object, dear …

I can see it perfectly from my office desk and on more than one occasion, chocked on my morning mocha having forgotten that feathers stood outside.  Bok Bok Choy is my everyday, in-your-face-reminder to just laugh out loud, uncontrollably and for no reason in particular.  God bless you, Bloggess.   One metal chicken = $86.60.  Laughing out loud = priceless.

(Note:  My husband just informed me that said chicken is actually a rooster.  Whatever…she’ll always be a big metal chicken to me.)

Then, two weeks ago, I began reading The Sorcerer’s Stone to my 6YO daughter at bedtime.  She’s half interested, but I’m thrilled to have another go at the great H.P.  When I come to the end of the second chapter, I tell my daughter that we’re done for the night.  It’s then that the magic happened. 

My son – from the OTHER room – chimes in to ask a question about the story.  He’s been secretly listening to the story from the other room. The next night, he makes his way into my daughter’s room (which of course, results in a bedtime brawl).   By the third night, I’m thinking ahead.  We’re now cozied up in MY king size bed reading Harry Potter.  My son is mesmerized. My daughter falls asleep. 

As I’m closing the book, I feel a gentle tug.  “Can I read?”  With that he takes the book back to his bedroom and finishes it by the next morning. He’s now on book 3 and I’m still making my way through book 1 with kid #2. 

The truth … I’m enjoying the story of Hogwarts and wizards far more than kid #2.  Case and point – I read until she nods off and then, continue reading ahead.  I just can’t stop myself.  I suspect because I’m so excited and because the Harry hype has hit a crescendo this last month – she continues to let me choose the book each night.  I think she feels like she’s part of some secret big kid club.

For the last year, I’ve been mixing in chapter books with picture books for kid #2.  At times (like this time!), I get a little ahead of myself.  So, yesterday, I walked over to her shelf and pulled out several new picture books – The Costume Trunk, Zoo Borns and Todd Parr’s newest read, The I’M NOT SCARED Book.  We laid on her bed.  She read.  I read.  I gushed as she struggled to sound out new words and successfully read new stories.  We stopped at each page and marveled at the illustrations.

I take it back.  Reading isn’t magic. It’s miraculous. 

 This post was inspired by The Costume Trunk, where Courtney and her friends discovers the magical world of Paddywhack Lane.  A complimentary copy of this book was provided to me by the publisher, and this is the July pick for the From Left to Write Book Club.  

Not only do I have a fancy new blog, but I also changed the name from “ReadOutLoud” to “Alas, I Digress.”  We’re growing into a family of readers and alas, my days of reading out loud are quietly coming to an end.  My life, however, is anything but quiet and proved the inspriration to my new blog name, which could have easily been “Out-of-Order Order” or “Sh%T My Kids Say” or simply, “Really? C’mon On!”

You get it – you’re living it too.  Thanks for sharing this blogging journey with me and stop by some of my favorite fellow bloggers to check out the best in tech (CoolMomTech) or for a roaring laugh (TheBloggess) or for inspired good eats (Canning with Kids) or for simply one of the best darn blogs out there (Rage Against the Minivan).

Over-n-out,
M.

She was pulling out one dress after another from a bulging closet. I was providing fashion op-ed.

“No. Not that one,” I’d say. “Oh, yeah. I like that one. Plus, you can wash, line dry and wear that dress the next day.” Here I am gushing practicality, when really all she needs is a sexy frock because last I checked, they do have laundry service in Italy. My sense of self really started to unravel when she pulled out a flat (A FLAT!) of designer shoes hiding beneath her bed.

“My God! When did this happen?” Before, she could answer, I continue on a tirade that went something like this. “Those are Jimmy Choos and you don’t have one pair – you have several. And, what are those?”

“THOSE,” she replied, “are my gateway shoes. Ferragamos.” A gateway shoe? “You know. Pot is considered the gateway drug. Ferragamos are what I call my gateway shoes.” I lamely reply, “Those are cuuuuttte,” which I’m sure it is a fashion injustice of epic proportion. She lets me slide because she’s now pulling out each pair of shoes and telling me the back story.

I’m not listening. I’m now calculating her shoe investment when I realize that each pair is in p-e-r-f-e-c-t condition. Perfectly positioned and perfectly organized and perfectly packaged.

Mind you, this is the girl whose college bedroom was in constant state of disaster and proved rich fodder for many of my photos essays. While her housekeeping skills haven’t changed over the last 20 years, her panache for some sexy, well-heeled … well, heels has evolved.

The next logical question (of course): “Who gets your shoes if you perish in Italy?” She rattles off a few names, to which I make a mental note. We do this kind of crazy stuff for one another. I’ve given her orders on how I want my kids raised if I kick it and specific secret instructions (just in case). I thought the least I could do was get her shoes to the right woman.

At that moment, I realize that our lives couldn’t be more different. She’s single, no kids. For goodness sakes, she doesn’t even own a kitchen table. For some reason, this gives me heart palpitations since my life literally revolves around the kitchen table by way of food, homework and heart-to-hearts.

Seemingly, we have so little in common. Yet, we know every detail of each other lives. And, every once in a while, we get to slip away sans family and work and commitments and just be two friends sisters surrounded by a sea of really rad shoes talking about Ferragamos and Florence over lemon drops.