Walk this way!

Luna walks with her Bebe.







On September 11th, while the country marked the eight year since the world trade attacks, Luna blissfully ignorant of the somber mood around her, toddled happily into her 18 month. Just two days before she turned 1 1/2, she took her very first step. A week and half later she was walking across the room with her arms straight out reaching for her daddy, while making a very good Frankenstein impersonation.

18 months is indeed considered a late walker. When Sienna wasn't walking at 16 months I not-so-casually called up all the Grandparents to inquire when Paul and I walked, and while we're on the topic, when did they walk, and Paul's brothers? It turns out we are a family of late walkers. Perhaps we're all too content to sit and read our books. I had known all along that I didn't walk until the Christmas after I turned one. My birthday is mid-July, so it wasn't till the calendar, dog-eared with pages falling down, and on it's last leg, did I decide to get off my own diapered butt.

Interestingly, the Architect, also a July baby, was the latest walker in his family of three boys. Nonetheless, when Sienna wasn't walking at 15 months, then 16, my stomach would drop every time I entered a situation where her lack of vertical stature became the topic du jour.

So, when Luna wasn't walking at 15 months, I really wasn't too concerned. Though I must admit, as she neared the end of her 17th month I was starting to worry. No one likes their kid to be the last, ya know? The Sunday of Labor Day weekend, and the first full weekend in our new house, we had some friends over for classic New England day of apple picking. After the kids filled their pecks, we came back to the house. The music bopping in the background was just the beat Luna needed to get into the groove. She stood up, and while shaking her arms to the music she took two steps forward. By the following week she was walking across the room.

Funny how in 10 years no one will ever remember who walked when (except, of course the Grandparents). But for now, it must be marked, Luna, special Lu who was supposed to be delayed developmentally, who at 6 months-such a crucial age of progress-was laid-up with open heart surgery-is the Luna who walked not so very much later than her older sister.

What's in a bowl of stupid?

Yesterday I attended President Obama's speach on health care reform at the Portsmouth High School Gymnasium. My friend Jen, graciously shared her pair of tickets with me. We, along with 2000 or so others, waited in line for two hours before we were admitted to the High School. (Obama was punctual and arrived just when he said...at right about 1pm).

In a word, he was electrifying. The event kicked off with the pledge of allegiance, the national prayer, and the national anthem sung by Portsmouth's own, Natalie Hazzard. The President was then introduced by a Portsmouth resident, Lori Hitchcock, who has been denied health insurance due to her health condition (a pre-existing condition, that being hepatitus C).

Finally the president arrived on stage. He gave brief-ish statement on heath care reform before turning the event over to us, where everyone was encouraged to raise their hands. Folks were literally handpicked by the president (he's often referred to as 'The Professor', and I could see why; at times it really did feel like you were sitting in a college lecture; the best kind of lecture too, where the rooms are packed, the professor is animated and challenging, and everyone eagerly waves their hands hoping they get picked next).

Obama went on to clear-up virtually every myth out there from the rumor on death panels (no Obama won't pull the plug on dear ole grannie), to his alleged hit-list-my personal favorite-which is a list of names he's collecting by email of those who don't agree with him, and rationed care (for some reason those who oppose HCR think that the government will 'ration' care, when right now, your private insurance company is probably rationing your coverage now. If you need more explanation, click here, my last post illustrates how this is happening to my family now).

While inside the mood was oozing with love and good cheer, outside the picketers were unruly, and just downright ugly. The contrast between those who support healthcare reform and those who oppose it couldn't have been more stark.

PS: See if you can find the picketer with the gun. Scary stuff!

The High Cost of a Heart Kid

It's 3am and I am awake. Luna woke for a rare middle of the night milk nightcap and instead of changing her diaper and filling her bottle and then slipping right back into the dream where I left off, I lay awake thinking about...medical bills.

When the Architect and I first learned of Luna's condition, when I was 20 weeks pregnant, the first thing he blurted out was, "we can't afford this!" Or maybe it was, "this will kill us financially". Either way, I winced at his brashness, but deep down inside I knew what he was thinking. We had just finished watching Michael Moore's SICKO and the Architect was terrified. The movie depicted an older couple, both man and woman had suffered cancers. They regained their health, but lost the roof over their head to medical bills.

Now that Luna is 16 months, the reality of having a special medical needs child is sinking in. For the first year of her life, we geared up emotionally to get her through her two heart surgeries and two catheters, and countless testing, shots and doctors visits in between.

Modern medical science of today is amazing. Luna lives a normal toddler life.

But it's the insurance issues (the Architect and I simply refer to it as the Insurance BS) that haunts you and hangs over you for as long as the mind can imagine.

It's not that we don't have health insurance. We do. We have Anthem, and our policy is a HSA. Basically, once we hit a five thousand out of pocket, Anthem pays 100% of all medical bills.

Ha-ha, not so fast.

Most Americans I know have had a good round or two of back and forth over a erroneous medical bill. It's pretty much the status-quo. It's part of the system. Confusing consumers of what has been paid, and what is owed. Usually there is some bogus code that is attached to all of this.... "but what does A9067BS refer to on my bill?? my child did not have a cat scan on March 13th, it was an echo cardiogram!?"

This year alone Luna has cost Anthem nearly 80K. We diligently pay, or the Architect, through his work, pays the out of pocket $800/month for the policy. We then are responsible for the 5K out of pocket, above and beyond the monthly premium, which we have also paid back in February. The Architect's place of work contributes 25% to the policy and then $1500 to the HSA account. And I should note, and this is just an observation; but our insurance went up substantially the year after Luna was born. The Architect's place of vocation couldn't afford the HMO policies for its employees. My guess our family and the family with the child with Leukemia blew the 2009 premiums right out of the water. The pool was too small to sustain the risk. Perhaps I sound bitter, but business terms like 'risk and profit pool' should not be used when referring to children with cancer and serious heart issues. But naturally we can't blame any place of employment for seeking out the least expensive insurance for their employees.

But Anthem doesn't stop there. Every week we are bombarded by medical statements. An HSA statement arrives stating what Anthem has paid out and what we have paid out. Often two statements will arrive in one envelope, stating two different things. The Architect and I pass the statement back and forth, each trying to decode the convoluted bills.

The last series of statement to land in our mailbox have been surprisingly consistent. For Luna's last catheter, we are responsible for $6700.

Did I mention already that we hit our out of pocket max of $5000 and we pay $800 a month for the policy? We fulfilled our end of the bargain, now its Anthem's turn.

So, the games begin. And actually have been for a while. Behind me, on the window is a stack of bills. Smaller bills in comparison, one for $72 another for $616, both bills from the hospitals themselves. Various balances that through "code error" (read complete BS and a practice I have since learned from industry insiders that is used often to confuse consumers), and more importantly, neither are for services that Luna actually endured. They are, in short, bogus claims that we're now responsible for. (and as of this reading, I returned home today, before publishing post to find the $616 bill has gone into collections-this is for a cat scan, a procedure that Luna did not in fact receive!)

I've given up making phone calls as its only an exercise in tail chasing consisting of hours and hours of wasted time, where everyone will be pulled in the mix, including Luna's two cardiologists and the catheter doctor, trying to decipher what a certain charge is for. Rounds of emails and phone calls will be made; to the hospital to Anthem, to the doctors themselves. Each time you're convinced that you've finally made some head way and you won't see the bill again. And then each month the same bill, arrives in the mail.

I think to myself we simply won't pay the $6700. But then worry come January of 2010 will our family have health coverage.

Meanwhile the media buzz has been all about Obama's healthcare reform. Tonight he held a press conference on the very topic. I receive endless tweets to share my story, but wonder where to begin. The opponents views bubble-up through social media in vicious statements and articles to block universal healthcare and I'm reminded of the bumper sticker, Republicans solution to the healthcare crisis: don't get sick! I can't bring myself to even follow what's going on. It's too close to home. All I know is health care is one scary mess.

Summer At Last

Summer finally decided to make an appearance here in New England. According to Sam Champion, the weather anchor on Good Morning America, Boston only saw 3 sunny days from May 1 through July 3rd. This is what our little city looked like in June. Not pretty. June, arguably the best month of the year, was replaced by March, a toss-up month, and one that occasionally can give you sunny skies with small bursts of spring, but more typically will rain, rain, and rain. The latter part of the month, when we did not see even a hint of sun for nearly 3 straight weeks, was the most difficult. Our house, with six large skylights and a footprint of not much more than 1100 sq feet illuminates even on the darkest winter day. But with the rain, sometimes a mere drizzle, and other times a driving persistent stream; the sky lights mocked us. Not for a minute, while we all hunkered down inside could you forget the weather outside. At one particular moment a cloud seemed to disintegrate just over our roof, dumping rain so hard onto the glass I worried about leakage. Sienna immediately burst into tears and plugged her ears, pleading with me to make it go away.

The mind can play tricks on you when you don't see the sun for 20 straight days. Some mornings we would wake to light grey skies and Sienna would remark, "Oh, it's sunny today!" It broke my heart, but then again, I too was beginning to forget what morning, noon and evening looked like. It was varying degrees of grey, every hour of every day, and as a result the girls bed time seemed to get pushed back later and later.

I wondered to myself how we could so successfully repair broken hearts and faulty arteries, yet there was no solution whatsoever to stopping rain.

During our unwelcome, and unusual rainy season, moods sank and completions ran sallow. Sienna worried me with her greenish complexion and dark circles under her eyes, and Luna's lips seemed a permanent shade of purple. (interestingly, Luna's lips will turn blue-ish purple in rainy, cool weather, yet when I check her sats I always get the same high 80's that I've been seeing with her all along).

Finally, just around the 4th of July, the stubborn 'low-pressure' system (a term that can now instill fear and loathing in many of us) pushed out to sea and we were greeted with sun and crisp-for-July air.

Sienna, my sensitive child, still seems off from the rain. At nearly 3 1/2, an age of unfettered energy, she complains a lot of being tired and I wonder if her vitamin D levels have depleted. Luna of course, in typical Luna fashion, never seemed the least bit fazed by the weather. Each morning we awoke to rain I would search in her for signs of discontent, but she gave me nothing. She continued right along with toddlerdom, practicing over and over getting in and out of Sienna's big-girl chair, and testing the limits of her new vertical status by creeping around and around the coffee table.

Finally, smack in the middle of July, life feels familiarly summer-ish again. In a few hours the house will be awake and bustling, and I'll run around grabbing towels, snacks and bathing suits for swim lessons.




Proud Luna with rain-induced purple lips.




The girls find ways to amuse themselves while trapped indoors.

An Event That Changed My Life

I participate in a writers workshop. I joined two summers ago. It's been the same core group-with some floating in and others floating out-long before I joined.

Every Monday morning we meet at Norm's house and sit at his dining room table which is a special round table that dates back to the beginning of the 20th century-and one that has etched names and drawings on the oak top. Legend has it was the round table to a progressive group of thespians who resided in Chicago over 100 years ago.

The table is magical and the stories that effuse out of us during our workshop seem channeled from it's creative soul.

Each Monday morning we are given a prompt. One cold February morning with nearly 3 feet of snow outside, we were given the prompt, "An event that changed my life". The passage below was my response:

After the news settled in and after I knew there was no way I could end-deliberately end-her life at just 21 weeks, a funny calm settled into me.

I've always welcomed change and yearned for adventure. It was all how you chose to look at it I thought. This too would be an adventure.

"Your child, the baby you're carrying...she has a very rare and serious heart defect."

The doctor continued in hushed tones. Speaking in a language that was completely foreign to me; pulmonary atresia, pulmonary stenosis, double outlet left ventrical, dextrocardia...

The risks and complications, however, were words I understood.

The diagnosis, spoken by a rather handsome Boston cardiologist sprayed my soul like shrapnel. Some pieces of the information settled deep within me. Still others bounced off. I imagined the phrases 'feeding tubes' 'heart transplant' and 'heart failure' laying on the ugly grey institutional carpet in the tiny consult room in the hospital.

Paul and I left Boston numb. Quietly, without speaking a word to each other we snaked through the Fenway traffic. The moon-huge and full-late October-a Harvest moon-beamed down on the Red Sox fans. Later, we would give that Harvest Moon to our baby in the form of a name. Luna, Goddess of the Moon.

The air was thick and warm. The city vibrated. Game 2 of the World Series, Boston vs. Colorado. I stared at the 20-somethings skipping and yelling in the streets. With my window open all the way, some of the revellers nearly brushed me as they skipped past the car, yet I felt a million miles away from it all. I was a tourist, riding a tram, viewing American History comfortably from the darkened museum-or so I felt at that moment.

"This baby will be the best thing that happens to us", I thought, as we pulled on to the express way.