The Beeps

The beeps haunt my dreams.  F-F-D-D-A.  The notes mechanical, the tones without reverb.

When I hear the familiar song from the mobile, I think it's Clair de Lune, I stop dead in my tracks.  I am paralyzed with fear, with the memories of what was and what wasn't.

For him, though, the beeps are the birds chirping.  The sound of crickets on a warm Autumn evening, when the windows are open to let the breeze in.  He hears doorbells and ice cream trucks.  He hears lullabies sung by big chested women with deep voices.

He doesn't realize that F-F-F meant his sensor had fallen off.  Or D-D meant warning.  Or a long A meant he wasn't breathing.

I can't tell him of their meaning because for him the dream of birds and ice cream and crickets is what kept him going, what kept him in the familiar, what sparked his imagination and perception of the real world. When he thinks upon those sounds, he has nothing but positive memories.

Whereas I have panic attacks and am gripped by fear. Fear of the unknown. Fear of what was and what could be again.

But that's the difference between him and me. He only knows forests of chirps and swaying branches, sticky sweet candy dreams, summer nights, and voices singing Debussy. And that's ok.

Because my reality, the reality of the beeps, is my horror. And should stay that way.

***************
This post was based on the book Room, by Emma Donoghue, which I received free from the publisher to participate in the From Left to Write book club.  The book should only be read by adults and is very dark.  Don't say I didn't warn you.

What It Costs to Keep Him Alive

Parents complain about a lot of things.
Price of diapers.  Price of formula.  Using formula versus breastmilk.  Price of toys.  Price of daycare.

And other parents complain about other things.
Medicaid is making our country poor.  Homosexual marriage is a crime.  Muslims are terrorists.

For the record, I don't believe any of the above things.  Muslims are good people (have you read my blog?), homosexual marriage is a modern concept we should appreciate, and by golly, Medicaid is the only way that The Great Potato stays alive.

This last one is what I want to address today.  I try to stay out of political issues on my blog, but this one has me fired up.

The hubs and I pay good money for the best PPO health care that our employer offers.  It costs about $400 a month.  We have a $500 deductible, which we reached within the first month of Potato's birth and subsequent hospitalizations.  So, for healthcare alone, in the 19 months he has been on this earth, we have spent $8,600 out of our own pocket for health care.

And we love BCBS.  They have taken great care of us.  They never question charges, they pretty much pay anything at any doctor.

But, because they are a PPO, we pay very high co-payments.

In the past 19 months, according to our tax documents, we have paid over $15,000 in hospital and doctor co-payments.  That's just co-payments.  $30 here, $20 there.  In 19 months.  Don't even get me started on the $4000 in prescriptions as well as the recent bill for home nursing.

But Potato requires more.  Potato requires a monthly supply of feeding bags, specialized formula, oxygen, and home nursing care.  This is above and beyond the cost of normal baby things: clothes, diapers, wipes, etc.

So here is a breakdown of the cost it takes to keep Potato alive for one year (minus doctors bills):

1 Can of Elecare (formula) = $33
He uses 26 cans a month = $858
For one year = $10296

Medical Supplies (oxygen rental and feeding supplies)
One month rental = $1000
For one year = $12,000

Home Nursing Care = $25/hr
8hrs a day / 4 days a week / one month = $3200
For one year = $38,400

Prevacid & Norvasc & Albuterol Prescriptions Out of Pocket = $60 + $20 + $300
Refill every month = $380 a month
For one year = $4560

So far, for non-hospital related expenses, we would be paying $65,256 a year just for the necessities to keep him alive.  Add in hospital expenses, doctor co-pays, and the like, we are looking at a total bill of $100,000 a year just in medical needs (again, not including diapers, onesies, developmental toys, baby food).

Here's the kicker though.  As hard as Hubs and I work, our salaries combined do not equal $100K. Which means that just working full time jobs, the both of us, wouldn't bring in enough money to cover the costs of Aidan's care.  Meaning, we would have to max out our credit cards, dip into our savings, and the like (been there, done that) to afford it.

Now, before you get your panties in a twist, this is not a "woe is me send me money" post.  The Hubs and I are in ok shape financially and can afford usually anything that comes our way!  Let me repeat that again.  WE CAN AFFORD IT.

Sure, we seldom go out to dinner/lunch/breakfast, hardly ever by clothes (yay for Mom's hand me downs), and have had 2 Christmases, birthdays, hanukkahs, mothers and fathers day, and anniversaries in a row where we haven't gifted each other (or Potato) anything. And we choose not to do these things because we have to save for the surgeries that cost a couple thou.  Or for Potato's schooling.  Because that's what it takes to survive.

You know what else it takes to survive?

MEDICAID.

Potato is the fortunate recipient of government assistance.  So on top of our expensive PPO, which covers most of his medical things, we also receive Medicaid which covers a majority of the rest (it does not cover his new doctor in Maryland, nor does it cover his medications). 

Medicaid gives us the nursing care, which makes it possible for me to work my butt off for a measly wage.  Medicaid covers the cost of his therapists, which come every week from the county to get him ready for school.  Medicaid covers his dentist bills.  Medicaid gives us the peace of mind that we can take care of our son in the best means possible.

For many against government assistance, their argument is that it is a hand out, not a hand up.  Well for us, for Potato, Medicaid pays for the tools necessary for us as a family to succeed.  It allows us to work and provide for our family while keeping Potato out of a slimy day care that can't attend to his feeding tube needs and gives him probably-fatal childhood illness.  It allows us to know that we can keep the medical team of doctors we have assembled to give Potato the best care.

And if that isn't a hand up, I don't know what is.

So, if you are my friend, and you comment on this post or anywhere that Medicaid is an evil program that needs abolished or that you hate paying out of your taxes for it or blah blah blah.....then you are essentially condemning Potato to death.  And you are no longer my friend.

Oh, and if you refuse to pay out of your taxes for government care of others that are disabled or need special care, then by all means, pay attention to the donate button at the top of the page.  I will make sure your hard-earned income goes to the right place.

For real though, the Paypal donation button at the top of the page goes directly into Potato's 529 savings plan.  Should you feel compelled to donate, Potato will use it for schooling when it comes time.

New Gig

Today, I'm starting my regular gig over at Active Woman Traveler.  I hope you will join me!

Why Travel Cures All

At one point in time, my family asked me why I felt called to live overseas, at least 5000 miles or more away from the only support system I have ever known.  It was and still is very hard to describe why I felt so called to travel...

Except for to say that it really cured me.

Prior to leaving for Jordan, the Hubs and I had serious marital problems.  I'm not talking the "oh we aren't speaking for the morning" kind, but more the "take a pillow and go sleep upstairs" kind.

And I don't know why I was so out of love for him except for the fact that there seemed to be a void in our marriage that I wanted to fill with what-ifs.

What if I had tried harder to stay together with that guy from college?  What if I had been able to hold on to my first love?  What if I was single so I could play the expansive field that was opening itself up to me?

We went to therapy, we talked it out.  It still didn't feel like the void had been filled.

Until it was wheels down in Jordan.

As we drove along the Desert Highway from the airport to our new home in the blackness of our new Middle Eastern nights, Hubs gently took my hand.  We were in this together, him and I.

Over the course of the 1.5 years we were there, we filled those voids with love.  Love of each other.  Love of exploring together.  Love of new experiences.  Love of pride for what the other had accomplished.  Love of work.  Love of friends.  Love of food (oh, the shawarma).

And now, looking back on that time which seems a distant memory, I long for that feeling again, even though our marriage is stronger now than it was before.

Travel is the lost love that I have been searching for, that one thing that ties all bonds, fills all voids, and lifts the spirit.

And for me, it's a love I never want to quit.


This post has been inspired by The Stuff That Never Happened by Maddie Dawson, which I received for free as a reviewing member of the From Left to Write Book Club.  The book tells the story of a woman so consumed by the failings in her marriage that she takes up with a past love.  I did not like the book.  However, I can totally relate to the plight of the main character.  Visit From Left to Write to see what others thought.

Hopeful Parents

Today, I am over at Hopeful Parents.

This is from the About Page:

Hopeful Parents is a place of common ground.

We'll introduce you to our diverse pool of talented, thoughtful writers who will share their stories, their feelings, their ups and their downs.

You'll meet parents raising children with physical, psychological, emotional, neurological, sensory, behavioral, social, genetic, and developmental disabilities. Some parents are single, some are married. Some grieve the loss of their child; some grieve the loss of their spouse.

You'll also meet healers -- the "medics" who help us through our run. People we can turn to in our pain; people who can help provide some relief.

These writers -- the parents, the healers -- remind us that we're all on this journey together. We don't have to go it alone.

And with that spirit of togetherness, I invite you to get involved with Hopeful Parents. An easy way to start is by commenting on the posts that move you. Then explore the sidebar. There are quite a few links with ways to participate. Please check them out.

Whatever you do, please join the community.

Joining costs nothing and will give you access to our online community. But that's not the only reason to join.

You should join because we -- parents who face increasing medical expenses, parents who often times face uphill battles with our schools, parents who feel the minority in broader social settings -- will have a louder, more powerful voice if all of us, regardless of diagnosis, could come together as one unit.

If every parent of a child with special needs were to join Hopeful Parents, imagine, for a moment, what we could do. Imagine banding together as a whole, collective voice to advocate for our children. Imagine a united assembly, strong in numbers, able to encourage more thoughtful leadership and policies so that we can better help ourselves, each other, our children, our communities, our nation and our world.

I'm glad they invited me to be a part!

I'm Taking a Potato Break

As you know, we moved.  To a house that is now 45 minutes away from work (as opposed to 10).

And I used to come home every day at 3pm and have plenty of time to cook dinner and blog before spending a few moments with Potato before it was off for an early bedtime.

Now, with the longer commute, I have a grand total of 15 minutes to spend with the Potato before I'm too tired to enjoy it. And the result is that The Great Potato no longer enjoys me, but searches and wants his father instead.

This is always the plight of the working mother, trying to balance work and life.

But there is something that I can control.  I can stop blogging.

It takes about an hour of every day just to respond to things, set up posts, think of what to say, attempt to be funny.  And that is an hour that I could be spending learning about and raising The Great Potato.

So, I've decided to take a break.

I'm not quitting or anything.  I can't leave it forever, because I love you, I love the community, and I love the writing. 

So I just won't be posting as often.  Maybe once a week instead of once a day.

HOWEVER...

I will be posting over at Potato's place because I owe it to him to keep his story going.  And as I have new opportunities to write and reach out, I will. 

Thanks for everything!

Getting Away for the Weekend: Picnicking By The Road

We arrived in Jordan at night on a flight from Paris.  We were tired, confused, incredibly jetlagged, and nervous. What would befall us in this crazy Middle Eastern land?

As we drove the long highway from the airport into Amman, wide-eyed and frightened, we couldn't help but notice fires burning openly along the side of the road.  What kind of ridiculous country had we dropped in to?  Open fires, burning tires, riots?  Our minds only jumped to the obvious conclusion.  We obviously were going to be attacked by terrorists wielding pitchforks and torches that would set fire to our village.

But then our driver pointed them out and said, "don't worry about the fires.  Those are just families picnicking."

...huh...

At closer inspection, we could make out mothers and fathers, kids, uncles, aunts.  The elderly and the young.  People cooking whole lambs and salads, appetizers and such on the side of the one main 6 lane highway in Jordan.

Apparently, the thing to do on a Saturday in Jordan was to take your family to the side of the highway, start up a fire, cook some meat, and enjoy each other's company.  Oh, and the diesel fumes from the trucks traversing the country. 

And it wasn't just the poorer families that practiced this tradition.  We saw just as many Range Rovers on the side of the road as beat-up jalopy trucks.  The rich picnics looked no different than the poor ones, although I am sure the quality of the campfire was greater with those who could afford more sticks.

We never really understood the draw of a highway-side meal. But, in some strange way, I am sad I never got to try it out.

I hear that there's an especially lovely stretch of I-95 between McDonaldses.  Anyone want to join me?  I'll bring the lamb.

The Burn Heard Round the World

My husband and I have different vacationing styles.  He prefers to do and I prefer to do not.  If given the choice between laying on the beach or going snorkeling, you better believe I've got a towel and a book.  And the hubby?  He's standing on the beach with goggles, scuba fins, and a snorkel, wondering why I'm all comfy on my beach chair instead of already in the water with him.

So when we went on our first real vacation together, our honeymoon, I had to make compromises.  Oh, who am I kidding, I had to make deals.

One deal:  I would get 6 hours of laying and reading by the pool time (while he went scuba diving) if I would take the rented convertible offroading with him.  Fine, I would bring a dust mask.  No worries.

Two deal: He would take me shopping in Lahaina if I would do a real authentic Luau with him.  No problem, I like food.

And last but not least deal: If I went horseback riding with him to the bottom of the volcano, he would pay for a couple's hot lava stone massage afterwards. 

I agreed.

The morning of the ride, we awoke early and dressed (as was recommended) for temperatures of 50-60.  So I was wearing jeans, a tank top with a hooded sweatshirt over top, and a hat.  I figured, if I got hot, I could take off the sweatshirt and tie it around my waist, but if it was indeed 50 degrees, as the brochure stated, I would be comfortably warm.

The brochure did not lie.  It was not only 50 degrees, but it was windy AND raining, with the skies horribly overcast and gray.  Compound that with getting paired with a horse that had recently been pastured ("on vacation" the ranch hand explained) and didn't want to move, I spent the whole four hourse with wet, cold, jeans, my sweatshirt hood pulled tightly around my face, trying to whack a horse that would have rather farted than moved (and fart he did) down into the mouth of a volcano and back up again.

Four hours later, the sun came out for a bit, so I removed my hood for the last 15 minutes or so of the ride.

Afterwards, we prepared to go to the Luau that night.  I had a beautiful Hawaiian dress I had picked up on the aforementioned shopping trip and we had the opportunity to take a nice afternoon nap after our long and tiring horse ride.

But when I woke up from my nap, I could tell something was wrong.

I felt like I had a fever.  My face was very very hot to the touch.  Was I sick?  Too many horse farts gave me some kind of Gassy Horse Flu?  I went in to the bathroom to fetch a cool washcloth when I saw it.

My swollen, red, blistery face.

Apparently for the 15 minutes that I had taken off of my hood, I had burned my face and the tiny wedge of chest/boob skin that was exposed by my fashionably unzipped hoodie something major.  I'm talking the worst degree burns I have ever had.  My face was so swollen that I looked Asian, with beautiful almond-shaped eyes made out of the skin blisters plaguing my face.

The worst part is that we had non-refundable reservations at this Luau.

I could tell from the moment we walked up to the restaurant that everyone was staring at my face.  I could hear tell-tale whispers of "ooh" and "ouch" from everyone we passed.  When the photographer passed by to take our romantic, on-the-beach, luau picture, I nearly cried. I begged him to be quick so I could sit back down again and go back to the safety of my food.

The next morning, prior to our agreed-upon hot stone massage, I bought a very, VERY, wide-brimmed hat which I wore every day after that.  Perhaps I had learned my lesson in sun protection, but more than that, I didn't have to show my poor red face to anyone for the rest of the trip!



This post was a response to Mama Kat's Writing Challenge this week: Describe a particularly bad burn.

I'm turning a shade of green

So we moved.

We bought our own little piece of heaven in the country, complete with hardwood floors, an electric fireplace, and tons of natural light.  And a community pool. So what if it's a "condo," so what if the dude downstairs can't keep his stupid labrador from barking at all hours of the night.  It's our new home.

And it's GREEN.

For those of you that really know me, you know that being green isn't necessarily my MO. Sure, I recycle a few cans, I try desperately to remember my reusable shopping bags when going to the grocery store. But I don't live green.

Except, now I do.

My lamps have energy efficient lightbulbs.

The power system has a usage monitor to keep everything efficient.

We have water-saving shower heads, faucets, and toilets. 

The air filtration system is high efficiency and does something with something that makes it cleaner.  Or something.

We hooked up our TV to our iGo Power Tower (aka the Vampire Slayer) that reduces vampire power to our various entertainment devices by 85%.  It's the world's greatest invention, well next to sliced bread that is.

But, I am still going to clean out my sink with bleach.  Sorry, I need to know the various germies that I am throwing down there are actually dead.  As in KOed, not just stunned and/or drunk on various fermented cooking products.

In honor of this move to a new green home, I am also doing a little re-inventing of my purpose in blogging.  I have some great opportunities for writing on the horizon, so I hope you will all stick with me!  I'm enjoying this ride.

Getting Away for the Weekend: Out of Africa, Part 2

The continuation of Saucy B's story.  Read Out of Africa, Part 1 here.

Being on a shoot for a TV commercial can be equal parts painfully boring and exciting.  There’s a lot waiting around while things are made just right, followed by short bursts of intense activity.  Thankfully, my colleagues and I had a driver at our disposal almost 24/7, so we were able to make the most of whatever down time there was before and during the shoot by taking quick excursions to some of South Africa’s attractions.

One of those jaunts involved an afternoon at Constantia Vineyard.  During a sumptuous lunch served on the patio of the vineyard’s restaurant, I learned two very important things about South African wine: one, it makes me British, since the words “bloody hell I’m drunk” came falling out of my mouth; and two, it also makes me melancholy.  I promised myself I would stick with Old Faithful, (vodka) for the rest of my trip.  One maudlin phone call to my family was enough! 

Another getaway entailed a visit Table Mountain.  You can hike (total craziness) or take a cable car to the top (much more my speed).  The view from the top is fantastic and I had the same sense of being in the presence of something awesome that I did when I visited the Grand Canyon.

While these experiences were amazing, there was no way I was leaving the continent without seeing a zebra or some other exotic animal.  I mean come on, I was in SOUTH AFRICA.

I’m happy to say that I did get to see a zebra and a whole lot more.  After we finished shooting, I had almost a full day to myself before I needed to depart for my flight home.  I was able to arrange for a half day safari at a game reserve. 

I do use the term safari loosely, since it’s not like I was hiding in the bush of Kruger Park hoping to see something with tusks.  It was more like a real life version of Jurassic Park, only without dinosaurs or Laura Dern.  Much like the movie, a group of us boarded a jeep and these huge gates opened into the game park. 

Make no mistake, this was no zoo either.  The only animals that were behind a fence were the lions, for rather obvious reasons.  Everything else, the rhinos that were scuffling with each other, and the rather pissed off looking Cape Buffalo that I’m convinced was ready to charge if we didn’t keep moving, were quite out in the open.  Bouncing along in the jeep with the breeze blowing and these majestic animals strolling by was an unforgettable experience.

 

So yes, I got to see my zebra, and just about every other animal that is indigenous to South Africa poop within several yards of me.

And that, as they say, is a wrap!