Unreasonable

I am a passionate person.  I say passionate because it sounds way better than "jerk face" or "crazy" or "bitchy".  As in: "I am not a crazy, jerk-faced bitch, I am just passionate! (damn it)".  I told someone the other day "I feel EVERYTHING".  There are worse issues to have.

So, when I woke up this morning and saw that the Blackhawks had won***, I was (unreasonably?) happy.  I mean, I know; it's just a game and in the grand scheme of things it means nothing; but living in Blackhawks country during the playoffs when your team is on fire is really, really fun.  Because I am such a sap and my heart is just millimeters beneath the surface, I get choked up seeing the buses pass by with "GO HAWKS" on their marquees.  I crank up the TV during the ridiculously loud National Anthem and cheer and whistle along.  I clap and yell at the refs and whoop and curse.  In those moments, I am one of the herd and I love it.  It is so unlike (most of) the rest of my life when I am in that weird 10% that goes against the grain of seemingly every situation.  

*** it ended at one a.m. after starting the THIRD overtime.  I get up early.  I stayed up for the first OT, then went to bed hoping for the best.

BLACKHAWKS WIN!

This morning I also found a prom invitation for my middle son.  My Charles got invited to...the "Special", district-wide prom.

I wanted to scream.  

After reading the handout that came along with the invite, I wanted to scream some more.  This is an actual excerpt:  We encourage the students to enter independently to make it as much like a REGULAR prom as possible (emphasis mine).

WHAT?!?  So...it's a prom but not a regular prom.  Ohkaaayyy...

I just don't get it.  Will someone please explain to me why my kid can't just go (or not go!) to the ACTUAL PROM like everyone else?  Seriously?!?!?  Why is this even a thing?  

Like most things like this, I am sure that it was started out of love and concern and wanting something nice for our (different) kids; but as with everything else, separate is NOT equal.  Separate classes are not equal.  Separate schools are not equal.  No matter how inclusive and welcoming you think your school is, these types of classes and events only shine a spotlight square on differences and it is not a flattering glow.  

Let's be real.  The prom is a rite of passage, but the event is not equal for everyone, anyway.  Not everyone has a date.  Not everyone can afford a tux rental or a $600 dress, hair stylist, manicure, pedicure, limousine and on and on.  Not everyone has a gaggle of friends to hang out with and eat dinner with and (ZOMG!!! iamsowasted) party with afterwards.  Not everyone wants to, either.  For some, it's too mainstream, too bourgeois, too everythingtheyhateabouthighschool, and that is fine.  Some of us went to our senior proms with boyfriends they should have broken up with months before so that they could dance with the ex-boyfriend they should have gone with, instead.  

I mean, I have heard.

So, here I am again, in that seeming minority of people that thinks these things are a horrible idea.  And I am sure to get crapped on for crapping on it.  Let's think about it this way, though.  Is a "whites only" prom a good idea?  Or is it totally backwards?  Seriously?  How about proms that keep out kids because of their sexual orientation?  Effing REALLY?!?  No?  Not a great idea, you say?  Yeah, this is the same.  It is EXACTLY THE SAME THING.  Many people just don't see it, yet.  Am I unreasonable?  Maybe.  Maybe I would have more friends if I just kept my mouth shut and went along to get along.  Maybe... and, maybe my middle son will go to his Junior or Senior prom and maybe he won't. 

Just like everyone else.

This is Nothing Important

My dear husband and I were talking about dream "visits" the other day.  If you have had them, you know the kind I mean.  If not, they are the kind of dreams that feel as if you have spent time with someone that you love that has passed on.  I feel lucky that I have them, even though they usually always make me cry upon waking.

Occasionally, I have "place visits" in my dreams and these make me cry, too; mostly because I am usually dreaming of some wonderful destination that I am longing to be in; Paris, the pyramids in Mexico, or my grandparents' old house that has long since been demolished and turned into two family homes.  If I could time travel, I would go back to the brick front steps of that house or to huge swing in the backyard just to have another conversation with them.  God, I miss them every day.

This morning, I had a visit of another sort.  I woke up suddenly to the sound of crashing from the living room.  Since I have cats and am used to being awoken thus, I just figured I would survey the damage when I was good and ready (it was not the Christmas tree as I had feared, only some heavy cookbooks).  I managed to fall back to sleep almost instantly and immediately fell into a luscious visit with a 6'4 WWE wrestler.  It was the kind of dream that made me feel like I needed a mental shower upon waking; or a long soak in a hot bath for real.  It was a very nice dream.  It was so nice, in fact, that it made me feel guilty enough that I needed to write up this post; as a kind of confession.

I know I can't control my subconscious.  My rich fantasy life is as deeply embedded in my DNA as graying, mousy brown hair, blue eyes and irrational guilt.  They are all parts of me that I am learning to embrace.

Whatever it means and however it makes me feel, it was nice to wake up with a smile on my face, for once, on an otherwise dreary Monday.  Now, if you don't mind, I am going back to bed.

Pancakes

It's a long weekend.  I love it when Sunday doesn't mean the weekend is coming to an end, it's only the middle.  Soak it up!  Do! Stuff!  I know what I will do (I think to myself), I will make delicious, cool looking pancakes that my whole family will adore so much, they will beg me to make them all the time and they will become the stuff of family legend.  They will be crying over my coffin thinking about how freaking ridiculously awesome these pancakes were.

Here is the actual recipe

(Don't they look great?!?  Not sure about the gummy worms, though, weird.)

I mentally pat myself on the back for being such a great mom as I stroll the market looking for the correct ingredients.  They don't carry an apple corer?  Oh well, I think...no matter.  I will just core these lovely Granny Smith apples by hand.  It should only take, what...30 minutes? (the real answer is:  infinity)

Two hours later, I have given up trying to make apple rings.  After nearly losing two fingers and ruining four apples, I have settled for making a small batch of apple rings and then, I will use the rest of the batter for apple pancakes...just dicing up the leftover apple and adding it to the batter.  

Not quite what I had in mind, but 120 minutes in, there is no way I am not making something on the griddle.

Oh crap.  The griddle is still on top of the fridge and needs to be cleaned.

After scrubbing the crap out of the non-stick (note:  foreshadowing) griddle, I finally start working on the batter.

I read the instructions on the side of the bag of gluten free pancake mix.  "How many eggs do I need?!?!? 5?!?!????!!!  What the hell, Pamela?!?!  Okay, I will use applesauce to make up the difference.  WHAT?!?!?!!!  How are we out of applesauce???!!???Okay, it's still fine, I will improvise.  Two eggs + Two tablespoons of Earth Balance + One cup of Almond Milk+ Whatever oil we have left = Five eggs, right?  Whatever."

The batter is finally prepared and the griddle is hot.  I place the apple rings on the griddle and begin to gently drizzle batter over them.

"What in the world?!?!?  There is no way to leave the middle circle open.  NO WAY.  Okay, that's fine.  They will be circles, not rings, but no less delicious or beautiful."

I am now sweating in my 100 degree kitchen and have gone partially deaf from the sound of the overhead exhaust fan as it labors fruitlessly to waft the smell of burnt batter away from the stove.

Brett comes in and asks if I can drive him to a friend's house.  I ask him very sweetly to wait until I am done making him THESE! DELICIOUS! PANCAKES! and turkey bacon and he backs slowly out of the room.  Smart child.

It as at about this moment that I try and turn the rings (now circles) over.  

If an appliance could laugh, this electric griddle would have.  Huge, loud, Teflon coated guffaws.  "Oh, you want to flip these pancakes?  These, right here?  No way in hell, lady.  Ha ha ha ha ha haaa."

Apple Ring Pancakes:  Nailed it!

I take a few belly breaths and count to five.  It is either that, or start dismantling the kitchen board by board.

I look over at the sad remains of the apple ring pancakes and decide to give in and just make pancakes with apple bits.  They are sure to be delicious, still, right?

I dollop the apple batter onto the comal (with about a half container of Earth Balance to ensure non-stickedness) and let go of the breath I have been holding in for the last two hours.

Danny comes in and takes one look at the griddle and almost starts laughing until he sees the flames shoot from my eyeballs.  Instead, he starts scraping the crap off of it, wondering out loud if the apples are still salvageable.

I start laughing...that maniacal laugh that you know is just one step below tears while wielding the spatula like a knife.

He backs away, nibbling on half burnt/half raw pancake batter and apple, swearing it is delicious.  This is an example of why we are still married.

In the end, I do manage to pull off some surprisingly good apple pancakes and turkey bacon, which only Brett and Danny wound up eating.  The other two rolled their eyes at me and reminded me why I never try and make breakfast in the first place.

Amy's Apple Pancakes

Prep Time:  Three hours

Crying Time:  Three hours (on and off)

Time Husband Spends Trying To Hold In Laughter:  Your entire marriage

Eating Time:  Three minutes

Cleaning Up Afterwards:  Ninety minutes

Yield:  12 Somewhat edible, very greasy pancakes

Sentimental Me

Maybe it's foolish.  I've been called worse things.  

It's easy to become sentimental as you get older, but I was born that way.  From as far back as I can remember, I saved little things.  I had a terrible time parting with anything someone I loved gave me, whether it was a plastic ring from a gumball machine or a stuffed animal or a birthday card.  

When my Mom, or grandma, or grandpa would kiss my cheek, I would be careful not to rub it and could feel it, lingering there, for a long time afterwards.  

The one and only year I went to camp, the girls in my cabin were mean and clique-y.  Though I felt a bit lonely, the fact that they weren't nice to me didn't bother me as much as the fact that they wrecked the bed that my mom so nicely made for me before she left.  All those thoughtful, tight tucks, undone in a fit of eleven year old menace.  

If you look in my purse, I know you will find at least one old shopping list written by my Mom and a note about my worn out tires from my Dad.  In the kitchen drawer, notes from my Dear Husband about slippery roads, hot coffee and cats.  On the top shelf of the closet, nearly every drawing, project and card ever made by my children and birthday cards from relatives dating back to the 70's.

My father's mother passed away last April, but her voice is still on my answering machine.  I'd still have my other grandmother's voice as well, but her last message to me got erased.  Believe me when I say it really bothers me that it's gone.  I also had my youngest son's voice on there, from the day he first rode his bike (alone!) to a friend's house.  He called as soon as he got there.  "Hi Mom.  Well, I just wanted to call and say that I made it and I'm fine.  Well, see you later.".  You see, I have it memorized, even though it too got erased when we had to get a new phone.  

Books and clothes and televisions and cars and other things, I have no problem giving away.  I don't get attached to big things; not really.  I'd rather someone else have them, if they can be useful to them.  Over the years, I've managed to pare down the sky high pile of letters and cards to a more manageable amount, as well.  Now, instead of every birthday card my great grandmother ever sent me, I only have one; but I won't part with it.  

I still have my favorite childhood stuffed animals and every silly letter my husband wrote to me when we were apart for four months the year we got engaged.

I worry that I haven't taken enough pictures, spent enough time, taught my children all the things they need to know from their mom.  I worry that they'll grow up and leave and I worry that they won't.

I want to take all these things; the papers, the pictures, the voices and the worries and lock them away in a time capsule.  I want to cement them into the cornerstone of my life; knowing that these things are only a small representation of what really matters.

Here and now, what I have shared, what I remember, who I have loved, who knows that I love them; those are the real things worth keeping.

Hard to Find the Words

You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about.  Today, I am having trouble.

I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had.  I might never get to that point.  I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.

Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome.  I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.  

I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered.  The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons.  I can understand needing a place to work through their feelings.

I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis.  I'm just acknowledging that it happens.  I don't wish to drag these women through the mud.  There are so many complex issues to the dilemma that factor in:  Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it.  I really do.

That a woman might make this decision at all is not what bothered me.  At least, that's only a small part of it.  It does bother me because I take it as a reflection of how people feel about my living, breathing kid.  I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her.  It isn't about me and I don't wish to make it about me.  It's just hard to separate, sometimes.  Her body, her decision.  I understand and agree that this is the way it should and must be.

What really bothered me was reading how some of these "procedures" take place.  I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies.  Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms.  Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.

It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process.  They talked about being sad over their "lost" babies.

This was where I began to lose it.


I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive.  Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?  

I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.

I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.  

I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision.  I completely understand this logic if a fetus' condition is incompatible with life.  There are plenty of complications that fall into this category, but Down syndrome is not one of them.  Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long.  But most of these issues are correctable.  With intervention, the vast majority of babies born with T-21 will not just live, but thrive.

There is also plenty of debate about how much intervention is too much and I completely understand it.  I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator.  Some were three and four months old.  It is worth noting that none of them had Down syndrome.  One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born.  It was truly the saddest baby smile I have ever witnessed.  I want to cry thinking about it now, even fourteen years later.  I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles.  Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.

I often wonder what happened to him.  

All this begs the question:  At what point does it become worth the fight?  Understandably, it is different for everyone.  I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair.  I think about the people I know who are dependent on various interventions to live.  I wonder at what point they would feel like their lives were not worth living.  Mostly, I see people who are at peace with their circumstances.  Whether you want these circumstances for yourself or your child is mostly irrelevant.  Most of us will never know what it feels like to be in those shoes.

So, what of these parents who decide to let their children go?  At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred.  How DARE they write about how sad they were!!!  THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!!  FUCK THEIR SADNESS!!!  

Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me.  It felt like killing.  I began questioning my own pro-choice views.  I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat.  I have always found late term abortions troubling, but conceded that they needed to be legal.  I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe.  Yes, it's an option, but not one that I would want forced on anyone.  There are plenty of kids languishing in the system, already.

In the spirit of full disclosure, I had an abortion myself, in my early twenties.  I don't regret it and I don't feel guilty about it.  The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy.  I might have married that other guy.  In my view, I saved the beautiful family I have now by sacrificing those cells years ago.  Maybe you will call me a hypocrite.  Who am I to judge anyone?  I also have the benefit of hindsight working for me.  Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury.  All they can see is NOW and the future is a scary unknown.  I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions.  It's not my place to judge or question them.  I can only speak about my own feelings.

I don't know where to draw the line for anyone else.  It's not my right to draw that line.  All I know is that I am troubled by this discovery.  I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings.  Hindsight might give us blinders.

I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life.  She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did.  Again, hindsight in action.  Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.

So, what is the difference?  You might be wondering.  The difference is that my kid and kids like him don't suffer from Down syndrome.  They are living and thriving into their 50's, 60's and 70's.  And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes.  And I am trying, mightily, to put myself in yours.  I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.

I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement.  I believe in choice.  I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.

You Really Like Me!

My friend, over at Kimchi Latkes has been kind enough to send me a blogger award.  I really don't know what this means, other than she received some (well deserved) from other bloggers and decided to pass one on to me.  I might be happier about it if there was some kind of cash prize involved, but I am thrilled, nonetheless.  

As part of the award, you apparently have to answer a few questions about yourself that the nominating blogger poses.  Again, I really haven't got a clue about all this, but here are my answers to the questions posed by Kimchi:

1. If you could bring only three food items to a desert island, what would they be?  (Don’t worry about survival or nutrition here, I want to know what three things you’d be content eating over and over for the rest of your life.)

Having just written a post about eating more healthily, I think that being content and nutrition go hand in hand.  That said, my items are pretty healthy and I could be happy living on them, if not for the rest of my life, at least for a long weekend.  Anyway, I would pick pistachios, olives and bananas.

2. If you were attacked by a vampire and they offered to turn you into one, would you accept?  Explain.

Oh, the can of worms this question opens up!  I have mentioned vampires quite a bit in my writing.  I don't mean icky, totally boring Twilight type vampires, though.  I mean, super hot and sexy vampires; the way they are meant to be.  If one of these super hot and sexy vampires offered to bite me, I would not hesitate.  This probably would not be adultery, since I have a sneaking suspicion that my smoking hot husband is going to come out as a vampire any day now.

3. Time travel to any point in Earth’s history, and any location.  Where would you go, and why?

Good one.  I think I would like to go back to 1911 and see Machu Picchu when it was first seen by outsiders.  I've always wanted to go there and the idea of seeing such a magical place before most anyone else is pretty appealing.  Plus, Absinthe.  I would stock up.  

4. What is your favorite children’s book/fairy tale/folk tale?

I love anything to do with Santa Claus.  Who is cooler than a guy who flies around the world in one night in order to make kids happy?  No one, that's who.

5. Ocean or mountain vacation?

Can't I have both?  I spend lots of vacation time in the Adirondacks of New York and love that, but when I think about dream vacations, they usually include some kind of exotic, beach locale.  Think me and my husband on a lonely Greek island.  Ocean.

6. Describe the best thing that has ever happened to you.

I think the best thing that ever happened, was the thing that lead to all the other "best things" in my life.  It was meeting my husband while we worked together in Los Angeles in 1992.  All the best stuff came after.

Whew!  That was fun!  :)  

I USED to be Hot, Damnit!

My husband is really good looking.  He's got this very potent Apache Indian/Mexican/tiny bit European thing happening and apparently, he got all the best traits of each.

When we first got together, a million years and three children ago, we were fairly compatible on the looks scale.  Because we lived in L.A. at the time, neither one of us was up for any modeling jobs (see my explanation of L.A. hotness math right here), but we were doing okay, even though I felt kind of chunky at the time.

Just kids, ages 28 and 23.

***note*** 

Chunky is a relative term.  At this point, I would probably, willingly give up an appendage to be 1993 chunky.  My DH would not need to do this since he is the exact same weight he was in 1993.  So, so unfair.

Twenty years later

Okay, well, he's doing a kind of squinty thing in this, more recent picture, but otherwise, he looks basically the same.

He's still got the same jawline and adorable dimples and clear skin and...he's just still super handsome.

I, on the other hand, am not feeling quite so adorable.  Twice in the last two weeks, I have seen young women check my husband out, look at me, then back at him.  I know what they are thinking.  They are doing the math and according to their version of hotness math, we don't add up. I've seen plenty of younger girls check my husband out over the years, but it's only recently that I have noticed this phenomenon.  

It makes me happy that he still turns heads.  

It makes me wish that I still did.

It makes me feel pretty terrible about myself.

It's typical in these instances that I want to pull out an old picture of myself and scream "I USED TO BE HOT!!!" at the offenders.

Actual abs

But, I don't and they wouldn't care, anyway.  They would just shake their young, pH balanced hair in pity at the crazy, chunky, middle aged mom and her obviously vision impaired mate.

They don't get us.

They don't realize what we have have been through or what drew us together or what still keeps us going.  They don't wonder what makes him ageless (is it his genes or is he a vampire?), they just see that he looks good.

His tiny facial crinkles add character.  

My wrinkles add years.

His bald head looks intentional.

My short hair looks like I gave up.

It is disconcerting when these looks occur after I have actually given thought to my appearance.  It hurts my feelings to have chosen an outfit specifically because it made me feel pretty good, only to have someone look me over and wonder what I was thinking.

And it probably shouldn't matter to me.  After all, I HAVE the hot guy and unless I am terribly mistaken, he isn't going anywhere.  Those young things barely register to him and if he even notices, it's for a second.  He has never made me feel less than beautiful and young and desirable.  

It's not these young girls that are the problem.  It's the fact that I care at all.

The treadmill is calling my name.

Heart Tale

In 1998, when our oldest son turned two, my husband and I started thinking that it would be nice to have another child.  Suddenly, our baby was turning into a big boy and we were starting to miss that "new baby" smell.  

It was October when we found out we would be parents again.  We hoped for another boy to be best friends with our oldest.  

Months passed and my pregnancy was smooth.  In February, we went for an ultrasound.  The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound? 

We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather.  The alarm bells did not go off at all.  At the level two appointment, I had no fear until the technician left the room and came back in with my OB.  "Just trying to see his heart!", they chuckled uncomfortably.  He suggested that we talk in his office after I wiped the goo from my stomach.

Here is where the alarm bells started going off.

We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time.  He looked a bit grim and was apologetic almost to the point of tears.  I was trying to wrap my brain around what Down syndrome had to do with my baby's heart.  Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.  

He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome.  I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.  

We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.  

Waiting really sucks.

Talking to the pediatric cardiologist was surreal.  She explained the diagnosis:  Complete Atrioventricular Canal Defect.  It sounded scary.  Here is the definition taken from the American Heart Association website:  

A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.

This was no run-of-the-mill hole that would close on it's own.  My baby had a big hole where he should have valves and chambers.  I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that.  This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.

"But, but ( I kept saying) he is growing so well!" and he was.  I could not imagine how he could be so ill when he seemed to be thriving in my belly.  The truth was, his heart didn't have to do much in the womb.  I was doing most of the work at this point.  I was happy to keep him safe for the time being and terrified of what would happen when he was born.

In March, we found out our second son had Down syndrome.

We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us.  So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure.  But we didn't know that, yet.  This was a time before Facebook or Google.  Finding information about Charles' issues was daunting and mostly, really scary.  Hardly any of the information I found was comforting.

The weekend after the Down syndrome diagnosis, we went out to breakfast.  We were scared and sad and looking to distract our two year old.  When we sat down, we saw a family in a booth nearby.  Like us, they were a mom and dad and son.  Their son looked to be about fifteen and he had Down syndrome.  I marveled at how totally normal they looked; how happy.  I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine.  We would get through and someday, we would be the family for someone else to look at and say "Huh.  They look so normal".  

If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.

Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm.  He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.

When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy.  I had never been more happy to meet another human being in my life.  After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.

Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight.  He was not what you would call a champion eater, so I was pumping breast milk night and day for him.  He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.

By the time he was four months old, we were giving him medicine to offset the affects of heart failure.  I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid.  At this point, he had bulked up sufficiently that they decided to schedule his surgery.  He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.

As I said before, waiting sucks.

I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever.  I put my hand over his broken little heart and willed everything to work out well.  

As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio.  I literally can't type those words or hear the opening notes of the song without crying. 

Our boy was so little that the anesthesiologist carried him in his arms back to the operating room.  The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.

Then, the waiting.  So much sucky waiting.

We were warned that our baby would be unconscious and that he would look bloated.  He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.

Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery.  He was home within a week.  The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.  

It is amazing to me that a surgeon could take my poor son's little mess of a heart and make it into a well functioning organ, but that is exactly what he did.  I was grateful to him for delivering my son back to me and even more grateful that when he needed a second repair to fix a leaky valve almost six years later, the same, amazing surgeon would again bring him safely through and make his heart better than new.

The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us.  He handed over his Gameboy, let us hug and kiss him and wheeled away from us.  

Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone.  Keeping a six year old boy still is no easy task.  Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten.  I shed many happy tears that day.

Charles is now fourteen and he has a routine visit to the cardiologist just once a year.  His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore.  He takes no heart medication at all and has no restrictions because of his condition.  The only physical reminder of his surgeries is the scar from his clavicle to above his navel.  He talks about it now like it's a war wound.  He's kind of proud of it.  He's definitely earned that right.

Shame On Us

Today is Robert Ethan Saylor's 27th birthday.  

If you don't know Ethan, I have written about him here, here, here and also here.

I will sum up Ethan's story in a few words:  He was born in 1987.  He had Down syndrome.  He loved and was loved.  He died on January 12, 2013, three days after his 26th birthday, over the price of a movie ticket.

My last line usually garners much debate in articles, but essentially, that is what happened.  The exact details of the incident that happened in the few minutes between screenings of "Zero Dark Thirty" may never come out, because maddeningly, shockingly, sadly the off duty officers involved in Ethan's death were never charged with anything.  Ethan's death was ruled a homicide, but no charges were ever filed (you can read more about that, here).

I find it hard to understand.  If someone can be charged with involuntary manslaughter when they accidentally kill someone with their car, shouldn't they be charged with the same if the accidentally kill someone with their hands?  I am no legal scholar, but something seems amiss, here.

Since that day, it has been mainly on the family to speak out.  They were joined by some Down syndrome advocates in crying out for justice.  We have called upon our national organizations to act, to denounce and to support and eventually, with much prodding from the advocates, our national organizations began to speak out, though,  too quietly and nicely for my taste.  If it had been up to me, as director of a national organization WHOSE VERY REASON FOR EXISTING is to advocate for those with Down syndrome, I would have called for an ad in every national paper saying "Down syndrome is not a cause of death".  But, that's just me.

So, it was mostly up to the family and a small group of fierce advocates to get the story told.  Slowly, articles began to appear in national papers, but still there were plenty of people even in the Down syndrome community that hadn't heard about the story, even six months after it happened and even still, today one year later.  I find that absolutely appalling.  I find it hard to understand why you can say the name Trayvon Martin and everyone knows whom you are speaking of, but saying the name Ethan Saylor doesn't even necessarily ring a bell with people who should care the most.

Part of me understands that people don't want to be reminded of all the terrible things that happen in the world.  I can relate to that.  I don't watch the news with any regularity because of it; it all seems like bad news, from the top stories to the weather.  They may save 45 seconds at the end for some kind of "feel good" moment, as if that will erase the last half hour from our collective psyche.  It doesn't work.

So, many of us surround ourselves with what feels good and we try to ignore the bad and the ugly.  We look at cute baby pictures instead of dealing with what is frightening.  I do it, too.  There are times when calling for justice seems like a monumental task; mostly, because it is.  There are times when all I want is to hug my own kids and look at pictures of babies and kittens and to stick my fingers in my ears and say "la la la la, I can't hear you".  And I do; sometimes, for weeks.

I have to get back to the fight, though.  I can't tolerate just being sad or angry.  I have to act, or else I feel like I have no right to complain.  I deserve an injust world if I am not willing to fight for justice.  

I think this is a lesson that the Down syndrome community needs to learn from the LGBTQ community.  When one of theirs is hurt or killed, we all hear about it.  We all react.  Those of us who have the will, act, in ways big and small, so that justice can be carried out.  We work together to make the world better, not just for LGBTQ people, but eventually, for everyone.  

I have written before about this line of people waiting for justice.  Individuals with intellectual disabilities are on the back of the justice bus, it seems.  I wonder why we can't see that the line really doesn't exist and the bus is a figment of our imagination as well.  We are all human and we all want and need the same things.  A cry from one of us should be heard by all of us, regardless of race, sex, station, orientation, religion or lack thereof, etc.  If I can't see a bit of myself in every other living being, what hope do I have that someone will relate to me?

I urge the national Down syndrome groups to start acting for real change.  Do not let another year go by without calling loudly, publicly for change in the public perception of those with Down syndrome.  It's not about preaching to the choir.  It's about demanding that the rights for our children are recognized.  You have the means, you have the forum, all you need is the will.

I urge gay rights groups and women's rights groups and minority rights groups to look at Ethan and see your own fight and join us.

I urge individuals to stop crying over how sad this is and DO SOMETHING!  Pick up a phone, send an email, write a letter or a comment or a blog post or SOMETHING.  Take action, or expect to see more of the same again and again.

If Ethan's tragic death can mean a change in the way people with Down syndrome are treated, there may be some measure of peace his family could receive in that knowledge.  Isn't it the least we can do for them?  For Ethan?  For other victims of injustice?

If we don't care enough to act, shame on us.

The Water Heater as Life and Christmas Miracles

On Christmas Eve Eve, our water heater went out.  The kids and I were eating lunch, when all of a sudden, there was a hissing, teakettle-like whistling coming from it.  It took me a few minutes to realize what it was and when I did, I called my dear husband, held the phone up to the thing and said "the water heater is doing that".  He talked me through shutting off the water supply to it and the hissing stopped.  I was momentarily relieved in the silence, but almost immediately starting sweating.  

"How much is a new water heater?"  

Since DH would be home within a couple of hours, we hung up with the plan that he would deal with it then.  Of course, we had no hot water now, but it was no big deal at the moment.  I had already showered. The kids had no school, so they could be a little stinky for the time being.  

But, seriously... "How much is a new water heater?".

That was the song playing in my head for the next few hours.

When DH came home, he confirmed that the darn thing was indeed, shot and after taking a fast shower in what was left of the waning tepid water, he started making calls.  The good news is that my DH works for a heating and air conditioning company and they install water heaters.  They would come out first thing in the morning and by noon, we'd have hot water, without the tea kettle sound.  The bad news is that we'd still have to pay for it, somehow and for today, I'd have to do dishes with ice cold water.  The fact that it was literally 1 degree outside made this prospect really unappealing.

I sucked it up, telling myself that this was a First World problem and I was lucky that I had a roof over my head and indoor plumbing...even if my hands were numb through the dish washing gloves.  Lucky, damnit!  Suck it up!

The service guy that came the next morning was very nice.  While waiting for a helper to come so they could carry the old one out together, he decided to take a look at the furnace, which was rattling near the hot water heater.  

He asked if it always made that sound, and to my memory, it had for a while.  DH had replaced parts and cleaned it and done all kind of tinkering with it, but it still rattled.  It was really annoying when we tried to watch TV, or have a conversation or pretty much anything when it started up; but we were used to it; annoyed by it, but used to it.

Since he had some time, he asked if I wanted him to check it out.  I figured, "what the hell?", since we already couldn't really afford a new water heater, we might as well add the furnace servicing on top of it, because what's another couple hundred bucks?  Anyway...

I was in the kitchen when he called me over to listen to the furnace.  I thought it was funny, since normally I could hear the stupid thing from the kitchen anyway.  He assured me that it was running and I couldn't believe it!

In all the tinkering DH had done, he hadn't realized that there were two little gaskets that had dry rotted.  Once they were replaced, the thing quieted down to a dull hum.

I could have kissed that service guy.

After it was all said and done, DH came home, also professed his love for the service guy, but also for his boss who said (When DH asked for the bill) "Merry Christmas!".  It was on the house.  It helps that my DH is the most ridiculously fantastic employee in the world.  Maybe it's the fact that he was in the Marines, or maybe it's just that he is a perfectionist by nature (I think it's the latter).  He's just an awesome guy to have on your team, whatever that team may be.  I am lucky; hot water, or cold, rich, poor (mostly kinda poor) to have that guy.

Christmas came and went.  In my busy-ness, I didn't give much thought to the now quiet furnace or the miracle of "on the house" hot water.  I was grateful, thankful, but beyond that, focused on dinner and presents and missing family and friends and trying to find five minutes to be alone with DH.

(that's a blog post for another day:  Intimacy in a Small House).

This morning I woke up, heard that quiet furnace and started to wonder about what other annoying things I was used to.  I mean, surely if I can listen to a god-awful, rattly furnace day in and day out and think " Well, yeah, that's just the way things are", there must be other things that I am used to that need to be changed.

I'm used to being heavier than I should be.
I'm used to being out of work.
I'm used to these drafty old windows and this cold, icky climate.

I'm wondering what kind of service guy I need to call to fix this; but I am pretty sure she already lives in my head.

It's time for some changes and a new year is the perfect time to make a plan.  2014:  The year of the un-rattling.  

Happy New Year!

Hypothetical

I have written ad nauseum about losing a good friend (ex-boyfriend) of mine.  I probably wrote five or six (or more) different posts on different blogs about it over the years, and much, much more than that in various diaries and such.

Here is an excerpt from one of my favorite posts:

My favorite song to listen to when I am depressed is "Smoke" by Ben Folds Five.  You can feel the despair in the way he bangs the piano keys and in the catch of his voice.  

But, the lyrics...therein lies the magic.
"Here's a secret...no one will ever know the reasons for the tears"

That line says it all.

It's hard to lose someone that you love, but I have found that it's the sadness that no one understands that is the hardest to deal with.  

For example:  if your cat/dog/significant other dies, everyone knows why you are sad.  If your high school boyfriend that you hadn't seen in three years dies, people are sympathetic, but only to a point.  When it's been a year and you are still talking about it, people wonder what's wrong with you.  When it's been almost twenty, they just think you are crazy.

"They were broken up!" they say to themselves.  They think they know the whole story.  But they don't.

This year marked twenty two years since he passed.  It also marked the fact that he has now spent more time dead than he ever did alive.  

I've spent many hours contemplating his death.  Even so many years later, I still find myself reaching for him telepathically.  I know that this will sound weird, but of all those that I have loved and lost, he has kept in touch the best.  It's complicated; just like it was when he was here.

I imagine that it's hard for my husband to understand this relationship.  I say I imagine because we haven't talked about it much.  Mostly, I am afraid to bring it up, for fear of sounding like a crazy person.  Of course, I am much more prone to jealousy than he is, so maybe I am just that:  crazy.  

The dead have a way of only showing their good side, though.  I forget how angry he made me and remember how much he made me laugh.  I forget that his skin was not always flawless; in the beyond, he glows with color and health.  Dying before your twenty first birthday helps, too.  I mean, it's pretty much downhill for your looks somewhere around twenty eight, so he had the privilege(?) of dying before he started balding or developing a beer belly.

I'm not saying any of this is logical.  What I am saying is that it's a tough act to follow.  

The guy I was with when it happened understood this and was, in turn, totally jealous of a corpse and actually angered by my grief.  Those were fun conversations.  Seriously?  I need to explain why I am crying?  Or worse, hide the fact that I am sad?  Geez.  

I'm pretty sure that was the beginning of the end for us, even though we stayed together for another eighteen months.  I was lost in wishing I had done things differently; regretting that I hadn't called my friend after what would be our last fight.  Too much grief and too many unresolved and un-resolvable feelings messed me up.  

I can barely remember the girl I was when I met my husband in 1992.  I was still grieving KD and I had just lost my maternal grandfather, whom I adored.  I was lost.  I remember arming myself with sarcasm and hiding my vulnerability behind a thin wall of bravado.  "You are dating someone else?  Who cares?!?"  (ha).  I'm not sure how quickly he realized that I was mostly bluster.  I'm really not sure what there was of substance for him to be attracted to, but there must have been something. I think in my sadness I had become something of a ghost, myself.  Maybe he was a bit lost,too.  Maybe we rescued each other.  

In any case, this year marks twenty years that my husband and I have been together.  Twenty years!  In that time, both of our lives have been touched by plenty of grief.  We've lost five grandparents and three parents.  We've worried and struggled and have become a family of five along the way.  

Somehow, midst all the pain, we've managed to become more, rather than less.  The sorrow has colored us in, rather than diminishing us.  We've become stronger as a couple and grateful for what is, rather than wishing for what isn't.  It hasn't been an easy lesson, but I am grateful for it.  

I am glad that I have learned that there is more to life than "counting my abs and lovers", something I used to say about my hypothetical single life.

As for my long gone friend, I will always miss him.  I just will.  There is not much I can do about that.  But as I have grown in wisdom, I have learned to feel lucky for what was and what still is.  Life is a gift.  It may be poorly wrapped at times.  It may be smaller than what we were hoping for, but if we hold it up to the light, we will see its beauty and it will be a joy to behold.

Boxes: Labled and Otherwise

A TED talk I watched today (Here's the link) really got me thinking about the boxes we put ourselves and others in and how we label those boxes.  

We label things out of necessity, otherwise everything we owned would be put into a giant junk drawer/closet/garage, never to be found again.  So, labels serve a purpose...for things.

Labels are good for people if, and only if, the person you are labeling identifies with the label and you may use it only if they feel positively about it.  For example, you could label me fat, but unless you want to make me cry, please don't.  Label me funny and you will be right...and if I cry it will be because I am a total sap, not because you've hurt my feelings.  

Positivity in labeling is VERY tricky in the world of disabilities.  That is a post (or seven) for another day.  All I will say here is PLEASE follow the lead of the individuals with disabilities and their advocates; always.  Words matter.  

I found it interesting when Ash spoke about how angry it made her to be asked whether she was a boy or a girl.  I wondered why she chose to dress in a way that made it ambiguous if it was such an issue.  I mean why?  If you want people to know you are a woman you should have long hair and wear pink and not camouflage, right?

I'm kidding, ...sort of.  The problem, of course, is the boxes that we put people into.  The ??? box does not work for us.  We need to name it.  We need to know.  Does a gay man go in the pink box or the blue box?  What about a woman?  What if she is straight but HATES the color pink? What if she had cancer and her hair has not grown back?  What if she is happily married, but HATES long, sweaty hair?  What if she is a lesbian but (horrors!) looks straight?  What if they are trans-gendered?!?!? Boom. Heads explode.  

And to answer my own question about how Ash dressed:  Maybe she was comfortable that way.  Maybe she wanted a fight (I can relate to that).  Or maybe, it was a little of both.  Or, maybe she just didn't feel that she had to put herself in the "girl" box.  She is a girl/woman, she is gay, she dresses in jeans and button downs and her hair is short.  Geez, that's a long label.  It doesn't fit and that bothers us.  In turn, it bothers(ed) Ash (she seems cool with it now) that it bothers others.  

This is getting to be like a movie that involves time travel.  I'm going to leave the "chicken or the egg" conundrum for another day as well.

This talk also made me pause and think about how my occasionally (okay, often) militant approach to issues might have backfired.  It is something I have been thinking about; trying to figure out a way to get my REALLY IMPORTANT POINT across without resorting to shouting, or my absolute favorite: sarcasm.

It's really, really hard.  

I don't think I realized I was doing it, or rather, realized how it sounded until I encountered some other shouty people with whom I mostly agreed.  The substance of what they were saying had merit, but the delivery system was flawed, to say the least.  

NOONELISTENSWHENYOUSHOUTATTHEM!!!

Wait, what?  No one listens when you shout at them.

They might hear you for a few seconds before it becomes BLARRRGH!  and they tune you out; maybe forever.  

So, you need to pick your battles, your forum and recognize that you are not the only one fighting.

Lastly, this talk got me thinking about my own labels.  It's funny, because when I think of labels for myself, none really come up, other than ME.  Finally, I am me, after years of trying to figure myself out.

I have short hair, which I love.  I am a mom.  I am a terrible dresser.  I have blue eyes that I think are nice. I am married to the best guy I have ever known.   I identify as being straight, but I love K.D. Lang and think Salma Hayek is hot.  What does that mean?  I means I have ears and eyes; not much more.

It's not that I don't think labels can be useful.  They can.  They can help navigate grocery aisles, or libraries, or help you find a file.  I'm just not so sure how great they are when used to identify an actual, living breathing human and not some caricature.  Labels don't tell the whole story, just a little, tiny piece of it and only the piece that your mind can perceive.  No matter how many labels you put on me, you'll never never know ME, unless you put them away.

Escape

In March 2004, I found a flier at my gym advertising marathon training.  Somewhere in the back of my mind, I had written "run a marathon" on my sub-conscious "before I die" list.

I think it was there because it seemed really, really hard; almost impossible.  If I can do THAT, I reasoned, I could do just about anything.  It wasn't that I had never run before; I had.  When I was seventeen and going through my first, painful breakup, I ran as means to deal with my feelings.  I ran a lot.  I ran in the dark and came home so exhausted that my brain didn't have room for making me feel terrible.  I slept, ran, went to school...repeat, for months.  I lost about twenty pounds that I really didn't need to lose at the time.  Lots of running and eating one meal a day will do that to you.

That spring, I came out of my funk, wiser, more driven and with a hard body to boot.  How I envy that girl.  17 years later, plus three kids, running was not quite as easy as it had been in those days.  My youngest was not quite four and my oldest was seven and a half.  I was coming out of the constantly-sleep-deprived phase of parenting and smack in the middle of school-homework-IEP hell.  I was starting to feel like maybe I needed to get a job; but really, I wanted to get a life beyond being "Mommy".

My husband, who has always been my loudest cheerleader, read the flier I brought home and said "do it!".  No whining about giving up the next six months of Saturday mornings to take care of the kids while I ran (like I would have done if the shoe was on the other foot), no complaining about not having any free time of his own, he gave the thumbs up with no hesitation.  

He wins husband of the decade for that.

My training was taking place a thirty minute drive away from home.  We would run at 7 am every Saturday until the weather got warmer, then we would run at 6.  6 am runs meant going to bed early on Friday and getting up at 4:30 on Saturday.  It is a testament to how desperate I was, that I was willing to get out of bed in the middle of the night to do it.

As the runs got longer and longer on the weekend, I realized that marathon training was the perfect metaphor for being frustrated with parenting, with things that were out of my control, with life in general:  I wanted to run far away.  Since I couldn't run away from the crap in my life without losing the wonderful parts (my husband and kids), running for hours, thirty minutes from home became my salvation.  

I did wind up completing the Chicago marathon (read about it here), along with a 28 mile warm up run a month before.  I have honestly never felt prouder of an accomplishment than I do of that.  Yeah, I traveled alone around Europe on very little money and I moved far away from my hometown at a young age; but those accomplishments were achieved before I had any real fear.  The world of being a parent and the world of being a single, young adult looks very different and there is a good bit of fear involved.  As much as I think that that teenager could learn from this 43 year old; I think this 43 year old could learn a lot from that fearless teen.  

I don't want to be shaken out of stagnation by a health emergency or any more death.  Too often it is a cataclysmic life event that makes us (me) think about what really matters.  Why?  Why can't I learn from my own glorious triumphs and bitter failures?  Why do I not seek out my own greatness because of the fear of failure?  Why am I so afraid of being poor that I can not figure out how to have money?  Why is it easier to stay still, rather than move in a positive direction?

I think I have just answered my own question.  It's not.  It's not easier to stagnate.  It's awful and soul crushing.  It makes the fear bigger.  

Who am I?  Am I the middling house wife whose biggest accomplishment on any given day is doing all the laundry and dishes?  Or, am I Adventurous Amy?