Friday, July 26, 2013

Holy Wolverine on a Motorcycle: I Love Hugh Jackman!

Today was the perfect, rainy day for a movie, so I took my younger two boys and a friend to see "The Wolverine".

I'm not gonna lie.  I LOVE the fact that I can go and watch Hugh Jackman in his sideburns and his white t-shirt and his claws on the big screen and not feel like a huge perv because it's an action/superhero movie and my boys, like most boys, love that crap.  Love it.

But for me?  It's porn.  Totally legal, awesome, PG-13 rated, all American porn.

If you asked me about the story, my answers would range from "What?" to "I don't care."

I think it took place in Japan, mostly.

Don't get me wrong.  I think Hugh Jackman is super hot in a tux singing show tunes and dancing, too.

Or, sweaty and riding a horse in the Outback.

Or, toothless and pulling a ship with a fat chain around his neck, while still freaking singing his lungs out.

Hot, hot, HOTTT!

But, the sideburned, leather jacket and jeans wearing, ass kicking, angry, claw having Wolverine is my favorite.

Hell, I don't even care if the gay rumors are true.  He can be RichardfreakingSimmons gay for all I care, as long as he keeps playing Wolverine.  

It's not like I'd actually have a shot in any case.  Or, that I would even consider committing adultery with anyone...even if Hugh Jackman did beg me to jump on the back of his motorcycle.  (You know that, right, Honey?!?)

Okay, let's not exaggerate...I'd totally jump on.  But, it would be a one time thing, I swear.  

And then, the next time he wins an Oscar/Grammy/Tony/GoldenGlobe he'd look straight into the camera and say "this one's for you" and mean me.

Going to sleep with a smile on my face, now.  :D

Thursday, July 25, 2013

Book Rant: "The Unfinished Child" by Theresa Shea *** spoiler alert ***

I had not read a book on Down syndrome in years.  My son is fourteen and I read Martha Beck's memoir "Expecting Adam" when I was pregnant with him. I loved it so much that I figured I would just be disappointed by other books on the subject.  

And I was right.

I'm not exactly sure what made me read this one, except that I was in the library and the title caught my eye.  

The story of Margaret and Caroline really held me.  The rights of children with disabilities in orphanages around the world has long been a passion of mine and the description of a young mother giving up her baby seemed realistic.  An awful reality for sure, but an all too common one at that time (the late forties) in North America and an all too common occurrence around the world, still, today. I wished Margaret would have removed Caroline from the institution, but I can somewhat understand that she felt she had no alternative.  She was a product of the time she lived in.

As I read on, I became increasingly irritated by the characters in the story. Elizabeth and Marie have a totally dysfunctional "best friendship" that should have been put out of it's misery years earlier.  Both women are whiny and weak and instead of really confiding in each other, (though they can't go a few days without seeing or calling each other), they hide their true feelings.  I'm sorry. What are best friends for if you can't be real with them?  

Elizabeth bullies her husband into ten years of fertility treatments that he doesn't necessarily want and though she is adopted herself, she is not considering least not until nearly the end of the book.

Marie laments her poor parenting and just when you think her new baby will give her a chance to try and be better, she has a late stage abortion because the baby has Down syndrome.  

Oh, and did I mention that when Marie tells Elizabeth about the diagnosis, Elizabeth offers to take the baby when it's born?  Are you freaking kidding me?
Can you even imagine that scenario?  Did I say that they were dysfunctional?  

Don't even get me started on the other husbands in the book.  Or, the fact that the aborted baby's ashes are put into an urn to be placed on the mantel, as if she just died of natural causes.  ARE YOU FREAKING KIDDING ME?!?!

The description of Marie feeling the baby kick and still having the "procedure" of injecting salt water into the fetus' heart done made me hate her; really, hate her.  I hated her for listening to her useless husband.  I hated her for being so weak.  I hated her for not even wanting to get more information.  I hated her for feeling sad, when she could have changed her mind at any point.  Fuck you!  Sad?!?!?

I have no problem with abortion in general.  Unplanned and unwanted pregnancies happen.  By all means, don't have a kid you don't want.  But, deciding to continue a pregnancy until you find out the kid might not be exactly "perfect" (like your other two are?!?!) is a completely different story.  We are not talking about a diagnosis incompatible with life when we talk about Down syndrome; we are talking about one that is incompatible with a perceived "lifestyle".  If you think that having just "typical" kids is not going to put a cramp in your lifestyle, then let me tell you, you are in for a shock.  Unless you've got Brangelina money, kids will change everything.  And even if you do, they will still change everything, but you won't have to worry about the bills. What happens if one of these "perfect" kids starts showing signs of learning disabilities, or Autism, or homosexuality?  Will you give them away because they don't fit the mold of your ideals? 

I probably could have put up with all the rest of the crap in this book if Marie had decided to keep the baby and learn how to be a better parent or if Elizabeth decided to adopt a baby with or without Down syndrome; but no, it was not to be.

In the end, there was nothing redeeming about either of the main characters and I found that deeply disappointing.  

The one thing this book does is raise questions about the ethics involved in selective abortion and the broader issue of how we as a human race view people with Down syndrome.  As important as I think these issues are, I don't think this book will help anyone in their quest to find answers, it will only raise more questions.

Thursday, July 18, 2013


I have a rich fantasy life.  I always have.  Most of my fantasies are not fit for public consumption.  Let me re-phrase that:  Most of my fantasies are not things that I want my mom to read.  Maybe in a few years, under a pseudonym.  :)

Anyway, what I am talking about now is a fantasy I have for the future of Down syndrome.  

In this fantasy, Wils and Kate give birth to a royal, gorgeous, sweet baby with Trisomy 21 and they and the Royal Family and the whole world embrace this baby with no reservations. 

The baby is photographed and cooed over and no one on late night television feels the need to tell "r"-word jokes.

What would a famous-from-birth child with Down syndrome do for the acceptance of other people with Down syndrome?

What would it do for children whom, at this very moment, are living in filth and isolation and despair in institutions around the world?

What would it do for parents to be, who, today, receive a diagnosis of T-21?  

What would it do to stereotypes of all kinds?

What would it do to us as human beings?

Would we collectively become more compassionate?  

Would we start to look at our own personal prejudices?  

Would the lightbulb go off for the world that maybe, just maybe we are all one, instead of: 

somewhere in-between

Would we start to think in terms of love instead of labels?

Possibilities instead of limits?

Would we start to see a BABY; nothing more or less than that.  Just a baby, wanting and needing love and nurturing and every chance available to grow into their potential, whatever that potential may be.

It is a fantasy, I know.

But, oh, if it were real.

Ten Percent? (Updated 4/15/15 to include new information)

The original is copied from a post I did on Facebook four years ago.  I have edited it to include up to date information.  New information in bold text, below. ~ ADH

I read a statistic the other day that made me very sad. 90% of pregnant women who receive a diagnosis of Down Syndrome for their fetuses choose to abort. It’s a statistic that I had read before, but, now it hurt even more because of the chance that soon, that number may reach almost 100% because of earlier, less invasive testing and very little hands on knowledge of Down Syndrome on the part of doctors.

(New information has come to light and I think it is very important to share it.  Please see the studies here and here.   Brian Skotko puts the number at 74%...and that 74% only applies to pregnancies where the mother has chosen to have DIAGNOSTIC testing done.  I emphasize that word because the early blood tests are not diagnostic; they only give a statistical number.  Women with elevated risk according to these tests can choose to have a diagnostic test, such as chorionic villus sampling or amniocentesis done to get a true diagnosis.

Therefore, it is FALSE to claim that 90% of babies with Down syndrome are not born (which seems to be the way people, including myself in the past, incorrectly interpret things).  The numbers vary depending on what studies you look at, but the bottom line is that 90% is nowhere near correct and further, when you look at the actual percentage of terminations in ALL Down syndrome pregnancies, not just that small number that have been subjected to diagnostic testing, the number is somewhere around 30%.  What a tremendous difference!  And what could this potentially mean to the woman getting this information today?  For me, it means the difference between feeling a part of a very small minority versus a rather large majority.

I think it is very important that these numbers be shared far and wide.

Here is a link to another post by Mark Leach who explains why this information is not all rainbows and unicorns.  He also breaks down the numbers really well; in a way even a math-challenged person like myself can (sort of) understand:  Mark's post.

It still remains to be seen what impact the early blood tests will have on these numbers, as more women could potentially opt for additional, diagnostic testing, but I find it heartening to know that 90% is not a true number, nor even close to it.)

Before you think you know where I am going with this, let me assure you that I am very pro-choice. I have no problem with abortion in general and I feel that prenatal testing is very helpful. It’s a good idea to know something about your child before they are born, just to eliminate a few of the unknowns, which are many.

The problem arises when you can learn so much about this potential life that it becomes nothing more than a series of cells; some coveted and some not-so-much. In some parts of the world, it is a defect to be born female. In some places, women have to be imported because the shortage is so great due to selectively eliminating the “wrong” sex prenatally. 

Let me repeat: in some places it is a defect to be born female.

In China, eugenics have been practiced by law since 1995. “Unfit” couples are forced into sterilization before they are allowed to marry and abortion due to “undesirable” attributes in a fetus are sky high. Proponents of China’s eugenics law state that the less money you have to spend on these “defective individuals”, the more there will be for those who can better “contribute”. When did love and sex and procreation and the messy human experience become all about money?

Does a quest for perfection make a society better? Did it make the Nazis better? Or do we look at them today as the absolute worst in mankind?
The problem with perfection is that everyone has a different opinion of what “perfect” is. I think Jason Statham is the height of perfection in a man; witty, charming, sexy, oh, I could go on. But, Jason Statham is also balding and kind of short. Does this make him less perfect? Not, in my eyes, it doesn’t.

I find men with pear shaped hips unattractive; ditto, for lack of a strong chin. But, if every man looked like either The Rock or Jason Statham, (both perfect men as far as I am concerned) how would I know what “attractive” means to me?

I have a twelve year old son with Down Syndrome. Every time I read one of these statistics, it brings me back to my own decisions. I honestly ask myself “if I knew then, what I know now, would I change anything?” and I honestly answer “Hell, if I knew then what I know now, I might not have any kids at all!” and I would be telling the truth.

Kids are messy. They rob you of your youth, your looks, precious sleep and that space that you were saving for your library. They puke on your leather couch. They fart in front of people you want to impress. They burp loudly at the quietest moment in the movie, in a crowded theater. Boys pee near the toilet and when it does actually reach the bowl, it usually hits the seat first; the seat you sit on in the middle of the night without looking…GAH!!!

Kids are expensive! Has anyone seen how much it costs to fit two preteen and one teenaged boy with shoes? Holy crap! Forget about that romantic Greek isle cruise you’ve been saving for; it’s all going to go to Chuck Taylor‘s. Parents to be? Forget about college and start buying shoes on sale now!!! Believe me, those Chuck Taylor’s will still be in style and if they aren’t, it will be a great lesson in managing disappointment.

Kids also fill you with pride. Sometimes that pride comes from finally taking off the training wheels so they can wobble (on their own!) down the sidewalk. Sometimes it comes in the form of a letter from a teacher saying that your child is in the school spelling bee. Sometimes it is in the form of a wrestling pin or a game winning basket or goal. And sometimes, it is in the form of an understandable word at the age of four or taking a few steps at the age of three. For me, it comes, when the kids at school greet my Charles with a hug or a high five or a “what’s up, dude?”. It often comes at Special Olympics events where I cannot contain the happy tears.

Pride, like beauty, is in the eye of the beholder.

"People often say that 'beauty is in the eye of the beholder,' and I say that the most liberating thing about beauty is realizing that you are the beholder. This empowers us to find beauty in places where others have not dared to look, including inside ourselves."
 ~ Salma Hayek

I don't want to hear the argument about “eliminating suffering”. Who are you to judge? My kid isn’t suffering; not by a long shot. He is loved and loves life. He suffers no more or less than any other middle class kid in the U.S.

I guess my point is this: I don’t think that because something is scary, or messy, or overwhelming, or expensive, that it should be categorically eliminated. I don’t want to live in a world where difference is eliminated. If it were, we would be missing out on 90% of what makes life, life. If we bypass struggles and suffering, how will we know when we’ve reached our goals? And what beauty will we miss along the way?

Charles is now almost 16, in high school and still loves kitty cats, along with lifting weights and talking about girls.

Sunday, July 14, 2013

Eulogy Part Two or 2013 is a Bad Year for Grandmas

When I think of my maternal grandmother, a virtual storm of images, sounds, tastes and smells hits my brain.  

I see tan arms and legs, dark sunglasses and zinc oxide.

I see a blue and white beach umbrella.

I see and smell a wet dock, salt air and sand.

I taste the moistest and most delicious and gluten filled crumb cake that there ever has been.  And noodle salad that no one has been able to come close to making; though my mom is getting there.

If you asked what the secret ingredient was in virtually all of her recipes, the answer would most likely be "sugar" and lots of it.  This probably explains my addiction to all things sweet and plays a role in why I am (only just slightly) above my target weight.

My grandmother was a strong alto in the church choir; she never possessed the most melodious voice in the bunch (that job is for the sopranos), but it was always full of depth and belief that made the hymns come to life. I loved to hear her sing.  

I also loved to hear her yell "BUUUTCH!!!" to my grandfather when he was out tinkering in the garage or in the basement.  I never asked her why she called him that, as his name was Charles Howard and he had plenty of other nicknames.  I think she was the only one who called him that.

When I told my grandmother that I was going to name my unborn middle son, Charles after her Butch, she was happy.  When we found out later on that he would be born with Down syndrome, part of me was a little worried that she wouldn't want him to have his great-grandfather's name.  ( I can't imagine thinking this now, fourteen years later ).  When I told her of Charles' in utero diagnosis, she responded with a story of her good family friend (Uncle Jerry) whom I loved and thought the world of and his brother who had had Down syndrome.  She got emotional talking about him and said how loved he had been and how when he hugged you "you knew you were hugged".  I didn't have any doubts after that.

A few months after Charles was born, my grandmother and Aunt Marilyn came out to Chicago to meet him and celebrate my oldest son's third birthday.  For five days we ate ice cream cake, played cards and laughed our butts off.  One of my fondest memories is hearing my grandmother and aunt laughing at the sad air mattress in our "guest" room.  It took up almost the whole floor and they had to climb across it to get in or out.  Sometimes, a grandmother shows her love by getting on a plane and flying for two hours even though it terrifies her and by sleeping on a horrible air mattress just so she can visit you.

When I was about seven or eight, I went with her and my grandfather to visit some friends of theirs in Lake Hopatcong.  The grownups were having a good time and I was getting a little bored, so I decided to take a walk to the beach.  Though it was not far, I got turned around (I am famous for my lack of an internal compass)  and lost.  I'm not sure how long it was that I was gone, but it had been daylight when I left and it was dark when I was finally found.  When I was reunited with my grandmother, I was afraid she would be angry.  The look of relief on her face was enough to let me know that I was not in trouble, that she had just been very, very worried.  I didn't know it at the time, but my grandfather's little brother, Francis, drowned in the Ramapo River at the age of five.  I'm sure they were reminded of that day when they were out calling my name.  Sometimes, a grandmother shows her love by hugging you instead of spanking your butt.

It's hard to think of my grandmother without thinking of my grandfather.  He has been gone for twenty one years and I am sure that a day did not go by that he was not her first thought when she woke up and the last thought before she fell asleep.  

He was the light of every gathering.  He was the fun and the laughter.  He was all hugs and love.  When he died, a light went out for all of us.  

The last time I saw my grandfather, we were sitting on the couch watching Wheel of Fortune in Lanoka Harbor.  I was getting ready to drive back to California after spending the summer in New Jersey.  I knew it would be the last time, because his cancer was back and they were not treating it.  He still got under my old Volvo and rigged up the rattly muffler before I left.  Pop showed love through hugs and jokes and sometimes through repairs.  

When I returned less than a month later for his funeral, my grandmother stood outside her front door, keys in hand with her other hand outstretched behind her, waiting...

She looked at me after a second and said "I was waiting for Pop to take my hand".  

I still cry imagining her heartbreak at that moment and every moment that she remembered, again, that he was gone.

I talked with my Gram a lot in the days after my Pops death.  I remember saying "Don't take this wrong, but, Pop was my favorite".  She responded with:  "He was everyone's favorite".  Yes, I was a jerk when I was 22.  She wasn't insulted, I don't think, not really, anyway.  She knew exactly what I meant.  

I realize now, that he had it easier than her.  She was the disciplinarian and the one who made sure everyone was fed and clean and on time. Being in that position in my house has given me new respect and more love for the "tough one" in the household.  It's not easy to be overshadowed by "the fun one", but it is often necessary.  We can't all be the fun one; nothing would ever get done!

The last time I saw my grandmother, just a few days ago, she was not the person I am remembering, here.  She was forgetful, asking the same question three or four times.  Her voice was weak and quiet, where it had always been loud and strong.  I talked to her and sat with her a little bit.  She said her arm was itchy, so I rubbed some cream on it for her.  I could not get over how thin her once plump arm was.  I jokingly said "Man, Gram, your arms are so skinny!" and she smiled and kind of laughed.  Years ago, she would have been thrilled for skinny arms.  We both understood this.  

The last thing I said to her was "Bye, Gram.  I love you!" and I blew her a kiss out the door.  She responded with a wave and a quiet "I love you".

I will miss her terribly.  She was the bedrock that so much of my life was built on.  So strong and seemingly, permanent.  How is it that in the end, she really wasn't?  That she too would eventually die?  What does family even mean without her?  As a family, we will go on, but with her passing goes another generation.  Some call it the "Greatest Generation".  I called them Grams and Gramps and Gram and Pop and the greatest grandparents a child could hope for.

I can only smile and laugh at the memories and be happy that my Pop won't keep her waiting with her hand outstretched ever again.  

The glasses, Gram, Pop and Me.