Friday, May 31, 2013

Putting Out the Fire with Gasoline?

My bridges are in danger.

They all seem to be made of dry tinder, soaked in lighter fluid; and I am holding a Zippo.

When you have a need to burn things, you are called a pyromaniac.  What is the name for a person who ignites their past?  

Get on my side of the bridge or go back to yours.  Or stay in the middle and get burned.  It's up to you.

Wednesday, May 29, 2013

Guest Blog on Behalf of Stacey Calcano and T21 Brigade

I am honored to be a part of a tiny, but mighty group of determined advocates for people with Down syndrome.  ~ Amy

Wednesday, May 29, 2013

Open Letter to the National Down Syndrome Society (NDSS)

NDSS began the Buddy Walk in 1995 to spread its mission of promoting the "value, acceptance and inclusion of people with Down syndrome at the local level." In 2012, nearly 300,000 people participated in a Buddy Walk across the United States, and over $11 million was raised in the process. Local affiliates are expected (and contractually obliged) to give a certain percentage of earnings to the NDSS, as payment for utilizing the Buddy Walk name (trademarked) and framework.  Ethan Saylor, a young man with Down syndrome, died at the hands of sheriff's deputies in Maryland after refusing to leave a movie theater in January of this year, and NDSS ("The National Advocate for People with Down Syndrome Since 1979") has been criticized for its lackluster response in the aftermath of his homicide.  NDSS would like to separate the "joys of the Buddy Walk" from the "Ethan Saylor tragedy," while advocates for Down syndrome all over the world are left questioning the commitment of the NDSS to its mission. The Buddy Walk is the largest fundraiser for the NDSS. 

May 29, 2013

An Open Letter to the National Down Syndrome Society
(Why My Family Won't be Participating in This Year's Buddy Walk)

Last year, my family raised nearly $10,000 for our local Down syndrome group's Buddy Walk (our fundraising effort was so large that I was recently contacted to help field test this year’s newly improved Buddy Walk website).  Unfortunately, I cannot in good conscience participate in this year's Buddy Walk efforts after your failure to meaningfully advocate for justice in the aftermath of Ethan Saylor's homicide.

Two years ago when our family received news we would have a child with Down syndrome, I turned to you, the National Down Syndrome Society, for guidance and assurance.

Your mission statement served as a beacon of hope in a time full of unknowns:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

We were inspired by this message—and by our young son with Down syndrome—and became very involved in our local Down syndrome community.  We began revving up the troops for our first ever Buddy Walk. The 2012 Buddy Walk was our first experience as part of a much larger community.  We raised so much money that I received a gold star in recognition of my fundraising efforts. I thought, “A gold star!  I got a gold star for Carter!” The day was magical, and everything I'd hoped it would be.

The faith I had in your organization quickly faded in the wake of your late and limited response to Ethan Saylor’s homicide, a true test of your commitment to your advocacy on behalf of those with Down syndrome.  When I learned of Ethan's death, I wanted desperately to contribute in any small way I could to help his family find justice.  I knew that would not happen without an independent investigation into his death, and assumed the NDSS would take a leadership role to ensure this case got the attention and outcome the Saylor’s deserve.  Sadly, the NDSS response was not only deplorably late, but efforts to secure an independent investigation for the Saylor family were absent or minimal. 

The first statement released by F.R.I.E.N.D.S (and supported by NDSS) did not come until six weeks after Ethan's death, and emphasized that F.R.I.E.N.D.S are “strong supporters of the Frederick County Sheriff’s Office.”  Subsequent statements by NDSS stated that the organization was “determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again,” but this determination came at the cost of any effort to secure an independent investigation.  In addition, later press releases had erroneous information, called for no action from the Ds community (asking the community to please not attempt to contact the Department of Justice) and failed to adhere to a language of inclusion and respect I would expect from such a large, respected advocacy group.

Recently, it has come to light that Ethan suffered unexplained injuries before his death (a crushed larynx, suggesting the use of force), yet there have been no new or renewed calls for justice and an independent investigation.

I enjoy reading the “My Great Story” pieces on the NDSS website, but not all stories about individuals with Down syndrome are “feel good stories" or have happy endings. Does that make them less deserving of coverage from our national organizations and national news organizations? I would argue these stories are more important, and where our collective attention should be focused.  We should all focus on righting the wrongs that befall people with intellectual disabilities every single day. Certainly the homicide of a young man with Down syndrome, who went to the movies and died while crying out for his mother, deserves our attention.

Last week, I received an email from the NDSS asking my help in beta-testing the newly improved Buddy Walk site for this year. In response, I wrote:
“Thank you for including me on this distribution. However, I am very conflicted about participating in this year's walk. I am very disappointed in the way the NDSS and the NDSC has handled the Ethan Saylor tragedy. There has been no community mobilization around the death of this young man. The silence of our national organizations is so disappointing to me that I honestly haven't decided if we can, in good conscience, participate this year.”
I received the following in return: 
“I totally understand where you are coming from and would never try to convince you to do something if it doesn’t feel right. You know I would love to see your family’s gorgeous faces, but only if they are smiling and feeling in solidarity with what we represent as a national advocate. I would very much like to separate the joys of the Buddy Walk program and the Ethan Saylor tragedy.I am sorry you feel this way about NDSS. I am really proud of the efforts of my colleagues that have been at the center of all of the conversations and have worked really hard to keep all of our communications about the topic balanced and professional.  Please take as much time as you need to think about it. Registration will remain open until event day.”
This felt like a clear message that we are not welcome at the Buddy Walk unless we are “smiling and feeling in solidarity” with what the NDSS represents as a national advocate.  I’m clearly disappointed in the lack of leadership from our self-described “national advocate for people with Down syndrome” and am not able to separate the “joys of the Buddy Walk program” from the Ethan Saylor homicide.  Having slept on it, I believe I’ve had all the time I need.

This year, my family will not be walking in the NYC Buddy Walk. I cannot, in good conscience, support the NDSS as the same organization I thought it was a year ago. I hope to rejoin the Buddy Walk next year, and I hope that something changes between now and then. I hope you start living your mission:

“The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

In sadness,

Stacey Calcano

*For more details on Stacey's personal experience--as well as for specific links and a timeframe for the NDSS response on the Ethan Saylor case, please read "My Not-So-Great Story" here.

Rousing the Rabble

I am not one to remain quiet for very long.  Remember the woman in "Eat Pray  Love" who is "in silence"?  I would love to try that, just to see how far I could get.  I think, in my case, silence would have to mean not writing in a public way (meaning, my mom and sister and best friend won't read it), as well.  I get my ideas across much better through words on a page or screen than I do in conversation.

To keep these words and opinions to myself would be difficult, to say the least.  I would probably need lots of chocolate and terrible movies as a distraction.  Or maybe I could start running again.  That would certainly be the healthier way to go.

I should preface all of this by saying that I don't ever really intend to shoot my mouth off without thinking.  That is why I prefer writing.  I can delete before anyone sees how really crazy I am.  It does not work that way on the phone.  No.  On the phone, a person can sit in their comfy office, surrounded by colleagues that have already been warned of your lunacy with only your muddled CaliforniaMidwestNew Jersey accented voice over the speakerphone in your corner.


Change is really hard.  Change for the better should be much easier than it is, but somehow, we get caught up in what is easy and what is familiar and just what IS.  Sometimes, we get complacent.  Sometimes, we just wish someone else would take up the mantle of our cause and let us sit quietly on the sidelines reaping the benefits.  I'm not knocking that last part.  I have enjoyed many things that others have given their blood, sweat and tears to secure for me.

At some point, however, each one of us needs to stand for something we believe in and let the ones that come after reap the rewards.  Because if we don't, we cannot be sure that there is someone to take our place in the fight.

I just got off the phone after an emotionally exhausting hour of having my ass handed to me by someone that I thought was on my side.  It can be hard to convince people outside the circle of special needs that changes need to be made, but, when you can't even gain consensus with people who are supposed to understand, well, let me tell you, it's a punch in the face.

It cannot be a knockout punch, though.  I need to get out the smelling salts, dust off my pants and my ego and go out there again and again and again, because I know it is the right thing to do.

The main focus, for me, is the human and civil rights cause of inclusion on all levels for those with intellectual disabilities.  If you look at all the civil rights causes that have grown before this one, for blacks, for women, for gays, the fight continues until full acceptance and inclusion is achieved.  This has not really happened for any of these groups, but women have come pretty far (there is just that pesky gap in pay, limiting reproductive choices, rape culture...), blacks have as well (again, a huge list of what could be better) and gays still can't get married in most parts of the country.  So, those fights continue.

For individuals with intellectual disabilities, the fight is still in it's infancy.  Sure, we have come a long way since the days of putting your kid into an institution at birth to be forgotten.  Well, in this country, we have.  Around the world there are thousands and thousands of forgotten children in cold, soulless, hopeless rooms that they will never leave while still breathing. 

So, with all the horrors in the world, I can kind of see the tendency to pat ourselves on the backs and say "Look how much better we are!".  But, when it comes to human lives, better is not enough.  

We need to rise above better and become 

The best we can be.



We need to change the way people with intellectual disabilities are viewed.  We need to change hearts and minds.
We need to show those in power that we are all a sum of our strengths and weaknesses and not numbers on a ledger.
We need to show that there are ways to contribute in this world other than through our monetary earnings.
We need to show that equal treatment does not mean special treatment.
We need to be a voice for the voiceless, the powerless and the most in need of support.

We need to get out of our bubble; no matter how safe we feel in there.

Tuesday, May 28, 2013


See what I did there?  

I think way too much.  I know it doesn't sound like a bad thing, but trust me, it is.  

I also, occasionally, think too little.  I am spontaneous and short tempered and passionate.  Sometimes, I forget to think before I act.  Sometimes this works out alright and sometimes, well, it doesn't.  That's okay.  Some of the greatest gifts in my life came out of acting as though rational thought was not even a consideration (my husband, a couple of my kids...ok, all of my kids, moving to California...).  The list is practically endless.

Then, there are the things that I perseverate on: 


My weight

The environment

The meaning of life

I drive myself kind of crazy.

This tendency was bad enough before the invention of the Internet, but now, it has gotten much, much worse.

Now, whatever scary thought I get in my head ( " I am having a heart attack " / "my kid has Leukemia" /  "The World Trade Center Attack was an inside job"), I can find "proof" of it on the WWW.  Usually, I can find six million reasons why I should panic in the matter of half a second.

And I do least a little.

And then, the tiny, rational part of my brain says:  "Uh, hello?  Crazy?  Yeah, you need to take it down about seven thousand notches".  

And that also works...until the next time.

I was thinking about all of this when I heard back from the hematologist concerning my middle son, Charles, who had recently had a potentially scary blood test result (see Leukemia, above).  

After hearing that things were okay and hanging up, I had about two minutes of happy before I started to get sad for the kids who did not hear good news.  

I started to think about a little boy in England with months to live, thanks to effing Leukemia.  I thought about how, before the Internet, I probably wouldn't even know he existed, even though he is now pretty famous since he met the "Queen".

Before the days of Facebook at least, and for sure before the Internet and email, if and when I heard this story, it would be gone from my head soon after.  Sweet and sad, yes; but I don't know them.  I can't get wrapped up in every tragedy.

Today, however, I feel like I know little Ollie, the boy in the story.  I am a fan of his page on Facebook.

I have read his mom's personal account of his daily journey.  I have seen the many pictures of what going through chemo means.  I have cried for him and his family.  I am hoping for a miracle, as I know they are.

This is where it gets terrible and wonderful at the same time.  

Facebook has made me hate some people that I thought I loved and love some people that I have never even met.

It has made me realize the kind of person that I want to hang out with, call my family or friend and what kind of person I should aspire to be.

On this wonderful/terrible web I have met Buddy,

who lives halfway around the world, but I think of him every day and I am doing my best to make a small difference in his life. 

I have all this endless information in front of me.  Can I use it to fill my days with conspiracy theories and nonsense?  Sure.

Can I get angry at the injustice in the world?  Yes, and I should.

Do I perseverate on it?  Yes.  

But, I think that as much as I get aggravated and sad and sometimes, completely heartbroken, it is worth it, if I can do some good with it.  

Even if I just send some more love into the world, isn't that good?  I won't stop there, though.  I am doing...a little bit every day, but I am doing something.  

I hope my ripples meet Buddy and Ollie and Ethan Saylor and all those that I think about and work to help everyday.  

The same ripples have already washed over me and made me stronger and more determined to fight, to be heard, to stand up, to love, really love those that mean so much to me.

Facebook, with all it's flaws, has made the world closer.  If we can weed out the negative and cultivate the good, what kind of wonderful place will we live in?  

That, my friends, is something to think about.

Thursday, May 16, 2013

It's Getting Weird in Here - Amy's Brain; Part One Zillion

What is up with men who feel the need to compare some kind of pain they have had to childbirth?  Are they seriously bothered that a woman might be tougher than them in this arena?  Like they don't have enough power already?   You know, like making more money and holding more elected offices (by a lot);  they also need to win the "pain threshold contest"?  How insecure do you have to be to think like this?  I bet they are not challenging former POW's to a pain contest.  "Oh, bamboo under the nails?  That's nothing.  I had a kidney stone, once."  Please.  Get a life.

Oh, and kidney stone guy?  Guess what?  Women can get those, too!  But, you will never be pregnant.  You will never carry what amounts to a giant parasite in your body for nine months before passing it through the most sensitive part of your body and then breastfeed it for twelve months afterwards.  It will never happen.  

Don't even get me started on mastitis and how it feels like pulling a red hot poker out of your nipple.

Why can't you let women have this ONE and just be thankful that they do?  With all the shit we have to deal with on a monthly basis; couldn't you just be like:  "Wow.  Well done.  Thanks for putting up with that!"?  

And do me a favor.  If you and your partner decide to procreate, please FOR GODSAKES, do not say "We're pregnant!"  I am just warning you now, that if I hear this come out of your mouth, I will have to punch you in the nads.  Let's see how pregnant you think you feel with that pain.

How this guy ever got laid while being such an obvious douche, I will never know.

Thursday, May 9, 2013


(this is my condensed marathon because I cannot find the file in which the full version is saved.  Sigh...)

My only goal at mile 23 was to not let the street cleaner pass me.  I had heard it for a while, coming up behind me, sucking up and scouring the debris from the Chicago street.  But, like most every goal I had at the start of the race, this one eluded me in a cloud of black smoke and stench.  

And I started crying.  Again.  I had pretty much given up trying not to cry at this point.  I had been crying on and off throughout the race.  First, my tears were of joy and happiness and just being overwhelmed by the sheer size of the mass of humanity surrounding me.  Runners, millions cheering, the theme from "Rocky" was too much.   Who doesn't get choked up when they hear "Gonna Fly Now"?  

So, yeah.  I was crying again.  Only, these tears were of disappointment and thirst and hunger and agony.  WHY?!?! Why was I doing this, again?  

Something about bucket lists and wanting to rediscover my inner athlete and oh yeah, lose weight.

What an idiot.

I looked up at the street sweeper as it lumbered past and I saw the driver was gesturing to me.  Sweaty, dirty and humiliated, I was in no mood to be laughed at by some guy in sanitation.  

I looked again, too tired to flip the guy off, but wanting to and I saw it:  Three fingers.  Three miles to go.  Then, a thumbs up and a smile as he rolled past.

I still get emotional thinking about that moment.

He could have laughed.  He could have ignored me.  Instead, he chose to cheer me on, my only fan besides poor Yuyi, who was running behind me, afraid to leave me alone.  

I smiled for the first time in miles and miles.  I reached down and found some previously untapped reserve of determination and picked up the pace.

I finished that race, the 2004 Chicago Marathon, in eight hours, three minutes and 51 seconds.  

I was the last official finisher.  Go ahead, Google it.  

If you don't believe that, here's the article that some douchey writer from the Tribune wrote after he interviewed me by phone.  He stole all my best lines AND called me a "terrified homemaker".  Jerk.

That was not the plan.  Finishing?  Yes.  Last?  No.

It is here where I will say that something like 800 people dropped out of the race or finished after they picked up the carpet with the timer, which was, literally, the second after I crossed.  The guy was actually picking it up when Yuyi and I were approaching.  But, seeing us, he called us over and said "step on it!".  So, we did and there you go.  

But, I finished what I had started six months earlier when I first saw the flier advertising training with the AIDS Marathon team.  I guess that is what matters; sticking to it.  That cheesy ad "Just Do It"?  Yeah.  That's me.  :)

I think it's time to dust off the old running shoes and set a new goal.  

2014 will be the year that I reclaim my badassedness.

You can bet on that.

Monday, May 6, 2013


I am no good at eulogizing.  Sure, I can probably write an okay one, but getting up and actually speaking through my sadness is virtually impossible for me.  I choke up over commercials and baseball games.  To speak of love and loss at a time when I am experiencing both so vividly would be impossible for me.  I know.  I've tried it.  It's not pretty.

When my father passed away, I wrote down a few heartfelt lines.  We had a rocky relationship that was just turning around when he left me for good.  That horrible feeling of guilt and grief and regret and FOREVER weighed heavily on me and still does.  

So, I wrote a few lines.  In my head, they sounded exactly as I meant them; exactly as I wanted to say them to him, ALIVE.  Instead, the funeral director butchered them and I added another regret:  not just saying it to him when he was able to hear me.  

So now, I speak them to the wind, to the air in my living
room, to a cat who is looking at me as if she understands.  I speak them to a mirror image that bears a resemblance to his tired face.  I speak them as a prayer, though I do not pray; not really.

I had a chance to give a eulogy this past week and I did not.  Afraid the words wouldn't come; afraid they would, but with them, tears.  I was afraid to not do her life justice.  I was afraid that maybe I didn't know her as well as I could have.  

I think she would have understood.

My mom wrote a beautiful and informative piece for her obituary:

My grandmother died eight days ago.  She died as she lived, without much fanfare and quietly, dignified, she left us.

It was sudden for us.  Maybe it seems strange to say that a 90 year old woman dying was a shock, but it was.  She hadn't been sick for long, she hadn't been in the hospital more than four days when we got the call.  Her voice is still on my answering machine.  It makes me desperately sad and forever grateful to technology in equal parts.  I have guilt over how quickly (or not) I returned the call; probably not quickly enough for a lonely old woman reaching out to her oldest grandchild.

She really loved to talk on the phone in her later years.

I have to admit that I sometimes dreaded those conversations.  I dreaded the talk about the weather, the small talk, her forgetfulness.  I hated the awkward silences and her talk of aging and slowing down.  I didn't want to be reminded that she wouldn't be with us forever.  

Sometimes, though, we would have long, deep conversations about life.  I loved those, however rare they were.  She really got me in ways that many others did not.  

She understood my longing to be closer to home, because she had moved away from hers and always longed to go back.  She knew what it felt like to be a young mom with no real friends in your husband's neighborhood, not yours.  She knew how lonely it felt.

She knew that pink was my color even as I railed and objected whenever she bought me something to wear.  Sullen adolescents do not wear pink, especially tom-boyish ones.  I got mad at her for what I perceived as her not "getting" who I really was.  Now, I seek out pink, and sure enough, it looks good on me.  She was right, of course.

I can't imagine it was easy for her to have me as her first grandchild.  I came as a package deal with my mom when my step dad (hereafter referred to as "Dad") married her when I was four.  Sure, I was blond and cute and could have passed for his daughter anyway, but I wasn't and that must have been hard, at least at first.

She was never demonstrative or overly affectionate, but that was just her way.  She didn't dole out "I love yous".  She had her way of letting you know, by listening and quietly observing and teaching.  She never made me feel less than, even when my sister and brother came along.  

So, I write this to remember, to share her, to celebrate the wonderful person she was.  Rest in peace, Grams.  I'll miss you forever and I will always think of you when I see pansies.