Monday, December 30, 2013

Money Doesn't Buy Happiness But Neither Does a Foreclosure Notice

I am not poor.  I have a roof over my head (as long as I can stay on top of the sky-high mortgage for my cosy, three bed, one bath ranch), I have warm clothes, I have food, I have my basic needs covered.  My furnace is running, which is a good thing since it is nine degrees outside.  I contributed to charities this year and bought birthday and Christmas gifts. I even have cable and WiFi, which is how I am able to write this, today.  Of course, if I had no WiFi, or laptop, I could always go to my local library to use their computers.  It would be inconvenient, but obviously, doable.  

This is what I want to talk about today; the inconvenience of being in a less than ideal money situation.  

My family and I live paycheck to paycheck.  We put away a few dollars every week for a rainy day, but our little savings would not do much to save us from financial ruin.  
It's something, enough to spring for a part for the ever-failing dryer, or to pay an unexpected expense; provided it was a relatively small one.  It won't cover my husband missing a few days of work if he caught the flu, though.  My husband is in a union and his salary is very good, but I would love to talk to the geniuses who decided not to negotiate for sick or vacation pay or even holiday pay (hello?  Christmas and New Year's?).  

In an ideal world, we would figure out the cost of those days off (five major unpaid holidays, two weeks of vacation and another cushion of five days for illness) and we would come up with an amount in the neighborhood of $5000.  Saving for that would mean putting aside $100 per week.  Putting aside another twenty per week for unexpected costs puts our minimum ideal savings plan at $120 per week.  Some weeks we have it, some weeks we don't, for reasons I illustrated earlier.

The problem with this is that often times on the lean weeks we need to borrow from the fat weeks to get through.  What winds up happening is that we never really save anything.  We usually get a decent tax refund and a shrewd financial planner would probably tell us to put that money aside.  That would be great, if at some point we didn't need a new washer/dryer/exhaust system for the car/roof/windows... you get the picture.  

The vicious cycle that we live in is that we can never hold onto a chunk of money for very long.  It's not that we blow it on fancy clothes or purses or shoes or vacations (ha!), it's that it gets pissed away on stuff that has waited too long to ignore.

This is where the inconvenience part really comes into play.  If we had more money, we might be able to look for sales on things, so that we can buy them for less instead of buying them RIGHT! NOW! for whatever cost, because it went bad three days ago and we can't live without it for much longer.  It would mean replacing our roof before it starts leaking and the damage drives up the cost.  It might mean never having to pay late fees.  It also might mean that our credit would be better since we wouldn't be late paying bills.  Our mortgage company couldn't charge us all the fees involved with paying late.  An extra sixty here and thirty there, really adds up.  If our credit was better, we could also negotiate a better rate, instead of the 6.75% we are paying now.  

Even with all of this, I haven't even gotten to the worst part:  the stress that comes from worry.  If all I ever had to worry about was money, I guess I would be okay.  I'm okay anyway and of course, there is more to my worry than the balance in my checking account.  Having had my middle child go through open heart surgery twice in his young life, I can assure you that when it comes right down to it, when your loved ones are safe and healthy, money seems like a mere nuisance.

You could ask me why I don't work.  I mean, I did work full time for about three years after my kids were in school full time.  The reasons for my not working now are as simple as no one I want to work for wants to hire me and as complex as my availability.  The bottom line is that I want to be home when my kids walk through the door from school.  Working around that is challenging.  You might scoff and grumble that it's my own fault.  I am in a mess of my own making.  

You would be right.  

I take full responsibility for not earning an income.  I also know that when I take my kids to the movies or bowling or out for a cheap bite, I probably can't afford it.  I do it anyway.  When you don't have any family around, weekends present a challenge.  Movies fill the time that a big family dinner would in my husband's or my past.  Times change.  It's the same reason I don't let the cable lapse.  

Which brings me to the reason for this post. 

Here I am, with my kids on winter break and they shut off the cable and WiFi.
I have a choice:  Put what little cash I have left in the bank so that I can pay the bill and have it turned back on, or have a tiny bit of money and wait it out until Friday, when DH gets paid.  

Since I have enough food and crock pot recipes to get us through the week, I chose to turn the cable (and phone and WiFi) back on.  The prospect of being without, with single digit temps outside, for the last week of Christmas vacation was bleak, to say the least.  This way, at least we can use our computer, watch some movies and if friends call to invite us somewhere, they will get through, and not receive a vague message about our phone not "accepting calls" (code for:  These deadbeats haven't paid us!).

I know that I am one of the lucky ones.  I am not writing this to complain, at least, that is not my primary motivation.  I am mostly writing this so that I can see it written out so I can make it better.  If I can figure out how to make money less of an issue in the coming year, maybe I can move on to bigger and better things.  

I know that there are parts of the problem that are out of my control.  It's about taking what IS in my control and fixing it for the better.  There is no better time than a new page on the calendar to start.

Friday, December 27, 2013

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!

Thursday, December 19, 2013

What the duck?

I have never watched Duck Dynasty, apart from catching the commercials for a few seconds as I changed channels.  I thought it was amusing that guys like "that" were so popular, but I kind of chalked it up to the train wreck mentality that seems to have taken over popular television.  I thought it was a little weird when I saw Duck Dynasty pj's in the kids' department, but again, whatever.  I didn't pay much attention.

I figured they were harmless.

After the brouhaha that has erupted over the remarks that Phil Robertson (yeah, I had no idea who that was, either) made in an interview, A&E suspended him.  Read or watch his remarks here.

While his musings are hateful and repugnant, I am less offended by them then by the cries from his supporters saying that his First Amendment rights were violated.  Um, what?  I am no Constitutional expert, but I am pretty sure there is nothing in the First Amendment that says you can say whatever you want in an interview without being fired by the television station you work for.  I could be wrong.

A&E is perfectly within their rights to suspend him over things he says if they feel that they reflect poorly on their station.  Maybe they should have given more thought to their programming ahead of time, but that is neither here nor there.  You can get fired from ANY job if you publicly say something potentially damaging to your employer.

And guess what, America?  Being a homophobe DOES reflect poorly and it DOES damage A&E's reputation with a majority of their audience.  Most people don't tolerate hate speech very well.

Even more offensive are the supporters saying how Godly he is for his views; how sad that he is being persecuted for following the teachings of the Bible.  

Again, what!?!?

How, pray tell, is it "Godly" to spew hate?  As with the Constitution, I am no expert in translating the Bible, but I do know that there is enough conflicting jibberish wisdom in there to contradict any notion that "God hates fags" (to use a catchy phrase from one of the Westboro Baptist Churches favorite signs).

I logged into Twitter just before starting this post and typed in Phil Robertson, which was trending.  Since then, about thirty minutes ago, there have been 352 tweets (and counting) with his name in them.  Shockingly, and to my point of view, scarily, many of these SUPPORT him.  Some are just in support of his right to say whatever he wants, which I would also agree with, but many are just to the right of seriously coo coo crazy.

Unsurprisingly, Sarah Palin has come out here to defend him, blasting A&E for their "attack on his First Amendment rights".  Bobby Jindal and Ted Cruz also tweeted about it.  Yawn.
I mean, these guys need to pander to the scary to get votes, so I take what they say with a grain of salt.

It's the tweets by the "regular" people that really scare me;  the ones that think this is all a conspiracy to distract from Obamacare.  The ones that are trying to make a martyr out of this grizzled duck hunter for his racist and homophobic views are terrifying.  "He's being persecuted for being godly" shouts one.  "Thank you for standing up for your beliefs" says another.


I will support anyone's right to say whatever it is they want, but (and this is a BIG BUT) if you are spreading hate, you'd better be ready to take the heat.  I don't tolerate speech that could potentially cause harm to anyone and I will let you know it.  If a company like A&E feels your words could damage them in any way, of course it is in their rights to stop giving you a platform.  In taking away the ignorant soapbox that this guy found for himself, A&E is sticking up for tolerance, that is all.  

I can only hope that the immediate and loud voice that the LGBT community used to shut him down will join those that come to the aid of individuals with intellectual disabilities.  People with developmental delays seem to be the last stand for hate speech.  I have your backs, now please have mine and my kid's.  If you won't tolerate it for yourself, or your community, PLEASE don't tolerate it for others. 

798 tweets (and counting)

Wednesday, December 18, 2013


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 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.

Saturday, December 14, 2013


Recently, a friend of mine made an offhand comment about some of the negative things that I had posted on Facebook.  I was a bit taken aback, mostly because over the last several (probably six or so) months, I have been really striving to only post positive things.  The only exception to this rule is that if I post something ugly, or horrible or sad, I won't just post it with a sad face :( ; it will be something that I am actively working on changing.

For example, when I post about the plight of Russian orphans with Down syndrome, it's not to boo hoo about it (though, it does make me cry), it's to call attention to something that I am actively working on changing.  Change takes time.  Change takes outreach and noise.  Change takes reaching out to people who speak different languages.  Change means shining a light on perceived "norms" and asking questions and challenging individuals to look at things differently.

Facebook has it's issues, and being a huge time waster is one of the biggest; so in between posting memes of funny cats and hilarious "Fifty Shades of Grey" reviews, I want to spend some time doing something good, even if it doesn't appeal to everyone.

I mean, I get it.  The world is effed up.  There is a ton of stuff to bring us down; crazy world leaders, environmental degradation, extinction of beautiful animals, children in danger...the list is endless.  If you let yourself get sucked into all the horror, it's hard to feel positive about anything.  I mean, why bother?  It's so easy to be consumed by it all and to feel like whatever good you can do will be swallowed up by the rest of the crap.  Maybe it's best to just focus on the good things and ignore the rest.

Except, I can't.

I mean sure, I love cute pictures of babies (here) and animals (here).  I love videos that help restore my faith in humanity (like this) and (this) and (this).  I KNOW that there are more good people than bad and I KNOW that there are so many individuals hard at work, changing things for the better, in small ways and large.  

But, the bad stuff is there and it needs facing to keep it in check.  

Every day, every minute, I have a choice.  I can ignore the bad, stick my fingers in my ears and say "la la la, I can't hear you" and continue playing Scrabble, or I can take a deep breath, see what issues feel pressing at the moment and dive in.  It's constant battle between the two.  Sometimes, the issues are so absolutely soul crushing that I need to walk away for an hour or a day or a week before picking up the thread again.

Sometimes, I am so struck by the hatred (this guy), that I feel paralyzed and it takes me a few days to formulate a plan of defense.  I was ready to begin writing about the Michael Laws' of the world, when my friend posted this.

My first reaction was "god damn it.  I can't deal with every slight, every single infraction, every joke made at the expense of kids like mine" and I played some Scrabble and scrolled and tried to formulate the blog post that was percolating along with the coffee and watched the snow fall fast outside my window.  

My second reaction was "god damn it!  I have to email the guy!" and I did.  This is what I wrote: 


I get that the onion is satirical and my sarcasm muscle is usually sore from overuse. But, kids should be off limits.  

Babies with Down syndrome are still, in 2013, routinely sent to filthy orphanages to rot in Russia.  Children with Down syndrome in this country still have to fight to be included in school, in sports and in a society that too often does not want to "deal" with them.

My kid and children like him are not broken gifts.  They are cherished members of their families and their communities because I and many parents like me have fought for years against prejudice.  

Please don't make this job harder.

It took me all of five minutes and it felt good hitting "send".  I supported the friend who posted it first and supported my kid in NOT ignoring it.

I'm not saying that I will jump on every bandwagon.  There are only so many hours in the day that I can tweet celebrities who think calling people "retards" is still honky dory.  There are only so many items that I can focus my attention on before I become pulled in too many directions.  

The only things that keep my going are the fact that I am trying, in spite of the overwhelming-ness of it all, to make the world a more welcoming place for my children and that I am not alone in my quest.  

Alone, I would hardly make a ripple in the vast ocean of insulting, unfunny and downright dangerous debris that I wade through.  Together, we make waves.  From the tiniest splash made the first time a parent kept their kid home instead of placing them in an institution, to the parent whose kids are going to college and driving and getting married, we are making our presence known.  

You feel that wave?  That's us pushing back.

Tuesday, November 26, 2013

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.  


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.

Thursday, November 21, 2013


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? 

Monday, November 18, 2013

My Reaction to the Article "The Preventable Death of Ethan Saylor" by Stephen Greenspan, Ph.D.

Here is the link so you can read it for yourself.

It has been shared many times since it came out last week.  I've seen it on national Down syndrome groups pages and on some friends', as well.  All I can wonder is:  why?  Are we so starved for press in the I/D community that we will cling to any scrap that blows our way?

Let me take a step back.  I am glad that the horrific, tragic, TOTALLY PREVENTABLE death of Ethan Saylor is getting more and more press.  I am glad it has not gone away.  I am glad that others have taken some of the pressure off his family for getting their story told; but this?  This is more victim blaming and there has been plenty of that, already.  It is a clinical summation made up of sketchy details and inferences.  

The reference to Ethan's IQ makes me want to climb through cyber space and throttle this guy.  Who cares what his IQ was?  For one thing, IQ tests for people with Down syndrome are not terribly accurate, especially when the tests were done years ago.  And even if 40 IS an accurate IQ, who cares? Seriously?  Is there in IQ threshold for watching movies?  If so, what is it?  Is no other measure taken into consideration?  

"I would have thought such a movie beyond the comprehension level of someone with Ethan’s IQ level, but presumably he enjoyed the non-stop nature of the action."  says Dr. Greenspan.   

Again, seriously?  Dr. Greenspan, with his many, many years of research and writing about intellectual disability should know very well that typically, a person with Down syndrome's receptive intelligence is much, much stronger than their ability to demonstrate their knowledge.  So, just because Ethan would not necessarily be able to talk at great length about what it was he found so fascinating about the movie, he did enjoy it and he would have been able to discuss it on some level if events had not unfolded the way they had.  Truthfully, none of that matters.  It's none of the doctor's business why Ethan saw that particular movie.  

Dr. Greenspan also writes about Ethan's weight being a factor in his death. This is pure nonsense.  Anyone who has a crushed larynx will die from it without immediate medical attention; period.  You cannot breathe when your airway is blocked, whatever your weight.  

Dr.  Greenspan blames Ethan for lashing out at the police officers.  These officers WERE NOT IN UNIFORM!  If they had been, maybe things would have been different.  The officers were moonlighting as security guards.  How was Ethan to know that they were really cops?  He was trying to get more money, via his phone, for another ticket.  In Ethan's mind, he was complying with the request that he purchase another ticket.  Whether that was logical or not, is beside the point.  In the few minutes the officers and management could have waited, without harming Ethan, his mom would have arrived, he could have had a new ticket, or he could have left.  They refused to give him the opportunity to make the situation right.  I find that indefensible.  

Even without all of that, even if the officers were uniformed and Ethan was hitting and kicking (which I have not read that he was), what does it imply?  That feeling threatened (with good reason, apparently) is a crime punishable by death?  I know, I know, they didn't MEAN to kill him; but they did.

"Whatever the tolerance level that police departments have for using potentially deadly force (and apparently the tolerance level is fairly high in the Frederick County Sherrif’s department), one would like to think that are other departments and officers, including within the Frederick department, who would view the behavior of the three officers in this case as unprofessional. It was unprofessional because police officers, along with other professionals (such as therapists), are paid to accept a certain amount of abuse without responding in kind. They are also being paid to recognize when a subject is in an unstable state, and to practice responses intended to calm rather than inflame. Unfortunately, neither of those hallmarks of professionalism were demonstrated in this case."  (emphasis mine).

I definitely think he has a point there.

The last part of the article gets to the heart of the matter, but doesn't tell us HOW to change things.  We certainly need the how.

 If there is any lesson to be learned from this tragic case, it is that the first instinct of first responders, as well as direct care staff, when dealing with immature behavior exhibited by brain-impaired people like Ethan Saylor, is tolerance combined with gentle insistence involving negotiation, both done in a spirit of love and attempt to understand the individual and help him or her to regain self-control.

On the last point, the doctor and I agree, but until we, as a society, have a better level of tolerance towards different communication styles, appearances and abilities, things like this will continue to occur.  We blame IQ, or cognition, when really what is to blame is prejudice and intolerance for difference.  How do we change minds when it comes to those with intellectual differences?  When will this population be recognized as having equal rights under the law, when time and time again, we are shown that the rules are applied differently when you have a disability as seen here and here?    

I realize that some will see this post as trying to have it both ways.  Maybe I am, but I don't think so.  I don't think it is wrong to suggest that waiting a few extra seconds before you decide to "subdue" someone when you SEE they have an obvious disability is unfair to the "typical" population.  I think it is compassionate.  

I am sure that Dr. Greenspan means well.  I'm just not sure that his post has helped the cause of getting justice for Ethan.

Friday, November 8, 2013

Why the R-Word Sucks with guest blogger, Nidhip Mehta

This post is a culmination of spending years trying to convey my feelings.  You can read this year's r-word campaign posts here and here.  I have written at least 427 other posts on the subject over the last 14+ years, but I will spare you those.  This latest post came from hearing about Kat Von D and her lipstick line at Sephora.  Long story short, they collectively decided that naming a lipstick "Celebutard" was a hilarious idea.  

Celebutard - from the Urban Dictionary:  

A famous stupid person. Typically refers to the current crop of vapid celebrities.

Similar, but not exactly the same as Celebutante: 

A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."

It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous.  But, whatever. You can read more about that here.  

Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade.  It was a victory, but a hollow one.  I am glad that as a community we were able to mobilize and have our voices heard.  I am troubled by the fact that it's a battle we have to keep waging.  

Here's another great post from a friend, here.

In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate.  He posed a few, well thought out questions asking why the r-word is so offensive.  He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side.  Again, I was getting nowhere and with someone who liked me and actually cared about my feelings!  How was I ever going to get the point across to anyone else?  

I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere.  To top it all off, I was going to quite possibly lose an old friend in the process.  I did a little soul searching and then I wrote a note to Nidhip that said:  

Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.
I'd really like to write some more about it. I know I won't convince everyone, or maybe even you, but I would like to try and engage in healthy debate. As you can tell, debate is not easy for me. Arguing is fine if I don't truly care about the answer, but when I do...oh boy. I am all emotion. I know logically that a word should not hold so much weight, but emotionally, it does, it really does.
I'd like to try and work through this some more. Would you be okay with me putting your questions in a blog post and answering them? Or would you want to write something different? Or go back and forth? I think it could be a really good thing. If you don't want to add anymore, I understand, but if you would allow me to use your questions, I'd be grateful. Think about it.
And being the good guy that he is, he said this:
Hey, first of all, I just want to say I'm sorry again. I know with hindsight, you're thanking me, but I really should've gauged the situation better before opening up something which clearly has an emotional resonance. You're right, I tried to intellectualize something which, at its heart, is emotional. But I honestly think that it helps to do that when you're trying to create awareness or change minds. Which is why I was getting at you for simply saying that it shouldn't happen because it makes people angry. As you know, progressive thinkers like us do a lot of things that make other people angry, but that shouldn't stop us from doing it. Like wanting that anybody can marry anybody else, regardless of what the Bible says. That sure makes a ton of people angry, but I'm gonna go on wanting it.
Anyway, like I said last night, my questions came from a point of inquiry, not argument. I genuinely wanted to hear your point of view and well... I got it, I guess.
Sure, I'd be okay with my questions in your blog... after all, that was my point in bringing it up... to initiate discussion. But I really don't want to get anyone upset, let alone you. You are a great person and I admire you a great deal, but I want to respect your limits and tolerance as well.
And thanks for reaching out to me this morning. I really felt bad about upsetting you and regretted bringing it up. I admire that you're willing to put that aside and engage me again. That says a lot about you.
So, here is Nidhip's query. I will break it into parts in order to address different pieces of the issue; but first, here it is in it's entirety:

Ok, so my question is essentially this:
I sympathize with the feeling of being offended by a word or phrase. Ever since I learned that the R-word is offensive to some (particularly to those who have family members that are intellectually disabled), I stopped using it. I don't even use it when those people are not around, and I try to remind others when they use it. Also, I understand the negative connotation when the word is used to describe someone with Downs Syndrome or autism spectrum. It's really not appropriate, and it's not such a big thing to simply use another word.
What I don't completely understand is when the word is used outside of that context; when the intent has been changed from the original meaning. This happens in language. It happened with the words "moron" or "idiot" or "stupid", which were all used at one point as clinical descriptions of people with intellectual disabilities. These days, no one bats an eye or hesitates to use these words. Heck, even people who have family or friends with intellectual disabilities use these words, which a century ago had the same meaning and connotation as the R-word.
Is it not possible to divorce the word from its meaning? Can the perception of those who use the word be more nuanced? Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
I'm not exactly saying that people should simply ignore it when people use the R-word, but that perhaps they should react in accordance with the intent in which the word was used, and not simply react from pure emotion.
I also think that in order to make people better understand why they should not use the R-word, the reason given should be more than "it makes me angry" or "you'll never understand unless it happens to you". I think these don't help the cause, primarily because unless the person involved is a friend or relative, no one really cares whether something they say makes some anonymous person angry. I believe in many things that make people angry, like feeling that gays should be able to marry or that all people should have access to affordable (or free) health care. The fact that this makes some people angry does not bother me in the least; it's a fundamental disagreement. So, I guess that in order to better understand the issue, I'd prefer to see a more intellectual rationalization for not using the word, as opposed to an emotional one.
Of course, what I prefer doesn't always matter. There may not be, after all, an intellectual rationalization. Maybe it should suffice that enough people (whatever that critical mass is) find it offensive. But the intellectual part of me wants to know where to draw the line, because it seems very fuzzy and, to be honest, hypocritical. Especially when I see the words "moron" and "stupid" being used all the time. I don't know, perhaps it simply has to do with the amount time that passes for a word to fully change its meaning. It's difficult to parse, unfortunately.
Again, I want to reiterate that if the word offends people who I like and admire and want to stay friends with, that's good enough for me. But it may not be good enough for everyone.

My response: 

I think there are essentially three parts to this:

  1. Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
  2. Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
  3. Is there a way to intellectually rationalize why it is wrong?

Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?

First, some people are bothered by the words idiot and moron and imbecile because of their historical significance to people with intellectual disabilities. For myself, I feel that those words have evolved to a point that when someone says any one of them, a picture of a kid like mine does not pop into their heads. I haven't seen any offensive memes using a picture of a kid with Down syndrome and the word "idiot"; but I have seen plenty with the word "retard". That makes them different, as far as I'm concerned. Maybe it's the role of social media that makes this word different (for me) from the rest. It certainly plays a part.
Secondly, I don't wish to drag up every old word used in reference to people with i/d. I feel they have run their course, history has moved on and so should we. The difference with "retard" is that it IS in common use these days and because of that, it keeps anyone who could be called "retarded" by a doctor (even though it is going away in the medical field) apart from everyone else. It makes them the "other", not like us, not worth worrying about offending, maybe, not even quite human.
Thirdly, though I could wait for this word to become innocuous, I don't want to. I want to stand up now and say that it matters to me and it matters to my family and many, many families like mine.  Why should my kid, who has been called a retard more times than I can count, have to hear that word in any form (including added "tard" to the end of other words)?  

Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity?  I see it as a matter of simple humanity.  Most people don't want to hurt people's feelings, even people they don't know.  I think educating those who truly don't realize that their words are hurtful is important.  It's not about getting angry (Nidhip:  you seem to only see my anger and not my hurt.  I'm wondering why?), though I do get angry about it.  When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment.  I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic.  Some (many) still use the word, but at least I have planted the seed.  If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.

The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt.  People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with.  Frankly, I think much of their anger is misplaced.  But hurt?  I don't want to hurt people or be hurt.  Knowing that the r-word can be hurtful should be enough.

While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts.  It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis.  Would you want any part of what makes you YOU be a slur? 

Is there a way to intellectually rationalize why it is wrong?

I've said that to disability advocates, this is the N-word. Do we use the N-word in any form?  No.  Because most reasonable people get that any form of it is degrading and wrong.  They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly.  But, "you're such a retard"  is fine.  Why?  What is the difference?  

The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy.  You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.

This happens today.  

Yes, kids with i/d learn differently than other kids.  And typical kids learn differently from each other.  With creativity, love and support, everyone wins and everyone learns more.  There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello?  American south in the 1960's?), or ability (today, all over the world).

My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society.  Both words say "you are different, you are not worthy, you are not accepted".  If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities.  The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized.  Like African American, women and gay people before them, people with disabilities are calling for equal treatment.  Eliminating slurs against them must be a part of that movement.

Tuesday, November 5, 2013

I Love Teenagers

Teenagers get a bad rap.

Yes, they are moody and smelly and occasionally inconsiderate. They cause a disproportionate amount of car accidents for a variety of reasons, not limited to the fact that they don't get that death is a real thing that could happen to them.

I have recently noticed a lot of vitriol on Facebook surrounding the 13-19 year old set, to the point where it actually hurts my heart. Comments from a (hopefully) non-parent after a post about a father and son having issues at a restaurant:
an ambulance would need to be called when I finished whupping him into a pretzel....
Um, really? For talking back to his dad? Seriously? With no knowledge of what happened leading up to the incident, this poster has decided that serious bodily harm is the way to go. I find that really disturbing.  And she wasn't the only one.  There was a lot of horribly misplaced anger throughout.  I hope they were all perfect growing up, or they probably got the shit kicked out of them for rolling their eyes.  

In another post, a mother screams about the "fucking teenagers" that speed down her street.  I mean, I get it.  She was upset about her young daughter running out of the house and into the street.  But, saying it that way makes it sound like a negative epithet.  It sounds really hateful.  

If I yelled about the speeding Jesus Freaks that live down the street from us, would it sound hateful?  Probably.  It would definitely reflect my prejudice.  It would also be true.  They are the ones I am constantly yelling at when they fly through the neighborhood.  And they have kids.  I can't wait until they can drive.  Grrr...  

Isn't it hard enough to be a teenager without everyone hating you?  I can't help but wonder if some of the anger these kids exhibit isn't a direct result of feeling it from other people.

I'm not saying that as a group, they are all wonderful and sweet and odor free.  They absolutely are not. Having three teen-aged boys has introduced me to world of smells that I had not encountered outside a public toilet/perfume counter.  The combination of feet, unwashed sheets and Axxe is an olfactory nightmare.  They have zits and terrible eating habits and their manners are...questionable.

They are also the same babies that I nursed and rocked and sang to and clapped for.  I still clap for them.  And I still cry over their hurts.    Their Twos were not so terrible and even when they were, they were so stinkin' cute.  

Yes, they are harder to love when they roll their eyes and stomp out of the room and say hurtful things.  Isn't that a part of being a good parent?  Reaching down and finding the love?  Reminding them that they are loved no matter what?  Like the terrible twos before, they are finding their way in the world.  They are learning new things and they are frustrated with what they are still trying understand.  They really don't know their place in the world, yet.  The difference is that no one is smiling over their tantrums now.  No one really thinks they are cute; yet they are the same vulnerable kids they have always been.

If you are a parent, realize that your sweet little ones won't always be that way.  Someday, that precious baby will look you in the eye and tell you she hates you and she'll mean it.  And it will hurt.  And you will still love her.  And hopefully, she will remember that.  You will battle, you will take away privileges, you will be deemed "totally unfair" and you will all learn lessons along the way.  

If you are not a parent, please remember that you were a little jerk sometimes too and yet, you are still alive and hopefully, not as much of a jerk today.

Home should be a soft place to land and if that means bearing the brunt of teen-aged angst and frustration, then so be it.  I dished it out and I can take it.  This is where the rubber meets the road.  If we all survive mostly unscathed, we have done our jobs well.

Just some (junk food) for thought.

Tuesday, October 22, 2013

De-cluttering My Soul

I've been thinking about what it means to be me.  I'm wondering if I met me, what my first impression would be.  Fat?  Chip on her shoulder?  Nice teeth?  Well spoken, but salty?  Funny?  I wonder if hypothetical me would get past fat and chip on her shoulder to see the truth.  The truth is, that I have a hard exterior made up of guilt, sadness, fear, anger and confusion covered in a thin veneer of sarcasm.  With a little pressure, that shell yields to a gooey center of love, hope and dreams.  I'm basically a Cadbury Cream Egg.  No wonder my husband likes me.  I need that shell to protect what is really worth protecting.  You can have my anger and my sarcasm, but my dreams?  Not without a fight.  

The truth is, that up until just a few days ago, fat was all I was seeing. You'd think since having my last baby 13 years ago, I would be used to being fat, but I'm not.  There's fat and there's FAT.  Right now, I am at FAT and I'd like to get down to fat before spring comes and I can start training for some kind of crazy physical feat; like a triathlon or another marathon (read my condensed marathon story here ).

More about those plans later.

So, up until a few days ago, I was hyper-focused on what was going on with my exterior, to the point that it was exhausting.  I still had obligations to family, friends and the various committees I am involved with, but doing even the most basic thing felt monumentally hard.  I blame it on being heavier than ever before and being just a tiny bit depressed about it.  You know that things are not going well when brushing your teeth seems like a real chore; like something you need to cross off a list.  Forget the actual lists I have.  That shit is on the back burner.  

Now, the list has only one item:  Be the person I was meant to be.

That's it.  Of course, there are sub-headers and lines a through z.  There's a lot that goes into being that person.  But, the way to get there is simple:  Do the things that move me towards a goal and don't do things that move me away.  For example:  I want to complete a big, physically demanding goal by the end of next year.  In order for me to do that, I have to be physically and emotionally ready.  It will take many weeks, many smaller goals and many setbacks to achieve it, so I need to give it a good long time to be accomplished.   

I am not very patient and that has been a big part of what has kept me FAT.  It took too long to see results and I got mad and punished myself by gaining more weight.  It's a long and complicated journey, this one with food.  Everything I think about myself plays into how I treat my temple (it's a god damned temple, you hear me?!?  It just needs some slight retrofitting and remodeling and it will be a thing of beauty for years to come).  
This journey is not about being hot again.  That ship has sailed.  And you know what?  I think that for the first time ever, I don't care.  I was talking to my sister the other day about this.  I said something to the effect of being invisible; that I have gotten to the point where I could grocery shop wearing a clown wig and no one would notice because I am a chunky, middle aged mom. 

Somehow, I've gotten to the point where no one outside my circle of family and friends really sees me.  Sometimes, I wonder if they even see me; me how I really am.  I think my husband usually sees the girl who met him at the end of the aisle eighteen years ago.  I can't keep up with that girl in a race today, but I sure am more thoughtful and more compassionate than she was.  I wonder what my kids see.  Do they judge my weight?  It makes me think of my maternal grandmother, whom I loved so much, and who passed away this summer.  She was heavy most of the years I knew her and I loved her.  My grandfather loved her.  They were happy and laughed and had fun, even though she was bothered by the weight and was always trying some kind of weird diet.  I hope that at some point she stopped measuring her worth in pounds and more in love; that which she gave and that which she received.  I wonder what she would tell me now about wasting time on things that don't ultimately matter.

Speaking of my grandmother:  I am also realizing that I have not fully processed the losses of this past summer.  I lost three significant family members, including both of my grandmothers and Oliver; a boy I never met in person, but learned to love just the same.  I've tried to channel my feelings into advocacy and writing and doing things that make my existence on this planet mean something, but at some point, I just need to sit with my grief.  I've been catching myself from falling into that vast, unwelcome valley, but maybe it is time to explore it a little.  We all have to walk through this valley time and time again as we age.  It should be like going home, but instead, it feels like an endless mire of tears and silence.  It's murky and dark and I am afraid.

I don't need to fill that valley with food, or approval, or laughs.  I only need to sit there and see that I can survive on my own.  All I need is a hanky and a hug when I emerge.

And to the people (they seem to be coming out of the woodwork) who want me to find Jesus/go into business with them/join their cult I want to say thank you for making me see that I am the only one who can fix me.  I think I am on the right track and I will burn your business card keep you in mind, but I need to step away right now.  I have enough crazy up in here, thanks.

So, the to do list:  Be the person I was meant to be 
     a) lose the weight
          1) make a list of achievable goals to meet the ultimate one
     b) sit with my grief
     c) start today