Heart Tale

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

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

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

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

Here is where the alarm bells started going off.

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

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

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

Waiting really sucks.

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

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

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

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

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

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

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

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

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

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

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

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

As I said before, waiting sucks.

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

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

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

Then, the waiting.  So much sucky waiting.

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

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

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

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

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

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

Shame On Us

Today is Robert Ethan Saylor's 27th birthday.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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!

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.

Yikes.

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)  https://twitter.com/search?q=%22Phil%20Robertson%22&src=tren

Hypothetical

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

Here is an excerpt from one of my favorite posts:

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

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

That line says it all.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Negative

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: 

Steve, 

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.