The Best Worst Day

I have heard it every March 31st since Owen was born.

Al;  "It was the best day of my life and the worst day of my life, rolled into one."

And every March 31st, I have disagreed.

I refuse to burden the day that Owen entered the world with the title, even in part, the worst.

No. It was not what I had expected. Nor was it easy.

I do admit, that once a year, I allow myself  to go back to that day, back to all the moments that made up that terrifical day.  I think I remember them all.

And with ten years distance from that morning, I am able to look at the events with a fair amount of emotional detachment, as if they happened to some other poor girl, long ago, in a land far far away.

When I do try, when I sift through all the difficult moments of that difficult day for a possible worst? A surprising one rises to the surface;

Al and I have left Owen in the hands of the med flight crew, the nurse having told me his slim chances of making it to Boston.

We are in the parking garage, walking up the ramp toward our car.

I see our backs. Heads hung low. Shoulders weighted. We're not speaking.

I'd given birth less than twelve hours before. I knew I should, but was unable to feel physical pain.

And emotional pain? Also somehow absent.

Empty I was. Body. Arms. Mind.

We got into our car and I turned to look at Owen's would be car seat.

Empty.

Yeah.

But that moment? That may have been the worst? Was only a wee speck of time.

Because only a few hours after that moment came the best thing I'd ever heard in my life; a surgeon's voice on the telephone telling me that Owen was alive.

Followed in a few hours by another best moment; seeing Owen alive.

And then there were many best days;

All the days that he was supposed to die and didn't.

The day he came off ECMO for good. The day I got to hold him.  The day he was allowed to breathe on his own. The day he left the ICU. The day he came home.

All bests.

And the bests kept on coming.

His first smile. First words. First signs. First hearing aids. First steps.

Best days ever.

I may have waited longer than most for his firsts. That only made them better.

Five years for his first real bites of food. Six years for his first day without needing a tube feed. Seven years for his first day with no feeding tube at all.

Few of the days have been easy, but that does not make them bad.

And not one of them has been the worst.

Now that I think about it? 

I've not yet had a worst day.

And all my bests? Are probably better than yours.

March 31, 2003.
Best. Day.

Thankfully Reconnected

I've never taken the kids to our town's big deal Thanksgiving Parade.  If I'd gone as a child I have no memory of it.

And considering where we live?  This is shameful of me.

The kids have had their heads stuffed with all things Thanksgiving, with emphasis on the Pilgrims and the first ever Thanksgiving.  They feel proud and special to have this  history in their back yard.

So we went.

With a few thousand other folks.

We found a patch of grass on the hill there on the left, ate some quesadillas (just like the Pilgrims did), and waited for the parade to start.

I offered up Thanks that the children were sufficiently excited as to ward off impatient whining.

I Thanked myself for not inflicting great bodily harm on the douchebag sitting behind Owen who thought it would be funny to sneak up behind said Deaf kid and throw his hood on his head. Seriously. Some ass hole did that.  I sweetly schooled him on what NOT to do to a Deaf person, while his embarrassed wife and kids listened intently.

And I wasn't at all surprised when a man stopped as he walked past, pointed at Owen and asked me in sign;

*Deaf?*

*Yes.*

*Sign?*

*Yes.*

He turned to Owen and signed some more,

*How old?*,  *Your name?*, *What grade?*  and so on.

I hadn't noticed the child with him until the man was signing his goodbye and nice to meet you.

I'd assumed the man was Deaf until he called after the child and the child turned around;

And I clapped my hands so hard I thought I'd sprained my wrist.

I knew this kid.

Years ago, when Owen was in preschool, just a baby, a new boy came to the program.

Niklaus came from the Czech Republic.  He had no hearing, no speech, and knew only a few Czech signs.

This beautiful little Deaf person had thick curls of blond hair almost to his rear end and the most intense icy blue eyes.

He thrived in his new signing environment and was using ASL signs within a week. 

The staff were amazed at his progress and Owen would talk about his friend Nikki often.

When Kindergarten started, Owen came home sad and told me that Nikki wasn't at his school anymore. He'd asked his teacher and all we knew was that he'd gone to a different school.

And we never saw or heard from him again.

Until last Saturday, sitting on the green, rubbing my sore wrist;

"I know you!  You're Niklaus!"

The father looked baffled as I frantically signed to Owen that this was his long lost friend Nikki.

When the information clicked into place, Owen's face exploded into joy. He'd remembered.

And after a few minutes, Nikki did too.

We spent the rest of the day with Nikki and his Dad Bryan.

The kids ran around the green, Owen checking in with me often to ask when Nikki could come to our house to play. 

Bryan and I chatted comfortably; he lives right in town, Nikki is mainstreamed in the public school, but still knows and uses sign.  He loves Karate. And books.  And superheros.  He plays the cello.

He has a hard time connecting with other kids, and could use a friend.

As luck would have it, Owen is in a similar boat.

So yesterday, the afternoon sailed by as the boys played in Nikki's room while Bryan filled me in on his fantastic voyage from the Czech republic.  An unbelievable, heartbreaking, and triumphant story of survival. 

Not unlike Owen's own tale.

I'm usually Thankful for the basic stuff this time of year; food, shelter, clothing, kids and family.

But this year I'm Thankfully indulging in the spectacle of these two boys, neither of whom should even be alive,  whom the Universe saw fit to bring back together.

On Kindergarten, Hangovers, And Hope.

A kindergarten classroom would be my last choice in which to spend a hung over morning. But at Bea's open house last month, there was desperate pleading for any parent with the desire and the time, to please volunteer in the class.

Other people's kids don't thrill me a bunch, I much prefer the over 80 crowd. And I can't say I wanted to give up one kid free weekday morning per week, but not wanting to seemed a poor excuse to not actually do it.

So I do. Wednesday mornings. Though yesterday, my post-election fog almost had me bailing, sending Bea to school with a note to her teacher claiming *sickness*.

Despite the headache and fogginess, I was feeling oddly energized and positive, given what had kept me up so late.

Tuesday had started out with yet another discussion with Bea and Owen of all things election;

Who is the President?

What is his job?

Who is the other guy?

No, they aren't actually going to be running alongside each other.

Who should we vote for Mommy?

"Well, I'm going to vote for the guy who wants everyone to love everyone. The guy who wants to help people. They guy who wants us to want to help people."

And many more questions over breakfast as we prepared to head to the high school down the street to vote. Trying to keep it simple for the five-year old, and utilizing newly obtained signs for the Deaf nine-year old.

Owen made me stop in the driveway as we were about to leave, ran into the house to fetch his encyclopedia of past presidents.

Bea became silent and appeared terrified as we made our way across the parking lot into the school;

"I'm scared. I don't want to talk to the President." So damn cute.

"Oh, I would LOVE to talk to him, but sadly he's not going to be here today."

They hovered over me while I took the sharpie to the ballot and filled in my ovals.

Then it was their turn.

How cool is my state?

The rest of our day was spent exercising our rights to get hair cuts, to eat great southwestern food, and to attend karate class.

The second the kids were tucked in, I assumed the position in the big living room chair, wielding remote control and iPhone, cross stitch project on lap, wine glass filled to brim, and election coverage on the TV.

I rather enjoyed the bumpy ride. Just ask the mostly empty wine bottle. The big one.

And then, just after 11pm, feeling more of a fun mix of relief and disbelief than of victory. And quite possibly a goofy grin.

Before I know it, I'm standing in a kindergarten classroom, cursing the flourescent light, wincing at the sound of the bell, wishing the little voices actually sounded little, as I perform my assigned tasks of cutting and folding and stapling.

Story time happens. Being the month of Thanksgiving, the focus is on family, and the book of the day visits all different kinds of families.

I find myself abandoning my cutting and turning my attention to the teacher as she reads. It went pretty much like this;

Some families have a Mommy and a Daddy. Some have only a Mommy or only a Daddy. Some families have step-parents and step-siblings.

And because I'm a dork, when she got to the next part?

Some families have two Mommies, and some have two Daddies.

I teared up.

I teared the fuck right up.

Because I know a boy in the class who has two Mommies. And not one kid on that rug thought anything of it. Not a hand raised to question, not a snicker or a giggle. A family is a family is a family. Love is love is love.

I know that this is a very small part of what Tuesday's decision means.

But in that classroom, surrounded by those kids who get to grow up with that understanding of love, I felt so stupidly hopeful.

And if things had taken a different turn on Tuesday?

I'd have been crying for a different reason.

Nuggets of Deaf Awareness

I'm not sure how I feel about Awareness campaigns.

That is a lie. 

I know exactly how I feel, I just don't want to share those feelings at this time as it happens to be Deaf Awareness Week and I've got a Deaf kid.

Over the past several mostly non-blogging months, there have been some bright shining moments of Awareness that are worth sharing and celebrating.

*******

Awkward teenage girl at movie ticket counter is now a bit more aware;

Me: "Three kids and an adult for Brave."

Her:  "Uhhh. OK."  Nervously; "I don't know if you're aware, but it is a captioned viewing. So the words will be on the screen. I hope that's not a problem."

Me:  Big smile. Right hand giving her thumb up. Left index finger pointing back and forth between Owen and his Deaf friend Jay;  "Deaf kids. Score!"

Her:  "Uhhhhh.  Ohhhkaaaay?"

*******

Old lady sitting next to me at pond requested the awareness;

After seeing/reading Brave, I took the kids for a swim.

The second we staked our claim on the perfect patch of sand, Owen and Jay bolted toward the water.

Me:  "DEAF KIDS!!!!"

The boys trudged back toward my outstretched hands.  Owen placed his hearing aids in one hand. Jay placed his cochlear implant processors in the other.

I signed my thanks and gave orders for being careful and polite and all the requisite pre swim jazz and sent them on their way.

I assumed there were numerous pairs of eyes pointed at me.  I chose to make contact with the old lady to my right.

She beamed at me and asked a zillion questions about the boys, the differences in their technology, their school, their language, and their lives in general.

And I believe we may have made her day.

*******

Hopefully Verizon guy will pass Awareness along;

As a beginning of school treat, I rented The Lorax on demand for Bea and Owen.

As the movie started, I fiddled with the remote and couldn't seem to get the captions to come on. Owen is getting anxious and whiny as I call Verizon to see what the problem is as we've always been able to get the captions to work.

The nice young man attempts to school me on the workings of the remote, I assure him that I know how to make the captions appear and nothing is working.

He then asks me if I'd noticed when I'd rented it, if it said that captioning was available for the movie, because as it turned out, they were NOT available for The Lorax.

I insisted there was no such information given, and it would be nice to have known that beforehand as I have a Deaf kid who is now in tears because he can't read his movie.

Nice young man goes on to explain that the children's movies aren't usually captioned, at which point I cut him off and politely (no really, I was polite) tell him that there are in fact children who are Deaf  and that they very much like movies. 

He apologizes profusely, assures me that he will mention it to someone, and passes me along to a customer service person who will refund my money.

My favorite part is when he transfers me I hear a recording saying that there is an unusual call volume and I will be waiting a long time for assistance.  He's still there and says;

"No. That's not cool. You're cutting in line."

Customer service person listens to my story, agrees that it should state if the movie is captioned or not, apologizes, and credits my account.

I then tell Owen that he won't be reading his movie and crank up the volume.

And then I check the main menu, where it SHOULD have clearly stated whether or not the movie was captioned.

It clearly stated that it was NOT.

*******

In which I am made aware of a very specific animal sound,

The county fair is a summer must.

As I walk the kids around, I'm on the alert for sounds that are and are not available to Owen.

The toothless carnies shouting demands that we throw money at their unwinnable games?  Owen is oblivious.

The scary shrieks and bangs in the Haunted House? He hears enough. Enough to be a brave big brother and see his little sister through.

The animals. 

Baby goats and their wee little bleats.  He leans in close and hears them.

Chickens.  He hears the clucking. He asks and is allowed to hold one.  And is so scared of the thing he nearly strangles it.

I see a group huddled around a pen.  I hear an odd grunting sound and peek over someones shoulder.

A large, really large tortoise.  I wonder if Owen can hear it. So I get his attention, sign to him that there is a huge turtle as he runs over to me.

Woman whose shoulder I had peered over is giving me a curious stare as I grab Owen and lift him up to see and hopefully hear the turtle.

I hadn't thought much of the look the woman gave me as I was too concerned with Owen getting the full turtle experience.

And now I am aware that people don't just give me weird looks because I'm signing to my kid.

They also give me weird looks when I hold my Deaf kid up so he can watch giant turtles have extremely loud sex.

*******

Bea is as aware as one can be;

Owen can barely hear Bea. 

The constant chatter of her high pitched voice is just not accessible to him.

Most of what she says, if he cares to know it, I have to repeat to him, or give him in sign.

I've been on a mission to make the two more self sufficient in their communication.  I'd love to remove myself from their equation.

So I encourage Bea to use the signs she knows.  Remind her to face him and to be aware of the noise level in the room that could interfere with his understanding.  And implore her to be patient when Owen asks her to repeat what she's said.

None of the above is going very well. As evidenced by this exchange as we were getting ready to go swimming;

Me; "Bea, do you have everything you need?"

Bea; "My orange towel!  It's upstairs!  I'll go get it!"

Owen; "What she said?"

Now. It is just a towel.  He's not been deprived of some important piece of information.  But it is these little incidental bits that he misses that make my brain scream 'No fair!'. So if he demands to know what his sister said, as insignificant as it may be, then he has the right to know it.

Me; "Bea. Tell Owen what you said, he missed it."

Bea; "No."

Me; "Tell him please, he wants to know. It isn't fair. Tell him please now."

Bea; "NO."

So on and so forth for far too long, but I am determined to make my point. 

Finally, I resort to threats of not going swimming;

"Bea. You're going to tell him what you said right?"

"No. I can't.  I didn't HEAR myself."

Aparently she is determined to make her own point.

Atta girl.


*******

Possibly more Deaf Awareness stuff later this week.

Summer 2012

Remember that summer when all I did was drag the kids to the;

Beach

And the pool,

And the pond?

And every time I dragged them to

The beach,

Or the pool,

Or the pond;

They'd be fighting and whining and complaining as I tried to pack all the necessities required for a day at

The beach

Or the pool,

Or the pond.

And somehow I'd manage to remember all the proper snacks and drinks and sunblock and bug spray and sand toys and boogie boards and goggles and masks and books and extra clothes and towels and five hundred other things.

And you'd think the children would sing my praises for such a feat.

They would not. But they would remind of that one forgotten thing and piss and moan about it all day.

You know how exhausting it is to referee Deaf kid and Hearing sister at the;

beach,

or the pool,

or the pond?

So. Very. Exhausting.

Which is why this day at the water park made me so damn happy.

Deaf Kids Signing At Water Park.

Remind me to tell you some day about our how our movie theater in town got all sorts of high tech stuff for Deaf folks, thus greatly enhancing Owen's moviegoing experience.

Also remind me to tell you about how badly I didn't want to correct Owen when he talked about his favorite movies;

Ice Age 4; Carnival of Death and PronounMan

How about that time, after a typically draining day at

the beach,

or the pool,

or the pond,

when the kids and I were sitting at the dinner table and they thought they'd rename themselves; Owen declared himeself Fart-O, Bea chose Stink-O, and both of them agreed I shall now be known as Wine-O.

Or how about the time the kids met their newest cousin?

Or all the times they got to do,

 this,

or this,

or this,

or this,

or this?

They are damn lucky kids.

I was lucky to do this a few times even.

And after a long summer day of frolicking at the beach or the pool or the pond, after hours of bickering and interpreting and intervening, if when we pulled into the driveway and the kids were fighting over who was going to get to the door first before the car had even stopped, wouldn't it have been hysterical if as soon as they slammed the car doors Al backed the car up and took off down the road leaving Bea and Owen crying in the driveway thinking we'd abandoned them?

Of course we would never do such a thing.

What kind of Awesome Parents monsters do you take us for?

Fuck You Friday! #SNRyan edition.

Fuck You Old Man,

I happen to love old people.  More than most people.

But ignorant assholes?  I can do without.

You with your hag wife and me with my kids.  The ONLY patrons at Moe's this afternoon.

They're fucking children. Do you really think they are going to arrive at the ice machine and NOT fight over whom fills their cup first?

And seeing as we were the ONLY people in the fucking place, did you have to try to squeeze through the two feet between said bickering kids and a fucking empty table?

Clearly going around the table wouldn't have been the wiser choice.

No.  You had to push your way through.  And get bumped by my kids, hence spilling your drink.

And proceed to stand there glaring unkindly at frightened Bea and Owen.

I tried.  While holding my tray filled with fucking delicious quesadillas; I tried to sign to my Deaf kid that he needed to apologize for making you spill your drink.  Even though it really wasn't his fault.

And I expected your expression to soften once you realized you were staring down a fucking DEAF kid. But no.

You hardened your stink eye, huffed and grumped off.

You sir,  are old enough to know better.

And old enough to fuck the fuck off.

Ryan would like to weigh in:

*******

Fuck you summer,

Though I do enjoy the lack of homework battles and mad dashes to the bus every morning. And chicken wings on the grill and drinks by the fire kick plenty of ass. The whole swimming thing is exhausting.

And we swim.  A lot.

Friends and relatives with beautiful pools.  A pond across the street.  The ocean everywhere.

So far this week?  Pool Wednesday, pond yesterday and the ocean today.

It is not physically exhausting.  It is mentally and emotionally draining.

Hearing aids and fancy FM system are not compatible with sand and water. I swallow a lump every time I have him hand me his aids.  'Cause when he's in the water, he can't hear a damn thing.

And you'd think that having been Deaf for the past 8.5 years, our friends and family would know this.

You'd be wrong.

Just last week, a very close member of the family was talking to Owen in the pool.  He swam away mid sentence and this person actually asked me;

"How much does he hear without his hearing aids?"

For fucking real.

Yeah.  That ten grand worth of amplification he wears is just for show.  He can totally hear without it.

I asked Owen later that day;

"How do you feel when people talk to you when you're not wearing your hearing aids?"

"Sad I think?"

Ack.

So fuck anyone who talks to my Deaf  kid at the pool/pond/beach.  Ask me to interpret for fuck's sake.

That is, until Ryan's gift arrives;

Sunday had a shit week, so it looks like there's no link up today.

Hope you're feeling better soon Sunday!

*******

*ingnoranus:  one who in ignorant AND an ass hole.  I didn't make this word up. But am certain whomever did, would be pleased to know that it is being used to its full potential.

learning things.

*******

Even if one is not a fan of advice, the giving or receiving, some things are too important not to pass on to an expectant first time mother:

*******
When you see a giant chalk penis drawn on the playground parking lot?

Before taking a picture of it (as if you wouldn't take a picture of it), do a quick scan of your surroundings to be sure that your five year old's preschool friend isn't standing behind you. 

With her grandmother.

*******
The blooming of tiger lilies is a highly anticipated event.

And one cannot resist allowing excited five year old to pick "Just one please!!??"

Much squeaking and squealing as sweet girl carefully selects the perfect specimen, gazes lovingly at it as she brings it to her nose, and bursts into tears as her prize;

"Doesn't smell like tiger!!!!"

*******

One should be able to allow a nine year old to get himself dressed.

One might want to appraise child's outfit before letting him out the door.

On picture day.

He might be placed in the front row.

With his pants noticeably on backwards.

*******

Fancy FM system for Deaf child will allow him to hear the wearer anywhere the wearer goes.

The wearer may want to turn device off while going to the bathroom;

"Yup.  Mommy going potty.  I hear her.  Mom!!  You fart??!!"

*******

Five years old has a wicked imagination. 

Sticks and mud become culinary delights;

"Horse poop and tittlers" is pretend delicious. 

Coining phrases is endless fun;

"Tight as a squirrel's butt!" 

It is not always necessary to ask for explanation.

"Rufies" is the best name for an imaginary puppy.
 
And making up words will never get old;

"Mom!  I made up a new word!  You want to hear it?"

"Of course!"

"Fukkah!"

*******