БогородицаиконописYesterday we went to the Monterey Bay Aquarium.  I’m always stunned by the place.

Ava was fascinated by the mackerels and other schooling fish and could scarcely be dragged away.  Check out the video here.  They had a special exhibit on seahorses that was extremely cool.

Reid brought his new sketchbook and pencils, and decided to sketch one of the eels.

[Show as slideshow]

[View with PicLens]

And video of Reid sketching here.

Shared with me from a dear friend, compliments of Louise Hay:

“I easily release that which I no longer need.  The past is over and I am free.”

I have a new on-line friend these days.  Her name is Katie and she just had a baby boy with Down syndrome.  As it so happens, she’s also the neighbor of my in-laws.

She emailed me today, asking whether or not I breast fed Ava and how did it go?  Did I have any tricks up my sleeve to help her along in her quest to nurse her wee lad.  I emailed her back with a few pointers, but unfortunately didn’t have the time today to call her to chat about it more.  And now, with the time difference, it’s much too late for me to call her.

Katie’s question has been in the back of my mind all day long.  It brought back so many memories of a teeny tiny baby Ava, still swimming in preemie clothes at 6 weeks old.  And she was never a preemie–she just didn’t want to eat those first couple of months.  And the anguish–I’m certainly glad it’s in the past.

This happens all the time for me, and today is no different.  A situation like this one makes me realize how much time has passed, how much I’ve learned about Down syndrome, about Ava, about my family and about me since she graced us with her presence.  Eating is certainly not a problem anymore–she’d likely devour an entire bag of cookies if I let her go for it.  There’s other things now.

She’s busy as heck.  She’s frustrated that she understands every stinking word someone says to her but can’t respond like you and I.  She’s really into playing on the bed with Reid….  Lots of things.

And the things that seem so frustrating to me today – just like her lack of eating as a baby – will likely, one day, be a thing of the past that I’ll reflect upon, glad it’s where it is, and deal with the current day.

Today is today.  Yesterday was yesterday.  And tomorrow is tomorrow.  And so it goes….

…so why is it so freaking busy?!  I mean, come on.  We all talk about cheer and joy and wishes for a happy and healthy new year.  Things I really enjoy and really do hope for.  And then that little thing called time comes a-knockin’ on my door and whoop!  I just turn crazy.

Just this morning I lost it when I broke a cereal bowl.  Shattered to bits on my kitchen floor and I start crying.  What the f–k was that all about?  I lost it because having to clean up the broken bowl bits was just one more thing I had to do at this most wonderful time of the year.  That and pick up the trash that some critter went through in the night and gloriously spread all over our yard.  Oh, and rebuild my iphone.  And don’t forget that 2, yes 2, warning lights were on in my car when I started it up for the first time today.

So now I’m sitting back and venting to the world.  But my venting is not in vain.

I’m also here to say that I’m pleased that I am able to bend down and pick up the broken bowl bits, that I’m glad a hungry critter got an unexpected snack in the night, that I have an iphone, and that I’m lucky enough to not only have a car but be able-bodied enough to drive it (Sean would argue “kinda”) and see while I’m doing so.

So enough of the consumerism and the mayhem of the holiday season.  Here’s to honestly and heartfully being thankful and grateful for what I have in my life: an amazing partner, exceptional children, a loving family and some of the best friends a person can ask for.

Need I more?  Absolutely not.

So you’ve given birth to a kid with Down syndrome (DS)?  Congrats!  Whether you knew before birth or not, settle in, because it’s time to get busy.  (“Did you know?” will likely be one of the most common questions you’ll get.  It refers to “Did you know you were having a kid with DS before you gave birth?” and it’s meant to sort you into one of two categories:  Us or Them.  More on this later.)

Here is a quick list of 7 things to do:

1. Celebrate

   Congratulations.  You’ve just had a child, and he or she is a beautiful child.  Sure, there will be some extra stuff for you to deal with, but when is there ever a guarantee — with any child — that you won’t have some extra stuff to deal with?  Your kid is wonderful and will make you a better person.  Celebrate.

2. Read this

   This is the article that started it all for us.  Written by Amy and it’s awesome.  It might give you a new perspective.

3. Learn sign language

   Right away.  Don’t wait.  Seriously:  do it now.  Signing Time videos are the easiest way we’ve found.

4. Learn more

   A lot more.  Browse the “Down syndrome” section of links on the right-hand side of this page — especially the DS Health link.  You’ll be amazed at how little most people know about DS — especially doctors and other people who should know better.  And you’ll need that knowledge.

5. Reach out to others

   You need help.  Everyone does.  The best help comes from other parents with kids with DS.  Find your local group and get involved.  The NDSS website is a good place to start.  And reach out when you meet or see other people — especially other people with kids with DS.

6. Fight the R-word

   It’s a word that demeans our children.  Even if it’s casually used, and not used in a way that’s directed toward you or your family, please step in and ask the person to stop using the word in that way.  When used casually, its meaning is based on a fundamental comparative insult to people with special needs.  Help stop it.

7. Celebrate

   Congratulations.  You’ve just become a better person — and not just for your child.  You are now a true activist, and you’re making the world a much better place.  Celebrate.

Just happened today.

I got scared that I might not ever have a conversation with Ava.

And then I quickly realized that I do.  Everyday.  We have a lot to say to one another.  We just use our hands more than our mouths to do so.

Ava has decided to be better today.  She hasn’t hit me once!

Her learning curve is just so big.

And I think so is mine.

There have been so many times this past week that I’ve thought to myself, “I only had to tell Reid [insert safety violation/warning/reminder here] once when HE was a toddler.  When is SHE going to get it?!”  And for whatever reason, this past week has found me reacting poorly, tangled in a knot about what to do next that I feel completely unsure at times.

The other day we were at my friend’s house, bidding her a’dieu on her move, and I really wanted to just talk to my friend and let Ava play.  But Ava was a complete and utter nightmare: running all over the place, having mini-tantrums, cornering my friend’s daughter because she was just so keen on hugging and kissing her.  It was like a fire was on inside her and I could do only my best to keep it semi-contained.

Ava’s fire is a wonderful thing if you really think about it.  Her stubbornness, her glory of life, her attraction to so many people and her unabashed joy in the things so many others find simple.  But sometimes, for me, it seems like it’s way over the top.  Like if Ava were to slow down every once in awhile (aside from when she’s sleeping) that she could capture more of the essence of life, get along better with her peers and brother and me, for that matter.

But her fire keeps on raging, at a pace that can be difficult at best to keep up with.  My inclination is that she should adjust to us, me.  But is that the correct assumption?  Is it in my right or purview to tone her down to my comfort zone, or is it better that I eat it and step up to the plate and come to her level, embrace her fire and figure it out for me?

And is that dangerous–me conforming to her and not vice-versa?  I really don’t know.  All I can say for certain is that I feel, strongly, that I am entering new territory here.  I’m unsure how to proceed.  Do I extinguish her flame in exchange for a more docile, agreeable girl?  Or do I embrace her seeming insanity and just roll with it?

So I joined Facebook earlier this week and let me just say, I haven’t been quite this addicted in a LONG time.  It’s really pretty strange–pretty much everyone, and I mean everyone, that I’ve thought about in the last 20 years is on there.  Absolutely crazy.  And so I can “invite” them to be my friends, and they can “accept my invitation” and then you can send notes back and forth, find out where they are, what they’re up to, pretty much anything they’re (I’m?) willing to share.  It’s kinda cool and kinda scary all at the same time.