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.

I first noticed them signing while I was waiting to board a flight from Denver to San Jose. One was a tall, skinny, balding white guy about my age and the other a black boy who was maybe 10 or 11 years old. There was nothing extraordinary about either except that they were signing. It became clear that the kid was bound for my flight, and that the adult was dropping him off before he went to catch his own flight to somewhere else. I watched their conversation as intently as I could, hoping to catch something of it. My ASL skills were too poor and slow, and I managed only to snatch the word “mother” and some obvious “you” and “I” signs. The boy pre-boarded the flight, and I stood waiting, thinking about my own experience with ASL.

Amy, Reid and I started learning American Sign Language as a method to communicate with Ava. As Ava has grown, so as my skill with ASL, but it’s very fair to say that I can only manage “toddler” ASL. Amy and Ava are much better, and Reid’s skills are stronger still. I’m very grateful for learning it, for it was only through ASL that we learned of Ava’s advanced reading and receptive language capabilities. Even though Ava has Down syndrome and is very delayed with her speech, we discovered that at age 3.5 she was reading at a kindergarten level. Without ASL, Ava would have been a very bright child trapped without much ability to express much beyond frustration.

I boarded the Southwest Airlines jet, and began to look for a seat. I noticed that the boy was sitting by himself near the window in a row toward the front of the plane. I took the aisle seat in his row, hoping that I might work up the courage to test my ASL skills and attempt to communicate with him. At the very least, I thought, I might be able to help him if he needed it. I sat surprised at my nervousness and at the level of adrenaline coursing through me. I leaned over and got the boy’s attention by tapping him on his arm.

I signed, “I. Know. Little. A. S. L.”

He got a pleasantly surprised look on his face and signed, “Thanks.”

I signed, “I’m s-e-a-n.”

He smiled and signed, “r-o-b-e-r-t.” At least I think that’s what he signed. I’m quite sure, but I was so nervous and shocked and giddy at the prospect of actually signing with someone that I almost forgot to muster the considerable concentration required of me to recognize even his slowly manipulated (for my benefit) finger-spelling.

I gave him a “Hi” sign and he returned the favor. Relieved that I had accomplished that much, and eager for a break from the anxiety of my first signing communication with anyone outside my family, I took the opportunity to settle into my seat. Robert seemed a typical kid of his age, and wasn’t terribly interested in conversation. Again, I was partly relieved, having sustained a high degree of anxiety that he would be frustrated at my lack of communication skills. When the flight attendant came by for drinks, I asked him if he wanted one. He said yes, but only shrugged when I asked him what he wanted. The flight attended suggested a Coke, and he agreed.

That pretty much summed up the majority of our communication, except for his nod and my wave when he departed. But it was enough for me. I can only hope that I helped eliminate some of his travel anxiety if he was feeling it. Robert gave me an expanded possibility for communication. And he gave me yet another reason to be grateful for my little girl, Ava.