Can you hear me now?

Maya's ear tube surgery will be tomorrow at 8:50am. We will check-in at NY Eye & Ear Hospital at 7:20am. The procedure should be simple enough . . . the 2 stressful parts are keeping her happy despite not being able to eat prior to the surgery, and then the recovery from the anesthesia. It threw her for a loop last time.

Keep us in your thoughts, and I will update tomorrow, even if it's brief.

The not snowing

(The title is my clever way of breaking the tension after my heavy last post "The not knowing"---see, a play on words? And also it points out that today is a dreadfully miserable rainy--not snowy--day. Oh, and I'm putting up our snowstorm pictures, finally.)

(Don't be insulted that I had to explain my clever title---I'm not underestimating you, it's for my other blog readers. Really.)

Snowstorm pics--Dave & Maya got to play together in the snow for the first time this year (if you remember, the last snowstorm was filled with vomit and the worst waffle ever . . . this one was much better).

I was hopping up and down, whistling, making animals noises, and trying desperately to get a picture of both of them looking in the same frick-fracking direction and smiling:


Alright, off to a slow start. Dave, why don't you get in there with her?

Ok, cute snowman :) But how about we try to smile?


Dave-well done. Maya, step it up! Weee! Come on Maya! (slight hopping)

Maya, yes!!!! Argh, DAVE! HONESTLY?!

Sigh. Yes, Dave, that's much better. MAYAmayamayamaya . . .

Then I gave up and we took her sledding:

Or just plopped her on the hood of the car.

And we tried again for a pic:

So close!

FINALLY!!!!!!!!!!!!!!!!!!!!!!!!!!

The new walker: Our OT brought a walker for Maya this week, and I was excited to get her moving. She wasn't super into it on Monday night at home, and I thought that maybe we'd have more luck with it outside.

On Tuesday I was a total rookie---I honestly felt impressive loading up the walker to go to the park. Good for you! Be bold, take it out! Maybe she'll be more interested in trying it outside. The clunking and clanging as I tried to figure out how to move around with it was ridiculous. I giggled to myself for about a third of the walk to the park, shifting and reshifting until I came up with this:

On Weds I was a pro:

Dave & I looked at this picture and realized that if I painted eyeballs on the bottom of the tennis balls than I might scare the bejeezus out of people as we walk towards them.

And, anyway, the playground idea worked. She can't get far on her own yet, but if I push she'll toddle along to keep up just fine.

And now I'm tired of writing this, and I have no interesting way to tie it together, so we'll end with my favorite pic from this past month:

Perfection :)

The not knowing

I'm not sure how to even begin this without sounding ridiculous and self-indulgent. But I think I will, and if you feel your eyes starting to roll, then skip ahead to a post with pictures or something . . . I won't be offended. But sometimes I learn a lot from reading the blogs of people who are in tough situations, and maybe a look into my processing will help someone else. Or, maybe you're just nosy and like the voyeurism of reading someone's innermost struggles :)

Maya still has no diagnosis for the source of her global developmental delays . . . and I don't like the be dramatic, or feel sorry for myself. Those two things combined have left me in an interesting place over the last year-ish. I haven't had a mental framework for how to interpret her . . . will she grow up to be a "normal" kid with delays, who will just need a little time to catch up . . . maybe start school a year late, or not even that? Or will she be a kid who will need to ride a special bus, go to a special school, and need assistive living when she's older? And I know that everyone wonders what the future will hold for their child, but our situation is, well, a little different.

The not knowing is killer. I hate it. In the beginning, I would go into every dr's appointment (and there were a lot of them) with a swirly mixture of dread and nervous excitement----"Maybe this is when they'll figure out what is wrong----I don't want something big to be wrong----but if you can't tell me that everything is normal, and least tell me what the something wrong is----please don't give me more of the not knowing." But we just gathered more and more handfuls of the not knowing, as tests (cardiac tests, karyotype, genetic screening, MRI) came back normal. And each test that came back normal was rightfully a cause for big celebration (!!!) but a little, teeny tiny, grey voice deep in my head would say "oh, come on already."

I realized a week or so ago that I've been pinballing (that's when you shoot back and forth like the ball in a pinball machine) around through Kubler-Ross's stages of grief (even though I wouldn't necessarily call my thinking grieving, maybe it fits). In any given week, and sometimes on any given day, I would spend time in anger (at the world, at the system, at the doctors, sometimes at Maya), denial (she's just taking her time), depression ( ), and acceptance. And as quickly as I wrapped some sort of acceptance around me, it would slip away a little bit and denial would swoop back in. Although the ratios of time-spent-in-each-place have changed, I've been pinballing for a long time now.

Like 15 months.

At times I've wished for something with a name. At least "Down syndrome" would be a label that people could understand. It's hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn't move (unless the door is left open, and then she crawls with lightening speed). I'm sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I'm not going to launch into a whole "Oh she has delays" speech. I just need a soundbite, something that shows that she's different, I know it, we're able to laugh at ourselves and take things in stride and with grace, and let's move on to chat about something more fun. I'm bite-less.

Anyway, I've realized that some people might feel like they've missed the announcement. Like, wait, I heard Maya is getting a trillion therapies a week---what's wrong with her? Did Dana ever tell you? But there's just been nothing to tell.

Suddenly, now, I can't do the pinballing. I'm so tired of it. So I'm owning the label "special needs" which I really didn't feel comfortable with until last week. I thought that label should be saved for kids who really had special needs, not silly Maya, and then Dave said "Um, she gets like 12 therapies a week, that's special needs". Yeah, I guess so----it doesn't bum me out, I just didn't want to take the label and use it in a "oh, so sad for me, my kid has special needs" kind of way.

So I'm boxing up as much denial as I can, and putting it on a high shelf somewhere, hopefully next to my box of not knowing. I know that I'll still end up looking through both of them from time to time, but they need to be further away. The ambiguity has got to go for now, I need to be in a making-peace-and-moving-on place. And I think I'm getting really close to there.

So the goal of all of this, besides clearing my own head, was to clear the air about where Maya is, and also to let people in a little. I tend to be fairly dry most of the time (in case you haven't noticed), but maybe it's helpful to come clean once in a while.

Today was Maya's triumphant return to the swimming pool! We've had a lot of stuff going on recently, combined with weather issues, stuff we're practicing at home, and several colds/infections over the past few weeks (months?). But today she was back, and having a great time with her dad:



Here, Maya is practicing how to kick. Dave is practicing how to smile.

And I'm not in the pictures because I had to stay home and clean the rat cages.

Just kidding---I was there . . . I took the pictures! But I couldn't resist putting up this stylish picture of me cleaning cages. (The mask is because the critters sometimes make me sneeze.)

We took some fun pictures during the snowstorm, but I need to find the camera cord and upload them.

Cruisin' for a bruisin' . . . wait, that's an innappropriate title

Maya is cruising! Notice our new lovely living room set-up. Maya crawls over to the table, stands up, throws everything that she can find on the table onto the floor, and then cruises along to the couch, as you see below:



Then she throws more stuff onto the floor, wiggles her tush for about 3 minutes, slides into a split and plops onto the ground. Progress :)


In case my earlier post made you woner what a rice bin is, here it is. It's a bin of rice (literally) with toys in it. Now that you know, we won't be using it anymore because today she picked up a handful of rice and shoved it into her mouth. Hysteria ensued (on my part) followed my sneaky giggling attemped repetitions (her part). And now that's done.


Mommy, this is not the time for pictures. Look at me. Honestly.

These are Maya's TheraTogs. She (usually) has them on under her clothes, so if you wonder why her belly looks smurfy the next time you see her, that's why.

Pics from break

Birthday dinner:

Central Park Zoo:

Dave: "Cheese!"

Maya: "Forget the picture, Daddy, there's a giant bird next to me!"

Bronx Zoo:

Leaving the zoo is the saddest part of the day :(

Dancing Queen :)

Maya gets her groove on at music class:

This does not bode well for the teenage years . . .

What can I say . . . the girl loves the telephone :)

This was a new development today . . . I think the video speaks for itself. (I was using our landline to call my cell phone, which is why you hear beeping)

Clearly, the second half (1:28-end) is the most amusing :)

This week was Dave's February vacation, which has been really nice :) As usual, we did a million projects (requiring a few trips to Target---first to buy, then to return, then to buy), ran errands, and had general fun. More pictures will be coming as I upload them from the camera.

In no particular order,we:
-went to 2 zoos (Central Park & Bronx)
-had 2 doctor appointments (both for Maya)
-had 1 dentist appointment (for me)
-celebrated at my belated birthday dinner (while my parents babysat)
-cleaned out and re-organized a closet
-visited in NJ with my parents, sister & Maya's cousins, Collin & Emerson
-had a normal therapy load
-met our new Special Instructor . . . Maya's going to be seeing her 3 times a week now


Also,

-Dave recovered from being sick
-I freecycled (What's that? You don't know Freecycle?)a bunch of stuff

-We have 9 rats now . . . mwah ha ha (evil laughter aside, it's just the circle of life)

Here are some NJ pics. The kids got along fabulously, although Maya was mostly silent. She's definitely a watcher . . . taking it all in and laughing.

First they examined her, like when you add a new monkey to a cage:

Yes, we like her!

Maya tries Dave's famous "I've got something to show you---no I don't!" (jk, but it looks like it!) I'm on standby to make sure she doesn't try to pull hair.

Emerson attempts to kidnap Maya from Aunt Lisa

"Well, if I can't hold her, I can ride her!"

Sharing the barn :)

Tubes & books

1. We had an ENT appointment Monday. Poor Maya has another ear infection developing, which sealed the deal for tubes. She'll be getting them on March 16th, or earlier if there's a cancellation. Based on the doctor appointments we've had we can definitely say she's had fluid in her ears for at least the past month, but since she had an ear infection in November and one in December it could be much longer. Maybe the surgery will help her hearing (fingers crossed). We're not super psyched about another surgery day, but this is supposed to be an easier procedure and recovery that the adenoids were. You can find more info here about ear tube surgery.

Playing in the waiting room:


Chilling at Blockhead's on Valentine's Day (note the heart shirt, and Dave's stylish tie):

2. I've rejoined the website Paperback Swap. If you like to read, but have gathered enough books and want to clear some out, this site is great. For every book that you mail out to someone, you get a credit and can request a new book. I have had the recent urge to get rid of all of the "stuff" in the apartment, and I like amassing credits so that when I want a new book I can get one for free!

PS. Oh, and the rats are huge and live in a double decker: