on family trains

Not so much we can really choose about our families, is there? Just our partner. Parents, offspring, everyone else - mothers in law! are pure luck of the draw. Or what you were dealt.

I finally had to see my MIL. Mikey said that since she's going back to Paris tomorrow, the whole fam-clan was going to have dinner and it would be pretty bad if I didn't come. I bit the bullet. Went.

And man oh, man! I haven't been in a climate that frigid since Vermont in winter! Wow! It was more like arctic than vermont-ish. She sat stiffly on her couch and commented or queried on things like why Micah wasn't kissing her... I sat stiffly on mine and shrugged away for the most part.

She wasn't outright insulting. Big, huge improvement. Just sullen, cold, unpleasant. But still, her just being sullen, cold and unpleasant is a huge leap forward.

Today we headed over Tilden Park for a train-riding frenzy (they have super cool mini stream trains that drive Micah into a joyous trance) and went round and round the tracks, the beautiful sun streaming through the redwoods on us, around us. Warm. I was looking at Mikey and then us both at Micah, sitting still in the absorption of his delight. I was so happy that this here is my family, my very own little clan. My partner of choice and my little boy that I would have chosen if I could but didn't even have to.

And I'm grateful.

Here they are, wows and all:

a full name for moxie

I've been almost obsessed with Moxie's middle name... I just can't find the perfect one. It's funny, too, because I feel like the obsession that I've got with her middle name is what most people normally have with the first name. The thing is, I don't feel like we had much choice with her first name.

She kind of just named herself. This is who she is. Nothing else fit. Unless at birth she turns out to be completely different than she has been so far, Moxie she is.

So that leaves her middle name.

One of the things that I really liked when I was engaged in Hawaiian studies were the naming practices. They'd pick the best names ever for their kids (usually when they were a little older). Names like, 'child-born-on-the-night-full-of-stars-to-parents-in-love-and-who-shows-courage-and-strength-may-she-be-wise'. That's why most Hawaiian names are like, "Kealani'ahea'a'pono'amoku'aina'leilani"....but you can call me "Kea". On a side note, I also worked in the Records office and we had to try and hand calligraphy in those hella long names in the tiny degree-entitled to spot...!!! That was so funny.

It finally occurred to me that I ought to write to my old department and ask them for help! So I dug up a former professor from the website and wrote him. He wrote back immediately, said he'd ask some others about it. It's been 2 days and I'm happy. Hopeful.

So what do I want? I want something like:

child-born-from-love-guarded-by-angels-protected-by-God-and-who-lives-in-shining-light-and-happiness

..but you can call me Moxie

love light

I went through the windshield of our car when I was 4.

This obviously had a profound effect on my life. One of the things that I clearly remember from the time was pre-accident, people constantly commenting on how cute I was, then post-accident, people looking at me and tears would start to well up.

Yes, they'd look at me and basically start crying. Later, they would struggle to say something positive about me - my eyes and hair (when it started to grow back, that is) became instant hits and for years I couldn't stand it if anyone complimented me on either.

My Grandma - my Mom's Mom - was an exception. She was one of the only people - if not the only person who didn't seem to skip a beat. She thought I was the reason the sun rose before the accident and I remained so after. It was honestly like my blood-red scars criss-crossing and dividing my face, ripping my eyebrow and my chin up just... didn't exist. Were not there. Not like she didn't see them - it was as if they, as scars and markers of non-beauty in our society, remained included in the package that was me, but were beautiful. Because they were a part of me.

I needed that. To have the same love, to be treated the same as I was, pre-accident, and to be thought beautiful, shaved head and all. No matter what.

When Mom told Grandma over the phone about Moxie, Grandma said, "oh, that's all right! She's a baby and we'll love her!"

Grandma came over last night and I told her again. Without skipping a beat, she said, "honey, it's okay - she'll be happy and we'll love her"

I started crying.

I'm so lucky to still have my Grandma to make me feel like everything is going to be okay, so lucky to be bathed in her love and glowing positivity.

birth touring

When we went to the Oakland hospital for Micah's birth tour, there was a lesbian couple also touring. They went at it with the questions - opened up their pre-written list and grilled the guide on each and every aspect of the birth experience. The bed. The room size. The birth ball. The bathroom... you name it, they covered it.

Since finding out that the perinatalists from hell might "help out" in Moxie's birth (if she's born on a Monday, at the Oakland hospital), I've been pretty fixed on finding alternative spots. I just can't imagine much worse than seeing Walton (pictured) or Newton's heads between my legs as my precious girl enters this world. Uh uh. Nope. Not an option (although Mikey says that would be the ultimate irony: having the very doctor (s) that encouraged us to abort her, deliver her).

We've been touring the hospitals in our region - covered 2 others so far, still have one to go. In both of the tours, I've found that Mikey and I are becoming the lesbian couple that we toured with. While all the other (first timers) are basically standing and looking sluggishly happy, maybe asking a question or two (stuff like, 'can I bring my birth plan'!!!! I may be soooooo cynical now, but I'll bet bottom dollar those birth plans are a standing joke in the nurse/doctor stations; that's how little regard they gave to ours..). Then I start rolling and I don't stop. The tour guides get to where they say something then look at me and wait.

This last hospital we went to on Thursday was funny. A mother who was touring with her daughter seemed to think I was attacking the tour guide or something and got all defensive after I was asking about the nurse/patient ratio. The mother! She was all, 'I had 3 kids - including this one - at kaiser, and my experience was always wonderful'. I said that I'd had a kid already at kaiser too! And that I just wanted to know the ratio, I wasn't attacking them or anything.

It's so weird to me - such a bender - that if we ask a lot of questions, we're seen as antagonistic. You know? And what am I asking? I am only asking, like the lesbian couple was, about things related to the facility, to ratios and statistics. That's IT!! Because I won't be able to meet the person or the team that will actually be delivering my baby until the time comes. Because I won't be able to see the room that I'll birth in until the time comes. Because I might even have to give birth in the triage area if they are full. We know precious nothing about the things that really matter - and we can't know it because of the way the system is set. Yet if we ask about the little details that we can ask about, we're pushy.

I so sincerely hope that becomes as senseless to my grand kids as my own grandma's birth stories are to me - them both being knocked out and my parents being delivered via forceps.

ripening on up

In all of this, I keep forgetting I'm just pregnant. You know? That this super cool process of life growth is happening right now, inside of my very own body. Hows about that. Nifty and miraculous!

So here I am, all of 30 weeks. My boy Micah doesn't have any idea that there is a baby under this skin of mine - he just thinks my belly is a nice place to sit on for story time. Like a perch. He is also fascinated with belly buttons. I wonder what he's going to do when mine disappears?

I'm really feeling it all now. Heavy. Slow. Achy with stretched out muscles and things and pieces of me. Uncomfortable. Thirsty. Peeing every 3 minutes!

But it's great. I love it. I promise I'm no masochist, but it's just great to feel Moxie moving and know that she's there and despite all my fears, I love her so very much. I love having her with me now, my little constant companion.

I love you, Moxie, mine.

pieces of today

There have been a bunch of interesting articles floating around, like how to talk about disabilities and no such thing as a perfect child. The thing that I really like about this whole Sarah Palin/Silverman retard thing is that it's got people that don't usually talk about this, talking. We need that, you know. We need people to talk and get worked up about it in some way. Things never change when people don't really care one way or the other about something.

I'm not just talking about ds - I'm talking about attitudes and perceptions of disability as a whole.

I did like the Family Guy episode (that I happened to catch completely by chance). It was great to see a girl with ds portrayed in a way other than cloying, sweeter-than-nice. She was more like a real person. In the same vein, I loved Murderball. Badass guys in chairs slamming around.

Moving on, I'm working from home today but not getting much done. M ate something that didn't get on well with his tummy and he's been puking a lot. It's been a while since that's happened - I kind of forgot what baby puke's like! I guess this is a great refresher. 2 more months... I'll have all kinds of spit up stuff again!

heart light, so bright

Mikey met with his Mom.

She had received all the emails from us about everything, and asked him, "so has she got anything?"

He said, "yes". "She's got two arms, two legs and a heart."

I love Mikey.

I don't know if all my recent whack-a-doo-ness is from hormones or what, but I feel like I'm more emotional than normal. I'm crying a lot, and again, feel super scared about everything. This has GOT to be the most repetitive blog ever. It reminds me of my journal writing...

I've kept journals since I was... 7? Yes, around then. When we moved to Fiji, I started one and never stopped. There came a point in time, maybe when I was 21 or 22 when I was just bored with what I was writing. It was all so very repetitive. Nothing much was changing. So I quit writing it all out and started collaging, painting, drawing - everything and anything but simply writing.

I still do that journal work. It probably is a lot more interesting that reading any of these posts that seem to be about being scared and crying every*single*day. For sure, that's my reality now and I hope it changes when I meet my baby.

I'm just scared.

And yes. Still crying.

fallow fears

Things will be better when I have my baby. They have to be.

I saw a girl barrista in the coffee shop this morning. Fuschia hair, tats all over her arms, retro-makeup. She was so pretty and I felt myself ready to cry. Is my own girl baby just going to be the token person with a disability working at a coffee shop? Hmm?

No. She won't. She can't. I won't let it happen.

Not that that's wrong or bad. I just don't want her being a token. You know?

I found myself struggling not to cry later, as I sat in the ODEP's Listening Tour and heard speakers from East Bay Innovations and the ARC talk about employment stats of those with developmental disabilities (14% employed, total, vs' the 14% unemployment rate for the general population) and barriers to employment that those with developmental disabilities face.

I want her to be okay, this baby of mine. And I'm still so very scared of all the unknowns. I feel her kick (and boy is she ever a kicker!) and I'm reassured - a baby that kicks this hard and this much is fine. It's when she's not moving that my fears mount, pile up.

I'm so glad she moves a lot.

I'm still scared.

The door to my office is shut and I'm trying not to cry more.
\

roar, tiger, roar!!!

I woke up early today, so very excited.
It's NEW YEAR's!!!
Year of the Tiger!

Let's hear you roar, pussy cat.

It makes me sooooooooooooo happy to know that we're heading for this new year, this new dynamic. Fresh start. Moving forward. All that. And tiger is a nice strong sign, good motion, good year for change and for continuing with things have been started.

There is a lot that I've started that I need to finish:

- artstuff: I want to finish getting my paintings and books together and sell them
- the art quilt
- make some kiddie wear and see if it sells here in Stroller City
- art class for kidlings
- finish all the cool projects that I have boiling at work

Then there are the things that I want to do:

- travel: check out some parts of Europe for our next potential home + go back to Peru
- learn more about print making
- learn how to frame my own pictures
- maybe buy a house - if we can swing it of course

Keep it simple, meriah. Keep it simple. There is more that I'd like to do of course, but I want to try and focus on the stuff I can actually get done in this here Tiger Year.

It's 9:05. I want dim sum. It doesn't open till 10. Sheeeeeeeeesh. Grrrrrrrrrr.

moving from the r-word

There is such commotion over the 'r' word stuff. Palin/Emmanuel, Palin/Rush. And just the use of it in general.

I was really on the fence about it - probably leaning more towards it not being that big a deal. That some people seem to be over-reacting. But then I read the Unknown Contributor's post and realized that I'm wrong. 'Retard' is not a word that should be used. Ever.

I read more blog posts about it - here are a smattering of my faves that wrote about the Palinstuff:

Finnian's Journey
Class of 2008
T-cubed

It's a big subject and I don't think I'd ever have really understood it if I hadn't read what these mothers wrote. Again, especially the Unknown Contributor. That one left me in tears and promising to never say it again.

On a bright note, check out the new entries from my fave-photographer-mommy-blogger, Conny Wenk - she has some new photos up - they always make my day.

blithering

I can't get that dream out of my head... I keep thinking of it. Every night before I go to sleep, I pray that I'll dream more of her because I want to know - so badly! - if that was really her.

I'm definitely in the 3rd trimester now. It's weird how clearly the trimesters are demarcated, how true those demarcations are, isn't it? I chugged along the 1st trimester, sicker n' sick. Then BAM! Hit the 2nd trimester and life was once again pretty darn good (except for all the other stuff going on). 3rd trimester and BOOM, I'm waddling. Having a hard time getting comfortable. Difficulty breathing again. Hands a'fire with pain. I want my ice cream!!! And all that same stuff that I had with Micah. It's nice knowing the ropes. This is normal. Not always fun, but totally normal.

I'm almost terrified of what things are going to be like with Moxie/Ds. And yet I want to hold her so badly. I love the person that she is inside of me - so very lively! - and I'm scared of all the unknowns.

Being all flooded with hormones, that translates to a lot of tears again. I cry a lot. Hardly ever in front of other people, but yes, oodles of crying.

I'm really trying to keep myself in line. Try to rest. Try to exercise everyday. Try to do funstuff and not just work all the time. Try to give in and play with Micah when I want to. Forget about all the housework that needs doing when I get home, forget about the dishes and whatever. Just relax.

And be.

The dishes can be done later.

moxie dreaming

I had my first dream of Moxie last night.

It was weird, as probably all of my pregnant-dreams are. But to make a long weird dream short, she ended up outside of my bus window, crying for me. I was astounded as to how beautiful she was, and could only just look at her for a long time.

Then it clicked that she was waiting for me to open the window, pick her up, hold her. I did. She put tilted her head and rested her forehead against mine, her tiny round body almost seeming to collapse in relief at being held.

She was so very beautiful. Much darker than Micah. Huge eyes. Dark, dark hair.

I wonder if it was really her?

book bouncing

I am so freakin' sluggish today. It's depressing that I seem to need a longer nap that Micah does AND I'm still yawning. I want a caffeinated beverage so bad it hurts. But I won't allow myself more than one half-caff/day and I've already used my quota. Rats.

Moving on from the whine, I started reading Love You to Pieces. I have to say... I'm not a fan. Maybe it gets better, but so far I'm really taken aback by the mothers. Partly the things they do that are meant to be innocuous (like chain smoking around them, feeding them fruit loops, stuff like that) and then the stuff that's just... horrible. Smacking their kids' head in a wall. I closed it after that story - nothing about it is helpful to me. The poetry stuff doesn't do much either. It's a far cry from Gifts - where the mothers are faced with huge grief and difficulty and go through it. And talk about it. It's not just left hanging, like it is in Love You. There hasn't been resolution so far in that one - it's like a dumping ground of emotion.

Maybe I'll get back to giving it another chance after I'm done with the book I moved on to - Riding the Bus with my Sister.

This one is terrific! She is a writer. It's just beautiful. While her sister doesn't have Ds, it still makes me feel good - it's simply the type of good that I'd enjoy regardless of any Ds/disability connection.

Good books can be hard to find, can't they?

Now I want to go back and veg out on the couch and read more. But I shouldn't. I don't have any more good books waiting in the wings so I need to take it slow with this one.

star trek to planet k'tan

I have to say that I've long felt that disability offers something similar to Star Trek: it's an opportunity to figure out a better way to do something. When the original Star Trek came out, computers were around the size of a full room. Inventors and engineers took a look at that show and thought, 'hmm.... maybe we can make them smaller...?' - it inspired them to strive to create something that was previously unheard of.

Disability is the same way. Someone is in a chair and can't stand? Well, how about crafting a chair that can rise? Lost your limbs? Well, let's make cool prosthetics! Want to run? Let's tweak that fake leg! Can't talk, "locked in" (when you can't move any part of your body except for your eyes)? Let's make a speaking board that will activate when you attach a laser to your forehead and program it!

I see this stuff all the time, every day. I love that disability can stimulate people. I love that we have a choice as to whether or not we accept those inventions, utilize them. Me, I get sick of my hearing aids and sick of not being able to hear sometimes but in all honesty, I doubt that I'd do something that make me magically able to hear. I like being able to turn things off, I like my silent world. I like sitting in a busy place sometimes and only being able to hear a soft hum of the commotion around, like a blurred painting, colours running together.

I like that choice.

And so many things that were originally invented because of a disability become standard and help everyone. Take the phone: invented to try and communicate with the deaf. Typewriters: the guy who crafted that up just wanted to write to his blind lover. And curb ramps, oh curb ramps! - for wheelchair users but now much beloved by stroller-toting mommies, bikes and little kids with their radio flyers.

I just found out about a new one: baby k'tan carriers. I asked Mommies on The Board which baby carrier they'd recommend, and most responses pointed to the baby k'tan. Which was kind of funny because I'd already heard of it (besides the fact that I live in Stroller City, it was a hit on my 'regular' mommy boards), but I had no clue that it was invented by two parents specifically for their little babies with special needs: a mommy who has a son with Ds and a daddy with a son with a heart problem.

I can't wait to try it.

time for care

I finally received a return message from Louise of the Care program. This is the one that my therapist referred me to and seems to be like a good place to start in my reaching out.

Yep, reaching out. I realized a few months ago that I've dug myself rather nicely into a very isolated place in the corner. It was a combination of things: I was burned to the quick from a couple of friendships and needed time to really recover. I moved, back to the US. And then more recently, I hooked up with Mikey and my life became highly focused on the us, on our family.

It's kind of funny being in this spot and just thinking, wow! I'm really lonely!

So with the feng-shui'ing process that I've been engaging in, I've paid special attention to the friends/helpful people 'bagua'. I need more friends. And I need more help.

That's what my reaching out to the Care program is about. I want to try and connect with others. I'll be doing the same with other organizations like the Down Syndrome Association. You know, I've never even met a child with Ds. I've seen people from time to time walking in the street who clearly have Ds, but I've never really talked to anyone with an extra chromosome.

I think that needs to change.