10 December, 2013

Last Night in the Very Late Early Morning

It's late.

I've tried all the remedies to sleep, but my mind is so filled this time of year, it's hard to imagine it will slow down.

Instead of sleepy,  I fall in to nostalgia, which is possibly the worst category; it's worse than plain sadness or melancholy, or insomnia. I think nostalgia is a purgatory for people who have a solid sense of recall and an ability to  include all of their senses when they remember.

It conjures up almost every place I've been-by smell, and vision, and emotion. The night is instantly filled with forty one years of life, instead of whatever became of this day.

I certainly relive all of the most recent moments that have happened when my feet were a little cold, when Christmas was around the corner, or upon us, but more likely my mind wanders back to 8, and 12, 19, and 22, to when I was a bride-to be, and days of new-motherhood.

I remember learning to ski with my "Unka Danke" (because that is what we called my mother's brother; we always had so many reasons to thank him). He pushed me down into the soft snow and taught me to get up on my own, then fed me soup from a thermos, and taught me how to open a beer. I never feared falling after that trip. Eight years old, and I mostly knew what you should always figure out: what is the the worst thing that can happen? Prepare for that, and everything else will be cake. Doomsday prepper in the making? Perhaps, but we have "go bags" for almost every part of our life. He gave me love and direction with no strings attached. His pragmatics dictated that he gave me distinct praise for my abilities and accomplishments- I always knew where I stood. I didn't know how rare his adjudication was until much later in life. And he treated me as an equal who just had yet to learn, never basing my identity on my age or gender.

When I am sleepy, and there is a chill in the house, I can remember being asked by my parents to help with my brother's gigantic Lego gifts that were from "Santa" because my parents had lost the patience to complete whatever Millennium Falcon or aircraft carrier was laying about in thousands of pieces (or maybe they knew how much I loved Legos, even though they were never my gift?). I spent hours on those December 24ths putting together set after set, and I was always in charge of the stickers.

I can remember that I slipped the neat bow off of the silver gift box (in the middle of the night) to see if my parents had purchased the right purse, so I would have the proper face of appropriate joy upon opening the gift, just in case they had gotten it wrong. I wanted to be disappointed alone so I wouldn't make them sad. (But they got it right!)

I remember lying, something I truly strive every single day not to do, to my parents for at least half of December one year, about who broke the foil-covered chocolate ornaments on the tree and ate part of each ball.  I took the blame so my little brother would not get in trouble...as if my parents really cared. He ate so many of the chocolate balls that no one paid attention to all of the candy canes I pocketed each morning.

On this chilly night, I have a strong feeling, mixed with a  solid haze about the years where I was still living with my parents, split between them since they had divorced. I remember the realization that I really had two sets of parents. There was a dinner when my not-yet-step sisters talked on about going skiing with friends and I wanted so badly to be a part of their world, yet unbeknownst to me, at my other house, I had a new ski jacket, boots and skis waiting for me under the tree. I was a pretty lucky kid.

That was a year when I knew that things had broken, but not forever. I knew my brother and I would never suffer the ill fates that some of my friends had: angry, sad parents, changing schools. With so many parents who really loved us, how could we possibly fail? It's been confirmed in my head, after all of the stories I've heard, just how great we had it, how lucky all of my siblings from both sides are to have so many, many, parents who love them. I say now that I have six parents: the ones I came with, the ones I gained, and the ones I married into. We have that many people loving us, caring about our future, and our children's future. I've got extras looking out for me and the ones I love.

When it is this cold and  I can't sleep, I can remember starting college, and there were so many new-to-me-religions. I was invited to go to Beverly Hills with my Jewish friends, and I craved the solid, persistent, unequivocal religion they experienced. They had family and religion and culture and education all tied-in-to-one thing. It made me understand Catholics better, and Buddhists, and Hindus, and Muslims. It made being a protestant seem bland, or undecided; I church hopped. I only knew I was not a Unitarian.

I can remember, on a cold day like today sitting in the 1st Congregational Church in Berkeley, with my very kind boyfriend trying to figure out how to be a critical thinker and a Christian in one fell swoop, something he had perfected, an armor he wore without shame or arrogance. The church was clapboard and painted buttercup yellow inside, and the pews were smooth; the coffee was weak, but it was served with a smile. None of those things were a good fit for me, not the boy or the little yellow church.

I can remember racing home for the holidays, the acrid smell of tobacco in the car as my best freshman-year friend and I traveled down I-5. Thirty-eight degrees, windows open, pretending that cigarettes and 87 mph in a two door Toyota Corona couldn't shave a moment off our lives. My dad told me I should wait a bit to call him the next time I drove down, because he could do math, and knew that we never should have arrived that quickly.

In this sleeplessness, I feel the physical ache of working at the Big Blue Logo Box store I ran way back when, as the store manager. Looking at my watch (!) 4:45 pm on December 24, knowing that it would take me an hour to get to the airport, and my flight left at 6:10 pm. I remember thinking that the only place to be for Christmas was somewhere in Orange County, where the sun is shining, the grass is green, the orange and palm trees sway. I can remember the joy of exiting the plane wearing the most awesome all-wool sweater skirt and jacket with a black bowler hat and the most precious Mary Jane character shoes, with dark black tights, and realizing that upon disembarkation, I looked like someone heading to Annie Hall's funeral.

The cold, the not-sleepiness, makes me remember the nights I spent poring over books and charts trying to figure out who I would be, and the timeline it should follow. I thought my security, my future, my lifetime happiness, was most strongly knotted to marriage, which would bring me children, and a spouse, which would, in turn, garner praise from my parents. And I had hoped I would find satisfaction for myself, because for whatever shortcomings I have, I always thought my children will be better than I will ever be. I thought my awareness of my weaknesses would somehow give them strength. At the time, with all of my education and desire to succeed in the business world, I really thought I had only two tasks to get right: be married to good man, and be a good mom.

But even now on this sleepless winter night, I can feel the anxiety of trying to be the right person, the right girlfriend. I can feel the needs-to-be written-about experience of my underwear, every piece of of lacy bit I couldn't afford, falling out of my suitcase and down the airport luggage carousal, a ten foot drop, waiting to be swept up into the arms, of what I thought at the time, was going to be my father-in-law. I can remember, as my nose chilled and my cheeks pinked to a hue unknown at makeup counters, thinking that perhaps, I had just become a story in some other family's life.

Numbed hands and toes, I remember declaring my love for Descartes as snow fell around us, feeling warm in what what was surely a blizzard. I remember the longest drive home that day in the windy Jeep.

I remember the cold fog at Fort Tejon on December 26th, 1996, when my now-husband, unwittingly admitted me into his life forever by asking me to marry him, and smell of the oranges we bought miles later at a roadside stand. I wore a yellow sweater that was donated last year by accident. The sky was so very blue that day.

And I practically relive the nausea of being in a fold-out bed in my sister-law's house, suffering from the worst food poisoning. I lay dying in their front room praying the world would end because my body was dissolving from the inside out, knowing that if I had not already been engaged, my groans alone would have heralded the end of my relationship.

The cold reminds me of how warm my children's little bodies are when they crawl into my bed in the morning, making my bed a tumble of  joy I didn't know could be so very big and heart-fulfilling. I think of Descartes' giant 'Lumber man' jacket that he purchased in the middle of August in Montana, making it the best off-season purchase ever. I think of ice fishing, calculating whether my child was bigger than the holes we cut in the ice.

So many memories, so little sleep.

10 October, 2013

Cluttered Mind

Today I am over...giant backpacks, barking dogs, spilled water on the kitchen floor, the need for caffeine to remain awake, and the arrogance of the people who run stop signs.

Book keeping, refinancing, infighting, and adult acne remain top contenders for the best thing to add to a bad day to make it worse.

And while non-pologists can be ironic, their words are merely placeholders for the sadness that fills the space while we wait for contrition.

Loose pages of elementary school work, broken pencils, the desperate need for a 9-volt battery, eczema, and any other reasons skin itches, rashes, or flakes should only be doled out in the smallest of portions to anyone who also needs to bathe children, or themselves, or requires oxygen on a regular basis.

I could also do with a break from "cure speak," ungrateful people, chicken in any form, traveling spouses, and inane homework questions.

I wouldn't mind if the hoops we jump through to procure medical devices would dissolve into puddles of rainbow sherbet, and I don't even like rainbow sherbet.


And I've been thinking, the world would be better off without political posturing, lack of civility, callous disregard for fellow citizens, self-absorption, and those who litter. And domestic abuse, there's really no positive benefit to that at all.

The buzz from fluorescent lights, laundry that sours in an hour, and that little grit that remains in some of the travel mugs when they've been through a full dish cycle-those things should be abolished.

I don't think anyone should need to have a splinter until they can afford to buy their own tweezers and extract the little bugger themselves; it just seems unfair.

On the other hand I could listen to Lorde singing Royals once an hour, for this week, at least, and my son's teacher makes him laugh, and learn, and he skips to the school bus each morning. We could use more people like her in our school systems.

And every single day, the view from my window is only beautiful or better.

I have a blister on my heel, which would seem to be troublesome, but I have two kinds of band-aids to choose from, and how many days of my life will I be able to choose Angry Birds *or* Hello Kitty to heal a wound.

It's small things that build upon each other that make the difference between alive and living.

My children still like me to read to them, and when we don't start our day in a pile of parents and children, snuggled-in for 'cozy cuddle time', we all miss it. 

We have enough, and then some, and a little to give to someone else if they need it.

We have friends who we trust to share how hard this life is sometimes, people who get it, and sometimes we are called upon to help, so we know we are trusted too.

My mind can still be changed with better information, and my heart is filled to bursting on a regular basis.

So if in the face of irritations I can be open to learn, or when confronted with pettiness, I am still able to love, I am hard-pressed to say that, for at least a moment, I have experienced anything less than success.





18 September, 2013

Meaningful Communication

My boy is home sick for the third day. He's in good spirits, but his nose is so runny that it's not fair to him or to his classmates and teachers to send him to school. So we are at home together, just the two of us.

We do our own thing. He plays in the back yard. I scan endless papers into the computer hoping that I will eventually not feel overwhelmed by the number of trees lying about my house in 8 1/2 by 11 inch slivers.

We meet every ten minutes or so, fifteen if I can hear his happy sounds through the open door, and five if I can't hear him at all. It's a good arrangement. I wipe his nose, spray sunblock and offer to put on a show if he wants to lie on the couch. He lets me clean his face, and takes my hand when I invite him in for lunch.

He loves shumai, little dumplings. And after a little searching I have found him petite, one bite shrimp shumai at the intimidating, but cool, "all of Asia and other Ocean-y places and don't forget the half shelf of Mexico" store. I add chopped up pineapple, a banana, and lunch is served.

We alternate between me feeding him bites and him taking the loaded-fork to do it himself. He asked for more watered-down limeade by rolling his cup to me. I asked him if he liked the shumai.

He made a lot of higher-pitched "Ye-aa-AHH" sounds, and clapped his hands together and turned towards me and smiled.

"I'll take that as a "Yes?"

"Ye-aA-AAA!"

and so I know he likes them. Awesome. My kid has the mad eating skilz. And then I sat there next to him, and it flashed over me, as if I had never thought of it:

my son doesn't really talk.

Whoa. How is that even possible? I mean, how did my kid develop, and grow up to be this almost thirteen year-old who doesn't talk? It was, for a moment, the strangest thing I had ever heard of.

It must be similar to the feeling that other people, those who do not have contact with people like my son, react when I tell them not to expect him to communicate in words. It must be an odd concept to grasp if you do talk, and your whole family talks, and everyone in your family for generations back has used spoken language, and your circle of friends, well, they all speak too. Not speaking must seem like a really big, daunting, overwhelming, horrible thing.

I felt for the first time how foreign that might seem to people who don't live with a person who communicates differently.

and I didn't feel sad for Jack. or for myself.

I actually felt a little sad for all of those people who don't know my kid. Not only because he is a cool kid, because he is, but because communicating with Jack is, on a regular basis, so much more meaningful than communicating with an average person.

When he expresses what he needs, and I understand him, it is one of the best feelings I have, one of the best feelings I will ever have, until the next time it happens. The sense of accomplishment and relief I feel when I have understood his desires, when I have actually heard what he is 'saying', when I have met him where he is, instead of expecting him to come all the way to me... I feel amazing and successful, and he, most importantly, HE is so damn happy that I got it right.

Parenting win! Happy child!

Because that's what we all want, to be heard, to be understood. We want to have someone interact with us where we are, as we are.

And I'm not saying that it is not challenging, for me, or his dad, or his sister, or his grandparents, or for any of the people who try to educate him in classrooms, because it is. It is frustrating to want to know what he thinks: Does he want to go to the street fair or stay home? Does he know the names of the planets? Does he want to watch a movie or play in the backyard? What does he dream about? Does he really enjoy road trips? Does it bother him when I run the dishwasher after he goes to bed? Are his shoes comfortable? And to be honest, it's not always easy to consider an entire other being's paradigm, when I am not always sure of my own needs.

I imagine however, that it is much more frustrating to have all of the answers to those questions and more, and not be able to tell someone. To know exactly, precisely, what you want, and be unable to convey your opinion, on how much salt to put on the eggs, or where you would like to spend spring break.

Or to have all the questions-- what if he has all the questions: Why can't you take pictures of stars? What's the deal with Stonehenge? Who invented pizza? Will time travel ever be possible? What if you had all of the questions, and couldn't ask a single one of them?

And I'm just guessing, but it must be frustrating to be this close to conveying what you want to have happen next, but the person with whom you are interacting gave up listening too soon, didn't wait for your answer, or worse, assumed you didn't have a clue as to what was happening at all.

I worry that he is bored, and that is a terrible thought. I find myself really trying to tease out what is disability, from what is his disinterest.

This conundrum seems more real to me lately as Jack gets older; he is an age that I can distinctly remember. And I'm finding I spend a lot of time unraveling the emotional mess of wondering what are my hopes or my delusions and what are realistic expectations, and that is all tied up with the respectful presumption that my son understands the world around him.

But when it comes down to it, I believe he has a lot to say.

I don't get it right every time, probably most times. I guess wrong, I forget to ask, I don't explain something that's happening, even though I know it could probably be a teaching moment.

But I try. He lets me know when I am on the right track.  

My communication with my son is harder for me than the ease I have with other people. It takes more discipline for me to wait for his answer when I am used to buzzing around. I can't multi-task and still get the gist. It makes me think more. Yes, it makes me tired, sometimes exasperated, but I think it is making me more thoughtful in those other conversations with the rest of the world, and engaging with him is worth it every time.

 ***

Lunch is over. I ask him a few more questions trying to determine what should happen next on this stay-at-home day. I finally understand, "play outside." He is out the door in a flash, his smiling face thankful that I guessed right. He claps his hands, and lets out a whoop.

I'm smiling too, because really, how often do any of us get that kind of recognition for anything we do?

10 September, 2013

We Do Not Cross the Line

Just after the recent murder of Alex Spourdalakis, yet another parent has attempted to murder her autistic child.

Services to help families are not available to the degree they are needed, often leaving parents of children with intense needs feeling abandoned, depressed, suicidal and, in some cases, homicidal.

I just sincerely wish these conversations could be separate. They must remain separate.

I know how it happens, how the conversations seem like they should go together. As parents of kids with intense needs, medical, mental or physical, we are each slogging through life, with easy days and hard days and harder days, until something really bad happens, then we are triggered to say to the world, "See, look how hard this is. Why doesn't anyone care?" But the problem is that caregivers say this at the very same same time that someone was trying to kill their child. The minute you tie those ideas together the conversation changes into, "See, look how hard this is. We told you. Have empathy. The poor mom was really struggling. You can't blame her."

But you can. You must blame her. We must unitedly and unequivocally say that we can blame her because she tried to murder her child, and those other caretakers, they actually killed their children. We can't "cut her slack" because she was having a hard time. We can't even cut her slack because she had been injured by her child, badly. We cannot say, "We understand why she did it. You know her life was so hard because of her daughter,  because she didn't have enough help, because she was burned out, because..." Because what? So what do you mean exactly? So it's understandable when there are days or weeks, when life is hard...

Like when my son didn't rest...for years?

He didn't sleep, he screamed. He bit himself until he bled. He bit us and we bled. He lashed out. He threw himself to the ground. He broke my nose. He gave black eyes to me and one to his grandmother. We went to doctor after doctor, and therapy after therapy to no avail. We had no medical insurance for him because he had pre-existing conditions. We paid the bills with credit cards. Our life fell apart a little bit, a lot of the time, for several years. There are parts, emotional parts, that are still raw. It was very hard. I was very sad, and hope was hard to find on most days. So because it was hard, because almost every hard thing led back to my precious boy who was beside himself writhing in some kind of anguish that no one could identify, unable to speak to us and tell us what was wrong, so it would have been okay to kill him? Of course not.

NEVER OKAY.

...and I know some of you know her, that mother, and maybe I'd feel differently if I did, but I don't. I can tell you this, if my best friend tried to kill her son, you can bet your ass I'd want her in jail. I would feel horrible. I would be certain that I had failed her as a friend. I would mourn the loss of my friendship, but those things are about me, and it would not change the fact that we cannot even intimate that there are excuses as to why we can kill our kids. I would want her in jail, held accountable without question. We can add in all of the complexities of our weak family support systems, and lack of services, and all of those complexities may be real and truly horrific, but they do not, ever, explain away the fact that this woman tried to kill her child.

We can't cross that line if we want everyone to value our kids and give them an equal place in society, because in every other way that's what we ask people to do. We want our children to have a place in a proper educational setting, and we want them to be able to go to the movie theater and grow to have meaningful work, and a safe place to live, and all sorts of basic rights. Then when it comes to the most important right, the right to live, that's where you cross the line?

I thought we had all decided that we don't want our children to be  marginalized and put to death because they do not contribute enough to society. Don't we want our children to be treated as deserving to be called wholly-human? A human who has every right not to be murdered because of their neurological makeup? When we tie the two conversations together it glares at me, and I am not autistic, so I cannot imagine what it would feel like to be autistic and read that a parent could, "see how that could happen." I don't think most parents think that's what they are saying when they offer empathy, but even said eloquently, this is all I hear...my autistic child is not as valuable.

but there can be no excuses. 

We Do Not Cross the Line.

05 September, 2013

When I am Undone

When it is too much.
When I am
overwhelmed, or tired and sad. 
When I am unable, unstable, and undone. 
I go, because it will only take a moment to be okay again. 
I go, and I am:
 
Lying on my back
on a yellow catamaran.
I am in Mexico,
and responsible for only myself, 
(and perhaps for my fellow travelers in practical ways, but I am not holding on to their passports.)
 
I am staring up the mast
to the mainsail
and the clearest blue sky I can ever remember,
as we race the sun to the tip of Baja.

or

My knuckles are white from gripping my husband's
life vest,
as we skim across the waters of Lake Tahoe on a wave rider,
and I am laughing and laughing. And laughing.
 
I am thrown off and flying, and laughing
even as I go under the chilly blue of the lake. 
When I emerge,
he is smiling and circling back for me.

20 August, 2013

A Thank You to the Other Tables

Dear Fellow Patrons of Harry's Hofbrau,

You are awesome, and my son thanks you for greeting his whoops and hollers with smiles instead of glares. I am grateful too, as it made eating lunch a lovely date with my son, instead of feeling like a torturous way to get sustenance.

Thank God for people like you, the people who see difference and go back to your own lunch. Thank you for that, for giving my son an entire experience outside our house where he was included in the fold of society without judgment. 

I hope you get a chance to call the people who raised you and thank them for the good job they did. If I had the chance, I'd thank them myself. 

And you can tell all your friends about  how easy it was for you to do something that mattered so much to my family...maybe those other people will see how little takes to make us feel welcome. 

You made my day. 

Sincerely,
The Mom of Another Kind of Kid

15 August, 2013

Clean Up! Aisle Five.

Most writers I know crave a space of their own where they can think, doodle, and hopefully-write. I have an entire Pinterest board devoted to retreat-type spaces that given more time, space and money I would create and use to nurture my soul and encourage my craft. I imagine a life where there are outlets on every wall, and at least four places to sit or lounge, so one could read or rest or write.

It will be a quiet space, except for the sound of rain on the roof, which will never be louder than inspirational patter. It will be cozy, with natural light, and bold colors, or not, and blue walls, or yellow, or white-washed old pine. There will be alfresco dining and writing, and the sounds of birds or perhaps the city. It will be a beautiful space that is just barely big enough to invite someone else in, with room for everyone on the patio. It will be glorious.

Or, what really happened, after years of quaint cafes in Berkeley and surrounding environs, museum spaces in San Francisco, then later, my dining room table... I find myself, in a Starbucks cafe inside of a Target.

I thought it would go the other way, that the more I called myself a writer, the more likely my environment would look like a writer's life was supposed to look. I only started saying I was a writer when my daughter introduced me as one to her kindergarten teacher. It gave me the legitimacy that I had been waiting for, so I am going with it, but what about my retreat?  Where is my awesome chair and the corner couch?
Apparently on aisle 5...just over there, past the underwear and the back-to-school section.

Is it a fall from grace, or me recognizing that I do not need as many props as I used to? The coffee is hot, and the wi-fi is free. I'll take it.

In college I wore the uniform, black, and black. I had journals and fancy pens. I carried a leather mail bag that was so heavy it makes carrying a sleeping child seem like a breeze. I brooded appropriately. I drank black coffee.

I looked over some of my writing just yesterday and was pleased to see that not all of it was drivel, but some of the events that weighed down my being, while not frivolous, were certainly not the forever heartbreak I thought they'd be. I didn't even know what I didn't know.

Some of what I read triggered nostalgia, remembering the carefree time spent out dancing with friends until the bar closed, and smoking on rooftops with no railings, three stories up, in the fog of the Marina. Some of it triggered the feelings of lonely I had, even as I was surrounded by people who cared about me.

I was thrilled to find pieces of my husband, as background, then more, as we went from friends to marriage. I laughed at a crush or two I had forgotten.

I missed my little apartment with the tiny room that was barely attached to the house on Dana Street. I missed my friends who have scattered around the globe, and my little vase I filled with flowers every Friday as a treat to myself.

I missed writing every single night, aware that anything I forgot to put to paper would be lost to time. I wrote with passion, about passion. I wrote about the mundane, and the dramatic, and there was poetry, and lists of character names. I wrote, and wrote and wrote.

The time I am in is always the best one when I look back. Even if it was ugly, it was the best because I survived or endured something and came out the other side. And of course there are all the moments that enlightened and surprised me, those were the best too.

But I just know these are the best of times, with happy, healthy children and husband, and our great friends, and lovely adventures. I need to take care to remember these days.

So this wobbly Big-Box store cafe table will suffice. I don't need a specific space in which to write--I just need to make more space in my head so the words can attach to each other in meaningful ways, and then I need to write them out. I don't want to lose this section of our jumbled, messy, lovely, happy, frantic life over a throw pillow and a tin roof.



08 August, 2013

Pieces of Me at BlogHer13

Many of us have made deep and meaningful relationships that exist only online. I have felt loved, protected, cherished and helped by people who I have never stood next to. And for all of the ways that it has also allowed strangers to call me names, or generalize me into stereotypes that I am thankfully aware, do not apply to me, the Internet has mostly given me a sense of community, a platform to do good works, a way to connect with other people in similar situations, and an ability to carve my life up into little segments where I am able to learn the language of advocacy, friendship, shared interests, or home organization.

And because the Internet doesn't require plane fare, and is rarely guided by a strict sense of time, this community has been available whenever I have needed it, from wherever I am. I'd say, overall, that I am a wholly better person for knowing the people I have met online. Those relationships have depth, and have endured for years, even as some of my neighbors have moved, or families around me have split up.

So then I am walking down the hall of a Sheraton in Chicago and a bright voice calls to me, "Jen! Jen! Hi, it's *so* great to see you!" and I am instantly mortified because I have no idea who this person is...until I read her tag, and wait, Yes! I DO know who she is! And I know about her precious son, and her new baby, and that we have talked about all of these little details of life already, and now she is here in front of me.

I've just met an old friend.

And BlogHer is one of those experiences where you get the feeling that you are always just about to run into a long lost friend, or a new best friend, or a perfect career opportunity, or someone who will make you think differently, or maybe you will just get a chance to hug a person who managed to hold your hand from far away. Or you will be thanked, to your face, for writing something that made a person's life easier, better, more manageable, because something you wrote made their life bearable on a day they didn't think they could get through.

I really enjoyed all the pieces of me being stitched together this year. I got to speak, well, really I was supposed to manage a round table with Ellen Seidman, but of course I spoke a bit, because when, ever am I quiet for that long. And I got to learn, and cry a bit, hearing from Pamela Merrit who is ahead of me in many, many, ways, and helps me see the long road. She's leaving a clear cut behind her, and for that I am grateful.

I got to stay up late and chat, meeting someone wonderful, then spending hours talking about our children before figuring out the degrees of separation between us, (her friend is married to a man who sang at the wedding of the man who was the best man in my wedding....among other connections).

They "liked my schtick" in Chicago. It felt good to be funny, and have people like me being funny, and thanking me for lifting their spirits. I'm sure they would tire of me, but for those short hours I loved making my friends laugh. I love to laugh, and I love it when our table is laughing the most, happy to be stared down by others who are not fortunate enough to guffaw, perhaps inappropriately, especially at themselves.


I walked a million miles, ate a lot of food that made me think I could add a few items to my family's diet, and only had one migraine. While it's true I am an extrovert, I've figured out that expo centers, with their bright white expanses and tall ceilings and two-story escalators, suck at my life force, and I will be happier in the future if more of the functions and sessions are held in the confines of a cavernous hotel, where I have a chance to run back to my room for something, or rest for 20 minutes. (I'll also be happy if, next time, dropped-to-my-room-swag does not include a full-sized Denny's menu with accompanying cupcake cup, and a set of size-your-own-bra cups that we used for many, many other things before leaving them behind.)

I'm glad I went. From the cab ride I shared with a lovely woman who is moving to California in a few months, to the giant pretzel that practically called me names, from meet ups and new friends, from the lunchtime party at a back table, to shutting down the karaoke party (without my needing to get up on that stage and fall over), to the great information, interesting keynotes, and a new friend who made leaving and airport-waiting bearable, BlogHer13 was a great conference.




25 July, 2013

It's Thursday and I'm in Love

It's our 15th wedding anniversary today, and sitting here in this beautiful hotel room in Chicago, I can't help but think that I am the luckiest girl in the world to have my particular spouse... who is back in California minding after our home, our children, and his work.

I knew when I said yes to come to BlogHer this year, that my desire to be a part of the conference would put us apart on our anniversary, and though I asked Descartes if it was okay that I spend our family dollars for me to attend, I wasn't at all troubled by the fact that we would miss being together on the actual day of our anniversary.

And maybe that's why we are still a whole and functioning marriage after all these years? Maybe being able to roll with it,  maybe that's how we will make it another 35 years after this, and perhaps meet the milestone that his parents just passed. And maybe we will make it several more years after that if there is enough good fortune for us to have each other then too.

I am respectful of milestones; they march us through time, and help us take note of how much has been accomplished, how much there is yet to be done, but I have learned over these years, of marriage and parenting, that it is more important that I mark each morning with thankfulness for a full house of health, for a roof over our heads, for milk in the fridge, and to be at peace each night with the comfort of knowing the head that lies next to mine spins its wheels with how to care for me, and our family, as much as it seeks rest from having put those plans into action.

Our marriage isn't balanced on one day a year with red roses and champagne, though I will probably drink some today anyway. If we held it all up for one day a year to be thankful, to show our love, to announce to the world how great our life is together, I doubt we'd have made it this far. Relying on one day to sustain you for 364 more is asking too much of one dinner date. And flowers cut from their vine don't last more than a week, so what then of the other 51? I told him from the beginning, I would rather you love me every day, than try to make up for it once a year.

I didn't worry about being gone for our anniversary because I know how much he loves me on any given Tuesday, or Thursday, or last week. He shows it in the way he calls on his way home from work, a gentle reminder that it may be nearing the dinner hour if I haven't yet thought about what to feed the masses. I can hear it in his messages to me, in the notes about jobs he thinks I might like, or places we should visit together, and in the swift reply, "Yes!" when we ask him to meet us at the park.

He puts away the ladder, the paint brush, the hammer, the duct tape, the everything-I-left-out, without berating me for walking away from an unfinished project, always giving me the benefit of the doubt, that something more urgent must have come up.

He let's me, be me, as loud and brassy as I often am, even as I am trying to be a little less dramatic.  He draws out my humor and sets the stage for me, because he knows how I love to make people laugh.

We have inside jokes too complicated to explain, and share a dark humor, having waded through the piles of life we could not have anticipated. He accepts my need to plan for the worst, and for however often he has expected me to 'suck it up,' he has always held me when I needed it. He expects me to be strong, but knows when to put his hand at my back, and whisper, "Let's get you out of here." He chooses me to be a part of his adventures, and he fills our life with plenty of them.

He does the right thing, every time. Every. Time. And he is a good man--he is trustworthy, kind, and I've never met a child who didn't like him...and babies know about these things. He even eats leftovers.

He is a cornerstone.

I cannot predict our future; the possibilities ahead seem just as implausible as where we have been, but I know that I am thrilled to see his face when he walks through the door each evening, and melt when he wrestles our children amid a pile of pillows. I look forward to date night like it's the first  time he's ever asked me out, and savor the feeling of being seated beside him in the car, undecided about where to go or what to do--As long as I am with him, everything else is going to work out just fine. It's true. Just watch.

It's more than I thought I'd have. For every young vision I had of my future, this part, my marriage, this man, it's more than I thought I'd have. More depth, more laughter, more big ideas, more feelings... it's more fun than I imagined.


Cheers to you my precious husband. Cheers to us, and what we've built and sustained. May we have so many more years together that we forget each other's names.

You can just call me "dear," and hold my hand.



You're my back bone.
You're my cornerstone.
You're my crutch when my legs stop moving.
You're my head start.
You're my rugged heart.
...
And long after you're gone, gone, gone.
I'll love you long after you're gone, gone, gone.  

Phillip Phillips - Gone Gone Gone -  Live NY PS 22







15 June, 2013

In the Making


myGirl at about 6 months
She's seven. Seven. and I can't imagine that she is already seven and that she is only seven because she is both my little baby, in a pink onsie covered in a Sock Monkey print, and she is this spunky, punky, vivacious, perfectly wonderful being, who is wholly a person apart from me.

Her sense of humor is sharp, but not mean-spirited, and so often perfectly timed that I wonder if I might hear the roar of a live, studio-audience behind me. Sometimes I can't even laugh because I am so surprised by her wit, and so proud that she is carrying on the family desire to make others smile. And, honestly, I love that I can tease her, because that is my natural state, and it makes parenting her easier.

She has learned to find humor when she could be very sad, or irritated, or exasperated. When her older brother walks fully-clothed, and shoed through her freshly filled blow-up pool, tracking mud and dribbling rocks, she admonishes her brother for getting his good shoes wet, not for ruining her swim party. When it was discovered that 19 of 20 fish in her tank had died overnight (another post entirely), she looked like she was going to cry, then pointed to the last fish, and said in a low voice, "Mur-dur-er. Murderer!" She stomps her feet when she doesn't get what she wants, and begins to whine with a tone that tears at my eardrums, then stops, centers herself, and drawing her hand from face to chest calls, "Aaaand SCENE!" and thanks her audience.

She loves dolls, well, as of right now she loves dolls, and while I do not understand it, because it is so unlike how I played as a child, I am trying to appreciate it because I know it will go away, just as her round baby face has already begun to turn oval. Her taste in entertainment has her singing songs beyond her years with lyrics that her precious head automatically makes into child-like phrases, and she devours new trends, encouraging our car filled with little girls on the way to wherever, crying out, "Tonight is the night, we’ll fight 'til it’s over..." and lifting up her arms they all sing, "So we put our hands up like the ceiling can’t hold us. Like the ceiling can’t hold us!"

She is grateful most of the time, polite when she is away from us. She cares enough to be dressed appropriately for the event, but can let it go and run out the door without wondering what people will think. She has a sense of fashion that exudes confidence, she wears camo and pink like she invented them both, and was undaunted by a cast she wore for six weeks this year.

She's sensitive, and is deeply moved by precious babies, perceived oppression, and the idea of loss; her pain in having her best friend move to the other side of the planet was palpable to anyone who witnessed her talking about it.

She meows sometimes, a little bit like how a friend of mine says "woof," which worries me some, but only because I am not fond of cats. She loves to cuddle up each morning, and still finds it amusing to hide in our bed, and surprise her dad waiting under the covers if she can sneak in while he leaves the room. She loves the drama of "the big reveal" of almost anything, and applauds others' efforts even when she wanted something else to happen.

She understands that where we put our time and our money shapes who we are, knows the names of the states in alphabetical order, and, as much as I can't stand it, still requests to watch America's Funniest Home Videos. Her thirst for media is rarely quenched, and her brain has trouble shutting off at night. Somehow she can still be soothed by my voice, singing softly in the dark; it humbles me.

She likes to know what information is fact, and which is opinion before deciding anything, which sometimes wears her out. and she carries too much sometimes, chasing issues that are not problems for her to solve. But she is made of the best parts of us, and in her unbroken, seamless state, she remains filled with a persevering light.

 ***

Happy birthday babyGirl. You are my best favorite.

17 April, 2013

Written In The Stars

My blood pressure just shot up so high I was seeing stars.

Calm house, homemade broccoli beef, Jake's aide on time and helpful, the wind has finally died down. Things were going so smoothly I was able to sort and file papers.

Then after dinner and a nice warm shower, Jake's voice just exploded through the house, from silent to AC/DC-Highway-to-Hell loud. Yelling! Yelling! And he was crying that high-pitched cry that ends in an almost-sob. And he was running around the upstairs and throwing himself to the ground, dropping on his knees so hard I could hear the arthritis he will have later in life.

His arms were out-stretched, and too wide for the hallway, his hands bumping into bookcases and backpacks, and his gait was manic. He needed every inch of space we had, and then some. It was like he wanted out of his own skin.

Lucy came over to me and said, "I know this must make your heart ache Momma, because one of your babies is so sad. My poor brother, he must really hurt. He's so sad."

So, so very sad. I haven't seen him this upset now that he is this big. A three-year old dropping to the ground is very different from a 5'1" tween hitting the hardwood floor with his whole body.

He ran down the stairs, past the aide who has seen this before, but probably not to this extent. I could hear his feet sliding across the rise and run of the staircase, and I willed him not to fall into a broken heap at the bottom. I prayed he would not be there crumpled on that tile that I hate so much.

I got him to his room, and he jumped on the bed, and ran and hit the walls, and hit his head with his hands, hard, so hard that his temple was pink. My sad boy.

I asked him to slow down, to let me think about what the problem could be that had come on so quickly.

He stayed still a moment, waiting.

"Do you want medicine for your head?"

He leapt out of bed and clapped his hands together, still yelling, but it really seemed like he was clapping in approval. This acknowledgement starts out like that first slow clap in an audience, when they just aren't sure of what they've seen, or heard, or if the moment is too reverent or wrong to disturb, and then it is faster, and insistent. He clapped his hands at me and ran to his bed covering himself with his comforter, then hopping up to get another drink of water from the cup that  he had spied on his dresser.

I went to the cabinet and got a Maxalt, a migraine drug that is fast-acting, and melts in your mouth. Back down the stairs I opened the little air-tight package in front of him, and seeing what it was, he opened his mouth to take it. Another sip of water and he turned from me.

And then I got sort of lost for a moment. 

All I could see were stars. Stars flying and dipping in front of my eyes, shooting across my field of vision like a sparkler that is too close.

I am thankful that there was still another adult in the house in case I was the next person to have a crisis. I was also glad that I purchased a blood pressure cuff years ago when I was pregnant with Jake; I was such a worried mom back then.

I went upstairs and checked my blood pressure and my systolic (the top number) had jumped by 25 over the highest number I can remember ever having, and the lower number, the diastolic, was up 20.  My pulse rate was high, not burn-balories high, but high.

Twelve minutes after Jake took the medicine he his splayed out on his bed with his head shielded from the last light of the day, by a mile-high pile of pillows and blankets. He stills

Lucy and I just made a last check in on him, because quiet can also make a Mommy scared. He is safe, and almost asleep.

My blood pressure is almost back to normal, my heart rate has dropped. The aide has gone home, with assurances that if I need to call her in the middle of the night, I can. Lucy is coloring, happy that her brother feels better. Jake sleeps.

Night has fallen, the house is quiet, and out the window, there are stars.




19 March, 2013

When Everything is Just So Big

Every once in a while it feels like our life is filled with VERY BIG things, and nothing small at all.

I expect small problems all the time. This world is not set up for people who are outside the norm, and we have disability, precociousness, and we are all way above the average height, just to name a few ways we're different. So I expect that we will have trouble finding a parking place that doesn't endanger anyone, and need to load a wheelchair in and out of a car, adding ten minutes to any "quick trip." I expect that I will need to explain a grown-up concept to my always-curious daughter who understands just enough of something so as to require more information. I assume I will need to scope out a restaurant before we commit to going in., and if we're at home I might need to spend 8 minutes adjusting the chair my son sits in to eat. It seems I regularly need to spend some time in conversation with my daughter covering the topics of equity, fairness, ability, and picking up after yourself. Little things.

But right now, it's all so big. So here's one big thing:

I need to buy a new car. Not "I want to", or we are "thinking about it", I must buy a new car because my always reliable Toyota Sienna minivan had "sudden unintended acceleration" (SUA) a few weeks ago. While I was able to keep the car under control, and did not injure anyone, I can't ever trust that the car will be safe enough for me to carry my babies in it again. What if we had been on Echo Pass? or on the tiny switchback-turny road, Old Priest's Grade? I needed a full left turn lane, about five car lengths, to realize what was happening, get it into neutral** and apply the brakes. Maybe I stopped in four car lengths, but regardless, on a mountain pass you just don't get four car lengths to get your car under control. And what if I hadn't been driving? Jake's aide already told me she wouldn't have known to put it into neutral. If I had not gained control I would have hit the center divide and a light post on the opposite side of the intersection, or God forbid another family in a car.

Toyota cannot duplicate the problem with my car, and they have let me know several times that it was most likely "floor mat entrapment"(meaning that my floormat got caught under the pedal and kept the accelerator depressed). Lord knows I would be thrilled if that had been the problem, because then I would just take out the damn floor mats and continue driving the car that we just spent $4000  to repair (because we, very responsibly, had decided to drive the car for 4-5 more years since we own it, and it still has a perfectly good engine).  But I know it was not the floor mats. I've had that happen to me in another car, and the feeling in the Sienna, when it began to accelerate without me pushing down in the pedal...this was a completely different feeling, a terrifying, out-of-control feeling.  And now that I know what it feels like, I can recall, very specifically it happening two other times. (All three times I was on a flat road, moving from right to left, accelerating by 10-15 miles per hour, with my turn signal on, and the temperature outside was in the mid-seventies. Does that help your engineers Toyota?) One of those other times I called my husband right after it happened, and told him what I thought had occurred. When I was on the freeway, accelerating a little bit more than I wanted to, it was less noticable than on a city street. It calmed down and went about driving normally. Those other times I let it go and called it a fluke.

But here's the thing, after I got the car to stop safely, this last time, I tried to restart the car. In my hyper-alert state of mind, I decided to get the car out of traffic so I would not cause any accidents. Of course that is a crazy idea to drive the car right away, but that's what I was thinking I should do. So I restarted it. Twice. And both times, without my foot on the accelerator, the engine red-lined to about 7000 rpm. Both. Times. That means that the car was still in an "unintended acceleration" state, just not in drive. That's when I got out of the car, took the keys out, and stood outside of what once had been the car I used to shuttle my children, haul groceries, and road trip with every weekend. My car went from being a reliable part of the family to being a 2 ton pile of angry metal, bent on self-destruction, and happy to take me on a ride with it.

And so, I will not go into all of the detail of how poorly Toyota has communicated with us, how not-helpful they were, how I had to actually pay for the rental car I used while my car sat around their lot waiting for a Toyota exec to come out and look at the "customer-stated issue" Since they couldn't duplicate the problem in all of the 11 miles they drove the car, they have declared my car as having "no issues." Which is fine for them, but completely not fine for me, or my family.

So I'm not just thinking about buying a car, I need to get a different car, right now because we still have all of those things to do that we always need to do, like get to school, and to the store, and to the doctor's office.. And now I need to figure out all of the things we need to consider in a new car, and buy one on a compressed time schedule. We chose that Toyota on purpose, because it fit Jake's wheelchair across the back, has all wheel drive, has a low threshold to get in, enough leg room for our leggy family, room for seven passengers, a roof rack, and sliding side doors that slid at the press of a button.

Guess how many other cars have those features? None. No other car in the US market has those features. Toyota makes that car. It's the Sienna, and had they handled the situation differently, I might feel like they cared about my family. If they said, "Let us take that car right now for full blue-book, here is a new one with zero-percent financing, and we have no known issues at all with the new Siennas." You know,  I probably would have considered it as my first choice. I had enough confidence in that company that I would have considered a newer Toyota right then if someone had just pretended that my family mattered.

My first ride, as an infant, was a Toyota Corona which was so new to America that I hear it had bad translations on some of the buttons in the car. I took my driver's ed course using my Toyota Corolla LE, and that little blue car took my Momster to graduate school, and my sister through her first years of driving. I've owned an FJ-60 and a newer LandCruiser. Basically I've been driving Toyotas for twenty-five years, and because I am just that nostalgic, I am sad. But mostly I am so angry with Toyota Motor Corp for not recognizing what their neglect has done to ruin their brand in my mind. I really wanted someone to care, a little, about the person who has held title on four of their cars over the course of more than half my life.

What kind of company takes a week to check on your possessed car, then makes you pay for the car rental? What kind of company says "nothing is wrong" with my car, then calls a couple of weeks later and offers to buy our floormats so their "engineers can work with them." (Even though I have explained clearly that their was no floor mat entrapment.)

So now buying a car is more than just a "whoo hoo I have a great life and I get a new car!" It's all wrapped up in me feeling safe again, and ensuring that my kid with disabilities can be comfortable in the car, and figuring it all out quickly. Changing brands after this many years is harder than I thought it would be, but I think we have decided on....a Ford Flex. In fact, it may look a lot like the one below.


Ford has been awesome on Twitter answering questions, offering to set up test drives searching for cars. It's not an expense we planned on, but if everything works out it will be a great thing for our family.

So long Toyota.





 **In an SUA situation, in newer cars, pressing your engine on/off button may work but you will probably lose power steering and brake assist, making the car difficult to handle. In older cars, turning the ignition off at the key has the potential to lock the steering, and is not generally recommended. I stomped my foot on the brake to the floor, put it in neutral and continued to slow the car. The car made a very terrible sound engine against breaks, and worse in neutral and park with the engine roaring at redline. Here is an Edmunds. com video that discusses what to do in the case of a stuck open throttle.
People who drive a stick would probably naturally put in the clutch and put the car in neutral.  I am very thankful that I knew what to do, and I specifically want to thank my Dad, Jack T., and Jennifer and Greg for insisting that I learn how to drive a manual transmission car. I know I was a terrible student, but obviously you were very good teachers.



27 February, 2013

Tell Me A Little Something

Jake is considered non-verbal. I used to say pre-verbal, but then I realized that was just as insulting, and probably less accurate, since I do not expect him to speak in a clear manner that will be medically or academically recognized, and quite frankly, communication has always been the goal, not speech. But he does say words occasionally; they pop out of nowhere, and they are clear and relevant, and almost always said with a wit that indicates he has a lot going on inside that big brain. He responds to people speaking in Spanish, at about the same level of interest as when he is spoken to in English, so that makes him non-verbal bi-lingual, which is great, because it would be nice to have someone in our house be fluent in Spanish. Whatever way you call it, Jake does not share his thoughts in spoken sentences.

So I do my best to hear my son. I listen to the way he is tapping his hand on the counter to know whether he is bored or wants more of something. I hear him shuffle through the night around his room, having had his blankets fall off the bed, or become too entangled for him to wrap them around his body. And when I cover him up again, hoping that the fleece blanket will stick to his fleece pajamas, I can hear his "thank you", said with his own little chirp, that tells me he is happy and that is all that he needed. I know what joy sounds like. It can't even be typed, but there is a sound that Jake makes as he is set free from the house and let loose upon the sunshine of the day. That sound makes everyone smile. We know what "happy sounds" are. We look forward to the "doot doot dooot doot" part of the evening lately when he wants to wrestle on the couch, and laughs a lot.

It's harder for me to hear him in distress. It hurts me, several times maybe, once because I am his mother, and I am supposed to feel an ache which calls me to make my child okay when he cries, or he shows signs of pain in his voice. Then it hurts again, not exactly because I am irritated by the shrill sound he is making, but because of the tremendous disappointment I have in myself for having such a low tolerance for this part of his voice; I want it to stop because I can't do anything well while it happens, including finding a solution to soothe his urgency. And I am hurt again, because I have not figured out a way for Jake to communicate his needs more efficiently, and thus feel I have failed him. And then again I am pained when I realize that I have made his distress all about me, when no matter what I am feeling, it must be immeasurably worse for him not to have a way to communicate what he needs to me, or be physically able to fix his issues on his own. Distress is hard, but we are working on it, working on asking the right questions up front: "Does something hurt?" "Is it your body that hurts, or your feelings?" "Do you want medicine for your head?" And generally, perhaps because there is better incentive, Jake answers by touching my hand quickly so he can get what he needs.

What's interesting is trying to figure out how to hear him in a regular moment... not one of great joy or sadness; it's difficult to understand his side of the conversation when he is just being. When he is quiet in the car with me, I am often quiet too instead of asking him questions about his day which I know he cannot answer. I don't narrate the world around him as I did when he was a tiny boy, and everything was new. So we ride in silence, or sit in the quiet house when it is just the two of us. Most people don't think of me as the quiet type, but I admit that being alone with Jake can be so very calming because I am not talk -talk -talking the whole time.

It is always a relief when we figure out, in retrospect, what Jake has very clearly been telling us. We went to a restaurant the other day with Descartes' parents, and as we were getting settled, Jake half stood up, and made several rather large noises. He was reminded to use his "quieter voice" inside, but he insisted once more on calling out. That's when we saw Papa turn and walk towards us and his seat. He was joining our table, and had walked past us. Jake had seen him as he passed, and began calling out as he headed for the door. We had missed him, but Jake hadn't. Once we understood, it was so obvious that he had been calling out, "Here! We're here!" Jack sat happily, for the rest of the lunch once we were our little group again.

We all had a good laugh, and apologized to Jake. I find myself apologizing to him a lot, for not listening, for misunderstanding, for not understanding at all. I'm hoping that he will continue to know that we are all trying.

I know we approach his sounds and behaviors with a different level of respect than we used to. I expect that he is trying to communicate something when he comes to me, because it is obvious to me now, that separating himself from whatever he was doing, so he could be right next to me is intent, and if you can't really call out , "Hey Mom. I need you over here." you would need to walk on over. So when he takes my hand, I go where he leads me... I am excited to know what he wants to have happen next.

At a busy toy store last week we wandered the aisles looking for the perfect gift to give to a little boy. Rows of books, and stuffed animals, toy trains, play structures, and tricycles, this place has it all. After about half an hour, Jake extracted his hand from mine, but did not shoot away in escape mode. Instead, he took my hand, and I told him I would go with him where ever he wanted. He very calmly led me to the back of the store, to an aisle we had not walked down, but to a section you could see from where we had been looking at games earlier. It was a row of car seats. He walked over to the largest one, and started to sit down, or pretended to, or something. I asked, "Are you trying to say you want to leave now?" He said, "Yea-aHHHH." and I congratulated him on such a smart way of telling me without running towards the door, or throwing himself down in a way that would get us to leave quickly.

I looked over and a young clerk had been watching us, gawking really, but I caught her eye, and said, "He doesn't really talk much, but I think that was a very effective way to say he wants to leave, don't you think?" She let her jaw drop a little, and said, "Whoa. Cool."

Yeah, that's what I thought too:

Whoa. Wow. Yeah. Cool. I can totally hear you.







18 February, 2013

I Resolve to...

To honor number 7 on my list below, here are a few of my resolutions a full month and a half into the year. I figure I just finished packing away the Christmas decorations, so I am right on schedule.

New Year's Resolutions:
  1. Don't hold myself to anything I write below, but at least try to do a few things.
  2. Clean out the refrigerator once a week.
  3. Use up the amazing selection of cans and jars of things that fill my pantry.
  4. Be thankful I have full pantry.
  5. Use kinder words when I am frustrated with my daughter.
  6. Use kinder words when I am frustrated with myself.
  7. Get over myself and just hit "publish."
  8. Stop taking everyone's hand-me-down things, unless I actually have a need for the item. 
  9. Cull the books. They are multiplying.
  10. More water. 
  11. Call the fence guy.
  12. Kiss more often.
  13. Close the laptop sometimes.
  14. Throw it away, give it away, or put it away.
  15. Work with my son on using a fork.
  16. Wear my body confidently, without fear of judgement.
  17. Drink more tea.
  18. Call my mother before she sends the email asking if I am alive.
  19. Get passports for the kids, and make a plan for an adventure.
  20. Take more pictures, because so many good things are going to happen and I want to remember it all.
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