21 December, 2010

Lead me to the Gate

We're happy around here. Vacation for the kids has begun. Descartes is taking some time off. We'll see family, and snow, and the beach, and most of our Great State as we traipse up and down in our all-wheel-drive van. If you ever buy a Toyota Sienna... pay extra for the AWD. It is so awesome to drive right up and through those chain control check points.

We had Thanksgiving at our house this year. My Tahoe family came down and Descartes' parents came across the bridge, and we had a lovely, lovely day. My sister made most of the food, or maybe she didn't, but since she brought food from Tahoe, beautiful home-made food, and then she helped me here, I think she did most of the work. Descartes' parents were precious with the kids, of course, and they had fun decorating the Turkey Lurkey cake.  This was not a tradition I had growing up, but it is a great way to entertain the kids, especially right before dinner is served when every one is antsy. In our family you frost a chocolate sheet cake (okay Descartes' mother does all of this...) and you let the children coat the entire thing in candy, with the goal that the cake look something like the Turkey it was cut out to be. It's really gross, and awesome, and sickeningly sweet. The tradition we have added with this generation is that I let the kids eat a piece of that cake for breakfast the next day. I love being that kind of bad mom.

There's lots of new lately. Mostly things look the same, and certainly to the untrained eye, to an outsider who doesn't notice the nuances of our life, nothing looks different, but there are some great things happening.

Late afternoon on Thanksgiving day, when it came time for us to say goodbye to Cookie and Papa, Jake was very upset as we shut the kitchen door, and watched them walk away. The little kids wanted to walk the grandparents to the gate, and as I said yes, it occurred to me that Jake probably wanted to go too. So I asked him, and he said, "Uh ye....ah!" So Jake went to the gate. The little guys peeled off to play before they even made it down the back steps, but Jake went to the gate and stood there until he saw his grandparent's car drive away. And as the car passed by the gate he raised his hand, a sort of mix between a salute and a wave. And when they had driven off he turned around and walked down the breezeway and back into the house.

Relationship. Social awareness. Understanding family dynamics.

We're also seeing something else that seems like no big deal to most families... Jake is beginning to lead people to where  he wants to go. He took Descartes' hand and pulled him, gently, towards the door in Tahoe because he so desperately wanted to go outside. He took Squid's daughter Iz's hand and walked her around the entire bounce house party. He took Uncle Jaster's hand and led him to the door (once again.. that boy really likes playing outside!) He took my hand just today and led me to the breakfast counter for a snack.

Communication. Intent. Calm insistence. Proprioceptive awareness.

And he's been snuggling. Really snuggling, on the couch, in the bed, and nuzzling in when we give him a hug. This month we've spent at least two rainy days snuggled on the couches in the living room, watching his favorite show MythBusters, or a movie. It might make us a lazy family, but we are trying to let Jake lead. I watched almost all of The Princess and the Frog with Jake at one end of he couch, and me at the other, or feet snuggling and twisting under the blanket. And just this weekend he took a rest with his head on a pillow between Descartes' and mine, for almost 40 minutes. He had one arm around his dad's arm and his other around my shoulders. We were closer to him, for a longer than we had been in years- years.

Affection. Preference. Increased attention span.

We have seen so many little things that amount to such big long term changes. He has been happy and healthy and present, and it has been wonderful. In this season of thanksgiving, I could not be more grateful.

We head out tomorrow to Southern California. The rain should be plentiful, and the food delicious, and seeing family will be wonderful in spite of the obstacles of changing our routine and leaving all of our comfort zones. If nothing else, our family loves a good road trip. Although there is one other thing Jake has been doing lately...bugging his little sister. Very normal brother-sister teasing: sneaking a single cookie out of her bowl when she walks away, taking her doll in the car, and laughing when she throws a fit, or tapping her arm until she gives in and shares her snack on a road trip!

23 November, 2010

My Tiny Babies

They were never small, either one of them. My kids have always been on the long/tall side, and while skinny compared to the rest of the family, they are both strong and healthy. They have grown a lot this year, both emotionally and physically. The big trip gave us a nice grounding moment before the school year shook us by its tail, and this week of Thanksgiving will be another touchstone to remind us of how wonderful it is to be a part of our family.

I've been purging the house. It's eight years overdue. We had a lot of things to begin with, then we had Jake and I think I just never got rid of anything that was still useful ever again. I have too many sheets, towels and pillow cases, hundreds and hundreds of books, more shoes than Imelda. I went through 13 boxes/plastic bins filled with my children's clothing, and more than two bins of their shoes shoes. I sorted them all by size first, then called friends so they could place their orders. One family wanted 2T warm clothes only, and possibly some size 8 shoes. I pulled out the next sizes for my sister's boys, the items that Princess Lucy won't wear because it looks "too much like boys." (She does love camo though!). Then I went through again quickly and picked out things from each bin that had I had little memory of a kid wearing it, or at least I knew I wasn't emotionally attached. This sounds ridiculous even as I write it. Who gets attached to a cheap Hawaiian shirt or a blue dress with apples all over it?

I can remember something about almost every single item in those 16 crates. I can remember that Jake wore the beige sweater with the little red zipper on the Golden Gate bridge. I took a picture of him, and I was so scared his little ataxic body was going to lunge and leap over the four foot barrier and land in front of a car or worse, go over the side of the bridge. The stripey sweater he wore in Montana, the last time we went vacationing with those close family friends before our marriages went in different directions. Jake got caught on the barbed-wire fence at the edge of the property. I made a new land speed record that day rushing over sage and dirt to get to him. By the time I screeched to a halt, he had slipped out of the sweater, calmly pulling his body down and out, leaving a striped scarecrow on the fence.

Lucy came home from the hospital in the pink onsie with snaps up the front, and monkeys printed on it. And the little blue and white dress with the duck embroidered on the front? Cheezy I know, but she  wore it on her first visit to feed some ducks at a nearby park. The multi-color sweater with the hood? I bought that the day the ultrasound revealed that Lucy was a girl (and then with the worst kind of buyer's remorse, I worried that I had somehow overstepped a boundary and had invited misfortune into our lives, jinxing everything.)

I remember buttoning and zipping and folding and maybe even ironing so many of those tiny clothes...but only as I look at them again. I think this is how my brain works: an event occurs, a good thing, a bad thing, any thing, and I remember the event for a very short amount of time. But apparently I really do remember it because it gets stored in a long-term memory section of my brain, only to be released again when I see the sweater, the street sign, the wedding invitation, the pen, the shoes. I use objects as external hard drives. If I don't see the object, I'm afraid all those memories will be gone.  Now I know I sound like a crazy person.

There's another thing happening as I clean out all of these things. I get closer to the corner of the closet with the baby crib.

Baby. Crib.

It is beautiful. Jake stayed in it until he was too tall and I was afraid he would tip over the rails, and Lucy jumped out the day before her first birthday, prompting a hasty trip to IKEA. We packed up the crib and put it in Jake's closet.

Every time I open Jake's closet door I have a flood of memories looking at those beautiful wood slats; Jake finally pulling to a stand in his sunny bedroom with yellow walls, when we thought he never would, and Lucy jumping up and down yelling MAMAMAMAMAMAMA to get out of bed. I remember Descartes and I putting that crib together, and arranging the room before Jake was born.

Now getting rid of that crib would hardly remove all of the beautiful memories I have of my children as tiny babies but there is something keeping me from passing it on to the next family. At least I thought there was; I thought that our family was not complete without another child.

This whole time, I've had this crib in the closet, thinking that we would change our minds and have another baby. Getting pregnant with Lucy was a big decision after Jake, and though we thought we would have three or four children, I've realized (after some long discussions) that I am not really missing having another person in our family, and I cannot actually imagine where or how another child would fit, into my heart, or our home, or our schedule. I just don't have a hollow any more, and I know I used to feel that ache, as if we were not complete--but my heart is full now. And we are whole, and happy and as hard as it feels some days, we are on track. 

***

What I am wanting, what I confused with wanting another child, is that idea of fresh and new, and possibility. It's that whole hope thing again...and while we're at it, I want that fearless part of me back. The woman who was carrying a perfect child and made sure we bought a house near the best elementary school. The woman who read Thoreau, and C.S. Lewis to put that beautiful boy to sleep at night. The woman I was before I broke my leg on the front stairs and had to ask for help, really, really ask for help for the first time in my life. I am trying to get some more pieces of that woman back, and somehow I mixed that up with having another baby, because while I do like myself now, I really did like the woman I was then too--she was awesome, and she knew it.

10 November, 2010

Is There a Pill for This?

I've been working on a post for The Thinking Person's Guide to Autism on why we chose to give Jake medication to address his ADHD symptoms, and how to go about it if you think your child might benefit.

The thing is, as I keep working on the post, and I've been opening it and writing, deleting, and writing again, every day for over a month, I find that it is really not my best work. The language is stilted. There is no flow. I can't seem to get the words out, or clarify my message.

Last night was a restless one for Descartes and I. I could tell at about 4:30am that neither of us was sleeping. But just in case I was wrong, I let the silence surround us, as I am NOT wont to do. Silence is so heavy for me. It forces me to think for myself, instead of bouncing my ideas off of other people, gauging their reactions. It forces me to be my own company, which makes me think about what I like and do NOT like about myself...and then how I want to change those things, which inevitably leads me to thinking about how I need to do more for my family, for my friends, for my work. I form to-do lists at 5am that I will accomplish TO-DAY! for the projects I dedicate my mind to.

So this morning in the darkness I tried to work through what was bothering me about writing what would appear to be a simple post about the medications I give my son, why we do it, and how to do it. I think I am worried about the judgment. People, myself included, are so quick to judge others. It's how we determine friend or foe, helpful or harried. We make snap decisions about people all the time. If we have grace, or empathy, or something other than outright narcissism, we might consider why another person is behaving in a certain manner, and hold our harshest judgments, or our condemnation, but sometimes we just judge and move on.

People, individuals I know, and talk show pundits, and magazines and teachers have judged my family and our choice to give Jake medication, and it is painful to think that others might view me as the type of parent who would cause my child harm. What's worse is that I judge myself. I know we've made the right decisions.. I know that we have, but a part of me questions the ethics of giving a non-verbal 10 year old medications, which alters his mood. He can't tell me when he has cotton mouth. He can't tell me if it is making him feel anxious, or if he's not eating because the medications remove his appetite, or he ate a big snack at school. And I have found myself thinking that many children are mis- or over- diagnosed with ADD or ADHD, when all they really need is some more stimulating way of teaching to keep their attention focused on learning.. or maybe they just need to have P.E. in school again to run some energy off some of those antsy legs.

But I don't want to share that part with parents who are trying to figure out if pharmacological intervention might help their child. I only want to tell them the good parts, about my son's overnight ability to sit in a chair, or go to brunch with his grandparents again. The way he can make it through a five hour flight to Hawaii, and dinner. I want parents to be unaware of those harsh judgments, so they can get to the point of helping their children, because in spite of those naysayers who tell us we have made up ADHD, some children will benefit from medications like this.

The Thinking Person's Guide to Autism is filled with fact-based information. Science. Truth. Honesty. It is already helping families and has opened communication with adults on the spectrum. I know that an honest account, of all my emotions, will be the post that reaches the most people. I just want to balance all of that negative- the negative in my own mind, and all of those harsh words around us, with all of the possible benefits, and somehow write all of it down, without being judged.

or, as I have often done in my every day, going-to-get-through-this way, I suppose I could just do what I need to do and let the critics say what they must before they move on... because they do eventually move on, and what always remains is the best decision I can make for my family at the time.

08 November, 2010

Mad Woman Takes a Pause

I am cleaning out my bookshelves and the kids' drawers trying to make room for some peace in my life, and I'm actually getting somewhere. I think I am giving away about 100 books today. I'm feeling like we need a good clean sweep of things.. of everything to keep our family headed in the right direction.

Just now I made the mistake of opening a journal from 1995. I probably should have just thrown it out without looking, but decided to read a bit instead.

Wow. I dated a lot that year, which makes sense, because it was the year before I started dating my husband. I had forgotten the drama, and the highs and lows of that young single life. It made me ever more grateful for what we have now, however hard some days are. I did a lot of dancing, at least twice a week, and a lot of falling head over heels for the wrong guys. From the looks of it, I had good friends and I worked all the time.

What was fun to find, along with poetic descriptions of rock bands and smoke-filled cafes, was a list of descriptors that I think I was putting together to use as part of a checklist for a spouse. It is interesting to see the things I valued then...not only did I find most all of them in my husband, but I actually still value those traits today.
smart outdoorsy humble
handy eloquent friendly
opinionated kind reserved
private stubborn appreciation of the arts
sense of humor passionate solid
ambitious compassionate social
strong witty dedicated
educated family oriented committed
amusing

When I made this list I had already met my future husband, and I wonder how much he influenced the list, considering how much time we spent together that year (as friends). Did I really put stubborn down as a trait to look for? Maybe I meant, not a pushover, or with conviction?


and now, back to work.

01 November, 2010

The Hat Makes the Man

I don't really like Halloween. I'm not sure when I started not to like it. Maybe it was the pressure of coming up with a great costume; jeesh, I had the kind of friends who dressed up as green m&ms and other cool things.

Maybe it's that I was raised to think that I was  destined to be hit by a car while trick-or-treating, or that by the time I got to college, it was expected that all females would dress as some sort of sexy version of normal things: sexy vampire, sexy nurse, sexy meter maid, sexy butcher, sexy Cal-trans worker...although I did the Castro thing in the late 90s, and I had fun (and yes I went as a sexy cowgirl).

and now I'm a mom, and so I do Halloween. I am anxious about it every year, that my kids won't have the right costume, that they will look back and think I didn't do enough.. it will somehow be obvious that I can't wait for October to fly by.

Share photos on twitter with Twitpic
scary girls, scary babies
But enough of all that... we DID do Halloween this year, and not only that, but it went well from costumes to school parties to trick-or-treating.

We went to the Halloween store a few weeks ago in the search of a costume for Jake.  We've done several years of those muscle costumes where the fabric is stuffed with filler to make the kid look big and manly. So far, he's been the Hulk, and Superman and Mr. Incredible, and Spiderman and I can't remember what else. They are great, easy costumes (which end up in the dress-up box later!), but we couldn't find one we liked.

We found a lot of scary things that someone, not us, might set up around a house, but the costume selection was not all that great for tween boys unless you want to wear a mask. We didn't find anything reasonable that night, although my daughter very sweetly let me know that I my legs would look great in this costume:
I love that my daughter thinks I look like this

Share photos on twitter with TwitpicWe carved pumpkins with Descartes' parents last Sunday, which was fun, and made me remember that I carved pumpkins with them the first year I knew them in 1995. This year the carved pumpkins didn't last until Halloween. We enjoyed, okay, I enjoyed, watching Hello Kitty slowly melt and be consumed by mold. It was less fun to clean it up, but I have a wonderful husband who took care of that.

We finally found costumes for both kids. Lucy went as Belle, and Jake went as a cowboy. Picking out Jake's costume was really very fun. Descartes, Lucy and I each picked one or two costumes we thought would work for Jake, then presented them all to him. He laughed and laughed, especially when we each tried to convince him to choose the costume we were holding. We got it down to three, then two, and he finally picked the cowboy outfit.


Both children had school parties/parades... Lucy first... my galliwompus little Belle, who could barely hold still long enough for me to brush her hair. She actually said that her head was going to pop off because she was so excited about Halloween. For trick-or-treating on Sunday night she had to put on a long sleeve tshirt under her dress. I love how Northern California kids just suck it up and wear jackets or layer to keep warm. There's no complaining like we did when I grew up...oh, all that moaning I did about how the shirt or jacket was going to ruin my costume.

The best story of Halloween may be as simple as a hat. Jake wore a hat. JAKE WORE A HAT!

He apparently wore his hat almost all day at school on Friday. Certainly he wore it the entire time Lucy and I were with him when he went from classroom to classroom collecting candy. He also wore it on Sunday trick-or-treating. This is so huge. He's also been wearing his helmet when he rides his bike at school, and all this after he wore a helmet horseback riding this summer.

I know he's getting older, that he's learning every day, gaining new skills, but I think I have just let go of some things. When we realized that Jake hated hats (and gloves) we knew that we were not going to move to any place less temperate, and I sort of stopped worrying about it, and stopped thinking about it last winter. It is exciting to be able to check that box off. We still have a long way to go before he's wearing a baseball hat to keep off the sun, or a knit cap to keep warm, but I'll take several hours of an ill-fitting cowboy hat. It's a start, and we like starts because that means at least we are on the same road.

yes, Gus has a costume on.
awake and happy the entire time!
Sunday night we went through the neighborhood with a couple of other families. Jake went in his wheelchair, for safety, our peace of mind, and the fact that he normally goes to bed around the time most kids start trick-or-treating, so we expected him to get tired. Lucy was very precious, as she asked for another piece of candy for her brother, if we couldn't easily wheel the chair to the door. Later, she just took half of whatever she had been given and put it into his bag rather than ask for more. She gets extra points for that because that girl loves candy like no one I have ever seen.

Everyone made it through the trick-or-treating..no tears, no complaining, no melt-downs...we have bags and bags of candy, and no sick stomachs. Both kids are sleeping now, (although Lucy is next to me on the couch) and I am a grateful woman who just might like Halloween a little bit more this year.

13 October, 2010

Posted By Popular Demand: Cake

It is my sister's birthday next week, so while she was visiting this weekend, in between the reveling and the beer-making, and the beer-drinking and the concert-going, I made her a cake.

A few of her favorite foods in life are mayonnaise, chocolate and apparently Bordeaux chocolates from See's Candies..that last one I actually didn't know about when I chose which cake to make her, but this cake sort of managed to hit all those sweet spots.

I remembered that I had read about a World War II era cake that used mayo instead of eggs and shortening because as two of you may recall, and a few more of you may have read.. there was rationing during the war...back when people actually had to sacrifice some of their personal luxury for the benefit of a greater good...but I digress.

Wikipedia tells us "Tires were the first item to be rationed in January 1942 after supplies of natural rubber were interrupted. Soon afterward, passenger automobiles, typewriters, sugar, gasoline, bicycles, footwear, fuel oil, coffee, stoves, meat, lard, shortening and oils, cheese, butter, margarine, processed foods (canned, bottled, and frozen), dried fruits, canned milk, firewood and coal, jams, jellies, and fruit butter were rationed by November 1943."

And since necessity breeds ingenuity, the bakers, really, the women of that generation, found new ways to make their cakes..voila... the delicate deliciousness of this cake was born.

This recipe comes from America's Best Lost Recipes: 121 Heirloom Recipes Too Good to Forget in which I have found several great recipes, for obscure and once well-loved foods like Runsas, which are also called Bierock which my family loved.

World War II Chocolate Mayonnaise Cake (all italics are my own notes)
Ingredients
Cake
2 cups all-purpose flour
1/4 cup Dutch-processed cocoa powder
1 teaspoon baking powder
1 teaspoon baking soda
1 cup mayonnaise
1 cup granulated sugar
1 teaspoon vanilla extract
1 cup water



Frosting 
(I doubled the amount of butter, brown sugar and milk, and used 1 1/2 cups of powdered sugar to make my frosting, because we always like more frosting. I think if I had used the entire amount of powdered sugar it would have been too stiff.)
4 tablespoons unsalted butter
1/2 cup packed light brown sugar
2 tablespoons milk
1 cup confectioner's sugar


Directions
Adjust an oven rack to the middle position and heat the oven to 350 degrees F. Grease and flour a 9-inch square baking pan. (Because you make this in a 9x9 pan you can actually use your counter top (toaster) oven to make this cake, thus avoiding heating up the entire kitchen!)

Whisk the flour, cocoa, baking powder and baking soda in a medium bowl.

Stir the mayonnaise, granulated sugar, and vanilla together in a large bowl until smooth. Add the water and stir until combined. Whisk in the flour mixture until incorporated.

Scrape the batter into the prepared pan (you can actually let kids lick the spatula here without worry since the eggs in the mayonnaise have already been cooked! A great cake to make with little kids!) and bake until a toothpick inserted in the center comes out clean, 30 to 35 minutes. Cool completely in the pan, at least 45 minutes. (Many people leave this cake in the pan and frost it there. I flipped mine upside-down onto a serving platter before frosting it so it would look more birthday-ish and less Grandma VanZanten Poor-Man's Cake-ish..but let me tell you Grandma VanZanten's cake was AWESOME!)

*****
For the frosting, melt the butter in a small saucepan over medium-high heat. Stir in the brown sugar and bring to a boil. Boil until the mixture begins to thicken, about 2 minutes, then, off the heat, carefully stir in the milk.

Return to a boil, then remove from the heat to cool until just warm, about 30 minutes.

Stir in the confectioner's sugar and spread the icing evenly over the cake. The cake can be stored at room temperature for up to 3 days. (if it lasts that long!)

Enjoy!

12 October, 2010

Jump Start

earlier this morning...

Most of you would not be surprised to know that I have a lot to say. A LOT to say, but lately I think I have so much to say that I can’t get anything out, which is extremely frustrating because my mind is getting very full.

Well, apparently it just takes a little jump-start, because I am so upset right now I am shaking. And when I am this upset, I feel the need to write.

I was just in a store, and a little boy, not even three, walked right outside and onto the street. He opened the front door and walked out onto one of the busiest corners in our downtown. I caught what was happening just as I got to the register, and watched as the very sweet cashier, who is probably not older than 20, raced outside. I knew exactly what she was doing without even seeing what she was rushing after.  I guessed it was the little boy because I had already brought him back to his mother three times in the ten minutes I had been in the store.

Twice I turned him around and said "Go back to Momma.” while nudging him in the right direction, since I could see her from where I was. And the third time I actually took him by the hand and walked him back to her. She never looked up from what she was doing when I brought him back. Kids might wander a bit down the aisle you're on, but he was so sad and looking for her, "Momma, Maaaaaaamaaaaaa?", and so short he couldn't find her in the maze of boxes and displays.

When the cashier brought the little boy through the door I thanked her profusely. She smiled and I took the little boy by the hand and marched to the back of the store to his mother. She picked him up this time, but didn't say anything to me.

Life is hard. For a lot of people, life is very hard, so I am not going to judge the woman too harshly because Lord only knows what has happened thus far in her life, but based on her smooth appearance and lack of tear-stained cheeks, and her desire to look at Christmas ornaments, I am guessing not much tragedy had befallen her this morning. Her other child was at one of the display tables with a bag of candy from the store ripped open in front of her.

I told the mom that her son had gotten outside and that the young cashier had chased after him down the street. She just looked at him and said “Why did you go outside?” and that was it...I was so surprised by her lack of concern, that I started to think maybe I was making a bigger deal out of it than I should, so I just said, “I thought you’d want to know because he is strong enough now, to open up a heavy store door and get outside by himself. Maybe that’s a new skill?” She said nothing to me, so I turned around and walked back to the cashier.

I paid for my items and realized I was very upset. I was trying to figure out all of the emotion I was having. I thanked the cashier about 60 million more times... for paying attention, for doing more than her job, for making sure that woman didn’t have anything horrible happen to her today, for saving that boy’s life, because surely with the parking garage and the giant trucks, and the busy, busy light with a turn-right-on-the-green-arrow light, and the boy's lack of safety awareness, he would have been hurt in a matter of minutes. The young lady was so gracious, just saying that she didn’t think he should be out there on his own. She told me to have a good day, and gave me my bag. My hand was shaking.

I realized I was very angry. Sweaty palms, gonna lose it, shaking, sick to my stomach, angry.

Watching my son is a full-time job at home and in public. Spraining my wrist trying to keep ahold of his arm as I try to pay someone, wearing a backpack so I have more free hands, being fearful to go certain places because I’m not sure I will be able to keep track of him…resorting to his wheelchair because I am worried I will lose him….waiting years to take both of my children out together, waiting until Lucy was capable of following directions and walking without holding hands before I ventured to do things like lunch, or the grocery store, or the movies. Jake ripped my rotator cuff dropping to the ground when he was younger, and now we are working on walking nicely and holding hands...eventually walking next to me without holding hands. It is a goal at school. It's something we are trying very, very hard to master because it's very important that he stay with me, and we have the same expectation of our typical kid, because it's important that kids stay with their parents. Right?
and this lady just let her kid, her typical, able-to-talk, able-to-hear, knows-his-own name, walks-without-aide, child walk out of the store. He just walked out of the store, and it took someone bringing him back for her to notice he was missing.

I'm not one for saying "that's not fair." because no one promises us that life will be fair, or even, or equitable, or easy, but I found myself saying it anyway. 

It's not fair. It's not fair...I try so hard every single day not to be a burden to others, to make sure my children are not causing problems for any one else but me. Jake tries so hard to keep it together in stores. We leave restaurants when either kid is having a hard time, we leave stores and abandon carts when there is a meltdown. We do not lose our children in stores. Our family works hard every time we go out, the whole time, to do the right thing, and she, she just lets her kid all the way through an entire huge store and out the door....and doesn't even say thank you when he's found alive? 

**********
I am re-reading this 7 hours later, and I still have all those feelings, but another one has crept in...that feeling I get when I realize I am not being grateful. I wish sometimes my personality would allow for just appreciating that the child was safely returned to his mother, and not feel like I have a moral imperative to change the world and the way people think, or get them to think when they are obviously not thinking.


01 October, 2010

Ten, Ten, Ten


When my brother Gerard was little, and learning to count, he and my dad would slowly count together. One to five would be drawn out and slow, six and seven even-paced, but right about eight, and certainly after nine, they would make a sudden race for ten, and together they would nearly shout "Ten! Ten! Ten!"

and that is just how I am feeling as this day rolls around, and my first child, the boy who made me a mother is ten. Ten. Ten!

It's cliche to say it all goes by too fast, and in our case I don't think it's always true. Some days, even a year can fly by, but other moments are so weighted with importance, or joy, they seem to be almost outside of space and time.

He went on his first road trip when he was three weeks old, to go to my cousin's wedding. He slept on a wing chair, wrapped up like a little burrito.

He is getting tall these days, taller than his dad was at that age I think, and though he has puppy feet, nearly too big for his body, his movements are smoother as he gains more control, and more awareness of his limbs. 

He ate an entire papaya and chicken quesadilla at the Mai Tai bar in Oahu when he was only ten months old. Later that year, the chef came out to see the baby who was eating the wasabi mashed potatoes at the Four Seasons in San Francisco.


He has a great sense of humor, and a laugh that is infectious. My favorite is when he giggles so hard that he has to take a big breath. He stands still to let his little sister tickle him, and will come over to the couch for a family tickle match.

The first time he held his own cup and took a drink, we were at an Indian food restaurant and he was more than two years old. 

He moves so quickly it's hard to believe doctors thought he'd never walk, and he loves to test adults by pretending to meander before he breaks into a full run towards any exit that has been left open.

He took his first steps across our living room while he was yelling something at us. We couldn't understand him and he was so frustrated he got distracted and walked seven steps. 


He likes to be outdoors. I think he would be happiest on 40 acres; a place with a grove of shimmering trees, and a small brook with pebbles lining its banks. His love of nature inspired our AdventureVan purchase, and his love of the AdventureVan inspired our cross country journey this summer. He is a road-trip, roadside diner, let's-just-pull-over-here-for-the-night type of kid; his flexibility amazes me.

He went to sleep-away camp for the first time the summer he was five. As we drove away and watched as he ran off smiling and laughing down a leaf strewn hill forcing his counselor to chase him. 

He's showing an interest in technology, gently touching the screens at home on devices, and using the mouse at school to get through stories he likes on the computer. I love the sibling dynamic as he tries to grab the iPad or iPod from his sister and laughs as she shrieks to keep her hold.

He got into the car by himself last week, no physical prompts at all, and when we went home he went in through the gate without holding hands, and without running away.

He is affectionate, and more and more often he leans in to show his desire to be near you. His wordless gestures teach me that my body language, my movements, the spirit I carry through my home is often more influential than my words.

He got out of bed when I passed by his room tonight. He gently touched my arm before he turned and ran back to his bed. He buried himself in the pillows laughing.

******
Happy Birthday sweet boy.

20 September, 2010

I Feel Hopeful

When I was younger, it never occurred to me that my life would be anything but better the next day. As much as I was a pragmatic young adult, choosing to work instead of take that Europe trip, taking the solid job in front of me rather than risk for anything else, somehow I was still the optimist. I always thought that if a bad thing happened, I was supposed to learn from it and move on, and never experience that kind of pain or disappointment again, because I had already learned that lesson. I didn't think you had to live through bad things more than once.

I did not fully prepare for things like financial stress, career disappointment (mine or my spouse's), or losing best friends. My heart could not fathom the disability, or dead babies we have met along the way, which perhaps is better because I think some things are just too big and too sad to prepare for. It's better to be hopeful, and encounter pain, than to wait and anticipate hurt. My heart is a little bit achy today, and not because of any particular tragedy in my own life, but in the lives around me. So instead of mourning their losses, or taking on their worries, I was thinking this morning about smells, and sights and sounds that make me feel hopeful, like the world is still filled with promise and good fortune and possibility. 
  • stacks of lumber
  • cooking stores with rows of pots and pans and little tiny dishes for specific things
  • ribbon
  • dawn
  • finishing a book
  • new lipstick
  • the first rain on oil soaked streets, and the bright green of leaves that have just been washed for the first time all summer
  • getting off a plane and having the weather be completely different from the weather I left.
  • pens that work without shaking them or holding them at the correct angle
  • when my husband sends me a recipe he thinks we should try
  • IEPs that go well
  • singing in the shower
  • realizing that I am singing in the shower
  • watching my daughter sing, and make up her own songs
  • the smell of onions cooking on the stove in olive oil
  • shoe polish
  • painters tape
I need to take Lucy to school, but I think I may add to this list later

18 September, 2010

A Metaphor I'd Rather Live Without

*written Thursday night*

There is a mouse in my house.

a mouse.

in my house.

and you know what? I am SO GLAD THERE'S a MOUSE IN MY HOUSE,

because at least it's not a rat.

okay first of all, before you think I am a loon, there's really only one little mouse and it is very tiny of the field variety.

Here's the thing. I've heard that bugger trying to get into my kitchen for the last week.  We have an older house and an empty field, and apparently when they built this house they didn't really make it mouse-proof on the east side. Actually, we had a problem once before several years ago, and I sealed up all the holes, took fine mesh and stapled it across all mousie highways, but this one skinny little thing managed to get into the space under the kitchen cabinets and could not find its way out.

So I knew that that sound, whatever was behind that little wall, that creature couldn't get in to my house because it is sealed to make it into the kitchen. Over the course of the last week, each night, that sound got louder, and in my mind, the mouse grew bigger. It grew to be rat sized, it became a giant rat, then a terrifying oversized rat, and finally tonight, I was quite certain some miniature chupacabra was behind the cupboard, stalking my family, walking on the edge of the foundation, scratching the wall. The sound has haunted my sleep, made it hard to work, and occupied my mind nearly all day with me trying to figure out just what to do next to get rid of the giant beast behind the cupboard.

Well, that giant beast eeked its way somehow through the tiniest of openings, and just made a run for it down our hall and into the closet. There's a mouse in my house. a tiny little mouse.

Ha HA! It's just a little tiny mouse! Nothing to fear at all. Manageable! Quickly taken care of!
I set out two glue traps (go ahead, call PETA), and I have a broom next to me as I work, and tomorrow the mouse will be gone, and I will patch up any little holes in our defense system, and it will be taken care of.

and so.

and so that's it. There's no rat in the cupboards. There's no infestation or disaster, and it wasn't chupacabra, or a giant rat, it's a field mouse.

That's what I do to myself all the time...about everything. I build up a small, easily accomplished task, until it becomes so big that it occupies most of my active brain power, and I become immobilized  by the weight of what I need to do.

Then things pile up, physically, emotionally. The stack of mail, the unfinished writing, the clothes that the kids have outgrown, looming. And of course, there are all those things "on my list" I should do for my children, and for my husband, and maybe even for myself. They are little things mostly, which are reasonable, feasible, and within my range of abilities, like paying the car registration, and emptying Lucy's suitcase from her last little overnight, and taking the pile of shirts in my trunk to the dry cleaner.

If I could just tackle one, or three, things at a time I can take care of all those mice. And if there are too many, I should be able to ask for someone to help me without feeling like a complete loser. More importantly, I need to remember that a mouse can never turn into a rat (though there may indeed be a few rats that just start out that way.) I can manage nearly everything I encounter in our little life here, if I just address the situation, right when I should, in the moment.

ready?
answer that email | return the call | write the check | rsvp | clean it up | throw it out | donate it | repair it | tie it off | paint it| return it | bag it up | wipe it down | write it down | look it up | compare it | be grateful | reach out | stand up | lead | nail it to the wall | follow graciously | speak up | wrap it up | listen | put it away | ask | plan it | mend it | try it | polish it | fold it | put it away | make room for it | research it | read it | scrub it | make it fit | give it up | fluff it up | keep it up |

then rest

14 September, 2010

Acceptance

the kids four years ago August 2006
The Goodnight show is teaching the word "sibling" this evening.

myGirl: Oh! I can call my brother my sibling!

Daddy: Yep. You're very smart sweetheart.

'Nina' on television: Do you go to school with one of your siblings? That can be fun!

myGirl (to the television people): Nope. I do not go to the same school as my sibling.

myGirl (excitedly, to her dad): Hey, when I grow up and I have autism like Jake, we can go to the SAME SCHOOL!"

Daddy: Oh sweetheart, you aren't going to have autism when you're older.

myGirl (slightly deflated, then with building enthusiasm): Oh...well, that's okay. When I grow up, my girl will have autism, and SHE can go to the same school as Jake!"

Daddy: You mean your daughter?

myGirl: Yes, my daughter will have autism, and SHE can go to that school!

03 September, 2010

Grateful

  • In 'n Out Burger opened up in our town (mixed blessing!)
  • I was able to change out the DVR with no problems... a tele that cannot be paused is just not a part of my daughter's understanding of the world.
  • my children are so happy at school.
  • every phone call I've had in the last 24 hours has been from someone I am happy to hear from.
  • we are going camping this weekend.
  • the plane that crashed 300 yards from my husband in the lagoon near his office, crashed 300 yards away from him, not any closer.
  • my son really wants to play on the iPod touch. I think we may have a winner here.
  • both of my children are asleep, and so is my husband.. I've checked on each of them.
  • the campground my hubbins chose for this weekend is a 10/10 in the California camping book.
  • I have really interesting, smart friends. I can spend hours at a time talking with most any one of them, and still want more time sharing stories. 
  • After 4000 miles on the road, my husband and I can't wait to get in the car again with our kids and drive across the state for some quality outdoor time.
I have a great life, really I do. And, as I sit here with Mama Mia in the background.. I am also very grateful that my precious husband can sing so much better than Pierce Brosnan.  In fact, whenever Cris Daughtry comes on the radio, Lucy asks me to turn it up so she can hear "daddy."

02 September, 2010

It will be fall.. NOW

Jake is downstairs whooping and hollering, happily. Lucy is asleep in the guest room, having convinced herself that she sleeps better there. Descartes and I have taken up our places on our respective couches, laptops in laps, remote controls within reach. The beer is cold, the night is warm and we are safely snuggled back into our fall routines.

Even though the temperature hit nearly 100F in my backyard this afternoon it could not dissuade me from making home made sugar cookies and some royal icing so Lucy and her girlfriends could cut out shapes and decorate them as part of their afternoon play date. I put a ham in the oven. I contemplated the split pea soup I would make.

Jake's birthday is a month away, which means his IEP is in a couple of weeks. Which means sign ups for the amazing respite weekend camp he goes to must be soon. Then there will be Oktoberfest and Halloween, and Thanksgiving and Christmas, and while I will miss the music in the parks, a summer staple in our town, I am looking forward to back-to-school nights, and a new year of the Special Ed PTA, and the calm that will come after the weather cools and the rain comes.

I think I like fall the best. Perhaps it's because I still anticipate a new school year as if it were my own accomplishments that will transpire, and I have always been great at starting school years. It's a sort of rebirth, tabula rasa, the blank notebooks, the sharp pencils, and all those new school clothes. [here's where I would insert a picture of me wearing an Esprit color-block sweater made of scratchy wool with green corduroy pants...a photo from 7th grade when I used nearly all of my back-to-school clothing budget on one outfit because I loved it so very much. My father, a psychologist, let me experience this fully...coming home with only one beautiful esprit bag and a few basics, like socks, underwear and white tennis shoes. Later he felt badly for me and bought me a 3/4 length butter-yellow down coat to add to my wardrobe. It should be noted here that I grew up in Orange County, where the average temperature in the winter months is never lower than about 65. I was able to wear the sweater/cords outfit one time in sunny Orange County, but did wear the set in Germany in October. It never stopped itching me.]

The kids are happy in their classes. Jake's class is mostly the same, with a few minor staff changes. He fell in love with a new aide to the class, and when I met her the other day I could guess why, with her pleasant demeanor and beautiful smile. Every time I step on the campus at WunderSkool I get a little teary-eyed. The people there are so friendly and they genuinely seem to like their jobs, and their jobs are our kids. Every day I feel like Jake is cared for and learning.We are doing some new things with "talkers", and we tried out an iPad last week. He was very interested. Tonight he broke into his sister's room to sneak the iPod Touch from her, or at least see what she was playing. He seems to be more interactive in so many ways lately. He is less frustrated, maybe because he knows we're listening and we believe in him.

Lucy was so excited about going in to Room Two that she could barely contain herself on Monday. They call it pre-k, and while there's no algebra yet she does have homework sheets. We're learning together how and when we sit down for school work. When I started to get frustrated with her "I know Mom. I KNOW." attitude I took a deep breath, and remembered to be grateful for all of her words even if she was sassy. We'll get there, but she is hard on herself, and I had to talk to her about the difference between finishing first and being (or doing)  the best. First is always better in her book, and I can tell she rushes through everything. In the three days she's been there, she has already stopped scribbling everything in, and is paying attention to whether she's supposed to write a lower-case or an upper-case letter.

I am getting back into my groove too. I walked the Stanfurd dish walk the other day, which is probably no big whoop for most of y'all, but spending 1:50 minutes in a row without my children, focused on me and my health? That hasn't happened in a very long time. We also had a very productive meeting for The Thinking Person's Guide to Autism. I'm so excited that this project is going so well. We have really collected a great bunch of information from parents and professionals and adults with autism.

**********
post script: it is now 1:18 am. Lucy is next to me on the couch, unable to sleep. We are watching "Gulah Gullah Island". Not my favorite, but I figured she shouldn't be watching "Blindness."

23 August, 2010

Who's Your Teacher?

This morning I was talking with my friend Pollyanna. We've known each other since our first kids were babies. Jake was less than 6 months old and her daughter was nearly 2 months old. I had specifically chosen a playgroup of first time moms with babies who were younger than Jake. I knew already that something was different about my son, and the longer we could "look normal" while I figured out what was wrong, the better. Of course the playgroup was all girls, and they all passed him by in a matter of months, but by that time I had somehow managed to rope in a few women to be my friends, in spite of my different, but beautiful boy. While I don't see all of those women now, I know that in addition to Pollyanna, I could probably call at least two of them right now and they would help me if they could. It was, for the most part, a great group of people.

So, of course our first children are all the same age, and should be going into the same grades, etc. When I was talking with Pollyanna, I had to ask what grade her daughter was going into. Perhaps if I were a better friend, I would know these things, but mostly, I realized, I should know because my son should be going into the same grade, or it should be close, maybe he should be in the grade above hers. I should be at least as accurate as to be within 2 years...and I had no idea; just couldn't come up with it without asking, or starting to do some math, or counting all of Jake's teachers, which would just put me in a dark place because I am still not over kindergarten.

And while my conversation was such a nice welcome home after so many days away from my community, my tribe, after I hung up I was melancholy. A piece of my heart, in spite of being so full of joy it could burst, was sad. This has nothing to do with Pollyanna, or either of her beautiful, talented children... in fact I should celebrate the problem I have... I will never need to worry about what grade Jake is going into ever again; as long as he stays at WunderSkool, it will never matter. He may change classrooms, and certainly, at eighteen or so he will switch to the adult program, but as long as he is a part of that program, it just won't matter. All that matters there is his development, his needs, his growth, his happiness; the things that are important.

So why the frowny face jennyalice?

Markers, milestones, certification, progress checks... they are those bits of childhood that made our parents proud, or got us grounded. The little slips of paper in the mail from the state, "Your child is gifted." or "Your child meets the state standards for reading." There was the "N" for "needs improvement" I received erroneously in second grade, right before spring break, which made me lose my sh*t so badly that I cried all the way home on the bus (having looked at my report card even though you weren't supposed to look at it before your parents did...). That little "N" made me so upset that my dad, who was somehow home, and not at work, drove me back to school so he could speak with my teacher who thankfully was still there. Those report cards, checking the list on the wall the week before school started to see who your teacher would be, the anticipation of a new desk...shopping for school supplies and back-to-school fashionable clothing purchases... I don't really need to worry about any of that for Jake. None of it.

I buy clothes in the fall because he normally has grown so much over the summer it's a necessity. I clean out his backpack and lunch box, because they are filthy, but he's been using the same backpack and lunch box since I put him on that little yellow short bus 7 years ago. He will go to the same classroom, at the same school, for a very long time, and he can't even tell me if he has apprehension about the one new thing he'll have tomorrow... the bus driver.

I'm not grieving really. I'm not feeling all that left out. I just noticed. I noticed that we are different at our house, again. Even in the simplest ways, our house will continue to run differently than other houses with kids the same age. And while we will go through many of these little things with Jake's little sister, we aren't racing to Target today to get Jake a pencil case, and some wide-ruled paper.

14 August, 2010

This is My Country

I'm having such a great time on our trip. It's really amazing to me how diverse the land...and the people are in this great country. I may be liberal, but the conservatives can't steal my love of country or my ability to display the flag at my house, though you probably won't finding me with a flag lapel pin any time soon. I love this country, and my heart swells with pride when I think about how lucky I am to have been born here, and had the ability to have an education, and marry the person I wanted to marry. Knowing I can raise my children with clean water, and an abundance of food,  instilling our family's take on religion without persecution. And we can travel freely from place to place, without fear. It is truly a privilege to live here.

Visiting Washington, D.C., looking at all of the monuments to some of the greatest community builders the world has ever seen, makes me weepy. Our first President, George Washington, leading a group of disparate people in unity to help build our country. Abraham Lincoln, who held the country together, when slavery, and economics nearly shredded the fabric of the new nation beyond repair. Franklin Delano Roosevelt, seeing clearly that each person had value, and as a society we have a moral obligation to take care of each other, a concept that presses upon me as a parent of a special needs child who will always be on the receiving end of society's beneficence.

The amount of leadership and personal integrity those people must have displayed is astounding. I've already mentioned how moved I was by the John Adams series, and the personality traits it brought to light for us all these years later. I think anytime I see great leadership, or community building I am moved. BlogHer'10 gave me some great moments, especially watching Lisa Stone, an amazing community builder herself,  interview the the International Activist Blogger Scholarship recipients.

The speakers:
Dushiyanthini Kanagasabapathipillai, Sri Lanka, publisher of Humanity Ashore
Esra'a Al Shafei, Bahrain
, publisher at www.mideastyouth.com
Freshta Basij-Rasikh, Afghanistan, writer for the Afghan Women's Writing Project
Marie Trigona, Argentina, publisher of Latin American Activism
I was especially excited to hear Esr'a Al Shafei speak with such passion. I think my favorite quote was. "If you're going to piss a lot of people off you better do it very well." Which is exactly what the founding framers of this great nation did when they cleaved our future nation from the Crown.


myBoy at the FDR memorial in Washington, D.C.
It was an honor to hear those women speak, and a great feeling to be a part of BlogHer. I've met many wonderful women, who are now part of my community, my little world of Special Needs, and the advocacy and activism that come with it. 

And while I'm not saying that the International speakers are in the same exact same category as Washington, Lincoln and Roosevelt, in many ways they are. They are trying to make unheard voices heard, finding a way for their needs to be given credence. They are sewing up differences between religions and cultures, and encouraging a fresh perspective on old topics. And with their work, so important, and probably unappreciated for many years, they are reminding us to value the least of us, and to honor the best in us. 

****** 

I do hope you're following us along on our cross country adventure. http://www.haveautismwilltravel.blogspot.com

10 August, 2010

Family is Family

We've had a nice trip so far. I feel so lucky that the kids were able to see/meet so far, an aunt, an uncle, two cousins, three second cousins, and 5 cousins once removed. At last I think that's what they're called.
We are exiting the freeway RIGHT NOW to go see Niagara Falls.

Okay, right after I wrote that we got off a ramp and saw that the clearance was only 12 feet.
We are at 12 feet 6 inches...at least.
So here's what I know:
New York State troopers are very kind.
It takes 5 lollipops to get myGirl througha call to the NY state police.
My husband and I are GREAT together in a crisis.

More later.. gotta go look at those falls (we made it!)
More later.

06 August, 2010

Conferencing

So I'm at BlogHer '10 in New York this weekend...I left Descartes and the kids in D.C. Last I saw them we were all hot and sweaty and tired from walking all around the monuments on the mall. They dropped me at D.C.'s Union Station, and I had a nice air-conditioned train ride in to New York. This was followed by a very hot, sweaty walk to the hotel, because, while I did navigate the train to subway connection, and I got on the right train...I was not paying attention and got off on 42nd street (which made me start singing) until I remembered that the hotel is at 53rd. Wow. With luggage and a laptop bag, and a purse to carry, I'm fairly certain I lost nearly all the water in my body.

Though I'm in New York for the weekend, we've started our Big Adventure, officially, and I hope you'll follow along at www.HaveAutismWillTravel.com on Twitter we are http://twitter.com/autismtravels

I leave New York on Sunday, and will take the train to Pennsylvania, a state I've never visited, then Descartes and the kids AND the grandparents will pick me up and we will really be on the road.

Then we are off to several New York destinations, Niagara Falls, Chicago, Mt. Rushmore, The Badlands, Yellowstone...and then it gets a bit hazy for me, but Descartes knows where we're going.

28 July, 2010

Incompatibilities

  • My daughter and a full bottle of kiddie shampoo. Five minutes alone and she will empty that thing onto any surface she can find, swish her hands around and call it science.
  •  A migraine and taking care of three children. I just stole one of Jake's Maxalts because I got the little aura so badly I almost couldn't drive home from the car wash.
  • My kitchen counters and organization. No matter how diligently I sort the mail or put things away as they come into the house, our kitchen is a thoroughfare and a drop zone for things moving from one place to the next. 
  • My Internet connection and consistency I have had the spinning wheel of Mac death every time I click, despite rebooting. I can't even play Bejeweled because the connection keeps dropping...but only for 2-4 seconds at a time.
  • My body and sleep. Okay this is not entirely true. I love to sleep. Actually I love to nap, but the only time I feel like I can have any peace in my mind to work is after the children are asleep, and by then I am tired, and my brain doesn't work as quickly, so things take longer...and it is a bad cycle.
  • My son and clean hands. That boy loves to eat, and he loves to play in the dirt. Between the two I have yet to see a day when his hands did not require a reservoir-draining amount of water to get to a non-hazard state.
  • My dining room table and dining. Right now the dining room table is my desk and Cross Country adventure headquarters. Two chairs have boxes on them where we have been tossing items  we need to remember to pack, like headlamps and kid sunglasses and toothbrush covers.
  • My blog and consistent posting I think I can finally say I have too many things going on, and I am not nearly keeping up with some of the most pressing things. Descartes and I will launch our big adventure on www.haveautismwilltravel.com, well I suppose it's already there. So I do hope I will post more content before we leave, and that you'll follow along on our trip.

************

I wrote this list earlier in the day, in about 11 minutes, possibly less. This was the only time my daughter and her girlfriend were unsupervised. I heard them go downstairs to play dollies in Lucy's room. I was just going down to check on them when they re-appeared at the top of the stairs. 
They were naked, giggling and  
covered in toothpaste. 
bright blue, bubblegum scented (and flavored) toothpaste.

playdate over. 

mommy. all. done.

25 July, 2010

Whose Life is This Anyway?

He did not put any cake on me because he is a very nice man.
I'll admit, I thought being married would be easier.

In this day and age I thought that gender boundaries would have been quashed. I thought, that since I had clearly married the most romantic and kind man in the world that the sparks that flew in the beginning would be only the base for the fire of our life and that the sweet man I chose would never have a mean thing to say. I thought I would always, and in every way find him charming.

I knew we were better together than separate, and that once together we would be unstoppable in our careers, our travels and our desire to have adventure and novelty. Upon meeting us, I was certain I would continue to hear from new friends what an amazing couple we were.

And having found such an amazing guy from such a solid family,  it never occurred to me that parenting would be anything but joy and pride, with the brilliant little offspring we would create. Our children would be perfect, and well-mannered, and their successes would only bring Descartes and I closer and closer together. Our family would be a vision of success, and happiness. Our parents would be so proud.

yes, I DO have red hair in these photos
I thought I would always be a loving and caring wife, who thrilled at pleasing my spouse.  I thought I was perfectly suited to being married to this man, and when we smiled at each other throughout the entire ceremony I truly thought I would always be that happy. The optimism that surrounded us like a rosy bubble of delight could never be burst, and the people we added to our life would only be more successful and wonderful than we are.

 *******

Our life is so very different than I imagined, and yet we are so much better than those people I thought we would be. Our marriage is so much more real, and raw, and I love my husband so much more deeply than I ever thought I would.

And we are much better together than apart; Descartes and I know each other now. After 12 years we really do know each other, but thankfully we are still learning too; what it looks like to truly support someone in their life and career, how to care for each other when we are both in despair. What we have learned is that we travel well, and we're not scared of really anything when we are together.  Between the two of us, with his strength and my map reading skills, we can get out of almost anything, or into anything, like this cross-country adventure we are almost done planning.

We like each other too. Even when we don't get along, we are good roommates, except for the dishes, which apparently no one wants to do, and we continue to negotiate after 14 years of living together.  I genuinely like my husband, a lot. I think he's funny and smart, and handsome. And the way he builds things, and knows things is amazing to me. Just this morning, he 'hacked' a camera, breaking in somehow and changing lines of code so it would do what we want it to do-- the only obstacle he faced was our four year old daughter sitting on his head.

1998
I'm not as 'nice' as I used to be. I don't think I was ever nice actually. I think I've always had a dark sense of humor and a bit of a snarky streak, but I used to have more optimism. I used to track fewer things, so it was easier for me to remember what is actually important. And I'm sure I am not easy to live with because I demand that you read my mind and prioritize life in the exact same way I do.  I think I am more demanding, but perhaps that happens to many people as they age and know better what they want from life. Descartes is a patient man, tolerant of my drama, but he's figured out how to bust me out of my perseverations, and move our family on to better things.

2010
Parenting has done more to strengthen this marriage than just about anything else. Holding hands during a sonogram while we wait to see if Lucy was growing with all of her parts in the right places, holding each other in a parking lot when we got Jake's first batch of diagnosis from the first official place, helping each other through 52 days of Jake not sleeping, taking turns swinging him or driving, trying to not to yell at each other or our child. Many couples have a few months, maybe a year of disturbed sleep patterns, then they can look back and laugh. We have a life where hard things happen often, but we have learned not to wait to laugh; or at least we try. I think many big, sad things are behind us, and as much as I am rather pragmatic these days, I think I may be coming out of my pessimistic days. Descartes has just been waiting for me, patiently, ever the realist with the ability to take stock, reassess and move on.

I know that my life would be different had I chosen someone else to marry, if someone else had chosen me, but I am so glad Descartes and I chose each other, and that we have this life. I know it's not all perfect. But I think our parents are still proud of us, and I'm pretty sure Jake and Lucy will grow up to be decent human beings under our watch, so at least we know we've maintained one small piece of continuity in this world.

****
I love you my precious husband. 
Thank you so much for another year of life, this wonderful life with you. 
xoxo, 
me

p.s. please consider this your anniversary card. I was not able to get to the store.


23 July, 2010

That Rush

  • Singing Pat Benatar Love is a Battlefield in front of a crowded bar...or singing just about anything in front of a crowd.
  • Coasting in to the yard in Tahoe after a bike ride home from the beach.
  • Booking a dinner reservation for ten people in New York City to break bread with great people at BlogHer '10
  • Watching my son, who appears to be walking aimlessly on the periphery of the group, laugh just before the punchline of a story I'm telling about him, because he's heard me tell the story before, and knows what I am going to say next.
  • Looking at a map of our Great Cross Country adventure we are planning.
  • Discovering vegetables growing in bounty in our mildly neglected garden.
  • Hearing my daughter tell me I am "beautiful candy-sweetness", because I know how much that girl loves candy.
  • Making dinner for my family and friends, and watching everyone tear into my homemade cherry pie.
  • Just thinking about taking the train from Washington D.C. to Penn Station, by myself.
  • Dancing with my husband.

13 July, 2010

Resistance and Resilience

Four years ago we were sitting in a hospital room. That's Jake on the floor trying to feel the cool of the hospital floor, and that's Lucy, nursing, and that's me, tired, scared, and trying to smile, knowing that these were the baby photos Lucy would see someday.

Lucy was 4 weeks old and Jake had  Methicillin-resistant Staphylococcus aureus (MRSA).

The only isolation room they could find for us was at a hospital in a town 25 minutes away. We didn't know any of the doctors at this hospital, though the doctor who cared for Jake was in residency with our regular doctor. We had never been to this hospital before we checked in, and were immediately escorted to a room across from the nurses station. They placed us in a wing where pediatric patients who needed constant monitoring, but were not ICU, were housed. Because we were so contagious, and they assumed we all were carriers, we were not allowed out of our room except to leave the hospital directly, without stopping. We couldn't even get our own coffee from the room across the hall. We were not allowed in the cafeteria. People gowned and masked before they entered our room, speaking to us dressed as yellow papery ghosts, and I had a newborn. Jake had a wound that grew so fast, and had such a hard time going away that they drew a line around it in black permanent marker so we would know how we were progressing or not. Descartes slept on a tiny little fold out cushion chair for three, or was it four, nights in a row, while I drove back to our house each night with our tiny baby girl. It was horrible, and because of the wound placement, we were all fearful that it would get into his hip bone.

I have never been someone who is scared of people in the medical profession. I am not afraid of blood, or guts or gore. It takes a lot to make me queasy, and I always want to know why. My whole life I have wanted to know why, and figure out a way to fix things. I have tremendous respect for the medical profession, but I have figured out that I actually am as smart as some of those people, I just chose a different path, and this hubris served me well when Jake was covered in horrible wounds that would not heal. I was also so very lucky to have a doctor in the practice who knows us, outside of the office as well, and she knows I am not a sissy mom who brings my child in for the sniffles. When I took Jake to her that day, on only day three of the second round of heavy duty antibiotics, she trusted me when I told her it was getting worse, not better, and that the drugs were not working. I had been watching those red patches, counting them, and I knew. She trusted me, and she made the calls and found us a bed a 6pm on a Friday. Under normal circumstances she is a great doctor, in a crisis, she is an amazing doctor.. (and I will have to ask if I can link to her before I actually do. Can you please ask her if I can M.D.? I know you read this;) )

After we checked in, got Jake settled into some regulation jammies made of some crazy non-flammable material, a doctor came in to see us. She was kind, and greeted us with the proper amount of decorum and an air that let us know she was in charge, because of course she was in charge. Then she told me that Jake would need to have seriously heavy-duty, one-step-down from military grade antibiotics. Fine. Of course. And then she said he would need to have an I.V. for 40 minutes every two and a half hours.

Oh dear.

This post-partum mommy went nuts. I was holding Lucy, possibly nursing her, and I know I raised my voice. I'm sure of it... and I said something like,

"ARE YOU KIDDING ME? HAVE YOU EVER HAD A PATIENT WITH AUTISM IN YOUR HISTORY IN THE MEDICAL FIELD?"

and I continued...

"WE NEED TO KNOCK THIS KID OUT TO BRUSH HIS TEETH, AND YOU THINK YOU ARE GOING TO GET HIM TO SIT STILL WITH A NEEDLE IN HIS ARM FOR 45 MINUTES EVERY 2 1/2 HOURS?"

She looked a little bit, uhm, surprised, and hurt, and stunned, and miffed.

I said, "YOU ARE GOING TO NEED TO GET CREATIVE HERE. GO FIGURE IT OUT!"

and she walked out of the room.

My precious husband said, in the nicest way, and with only a little bit of fear that I might have a knife and be okay with using it... "Honey, that's the person who is going to be responsible for helping our son get better, perhaps you could go a little easier on her?"

A few, not many, but a few minutes passed, and the same doctor came back in...with a book in her hand, open to a page three quarters of the way in.

"What about a shot of the same drug every hour and half? A muscular injection. And we could put it closer to the site of the wound?"

And I clapped my hands for her and gave her every amount of praise I could muster. WHOO HOOO!

Of course I then had to convince the nurse, and the next doctor, when our first very smart, creative doctor had to leave, that we should only put the shots into one side of his body, the side with the big wounds. They said it would be too painful, and I while I understood that, I had thought this one through. I explained that my son only had one side he could still rest on, only one side that did not have a 2+ inch nasty, open wound, and if they took that away he would never sleep. The doctor rolled his eyes at me...literally rolled his eyes, and the nurse, he said, "Wow, I've never thought of that. So the patient can actually still rest comfortably, at least on one side."

I nursed my baby and rocked her to sleep.

It took 3 1/2 more days for the last wound to go down to a level that we could leave the hospital. We watched that last wound slowly shrink from its black outline, reminding me of an atoll on a map. When it looked like we were headed towards health, they let us go home, but his treatment was not over for another week or so. We drove him back to the doctor for a few days after that, twice a day, so he could get additional injections. I think he was on antibiotics for nearly three months by the time he was finally healed.

He has only a tiny scar on one hip, so small now most people would never notice it, but whenever I see it I remember how scary it was, how deeply infected my poor boy was.

*********

This part is bragging: We have never had the MRSA come back. This is pretty rare, because it is really hard to shake. We put a bit of bleach into Jake's bath for nearly two years. We still do not reuse towels (on the kids). We have hospital hand pumps with anti-bacterial at the back door, and in several other places around the house. We swabbed our noses with a special ointment for months. We use gloves for diaper changes. We hot, *hot* dry our sheets, blankets and towels.

01 July, 2010

Every Dog Has His Day

a girl and her dog
We are a lucky family. There's really no other way to see it, at least when it comes to dogs.

When I first met my husband he had two dogs, Buddy and Shadow. Buddy, a golden retriever was sweet and was a snuggler, always wanting to put his snout under your hand to encourage you to pet him. Shadow was a border collie, and a princess. She was in charge, and one of the smartest gals I have ever met.

I remember going to Descartes' boat, where he lived, and walking the dogs for him when he got stuck late at work. It was the most frightening thing to take those two beloved animals out to the field, and let them run without their leashes. It wasn't scary because they were in danger, it was a safe place where dogs were allowed off leash. No, it was scary because I knew that if anything had happened to those dogs, my relationship would be over. The dogs were in his life before I was, and I knew that if push came to shove, at least at the time, I was fairly certain they would win.

Buddy and Shadow were our first kids. We cared for them together in our new marriage. I cried when I dropped them off at the kennel for our three and a half week honeymoon. Their presence in our life dictated where we lived (not San Francisco, because in 1999 rents were sky high and no one had to take a couple with dogs, no matter what their income or credit report scores.) I think we actually live on the peninsula because of those dogs...we just kept heading south until we found a decent city that would let us rent with animals, and when it came time to by a home we started with the familiar, which was this neighboring city.

Buddy and Shadow were Jake's first dogs. They loved him, and never flinched as his hands clutched fur, his variable grasp not ever knowing how hard or softly to hold things. They made him laugh. When Buddy got liver cancer we were devastated. We went through several surgeries, each one getting us a few more weeks with him. He passed away at home on the cool of the tile in the hallway when Jake was one.

Shadow moved back on to the foot of the bed, and reigned supreme at our house. We fed her steak and rice with melted cheese. I pulled ticks off of that dog, and she loved my little boy.  Shadow lived until March 20, 2003. I remember the day because or entire house had fallen apart slowly; first a horrible stomach virus swept through, then we had a broken microwave, a broken rice cooker, and a broken computer, then the tub backed up into the sink, the sink drained into the wall, flooding our downstairs, war broke out in Iraq, and then the dog died.  She just closed her eyes, sighed and died in my arms at the vet's office.

Dog free, our house was cleaner, with uncomplicated travel plans, and it was quiet, and clearly we were missing something. It was difficult, but we decided to wait awhile to get any animals. Looking back, we had also decided to wait to get pregnant again. By this time it was increasingly obvious that Jack had significant disabilities. That fall he started early intervention preschool and rode the short bus for the first time. Our plans to have a second child were back-burnered for the foreseeable future while we figured out what kind of life we we were going to have. Jake had intense sleep issues, and some self-injurious behavior, and could barely walk independently, even at three. Our life felt a little bit out of control. Someone used the word "autism". We did genetic testing. We saw neurologists. We went to a million different agencies and doctors, and I started this blog.

Lucy adoring Bilbo (with family friend V.)
Somewhere in there we found out about NorCal Golden Retriever Rescue. We somehow, swiftly and happily became owners of Chandler and Bilbo. They came with the names okay? Chandler Bing and Bilbo Baggins. They had not been mistreated in their previous home, just neglected a bit in a "we have a newborn and a small dog, so we don't want anything big around our little tiny things" way.

Bilbo had a snaggle tooth, Chandler had a block head. They were both a beautiful red, and friendly to all they encountered, unless you were a raccoon or a deer or a black cat in the front yard. Bilbo was a love, patiently standing nearby lest you felt the need to scratch someone's head. Chandler was happy being a pillow, a wrestling bear or when unmonitored children were nearby, a step stool.

They were a great pair, brothers from different litters. They happily curled around each other in the back of our van and rode to Tahoe, or any other place, mostly they played with our children. They were Lucy's first dogs, and they loved her.

Bilbo died last summer, after several procedures to drain the fluid from around his heart. He was 9 years old. After the last big procedure we thought we would have some more time with him, but he passed away only five days later, choosing the same cool spot in the hallway that Buddy chose to spend his last hours.

So then there was Chandler. We thought about getting him a companion, but he was fine being solo. He was so easy going and friendly. He would sprawl across the living room floor, letting Lucy use him as a pillow as she watched TV. He was a joy to travel with, and loved playing in the snow when we went to the Sierra Nevadas. Big and fluffy, the ice would stick to the bottom of his coat when he shoved his nose into piles of fresh powder. He got along with other dogs, little children, puppies, old people, everyone except the black cat and the deer in the front yard, and as he aged he would simply put his head out the dog door to bark at them. He couldn't even be bothered to push his whole body outside to tell them to go away.

He got old fast. In a matter of weeks, he went from a little bit of a slow, chubby, dog to an old man who couldn't see to walk down the stairs at night because his cataracts were so bad. He stopped coming upstairs last week, then he stopped coming down the hall, then he just laid down in our room, at the foot of the bed.
Chandler 2000-2010 

He was a good dog. They were all good dogs. Friendly, loving, good to our children, and guests. We've been lucky, so very blessed by all the good natured doggies in our life. I keep trying to think of these furballs as 'animals' and they keep finding a way into my heart. I can't imagine our life without them

Lucy noted, "We can always get a new dog, but we will always miss Chandler." And we will. Thank you Chandler for being such a lovely, treasured part of our family.
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