Such Stuff As Dreams are Made On

The building was huge, a true monstrosity whose architect was clearly influenced by the creepiest aspects of a poorly laid out mall, an abandoned naval yard, with just a whimsy of the dark garage of the neighbor you were never supposed to visit as a kid.

I'm not sure what happened first.  Did I know something wasn't right, or did they tell me they had "lost track" of my son? I just remember that the two women standing there behind the flimsy stanchion and rope "gate" looked both unsurprised, and only slightly worried, mostly about losing their jobs, and not about my lost son. My mostly nonverbal, does not come if beckoned, additionally taxed with cerebral palsy, and thus has poor fine motor skills, son. He is beautiful and funny and one of my true loves, but one thing he is not, is a boy who can be left alone.

anger.

It's hard to convince people to take it seriously. To lock the gates behind them, ensure the fence has no openings, make sure the dog door is closed. Hard for others to see that a deck with a low railing is really not safe enough, and if you add a chaise lounge next to the rail, so as to make it easier to rest your drink, you've just created a giant step to leap right over. It's hard to explain why just holding his hand in the parking lot does not guarantee safe passage, because he is strong now, and has moves like Houdini, able to twist his hyper mobile arms out of being held.

panic.

I'm sure that's what it feels like for him, that he is ever-captive, with no freedom to go about his day as he might choose. No matter how many engaging choices he makes, I can't leave the back gate open to let him explore, I can't sit in my chair on the sand as he walks along the shore. I have, or someone has, or someone should have, a hand on him almost all the time, any time we leave the confines of our house; he is ensnared.

So it's not surprising that he would have escaped under not-too-watchful eyes, and was now wandering in this poorly-lit labyrinth of a building.

fear.

I run down the corridor, but I know this is not where he would have gone. He's no fool, and would dart into a smaller walkway as soon as possible to avoid detection. I can see him across the abyss from one viewing station to another, four stories of art and science, and humans below us. I look to find the stairs on my side to head down to the level he's going to, but when I look back across, he has disappeared into a shadow again.

loss.

I'm alone in this. I can't get ahold of my husband, my daughter is too young for this responsibility, and yet I ran and left her with the very two people who lost my son. My daughter. I've just left her. I just turned and ran.

The phone in my hand is uselessly filling with voice mails that say, "if you can't handle it, let me know, and I can come help. If you can't handle it..."

shame.

It seems I am surrounded by an entire nation of people who do not get it, who walk by, either staring at my plight or avoiding me. No one who can, will help, and those who don't know how, are scared to ask. It's just me in this giant, horrible building where none of the signs make sense, and there are only open tread stairs between floors, and everything is echoey as I run, madly, searching for my son, hoping my daughter will somehow remain safe-enough until I return.

***

I woke with a clenched jaw and a headache painfully draining any good thoughts I might have had, and as the light seeped between the curtains, I begged the sun to tell me that it was just a dream.

And then I am clearly, fully awake, and I wander to the children's rooms to check on them, even though it is obvious we are not scattered through some other building.

I peek at my daughter lying on top of her covers, flat on her back. She looks like Snow White, with her hair framing her fair face, her ruby lips turned lightly at the corners; she sometimes smiles when she's sleeping, and that seems to make me think her life is pretty good.

My son is equally safe,  a tangle of teenager in his extra-long twin bed that is already looking too small for him. His leg is draped over the side, unwound from the covers, looking like a specimen of the perfection of man, with muscle and strength showing even through sleep.  His toes are set lightly upon the ground, like a sprinter sets their foot, ready to press off and beat the track down with perseverance.

I sigh at the wonder of them, and try to shake the chill of that unforgiving, other dimension.

I am ever-thankful that it was all a dream, but I realize, even hours later, with both of them safely at school, that I remain a little distanced from the present. I worry that some of that panic, and fear, and anger, some of that shame and threat of loss, I wonder if I carry a bit of those things around all the time, and that is a little unsettling. And I wonder how much of it is manufactured and how much of it is real? What is my business to figure out, and what are things I wish would change in the world around us?

Our every day has a lot of good in it. There's laughter and hard work, and good food, and adventures, and there's movie night and family snuggling. There are friends and family and celebration. So this night, when I sleep,  I will push away the dark and dreary, and envision instead our average day, our filled-with-so-many-good-things, average day, and when I close my eyes there will be my Snow White and my young, Strong-man, because the people they are, our little life- it's the stuff that dreams are made of.

Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.
Shakespeare The Tempest Act 4, scene 1, 148–158

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.

Busy Days of Summer

What a great week at the Lake house. Happy, tired kids and happy tired parents. Someone told me I looked rested today, someone else said I looked like I'd been "hiking or something." All I know is that I had a great time.

We had Sage and her family come up for a few days, and while I didn't manage to get a picture with all the kids together,  they got to do lots of things that they like. We went swimming at the beach, and went out on the boat and identified a rare bird for our neighborood. Jake got to chill on our hike, dribbling pine needles and rocks through his hands on the trail that used to be the train bed for the railroad that was built to supply the workers at Hetch- Hetchy.

 Kids and grownups scrambled all over boulders and only one foot of one adult, and one foot of one child got wet in the fun. Not bad. There were very few scuffles amongst the kids that were not resolved in under 5 seconds, and every single one was caused by Lucy being in someone's space. If ever there was a child who wanted a big sister it's Lucy. Thank goodness we have so many close family friends who will be able to step in to that role over the years.

Jake wore a hat. Woot! This is something we've been encouraging for the last two years, and it is really feeling like we can almost call it a success. With a history of melanoma in the family, it's especially important that we do what we can to protect the kids' skin. He lets me put sunblock on his face now too. Those ears get sun blocked every day, rain or shine!

Lucy got to drive around with the roof open on Daddy's Jeep. Even better when Descartes went back to the Bay area for a couple of days I got to drive around in the Jeep with the music and the sunshine and the bluetooth connection, and the awesome handling of the car, it is really hard not to smile the whole time you are driving that car... especially if you are driving it in to Yosemite because Oh My there is so much there right above your head.



I took the kids in to Yosemite by myself on Monday when Descartes went back to the city to work for a couple days. It was exhausting and awesome. Being responsible for little people all by yourself a long way from home with no local safety net is apparently something that gives me a bit of anxiety. It also made me feel powerful, strong and very cool. I'm sure driving with the wind in my hair and sun on my shoulders helped me get through. Did you know I am younger, more beautiful, and always recycle when I am in that car? Did I mention that we love the car?

Lucy asked me to take a picture of her where she is holding up the biggest rock ever. I think she got these crazy photo ideas from Mali and Iz. I will be studying how to get proper forced perspective shots so we can get them over with. By the time I take her to Pisa I want to be able to get that cool shot with her kicking over the Leaning Tower.

Lucy is loving being a little Junior Ranger. In fact, when asked to wear a hero costume to camp past Friday she chose her ranger outfit with hat and vest, because she thinks Park Rangers are like "heroes for the planet." This is one endeavor I do not mind indulging so that means a pin purchase and stamps from the ranger stations in our little passport book. It's been a learning experience for all of us, because as it turns out I did not know that garbage that you might find in the National Park that is over 50 years old should be treated as a historical items. So congratulations all you hippies who left your soda cans in the campground, they are now artifacts!

We explored an area new to us in the Yosemite Valley, the Happy Isles Nature Center. Most of it was very wheelchair friendly, and we were able to park about two miles closer with the disabled placard making the actual hiking part possible. We've been very good about asking Jake if he wants to walk or ride. I forget sometimes that his low tone means that he really will be tired and might not even be able to walk well towards the end of the day.

He and Lucy have both been pretty good sports given each of their limitations. She's only 6, and her little self gets tired out seemingly out of the blue. I think her blood sugar drops and she just plummets. She goes from greatest kid ever to, uhm, not the greatest kid ever. We can fix that most of the time with something from the bottomless snack bag that goes with us wherever we go.
There is so much to see and do, and there are all of those animals and birds to check out, I'm not sure that we will ever get tired of this beautiful place. It doesn't hurt that there is pretty decent pizza and if we stay too late, there's that awesome, inexpensive all-you-can-eat buffet in the evenings in Curry Village. We even discovered that the Pizza Deck has good beer (and commemorative glasses!) I'm not much for Hefewisen, but on a hot day at altitude it sort of hit the spot.
There was an Independence day barbecue, which included an airshow, and music, and many multi-generational families. The world is small, so of course the table next to us had a family that had retired to the Lake from my hometown, and the father had worked with special needs children in his first years of teaching. His daughter went to my rival high school. And there were many people who just stopped by to say hello to Jake. What was nice is that they all said hello to him before they said hello to me. Jake thought the tiny pony was pretty funny but chose not to pet him.

We did a lot of boating on the lake. This kind of cruising makes Jake very happy. He happily wore his life jacket and made me feel at ease enough to sip wine. Some days we took the boat out once in the morning and again for a wine and cheese cruise. It is such a luxury, and I cannot thank my husband enough for his ease on the water, parking the boat, picking us up on other docks. He makes it all look so easy. For the big celebration we entered the boat parade and while they don't give out a second prize, apparently we would have won it. It was supposed to be an historic event, so my darling husband bought hula-hoops and we went for the gold with Olympics 2012. That's the London Eye and Big Ben. We also had a cauldron and the Olympic torch. Little Lucy yelled "GO USA!" for about an hour. We had no colored paint for anything, so if you'd like to know how to make latex house paint go from beige to slightly not beige we don't really know the proportions, but it took coffee grounds, coffee, soy sauce, and a dash of Worcestershire. Pathetic, but very fun. Big Ben is very textured, and smells just plain odd.

Jake went back to summer school and has had positive reports filled with happy sounds and "cooing" as his teacher told me today. Lucy is settled into a new camp where she swims every day, so that little fish is happy and completely over tired by 4:30pm. I am trying to get back to work after weeks of sketchy Internet service. And Descartes and I are both trying to get back to a world where beer with lunch is not normal, and there is no ordering two-for-one pina coladas for me.

Tomorrow is music in the park which we all enjoy, and it just makes me feel all the more thankful because it seems every city in which I rest my head, is a pretty awesome place. Cheers!

Label Me Capable

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did  receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed",  I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.

*****

A version of this post was featured in the Life section of Salon.com

Fluffy Pancakes and Other Holiday Miracles

It's a new year. Shiny and bright and filled with promise, like a new school year, or a blank journal, or an empty center console in a family mini-van.

I am already ahead as this year starts. If I accomplish very little else I will feel like I have had success because...

I can make pancakes.

Now this might seem like an easily overcome obstacle for most adults who can read, have even limited physical coordination and access to the necessary ingredients for cooking. This simple task has eluded me for all of my 38 years, but I have now successfully made beautiful, fluffy, properly cooked-through and most importantly, edible, pancakes four out of the last five days (I didn't have a fail one day, I just wasn't in charge of brekkie). I can now make breakfast for the troops swiftly and easily. I fed four kids Sunday morning before 7:30am and it was a breeze. I have now mastered breakfast.

It's amazing how changing even the simplest things in life can make all the difference, to our confidence, or happiness.

On Christmas day we changed the time dinner was served. One hour earlier and Jake was able to enjoy the same, fancy, dressed-up, china, and three different wine glasses and four forks meal that everyone else had. He was able to stay the entire dinner, and finish three rounds of dessert before Descartes took him home. One hour earlier, and we had family dinner, with 14 people and Jake was able to be a part of the whole thing, and we all had a great time. Jake had a great time, because he loves being with his family.

Our holidays were lovely. Changing a few simple things made each visit with each family go smoothly, even successfully. In fact, I can't actually think of any major drama, aside from our "typical" daughter throwing a no-nap induced fit on Christmas Eve, but she's four, and it's been documented, and when she's a mommy we will pull out this photo, and remind her of all of her drama and cuteness.

The trip to Southern California for Christmas was one of the most successful we have had in years. We felt taken care of, accepted, welcomed and for the first time in a long time, I think we could have stayed a few more days. My family is filled with loving, kind people, really. I'm not even writing that just because they read this blog (Hi Mom!) They really are wonderful people, and we have had visits go okay before, but Jake is a different boy now. He's matured so much in the past two years, and it makes travel and visits much easier. He is calmer overall, and if he does get upset, he's able to calm down faster once his needs are met. And of course, we have grown up too. I worry less about what other people think, and more about how to take care of my family. I also focus more on my family, rather than my family of origin. It's hard not to fall back in to family systems when you go home, but I know that if I take care of Descartes, Jake and Lucy first, it will work out for everyone.

It really went so smoothly. My mother had everything ready to go at her house. We had the right milk, snacks and help each morning with breakfast. Our beds were all set up and the kid toys were available. And guess what my mom bought? A bin filled with smooth rocks and little army guys and small (plastic) sea creatures; Jake had his very own sensory box. It was easy for her to get done (with the help of my sister-in-law, Pinky) and the kindest gesture. Such a small thing that Jake loved, and shows just how hard every one is trying to make sure that we get to be a part of things.

Christmas eve we went to my brother's new house. It is in a very cute neighborhood, that reminds me a little bit of Toon Town at Disneyland, but it is a house filled with toys and non-breakable joy. Aside from Jake cracking off the manifold

in my brother's backyard, it was an easy, fun, family dinner.  The backyard was all set, and available for him to play in, for hours. We just moved one piece of furniture to block off some mud, and when it came time for Jake to turn in, he was able to sleep in his little cousin's pretty pink princess room, snuggled into all of those cozy rosy-hued pillows. Keeping doors closed, and breakables off the side of the table where our long-arm Larry walks through the kitchen, I didn't even have to make those requests because they know my kid now. Even the what-we-thought-was-major-but-turned-out-not-to-be-so-bad, plumbing issue was made to be no big deal, and certainly no one was angry with Jake.  We have a running joke in the family to guess who's going to ruin Christmas each year. One year my brother Gerard asked for the receipts to all of his gifts so he could return them and get what he "really wanted." Another year, my youngest brother Albert threw a little fit about how we "don't even know him" because we guessed the wrong size sweater for him, and I sort of tried to top that ruin by being upset that Descartes had not proposed to me (he proposed the next day). My sister fell into the Christmas tree one year, and missed another year entirely. So Jake tried to ruin Christmas this year, but we found the sprinkler shut-off so I'm not sure he can claim the title.

Christmas day with the other part of my family, has been troublesome for us in the past. The mix of Jake with china, glassware, and expectations led to many of us being sad. My parents have valiantly tried so many different ways to accomodate us, and this year was no exception. Their perseverance has paid off; this year it was fantastic. This was the dinner we moved one hour earlier. The other thing they did was to get a private room for our large party, which was perfect. This way the house was not "set-up" and breakable by Jake, and the mess of dinner was taken care of by a very nice waitstaff. The private room gave us some breathing space, and the patio we could access meant that we could take breaks between courses. The little kids got to wiggle and dance and we all laughed and enjoyed the very, very delicious food. It was such a luxury, and I am so grateful.

Our drive back to the SF Peninsula was easy. We left before anyone was too grumpy, packed food in the car, and were able to avoid drive-thru food for the duration. We stopped for dinner before we got home to avoid that horrible let-down of post vacation combined with an empty fridge. Then we washed some clothes and packed the car again and went to Tahoe for the week and New Year.

The gloves are 80's rocker-girl, but they are on!

What a fantastic week we had there! Beautiful snow, perfect accommodations, doting grandparents and little children who got along. I got to sneak out with the girls, and spend time chatting and sipping while gazing out at the icy lake, and later in the week, I went snowshoeing. The guys went ice fishing, and we all played in the snow.
Jake wore a hat and gloves. Jake wore gloves, and a hat! And he kept them on. Whooooooooo Hoooooooo! This is the first year he has ever kept them on. We cheered and laughed and he smiled, and all the little kids congratulated him! Perhaps it was the 20 degrees outside, or the fact that they've been working with hats at Wunderskool, or maybe Jake is growing up, and recognizes that he can tolerate some things for short periods of time. I know he heard us say that he would have to go back inside if he wouldn't wear gloves...and that boy loves to be outdoors. My sister got some great photos, and while he's not smiling in this one, he really did have a great time, which means we all got to have a good time.

We're back at home now, and I have almost finished unpacking. Jake had school on Monday, and Lucy goes back tomorrow. It's been a whirlwind couple of weeks filled with little things that have made all the difference: pancakes, room to breathe, gloves.

What a great way to start the year, grateful for these small things. I must remember that nothing in our life is static; there is room to grow and change, and even the smallest of changes can transform our family.

just in case you need a little bit of Happy Change, here's the recipe for those pancakes:

Favorite Mountain House Pancakes
sift together:
1 1/4 cups flour
2 tablespoons of table sugar
2 teaspoons of baking powder
1/4 tsp salt

add to:
1 egg, beaten with 2 tablespoons of vegetable oil and 1 cup of milk

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!

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.

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.

This Would Make A Great Reality Show

The premise: Without getting divorced, or running off the road, between June 3 - June 16, can you...

• Plan three birthday parties for an almost four year old? Remember to include the guest list, the menu planning and any communication surrounding these parties.
• Wash all the slipcovers and pillow covers from two couches?
• Research, then buy, then install a room air conditioner?
• Take apart the entire dishwasher, wash all of the pieces, make a repair and put it all back together and have it still run?
• Butt your nose into the planning of your 20th high school reunion, send out a survey, then breathe a sigh of relief when the other organizers use the data you collected and take back over the planning?
• Answer 40 emails about reunion any way?
• Go to Costco three times and Safeway six times?
• Break down all the cardboard that has been collecting at your house since January, get it in the car, drive it down the hill and leave it for pick up on the correct day/week of the month?
• Work 18 hours a week at a "real job" with deadlines 6 days a week?
• Cry over a dead router/modem?
• Research, install, reinstall, call tech support, give up on tech support, then reinstall successfully a new modem/router?
• Have your husband out of town for 6 out of 10 days?
• Take your kid to swimming lessons?
• Watch a sappy movie about a puppy with your nearly four old, because life is short and she will only be a kid this one time who wants to snuggle and watch sappy puppy movies?
• Attend a benefit for a really great therapeutic riding ranch?
• Launch an amazing new project "The Thinking Person's Guide to Autism"
• Take your special needs son to the dentist where he undergoes anesthesia and subsequently must be watched for 8 hours so he doesn't fall down on his face.
• Buy your birthday girl a new outfit for her birthday, lose it somewhere in the house and find it again in time for her party?
• Forget that your special needs son who had dental work last Thursday is up all night, each night for at least a week after anesthesia, and cries easily?
• Clean out your mini van?
• Pick up the dry cleaning and wash all the black socks you can find in time for your husband to pack for his business trip?
• Attend an end of the year party for room one at the preschool.
• Clean out the refrigerator?
• Prepare the house for five family members and their one elderly dog?
• Remember to send a Father's Day Card to one of your dads who is traveling out of the country?
• Put together any items you will need in August for a cross-country road trip on an RV?
• Pay the bills?
• Do all of the kids' paperwork for March, April and May?
• Clean out your closet?
• Drive to another city to pick up a prescription for your snk's narcotics, then drive to two pharmacies to get the prescription filled?
• Feel like a failure because you can only see one way your daughter is going to be able to take cupcakes to school, and that's if Safeway makes them?
• Order a sheet cake AND a Belle princess cake at Safeway while you're there, because if you are taking the easy way out you may as well make your life really easy?
• Sleep at least 4 hours each night?
• Drive without falling asleep each day?

AdventureVan

We had a big weekend after a sort of harried week, running around trying to prepare for this big weekend. We called banks, moved money around, photocopied and faxed papers and made a zillion phone calls. We oiled, smogged and waxed and wiped, then packed and drove to Tahoe, and everything went exactly as it should.

Our family loves a good adventure. We plan well, and try to account for most contingencies, but the story is always better when things go wrong, as long as those things do not interrupt sleep or safety. In an effort to thwart those particular types of problems, and with great hope that we will be able to have Jake and Lucy experience as much of this country (continent?) as we can help them experience, in spite, and a bit because of disability, Descartes researched, and we just bought this weekend...

AdventureVanthis really is a photo of our van with Lake Tahoe in the background.

Sorry that this "MonsterVan", as little Hawk called it, has only this small picture to post so far. I have yet to photograph the entire thing myself. This van will allow us to go camping with Jake and know that he will be safe at night, locked in tucked away and cozy. It has 4-wheel drive, so we can set up camp in locations that are more off the beaten path, which generally means farther away from other people and their cars. We can keep Jake safe in the woods, near bodies of water, cliffs and rocks, but it is nearly impossible to protect him from careless drivers in campgrounds, or the evil scowls from neighboring campers when he is hooting and hollering with happiness.

AdventureVan is gigantic, seats 12, has a pop up top to provide a sleeping area, and provides our family with the comfort of being able to carry everything we need.

Descartes spent a lot of time researching these types of vans. He actually told me he started to look when Jake was only 3 or 4, after he realized that our family's camping experience would probably need to look a bit different than what camping looked like when he was a child. The first thing we had to do was trade our beloved LandCruiser, but I know it was time to let it go (notice the mileage on the odometer over there). We took some great trips in that car, and it was the first major purchase Descartes and made together after we were married. I stepped outside the house just as the new owner of the Cruiser was starting the engine, and I was suprised to have my eyes well up. I know it's going to a good home, a Daddy and his two beautiful girls. We all ended-up with what we needed.

As soon as the papers were all signed and keys traded, we put in all of the car seats, noting how easily they all fit across the bench seats. We put Wolf, Hawk and Lucy across the back, Jake had his own row and Jaster and Demanda sat in the front bench. We enjoyed lunch at one of our favorite Mexican food places, Taqueria Jalisco, where the seating is easy and the customer service is kind and the food is delicious. Then we made Descartes drive us all around and all the way to Red Lake
Jaster and Descartes did a happy dance on the banks after they discovered that the lake is indeed frozen over, and already shows signs of ice fishing, with 3 or 4 holes drilled already. I smiled happily because the children were all asleep (except Jake of course). A happy, driving, napping van. Descartes guided our crew back to South Lake through a snowstorm.

Our first big trip will probably be to the Grand Canyon, but we will put the van to good use before then. I'm hoping for a grownups only trip to the wine country. It needs to be vacuumed and spit shined a bit, but it is so cool and the kids love it, and my husband is happy. The kind of happy that I haven't seen sustained in a while, and it looks good on him.

We made a good choice.

Victories

I'll take 'em however I can get 'em

Just went to the grocery store with both of my children. We are all still alive, and it was actually a "real" shopping trip...or at least we filled the cart. I was just telling Squid that while I'm quite certain I paid more than I normally would for some items, I am willing to pay more if it means that I got to take my special needs kid out on an errand that will be a part of his life forever and have it go better than okay. He was happy and jumpy and squealy and smiling. Lucy was begging for ham and bagels. I was able to keep hold of Jake's hand AND get Lucy her raisin bagel. I am calling that success.

I only got one "oh poor you" look, and it was from another mom with a kid in her cart that was "too old" to be there, playing with a small box. Perhaps her look was actually "oh poor you, I have one of those too."

We got help to the car from a young kid who thought Lucy was the most precious kid who ever landed on the planet. And she is precious, but mostly because she finally fell asleep in the car on the way home allowing me to unload the groceries and make dinner for both kids sans drama and "I NEEEEEEEED that Mommy."

Now I just need to get through dinner and bath time.

I can do it.

I can do anything if I can take those two kids to the grocery store.

Time flies...

when you are having as much fun as we've been having. We went to Tahoe last Wednesday night and I am so glad we left for the holiday weekend early. I had Jake's aide at the house keeping the kids busy while we packed the car, Descartes still worked a full day and it only took us 4 hours to get there so we still had an evening with grown ups once we got there.

We went to the beach on the third. Baldwin beach, where we baptized little Lucy (that seems like a hundred years ago...). It was so great to have Jake be happy, happy and comfortable in/near the water and in the sand (since sorting earth has been a recent favorite past time of his). He waded into the lake, smiled a lot and didn't steal any toys from small children (once we gave him his own shovel). Lucy was very excited, and I am proud to say that as much as she really likes her Sugar Plum Fairy ballet costume, she was even more eager to chase the minnows in the lakeside stream. "It tickles!" she exclaimed loudly enough for the minnow to swim away.

It is a personal goal of mine to raise a daughter who is just as comfortable in hiking boots as she is in high heels. I am also hoping she can easily tie a tippet to the leader, tie a bow tie and tie an apron. Somehow right? She can choose who she wants to be, but I want her to learn all the parts so she can know what she is and isn't choosing. Does that make sense? Anywhoo. I was thrilled then when the a couple of days later, Lucy stood there in a little dress calling for me to check out the biggest ant she'd ever seen. That's my girl. No Lucy leave the ant alone he doesn't need to be on your finger...

It was tiring at the beach, the sun, the altitude, ensuring that one of us was with each kid at all times. They can't really be managed by one person right now. Not with water and parking lots and other families. Descartes was able to give Jake some physical space and let him get about 3 yards away. I let him get to about 5 yards at one point. It's hard to give him the space and independence he so desires without putting us too far back should he need us, quickly as he sometimes does. We're trying, and I know he had a really good time. Of course we should have left 5 minutes earlier, which would have been just a few minutes after I said to Descartes, "We should go, it's probably about time for Jake to poop, and I don't want to deal with the swim diaper." Ah. If I could only listen sometimes...perhaps that will be a gift I receive in my 40s. That part of the day sucked with a capital SUCK, but I carry wipes and nitrile gloves and baggies and extra pull ups and clothes and a loving husband who is willing to grab any one of those things, or hold a struggling kid even when I use my highly-directive voice. It worked out just fine.

We went for a bike ride on the Fourth of July. It was pretty much a perfect day. We moved much faster than vehicular traffic that's for darn sure, and the kids had a giggly, napping sort of time. We rented trailers and bikes because we had been too tired to bring our own, but, as it turns out our bike trailer for Jake is actually a lot taller, longer and perfect for him. His head stuck out the rented trailer so he had no sun shade, and with a flick of his foot his toes could just reach Descartes' back tire. Let me tell you how (not) awesome it is to watch your hypotonic child throw his foot over the edge of the bike trailer, have his gigantor size 4 shoe get caught under the bar and have his ankle roll around until his foot popped back out. I was riding behind the boys, with Lucy in my trailer, and I was fairly certain that not only was I going to watch my son's foot fly off, but I was possibly going to run it over, thereby making my life truly a horror story. With fairly constant "reminders" Jake stayed inside the trailer doing wacky things like nearly lying on his back with his feet at the top,tapping his feet on the bar that attaches the trailer to the bike, and occasionally flipping his $60.00 shoes off. The good news is that the ice cream at Camp Rich was cheap. $2.50 for a huge HUGE kid's scoop, and that pretty made much made us forget that it was really scary. We will probably do it again.

Saturday we went to the South Lake Tahoe rec center park which is all gated-in HURRAH! I am so happy that people have figured out that parents feel safe when their kids can't run into the parking lot. It has a terrific play structure and swings and a volleyball court, and picnic tables. Lucy went on the big kid swing for the first time; all by herself with no back-up. I teared-up of course. She never really was a baby, but she is just catapulting past the milestones.

Jake spent a lot of time watching everything, sifting through the bark and sand. It is so hard sometimes to help him engage. I took him up on the play structure (something he does on his own at school)but he got panicky before I could help him on the slide. Perhaps he does have some depth perception issues? He did sit really happily cuddled against me on a park bench for a while. That was crazy. It is so uncommon for Jake to sit and cuddle that Jaster and Demanda stayed back, afraid to interrupt the mood. It made me feel very close to him at just the right moment. I have been missing him lately, all the while spending more time than I normally do with him. How is it possible for me to understand him so intimately, guess so many of his needs, and feel so distant from him.
note to self: I need to make a list of the things I know make Jake happy, things we can do together since it is all too easy to let him go off on his own, scattering pebbles and sifting the bark out of my flower beds.

We had such a nice weekend it was hard to leave, but managed to get it together and head home early Saturday evening. Once again we skipped most of the traffic. Lucy was so tired she whined a lot of the way. Jake just smirked in her direction.

Maybe...

Maybe I'm not managing my time well. It all seems to be slipping away from me. I have so much to do and not enough hours and at the end of the day? I still feel like I haven't accomplished much. My MIL, Cookie, told me once how she was constantly frustrated when her kids were little because when her husband would build a wall, or set up the sprinkler system, or some huge task, everyone (her self included) would cheer and praise his big accomplishment... and somehow, everything she seemed to do was undone within hours and needed to be done again, over and over again-- with no one cheering.

I'm sure I am not alone in my frustrations. Other SAH's or WAH's must feel this way sometimes right? Lucy is two and I have a child with special needs,but I still think I should be able to get a lot more done. But lately? Well, I am just too tired to tackle the big stuff. Probably depression? Normally when I get the blues I start to kick-ass. I was told years ago that this kicking-ass part is just another way that people cope. I am hoping that the kicking comes back soon, I have a LOT to get done.

In other news.. we had a terrific IEP the other day. Jake will be evaluated in all categories including ABA, which we have never previously pursued. I feel like he finally has the ability to physically sit still long enough to benefit from this kind of learning, and he has been doing discrete trial learning in the classroom set up by his teacher Janet. I think an outside set of eyes can help determine a good home/school plan that will help him keep moving onward and upward which he seems to be doing lately.

He went on the second grade field trip at school. The entire second grade went to a local children's discovery museum. I was actually a chaperon and had not just Jake, but TWO other boys in my group. Anna, Jake's regular aide was out sick, so Lala went with us. She was great with him, and it allowed me to actually have this small but "mixed" group. Of course one of the kids was George, Jake's buddy from the other classroom. He continues to be one of the nicest children I have even met. The other boy was Freddo, who I had never met before. He was shy at first and rode to the museum on the school bus..but he asked to ride home in my van with Jake. It could have had something to do with the little tv showing ShrekII, but I will take it how I can get it. Jake was such a good boy all day. I think he was thrilled to have his friends in the car with us, and I think I may try to take all three boys to Gilroy Gardens or some other fun over the summer.
I have always thought the the children at Jake's school were nice kids. Of course there are going to be a few bad eggs, but on the whole, well-mannered, well groomed, good spirited kids. I was thrilled to see all of "our" second graders behaving so well at the museum. I watched with dismay those kids from another school not sharing, blocking the stairs, pushing each other, running inside and generally not saying excuse me if they stepped on your toes. One of our kids asked so nicely to use a toy (that the other child had TWO of) and when that child said "no", our kid reiterated that he would only have it for a minute, and when the response was still no? Our kid said, well, okay, and pretended-on in his game without the toy, leaving the other kid standing there with lots of toys and no one to play with. I think I am going to write a letter to our school principle letting her know just how great our kids were, and how nice it was to see all of the school mission statements being played out in public.

To Do:
Lucy thank you cards for amazing birthday gifts from friends and family
Letter to Jake's principle
Call the Director of Special Ed and talk about scheduling evaluations
Pack Jake for camp (he leaves this Sunday)
Pack Lucy for Cookie and Papa's house (she leaves on Saturday)
Pack Jennyalice and Descartes for anniversary trip (leaves on Sunday)
Buy a new coffee pot

Hey--my dad is in town. He finished up his grades at the college, cleaned up his office and came up here this morning. He will be here until Saturday morning. I believe Lucy is calling him Grappa now. So she has Grandpa, Papa and Grappa, Grandma, Oma and Noni. Pretty lucky kid. I am just so excited that he is here. He is an easy house guest, happily reading on the couch, offering love to children passing by.

Tomorrow I will take my dad to coffee so he can meet Squid, Liz, Badger, Ep, Jo and the incomparable Barak.

[just so you know I had to take a break here because Lucy is doing some self-potty training and decided to drop her drawers in her room , but whne she couldn't find her little potty she bacame upset, and apparently, while I was happily sitting in the backyard on my laptop enjoying a cool breeze.. she crapped all over the place and was very distraught by the mess. So the Daddy hosed the girl and I crawled around and cleaned poop off of every surface where it was, and most surfaces where it wasn't as well. I also scrubbed out the cushion covers from the million dollar glider that is in the room, and her pajamas.. all covered in poo. Who knew that the NT kid would present me with more poo problems than the "special" kid?]

Lucy goes to her last day of daycare at Nanny Kidwell's house tomorrow. Nanny is moving on to preschool pastures and a matching 401k. Sux for us, but a smart move for her. It has been a great place for Lucy to grow and learn.. and get out of my hair! HA! We bought Nanny a pretty ring with a blue stone to thank her for her affection, determination, structure and warm heart. I am so glad we got to know her and her two wonderful daughters (who can still babysit!)

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

I need to make lists now. Lots of lists.

Maybe I am feeling a dose of ass-kickery coming on? Maybe?

I am always

...amazed by the kindness of others towards my special needs child:

• I know amazing women who helped make something wonderful happen.. an inclusive art project. We had the "art opening" at the Main Library here in Deadwood City. This is the art that was made possible by the grant applied for by DoubleTrouble and executed by Mamalicia, then turned into beautiful cards by Captain Blog. To order your set of cards visit our website and send an email to septarinfo@gmail.com
• the buddy Jake did his art project with came to the opening with his momma. He is the same boy who went on a date with us on Thursday. I must say again that he is one of the kindest little boys I have ever met. While he was at the library he made Jake a card that said "I had a great time at Johnny Rockets. I am having a great time at the library today too. I really like being your buddy." He drew pictures of a fish and several other creatures. He thanked me for inviting him to the art show. It was more than heart warming.

...surprised by death, even when we know it is coming, for all of us eventually:

• my girlfriend Pinks lost her momma this week after a very long battle with cancer. It was hard for me not to go be with her, even though it was not expected, and cost prohibitive, and would have been extremely hard on Descartes to juggle both children and work.
  
• I have an acquaintance, someone I met through close friends who has just entered the hospital for hospice. She is dying. She's only 38. I won't pretend that we are close friends, but I have laughed more than a few times with her, and care very much about Lovey who is her best friend. It will be so hard on Lovey and there is just not much we can do to make it easier for either of them. She is dying, and we knew it was going to come. We have known for awhile, but it is just so hard to imagine that the girl who danced on the bar with me, at Tao, in Vegas...is the same girl who is trying to get pain relief in her final days.
  
• I do not, at all, fear my own death. Not in any way, except to be pained that I will not be able to care for Jake, and who else will possibly care for him if I am not here. I am reminded that I need to get our ducks in a row to make sure that Jake and Lucy will be cared for in case I am surprised by my own demise.
  

...perplexed that I cannot make simple foods, but have mastered the most complex of recipes:

• I cannot make pancakes from a mix. I suck SUCK at making pancakes. I need to look up how to hard boil an egg, and I have failed at Jello every single time I have ever made it. Who fails at Jello?
• I can make an angel food cake from scratch, a soufflé which defies gravity and a chocolate cheesecake that was good enough to garner $200 at an auction.

...delighted when watching my husband plan an adventure:

• we are planning our ten-year anniversary mini-vacation, and have just, in our typical fashion decided that we should go while Jake is at camp at the end of June!
• we have decided to stay on the west coast of this continent and that is as far as we have gotten. Exceptions may be made for Jamaica, Banff, and Montana.
• we have recently excluded Panama due to the high incidence of armed robberies and kidnapping. We do not currently have time to be kidnapped.
• high on the list: Ten-ee-ah Lodge,
  
The Royal in Cancun (technically not on the Pacific Coast, I know.)

...disappointed that I cannot complete simple household projects:

• our downstairs bathroom has been "undone" for a year. It is only half drywalled and has the new toilet installed. We have also managed to place the shower stall floor pan. We have purchased the tile and the grout, and the glass for the shower but just can't seem to get it together to finish the damn thing.
• we have new lights, purchased in December, for the hallways up and down and Jake's bedroom which currently has the old overhead light with no glass in it. It broke last December which is why I bought the lights in the first place. I am hoping that eventually he will not have to stare at bare bulbs.
  

...thankful that this is my life, exactly as it is:

• i have the most precious children, the smartest husband and the coziest home. I am a lucky woman.
  

My Friend Betty

Betty died this morning. Of course I would have known that she was sick had I actually delivered the library books last week when I was supposed to, but my life got in the way and she fell ill and went to the hospital, so that when I went today (and towed along my best friend and her precious 2 1/2 year old to visit some "Grandmas") she was gone.

Talk about feeling like a heel for not delivering the library books on time.

I have been volunteering for the library since 2003. I think it's been that long. I deliver books, to a few others previously, but consistently for the past 5 years 5 YEARS! to Betty and her friend Marie at an "old-folks" home nearby. Marie is still alive and kicking. She told me not to cry. She reminded me that Betty was 91, and that she had a great life. and it's true, she did, but I will miss seeing her and hearing her stories and watching her take joy in my daughter and share concern for my son.

So here, for the record, lest I ever forget such a beautiful human are some things about Betty.

• Betty was a smart woman, clearly using every year of her life to gather more information and hone it for precision communication. She was quick in conversation and more recently when she began to forget some words, she wrote them down, so she wouldn't get frustrated. She just carried her list, adding words as she lost her ability to recall them without the aide. I told her that made her pretty smart. She told me it was a pretty annoying thing to not be able to remember the word "muffin".
  
• Betty was beautiful, and it was obvious, even at 91 that she had been an athlete, and not surprising at all that she didn't stop playing tennis until she was 82.
• She was an artist, painting large canvases with all of the joy that color brings; the blues of the coast and the flowers of the field. Though her canvases grew smaller over the years, her love of color grew bolder, and her hand more free. I enjoyed every painting of hers I ever saw.
  
• She loved my little girl, and was so, so pleased when I became pregnant with Lucy. She was so thrilled when she found out that Lucy was Lucy and not Lance or Lucas. And her eyes twinkled every single time I brought Lucy to see her.
• She marveled at my husband's role in our family, ever impressed that he both went to work every day to provide resource for our family and managed to change diapers and bathe children when he came home. She said quite often that I had clearly chosen an amazing mate. (It is nice to be externally reminded sometimes.)
• Betty had a great sense of humor, or at least one that I appreciated because she laughed at all my jokes, and was wry and dry right back to me.
• She hated being old, which comforts me knowing that she doesn't need to suffer through it anymore. She was never in poor health that I saw, not really, but she was bored with an active mind and a body that wouldn't jump and leap as it had in youth. Since she couldn't run about as she had, she read, sometimes 20 books in a month.
  
• Betty reminded me of my grandmother Lotte, a woman I miss every single day of my life. I felt so privileged, so lucky, to be able to have met a second woman who had so many qualities I admire.
  
• She was a good friend to Marie, and ostensibly a loving mother, who raised three very independent daughters.
  
• She was a good friend to me, always speaking frankly, openly, asking direct questions about Jake and always offering suggestions or encouragement.
• Betty loved hearing stories about Jake's successes, and she always, always, asked about this health and development if I did not offer the information.
• She loved beauty and color and music and filled her life, and even her small room with all of those things.

There are lots of things I will never know about Betty. She wasn't really my grandmother. I just borrowed her for a time. I somehow doubt her family will even contact me, although I left my information. I was just the library book delivery girl to their mother. They do not live near here, so they don't know that we visited once a month for nearly five years, that she knows so much about my life, that she encouraged me to have another child, even knowing that it was a scary, possibility that I would have another child with special needs. They don't know that she wept when she found out that Lucy was "just fine", and got weepy when Lucy said "Hi Betty."

They don't know that she gave my daughter a first birthday card and that we exchanged Christmas gifts. They probably don't know that Lucy and I made special trips to the flower shop for Thanksgiving, and Christmas, Valentine's, Easter and Mother's day, where Lucy picked out flowers or plants to give Ms Betty and Ms Marie.

It doesn't matter that they don't know those things, as long as Betty knew that we loved her, and I think she did. I hope she did.