It's Thursday and I'm in Love

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

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

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

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

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

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

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

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

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

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

He is a cornerstone.

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

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


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

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

You're my back bone.
You're my cornerstone.
You're my crutch when my legs stop moving.
You're my head start.
You're my rugged heart.

...

And long after you're gone, gone, gone.
I'll love you long after you're gone, gone, gone.  

Phillip Phillips - Gone Gone Gone -  Live NY PS 22

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.

On Our Anniversary

You were a little boy when I met you, I know that now. With your black hair and shiny hazel eyes, you were young, we were so young, but you had already been through so many things that I thought you were very mature and just had a little boy face. I thought I was all grown up with my speedy car and running my own store, and living on my own never having gone back home after college.

I'm glad that you came home after school or I never would have found you. I am so thankful that California felt like home to you so that you came back to your family. I fell in love with your family first, you know that. Your Mom and Dad and how they loved you and your sisters, and the obvious way that you were a family who fought for each other and supported each other even on grumpy or tough days. You were so respectful of your parents, and they trusted your judgement and your choices; it never seemed like you needed to prove anything to them.

It wasn't hard to fall in love with you, but I'm glad that we were friends first and that I told you all of the stories that I never would have told some boyfriend. You know every twist and bad turn I have taken in my life, and you never let go of my hand when I told you those stories. You have always been a good listener, and able to withhold judgement, or at least you appear to be able to do those things, and maybe that's just as important. You see what is good in someone even as they reveal their failings. You see an individual's best intentions, and give so much room for people to succeed.

I liked waking up this morning and once again finding you there on our bed with too many pillows. After all of these years, no one has ever slept on the couch, or left, or run away, and with all of the frustration we've been through, and some sadness, and worry, and strain, my mind always goes to the wonderful things we've seen and done together, and can only hazily remember the disagreements. Maybe that's how I want to remember things, but mostly I think that's how it is. We are on this path together, and any of those harder times just gave us a better sense of direction for our future.

I trust you. You have so much integrity that I know it has put you at a disadvantage sometimes, but I am so thankful that time has not taken that away from you. Cynical, pragmatic, we've been though those months, but it is with great anticipation that I watch our life unfold before us. Even as we have watched relationships around us sour, or dissolve, or break apart in rocky crumbles, there has always been something that we have... we like each other.

I like you, and your humor, and your clickety-fast mind, and your strong hands. I love you as my husband, and treasure you as a father to our children, who have your same twinkly eyes.

Thank you for another year together. I would choose you again, and again.

I choose you now. I love you. Happy anniversary sweet man.

Fit to Print

The book ... THE BOOK is now available. I am taking a break right now from building the Kindle version to mark this occasion on my own blog. We have received wonderful reviews so far, especially from Steve Silberman who has called Thinking Person's Guide to Autism the Book of the Year.
He says...

...my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person's Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.

(I hope you read the rest of his article...Leo's cuteness is featured quite prominently!)

This book has been an honor to be a part of, and I can only hope that there's a story, a chapter, or even one line that helps another person navigate this life a little easier. There was nothing like this book when Jack was diagnosed more than seven years ago. I didn't know which information to trust. I didn't even know any adults with diagnosed autism. The website, the online relationships and all of the great content just amazes me.

And I have learned and grown over the last year and a half. My mind has been changed, while I have also become more confident in my own story.  I have a better understanding of community, and I am learning what advocacy looks like, or should look like. My heart has softened, just as my resolve has become a bit more steely. My heart holds so many more people and all of their words.

I have always said I am a different woman, a better woman than I would have been for knowing my son. I know that I would have been a writer or an editor of something somewhere. I probably would have donated my time and skills to help others because I was raised to think that is important. But I recognize that I am only a part of this great project because of my son. All of his struggles and triumphs, and the future that lies before him in this great big world filled with malice and grace. He led me to this opportunity, and I hope he is proud of the work we have done.

Buy your copy today!

He Handed Me a Tomato.

I struggled to make the story more compelling to the parent of one of my daughter’s friends. He’s a kind man with two typical children, who asked me about Jake without any pity in his voice. (I hear that voice quite often, and it’s something I have come to understand, but still find hard to get over.) His was more of a genuine query about a child who isn’t often the “plus-one sibling” at the 5 year old birthday jumpy house affairs.

“I handed him a piece of tomato, and asked him not to drop it on the ground. I told him that if he did not want the tomato he could just hand it back to me.” I continued, feeling again that warm sensation of pride in my son, “He stopped, pivoted slightly and handed me the tomato, crossing mid-line, uh, going across his body, to give it back to me." The man smiled, and nodded his head, and looked like he really wanted to understand the significance of what I was saying.

And of course he couldn’t really understand why I stood there in the kitchen with a tomato in my hand, and tears in my eyes. Such a simple task, I’m surprised he had the patience for me to finish telling the story at all. But I know the importance, because for what I think is the first time in my son’s 10.5 year-old life, he followed a direction, in the moment, and made a physical connection with me, purposefully, and he had nothing to gain from his actions. We’ve come close, with a sippy-cup dropped into my hand, or rolled down the counter near me when he wanted more to drink, but this time he really put something into my palm, and he had to make a choice to do it… I wasn’t on the way, and there was no reward, no benefit at all. That unwanted tomato could just as easily have been dropped to the ground. He was even headed towards the back door to play outside, a preferred activity for just about any child, but he stopped and gave me back the piece of tomato, calmly and politely.

It is amazing how much joy we have watching him continue to learn and make progress in these seemingly benign ways; these subtle acts that he keeps adding to his repertoire. It leads us to believe that he is processing information in new ways, able to parse the language and make all the “holes line up.” And if he can hear and process and act on what he sees or hears, that means there is more possibility for him to be able to communicate his needs to us. And better communication means a more connected boy, and a life with less challenges. Like most parents, watching our children succeed is a fantastic double whammy; we get to see our children be happy, and we get to know that the hard work of raising children is paying off.

What I didn’t tell the daddy in the park were the next things that went through my mind. Because even as I stood there in the kitchen, the glow of pure joy, excitement and pride washing over me, pressing me to call every grandparent, those next thoughts went something like, “Oh my God, we are totally screwed.” After I exhaled the joy, I was filled with a paralyzing fear that we are never going to catch up, and there is so much more work to do. He handed me a stupid tomato, it’s not like he got the top score in his math class, or figured out a better way to extract rare earth elements. Jake’s home-aide squeezed me and let me know how cool it was to witness the new skill, and all I could wonder is if he would ever have enough self-help skills to be anything close to independent. Is he destined to rely on other people for every part of his life? I mourned that we have missed the window of opportunity. The plasticity disappearing in his brain, those neural pathways becoming fixed, fearing that moments like these will be farther and farther apart, and there are so many things he still cannot do. As a ten-year old boy I should not be cheering on the simple act of handing me a tomato. He should be skateboarding, and climbing trees in his friend’s back yard. He should be testing the boundaries, and reading Harry Potter or breaking his right arm as he barrel-asses down the slopes on his new snowboard. He should be playing too much Wii, and reading after I’ve told him to go to sleep. He should be asking for a raise in his allowance, and trying to convince his grandparents that the iPad2 is a perfect gift to give a graduating fifth grader.He should be doing so many more things at this age, and there I am pathetically sniffling over a piece of juicy red tomato.

Which leads naturally to the third emotions that rang clearly through my brain. First, pride and joy, then fear and sadness, and finally, guilt and shame. I immediately chided myself for comparing my son to some sort of norm; he is incomparable in most respects, to most other children in both deficit and strength. He shouldn’t be doing anything more or less than what he’s doing, and the fact that I let all of those things run through my head meant that I was not present for the child that was standing in my kitchen. My son is not any other child than the one before me, and how he learns and grows and interacts with the world is going to be different than every other child on the planet, autism or not. It’s shameful to dwell on what I thought parenting would be like, what my home would look like, how my children would act, and what they would do to pass the time, and I thought we had long since stopped comparing him to other children his age; it doesn’t do anyone any good to compare. I do not to indulge in the rat hole of "why me?" and try not to get side-tracked by the accompanying envy of lives that look easier, simpler, or more carefree. When we keep longing for a life that didn’t happen, or that won’t happen, we lose all those moments of the life we actually have. And I have a great life.

I tried my best to move my mind back to joy as Jake ran out the back door and I put the tomato in a shallow bowl for him.

While I sometimes can’t help noting the typical-kid milestones we miss, I am, for the most part, less troubled than I used to be. These days I am more focused on how I can help Jake become the happiest, healthiest child he can be, in the most supportive environment. How can we engage him in the activities we have determined make up the core of our family's value system? How can we make him feel safe and heard when he doesn't have a "voice" as others have. And I’m trying to strike the balance between having expectations for my son, and being unrealistic.

So maybe it’s not an amazing story for anyone else, but I know this is part of the joy in my life; I get to witness these small victories. I get to help Jake learn and watch him gain the kind of skills that most people never even notice. I get to be thankful for things like pincer grasp. And I know I will never take for granted his health, his ability to walk, his sneaky smile, or the one time he handed me a tomato.

****

This post was an editor's pick today at OpenSalon.com

A Very Belated Thank You

I am a very grateful person. Every morning, every evening, and many, many times throughout the day I am thankful for my friends and family. When I unlock my door, not only am I thankful that my key works, but that I have a door to open.

When I am standing in the midst of the debris and various body fluids that seem to accompany parenting, and the additional food on the floor that is brought on by a child with disabilities, I am thankful that my children are healthy, and with me. I am so grateful when my husband, who has somehow managed to put up with me for more than 15 years, walks through that door again, and helps me get our life cleaned up, and set up for our next adventure. I say, many, many, times a day to myself: I have a great life--and I actually mean it.

I try to tell the people in my life that I love them, that I need them, and when I find their jokes funny. I almost always write a thank you note.. oh yes... I really do. I write them.

and then they sit.. in a box, or in a pile of unstamped mail, in between the seats of my car. They get lost in the shuffle of my life. They used to get to the people I want to thank. I even used to send cards to people randomly just to let them know that I care.

So, for all of you who are waiting on that thank you card.. for my dearest friends who do too much, and for the gracious hostesses who have served me well, and those that have gifted my children all of the amazing things we have around our house... I'm working on it.

If you get a note in the mail, or on your porch, or in your child's little cubby, and it's dated 2010, or even 2009, please know that I've been thankful for you that whole time. All of those days between you adding joy or brightness to my day, or saving my ass, I am so grateful for you, and for you, and you, and especially you.

I hope you know that.

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!

The Nicest Thing My Parents Could Write to Me...

an email I just received upon our return from Southern California:

Dear Jennyalice

PJ & I think you are doing a wonderful job of raising Lucy. She is a very delightful and charming little girl.
We really enjoyed having her here(You too)!
love,
Momma and PJ

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

as Lucy is fond of saying "Phew. That was a close one Mom."

Change

Anna, Jake's loving, kind, tender, demanding, experienced aide..is no longer going to be his aide at school.

She can't physically care for him and take care of her body. When she asked about the future, changing her position in the class, being his aide half day etc, on Friday, she had no idea that it would mean that Monday morning she would be somewhere else.

I sobbed on the side of the road after I dropped Jake off at school today. His classroom teacher Janet had tears in her eyes when she told me. She didn't know until this morning either when Anna called, also in tears. It was the right thing for the district to move her. She will be with pre-school kids now; little ones who are a third of Jake's body weight. She will help little 3 and 4 year olds with disabilities and sad mommies, and those people will be so lucky to have her there. She is a good egg. She is good to the core.

and we will be okay. I can say that now, 12 hours later without having the tears in my eyes slip out onto my cheek. Okay I guess not. I am crying again.

It goes like this right? I mean change is the only thing that's constant. It will be a growth experience for all of us. We will find someone else who will care for Jake, and fit into the classroom, and not be bitter that my nearly 8 year old still isn't toilet trained. He or she will help him eat, and encourage him and know soon enough what his favorite book is and remember first to offer him water when he is upset.

I had to explain my tears to Lucy who sat patiently in the back seat eating vanilla wafers while I pulled to the curb and cried in my hands that no I was not mad at her. I said I was sad, and she asked me why.

I didn't tell her the whole truth. I left out the part about how people are unkind, and impatient, and most won't bother to learn all of Jake's subtle cues about when he needs to eat and pee and rest and run. Didn't tell her that while aides get paid a bit more for a kid in pull ups they will begrudge every minute they are in the bathroom with your kid...or worse yet leave your kid in soiled pants and let them get on the bus because they won't be there on the other end of the ride when Jake is miserable and yelling and has kicked off his shoes because he is so upset and embarrassed. I didn't tell her that the difference between a good aide and a bad one will make our home life easy or hard every single day. I left out that an aide without intuition may as well not be there, and that if her brother isn't pushed and held to standards he won't learn and grow and we will lose even more time. I couldn't bare the thought of explaining that most people will just think her brother is severely mentally retarded and never even notice that he laughs at jokes and smirks when he has gotten away with something. I didn't tell her that I was crying because her brother's life is hard on an easy day and finding someone he can spend all those hours with and feel safe and happy will be just one more thing that makes it hard for mommy to relax while he is in school.


I told her I was sad because one of Jake's teachers had to get a different job, and that Jake was really going to miss her. She asked if it was Anna. and when I told her it was, Lucy said "me too."

We will all miss her.

I picked Jake up from school so he could have some time with Anna who had to come back to his school to drop off her keys. They hugged and we all cried and Jake kept hugging her and loving on her. We gave her a pretty ring as a goodbye present, and I made sure she has all of our information. Her new school is actually only three blocks from our house, so maybe we will get to see her sometimes, but we know how it goes in this life.

I am trying to just sit in the space of thanks. I am so thankful that we had a chance to have her as such an important part of Jake's life. He is a better kid for having her as an aide, and I was so thankful for being able to relax when he was in her care.

and now I am going to drink a beer.

Calm

Lucy is eating her fourth piece of toast smothered in butter and home made jam. Jake is in the back yard sifting rocks, creating his own Zen garden in the corner.

The migraines have finally passed. This time. We made it through another round.

I try to remember how I felt just a few days ago. I think it's like living while drowning, if that's at all possible. Although I've never been even close to drowning in actuality, I can imagine that our life with Jake's migraines (which exaggerate his other disabilities), our life might be like when you have fallen in and you are just about to swallow that first breath of water, but you can still see the surface. I feel like I'm not going to make it, as if I have run out of patience and compassion and energy and will.

and then I catch a breath. Descartes comes home from work, Jake slips into a tenuous calm, the babysitter shows up, and I can come up for just a moment.

Enjoying Life

really... I am so very thankful this evening for my family and my friends, for our continued prosperity, for our rich, wonderul, amazing life.

My sistow is here, with hubbins and the boys. Our kids had so much fun playing today. We put up the little pool in the backyard and they splashed about...Lucy poured a bucket of the chilly water over me while I dozed in the sun. After "all of those children" went to bed we adults polished off a tankard of sangria. We haven't seen each other since the end of March, so it was nice to talk..all four of us. I love how Descartes lights up when he's telling a story to Jaster and Demanda.

They like our new car... which is just like the one pictured here (except ours has blue interior). My husband is crazy.

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.
  

Good. Kind. Kid.

I did it. I took Jake out with his buddy from school yesterday.
That little boy was so wonderful. Polite and the kind of kid we only
hope ours act like when apart from us.
He was a joy. Jake was so happy.
It wasn't as hard as I thought it would be. I mean it was later..but that's another story.

__________________________

Okay the other story I can tell now that I am not trying to type from my phone...it was hard because LATER.. I got to thinking about how Jake's friend and I talked about all sorts of things he likes to do, and who he plays with, and when I dropped him off he was able to tell me where he lived, and who his neighbors are. He could read the menu. He ordered his own lunch. He asked if he could use the bathroom. He made a joke about something. Basically he was a "typical" kid (although he is actually more than typical, he is truly exceptional with his compassion and awareness of others and their feelings and needs.)

I got to thinking about the fact that Jake isn't like that. Now we have plenty of friends who have kids the same age who have sailed on by Jake with their abilities, but we have known those people forever, so it is sometimes painful when comparison is impossible to squelch, but generally that just stopped happening years ago. But here was a kid who is in the class next door to my kid. I am not often derailed with this emotion anymore. I know it will happen again and again as "typical" milestones come and go, but most of the time I prepare myself for them.

Last night I just had to swallow that little sadness and be so, so thankful that Jake's friend's parents have raised such a good kid. Thankful that Jake sends some sort of vibe out into the world that draws at least a few kids near him, (even a little girlfriend for awhile!) I praised Jake in the car after his friend left, letting him know that it speaks to his character that other kids like him even though he doesn't talk very much. I told him that some of his friends probably appreciate that he is a very good listener.

I swallowed that little pain (with a little cocktail I'll admit) knowing that I never would have met this delightful boy if Jake wasn't the child he is, and I probably never would have appreciated the wonder of watching a child read his own menu, buckling his own seat belt and thanking me for lunch. I am a better person with Jake in my life. I know I am. So I am choosing to be just ever so thankful to Jake's friend for being nice to my kid, for coming with us to lunch, and for wanting to do it again sometime...also for asking if Jake would like to play basketball at his house sometime.. .because Jake's friend? He volunteered to help Jake play.


Can I Sit With You?
buy it now at http://www.lulu.com/content/1466612

www.CanISitWithYou.org

Is It Friday? Well it Must be Since Jake's Talking!

I just got a call from Janice, Jake's amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: "Jake look, there's the circle. There's the square. There's the triangle."
Jake: "Triángulo"

for those of you who do not speak Spanish, that's triangle. What's even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish...so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna's ice cream too.

Anna: "Jake, your ice cream is all gone."
Jake: "NO."

Janice: "Jake, would you like some of my ice cream?"
Jake: beginning calmly and ending with high-pitched happiness, "yeAH!"

a few minutes later...
Anna: "Jake, you should say 'Thank you' to Ms. Janice for giving you some of her ice cream."
Jake: beginning slightly muffled then ending clearly..."Thank YOU!



parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Without Really Saying Anything

I had an experience today which made me realize (again!) how much I love my husband... the one who does dishes only when asked, doesn't ever wake up when a baby cries, and needs to be reminded to get a haircut...that husband.

I love him because he knows, that even though his first instinct is to mind his own business and stay out of other families' messes, he knows the right thing to do and always, always steps up to the plate to lend a hand to someone in trouble. He puts flares down. He paints before the landlord comes. He moves your stuff, or someone else's at the last minute. He waits until you are safely inside with the door locked. And he shows up with the flares, the paint, the truck or a flashlight.

I love him because, even when it seems like he has no idea what really matters to me, he does. He knows what is important to me and my heart and without complaint or hesitation, jumps in, or out, whichever is necessary.

and i love him because my only real complaints about him are really, for the most part, the most superficial of things.

tonight I am happy to do the dishes.

Thankful, In No particular Order

• Can I Sit With You? already has a beautiful review...from someone we don't even know.
• Everyone I know and love is safe and where they should be.
• All of my parents are alive and I got to speak with each of them today.
  
• My daughter figured out how to use a cookie cutter in 18 seconds flat.
• My son, even though he stayed awake until 3:30 am last night.. was so precious and even held my hand after he crawled into bed next to me.
• We had plenty to eat on our table today.. and yesterday too, and probably tomorrow and for the foreseeable future.
  
• I have a lot of family....they all love us, and our crazy kids, and they all want us to be with them on Thanksgiving.
• I have a husband who loves his mom and dad.
• My not-so-mini-van has a television in it. and seat warmers.
• The sunset from the deck of my in-law's home is unbeatable. Three bridges, San Francisco skyline, campanile, Alcatraz and the Golden Gate
• My sister and brother-in-law are flexible and love us even though we bailed on them for Turkey day.
• Sage and family take care of our dogs just about every single time we leave town (which seems to be often).
  
• Elections are coming so we can have some change and a feeling of hope in the country.
• I have amazing friends.
• I have just finished a bottle of champagne.