Goodbye

My friend Lovey, her close friend passed away on today. It was good that "the girls" got to go up to The City to see her before she went. I wasn't able to go, (dealing with our own extended family issues), and it's probably okay that I didn't go because we were not close friends, but she is gone, and that is sad because I know I will not be finished by the time I am 38, and I am sure she had a lot left to do as well.

Jake Enjoying a Toy Store

In his own way...

The Kind of Note Home from the Teacher you WANT to see.

The note says "Jake did a great job today. He said, "No tocar" at speech and then he waited a minute and said HEAD! p.s. they were working on body parts.

Which means that Jake chose to speak the word instead of touch (tocar) the icon card.

that.....is.....so.....cool.

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.
  

Girls at the Park

Mali and Lucy at the little park near my house. These are the most rough and tumble little girlie girls I have ever watched shake a jungle gym. It was a pleasure to hang with them today.

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

Drawn Together

This is the piece of art Jake did with his buddy as part of an art program we put together in our school district.

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Lucy awake 1am at my Mom's House

girlfriend will not sleep.

My Dad's Student

Out of all the students we have seen over the years, at the mall, the museum, the zoo, BART, Safeway, you name it.. after teaching for 30+ years in the OC, clearly my dad has had a lot of students...this was, by far, the best "Hey Dr. B. I was in your class at FCC/UCI and I loved you class moment.

That is Chip, of Chip and Dale at the character breakfast at Goofy's Kitchen in the Disneyland Hotel.

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Hotter than DWC

Is there anything hotter than Deadwood City right now? It is 103 in my backyard. Jake is disturbed by the lack of outside play.. I am perhaps remembering that as a kid in OC we had days that were too hot and smoggy and were not allowed to play outside for fear of triggering school-wide asthma attacks.

I don't think it is even smoggy here, but I still worry about Jake, who would not necessarily know that he was getting overheated, playing outside to long. SO he is bored and tapping a plastic rake, and spinning a lid... and that makes him happy, so stimming will be okay while I pack Lucy's things for our trip.

Elevated beta-Alanine

Yeah. So that's what I've been Googling for the past hour. I don't even know what made me look at a 4 year old blood test with a spread of numbers indicating the various levels of amino acids for Jake... but I started looking, and then I really started looking because I remembered that he had elevated beta-Alamine.

So what? So nothing. Every few months or so I pick all of those "odd" things out of Jake's old medical records and Google them again. It happens sometimes that I will find an article at www.pubmed.com

This time I found another parent who has a boy who had a new autism dx and elevated beta-Alanine.

So now there's two of us Googling it, and probably only stumbling upon our own queries.

Anyone else ever had a kid with Cerebral Palsy ataxia, ADHD, panic disorder, sleep disturbances and Autism who had a blood screen that showed elevated beta-Alanine?

Go. You know you want to check that last "AMINO ACID, PLASMA" screen

Descartes' Birthday Present to Me

I forgot to post this earlier. My birthday is in February, but it took a long time to get framed.. so very kind of him, it's the cover of the book Can I Sit With You? Descartes is always good at thoughtful gifts... for Mother's day today he managed to find good candy corns (in May!) a kumquat tree (one of my favorite fruits), and we went together on a family adventure up and down the Peninsula searching for and eventually buying backyard patio furniture.

That's blood on Jake's face. He started bleeding while we were in Ikea. He wasn't upset, just sort of cracking up (which is, now that I think about it, a way that he deals with pain ugh.) We sort of made a hurry up decision and got out of the gigantor store instead of fighting our way back up to meatballs in the cafe which we had planned on (Lucy was singing a meatball song.. poor girl.)

Instead we drove the kids through McDonald's. Lucy and Jake were pleased to see chocolate shakes, and Jake apparently has entered a new level of eating.. he now eats like a man. A man. Crickey he ate a 5 piece chicken select meal with a bloody mouth. Lucy then proceeded to pour nearly an entire shake down the front/side of her. We heard a large "Uh Oh!" as we had started to drive away.
It's a little blurry, but here's the photo...

Regret

I haven't been posting much lately. Twitter has been fun (see right hand bar below) but in general I think I have been very down on myself about how I am helping Jake.. or rather not helping Jake become the little boy we think he can be.

I am constantly tortured by how annoyed I get. How I lose my patience. How I must hire someone to do tasks with him that make me sad and frustrate me and keep me from caring for the rest of my family. I watch other women with their kids, all the things they do to help their kids grow, and I feel a constant, ever constant feeling that I am not doing enough. That I am in fact not doing anything but waiting for time to pass. My feeling of regret for time lost, for therapies untried, looms over me until I can barely breathe, let alone write down what I am feeling.

I am so ashamed that even this outlet can't hold it all. I have the very best of friends and I can't even bring it up because I am so scared they will actually say out loud how disappointed in me they must be. I guess it's time for therapy.

or at least time for me to read Dear Abbey... who I variably read or don't read since I rarely get to a newspaper lately, but this morning I glanced at her Q&A and saw a line that I will keep in my back pocket "regret is the cancer of life".

Is there chemo available?

gonna make a poor man's pina colada with pineapple juice and malibu rum. yucky yum yum.

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.

Super Geek!

I just reformatted my computer. It's really not hard. Ijust popped in a disk after sorting through hundred and hundred of files.

In fact it was sort of like organizing a bunch of paper, setting half of them on fire then pulling out a new notebook.

My computer is no longer singing that high-pitched sad whine...perhaps I can rejoin the wired world.

We are back from Seattle and the show was fantastic! Sage was HIL-LARRY-US. I love to hear my husband laugh like that. More when am not so cranky because it was much too wonderful a weekend to spoil with computer drama.

We have a reading next week at Angelica's Bistro downtown, so make your reservations.

Wednesday May 7th 7:30pm
Angelica's Bistro
863 Main Street, Redwood City, CA 94063
Tel. 650.365.3226