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.