Things I never thought I'd say or do as a parent

"Stop reading and put on your shoes."
"Don't use the dark force on your brother." (while playing Lego Star Wars)
"Stop drinking vinegar."
"No thanks, I don't like strawberries, lettuce and vinaigrette dressing."
Check labels for the highest fat content. (My son's is being weaned off a feeding tube.)

What's your list?

Crossposted to Silicon Valley Moms Blog

1234567890 seconds old

Yesterday my husband threw me a surprise birthday party to celebrate my being 1234567890 seconds old.

I loved the idea as a total nerd and because my regular birthday always falls right around Thanksgiving.

All my life I've wanted a surprise party. My husband finally pulled one off.

So far this seems to be a year of my dreams coming true, but all was not sunshine quite literally.

We drove through a terrible storm to get the kind friends who hosted my party.
And my parents' power had been out for the last 48 hours and so had all her friends, so my sister-in-law and sister baked my cake at the last minute.

My dad said that they got home to a cold dark house, and then a minute later the house lit up again like magic.

The whole thing was a great symbol of my life so far.

We hold it within ourselves to be good family

My package for my parents has spent Christmas eve sitting in the UPS warehouse about 40 miles from our house, so alas not in time for Christmas. I ordered in on Dec 18, so UPS does not get my Christmas cheer this year. But it does mean we will visit them again once the package arrives, so I guess it is good cheer for my parents.

We did avert one Christmas crisis by buying the last two Christmas puddings at Andronico's. Otherwise my mom would make it herself which takes at least 7 hours. I kid you not.

But the kids are really excited this year mostly about spending time with extended family and that's what Christmas is about for me. A friend who's had a particularly hard year this year blogged "We hold it within ourselves to be good family." And that's what I strive for.

Personally I don't care if we have Christmas pudding or not, but it matters a lot to my dad. So after a lunch with my brother's in-laws, we drove to Andronico's. My son was already fast asleep and my daughter who normally loves shopping refused to leave the car. I thought about whether to spend the wrist points to get out of the car and carry those puddings. My husband offered to do it. I briefly wished my service dog was already here. But I decided that getting the right pudding was worth it and my husband doesn't know about Christmas pudding. So off I went. I returned and discovered they had overcharged us. My husband just said he'd go back. He understood the cost to me to go back again.

My mom only vaguely understands my daily pain and my dad not all. My service dog may teach them. I have no idea. But I've decided it doesn't matter. My children don't understand the costs of the things I do except in vague terms. Sometimes we talk about wrist points. And I don't really want them to. I try to be good family.

Here Comes Another Bubble popped (sorta)

I'm annoyed that one of the funniest Youtube videos to come out in a long time "Here Comes Another Bubble" by the Richter Scales was taken down on request by the DMCA. In the meantime, all Youtube has is this very poor quality video of a live performance where you can't even hear the lyrics that well, but it's the best I can give you as an immediate link.

According to the Richter Scales blog, the video was taken down because Lane Hartwell complained it used her copyrighted images of Owen Thomas, a tv reporter for heaven's sake. So he's a public figure and therefore his images are in the public domain. Ironically the video's still at Valley Wag. (at least when I blogged this post)

I'd like to know which videos on youtube don't use some copyrighted images of public figures. Youtube would go out of business if every video had every copyright checked.

I replied tongue in check on the blog that I think if they hadn't made fun of Larry Page and Sergey Brin the founders of Google who own Youtube, it might have stayed up. Since Silly Valley is about this big, I'm actually friends of friends of the founders and I think they have a sense of humor, but people are afraid. And frankly it really is a bubble.

How I can resist but to blog about a video with several men singing "Won't you blog about this song" in lovely acapella tune? Plus the video includes a baby blogging.

Richter Scales, I wish you well and I hope your bubble video gets back up on youtube.

Up with Internet Freedom and satire. Down with silly legalese. Satire is protected under free speech. Get a clue Youtube and DMCA.

Dear Santa Paws

I've been a pretty good girl this year. Here's my real wish list

1. No more hospital stays for Little T. I know a year is a whole lot to ask when we have only managed a few months, but that's my biggest wish.

2. No more visits to the ER or Urgent Care. Yes you gave us fewer than last year and they were not nearly as scary as previous years, but I'd really like none next year.

3. Little T's g-tube to be removed forever. His GI doctor says he's close - maybe 3 months and maybe that will allow my first two wishes to happen.

4. Better health for my parents

5. A service dog of my very own

6. A path to writing success

7. Peace for my relatives who struggle everyday just to get by

Thank you very much for your gifts this year including, but not exclusively:

1. Little T's improving health and learning how to talk

2. Little T's wonderful preschool teacher

3. Special K's love of reading and thriving in Kindergarten with her own wonderful teacher. And Special K's continued good health. Something I sometimes forget to mention, but never take for granted.

4. My friend L who drove me and my kids all over the place until I could drive myself and has in many other ways been a true friend this year.

5. C finally feeling things are okay enough to go ahead

6. My brother's healthy baby girl who also seems very bright and curious and social. Little T and she adore each other. As if in solidarity, she even has a hemangioma on her left arm, though hers is harmless like 99.7% of hemangiomas.

7. Our prosperity when others around the world including my own relatives have so little

8. Although I am never pleased to see horrible violence, I'm pleased that the world has noticed Burma just a little.

9. All the kind CCI people who showed me their dogs or sent me photos of dogs this year or wrote to me about dogs. You make waiting just a little easier.

The Newshour in HD brings me joy

I got an email last night from KQED that McNeil Lehrer...sorry.The Newshour with Jim Lehrer will be in HD starting 12/17. This makes me far more excited than it should.

C says "it's not like broadcast news where they have sexy anchors." Do I really want to see Jim in high definition detail? I do. Real news is not pretty or glamorous. It's like Jim, who's been around the world.

Happy Holidays, Jim. Please don't feel you need extra makeup or anything. We love you the way you are.

How do you take holiday photo cards?

As you may have read before, I have photo phobia, and holiday cards are no exception. Try to get two small children to look at the camera and smile at the same time. For me, it involves me singing Christmas carols and bribes of candy. Even then the photo comes out looking like I have two slightly deranged children (mad usually only when trying to get them ready for school or photos), instead of two adorable children (which they are most of the time). As you can see, I have photographic proof that my children can look adorable at the same, but they're not looking at the camera. And the dear friend who took this photo has other things to do. This was an entire afternoon of her time.

Does anyone have tips for me?

I took over 30 photos with the digital before patience gave way. I'm not sure if it was me or the kids who were more sick of the whole process.

So happy about my tea

I'm so happy to learn that my favorite tea Tetley advertises at least on its website "Tata and Tetley not only share a passion for tea but also a commitment to operate as a responsible business. Use these links to find out more about what we’re doing to manage our environmental, ethical and social impacts."

I had been debating if I needed to get a more expensive tea that I like less in order to have fair trade tea. I think fair trade is far more important than organic when it comes to foreign produce and of course tea doesn't grow here.

Pencils inspired our Halloween

After reading from a mom of a diabetic kid and thinking about how fat many kids are we decided to supply Halloween pencils stickers and spider rings for treats. We also had about 12 pieces of candy but those didn't go until the end.

Pencils were by far the most popular. "Cool! Pencils! I need them for school." exclaimed one boy. We bought 3 dozen Halloween pencils for a dollar a dozen and by the end of the night they were all gone.

It made me feel good that I was actually contributing to a child's education instead of their bad health.

I guess if everyone gave away pencils it wouldn't be special any more but Walmart and dollar stores are full of little cheap things. And maybe part of the reason pencils were so popular was that my husband was so excited to be giving them away. The kids had a choice but the pencils sat bright and shiny at the top.

Did you give something away this Halloween that interested you or inspired you? If not what could you give next year?

I'm almost done so now I can get sick

We're on the home stretch of completing my son's IEP so my body has decided it's a fine time to succumb to those half cold half flu thingy. I have a stuffy nose and sore throat and a few aches but no fever. I sometimes feel incredibly tired to the point where all I want to do is lie in bed and sleep and at other times I feel almost human.

I don't feel quite sick enough to justify my husband staying at home so this has lingered on for exactly a week now. My son's IEP meeting was on Monday and I rallied enough to be fully present there. I also rallied myself to go riding later that day. The rest of the week I laid in bed until it was time to pick up my daughter and then looked after both kids until about 6pm when I just waited for my husband to get home until I could crawl into bed.

This weekend we missed four parties and may miss the fifth one today. Yet yesterday I deal with an insurance issue and also the lingering portions of my son's IEP.

I need to get better so I can have some fun!

Fun with supplements

In our ongoing effort to treat Little T we're seeing a "whole wellness doctor" who ran some tests to see what supplements he needs. The theory is he gets enough calories between what he eats by mouth and his g-tube but his body is so depleted from destroying his tumor and rebuilding his arm that he runs out of nutrients he needs to convert fat into energy.

As always we tried to balance what he'll actually eat versus what he needs

So yesterday we bought

• Cod liver oil - Not just any cod liver oil but tested for mercury and other containments with a lemon flavor. It tastes like lemon oil with a hint of fish. It's actually quite nice. Today Little T asked for a second teaspoon even though his daily dose is one.
• Gummi Vites -2 Gummi Vites provide not as much minerals and vitamins as his doctor wants but he wants it. His sister asks for them everyday.
• Organic Carrot juice - a great source of beta carotene aka vitamin A which he needs more of and loves
• Grapeseed oil for high heat cooking - apparently canola oil aka rapeseed oil is bad for you at high heat. Who knew?
• Bifidus - We bought this earlier. It's a probiotic powder. We had to experiment a while to see how he'd eat it. It's a tasteless white powder but very goopy so it won't go down the g-tube and he doesn't like the texture. Today it went down easy in cream cheese.
  

Things we're still having trouble with

• Zinc - The Gummi Vites provide some but he needs more for healing. I thought we had some good zinc lozenges from Trader Joe's that also provide Vitamin C. However today I discovered they also provide slippery elm aka aspirin. He refused it today so we need something else he will eat. Probably another trip back to Whole Foods to see if they have zinc lozenges without slippery elm that are more palatable to him.
• Whey protein - He needs it to help him build more muscle mass. All his muscles are small and underdeveloped. We may have to keep searching for the right whey powder. The whey powder industry seems largely unregulated and I'm concerned about growth hormones and toxicity. So far he didn't like it in milk. I'm not sure if it's the whey powder or the medium. Special K said "it tastes bitter."
  

We'd also supposed to give him more nuts avocados and beans.

Being a complete geek I have a google spreadsheet to keep track of which supplements we're all taking each day.

Anyone have any tips for kid-friendly zinc or whey powder?

Dear smiley face school bus driver

You signed your note with a smiley face instead of your name. From how you wrote your note I presume you're the driver that will be taking my son to preschool.

Thank you most of all for taking the time to drive to my son's house ahead of time to make sure you know where it is. I can not tell you the thoughtfulness that represents to me.

Thank you for leaving me a beautifully written note with clear directions on what to do and your name and number.

I still don't know what you look like but I at least know you don't look like this: since you're both female and I can't imagine him leaving a note like that.

I hadn't realized until I read your note that was my secret fear. Thanks smiley face!


Mom sending her 3 year old for the first time on a school bus

Does anyone have any tips for me for further school bus happiness?

Madeline L'Engle's time has passed and I regret I never wrote

With the death of Luciano Pavarotti and Madeline L'Engle two icons of my childhood have died one day apart. Madeline L'Engle was primarily famous for her children's books especially a Wrinkle In Time.

I read her books relatively late in my young reading life. I didn't move to the US until I was nine but I remember Meg well. A Wrinkle In Time was the first book I read about someone who was awkward and angry at a world who didn't accept her but lived in a quirky intellectual family that clearly loved her but didn't always understand her either. Like Meg's family my parents reacted with bafflement that the world didn't appreciate my wit and intellect and in fact teased and derided the very things my parents valued the most about me.

In many English children's books that I read such as The Lion The Witch and the Wardrobe or even Harry Potter the parents are absent and I could not relate at all to Judy's Blume. But Meg's parents were so present and yet so helpless to help Meg with her difficulties in school. If my life was a novel or movie the book would have launched a grand scene of understanding between me and my parents. Instead it began a long journey in which like Meg I slowly realized that my parents were flawed people who would need work and understanding to get to a place where they had some idea of who I was.

In college I and some friends actually drove from Philadelphia to Maine to hear L'Engle talk. The two things I remember were how bright the fall leaves were compared to the more drab colors in Philly. And the revelation that L'Engle was also a staunch Christian and writer of adult books. She talked about how God was everywhere. I went outside in nature and I saw deity that day. And began a different journey.

I have few regrets in life but I think one of them is that I never wrote to her and told her the two ways she impacted my life. I don't think much would have come of it but I do believe now in telling people my important truths. I always meant to but I thought I had more time. In college I had classified her as "old" but I didn't realize she was in fact truly old and that she might die if I waited twenty years.

I have not launched a grand campaign to write to my childhood icons but I am more aware now that they could pass away. I'm still working on the more immediate problem of arranging my son's special education but if my blogging causes a small ripple in the universe than I do ask the universe to please let them live just a little longer at least until October when I can think about writing to people about matters other than my immediate family.

Fridges and writing

I went so far as to call Samsung and talked to second tier support aka technical support. After several minutes of back and forth the guy told me with some surprise like "The models today have curved handles." Oh!! I look at Lowes and there is the fridge perhaps of my dreams in all its shiny beauty.

I also realized I've gotten into the bad habit again of telling myself I'm not a writer because I don't write. I do write every single darn day. Most of it is stuff directly for Little T. Letters and plans. Some of it is blogging. Today's writing besides blogging was to write a letter for myself telling Paratransit why it's unrealistic to expect a person with a movement disorder to put in car seats. Then maybe I can actually go places with the kids by myself that is not walking distance of my house. What a concept. At some point I will get through the mound of paperwork needed to get the help Little T and I need to just live our lives. But instead I spent my time on the phone about shiny fridges so someday I can open my fridge door without pain.

Borrowed happiness with money

Rob Brezsny wrote once "Money can't buy you happiness but it can let you borrow it for a while while you figure out to get it for free."

Yesterday we bought me a shiny new laptop. See how it shines. Sturdy magnesium chassis a label stuck next to the touchpad reads. No shiny. Sturdy too.

I used to use my husband C's laptop but its power supply keeps dying and usually it's dead just when I have an hour to write. I must confess that 80% of my writing has been writing stuff for Little T and I mean letters to bureaucrats and doctors on his behalf. The other 20% is blogging. The only way I seem able to write these days is to leave the house entirely away from the numerous Little T letters that keep wanting to be written.

Once away other things ask to be written but I have no laptop. I need to rewrite my picture book. And I have a novel but I have not actually worked on enough to know what is yet. Just who the characters are.

My nonfiction book sits there waiting impatiently to be finished but I tell it that I just can't. We're back in hospital hell. And the book revisits hospital hell in graphic detail. "More fuel for me" the book says in the candid tone it is written. "I think I have enough material and I need a bit more distance." But it will get finished. I just need. Well I'd like to just get the hell out of the hospital.

Tomorrow we will literally spend all day in the hospital with our son who has been deliberately kept awake. Tests will be run. It will probably be hellish. The only bright spot in this otherwise dismal day will be the arrival of our WII. Oh and we bought WII play yesterday and we'll buy another WII game. Ye gods I had no idea these video games systems were so expensive.

Little T turns three next month. For the first time ever we have bought one of those party packages at a party place. Money buys me time and the party we had at the place for bigger kids made Little T happy. It's also a celebration that Little T can actually go to such places.

I also bought a package for Special K for April. She wanted one this year but by the time Little T was clear to attend such places the place was fully booked.

We also test drove a Honda Odyssey and Toyota Sienna. So clear who wins. It's our bid to trade money for the ability for me to drive again. We'll see if it works.

So I'm doing my part to keep the US economy afloat.

And I hope it lets me borrow some happiness for a while. But I would trade it all for better health for Little T. Unfortunately that I can't seem to buy.

Very very busy. Long time no write.

I went to a special WWI party hosted by Nintendo and a local mommy blogger called CityMama. Nintendo gave me a special number to call and get a WII. So I bought one. More later.

Still life then onward into battle

My world was quiet and silent without the kids while they and my husband went camping this weekend. I relaxed a lot and watched a lot of tv. The first thing my husband said when he saw me was "You look refreshed." But oh I missed them so! Their loud calls of "Mama mama!" and their constant need to touch.

And today I plunged back into the stress of dealing with insurance. My husband's company changed insurance yet again. And of course the first time it was all wrong. And of course the wrong code was not for me or for my husband who aren't the ones with tons of authorizations but for the children. Of course my son is the one that has the authorizations.

After several hours I think it may have been sorted out so I can fight the battle of actually getting speech therapy for my son. But the day is not over yet so we shall see.

Special needs playgroup

Finally last Sunday we made it to the playgroup for the parents and kids of special needs who are on this local email list.

We all had a wonderful time. Another kid with CP who was aged five came over to me. Instant recognition. When Little T was busy elsewhere he wanted me to play with him. I had a loads of fun with him. I knew how to encourage him. When to offer a hand. That a hand on the back is reassuring while allowing him to do it himself. We ran the same sort of trotting run that Little T does. We laughed.

Little T also played on the 4 seat teeter toter which is the best PT and OT device EVER. Two hands required and lots of bouncing.

First swimming lesson

Today Little T had his first swimming lesson along with Special K. He wanted me with him in the water. I forgot my bathing suit. So I just stepped in with my clothes. He kicked a lot and had a wonderful time. Special K had initial trouble with the kick board but the lessons from last summer seem to be coming back.

The pool was a warm 90 degrees. Outside was alternately warm and freezing when the wind blew.

I climbed out soggy and wet and a couple people stared. There wasn't really anything to stare at since I fortunately wore clothes that were not see-through when wet. Wet clothes are not a big deal since I was going right home. Slightly cold though.

Somehow this seems a strange metaphor for my life. I am never quite prepared and yet I plunge in anyway.

Reading is scary and unregulated

When my daughter turned four she asked begged me to learn to read. I'm a big reader myself. I had this inkling that maybe it was kinda young but she was really eager. We started off kinda haltingly as I tried phonics without success. Then we figured out she was more of a sight reader. By the time she turned five she could pick up a picture book and read it.

She also wanted to learn to write so I got her some writing workbooks. Through writing she's learning phonics. I found the workbooks vary a lot in quality. Some have directions that *I* found hard to understand. I recommend Spectrum which you can buy at Amazon or Borders.

Now she's a reader. She reads to herself all the time. She goes to the library and checks out tons of books. She really prefers books "with a picture on every page" aka picture books. As I've discovered the reading level on picture books varies a great deal and she can read all of them.

I've also discovered that I can no longer read my email in front of my daughter. No I don't get porn or anything but the odd Cialis ad makes it through my spam filter. Once my daughter walked up to the screen at just the right moment as I was deleting spam. She asked "Mommy why are you getting email about pills?" Long pause while I try to think of a truthful answer that doesn't get into much detail. "Well honey it's a commercial (we've talked about commercials before) They think I might want those pills but I really don't need them." "Oh" she said and walked away. Now I don't read email in front of her unless I know who it's from and what it's about.

The other day I talked to a librarian about my daughter's sticking to picture books. I wondered if it was okay. She said "Sure. Picture books go all the way from preschool to sixth grade in both reading level and content." I nodded my head. The librarian gave me a really serious look. She said "You need to be careful with these early readers. They can start reading subject matter that they have no idea how to deal with." I nodded my head thinking of Cialis. She looked even more serious. "You need to read the book before you let her read it."

I must have looked confused. I do watch an episode of every show I allow my kids to watch. I vetoed "Jon and Kate plus Eight" because those parents just snipe at each other constantly. They just seem so stressed to have eight kids with no other help. But picture books? I mean they're just picture books. Right?

The librarian walked me over to the picture book section. She gave me this book called The Tin Heart. The cover had a sweet picture of two girls and a tin heart with two pieces. I skimmed the beginning of the book. It started out innocently enough. Two girls in the Civil War. The father of one made a tin heart and gave each of the girls half of the heart. It talked a lot about their impending separation. All sweet and sad. Just at my daughter's level.

Then suddenly with no warning in the middle of the book.....runaway slaves. Now I understand slavery is part of the Civil War and part of our nation's history. And someday I will explain slaves to my daughter. And genocide. And torture. And Vietnam. And Guantanamo. But she's only five. She's still having trouble with the concept of "I won't be your friend anymore."

To say I was shocked is compare slavery to "I won't be your friend anymore." I was calling my husband on the phone as soon as I was home alone and babbling incoherently to him. It's not that I think picture books must cover subject matter appropriate to a five year old. It's that I expected there to be some warning. Some indication that the content is other than for preschoolers.

For example another book called Team Mates had on the cover an African American man in a baseball uniform and a white man in a baseball uniform. On the back it contained words like "segregation" and the "Negro Baseball Leagues". I skimmed that book and it talked about segregation and how there were two leagues and such. Nothing about slavery. As the sister of a special needs brother my daughter already unfortunately knows that sometimes people are mean to other people just because of the way they look or act. I told her she could read that one with a grownup.

Anyway I want to thank that librarian for giving me an education. You can bet that I'll be reading skimming all my daughter's books until I feel she's old enough to deal with any subject matter that might come up.

Even chapter books that feature sweet photos of a fluffy dog are not five-year-old safe. The back merely said it was about a dog from the pound and some sort of mystery. Midway through the book another dog dies. I asked my daughter if she wanted to read a book about a dog that dies. "No" she said firmly. That book went away too.

I'm also a little angry. I ask myself why books for kids aren't rated. I personally find reading and then imagining something to be infinitely more scary than anything I could watch or hear. I think it's because books are undervalued.

Don't get me wrong. I think the rating system for visual and aural media is far from perfect. I still have to watch/hear it before I'll give it to my daughter. However right there on the cover I have a good idea of what I might be getting into. I don't have to go halfway through before I realize "not appropriate".

Crossposted to Silicon Valley Moms Blog