Tuesday, July 29, 2008

Team Midwestern Mommy

Updated Update: Lisa got more testing done. The results say her initial diagnosis was wrong: it's NOT cancer! She is still very sick, and may eventually need surgery. For a full update on her condition from Lisa herself, check here.

Clearly the buttons worked ;) So you can take them down now! But please continue to offer Lisa your support, as she still likely has a rough recovery ahead.

Update: Lisa's had a second opinion from a doctor who said the mass in her abdomen may not be cancerous. But we still don't know for sure. She's awaiting more testing. I'll keep you posted.

I've made this button in support of Lisa from Midwestern Mommy, who has just been diagnosed with cancer:

Lisa is a mother, and a wife, and a sister, and a daughter, and an excellent writer, and a great friend, and a good person. She has helped many people, including me, get through dark days. In fact, the very first time she visited my blog, she commented, twice, on this post, to reassure me, after my son was first diagnosed with a sensory disorder, that everything was going to be all right, and she knew it, because her son had struggled with sensory issues too. She offered to talk to me, a complete stranger at the time, over the phone. And then she gave me an entire page's worth of kind and useful advice.

Because she's just that kind of awesome.

Please feel free to copy this button and put it up on your site to support Lisa. I'd appreciate it if you'd link the button back to this post, so other people can read about Lisa, copy the button, and go visit her site.

Then remind all of your readers to click through to Midwestern Mommy, and leave a kind comment or send an email showing support.

Here are some other posts in support of Lisa:

Mamalogues: With a little help from her friends

Little Bald Doctors: One of Us

Slacker-Moms-R-Us: Midwestern Mommy Needs Support of the Blogosphere

RebeccaGhost: Love and Support

A Bun's Life: Midwestern Mommy Needs Our Love and Support

Parachuting Without a Net: Prayer Request

Little Miss Sassy: Damn the C Word

IzzyMom: A Friend is in Need

Dawn's Diversions: Prayer for a Lady We Don't Know

It's All for the Best: My Heart is Breaking

The Karianna Spectrum: Woe is Not Me

Mamma Loves: Friends

Green Eyed Momster: One of Those Days

My Second Journal: Prayer - Good Wishes Request PLEASE

Stop Screaming I'm Driving: And Now

Stolen Moments: Lisa

Charming and Delightful: Send Some Bloggy Love

Sugared Harpy: OMG

Life's Little Adventures: (almost) Wordless Wednesday

One Dad's Life: Please Show "motherofbun" Your Support

WOBL in Training: Lisa

Chicky Chicky Baby: I May Be a Heathen, But I Know When Someone Needs My Prayers

Go Visit Lisa at Midwestern Mommy

Go there right now and offer her some support. She's just been diagnosed with cancer.

(And she's Twittering from her hospital bed. Because she is hard core.)

I have met Lisa in person and she is one of the nicest people around. No one ever deserves cancer. But Lisa especially doesn't.

Monday, July 28, 2008

On BlogHer: Part Two

BlogHer needs to be two weeks long. I am so serious.

While I was at BlogHer, I wasn't just playing. I was working, for two sites: and For MOMocrats, I was attending political blogging panels, helping to craft a position paper on health care to be sent to the Democratic Party for review in creating this year's party platform, meeting with other political bloggers who are planning to cover the Democratic National Convention to talk about potential cooperation, networking with other political bloggers and bloggers who are interested in politics, etc.

For Predictfy, I was coming up with a series of questions directly inspired by BlogHer events and panels I attended. (In case you'd like to go and make a prediction, I asked two questions about Twitter, one about the national debt, one about government-sponsored universal preschool, one about Clinton supporters voting for McCain, one about blogs at the Republican National Convention, and two about the Veepstakes.)

So I was busy while I was there. Like, super, crazy busy. I brought home a stack of business cards as thick as a Bible (which incidentally I am still going through, so if I haven't gotten back to you yet, do not despair— I'll get to you).

And I was so busy I only got to talk to some people I really, really love to read and had never met before, like you and you, and you for, like, five minutes. And I also only got to talk to some people I haven't really read much, but discovered at BlogHer I clearly need to be reading, for like, five minutes. And some people I have met before but really, desperately wanted to speak with again got the same five-minutes-from-Jaelithe treatment. Which, you know? Kind of sucked.

I barely got three hours total in crowded company with my girl Deb, who begged and pleaded and schemed for months trying to get me to go to BlogHer, who was the person who finally convinced me I should go, damn the consequences, and who was instrumental (along with the other MOMocrats) in getting me there.

I managed to spend about an hour and a half talking to Christina but it was pretty clear to me we actually needed to talk for five days.

And I did fit in some World Domination brainstorming, and a nice discussion about shoes, with a woman who really ought to be elected Queen of the World, because, seriously? If she were, the trains would run on time, and we'd all be given our inalienable human rights back.

The person I got to spend the most time with was my roommate, who took me to visit awesome folks in Oakland, helped me figure out how the heck to ride BART, taught me the history of the yo-yo in the United States, and also regaled me with incredible stories of her brief, accidental encounters with a very famous Hollywood actor I shall not name. Dude. Best. Roommate. Ever.

Anyway, my point is, next year, BlogHer needs to be two weeks long. And somehow magically cheap enough that I could actually afford to attend for two weeks. And also someone needs to make all of BlogHer a national holiday, so no one actually has to take off of work to be there. Because that is the only way I'll have time to go to fantastic panels with wonderful speakers, and witness amazing life-altering community keynote presentations, and also pretend I'm not really stalking my favorite famous bloggers, and hang out with every single one of my friends. And also get swag. And meet Sesame Street muppets.

(Oh, and also, next year? All high school drama needs to be checked at the door. Else I'll be forced to whip out The Mom Voice. And I am a master at The Mom Voice. Kthanxbye.)

(P.S. If I left you out of this post, it was so NOT INTENTIONAL. See above entire post for why my brain was frazzled. Thanks.)

Thursday, July 24, 2008

On BlogHer: Part One

The Community Keynote: Twenty-one women and one man, bloggers all (and therefore I imagine mostly introverts and probably mildly terrified) took the stage in front of hundreds of people to read some of the funniest, most revealing and most poignant pieces of writing I have ever encountered.

It reminded me that so many bloggers really are writers. Good writers. Many of the writers on that stage were absolutely as good as any I have seen on a printed page.

But even more than that, it reminded me how incredibly powerful what we do really is. Seeing women stand up on stage and talk about things like mental illness, body image struggles, pregnancy loss and suicide, and then seeing those women receive standing ovations from a supportive crowd, made me more aware than I have ever been that blogging matters. That even what I write here, in a little backwater corner of the vast and varied internet, matters.

Never before in the course of human history have so many ordinary people, particularly, so many ordinary women, been so empowered to share their life experiences through the written word. And it seems to me that, as more voices are amplified and preserved by this extraordinary medium, more people who are yet afraid to speak are discovering that someone else has already told, or is already telling, a story that echoes their own.

On the day when I wrote my very first post here, I was feeling so incredibly lonely. My first and only son, whom I loved more than anyone I had ever met in my life, was slowly starving himself. I didn't know why. I'd taken him to a dozen different doctors, and none of them seemed to know why, either. I felt like a terrible parent. I felt like a failure. Whenever I was around the few other parents of young children I knew in person, I was a terrible person to talk to, and I knew it. All I could think about was the fact that I was failing at the absolute most basic responsibility a mother has: to nourish her child. And so all I could talk about was failure. Failure to thrive. Not my son's failure, I thought. Mine.

No one I spoke with, none of the doctors, not even my own husband seemed to understand at the time how I felt about this failure. How it had not only taken over my thoughts, but possessed my soul.

I wrote about it because I had to. The words were already in my head unbidden and desperately needed a place to go.

I put the words where others might find them because leaving them in journal under my bed or in a file somewhere on my computer seemed almost like leaving them in my head. And I needed them out. I needed the possibility that someone else might read them.

But I didn't really expect anyone to.

And yet, here I am, years later, and several of those who read those first words are still here, reading these words, today.

(Thanks, by the way.)

On one of my darkest days, I shouted my sorrow into what seemed like an empty room.

But there were echoes.

I've been there, too.

I understand.

I can't understand what you're going through, but I'm a mom, too, and I do understand your love, so I still want to help.

It saved me.

There have been plenty of days, since then, when I've forgotten that, a little. When I've questioned the point of my spending all of this time writing here, in this particular forum, not gaining fame, not getting paid.

You see I sometimes think that maybe I don't need you all quite as much as I used to. My son's health is better. My life is better. I'm a more confident parent now.

But the keynote snapped me back to that first post. And suddenly I realized that not only did I still need you all as much as I always have needed you, even before I knew I needed you, but also, some people out there right now might still need me.

I'm not just telling my story. You're not just telling your story. We're telling our story. The more voices, the better.

I don't think I'll ever forget that again.

Monday, July 21, 2008

Conversations with a Four-Year-Old: Bees

CHILD flutters one hand near MOTHER'S face.

CHILD : Buzzzzzzzzzzzzzzzzz. Bizzzzzzz. BUZZZZZZZZZZZZZZZZ!

MOTHER: Is that a bee?


MOTHER: Oh, my goodness. Is this a nice bee or a scary bee?

CHILD: It's a nice bee.

MOTHER: Oh, that's good. So I don't have to be scared? Does it give kisses instead of stinging people?

CHILD rolls eyes.

CHILD: No. It doesn't give kisses. It pollinates flowers.


CHILD: It just visited one flower, and now it's going to visit another flower. And now that flower will be pollinated. And then it grows other plants.

MOTHER: Right.

Wednesday, July 16, 2008

I'm Going to BlogHer

And I just wanted to mention that I would not have been able to go this year, for the first time ever, if some of my fellow MOMocrats hadn't chipped in toward my flight.

Thanks, friends. You surpass awesome.

While I'm at BlogHer, I'll be making predictions on behalf of which is a totally cool site you should really check out, and I'm not just saying that because they paid my registration fee. Really, it's fun. Look for me under username MOMocratJaelithe.

And also I'll be looking for potential speakers ans sponsors for Inter:PLAY STL on behalf of the St. Louis Bloggers Guild. And I'll be brunching with the Silicon Valley Moms. And possibly stalking some people. Probably mostly Bossy.

Tuesday, July 15, 2008

Those Parents

Those parents. You know the ones. The ones with the kid who is red-in-the-face screaming and thrashing and flat-out refusing to do what the adults around him are telling him to do. You think to yourself, that child is out of control— he is making a scene— he's upsetting the playgroup or disrupting the class or tormenting everyone in the store with a high-pitched keen— why don't those parents of his do something about it?

As a parent yourself, hey, you understand that every kid has a bad day now and again. But these parents, they don't seem to be disciplining the kid at all. In fact, instead of telling him in a stern voice that this behavior is unacceptable, they're cajoling him. They're pleading with him. Some of your fellow witnesses to this scene are rolling their eyes or shooting disapproving glares or maybe offering scornful, unsolicited advice.

They look weak and ridiculous, not at all in charge, those parents, and you conclude instantly that the reason this kid is acting out like this today is because his parents must not ever take a proper stand against this kind of behavior. And maybe you pat yourself on the back, just a little, because you know you're far from perfect, but, hey, at least you're pretty certain that you're better at this kid-raising gig than them. Those parents.

I know I've done it before. Felt a little smug.

But among the lucky consequences of being the mother of a child with a developmental disorder, I must count the fact that perspective whacks me in the face quite regularly.

You see, at Isaac's first swim class a few weeks ago, my husband and I looked a heck of a lot like Those Parents.

Our child, who is the darling of his music class teacher for his eagerness to share instruments with other children, and is beloved by the librarians at our local library for his ability to sit quietly during storytime. Our child who knows how to stay seated at restaurants, remembers to refrain from talking in a movie theater, and has never once broken a single item in a retail store.

That child?

Was the screaming-kicking-clawing-not-listening-trying-to-run-away-
to-Australia-child-who-must-be-possessed-by-demons at his first week of swim class.

And we were the pleading parents on the receiving end of other parents' dirty looks.

You see, children with sensory disorders don't always do well in enormous, cold, chlorine-scented pools surrounded by thirty strange kids who are squealing, laughing, kicking and splashing each other with water.

And child who is two years behind his age group in gross motor skills because of the balance issues caused by his sensory disorder can become very confused and disoriented when he suddenly feels like he weighs much less than he ordinarily does on land.

So Isaac was terrified of swim class.

It's very important to me that my son learn to swim. Knowing how to swim could save his life someday.

It's also very important to me to instill in him the belief that his sensory disorder should not hold him back from doing what other kids do. I often say to him, "If something is hard for you, that just means you have to work harder."

But as his mother, I feel his fear like a knife in my chest. It pains me to see him struggle so much harder at something that comes so easily for so many other children. And my heart aches all the more as I catch glimpses, here and there, of a dawning awareness on his part that he is different.

So on that first day of class, when he clawed his way up my chest like a cat in a bath when first I put him in the pool, I put him right back in. When he cried, I said, "I'm sorry, but you have to keep trying for a little while longer. You're staying in." When he got angry and screamed at me like I was trying to kill him cold blood, I stood firm.

He was out of control. He was making a scene. And both of his parents were sitting there at the edge of the pool, holding his hand. Coddling him. I could feel the disapproving glares of other parents, strangers, on my back. They were waiting for me to shout at him, put him in time-out— do something, anything, to quiet him. To put him in his place.

But damned if I was going to make him feel like he was doing something wrong when I knew he was trying harder than any other kid there.


Since the first few classes, he calmed down a lot. It helped that after the second class, his indifferent first teacher was replaced by a calm, gentle girl I'll call Lexi, obviously sent to us by some pitying Angel of Swimmers. All of sixteen years old and yet somehow as patient as a glacier. He still won't dunk his head under the water. All the other kids in his class are jumping off the diving board into the lifeguards' arms now, and he's still learning to blow bubbles.

But he smiles when he gets in the pool now. And that's a start.

Monday, July 07, 2008

Interview with Margaret Donnelly

Just wanted to give anyone who might be interested a heads up that I recently interviewed Margaret Donnelly, the first woman ever to run for Missouri Attorney General, over at MOMocrats. And today I also brought up the subject of politics over at The St. Louis Bloggers Guild.


Local readers, I have a question for you: which Missouri (or Iowan, Kansan, Nebraskan, or Illinoisan) politician would you like me to stalk interview next?

(Local politicians who may be reading this, if you'd like me to interview you, please feel free to chime in. Except for you, Shamed Dogan. I don't interview people I went to high school with.)

(It's for the greater good that I don't. Really.)

Sunday, July 06, 2008

Hoping in Circles

This makes me want to bang my head against a wall.

Kids who need help, kids like mine, kids like Karianna's, kids with OFFICIALLY DIAGNOSED medical issues that make it harder for them to learn in traditional schools, are falling through the cracks RIGHT NOW because of this kind of Byzantine bureaucratic nonsense. Educators who know kids will need help to succeed in the classroom are forced to turn children away knowing they need services, or lie about the kids' conditions to get them the help they need.

In the long run, refusing to provide early intervention to children who need it costs public schools— and taxpayers— more money than it would to provide services to every child with a serious motor skills, adaptive skills or social skills delay.

Because small children who have motor delays have trouble mastering skills like paper cutting, and writing. Small children who have adaptive delays have trouble unzipping their jackets, putting their things away in their lockers, or going to the bathroom by themselves. Small children who have social skills delays fail to understand directions, or get into arguments with other children and teachers. Small children facing these challenges who are not receiving any help in learning how to deal with such challenges can find a school environment baffling and frustrating.

And small children who find school baffling and frustrating because they are not getting any treatment for a disorder that is totally beyond their control often turn into pre-teens and teens who HATE school and skip it, or who test below grade level even though they have average or even above intelligence, or who behave disruptively and prevent other kids from learning. When a district refuses to pay for early intervention for a child who needs early intervention, a decade later that district often ends up paying for anti-truancy programs or tutoring programs or increased security at schools.

I seriously doubt Karianna's son Cat will wind up being a truant or a troublemaker. I doubt any such thing will happen with my own son, Isaac, either. Because both of these kids have mothers fighting tooth and nail to help them become successful learners by whatever means necessary, even if that help has to come from outside of the school system. But not every child has parents who have the time or resources to secure other services.

Health insurance companies often refuse to pay for occupational therapy, physical therapy, or psychiatric therapy for children with autism spectrum disorders or sensory integration problems, and if insurance companies do pay for these services, they often severely restrict the number of visits a child can have during a year.

Because of the reluctance of health insurance companies to pay for such services, many occupational therapists and physical therapists and development experts who specialize in working with children cannot find steady full-time employment anywhere EXCEPT within the public school system. So even if one has insurance that would pay for such services, it can be very difficult to find a qualified therapist with an opening.

I spent six months searching for a specialist who could treat Isaac. I spend hours each month hacking through red tape to get my insurance company to authorize and reauthorize and rereauthorize his treatment, and the only reason I don't spend DAYS each month doing this is because our family doctor goes out of his way to make a lot of the calls for me. And I consider myself lucky to be able to spend hours arguing with a balky insurance company, because families of kids with developmental disorders often find themselves much worse off.

I understand that public schools are nearly always strapped for cash and makng compromises. But investing in a little extra help early on for kids who need it is actually a proven way to economize in the long run.

So why aren't more schools doing it for more children?

First Fruits

Tomatoes, meet your new friend, Basil.

I gave one of these first two tomatoes to my next door neighbor. Who promptly ate it whole, in front of me.

Tuesday, July 01, 2008





(Alternate Title: Death to All Sunflower-Eating Rabbits. Except They Are So Fuzzy and Cute. Why Are Ruthless Engines of Destruction Fuzzy and Cute?)