Sunday, May 29, 2011

We don't need your money,
but please give it to us anyway



This is probably the worst possible way to kick off a fundraiser, but I can be pathologically truthful, so here goes:

We don't need your money. I cannot tell you that without it Malachi will not get every treatment we think is reasonable and effective. We will dip into our emergency funds, take out credit cards, have date nights at McDonald's and do whatever else we can to afford it. We do, after all, have money in savings and change on our nightstand and thus we are richer than the vast majority of the world. I firmly believe that every budget — from our welfare-qualifying single income to the massive federal budget it comes from — is an expression of priorities, and when you pit "the possibility my child will walk one day" against "I could really go for a burger right now," it's pretty clear which one you pick.

That said, donations would make our lives much easier as special needs kids are more expensive than even the garden variety. Malachi is as yet young and therefore many of the things he needs are medical treatments that we believe are effective, but our insurance company won't pay for. (You can read this list of alternative treatments we've tried.) As he gets older, there will likely be expensive adaptive devices, but I don't want to think about that right now. Right now, I want to think about how to get him as much functionality as possible.

To this end, we are excited about a method called Feldenkrais or ABM (I don't have time to get into the subtle differences between the methods). I've told you about it before, but after an intensive course of six sessions in three days, I understand it much better and am really excited about the changes I've seen in Malachi since. He is now rolling over, making many more sounds with his mouth, eating solids better, reaching above his head more fluidly and overall seems happier — more comfortable in his skin. (That last bit alone would make the treatment worth it to me.)

We would love to be able to do this with Malachi every month and even though our practitioners are taking big discounts, it's still pretty expensive to do so many sessions. Added to this are monthly CranioSacral appointments, co-pays/deductibles on allopathic doctors' appointments, the occasional Chinese medicine appointment and, coming soon, hydrotherapy appointments. (Too bad I can't charge it all to a credit card and get frequent flyer miles out of teaching him to walk. Oh, the irony.)

So since June is the twins' birthday month, I thought now would be a good time to pass the hat. I've set a goal of $1,000 by the end of the month. Part of me feels this is overly ambitious, but another part tells me there are at least 100 people out there who are saying: "Man, I could sure go for a nice $10 burger right now, but hmm... maybe I could help that one kid walk, instead. That'd be cool, too."

Indeed it would, kind sir or madam. Indeed it would be cool.

So go on and click that button and put in whatever figure you feel you can afford. As I laze about in the grandeur of my 792-square-foot house (no, I did not forget a digit), cooking gourmet meals with close-date sausage I bought on food stamps, I will think of your kindness and praise your generosity.

And hey, if you ever need $10, let me know. After all, we've got money.





I should also mention that ALL donations will go directly and exclusively to paying for Malachi's therapy bills. If somehow we exceed our goal, we will do a happy dance (which we just might post a video of here) and keep going. It would be wonderful to be able to do Feldenkrais more often or have the option to explore another type of therapy.

Thursday, May 26, 2011

Hooray! Malachi's doing That Annoying Thing That Jaden Does!

One of the best things about being a parent of a special needs child is that you never take a developmental milestone for granted. Other parents have the luxury of being annoyed that their child is now able to snatch things, or crawl anywhere or run away. This is only because they haven't seriously considered the alternative.

For me, on the other hand, the thought that Malachi might one day be able to move fast enough to get into trouble while I've turned my back for a split second fills me with joyful hope and the idea that he might not is a constant nightmare. When people at the store chide me with: "Those two are going to be running all over the place next year," I smile and nod while thinking: "God, I hope so."

So, in contrast to most parents, I don't get upset or trepidatious when Malachi learns a new skill. I revel in the too-loud shouts that mean his diaphragm is strengthening and the small battle I wage every feeding to keep his increasingly dextrous little fingers from grabbing the washcloth under his chin. Indeed, I would go so far as to say I am a saint-like mother who cheers every one of her son's accomplishments no matter how much more work it means for me, because I know that him NOT accomplishing those things is so much more work — not to mention worry and sorrow.

Jaden, on the other hand, is getting fitted for hobbles and handcuffs next week.

This little monkey manages to scatter anything not tied down, rip out my hair faster than I can say "no," and recently figured out how to get out of a supposedly baby-proof Bumbo chair in 30 seconds flat.

When Jaden learned to roll over, we were treated to weeks of The Continuing Adventures of the Boy Who Never Sleeps. Every time I would put him down to nap, Jaden would promptly roll himself over and play with his hands or babble to nobody or kick his feet. I would wait a while and then roll him back, which he thought was a hilarious game. He spent hours over those weeks just lying awake in his crib before he learned how to roll himself back the other way. Malachi, meanwhile, slept on — blissfully unaware that such a thing was possible.

... that is, until today.

Today, I had to roll Malachi back over three times before he gave up and went to sleep. My stern Go the F**k To Sleep act was ruined by my joyful tears and the grins on his face that I couldn't help but return.


So proud.

So, Malachi, feel free to yank on my elbow during diaper changes, snatch objects you're not supposed to have and wander away from wherever I put you on the floor. Such things would make me happier than you can imagine.

But you know, there is at least one Annoying Thing That Jaden Does that you should feel free not to copy him on.

video

UPDATE: For those who can't see it (like iPhone users), above is a video of Jaden making an obnoxious noise that would be what a duck would sound like if it could screech.

Sunday, May 22, 2011

Why does God allow suffering?

© Jaime Valdez Photography


Typically when someone comes to the door I either A. Don't answer it. or B. Point to the "No soliciting" sign, say, "no thanks," and shut the door.

So when a Jehovah's Witness came to my door the other day, I'm not sure why I didn't do either of these things. Instead, I listened to his introduction until he said:

"Why do you think God allows suffering?"

To my great surprise, I laughed a little and answered promptly with the air of a schoolgirl reciting a lesson:

"So that we can learn."

Then he asked:

"What do you think we're supposed to learn?"

"How to be better people."

I thought this was a pretty good answer and didn't realize until long after he'd left that it was not at all the one he was looking for. I didn't understand how any of what he said after that had to do with God allowing suffering and eventually realized he didn't have an answer to his own question.

The whole thing made me feel like I'd just taken part in an inkblot test. It's not often that someone walks up to you unexpectedly and asks your philosophical views on the reason for your pain. I was quite surprised to learn that I had an answer on the tip of my tongue. But what did it mean? And do I really believe that? Do I really believe that Malachi had a brain injury to teach me how to be a better person?

If so, I think it's working. I never accepted how prejudiced I was toward people with physical and mental disabilities until my son was one of their number. In many ways, I still am prejudiced, but I'm getting much better: I saw how cool a wheelchair-bound man's backpack was; I enjoyed seeing a severely disabled person's delight at the sunshine at the zoo. I wouldn't have even seen those things before. My eyes would have slid right on passed them.

I also feel more compassionate towards others — I know that the bad things that happen to them are not because they are bad people or stupid people. I'm more likely now to take it as a given that they tried their best to achieve the best outcome, but that it wasn't in the cards for them.

Before, I would say: "Don't build your house in a flood zone, dumbass." Or, "Put down the KFC, chunky, and maybe you won't get heart disease." Or, "Duh, take better care of yourself when you're pregnant and your kid won't be screwed up."

Now I know that these are lies we tell ourselves to make us feel immune to that suffering, to make us think that we're safe from tragedy because obviously we would never do something so stupid. Now I know you can try your hardest to avoid catastrophes and still run smack dab into them.

So perhaps I have learned something and perhaps I will become a better person. But, wow, what a terrible price and why does Malachi have to pay it? Even Jesus got to live for 33 years before being asked to make a sacrifice. It hardly seems fair to exact the cost of my shortcomings from the brain of my newborn son.

I guess what I'm saying is, I still don't understand, God. Why do you allow suffering?

Tuesday, May 17, 2011

Blogging, supercharged

Since starting in earnest in February, my blog's readership has grown from practically zero to nearly 4,000 pageviews a month and climbing. 



Not only that, Blogger's stats say I'm getting traffic from all over the world, including the Philippines, Germany, France and Canada. In many ways, this is mind-boggling. Here I am, just little old me with a few hours and a laptop and my words are transcending national boundaries.

But in other ways, it's not enough. Not nearly enough. The top blogs have thousands of people reading them each week. I want that. 

So to inch myself a little closer, I'm working with the wonderful folks over at C*Squared Associates to try to supercharge my blog — that is, to make it more search-engine friendly and bring in more traffic.

C*Squared's Managing Director Cherie Prochaska and I met through our local twins group, Full House Moms and Dads (FHM), and she offered me a number of amazing tips for optimizing my site for search engines. 

I'll get to those in a minute, but I want to first describe my current state of affairs. So far, the vast majority of my traffic has been from my Facebook friends (and their Facebook friends), though I've also been joining blogging networking sites — thus all the badges down there in the right-hand column. 

The biggest boost I've seen so far that wasn't Facebook or FHM was from participating in Circle of Moms' contest for the Top 25 Most Inspiring Families. I'm also getting a fair amount of traffic from Love That Max after asking the author to add me to her blogroll. 

Overall, I think my blog traffic so far is proving the old maxim: "It's not what you know, it's who you know."

Enter Internet marketing tips. Cherie gave me many — including keyword research — that I haven't yet been able to really dig into, but I'll start with a quick summary of things I've been able to do so far in limited time.

1. Google Analytics
I've become a wholly owned subsidiary of Google now, but that's only because they have such cool stuff. Google Analytics is a free service that gives you mountains of data on your traffic, such as where you guys come from, how long you stay and how many pages you look at (don't worry, you're still anonymous). 
I prefer the layout of Blogger's Stats, but I've heard they are much less accurate. Remember how I said people are reading me in the Philippines? I'm sure some are, but more likely the "542" pageviews Blogger says I've gotten are from robots, not actual people. (If you are reading me in the Philippines, throw me a comment!)

2. Keyword research
Keyword research is a big, big project that I haven't had time to really get into right now. But I need to make time, because it is essential for making SEO (search engine optimization) work. The basic premise is this: people enter phrases into search engines to answer a question or find specific information. If you can use the terms searchers use but not many websites use, then you will rank high in their search results. For example, lots of sites (701,000) use the term "cerebral palsy" so I'm probably not going to be able to compete there. However, I know from using Google's Keyword Tool, lots of people (1,300) search for "baby with cerebral palsy," but Google only shows 686 sites that use that in their title tag. Which brings me to...

3. Title tag
Look up at the very top of this window in your browser. See where it says "A stay-at-home mom blogs about her identical twin baby with cerebral palsy"? That's a title tag. Title tags are one of the top things search engines look at to match searches, so it's best to put a keyword-rich description up there. Even though I dislike describing myself as a mom blogger, I have to be realistic and know that if someone is searching for a blog like mine, they'll probably use the term "mom blog." Likewise, in my very cursory keyword research, it looks like lots of people search for "stay-at-home mom blogs," so I'll add that to my description. (This approach would also have me use "childrens with cerebral palsy," since that's a top search term, but I don't think I'll ever bring myself to do that.)

Well, there's a brief primer on the search engine tweaks I've been able to do so far. I have a long, long way to go though, and I'll keep you updated on the process. More SEO tips to come!


Saturday, May 14, 2011

Hey there, Mr. Blue.
Look around, see what you do.
Everybody smiles at you.

Yes, I did call him before the show to ask what he was wearing so we could be twins.
No, I didn't.
But maybe I did.
Or maybe we both work at Target.

Let me start by saying that I had no idea who Josh Blue was before I went to see him on May 1 at the Helium Comedy Club in downtown Portland.

All I knew was that he was a comedian with cerebral palsy and that he may have been on NBC's Last Comic Standing

Turns out not only was he on that reality show, but he won the competition. And he's had a special on Comedy Central ("I went from being special to having one!"), and he's on the U.S. Paralympic soccer team, and he's plugged in to the Hollywood scene, rubbing elbows (might be easier than shaking hands, har, har) with Carlos Mencia, Ellen Degeneres and Dave Chappelle.

And here's why: the dude's hilarious. Have a taste from this bit from a Last Comic Standing performance:

"I was walking downtown and the drunk tank stopped and picked me up!
I was like: 'Wait a minute, fellas, there's a misunderstanding! I'm not drunk, I have cerebral palsy!'
They were like: 'That's a pretty big word for a drunk ass.'
I was in there for seven days!
They were like: 'Damn, buddy, what did you drink?'"

But unlike his Last Comic Standing appearances, much of his humor at the May 1 show wasn't directly about his disability. He joked about his kids and family and his "other" minority status, that of being "African American," since he was born in Cameroon. (I also learn, thanks to Wikipedia, that he started his comedy career while attending the same college as my sister, who is now serving a nine-year sentence in federal prison — no joke.)

One of his key talents is knowing how the audience will react, leading to a very funny follow-up. 

For example, he mentioned, as many starving artists do, that he had CDs and T-shirts in the lobby for sale after the show, along with, he added, original paintings he'd done. He made it sound like a joke, so we laughed. "Oh, fuck you!" he replied, getting more laughter. He was serious. He does artwork. 

And though Blue isn't very seriously affected — he can walk normally and talk relatively normally — he and other comedians with cerebral palsy (like the very funny Zach Anner) have made their difference more approachable to society at-large — including me. Having role models out there like them has, more than anything else, helped me see Malachi's difference as on par with other life challenges that comedians exploit for our mutual amusement, like being black in a white society or fat in a thin society or gay in a straight society. 

After all, as Blue says: "I've seen you (normal) people, and you're not all that."



P.S. By the way, here's what he thinks about being "inspirational."

Jokes.com
Josh Blue - Being Inspirational
comedians.comedycentral.com
JokesJoke of the DayFunny Jokes



Saturday, May 07, 2011

Mom bloggers are raising the very status of motherhood in our society

Working three jobs simultaneously.
© Jessie Kirk Photography


In starting my blog, www.outrageousfortune.net, I've had moments of insecurity. Moments when I thought, do I really want to do this? Am I really going down this path?

This wasn't because I worried I wouldn't have readers or I would embarrass myself by putting my innermost feelings online where anyone could read them and ridicule me for them. I suppose I'm arrogant enough to think that people are interested in my life, and I'm interested enough in telling true stories that I'll risk the occasional rude commenter.

What I really worried about was that people — professional contacts and friends among them — would label me as "just another mommy blogger." The emphasis there is on "mommy," in the way that denotes unprofessionalism, self-indulgence and signing everything with little emoticon hearts. ♥♥

I know what those people think because I used to be one of them: writing about your motherhood and your kids is not "real" work, it's not important and it's not interesting.

The implication is that instead I should be writing for and about other people, people who are doing things. Well, let me tell you, I've been around those people: mayors, police officers and the like. They sure are doing things — good and bad — and people should tell their stories. But we mothers are also doing things — in some ways more important things — and there is no one to tell our stories because no one feels they are stories worth telling.

No one, but us.

But here's the funny thing about "the media." The media is just an echo chamber, amplifying stories that people are talking about everywhere. Now that mom bloggers are out there shouting their own stories into the echo chamber, the reverberations are starting to bounce around. Women like Heather Armstrong of dooce.com are making huge sums of money and attracting massive attention by simply talking about the normal ups and downs of motherhood. Traditional media outlets like the New York Times are hosting blogs like Lisa Belkin's Motherlode, lending credence to the idea that parenting is something worth talking about.

Mom bloggers are glorifying what has long been a decidedly glamour-less and thankless job. In so doing, I think they are doing more than anyone ever has to raise the status of traditionally female roles.

But while mom bloggers are pushing things in the right direction, society at-large still rolls its eyes at "woman's work" — house cleaning, child rearing, cooking. Women who aspire to traditionally male roles — C.E.O.s, doctors, lawyers — are lauded while the rare man who aspires to traditionally female roles — stay-at-home dads — are maligned.

This is the sexism that still exists in our culture. We women are either criticized for being career moms who "neglect" our children or, if we somehow find a form of employment that involves our children or allows us to care for them personally, we are slammed with the "mommy" prefix.

I've heard there is a similar debate going on in the photography community. Photography message boards are filled with angry comments about so-called MWACs (moms with a camera), who are not "real" professional photographers because they got their inspiration from taking photos of their children and parlayed that into a career.

Why is it that if the source of your inspiration is nothing less than the creation of life, your work is considered play and your business is considered a hobby?

While it's true that I make hardly any money at it and I work few and odd hours, I am not "just a mommy blogger." I am a writer. When I was in college, I wrote for my professors; when I was an intern, I wrote for my bosses; when I was a newspaper editor, I wrote for my readers. Now, I am taking some time to write for me.

Just because the subject of my writing now tends to be my children instead of city council meetings doesn't mean I am writing about issues that are not substantial. Indeed, the issues I write about go to the heart of who we are as human beings, how we got here and where we're going.

So on Mother's Day, as you pick up your bouquets and sign your cards and thank mom for all that she's done, go a step further: honor all moms.

Honor motherhood itself.

Monday, May 02, 2011

Events like 9/11 and bin Laden's death show us what's in the hearts of mankind

I'm not proud to admit this, but when I first realized what was on T.V. at 8 a.m. on Sept. 11, 2001, wasn't a movie, I started laughing. Nervous, disbelieving laughter.

Because it seemed so absurd. It seemed so much like scenes we've seen a hundred times in movies: news reporters shocked at what they were reporting, fireballs, carnage everywhere, people fleeing on foot. It was like walking down the street and seeing a Technicolor cartoon character — this sort of thing did not belong in reality.

Once I got ahold of myself, my mood was much more somber. The whole day everything seemed quieter, as if someone had put a half-mute on this bizarre Movie of the Week.

But even with watching the round-the-clock news coverage, I never cried until a few days later when I came upon pictures on the Internet of people grieving around the world, people showing their love and support for Americans in their time of tragedy.


(I made them into this collage, and I apologize to the photographers that their names are on a file that, 10 years later, my computer is unable to read.)

In the wake of Osama bin Laden's recent death, I was startled to find a similar sort of collage on the New York Times website of reader-submitted photos.

The similarities between them are striking, even though in this one, people are mourning, while in the most recent one, people are celebrating.

As before, I didn't feel emotional about bin Laden's death until I saw these photos and it got me to wondering why.

I realized that death and loss and anger and violence aren't the lessons I take away from these events, but the common humanity and love and togetherness we increasingly show on an international scale.

Tragedy is heart-rending: it tears out our hearts and makes us feel that the world will never be the same again. But in so doing it also shows us our hearts and shows us what's in the hearts of our fellows, countrymen and foreigners alike.

I, for one, am pleased to see that the hearts of the vast majority of us are ready to grieve our losses together, celebrate our triumphs together and, above all, live peaceably together.

Sunday, May 01, 2011

My old jet-setting life

I finally finished copying over all my old blog entries from France and Russia and it's been fun to reread them and reminisce about that life.

Since they are waaaay back in the annals of this blog and we are all so now-now-now these days, I thought I'd make a new post to bring your attention to some of the more interesting ones:

Shasta Kearns Moore: World Traveller

French Stereotypes

Vive the French Medical System

Mmm French food

Ah... so, Bush won

Life is happening at this very moment. Right. Now.

The process of learning a language

Day in the life of a French newspaper intern

"Today they make walk even those without feet"

From Paris to Petersburg

Safe like any other country

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