Outrageous Fortune

What 3,000 high school students taught me about the gift of giving

2012-05-29T14:54:00.002-07:00

The moment when I was at the center of 3,000 people standing to say they wanted to help my family taught me a lot.

It taught me that I need to get over my inhibitions about fundraising for Malachi, because it's not about me, it's about him.

It taught me that almost nobody will help if you don't ask, but EVERYONE will help if you do ask.

It taught me the strength in numbers and the immense and universal power of compassion.

It taught me that it is really not about the money. None of those people had to donate a penny to make me feel their charity of spirit and none of them was pledging to buy more than a $1 raffle ticket. It didn't matter. Just knowing that people cared enough about our struggle to stand with us overwhelmed my sense of relief and gratitude.

It taught me the truth behind the statement I saw on a church billboard recently: "For someone to feel the gift of giving, you must receive." What if I had turned my back on the Sparrow Club, and said: "Thanks, but no thanks. We're going to do this on our own"? That moment would have never existed. Those kids would have never felt the power of standing together like that. They never would have seen how profoundly their simple act affected me and how much good they can do for a real person just by donating a buck. They would never have felt how awesome it feels to give if I hadn't been willing to receive.

A fabulous blog called Momestery also made this point recently, saying about its recent fundraiser that it really wasn't about the recipients.

"It’s for all of us to learn how powerful we each are, how much we have to offer even with the little we have. We are all in bits and pieces and when we offer our bits and pieces -MASTERPIECES are created!!!!"

It's really true. It feels good to give. It feels good to lend your arm in someone else's push up the hill. In fact, in the last month, I myself have given modest amounts to several campaigns, which is something I really haven't done in the last couple years. Especially since I found out we were having twins, I've been extremely cautious about money and certainly didn't feel like I had enough extra to give away. But those kids taught me that the act of giving BY ITS VERY NATURE means that you have enough. You simply cannot get that feeling from hoarding, or consuming, or even acquiring more money.

How many times have you heard someone richer than you complaining that they don't have enough? They're not lying — they really feel that way. That right there should make it obvious that it's not about reaching the next payday or the next tier of socioeconomic status.

It's not about what you have. It's about what you willingly give away.

Will you stand with those kids? Do you want to discover how great it feels to be part of our little "masterpiece"? Join our Kickstarter campaign! Or join some other cause! Seriously! I don't care who you give to, just give and revel in the feeling!

Good book, good cause

2012-05-28T19:32:00.000-07:00

My heart is so wrapped up in this announcement that I can feel it beating through my fingertips.

I have been sitting on a ready-to-launch Kickstarter campaign for almost a month now. Contained within it are my two biggest hopes in my entire life — to become a published author and for Malachi to get the help he needs to become as independent as possible. As I have mentioned several times before, I believe the Anat Baniel Method (ABM) is our best chance at the latter, but it is prohibitively expensive.

So here's my crazy, imperfect, pie-in-the-sky, Dear-God-please-let-this-work idea:

I wrote and designed a children's book, which I will sell through Kickstarter, to pay for Malachi's treatments.

Ladies and gentlemen, I am proud to present, for the very first time, for your viewing pleasure, Dark & Light: A love story for babies.

Malachi and JJ love to have it read to them over and over again, but more importantly, I enjoy reading it! The black and white images are simple enough that even a newborn will find it interesting, but the story is complex enough that an adult will enjoy reading it again and again... and again.

Anyway, you can (and should!) read more about it on my just-launched Kickstarter page. For those who haven't heard of Kickstarter, it is a way for creatives and inventors to raise the start-up capital needed to launch a product. In my case, I need to find at least 500 people interested in buying a copy of Dark & Light. If I don't raise at least $5,000, the project is dead and no money or books change hands. If I do, Malachi's future will suddenly brighten considerably.

Let me be absolutely clear on this point: ALL royalties from the sale of this book will go exclusively towards Malachi's medical needs. I have mentioned before how uncomfortable I am at the idea of fundraising but how desperately Malachi needs the money. If this project goes viral or is popular enough to attract the attention of a traditional publishing house, it very well could become a perpetual source of income for a problem that is not going to go away — instead of spending my life fundraising. Do you have any idea how wonderful that would be?

I am ignoring the voices in my head that say this unconventional approach is doomed to failure. I am taking the leap of faith that this will work and that dreams do come true.

You can be a part of my dream. In fact, you kinda have to. I most certainly can't do this alone. Please check out my Kickstarter page and watch the video of the book. If you like it, please buy a copy and then tell a friend.

Combined, our efforts will make a lifetime of difference to one very special little boy.

(You better believe I held my breath and closed my eyes when I pressed publish.)

Where did my babies go and what are these big kids doing here?

2012-05-25T14:47:00.001-07:00

For twelve long years I was the youngest member of my extended family, not to mention six years younger than my siblings.

I got really tired of everyone treating me like a baby. And I really couldn't stand how every single person at every single family reunion would be so shocked to discover that I aged at the same rate as everyone else.

When my cousins were finally born, I vowed to age them in my memory so that I wouldn't be as surprised every time I saw them. (I was mostly successful, but the fact that one is now looking at colleges makes me feel incredibly old.)

For my own kids, I see them every day so you would think it wouldn't be a problem to keep tabs on their aging process. But here's the funny thing about your brain — neurons don't really age. This is why you can feel pretty much the same on the inside at 27 as you do at 72. The only thing that changes neurons is when you pay attention and then click! a new connection in your neural net is formed.

So I admit it's entirely possible that I feel this way because Malachi and JJ just got new haircuts on Monday, but I swear this week they are suddenly and irrevocably not babies anymore.

Overnight they have become interested in activities that I expect will continue on in some form or other for the next 10-16 years — play-fighting, saying "no," giggling at each other's silliness, asking me to turn on our (rarely watched) T.V., coloring, screaming, confidently grabbing my car keys, etc.

JJ (this is what we now call Jaden since we are annoyed at how many Jadens and Jaydens and Jaidens and Aidens and Haydens and Cadens and Bradens there are) in particular does all sorts of things that he didn't do last week. Yesterday, he gave me his first kiss ...and it didn't even matter that his face was covered in peanut butter at the time. He also follows me around going: "Mom, mom, mom." And — joy of all joys — I was treated to his first major temper tantrum... in a grocery store. This was not the whiny crab-apples attitude that may indicate boredom or hunger or sleepiness; they had just ate and slept. This was a full-scale, thrashing-around-in-my-arms, screaming-bloody-murder tantrum.

Why? Because I made him stop hurtling around the store with his tiny shopping cart for a second so I could look at tomatoes. I'm thinking this kid has got some major road rage in his future.

Sorry, buddy, you're not getting my car keys.

Ever.

11 questions (Part Two)

2012-05-22T14:00:00.001-07:00

Yesterday I posted the first part of this 11 Questions meme, in which I told you 11 random things about me. This was one of them:

I also posted 11 questions for 11 blogger friends. Here are those blogger friends in case they have already posted their answers or if you just wanna check them out!

http://trousdellfive.blogspot.com/
http://teamaidan.wordpress.com/
http://our3littlemiracles.blogspot.com/
http://cpdailyliving.com/
http://www.myangelhascerebralpalsy.com/
http://elliestumbo.blogspot.com
http://nisha360.com/
http://azisamazing.blogspot.com
http://laurastanfill.wordpress.com/
http://birdonthestreet.com
http://colofisch.blogspot.com

And finally the event we've all been waiting for! Here's my friend's 11 questions for me and my answers:

1. If you could change one thing about yourself, what would it be and why?

I would be more patient. It seems like a lot of the problems in my life stem from impatience.

2. Name the song that most motivates you and explain.

Oo, so many good ones to choose. I actually made three mixed CDs in my high school years called "Happy" that were just collections of motivating songs, like Bill Withers' "Lovely Day," The Rascals' "It's a Beautiful Morning," and Katrina & The Waves' "Walking on Sunshine." I haven't listened to those CDs in forever though. I'm pretty sure they've all been stolen in various car prowls. Ironically depressing.

Right now, I guess I would say my biggest motivating song is on a kid's CD of They Might Be Giants called "Impossible." For better or worse, I feel like it's my mantra for Malachi overcoming his limitations.

Well, they said I was impossible.
Yes they said I was impossible
and that someone who behaved like me
couldn't be, couldn't be.

But I knew that I was possible,
not completely unbelievable,
and the one they said could never be,
it was me, it was me

3. If you could start a new career easily, what would your dream job be?

A bestselling author. I would really love to write full-time.

4. What kind of car do you drive and how did you choose it?

HA. "Choose."

I drove a 2004 VW Golf TDI until a couple months ago. You can read about its massive pain in my rear end here. Now I'm back to the 1995 Toyota Corolla until it dies. I don't want to think about what will happen then. I think it involves the public transportation system.

5. What did you want to be when you grew up?

HA, again.

I wanted to be a physical therapist. Can you believe it? I guess I got my wish, huh? Even Malachi's PTs say I should do this for a living.

But when I was little, I didn't actually know what a physical therapist did. At some point, I told my brother, who is six years older than me, that I wanted to be a therapist, probably because I wanted to help people, and he said "Oh, no, no, you should be a physical therapist because they make more money." I thought that sounded good and basically figured a physical therapist was a therapist that helped people (psychologically) through movement.

Funny how life has all these little ironies and coincidences.

Anyway, somebody eventually told me that physical therapy had to do with sports and I was out. Then I decided I wanted to be an author and I've wanted to write ever since.

6. What is your favorite film from the past five years?

Hmm... I can't use my pat answer of Kenneth Branagh's "Much Ado About Nothing," since that was much longer ago. Was WALL-E less than five years ago? I really liked that movie. Everything about it was great.

7. Coke or Pepsi (or “other”)?

I've inherited a Diet Coke affiliation. My mom hardly ever bought soda and I tend to only drink it when I'm out, but my husband's father drinks gallons of it and so would my husband if I kept it in the house. Every once in a while I'll buy a 12-pack of Caffeine-free Diet Coke. I usually get one before it's gone.

8. What’s the most ambitious item on your bucket list?

Probably visit India. I traveled a lot in college and younger, so I don't consider this very ambitious, but the more I get tied down with family and financial responsibilities I realize it's much further out of reach than I gave it credit for.

9. What is your favorite quote?

Well, that's pretty obvious; it's right up there in my banner:

"Whether tis nobler in the mind to suffer the slings and arrows of outrageous fortune or, by opposing, end them."

I really find I go back to it again and again through this journey with CP. Is it better to "fight" the CP in hopes of "winning" or is it better to just accept it and move on even if that means less functionality in the long-term?

10. Morning person or night owl?

Night owl. For sure.

11. What is the most difficult thing you’ve ever faced or done?

Sacrificing my career and, well, everything and concentrating my whole being on keeping two babies inside me passed the risky 28-week mark. Succeeding in getting them to 30 weeks and having doctors reveal a month later that despite my "success," one has completely amorphous, undefinable brain damage and they have no idea why, so therefore it could be my fault.

I've written a blog about it. You should check it out. ;)

11 questions (Part One)

2012-05-21T21:46:00.001-07:00

OK, so yeah, this is nothing more than a glorified chain letter, but it's fun and I actually spent a lot of thought and time on it, so deal with it.

A million years ago, Andi from Bringing the Sunshine tagged me in an 11 Questions post. The meme goes that you say 11 random things about yourself, answer 11 questions, ask 11 questions and then tag 11 other bloggers to answer those questions. To me, that seems like an extraordinary number of requirements, which is why it took me so long to respond! Somebody should change it to the "3 Questions"!

Like Andi, I'll break mine into two parts. Today I’ll post my 11 Random Things, tag a few of my favorite bloggers and my 11 questions for them. Tomorrow I’ll answer Andi's questions for me. First...

The Rules

1) Post these rules.
2) Post 11 random things about yourself.
3) Answer the questions set for you in the post of those who tagged you.
4) Create 11 new questions for the people you tag to answer.
5) Go to their blog (or email them or tweet them) and tell the people you tagged that you’ve tagged them.
6) No stuff in the tagging section about “you are tagged if you are reading this.” You legitimately have to tag 11 people.

Now...

11 Random Things:

1. I have eight trees on my property, but only one of them is over 10 feet tall.

2. I made my husband return my engagement ring and buy me one that was smaller.

3. I went to a Japanese-immersion elementary and middle school.

4. My favorite "bachelorette" meal was a loaf of French bread, some exotic cheeses, too much wine and just enough dark chocolate.

5. I dislike tropical fruit of all sorts. Yes, that includes pineapple.

6. I have no full siblings, but was raised the youngest of a half-sister and a half-brother who are the same age (sort of like twins, hmm...) but not blood-related to each other.

7. As of this writing, I have 38 unread messages in my inbox.

8. My skin never tans. I burn, I gain a few freckles, and then I go back to pure white again.

9. My favorite donuts are Bavarian creme, just in case you want to get me some.

10. I used to be horse-crazy and owned a Morgan (that's a horse breed in case you don't know) named Darius.

11. This:

11 Bloggers: You've Been Tagged!*

http://trousdellfive.blogspot.com/
http://teamaidan.wordpress.com/
http://our3littlemiracles.blogspot.com/
http://cpdailyliving.com/
http://www.myangelhascerebralpalsy.com/
http://elliestumbo.blogspot.com
http://nisha360.com/
http://azisamazing.blogspot.com
http://laurastanfill.wordpress.com/ <-- (the only one on this list not-CP-related. Hmm... I think I need to branch out a little more.)
http://birdonthestreet.com
http://colofisch.blogspot.com

My 11 Questions for you!

1. What products do you have in your shower?

2. What one frivolous (not essential to survival) thing would you want with you on a desert island?

3. What's your favorite throw-together meal?

4. If you could only visit one restaurant for the rest of your life, which would it be?

5. What color is your favorite pair of shoes?

6. Dogs or cats? (Or, "other"?)

7. Describe a moment, however brief, in the past week when you felt joyful.

8. You have an entire day off from responsibilities, but you can't spend any money. What does your free dream day look like?

9. If you had $1 million to give to charity, what cause would you give it to?

10. What is a picture that you wish you had? Either a moment in time that wasn't captured, a picture of a person passed or a place in the world? Anything you would like an image of.

11. Would you rather have a blanket made of the softest material imaginable with a stone bed or a rough, scratchy blanket with a gloriously soft and cushy bed?

Check back tomorrow for my answers to Andi's questions!

* If anyone out there is upset that they didn't get tagged, feel free to pretend like I tagged you and answer these questions. I definitely want to hear your answers. I literally just sort of went down my RSS feed to choose bloggers, so I'm sure I'm forgetting someone.

Dear Glee, please do for disabled kids what you've done for gay kids

2012-05-14T14:34:00.000-07:00

Every television show has its point to make. Some make theirs better than others.

FOX's Glee has done a particularly good job of not only having engaging characters, story lines and music numbers, but having a message about what life is like for many gay kids and what it could be like. I have very much enjoyed the exchanges between Kurt, a flamboyantly gay kid, and his blue-collar father. The conversations between them have been refreshingly healthy and honest. Kurt's father can be ignorant and Kurt can be a little too self-righteous but they clearly both respect and love each other deeply.

NPR recently noted that Glee, along with Will & Grace, has had a significant impact on American attitudes towards homosexuality and gay rights issues. American families see an example of a sympathetic and genuine gay character and realize their stereotypes and demonizations might be flawed.

So I applaud Glee for its work in opening minds in this area and I hardly want them to stop. But I do think it's time for them to focus a little more on a different character and his unique struggles in high school.

This is Artie Abrams, a guitar player and background member of the Glee cast. He is played by former boy band member, Kevin McHale. Unlike other bloggers, I'm not going to opine the fact that McHale himself is able-bodied. Yes, they did miss a chance to give a disabled actor a good role — and it's not like visibly disabled actors can play able-bodied characters! — but an actor's fundamental job is to portray characteristics, not possess them himself. I wouldn't expect only gay actors to play gay characters or teenagers to play high-school-aged characters.

The focus should be on the writing and it is here that the otherwise remarkably adept Glee creators have fallen down. Artie is rarely a showcased in an episode, but when he is it is on episodes like "Dream On," in which he dreams of dancing. The entire episode is predicated on Artie feeling sad that he can't walk and ends with an insinuation that he will lose his girl to a boy with more physical prowess (which he eventually does). Instead of taking the opportunity to create a nuanced narrative — as they do with Kurt — showing how his difference is at once very difficult but also a key and inherently lovable part of his identity, Glee goes with a hopeless "cure" narrative.

They even include a a dream sequence in which Artie is able-bodied instead of using the opportunity to highlight a very cool sport called wheelchair dancing. Here's a taste:

I believe it is possible for shows like Glee to normalize disability. Friday Night Lights, for example, did a MUCH better job of portraying the complexities of life with a wheelchair. For one, they showed the character OUT of his wheelchair, showing how it is simply a tool he uses and not part of his personality. Unless I'm mistaken, Artie has never been seen out of his wheelchair except in that dream sequence.

But, you might say, why are you picking on Glee? There are tons of other shows on TV.

True. The trouble is that Artie is one of only five scripted main characters with disabilities on network television. At least Glee is evolved enough to even represent people* with visible disabilities, who account for 12 percent of our nation's population, but less than one percent of television characters.

That statistic, by the way, is originally from a study conducted by GLAAD, a gay rights group.

See, Glee writers? Even GLAAD knows we gotta stick together; treat everyone as good enough just as they are.

As the disability rights campaign I AM PWD (Inclusion in the Arts & Media of People with Disabilities) says:

"In the same way that a more accurate representation of the American Scene has led to changes in attitudes toward LGBT people, the inclusion of people with disabilities in popular entertainment has the potential to make a difference."

* Glee also has two minor characters with Down syndrome and I don't think they've done a very good job representing their complexities either, but I decided not to get into it here.

Happy Tears

2012-05-11T18:19:00.000-07:00

I held it together pretty well until he asked them to stand.

We were at David Douglas High School, a large local high school in our neighborhood. We had to wait until the end of the assembly, so it was all I could do to keep my kids entertained while an impressive array of music and athletic awards were announced. Then it was our time. I hoped I looked appropriately grateful, appropriately needy, appropriately whatever.

The coach walked to the center of the gym, packed to the rafters with all 3,000 students, and I followed with my double stroller and matching twins who don't quite match.

He talked about the Sparrow Club and how Malachi has cerebral palsy and how they're raising money for our medical costs and how ticket-holders can win prizes, etc., etc. Then he did something I was not prepared for.

He said: "Anyone in this room who would like to help out this family, I'd like you to do one thing right now. I'd like you to stand up."

Group by group, in rapid succession, they all did. They all did. I clutched my child in the middle of a gymnasium with 3,000 people — almost all teenagers, often stereotyped as self-absorbed — saying with their entire bodies that they wanted to help.

I was so overwhelmed, I regret to say I couldn't even really look at them.

But for the first time in a very long time, I didn't feel like a victim. I didn't feel lost and out of control. For the first time in a very long time, I cried tears of joy and gratitude and relief. I marveled at the exquisite beauty and immense power of human compassion. I marveled that so many people from so many cultures, political persuasions and backgrounds could all agree on one thing: Yes, I want to help you.

They know nothing about us. They met us literally minutes ago. But they want to help simply because someone had the temerity to ask.

As we left the building, the coach apologized. He said he hadn't meant to make me sad. It took me a minute to figure out what he meant.

"Oh, no," I said, thinking of all the times I'd cried since Malachi's diagnosis, "these are happy tears. There haven't been many happy tears these last two years."

And then I said: "Thank you."

Thank you, David Douglas students. Thank you for allowing me to cry happy tears.

ONE-HUNDRED-THOUSAND PAGEVIEWS!

2012-05-08T20:43:00.000-07:00

WOW!!!

I remember back when I first started this blog, looking with envy at a ticker that read 50,000 pageviews. Man, I thought, that will take forever. But just a year later, here my ticker is with twice that!

Thank you from the bottom of my heart (where all the sincere stuff is, not like that top of the heart nonsense) to everyone who clicked, shared, followed and blogrolled our way to this exciting milestone. I couldn't have done it without you!

(Well, I guess I could have, but it would have been really boring sitting there and pressing reload 100,000 times. This way is much better.)

Let's see how long it takes us to get to 200,000! If you read regularly, become a follower! If you have a blog, put it on your blogroll! If you see something interesting, share it!

Thanks again!

Our therapy trip to California

2012-05-06T22:11:00.001-07:00

I'm happy to report the feeling of providence continued on our trip to the Anat Baniel Method Center in San Rafael, California. Everything went as well as could be expected, the weather was beautiful and Malachi made some important gains.

The trip even started with a pretty amazing coincidence.

At the Portland airport.

I've never flown Southwest before so I didn't know that they don't have assigned seating. I showed up a little late to board and was dreading finding an aisle seat next to people who would roll their eyes at the sight of a baby. But the first aisle seat I found was next to none other than a woman flying alone with a baby and a little girl.

This is perfect! We'll be the baby row and we won't care that the other baby is crying because we're moms and we got over that a long time ago.

So I settled in, trying to find Malachi's bottle for take-off and chatting with the other mom. But then a stewardess showed up and said I had to move because we couldn't have five people (two lap babies) in a row.

Drat. I guess I have to ruin somebody's day.

The stewardess found an empty middle seat, asked the people there if they would mind if I sat there. They didn't. I sat down and as I was still trying to find that damn bottle, the woman sitting next to me said: "Oh, hi, Shasta."

Whaaaaat?

Turns out the stewardess sat me next to a family friend! A very warm person and a retired pediatric physical therapist to boot! We had a wonderful time chatting about our trip and ABM while Malachi drank his bottle and then promptly fell asleep for the entire plane ride!

Exactly the expression one should have
getting into a shiny black Town Car with
a private driver (remarkably,
the cheapest option available).

When we got to the airport, baggage claim was a breeze with my friend helping me and my driver found me before I even had a chance to look for him. He led us to a very posh Lincoln Town Car with chilled bottled water. Malachi was in a very cheerful mood and the trip to Vacaville passed uneventfully.

Once we got settled, we headed to the grocery store where I found a very cool shopping cart fitted with a bucket seat that was perfect for Malachi. (Maybe other places have these, but I haven't needed to look for them before since I'm always carting around a double stroller.)

Malachi had an incredibly fun time pointing out the aisle numbers every time we passed under a sign. He and Jaden know several numbers and letters already — I know, right? they're freaking geniuses — including 1, 2, 3, 6, 8, A, E, O and S. Eight was Malachi's particular favorite this time around and he got very good at saying it — "aaaait!"

We also had a great time on our various adventures in between lessons at the center. Either while Malachi was napping or before bed we visited:

Golden Gate State Park

Jelly Belly Factory

CAAANDY!!!

Bumper-to-bumper traffic in the middle of NOWHERE.
Really, California, really?

The only consistent downside — aside from traffic, see above — was that I had to do without a feeding chair on this trip. Instead, I brought in his carseat and propped him up with towels, but with his newfound mobility he would often try to launch himself out of the chair in pursuit of wayward Cheerios. Which brings me to...

...what can he do now???

First off, he's babbling a lot more and can say about a million new words. I should have been writing them down, but honestly it's probably too many to count. He tends to say just the end of a word and over-emphasize the vowel sound — in fact sometimes it seems like he will start with a vowel sound instead of a consonant, such as "ama" for "mama." I can tell that it's not quite the same as how Jaden speaks, but I would say he's caught up in the number of words he can say. The other night while reading a book with lots of pictures of various objects, he pointed to several and spontaneously said their names.

As far as his body, the primary difference I see in Malachi is that his body is waaaay looser. I didn't even realize he was spastic until now when I can feel a dramatic difference in how much floppier he is. I can pick up his leg and move it any which way or place it under his bum in a pretzel and it can stay there instead of springing back. The change in his muscle tone alone seems like a research study waiting to happen. Any doctor would be able to feel the difference from last week to today.

Not the most illuminating picture, I know.
It was hard to take pictures and videos of the sessions because Malachi would stop paying attention to the lesson and immediately start whining for my phone if he saw it.

The other changes are less dramatic, but, as they say, any change means change is possible and can be built upon, so it's exciting nonetheless. In fact, I think I'm going through a similar process that Malachi is — learning how to make finer and finer distinctions about what he can do. Instead of only noticing and being happy with the giant milestones — rolling over, etc. — I can distinguish how much more fluidly he moves and how the quality of his coordination is more graceful.

I think of it like looking at a person who is riding a horse. If you're like most people, you can't tell by looking at someone sitting on a horse if they are an experienced rider or not, but since I loved horseback riding in my youth and paid an extreme amount of attention to it, I very definitely can. On the other hand, I certainly couldn't tell by looking at a golfer whether they have a good golf stance or not because I know nothing about golf. Seeing the efficacy of ABM is therefore as much about my ability to notice as it is about Malachi's ability to change.

Sitting much straighter but look at those legs!!
Completely bent to the side and laying on the
table as if it were no big deal!

That said, I feel like I can see a lot more changes in him than when we went in October. For one, Malachi seems to have much more fine motor control in his left hand. He can sign the word for "different" with both pointer fingers instead of just one beating against his other fist. It also seems like he is able to put his knees out to the side in crawling a bit more and once in a lesson he even pushed with his knees in crawling and lifted his butt. In (supported) sitting, he has a noticeable lumbar curve — his back was flat as a board before. Also, his belly is rounder, (consequently his breathing is deeper and his voice louder) and he doesn't need to contract his tummy as much when he lifts his legs, sometimes not at all, and consequently he is kicking more while sitting. He can also use his arms without contracting his legs and feet nearly as much as before. During the last day of lessons, he also started spontaneously putting his hand down on the table when he felt he was losing his balance instead of tightening up and pulling his arms in.

These are all fabulous changes and I'm really excited about them. Are they miraculous? Is Malachi able to move radically differently? Is he going to crawl and sit up by himself tomorrow? No, no, and no. But they are enough that I think this trip has been a resounding success and we have decided to scour every rock, tree and bush for money to continue. They recommend we throw everything we can at it for the next three months. I have a lot of worries about how we're going to afford that and I dislike (to put it lightly) being put in the position of having to sacrifice so much, but I've decided it's worth it to put this method to the test for us once and for all.

A tired Mr. Crazy Hair McGee on the flight home.

BTW, a blogging buddy recently posted an explanation of ABM on her blog and I recommend you check it out if you'd like to learn more about it from a parent's perspective. I'm planning on doing another post about it soon — an expanded and more refined version of the one I did before or this other one I did before — but it's so nice when someone does some heavy lifting for you once in a while! :)

Who is Malachi?

2012-05-03T21:39:00.001-07:00

I haven't had nearly as much free time down here in California as I'd hoped, but I did find some time to write a long-overdue page devoted to cerebral palsy, Malachi and Malachi's cerebral palsy so that new readers can find an easy introduction to all this madness.

Check it out here. It will also be enshrined in the sidebar under my profile until the end of time in case you need to find it again.

Or, maybe you just want to look at a ridiculously adorable picture. No problem. I gotcha covered there too:

Jessie Kirk Photography

On our way, the sequel

2012-04-29T08:56:00.000-07:00

By this time tomorrow, Malachi and I will be back in California for a therapy trip to the Anat Baniel Method Center. I truly didn't think we would ever do that again after last time, but through generous support from the Sparrow Club at David Douglas High School, we were able to take the chance.

I am more convinced than ever of the efficacy of the Anat Baniel Method and hope that I can make the improvements in Malachi stick a little better this time. It also seems like the universe is arranging itself to send me on this trip. It sounds crazy to me to write that, since none of this would even be necessary if the Powers That Be had prevented Malachi's brain injury in the first place, but it seems as though providence has been providing for us lately and urging us to take this trip. We only decided to do it two weeks ago, and already we were able to get appointments; out of the blue someone offered a free roundtrip airline ticket down there; and I even found the perfect carry-on bag in our garage today that my husband said a stranger simply gave him one day. Oh and get this, the cheap car service I had to order to get us to where we are staying wasn't available but the guy arranged a limo service to pick us up for practically the same price. (It'll be like when Sex and The City went to California, only I'll look like a pack animal with a baby strapped to my chest and all of our luggage trailing behind me.)

Lots of weird little details like that that seem to just be coming together. Makes me hopeful.

It will just be the two of us, Malachi and me. I'm excited (only one baby?) and nervous (only one parent?). I'll also miss Jaden and Matt. I bet I'll be shocked at how much Jaden will have grown.

So, in the interest of science (SCIENCE!), I took this "before" video of Malachi on the floor. As much as I talk about Malachi's disability, I think regular readers may have noticed how I almost always post pictures and videos showing him as normal as possible. But he's definitely not. And taking this video left me falling again. I try so hard to look at how far he has come, how bright and cute he is — all the positives and all the hope for the future. But sometimes it hits me so hard. My baby is almost two years old. He can't walk. He can't sit. Dammit, he can't really even roll over.

I really thought he would be doing more by now.

Hopefully soon I can say that he does.

Malachi at 21 months from Shasta Kearns Moore on Vimeo.

This post is part of the CP Connection, a monthly blog party for all cerebral palsy-related blogs! Click the above graphic to read more or participate in this blog party!

Wordless Wednesday: Science museum. With twins. Alone.

2012-04-25T09:45:00.000-07:00

I thought it was high time I record the insanity that is taking two little boys to the local interactive science museum, especially when one can't move himself around. My solution? Strap a leash on one, strap one to my chest and keep only essentials in my pockets, no purses or jackets.

It's still pretty nuts, since Jaden runs every which way, but at least not having to hold and position Malachi allows him to interact with the exhibits a bit more than in a stroller.

They absolutely love elevators. All elevators.
They have a huge fit whenever we have to stop riding the elevator.

New Lego exhibit. Malachi likes the headless dude.

Yes! Back to the elevator!

Look at how well Malachi is using his pointer finger!

Our Wedding, Our Love and the Soundtrack of Our Life

2012-04-21T20:01:00.000-07:00

I've been thinking a lot about my wedding lately. Family friends are getting married this weekend, and wedding commercials are gearing up. MSNBC also recently told the sad-but-beautiful story of two 24-year-olds who married in three days when it was discovered the groom had mere weeks to live.

But, most of all, I recently received a copy of the CD I made as a favor for everyone at our wedding. (Both of our originals were stolen.)

Listening to that CD is like watching a favorite old movie you've seen a hundred times. Only the scenes that flashed before me were from my own life: the moment I fell in love with him, the time we spent an hour sobbing in the airport, the comfortable reassurance I always felt (feel) in his arms.

Our early courtship was a long and painful process. We had MANY break-ups and reunions in the tumult of our youth. For three years, he lived in Japan, and then I moved to France. No relationship could withstand those pressures.

Somehow, ours did. Not without a few broken hearts and broken promises, but it did.

I made the CD because I wanted to invite our friends and family into the soundtrack of our "movie." The songs came from different genres and had different messages but together they painted the complex picture of a relationship — one that wasn't easy or picture-perfect, but one that survived against the odds.

So when I slip in our CD, I'm transported back to the emotions I felt as we navigated our path to true love.

These songs tell our story remarkably well — and in more or less chronological order — so I'll shut up now and let them. I'm sure many of these songs are ones you've heard before, but I can guarantee at least one of them you haven't. If you want to know what any of them sound like, clicking on the link will take you to the YouTube video.

Walking on Sunshine, by Katrina and the Waves

Kiss Me, by Sixpence None the Richer

Your Body is a Wonderland, by John Mayer

Foolish Games, by Jewel

Do What You Have to Do, by Sarah McLachlan

Come Away With Me, by Norah Jones

Yes, my husband had a horse-drawn carriage take me to the reception site.
I'M AN EFFING PRINCESS!!!

When You Come Back Down, by Nickel Creek

Walk Away, by Ben Harper

So This is Goodbye, by Stina Nordenstam

Thinking About You, by Norah Jones

Ma Cherie Amour, by Stevie Wonder

I have to include a shout out to Divine Cupcakes,
not because it's my brother's cupcakery,
but because they are beautiful and DELICIOUS!!

Feeling Good, by Nina Simone (I highly recommend this video.)

Unforgettable, by Nat and Natalie Cole

What If I'm Right?, by Sandi Thom

Holding You, by Gretchen Wilson

Take Me the Way I Am, by Ingrid Michaelson

The Promise, by Tracy Chapman (This is the song I walked down the aisle to.)

I Wanna Get Married, by Nellie Mckay (A retro tongue-in-cheek lounge number that some may have felt was an odd choice for our First Dance. I loved how its vague sarcasm celebrated the longing I think most women — no matter how feminist and career-driven — feel for domestic life.)

Love Prevails, by The SGC Project (This was actually from an album from my mom's church with lead vocals by the beautiful, talented and now-semi-famous Halie Loren.)

My First, My Last, My Everything, by Barry White (Of course!)

In addition to the CD, we also had a board that we decorated with pictures and parts of
love letters from over our very long courtship. In this one (from almost 10 years ago!),
Matt says he'll wait for me. Awwww....

All pictures are from my good friend at Jaime Valdez Photography!

My responses to 3 Wacky Questions for Indie Authors

2012-04-20T17:15:00.000-07:00

Author Milda Harris posted an interview of me today! This isn't your typical interview — like this one — but involved some pretty creative questions.

Head over there to find out what color I would paint the sky, who I would want to meet if I could meet anyone in history and what would make me say:

"That's horrible! I need to rectify this situation immediately!"

Check it out!

http://www.writergirlinla.com/2012/04/shasta-kearns-moore-3-wacky-questions.html

Wordless Wednesday: Self-portraits

2012-04-18T09:53:00.000-07:00

Sure, they can't talk, but they've already figured out the iPhone. They have their priorities after all.

#IAmDisabled, isn't everybody?

2012-04-15T13:06:00.000-07:00

A blogging friend of mine who writes Adventures of Me has recently come up with a disability awareness campaign called #IAmDisabled.

The more I think about it, the more I think it's a great idea. The premise is simple. Take a hard look in the mirror and answer this question: What is something you can't do that you wish you could do? That's your disability. You are disabled.

To me, it is most powerful and effective if you can come up with something that other humans can do, although you can read here that the responses vary widely.

For me, I said that I would like to be able to speak more clearly so that my husband and others could understand me more of the time. I don't have a speech impediment, but I can mumble a lot. In fact, for New Year's I resolved to work on my speech, but ultimately failed. It did, however, give me a lot of insight into just how hard it is for someone like Malachi to change his habits even when it would benefit him and be easier in the longterm.

That's why I like Nisha's idea: it shows that disability is a spectrum and we are ALL on it to varying degrees. The construct I was given in school — these people are fundamentally different, so they need to stay over here, away from the rest of us — is not only untrue, it's not useful. By identifying the qualities in ourselves that are lacking, we demystify and, more importantly, de-stigmatize the world of disability.

So what is something you can't do that you wish you could? Leave it in the comments below and/or tweet @Nisha360 and be sure to include #IAmDisabled!

Wordless Wednesday: Where do all the left shoes go?

2012-04-11T09:33:00.000-07:00

One can only rise from ashes

2012-04-09T12:36:00.000-07:00

I'm not a religious person. Spiritual, yes, but not religious.

But I wanted to share something that's been rattling around in my head since yesterday, Easter.

In an NPR story I read, author Anne Lamont introduced the concept of an "Easter people living in a Good Friday world." She doesn't really explain what this means. Perhaps to Christians it's obvious, but I'm going to tell you what I think it means.

Phoenixes can only be reborn from the ashes. Jesus could only be resurrected after his crucifixion. Good can only come after bad.

Maybe this is true. I hope it's true. I hope this for the family who is grieving the second loss of a child. I hope this for the family whose ailing daughter received a kidney from a father who, as a result of the complications, is now hospitalized with brain damage and kidney problems. I hope this for my family.

I have to believe that these people are not simply going to suffer tragedy after tragedy. I have to believe that we can rise from the ashes. I've seen it done before, and I know it can happen again. It's our turn, now.

Do you hear me, God? It's our turn.

Fundraising — bleh

2012-04-05T19:00:00.000-07:00

I am being dragged kicking and screaming toward the conclusion that I have to ask my friends for money for my son. Not like the awesome-but-rather-underfunded $1,000 fundraiser I did last year. Like, $$-per-plate, silent auction, we-need-some-serious-cash fundraiser*.

I hate this idea. For several reasons. First, because the insurance company and the state programs — to whom you and I collectively pay tons of money in order to help out kids like Malachi — really ought to cover our preferred, and scientifically based, methodology. We truly believe it's better than the physical therapy they offer — and even our PTs agree — but it's a long, hard slog to get the peer-reviewed research needed to back that up. We are still fighting that fight, but while we jump through hoops, Malachi cannot go without it.

Second, it's going to be a ton of work and this is exactly what I feared my life would become — all about Malachi and his extraordinary needs. It's been two years now since I've worked and though I'm looking for jobs, I'm painfully aware of how few employers out there will realize that these years are those in which I've acquired a lot of personal growth, not to mention marketable skills. A new study out shows that mothers of children with special needs make an average of HALF what their counterparts with healthy children do. That despite the fact that special needs children have expensive needs. Judging by recent court awards, special needs children cost $3 million extra to raise, not to mention lost productivity when they become adults.

Third, I've always been very conservative with money and have managed to keep my family's head above water over the past two years with only one income and some support from parental figures. I hate that I can't "make it" on my own anymore, having depleted our savings and trimmed every expense I can think of.

But, fourth, I also feel like if I ask friends for donations, my budget is suddenly under public scrutiny. If I post on Facebook that I'm enjoying a relaxing weekend at a cabin in a resort area of the state, will I need to stipulate that the cabin is a friend's and through carpooling and food sharing, the entire weekend cost me just $30? If Matt and I manage to finally take a vacation somewhere sunny, will people think we took their money and spent it on ourselves? What about when our car finally kicks the bucket and we're forced to buy a new one? Will we ever get to have nice things again without feeling guilty or beholden?

So while I'm sorting through all these emotional issues, the fact remains that I need thousands of dollars for Malachi's medical expenses. This will probably mean a fundraiser at some point this summer and I'll need all the help I can get.

Anyone out there with advice or a willingness to take on a piece of our fundraiser is more than welcome to contact me!

* I should give a shout-out here to the kids at David Douglas High School, who have adopted Malachi as their Sparrow. Sparrow Clubs are an awesome program linking socially conscious high schoolers with needy kids in their communities. The high school is raising some unspecified amount money for him, we'll find out how much in mid-May, but we have had little to no involvement in the process. This is wonderful from the point of view of my schedule but it's also why I nearly forgot to mention them!

Wordless Wednesday: Jaden, the Wonder Boy

2012-04-04T09:43:00.000-07:00

Welcome to the Amazing Adventures of Jaden, the Wonder Boy! Every mom's favorite little helper!

He gardens!

He helps prop up Malachi with pillows!

He sweeps!

... and, well, he is still a boy!

Wordless Wednesday: A boy and his truck

2012-03-28T09:57:00.000-07:00

Look who can stand at a table all by himself for several minutes without falling down!

Brrrrrrr!

He loves wheels for some reason.

REVIEW: Kids Beyond Limits by Anat Baniel

2012-03-27T21:41:00.000-07:00

Note: The following review assumes you've heard of the Anat Baniel Method (ABM). It is the primary methodology we use with Malachi and we've found it to be very compelling, though we are not without criticisms. If you follow the linked text above, you can read everything I've written on the subject.

So, I had very much hoped that I would have finished reading Anat Baniel's new book Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs by today, its release date, but I have to admit that I haven't. I've read most of it and skimmed through the rest.

I received an advance copy to review about a month ago and the bottom line is that I absolutely love it. But even though the book is short, only 288 pages, it has taken me an incredibly long time to read it. That's because it's just packed with things that, well, kinda blow my mind. I've found I have to put the book down at least every chapter to think about how I can integrate its philosophy into my life and the way I deal with Malachi. And I definitely can't read it before bed or I will be up all night thinking about it.

So it's been slow going. But I know for a fact I will read it through again as soon as I finish. And I will make everyone who interacts with Malachi read it. And, if I can, all of you people read it.

If you happen to have read Anat Baniel's first book, Move into Life: The Nine Essentials for Lifelong Vitality, you already know her so-called Nine Essentials: Movement with Attention, The Learning Switch, Subtlety, Variation, Slow, Enthusiasm, Flexible Goals, Imagination and Awareness. These are also the basis of her new book, but I found Kids Beyond Limits to have much more practical advice, useful anecdotes and personal insights. It also seems to reference many more scientific studies than I recall from Move Into Life, and has extensive footnotes. For anyone who enjoyed Norman Doidge's The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, I would consider this a practical guide to that inspiring round-up of neuroplasticity success stories.

What I really loved was that Baniel describes in detail what is going through her mind as she treats kids with special needs and it helped me realize that more than anything the Anat Baniel Method is about how you treat kids with special needs rather than what particular movements you do. Therefore, I really consider this a book that anyone and everyone who interacts with special needs kids should read.

For others, the titles of the Nine Essentials alone might be enough to help them remember what to do in their daily interactions with kids. But for me, I've found more success with pulling out some key phrases that I repeat to myself as I interact with Malachi. Here are a few:

What is obvious to me is not obvious to him. Parents know instinctually that this is true in certain cases. For example, just about everyone would know to keep a newly crawling baby away from ledges. Even though the consequences of gravity are obvious to everyone else, the baby has not yet learned this. Baniel takes this concept a step further and shows how kids — all kids, but particularly those with special needs — are not aware of things that we consider to be obvious and this is the source of much of their dysfunction. For my son, this means that even though he arches his back all the time, he might not actually be aware that that is what he is doing and that it prevents him from accomplishing things like rolling over. So, I've started to play a game with him called "arch, flat, curl" where I playfully point out what he's doing and even accentuate it a little bit with my hands. This has very quickly taught him the difference between these states and he can now curl over to lay on his side pretty much whenever he wants to.

How can I "differentiate around the edges"? Baniel uses the phrase "differentiate around the edges" a lot and by it she means that you start with something the child can already do well and then see how you can build on that — slowly and incrementally. I'm finding this to be easiest to apply in my verbalizations. I have always babbled along with Malachi and Jaden, but now I can add in a slightly different vowel sound or play with my tongue a little more and see if they follow along. Very often, they do, and Malachi has even begun to push his tongue out the left side of his mouth, which he has never done before.

Sloooooow. OK, so this is just the title of one of the Nine Essentials, but it's very useful and easy if you can remember to do it. Just slow down. I take a few beats longer to turn the page, or wait a little longer after pointing to an object they know the word for or take 10 seconds to pick him up from the floor instead of five. What's the rush?

Require less evidence to be happy for his growth. Yes, I did just see Malachi's leg move in a way I haven't before. It's OK to be happy about that. I don't need to have him repeat it immediately to prove it to me and I don't need to keep those happy feelings in a penalty box in my head just in case he never makes that movement again. Neither do I need to wait to be happy until I see him incorporate that leg movement into rolling over. I saw him do it with my own two eyes and he's never done it before. That's enough.

Concentrate more on the process and less on the outcome. This one is really hard for me. Like, really, really, really hard. I'm constantly fighting back voices that say: "If there are no outcomes, what's the point?" But I feel like there is something very valuable there so I'm going to keep working at it. As Anat herself says, if she were required to directly "make" a child perform a certain way, she would have no idea how to do it. She just concentrates on improving their quality of movement and the rest takes care of itself.

Wonder what he'll do next. This one has been great and I've been really surprised and delighted at the results. Whenever I catch myself about to "help" him, I still my mind for a second and wonder, with rapt attention, what he'll do next. More often than not he does something useful or unexpected. For example, today, he was trying to roll onto his side to get a small toy car. He was straining and tensing his legs so much that he would never get fully onto his side. Normally, I would pick up his top leg and push it over towards where he wanted to go. This time I just watched for a second. Then, very gently, I poked his hip and wondered what would happen. Almost immediately, he brought both of his legs up and curled his body to get much closer to the toy car. I didn't even realize for a second or two that that was my desired outcome because I was so intent on simply observing. And the best part was that it came from him which — obviously, but it wasn't really obvious to me before! — is where all of his movements are ever going to come from.

So with all of these lessons and many more, is Malachi's progressing? Without a doubt, yes. In the month since I've gotten this book, Malachi has learned to roll onto his tummy and belly crawl a bit and he is also showing a lot more variety in movement and enjoyment in moving. I'm certain that this $10 book is more useful to me and Malachi than our $3,000+ trip to the Anat Baniel Method Center in San Rafael or at least that if we'd had it we would have gotten a whole lot more bang for our buck.

I would be lying if I said it's not difficult. I struggle with it everyday and still get overly frustrated with myself — and with him. I struggle with how to be discerning without being judgmental and I struggle with how I'm supposed to help him recognize useful actions without imposing on his creativity. There are also several things in the book that make me realize that many of my well-intentioned attitudes and actions towards Malachi (a big one being asking him to repeat his success) have had the complete opposite effect than the one I intended.

But the bottom line is that this approach makes me happier and by extension Malachi. The fact that it also works is almost icing on the cake.

Almost.

The Car Gods Hate Us

2012-03-25T05:21:00.000-07:00

Check engine light on one,
bandaid on the other.

The car gods hate us. I'm sure of it now. I'm starting to seriously consider sacrificing a bicycle in their honor or doing an oil dance or praying to the big manufacturer in the sky. Anything. Just, anything, to turn fortune to our side.

Things were going OK until the boys were born — you know, right when we could least afford the time or money to have our only vehicle with car seats in the shop.

The first disaster came last summer when the person behind my husband didn't understand the concept of a crosswalk and ran into the back of our 1995 Toyota Corolla, totaling it in the eyes of the insurance companies. We put a band-aid on it (literally, see above) and have continued to drive it. It's been by far our most reliable car.

Our intrepid hand-me-down minivan, a 1998 Toyota Sienna, was a work horse but over the course of 2011 we had spent about $1,000 on various problems and we were looking at needing more repairs soon. We were hoping it would hold on for another year until I could start working again.

As luck would have it, my husband and I were driving along one Sunday and I pondered aloud what it meant when traffic reporters said there was a "car stall" on the freeway. Why would a car just stop working? Gracious as the car gods are, they decided to show me. No more than 15 minutes later, depressing the gas pedal just led to the engine revving before catching and actually accelerating the car. By the next morning, the minivan would only go in reverse, not forward.

Mechanics said we had a major problem with our transmission that would probably cost $2,000 to diagnose and fix. Considering the vehicle was barely worth that if it was working and we knew there were more unrelated repairs in the offing, we decided to cut our losses. I put it up on Craigslist for $1,000, made it perfectly clear that it didn't run and people flocked to buy it. Good riddance.

Right about that time, a good friend of ours was preparing to go live at a science station in Antarctica for a year. Yes, Antarctica. As in the cold, frozen wasteland at the southern pole. Needless to say, he wasn't taking his car, a 2004 VW Golf TDI.

We thought this was perfect, he would sell us his car for a good deal and we knew its whole history. It's way too small for what we really need with twins, but it gets good gas mileage and is a diesel (which at that time was cheaper than unleaded... no more) and also allows us to burn biodiesel if we want to (read: can afford to) be green. It would tide us over until we could afford a new family car and then would replace the Corolla, which was clearly on its last legs. Clean break, fresh start, brand-new (to us), I'm-not-a-soccer-mom-yet car. Hooray!

I am writing this in the lobby of our mechanic.

We have had to take this freaking car in NINE times since we bought it at the end of September — FIVE for the SAME problem. It's cost us around $1,500, in addition to the car payments we've never had before and can't really afford. I want to be pissed at our mechanic but I really do think they are trying to do right by us and they themselves have, at this point, spent several hundred dollars and many unpaid man hours on trying to get the damn thing working right.

I don't want to bore you with all the exhausting details, but it involves a seemingly endless stream of check engine lights, obnoxious sounds and bad smells.

Oh, and then last week somebody broke the window of our Corolla. In the middle of a Sunday. In plain sight on the street. To steal a backpack full of worthless papers. That would be the fourth time our cars have been broken into since we moved into this charming neighborhood the rest of Portland calls Felony Flats. (I would argue that Felony Flats is east and north of here, but I can see how hipsters from tree-lined streets and remodeled colonials wouldn't be able to tell the difference.)

So that's awesome. At least we have a year or two before we have to figure out how on Earth we're going to afford a wheelchair-accessible vehicle.

Gosh, I just can't wait to see what fun the car gods will have with us then.

Anybody know an oil dance?

Why does modern medicine throw out our brains?

2012-03-20T20:30:00.000-07:00

It is said that during the mummification process, ancient Egyptians embalmed the organs of their dead leaders in clay jars in their tombs. All of the organs, like the heart, the liver and the stomach.

All of them, except the brain, which they removed through the nostril and threw away.

Threw it away.

They didn't think it was important.

Today, we laugh at those ancient masters. How could the brain not be important? The organ that controls all the other organs? The center of our thoughts, emotions, personality, knowledge, memories, the very essence of who we are? The indicator, even, of whether or not a person is alive?

But the more I have dealt with the medical establishment in the last two years the more I feel that modern-day doctors are not that far off from those ancients. It is simply astounding to me how little they take into account their patients' thoughts and emotions, let alone their brain's ability to control the rest of their body.

This despite the fact that nearly every major medical study ever created has PROVEN the ability of a person's brain to heal the body all by itself. In fact, up to 60 percent of the time simply telling a person that they will get better as a result of a treatment — without actually treating them — makes them better. This truly awe-inspiring capacity has been sneered at as the "Placebo Effect" and brushed aside for more "real" results instead of studied further and harnessed.

It has been thrown away.

This is dismissive attitude towards the brain has been made increasingly clear to me in my interactions with Malachi's traditional doctors and therapists. They talk all the time about Malachi's muscles as if he has a muscular disorder and not a brain disorder. They don't seem to really understand that it is within his capacity to control his muscles or that aiding him in doing so is far more about teaching correct usage than forcing it, as through standers, gait trainers, ankle-foot orthotics (AFOs) and the like.

It's not just that I believe this philosophy is inefficient; I know personally how much harm it can cause not to take into account the human brain's remarkable capacity to control its body.

When doctors told me through a series of intensely shocking and frightening conversations that at five months pregnant I was not only having twins but that they might arrive very soon and therefore die, my brain went into panic mode and I started having minor contractions right there. I was immediately admitted to Labor and Delivery. It wasn't until I left the hospital against doctor's orders that I started feeling much better, and indeed when I returned to the hospital the next morning, my cervix was back to a normal length. This wasn't good enough for them, though, and they continued to outline their doomsday conjectures.

It wasn't until I started researching prematurity in twins that I discovered that the only factor proven to contribute to premature birth in otherwise healthy pregnancies — which mine was — is stress on the mother. Stress. On. The. Mother.

I fully believe that their intensely frightening predictions — based on 3 millimeters difference between my cervical length and normal — became a self-fulfilling prophesy. I have many diary entries to back this up. Every time I had to listen to the incredibly frightening predictions of a medical professional, I had major cervical change after the appointment.

This is all psychological mumbo-jumbo to the medical and courts system, otherwise I might sue them for the harms they caused to me and my sons — most notably the damage to Malachi's brain as a result of his prematurity. But, no, they would take one look at it and say, "They told you you would have premature babies, and you did. Case closed."

But imagine how the scenario could have gone if doctors had taken into account my brain and the psychological harm they were inflicting upon me? I am not saying that they should have lied to me or even withheld information, but they could have told me in a much less terrifying way. They could have supported me emotionally and psychologically. Instead of telling me there was nothing they or I could do, they could have stressed that my brain had the capacity to control my uterus, which is true, and that I did in fact have not only the odds but the power to carry my babies to term, which I did. Instead of turning a pregnant woman who felt perfectly healthy into a house-bound invalid for two months, they could have prescribed massage, meditation, or other relaxation techniques and simple recipes for a nourishing diet. Instead of psychologically chaining me to a bed in a hospital for two weeks where a person in a uniform would come in every four hours day or night to wake me up and remind me that I was in an incredibly stressful and life-threatening situation, they could have allowed me my sleep and empowered my soul.

They could have tapped into the potential of my brain.

But they didn't.

A day in our life

2012-03-10T14:47:00.000-08:00

Friday was a strangely significant day full of growth, new beginnings and development. None of these were huge by any means, but they were mileposts on the highway of life and I thought it would be fun to note them all. It's amazing how quickly we forget what daily life is like and how quickly children — even special needs children — grow at this age.
(The times are approximations, but I think it makes this fun, so just play along.)

6:45 a.m.: Malachi wakes up and simply says "Mama." It's one of the most beautiful ways I have ever been woken up. I go get him and bring him into my bed for snuggles.

6:48 a.m.: Jaden wakes up and starts screaming rather less beautifully. I wait a little bit then go get him and bring him into bed so he can crawl around and pester the cat.

7:02 a.m.: We get up and my husband plays with the kids on the floor while I attempt to make us breakfast.

7:05 a.m.: Malachi army-crawls (belly dragging) several feet on the floor for the second time in his life. He rolls over to his back as soon as we think to take out our cameras.

7:13 a.m.: We discover why storing the broom next to the stove is a bad idea when Jaden goes to grab it (he loves sweeping) and nearly spills a pan of sizzling bacon on his head.

7:40 a.m.: Malachi confirms my suspicion from the night before that he has learned the word "on" by using it repeatedly with a light-up book. This makes it one of his first non-object words, a significant cognitive step.

8:09 a.m.: I try to fold some laundry. Jaden wraps pajamas around his neck, but they keep falling off and he gets mad. I pile them on his head. He walks around like this until they fall off and then runs back to me screaming and clearly demanding that I put pajamas on his head again.

8:41 a.m.: We go outside to discover it is the first true day of spring. It was actually SUNNY and WARM in OREGON in MARCH. I wore flip-flops all day. We got to turn the heat off inside and go play outside. My neighbor's daffodils that I noticed pushing up from the ground two days ago have blooms. The world is beautiful.

8:54 a.m.: At the discount store, I ponder how I could possibly use a bag of six red onions when I only need one, while Jaden screams bloody murder about his desire to fondle and consume the entire nearby display of bananas. I decide that for $1.49 I will somehow find a use for the other five onions and continue on to buy a can of tuna... and a bunch of bananas.

10:07 a.m.: I drive to a playground that is way above Jaden's developmental level — he wants to climb into all sort of dangerous positions while I'm trying to save him and not drop Malachi — and we all have a terrifically horrible time while the other parents wonder why on Earth I'm not standing back and just watching my kids play like they are.

10:20 a.m.: I abort the playground idea and head towards the wetland area of the park with boardwalk trails that Jaden delights in following.

10:26 a.m.: Jaden learns the word "duck" for the first time. Malachi points at the birds and also says "duh!"

11:23 a.m.: Back at home, I show Jaden what the whip-like cat toy is for and he finds it HILARIOUS to watch our otherwise lazy, old cat jump, twist and attack.

12:00 p.m.: I feed them fish (canned tuna, with some red onion) for the first time in their lives.

12:06 p.m.: Malachi demonstrates for the first time that he knows the sign for "different." So, I add peas, toast and grated cheese to their trays. The tuna is mostly ignored.

12:13 p.m.: During an apparently hilarious game of "put a finger in mom's mouth," I reciprocate and discover that Jaden has not one but THREE new teeth, which may explain the few nights of screaming awake several times and the constantly shoving fingers in his mouth. Although, really, he's been shoving fingers in his mouth ever since he realized he had fingers and he hasn't gotten any new teeth since about August. Malachi's gums are still fairly smooth — no doubt his will take longer since he doesn't bite as hard.

12:24 p.m.: I sing the female part of Gotye's "Somebody That I Used to Know." Both boys listen, staring at me in dazed silence. I finish and Jaden signs "again" for the first time in his life. I'm flattered and sing it again. He signs "again" again. I decide that looking into my sweet children's faces and singing: "Now and then I think of all the times you screwed me over," probably isn't the healthiest thing to do and refuse. Crying ensues.

12:37 p.m.: Malachi demonstrates for the first time to me that he knows the sign "all done."

12:41 p.m.: I discover why having a dish-drying towel on the counter is a bad idea when Jaden gives it a yank and a wine glass shatters on the floor.

12:41 p.m. and two seconds: He attempts to clean up said wine glass shards.

12:42 p.m.: After securing Jaden in the living room, I meticulously pick through, shake off and clean all the toys, books and plasticware that were on the floor and sweep the floor three times to make sure all the broken glass is gone. Did I mention I wore flip-flops today?

12:55 p.m.: I give Malachi his noontime bottle, which he still needs for nourishment. Jaden climbs into his nighttime bottle spot on the couch and is angry when I don't come to give him his decoy bottle of two ounces of cold milk (he won't really drink it if it's cold but it saves me from listening to him scream the whole time Malachi gets his).

12:56 p.m.: Jaden stomps over to get his milk and wanders back into the living room. I tell him repeatedly that he needs to "stay in the kitchen" and though he comes back momentarily, he then starts edging further away each time I call his name as if I'm playing a game. To make it clear to him that I'm not playing a game, I take the bottle away. He cries — full on tears streaming down his face — while I wait and then explain that he needs to "stay in the kitchen."

12:57 p.m.: Still sobbing, Jaden wanders back to the living room and tries pathetically to clamber back to his nighttime bottle-drinking spot on the couch — clearly bewildered at the request I'm making of him. I take pity and bring him back to his high chair and give him the bottle. Everyone is happy.

1:10 p.m.: Naptime. Everyone is happier.

3:52 p.m.: We go to the Rhodedenron Garden where Jaden is extremely excited about showing off his new word: Duck.

3:58 p.m.: I have to tear him away from the first pair of ducks with promises of more ducks just on the other side of a bridge. After tears and some thrashing, he decides to trust me, signing "more" and then running off in that direction.

3:59 p.m.: He stands stock still in amazement at the dozens of pairs of ducks and geese in the pond.

4:02 p.m.: Our ensuing conversation goes like this:

Jaden: "DUCKS!"
Me: "Yes, ducks! Look at that one, see how pretty its wings are? Those are 'wings' that it's flapping. And look, there's a brown one. She's a girl duck. And the one with the green head is a boy duck. Do you see the girl and the boy duck?"
Jaden: "DUCK!"
Me: "Yep, that's right. And see those bigger ones over there? Those are geese. The big ones are geese. Very pretty, huh? Geese. Stay away from them though, because they can get mean."
Jaden: "DUCKS!"
Me: "Not exactly, those are geese. Do you remember from our book? Goose."
(The book with the goose in it is in Japanese so I switch to Japanese:)
"日本語で「がちょう.」がちょうは「があ, があ, があ」って."

Jaden: (pause) DUCK!

Sigh. Well, at least I can tell people he's a Duck fan.

4:11 p.m.: I take this photo of Jaden:

4:13 p.m.: I discover a good way to make Malachi smile for photos is to say "Eeeeeee!"

4:15 p.m.:

4:17 p.m.:

4:24 p.m.: We stop for a snack and Malachi eats a quarter of a banana that my husband feeds him right out of the peel. We usually have to mash it up for him. We remark on how well he's doing lately.

7:37 p.m.: My husband makes this beautiful and strangely calming video of Malachi's face in the bath. It's like watching a campfire.

7:42 p.m.: Jaden finally gets his nighttime bottle in his special spot on the couch.

8:00 p.m.: The boys are so tired they go to sleep without crying.

8:30 p.m.: We are so tired we go to sleep ridiculously early.