Monday, December 24, 2012

To Be, or Not To Be Santa?



It was the perfect present.

First of all, it was big. Say what you want about size not mattering, but when you're 2 and it's a present under the Christmas tree, the bigger the better.

Second, it was a push-toy with a grocery basket. Perfect for JJ who is convinced that he is 40 years old and perfectly capable of doing his own grocery shopping — not to mention dressing and feeding and bathing — thankyouverymuch.

(And maybe — just maybe? — Malachi will learn to stand or push on it? — no, banish the thought.)

Third, it was collapsable so it can lay on the floor with Malachi AND it has three large easy-to-push buttons that play music, including his favorite — the alphabet song.

But finally, and most importantly, it was $4.99 at Value Village.

Like I said. The perfect present.

So I covered it in striped red wrapping paper and fussed with the bow. In a flourish, I added the tag and wrote:

To Malachi and JJ

and then paused.

What to write in the from?

I am a huge fan of the truth and, conversely, am not a big fan of lying. Especially to children. And especially to my own children. I believe that there is a way to explain just about anything to just about anyone.

So I always assumed that I would not perpetuate the myth of Santa. It's silly and manipulative. I can certainly understand that it would be useful to have a way of encouraging children to be good during the stressful holiday season. I also think it would be a really great way to skip tantrums in the store by rerouting them into having to petition some far-away, unknown man — who is totally and completely not me, so don't even try — if they really want something. And who doesn't like munching down on all the best Christmas cookies on Christmas Eve?

But much like a lot of things that would make my life easier right now — television, junk food, credit card debt — I feel like I will pay a much bigger cost in the end.

So, both my husband and I agreed that we would just not tell them about Santa and, simple at that, it wouldn't be a thing.

Well, now — in the third Christmas since their birth — my kids are old enough to at least loosely understand concepts like Santa and I've found that it is very much not as simple as that. Books, movies, toys, songs, games, malls, Santa is EVERYWHERE.

When it becomes an active discouragement rather than a passive ignorance, it feels a lot different. What am I supposed to do? Watch a movie together about how painful it is for Santa when we don't believe in him ...  and then turn to them and say: "That was a fun movie, huh? But you know, Santa really isn't real, so even though the movie says Santa will suffer if you don't believe, you really shouldn't believe."

And what do I tell well-meaning adults, including family members, who ask them about Santa?

"Bah humbug! How dare you lie to my kids! Grinchy-grinch. Grinch-grinch-grinch."

I thought of all these things as I sat and looked at my perfect present. But then I thought about how many times — from nutrition to cerebral palsy treatments, to starting a business — I go against the grain, try so freaking hard to do the right thing in spite of what everybody else is doing.

And I thought of the ecstasy of seeing those mounds of presents magically appear Christmas morning. And I thought of the exciting stories my dad would tell of hearing jingle bells on Christmas Eve.

And I thought: This is not a fight worth having. Put down your sword, Shasta. Put down your sword and pick up a Christmas cookie. It's time to relax.




What about you? Does your family do the Santa Claus thing? Why or why not? I'd love to hear from you in the comments!

Friday, December 14, 2012

How Our Reactions Might Alter the Course of the Next Mass Shooter

I have had the great misfortune to be close to two mass shootings in my life.

The first was the Thurston High School massacre in 1998 when I was 14 and the shooter, Kip Kinkel, was 15. From the open study hall of my own high school, 10 miles away, I sat and listened to continuous coverage during my three free periods in the middle of the day. It was there that I first discovered how strange people's reactions to this type of tragedy can be.

A boy not much older than me stood up and rather brusquely turned off the radio that everyone else was listening to and said something to the effect of "turn off that crap." I was surprised that not only did he not want to glean as much information as possible about the situation — my own reaction — but that instead of just leaving, he chose to impose his desire on the other several dozen people there.

The latest shooting was Tuesday, at Clackamas Town Center, a scant three miles from my house. This is a place I frequent quite often with my two-year-olds, especially on rainy days like that day.

Again, I found myself in information-gathering mode. Not only did I look at the Facebook statuses of my friends but I figured out how to search ALL of the public Facebook statuses for Clackamas Town Center and read many of those. Most of the sentiments were prayers and well-wishes in one form or another. Some of the things I read turned my stomach. But as I read more and more and more statuses, patterns began to emerge in how people reacted to this bad news.

The reactions that bugged me — reactions that, to be honest, I myself experienced during the aftermath — were ones that I'm going to call Statements of Separateness.

Such as: This bad thing won't happen to me because I don't shop at malls. 


Or: Thank goodness the people I know are safe. 

Or: If only people would listen to me that nobody should have guns, this wouldn't have happened.

Or: If only people would listen to me that everybody should have guns, this wouldn't have happened. 

And, particularly: The shooter is a "nut" or an "asshole" — an "other." Nothing like me. Nothing like anybody I know and love.

Here is one thing I know for sure: The victims, the families of the victims, and, yes, even the shooter, are not so different from you or me as we want to believe.

Here's another thing I know. The issue in these particular cases is not really gun control. If you look into the details of spree killings, almost none of the gunmen would have been deterred with much less than a full repeal of the Second Amendment. They either stole their guns from law-abiding citizens or were themselves, up until that moment, law-abiding citizens.

And though I think mental health services are woefully inadequate in this country, neither is the issue mental illness.

This article in LifeScience reveals that mass shooters are unlikely to be psychotic because to carry out such a scheme it takes precisely the organization and focus that the mentally ill lack.

So what is it? Why does this keep happening? What is missing in the lives of these erstwhile normal human beings to feel so removed from humanity that they want to lash out at anyone and everyone?

Perhaps we need to look beyond the gun debates and the baseless self-assurances that completely random tragedies like this couldn't happen to us or the people we love.

"Many mass shooters, rather than wanting to be alone, have a history of struggling to connect," sociologist Kathleen Newman said in the LifeScience article.

What if...

What if instead of focusing on how different we are from those involved in this tragedy, we concentrated on how we are the same? What if we showed compassion? And not just to the victims and their families...

... what if we showed it to the shooter himself?

Can you even imagine? 

I admit, I struggle to. After all, those could easily have been my babies in the line of fire.

But I also can't imagine how Clackamas shooter Jacob Tyler Roberts was able to conceive of a Separateness so complete that he truly hated anyone and everyone.

It makes me wonder what would happen if somebody could conceive of a Connectedness so complete that he or she truly loved anyone and everyone.

A Connectedness on a scale as unimaginable as these killing sprees.

Is that even possible?



Update 12/14/12: I wrote this before the even more horrific elementary school shooting this morning in Connecticut. I decided to keep the above the way it is for I have no words after what happened a continent away. My deepest condolences to everyone involved in the senseless violence here and there. 

Monday, December 03, 2012

KATU News does a story on Dark & Light!

KATU News Reporter Emily Sinovic did a wonderful job on this piece about our family and the story behind "Dark & Light: A Love Story in Black and White." Check out the video!


 

By the way, you  can look at the full book and order your copy in our book store!

Wednesday, November 28, 2012

What I Should Have Said to My Son's Physical and Occupational Therapists



Every time I venture back into the Physical Therapy (PT) World, I reemerge scratching my head and muttering to myself.

Don't get me wrong — I think physical therapists are very kind and smart and have a great deal of knowledge and experience about cerebral palsy. That is why I keep going back every few months. Just to make sure I'm not getting too far into the Anat Baniel Method (ABM) World and missing some key piece of information. But by and large I find physical therapy philosophies to be fundamentally flawed when dealing with a person with a brain disorder not a muscle disorder.

In October we had a PT appointment during which Malachi was forced to sit upright with as little assistance as possible as he attempted to manipulate objects with his hands. Every few seconds, Malachi would nearly topple over and as a result he became more frustrated, closed and defensive in both his movements and his attitude. My overall impression was of somebody trying to teach him Swedish by making him memorize long sentences phonetically. It was clear to me that by the end of such a frustrating and bewildering venture, Malachi might be able to approximate Swedish but it would never be functionally useful to him because he would have never learned what the words meant or been allowed to order them into sentences that expressed what he wanted to say.

Yesterday we had an appointment with a new PT and OT at a very well-regarded local hospital. (This was an appointment I made some months ago, likely during an "ohmygodamIcompletelymessinghimup?" late-night stress-a-thon.) Because it was a new appointment, they did very little work with Malachi but even so, it was like we were talking about a different disorder.

For example, I told the PT that Malachi's primary difficulty was in understanding and controlling his spine. The PT corrected me, saying "his trunk." Well, yes, his trunk, I guess that's true. But the vast majority of the power and control in your trunk comes from your back i.e. your spine and the manipulation of those large, powerful muscles around it. In my (albeit limited) experience, most PTs ignore the back and concentrate on the tummy muscles, like a bodybuilder worried about his six-pack. But look at any typical baby who first learns to walk and you will see his tummy poofed out, his lumbar curved and his legs far apart. This is a very stable and easy position. If you could somehow force that baby to walk with his butt tucked under and his tummy rigid, he would not be pleased and he would probably fall down a lot.

During another part of yesterday's appointment, the OT had a few objects for Malachi to manipulate. When he would be unsuccessful after a few seconds, she would grab his hand and "help" him with the task. While he was happier that the ring was on the stick, or whatever it was, I could tell that he had learned approximately nothing about what it would take to put it there — except perhaps that he needed her hand on his to make the magic thing happen.

At another point, she was watching him struggle with a iPhone toddler puzzle and remarked at how good he was at figuring out ways around his motor difficulties. "What a smart boy," she beamed at me. "You can't teach that sort of problem solving." I feel so sad at that remark because that's just not true. But how could I possibly explain that in a few short seconds?

Perhaps I should have said this: ABM is all about teaching children that they have a choice to make, empowering their choice (even if we think it's the wrong one), and encouraging them to continually search for better alternatives. The self-confidence, limitless growth and sense of security that results simply cannot bloom in a child who is forced to do things the "correct" way (ways that to him seem dangerous or incomprehensible or else he would already be doing them), or given tasks that are so far beyond his ability as to only teach him that he is hopelessly incapable or dependent on others for success.




Sunday, November 25, 2012

Evolution of a Thanksgiving Table (Silent Sunday)

10:17 a.m.

11:19 a.m.

12:58 p.m.

1:33 p.m.

2:53 p.m.

5:27 p.m.

5:32 p.m.
"Dining room" table in the living room — nowhere else to put 10 people!

Wednesday, November 21, 2012

Great Gift Ideas that Give Twice!

A quick post before I go into Turkey Day hibernation!

Whether you are doing Black Friday, Small Business Saturday, Cyber Monday or the brand-new Giving Tuesday, we've got ya covered!

My high-quality children's book, Dark & Light: A Love Story in Black and White, counts for all categories AND we are doing a special promotion. Buy two books and get the third FREE. Enter code HOLIDAY1 ! Offer valid allll the way until Dec. 2!

Check out the full story here: http://darkandlightbooks.com/book-store/

Also, a buddy is doing some beautiful jewelry and holiday decorations at Hope
For Mattie:

http://hopeformattie.wordpress.com/holiday/
http://hopeformattie.wordpress.com/hope-for-mattie-jewelry/

AGAIN: All the profits go to our kids! Give more than one gift with a single purchase!

(And please feel free to comment with any other products like this that you know about! I'd love to collect a list.)

Thank you! And feel free to share using the icons below! And for goodness' sake, eat some turkey!


UPDATE Nov. 24: Another buddy has a bunch of cute ornaments for sale that help her son Jakob with his treatment program: http://www.helpmewalk.org/ornaments/ Go check them out and give some "JOY" to Jakob and your own friends and family.

And here is a great list by LoveThatMax from last year with even more cute crafts that give twice: http://www.lovethatmax.com/2011/11/holiday-gifts-that-benefit-kids-with.html

Wednesday, November 14, 2012

A Pajama Revolutionary

If this past weekend were a person it would have shoved a mirror right up to my nose and screamed "LOOK!!!"

"LOOK how far you have come in six months!"

"LOOK how much you've grown!"

"LOOK at what you've accomplished!"

As I wrote about earlier, on Sunday I held a book release party at Annie Bloom's Books in Portland for my board book Dark & Light: A Love Story in Black and White. (Frequent readers will know that this board book is not only awesome and a fabulous addition to any book collection but that all the profits are dedicated to my son's medical costs.) This was the culmination of an effort that started in April to bring Dark & Light to print, something that six months ago I thought was very doubtful.

But that's not all that was going on six months ago. Last April I went to a workshop by Anat Baniel — founder of the Anat Baniel Method, our primary form of therapy for Malachi. The workshop was up in Seattle and it was there that my husband and I decided to fully commit our family to following her philosophies in the hopes that Malachi would progress faster and perhaps even learn to crawl.

(Also of note: It was only in January that Malachi said his first word. Today he speaks in full, spontaneous sentences such as: "Mama, pick-er up, pease," "Climb on Daddy, pease!" and his personal favorite mealtime game where he asks himself to read the digital clock in the kitchen: "What time. Is it? It's! Eight! Twennnnny-Sis! Eight! Twennnnny-Seven! Eight! Twennnnny-Eight! Eight-twenny-eight. TWO eights!")

 (Yes, he says all of that. In a constant stream. For the entire meal.)

So on Saturday, I went to another of Anat Baniel's workshops, this time here in Portland. The eight-hour workshop was not just a lecture, but experiential. Most of the day was spent on the floor and much of it was doing very small, slow movements that really made you feel how babies learn to move. We spent an hour or more figuring out how to roll over. You would be amazed at how many adults have forgotten how — at least forgotten how without unnecessary stiffness and pain.

Photo courtesy Ed Dassie


Indeed, I'm one of them. Part way through a lesson on rotating the shoulder, Anat pounced on me for an opportunity to show the whole room how much easier I could be doing it. She told everybody to gather round as she grabbed my fisted arm and fairly threw me back and forth on the ground with almost no effort whatsoever, even putting me up to sitting before I fully realized what was going on.

I have no idea how she does it but somehow she was able to completely by-pass my muscles and talk directly to my skeleton. Even now as I think back on my memory of the event, I remember only being a skeleton and only vaguely aware of the muscles and organs and other normally perceived parts of my body.

By the end of the workshop, everyone was buzzing and excited about ABM and wanting to know more. Me too, I was reinvigorated with our choice of ABM. A huge missing piece of the puzzle for me fell into place during Anat's presentation on the idea that there are two different types of brain plasticity — one that is ingrained through repetition and one that is ingrained through variation and that it is the variation plasticity that is missing in special needs kids. Kids with special needs can only do something, like pick up a ball, a limited number of ways, whereas typical kids can pick up a ball in any number of ways and only after hundreds of experiences of picking up the ball do they settle on the best way. This means that the last thing caregivers and therapists should do is give their disabled children repetitious tasks.

I was also riveted by guest speaker Dr. Christina Bethell who gave a very enlightening talk on the efficacy of mind-body treatments, the reasons they are not currently recognized by mainstream medicine and how to overcome those obstacles. I made a beeline to her afterwards and hope to work with her to get ABM covered some day in the future.

But what struck me over and over again at this workshop was how far Malachi and I have come since the one in April. Perhaps it struck me so hard because I really haven't felt like I was moving forward very quickly at all towards my goals. It took being in such a similar situation to realize how really different my circumstances were from the last time we were there.

For starters, I felt like I knew almost everybody at the workshop and if I didn't know them, they sure knew me. One woman stood next to me in line for the restroom and said she'd read all of my blog and that my honesty had helped her immensely to feel like she wasn't the only one feeling the way she did about being a special needs mom. Another cluster of a half-dozen people came from Malachi's Early Intervention program. Another man I met on Malachi's very first trip to California told me that during the group luncheon (that I didn't attend), Anat was singing my praises for creating dialogue among parents and caregivers on a forum I started — again, about six months ago — that has since swelled to nearly 500 members. In fact, the whole damn workshop was orchestrated by Malachi's primary practitioner Joanna Cutler who wouldn't have even been trained in ABM if I hadn't introduced her to Kathy Shean Jones, our other practitioner.

In so many ways that I could see and probably other ways I couldn't see, that event would not have been possible without me.

You may think I'm being very arrogant and egotistical when I say that. After all, I had zero part in what I'm sure was a ton of work to put on this workshop.

But in fact, for me, this realization of how many waves my little drop has made is incredibly humbling and awe-inspiring. Why? Because, and I mean this very seriously, almost every single one of the things I did to set those balls rolling I did in my pajamas.

I mean it. In my pajamas, I whine online. In my pajamas, I argue with Early Intervention therapists who come to my house early in the morning. In my pajamas, I drag myself and my two sons to ABM lessons and whine and argue some more with them.

Let me tell you. I don't feel a divine edict. I don't feel like anything I'm doing is making a difference. And I certainly never feel like I'm doing enough or doing it well enough.

And yet, somehow over the course of time, all of these little droplets came together and joined with other people's little droplets and before we knew it we were riding a river of action.

It's so remarkable that I want to run outside — in my pajamas — and shake people by the shoulders. "Don't you see what this means?" I want to yell at them. "I'm nobody! Nothing! I have no special power at all to make any sort of change and yet I did! All I did was tell my story over and over again to anyone who would listen. That's it! That's it. And look what happened! Look what you — yes, YOU! — can do just by telling your story! Isn't it amazing????"

I mean, isn't it?

Who knew how much power there was in simply talking about your own experience? And that is one thing that almost everybody can do.

Try it yourself. Tell the full truth and nothing but the truth and see where you get six months from now. Just try it. You'll be amazed.

Monday, November 12, 2012

'Dark & Light' Release Party!

My current life in a nutshell: children's books, adorable-yet-out-of-control twins
 and a fun-loving husband who does silly things like grow a weird mustache for "Movember."


A strange and wondrous thing happened yesterday. About 50 amazingly kind and generous people packed into a tiny bookstore in Southwest Portland to celebrate the release of MY book, "Dark & Light: A Love Story in Black and White."

No, seriously.

It wasn't just a dream I had that I was a successful published author. I even have pictures to prove it. See?






(New or irregular readers: Dark & Light is — all modesty aside — a beautiful and surprisingly profound board book I wrote, illustrated and published as a fundraiser for my son's medical costs. Check out the full version here and feel free to virtually join in on the release party by picking up a couple copies! With simple, progressive images and a multi-faceted storyline, kids and adults of all ages love it!)

I also gave a quick plug for my novella: A Twist of Fate (available in paperback or ebook)!



One of my favorite parts was seeing how my boys just took it all in stride. Like: "OK, cool, yeah, let's all have a big party in this strange place and mama will read us our favorite book. Awesome! That's not weird at all." During the reading, the guys even said some of the words along with me and grinned when I did the sound effects for lightning, just like we do at home.



In fact, several times during the Q&A period, I would start gesticulating with the book and Malachi would get all excited. "Mama's... book... again... please! Read. Again. Please!" he said in his trademark slow and careful diction.

For my introduction, I tried to write a very short speech so that I would remember it, but alas. Paragraphs became blurted-out, run-on sentences, my proverb probably didn't make any sense and I had to pause several times in a failed attempt to keep tears from running down my face. Ah well. At least the Q&A went OK.

For those of you who weren't there, you can pretend that this is how my speech went. Those of you who were there, this is what I wanted to say:


Thank you all for coming. In particular, I'd like to thank my husband who has sacrificed as much if not more than I have to let me follow my dream. I want to thank my family, especially my mother-in-law who takes the boys so that I can work on this project. I wouldn't be the person I am today without them and this project could never have happened without their support.

One of the reasons writers like writing is because they hate speaking. (pause for laughter) They also like writing because it's much easier to revise and tinker and say exactly what it is they want to say.

But perhaps the reason we most like writing is because, unlike speaking, it is an activity that often gets better when we cry. It's funny how our fingers can convey so much more of what's in our heart when we let loose the emotions that shut off our vocal chords.

So, I'm going to do my best but you'll have to bear with me.

There is an old Chinese proverb... that I don't know very well and might not even be a Chinese proverb. So, I'm going to butcher it for you. But it's OK because I'm a writer. I get to call it "poetic license." It's one of the perks.

Anyway, it goes like this: A master and student are talking and the student says: "Master, what does Hell look like?"

"Hell is six people sitting around a round table. There is a huge, delicious buffet in front of them but they are only allowed to eat it with six-foot chopsticks. No matter how hard they try, no one can get the food to their mouths so they are all starving and miserable and full of unrequited desire."

So the student says, "But Master, what does Heaven look like?"

"Heaven is much the same. There are six people sitting around a round table, a huge buffet in front of them that they are only allowed to eat with six-foot chopsticks."

"That's awful, Master!" the student exclaims. "Why would people starve and be so miserable in Heaven?"

"Ah," says the Master. "In Heaven, the people do not starve. They are full and happy. In Heaven, the people cooperate. Each diner feeds another from his chopsticks and no one wants for anything."

That is how I feel about this project. Through your cooperation and support, you all have turned my Hell into Heaven, a curse into a blessing.

Thank you for your support. And please remember that if the story of this book resonates with you it will resonate with your friends, too. Do them a favor and let them know about Dark & Light so they can pick up their copy too!

Thank you!



P.S. Special thanks to Jessie Kirk and Laura Stanfill for the photos you see above! These baby-totin' mamas both did — and regularly do — incredible work while simultaneously caring for two young children.  In fact, the weekend before, Laura held her own release party for Brave on the Page, a remarkable and fascinating collection of interviews and essays from Oregon authors (including yours truly!).

Mama power!


Monday, November 05, 2012

Bugs, Butts, Monkeys and Skeletons
Happy Halloween!

This Halloween was the best so far. The boys got introduced to the idea of going around to neighbor's houses, knocking on the doors and then NOT going inside. Apparently that is the trick. 



My little guys were matching skeletons, as you can see from this ridiculously cute picture. (They both decided to play with their belly buttons at the same time while watching Blues Clues. So stinkin' cute.)


Get a load of the look on JJ's face. Watch out ladies!

Matt and I were both generic black Halloween-y-type-things. The creativity of Halloweens past was tamped down this year by the release of my board book Dark & Light: A Love Story in Black and White. More on that later. 




Here's the guys Trick-or-Treating. We revived their monkey jackets from last year as they still fit and it was too cold for just the skeleton suits alone.

Once we got back from the few houses we went to, JJ pulled the lid off one of the jack-o-laterns on our porch while I wasn't looking and said "Oh. Ants." I turned around and saw his tiny little hand covered in black sugar ants and I said "ACK! ANTS!"

JJ, however, wasn't the slightest bit perturbed. The ants are gone now — likely irritated that a giant ruined their meal — but JJ still pulls the lid off the small one every time we go outside and proudly says: "Ants!" And then he pulls the lid off the bigger one and says: "No ants."

Turns out candy makes Malachi into a thesaurus. After one or two rather sugary fruit snacks and a single Kit-Kat stick, he said: "Candy! So delicious! ...So good! ...So tasty!"

He also made his very first butt joke, which really ought to be a milestone in one of those silly developmental tests he always has to take.

My husband was saying: "Oh my gosh, oh my gosh."

Malachi interjected — arching his entire body, so we knew he had thought of something exciting —  with: "Oh... my... ... ... BUTT!"

Uh-huh. Them's my boys. Talkin' 'bout bugs and butts while dressed as monkeys and dead things. 

Sunday, November 04, 2012

"Pi-cher, mama" (Silent Sunday)

"Pi-cher, mama," is JJ's new favorite saying.
My budding photographer, apparently.
He also loves: "Wassiss Sis?" (What is this?)

Sunday, October 28, 2012

In the 'Tunnel' (Silent Sunday)

Malachi has crawling around so much lately. When he saw the coffee table the other day, he started chanting "Tunnel! Tunnel!" as he crawled under it. JJ thought that was a good idea and joined him.

I can see pillow forts in the not-too-distant future....



Wednesday, October 17, 2012

A Parent's Perspective (Cross Post on Notes from a Pediatric OT)



Thanks very much to Abby of Notes From a Pediatric OT for hosting me on her blog today!

That's right, that means you are just one simple click away from seeing:

Four qualities I look for in a therapist

Three resources I can’t live without

A word of advice for the parents of a child newly diagnosed with cerebral palsy

And much more!

Go over there and check it out! While you're there, feel free to poke around Abby's site. She has a lot of really great resources for parents, including an awesome Amazon store full of good present ideas for the special needs kids in your life!

Oh, and if you are one of Abby's readers, welcome! Feel free to poke around my site, too. We're all friends here!

Monday, October 15, 2012

The Return to a Normal
That Never Was

As I pedaled my way past house after house in the sub-development of cookie-cutter houses, a deep sense of longing settled into my chest. Not for the size of the houses, which were at least three times the size of ours, nor even for the relative opulence of their upper-middle-class trappings casually strewn about: cars, basketball hoops, etc. No, the longing I felt came when, on our family bike ride, we passed the open doors of garages with tools hung up neatly on white peg boards and plenty of open room for cars to park on gleaming concrete surfaces. I longed for that much order in my life, to have a garage that wasn't dark, dank and cluttered with years of items I have been too busy to properly organize and store.

They must have really boring lives to be able to spend so much time on their garages, I thought bitterly.

I tried to bolster myself with this thought and march on. But when my husband left with Malachi for another therapy trip to San Rafael, I decided to spend the week's worth of spare time cleaning out our garage.

It took me less than a day. Good grief taking care of only one typically functioning kid is easy!! JJ calmly followed me around and played with stuff as I sorted through the garage. Once, I heard him coming up behind me repeating a genuine question in his tiny voice: "A... hat? A hat? A hat?" I turned around and saw he had placed an old dusty wheelbarrow tire on his head and, yeah, it did look sort of like a hat.

By Wednesday of last week, my house was reorganized and spotless and I had regained some self-respect about my housekeeping skills. I started to turn my attention to our severely neglected front yard, but stopped myself.

Maybe I could have a little fun? So JJ and I went to the zoo and the children's museum without the encumbrance of a stroller. We ate out at restaurants without a care because he can sit in the chairs and eat everything on the menu. The world was suited to us, designed for us.

I took artsy-fartsy pictures of JJ, which I discovered is much more difficult than taking pictures of his brother because he moves around so damn much.









Life was so easy and we having so much fun that I began to worry how I would feel when Malachi returned. This was the life I thought I would lead: the one with only one kid. The one that was carefree. The one that allowed me to organize my life into the shapes that I found pleasing.

During our last day of this freedom, I took JJ to a movie theater's "mommy matinee." Like walking around and eating out, this is something we can't do very well with Malachi. He is terrified of anything dangerous or sudden, and movies with even a modicum of plot contain a lot of danger and suddenness.

But it turns out that JJ doesn't like movies with plot either. I guess I never noticed when I was distracted by Malachi's crying. After 10 minutes he was pleading with me to leave, so we abandoned the idea and went to a nearby park.

At the park (where I got to actually sit on a park bench instead of facilitating play) were identical twin boys, only a few months older than mine. I felt the familiar pangs of jealousy as I watched them play together and eat a snack together.  But it wasn't until I took this photo that I realized I wasn't jealous of their mother, with what I presumed to be her relatively easier existence, I was jealous of the boys.


JJ looked so alone that I began to realize the longing I was feeling was for his brother's companionship. Not a brother who could walk, or eat or do anything exactly like he can, but just a brother. JJ had been an only child for a week, but he was never destined to be an only child. He was always, always going to have a brother.

We returned home and as I looked around, I discovered that, in the days since Wednesday, the house had slipped back into its usual state of clutter. I went out to put something in the garage and even it didn't look nearly as clean as I thought it had before.

That was when I realized, this was my normal. That "normal" life I thought would have, the one with one typical kid, a tidy house and time to go on outings, that never was and never will be and I guess I don't really want it. This normal, the one I live every day, it's not perfect and it's not necessarily happy, but it is where I feel most comfortable. It's mine.

And, hey, at least it's not boring.



Stumbo Family Story

Thursday, October 11, 2012

Thank you, Sparrow Club

This thank you letter was printed at the request of the DDHS Sparrow Club. My family has been blessed by an amazing number of donations in the past six months, all of which are helping to fund Malachi's treatments. The Sparrow Club got the ball rolling and I'll be forever grateful to them.

Dear Sparrow Club students, faculty, sponsors and donors,

I am crying as I think of what to write in this letter. The Sparrow Club program was literally life-changing for me and my family and I don't even know where to begin.

I suppose to start, I must thank the 3,000 people packed into the DDHS gymnasium last May, every one of whom stood up to signal their willingness to help me and my family. Beyond any amount of money, that in itself inspired more change in the way I feel about my son's disability and our chances of everything working out OK. Standing in the middle of so many people from so many different cultures and beliefs all saying with their entire bodies that "yes, we want to help you," was the most powerful and beautiful thing I have ever witnessed. I will never forget it, and I don't think I will ever be able to remember it without tears in my eyes.

From that moment forward, I began to feel less fettered by fear and more empowered to ask my community for what my son needed. Before, I couldn't imagine going to my friends with my hat in my hands and worried endlessly about what they would think of me if I did. But the Sparrow Club showed me the enormous power of giving and its hidden secret: It feels good to give. People want to help their friends and neighbors through life's struggles, but they need to be given an opportunity.

So I began preparations for our own fundraiser for the month of June. I had written a children's book, called "Dark & Light: A Love Story in Black and White," and aimed to sell it through the online crowd-source funding platform Kickstarter. My lofty goal was to raise $5,000 in 30 days to start a business printing "Dark & Light," using the profits to fund Malachi's treatments in perpetuity. By the end of the campaign, we raised more than $10,000 and had five major media outlets, including The Huffington Post, do stories about the campaign. I am certain that this Kickstarter campaign wouldn't have been nearly as successful without my experience with the Sparrow Club.




But the lessons I've learned from these fundraisers haven't benefited only my family. I have also given several modest donations to other friends' fundraisers and have pledged 10 percent of "Dark & Light's" profits to be "paid forward" to other kids with special needs. Two $500 grants have already been sent. It is in this way that the Sparrow Club has made ripples throughout the community.

Before, I would have thought it was crazy for a person to simultaneously fundraise AND donate to other causes, but it is the strangest paradox — the more one gives, the more they get. I've learned that hoarding, consuming and even acquiring money never satisfies a person's desire for more — only through giving it away can we finally feel we have enough.

I also want to thank Sparrow Club sponsor Adidas for giving my family a $500 shopping spree at their company store!




At first, I was confused and didn't understand what I could buy for Malachi at a shoe store. Since he cannot walk, he rarely wears shoes. But then I realized that for once it wasn't entirely about him! My husband and I hadn't spent any money on our own wardrobes since the news about our boys and it still feels wonderful to slip into our new shoes and apparel. In fact, we had just begun our first exercise program since before the boys were born and I know that the prospect of putting on our new Adidas wardrobe was often a motivating factor in continuing the program. In this way, you have helped our entire family become fitter and healthier, thank you!

And thank you to the wonderful volunteers who sewed those beautiful blankets for the boys. They are just the perfect size and weight and they still use them every night.






Finally, I am sure you want to know how Malachi is doing after all of this fundraising towards his treatments. The combination of all of these efforts meant that we were able to take him down to the Anat Baniel Method Center in San Rafael, CA., a staggering four weeks this summer, broken into three trips. He is now talking, he knows his ABCs, can count to 30, and is eating a bit better. But perhaps the most dramatic difference is that during our trip at the end of August he finally learned how to crawl and has been doing so with greater and greater speed all across the house!





Thank you, thank you, Sparrow Club. And be proud, David Douglas students and sponsors. Without you, I am certain my son would not be doing as well, and neither would we, his family.


Shasta Kearns Moore

Friday, October 05, 2012

Ob-la-di, ob-la-da,
Life Goes On

Suggestion: Press play to listen to the song while you read this.





It was one of those mundane moments when everything just hits you.

I've had lots of those moments in the past two years and most of them were not good. Like at the twins' second birthday party when JJ and a boy about his age were running through the house, giggling nonstop, and I realized with a deep ache: "This is what having normal twins would have been like."

Or the time when I sat and listened to two mothers discussing immediate post-partum experiences and realized that — despite having had two children — much of the information they shared was new to me. Since my kids had been in the NICU for six weeks after their birth, I couldn't even think of a single thing I could contribute to the conversation that they wouldn't find frightening or at the least pretty awkward.

But today was different. Today, I got an e-mail from the printer for my new children's book Dark & Light: A Love Story in Black and White with this picture:


Wow. There is something just so exhilarating about seeing so many copies of my book. Perhaps you just see a boring shot of a pallet of grayish books, but when I look at this picture, somehow my bones feel longer and lighter and my heart quickens. This picture whispers to me: "I am an author. A real author." And, equally: "I finally have a long-term plan for Malachi's medical expenses."

Holy shit.

But the demands of today didn't allow me to dwell for more than about a minute on this picture. There was another therapy trip to California to pack for and children to feed and errands to run. Semi-typical mom stuff.

So it wasn't until this afternoon when I was folding laundry that the mundanity-induced moment of clarity hit me. The autumn sunlight shown through my living room curtains onto the beautiful brunette heads of my boys playing quietly together. Malachi was sitting remarkably well in his Bumbo chair while JJ sat next to him on the floor. Suddenly I had a flash of the first time I put Malachi in the Bumbo chair when he was a few months old and how he slumped over to the side instead of sitting up straight  like JJ had. It was the first time that I could really see that Malachi was disabled and I cried for a long time. I thought of how uncertain and terrifying everything seemed back then and how some (though not all) of my worst fears have now been laid to rest. I rejoiced in how much easier things are now than they were then and how much I've learned and how far we've come. In that moment, the present was truly OK and the future seemed bright and manageable.

As I silently beamed at this really rather boring scene, over the radio The Beatles jammed:

Ob-la-dee, ob-la-da, life goes on, brah!
La-la-la-la, life goes on...

Thursday, October 04, 2012

The politics of special needs blogging




Lately I've been having a hard time blogging. I've chalked it up to being ridiculously busy, which I am, but I think it's more than that. I've always been busy, but blogging was my stress release — not another chore, but something that gave me energy. Over the last few months, that's become not as true and I think I know why.

When I first started, I was mostly talking about my pain and my process and the new information I was learning as I entered this Brave New Special Needs World.

But even though the pain is still with me every single day, even I'm sick of talking about it. This leaves as one of my primary subjects the Anat Baniel Method, which is our primary form of treatment for Malachi. I like the method, but it's hardly perfect and if I say negative things about it, somebody on the 400-person forum I started might call me out. And if I say positive things about it, I risk alienating friends who have chosen the traditional route.

Even though a blogging friend of mine recently pointed out how great it is that special needs moms can freely celebrate each other's kids' accomplishments and are therefore out of the traditional Mommy Wars, there is an aspect of special needs motherhood in which this is really not true. The path that we have each chosen to help our kids achieve their personal best is so entwined with all the pain and loss and anger of the diagnosis, that talking about our choice of therapies can raise hackles or send someone into a quiet depression.

I have never been afraid to speak my mind, regardless of social restrictions like these, but it does turn writing about my life into work and right now, I have about all the work I can handle.

There are other things going on in my life that I would ordinarily be open about except that they involve a dramatic shift in our financial situation, which includes but is not limited to the Kickstarter campaign for Dark & Light: A Love Story in Black and White. Money is always a tricky subject. But I feel like I'm starting to have to commit lies of omission whenever I talk and I'm getting tired of it. I hate lying in all forms, even lies of omission, and even though some would say I don't owe you guys an explanation, I feel like full honesty is the least I can do for the kindnesses you've shown me. And I think the vast majority of you would be happy for us about these things, but I still worry that someone will begrudge us our good fortune.

Regardless, I've opened the can of worms now, so I guess I should tell you what I'm talking about. Remember how bad our car situation used to be? Well, about a month ago we financed a sleek and sexy 2009 Mazda 5. It's like a mini-minivan. It's got rolling doors and a third row of seating — which if folded down provides plenty of trunk space for all of our various accoutrements — but it's a small enough vehicle that it still gets pretty good gas mileage. And there's all these little things that are so much better than the 1995 Corolla we've been limping along with, like an auxiliary port for our iPhones, a self-adjusting heater/air-conditioning system, and warning lights that only come on when something is actually wrong. The wonders of modern engineering!

We thought very deeply about this car purchase and weighed all the factors, but eventually decided that this option was best as it offered the most value and would meet our needs for a long time to come. I hope I don't need to say what follows, but I will: absolutely no money from the Kickstarter campaign was, is, or will ever be used for this car.

Which leads me to Dark & Light. I have been spending the vast majority of my free time setting up my new publishing business, S. K. M. Publishing, in order to create a long-term source of income for Malachi's therapies. Since I don't physically have any of the books yet, I haven't "sold" any of them and therefore I haven't taken any profits.

So, you might be wondering, how are we affording all of these trips to the ABM Center in California? Well... get ready for a shock.

After the Huffington Post article came out on us, a man I have never met before contacted me and said he was touched by our story and wanted to help. He has helped out several other families with children with CP and he was wondering if he could help us. His only request is that he remains anonymous and in the background, so I won't talk about him much except to say he has dramatically altered our ability to pay for Malachi's treatments. I call him, with all seriousness, our Guardian Angel and he has revolutionized the way I see charitable giving. Now that you at least know he exists, I hope to be able to talk more openly about the insights he's given me.

And that's really why I'm writing this post and divulging all of these secrets. Because I do have posts inside me just bursting to come out but I couldn't talk about them freely with all of this baggage hanging around.




Wednesday, October 03, 2012

The beautiful and bizarre ways people find this blog

Like most bloggers, I am fascinated by my stats — the anonymous information Google collects about who you readers are, how many of you there are and where you come from.

In particular, I always get a kick out of the search terms that lead people here. I'm not very good about optimizing my site for search engines — I'd rather have an interesting or poetic post title than heading each one with "WHAT IS IT LIKE TO HAVE A CHILD WITH CEREBRAL PALSY? MOM REVEALS TOP 5 THINGS YOU NEED TO KNOW" (hmm... wait a second....)

So my most frequent search terms are for things like:

outrageous fortune
outrageousfortune.net
outrageous fortune blog
shasta kearns moore blog
shasta outrageous blog


Etc., etc. Pretty boring. But every once in a while one comes along to make me smile. Such as:

funny stay at home mom blogs   (Aw, thanks.)
art   (REALLY? How could my blog even be in the top 1,000,000 hits for "art"?)
feel better now mom cerebral palsy   (awww. I kinda do, now that you said that.)

Many of them would probably seem strange to you, but to me they are are obvious allusions to certain posts I've done:

brain injury "not funny anymore" for It's Not Funny Anymore
i hate social workers for Why I Hate Social Services (Social workers take note: I get a LOT of hits from this search term. Maybe you need to up your game.)
"tickle therapy" for Malachi's Many Cerebral Palsy Treatments
anat baniel method movement matters for any number of posts about ABM
ciao bella italia for Ciao Bella Italia!
cute pregnancy belly photos twin boys for 97 Percent or Would I Have Terminated My Son?
egyptian embalming techniques for Why Does Modern Medicine Throw Away Our Brains?
aren't natural conversations the elephant in the room? for The Elephant in the Room

Many others give me insights into the human condition:

i have cerebral palsy and need money
having a baby sounds like the worst thing ever     (hehehehehehehehehe..... yeah.)
quitting therapy by email
living with a brain injured son
the worst thing my husband has ever said
why people are so mean

And some of them are just plain bizarre!

deer antler + cerebral palsy    (huh??)
plastic triplet lens    (THREE hits from this. Three! What is this??)
art    (again! Really?? I'm honored, but...)

Then there's the seedy underbelly of the Internet.... porn. Really? What sort of searches for porn lead you to a stay-at-home mom's blog about her son's disability? Glad you asked:

ثثهىل فاث لاقثشسف Translation from Google: "Seeing the breast"    (Sure! No problem! Here's my post on the horrors of breastfeeding called Seeing the Breast Half-Full. Not what you were expecting, huh? I'm shocked.)
i sometimes fantasize about my son    (Move along, dude. SERIOUSLY.)

But here's the best one, which led me to believe it was finally time to publish this list of search terms I've been collecting because I have OFFICIALLY reached the end of the Internet.

hot girls with cerebral palsy     (YESSSSS!)

Sunday, September 23, 2012

Silent Sunday: A trip to the tire store

Very low lighting, so not the best picture,
 but Malachi hates the flash so I had no choice.
Anyway, how stinkin' cute are these boys in tires??
It was JJ's idea.

Wednesday, September 19, 2012

Amazing before and after videos of a child with cerebral palsy crawling

Earlier, I posted videos of Malachi prop sitting for a full minute and also commando crawling around on his beloved new alphabet mat. And yesterday, I posted a full description of the many changes I saw in Malachi during our fourth trip to the Anat Baniel Method Center in California.

Today I have something really special. As I watched Malachi crawl around a few days ago, I remembered a video I tried to take for a very generous friend who sent us a new iPad for Malachi. I had wanted to show how the iPad was enough of a motivating force for Malachi to inch forward. And it was, but the video is so sad. Malachi looks more like a man dying of thirst crawling towards an oasis than a self-motivated and empowered little boy, so I decided not to send it.

But perhaps I took that video for a useful and joyful purpose after all. See for yourself:


The first video was taken Aug. 6, a couple weeks after returning from our third trip to the ABM Center.




This one was taken Sept. 16, a couple weeks after returning from our fourth trip.




This seems to me a remarkable difference in little more than a month. What do you think?

Tuesday, September 18, 2012

Going the distance

It looks like we are finally passing by some milestones on this long, long road.

Our latest trip to the Anat Baniel Method Center in San Rafael, CA., was during the last two weeks of August. We decided to drive down this time, taking two days each direction. Fortunately, I have family in various spots along the way, including a pretty good midway point, so we didn't have to pay for a hotel.

In fact, thanks to some really generous people who opened their doors to almost perfect strangers, we didn't have to pay for a hotel at all on this trip. For the first week we stayed at a blog reader's house in Oakland and for the second week we stayed in a distant relation's house just outside of Vallejo. Both places meant 45-minute commutes to the ABM Center in San Rafael, but it's not like we had anything else to do!

We did manage to stay busy anyway, of course, and even got in a little sight-seeing at the Golden Gate Bridge, the California Academy of Sciences and various other spots around the beautiful Bay Area.





In fact, my very favorite few hours of the entire trip was spent just off the freeway outside of San Francisco. We'd gone into the city to see a friend but the traffic to get back to the North Bay was absolutely atrocious. Instead of fighting it, I decided to take the road less traveled. The exit I got off at had this new American mall designed to look like an old European town square. I splurged on a gourmet pizza in an outdoor cafe and a glass... OK, maybe two... of wine to drink along with the fudge I had picked up earlier in Sonoma. With Malachi strapped to my chest in his sling, we walked over to watch the sun go down over the water, dancing around and giggling and not caring who saw. I called my husband and he said it was the most "like myself" I had sounded since I got there. I guess I needed the stress relief.

By the second week I was really dragging and getting a little tired of Malachi. I don't think I could be around anyone that constantly for that long, least of all a very needy 2-year-old. Unfortunately, though, I hadn't thought about this eventuality and didn't set up any sort of respite care plan for while I was down there. By the time I had a few names and numbers, it was too late. Something to remember for next time.

The lessons themselves went well. I managed to show up on time with a fed, bright-eyed and eager-to-learn Malachi to every single one of those 20 appointments.

Well... almost every single one.

For one afternoon session, Malachi didn't fall asleep for his nap until late, so I crept into the lobby with him in my arms, thinking the new environment would slowly wake him up. It did, but he was very groggy and soon fell back asleep. When our practitioner, Neil, showed up and began very gently working on his spine, Malachi lazily watched for a little while and then seemed to decide that that was just fine but he was going to continue his nap, thankyouverymuch.

(Man, I wish someone would give me a massage while I napped!)

Because Malachi was in my arms for the entire 45-minute session and because he was asleep, I got to be much more "in" on the action than usual. It was a truly remarkable experience. The movements were so slow and controlled. It looked like this beautiful, extremely slow-motion dance with a sleeping infant. So fascinating.

The next day, I ran into Anat Baniel in the parking lot and told her about the sleeping lesson and she said that indeed, they can do a lot of fine, subtle work while their clients are asleep, even things they can't do when they are awake. I'm guessing this is because their clients' conscious mind isn't around telling them what they can and can't do. Instead, the practitioners get to talk directly to their subconscious. It makes me infinitely curious what Malachi dreamt about during that time.



While I was down there, I kept a coarse list of notes on things Malachi was doing that seemed different to me than before. This is what it looked like by the end of the trip:

• Crossed legs (wide, relaxed hips)
• Reaching for toys
• Rolling onto tummy easier
• Able to play alone for a while
• Two- and three-word phrases (Malachi said "Apple juice, please," his first more-than-one-word utterance a few days before we left.)
• Lifting head when pull on arm. (This is something the practitioners do, and I'm sure there is a more graceful way to describe it. Basically, they pull on his outside arm to get him to come up through his side from laying down, and this was the first time he started to realize his head and neck needed to come along for the ride instead of lolling to the side or straining backwards.)

• Leaning forward in high chair (At right is the high chair. It has two triangles, labeled 1 and 2, on the very front when the tray is removed and it became a mealtime tradition for Malachi to sit forward and point out each of the triangles. He was definitely not able to lean forward in that chair like that during our last trip and I was amazed at how capable he was at preventing himself from toppling forward out of the chair.)
• Leaning on his arms more
• Able to prop sit for a few minutes (video here)
• Leaning on one hand and pointing or grabbing with the other
• Spine is very twisty, pelvis can rotate almost completely
• Butt comes up an inch in crawling at times
• Hands more open, especially flat on table
• Lifting head with arm and shoulders instead of lolling back, especially when get out of car seat
• Can drink water from straw (messily)
• Tugging on knees with feet flat (laying down), wiggles entire body through spine and weight through soles
• Sylvia (practitioner) says when she moves the upper back it "goes totally into the pelvis"
• Constipation improved (Believe me, this was not due to diet. It was pretty hard to get him to eat much besides PediaSure and cereal while traveling.)
• M attempts to close mouth or suck bottom lip to prevent drooling
• Chris (pracitioner) says hands and fingers are much "clearer"


Wow. That's the first time I've looked at the list in its entirety! Such great stuff! One thing I forgot to mention was that he can sit in a grocery cart seat now in what my husband half-jokingly calls a "pretty good impression of someone with trunk control."

And I can't believe I forgot the most exciting of all of Malachi's new developments! Behold:




Malachi can crawl now! And does so with greater and greater speed around our house! Though I often wallow in self-doubt about whether, how and how much ABM is helping, this is one thing I'm certain he would NOT be doing by now if it weren't for this method.

But as exciting and validating as our trip was, by the time August 31 arrived, we were ready to go home. And, indeed, that seemed to be in our fortunes as well.

Malachi's reads: "A new challenge is near."
Mine: "The road before you is long. Drive safely."

Farewell, San Francisco area. We'll see you again, soon, I hope.



This was our fourth trip to the Anat Baniel Method Center in San Rafael, CA. Click these links to read about the first ("On Our Way" and "Did it Work?"), the second ("On Our Way: The Sequel" and "Our Therapy Trip to California"), and third ("More Answers and More Questions After Our Third Therapy Trip to California".)

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