Thursday, June 28, 2012


The past few days have been simply incredible. I mentioned on Monday how sad I was that the twins were turning two as it was a reminder of how very slow Malachi's gross motor development has been.

As it turned out, Tuesday, their birthday, was the best day we've had in a very long time.

We met my husband for lunch but he surprised us by taking the rest of the day off. It took some convincing, but I eventually persuaded him that we should blow off all our commitments, throw caution to the wind and drive to Seaside, a little more than an hour away.

While raining in the valley, the Oregon coast was atypically sunshiny and beautiful. The boys adored playing in the sand. JJ liked digging with his new shovel set while Malachi couldn't get enough of the waves washing over his feet. Neither could he get enough of the carousel rides — though JJ was terrified of the carousel and even cried through Malachi's second ride! Perhaps it's because JJ is used to being able to move on his own and is scared of things that move for him, while Malachi is used to it. Or maybe, for no particular reason, Malachi is just a little bit more brave when faced with the unknown.

As we returned from the coast — both boys babbling a hundred miles an hour and NOT sleeping as I had hoped — my thoughts turned to all the commitments I'd blown off. That morning, The Oregonian's parenting blog ran a Q&A with me that I hadn't told my Kickstarter or blogging communities about. And speaking of Kickstarter, it was the final day of our campaign and I hadn't done a thing to get the word out about needing to make our $10,000 goal.

I needn't have worried.

Coming back into cell phone coverage, we discovered how our friends had — entirely of their own volition — taken up the cause on Twitter and Facebook. By the time we woke up the next morning, we had made our goal, and then some.


I feel so blessed and honored to have been at the focal point of a community coming together. I am so grateful to every single one of those 260 backers and the many others who retweeted or shared our campaign on Facebook or otherwise. Even more than that eye-popping $10,100 figure, this is what I will treasure most about this campaign:

Nearly 800 people — real, individual people like you and me — "liked" our campaign. This is just incredible that so many people wish us well and want us to succeed.

Dark & Light will become a reality thanks to you and today a new chapter opens in our lives. A chapter filled with joy, success and freedom.

Thank you.

....Oh, and one more thing. Remember that beach trip? Yeah, here's Malachi sitting up ALL BY HIMSELF, like it's no big deal.

Guess whose mama is looking to get him a sandbox this summer?

Monday, June 25, 2012

Two Years Old

Tomorrow is the twins' second birthday. Deadline Day.

For those of you who don't know already or haven't heard me talk about it before, scientists say that before a child turns 2 years old, their brain is the most plastic it will ever be — change can occur more rapidly and more completely than at any other time in their life.

I wonder if this means that the glacially slow pace of Malachi's gross motor development will slow even further.

For the past two years I tried to keep open the possibility that Malachi would never walk. But especially in the beginning, whenever I talked or wrote about that idea, it seemed willfully pessimistic. Stop being dramatic, a little voice said, of course Malachi will walk someday.

But now he is 2 years old and he can barely roll over. He cannot crawl on all fours, he cannot sit by himself, he cannot stand up by himself. Conventional wisdom says because of this, he will most likely never walk. And you know what? When I look at how easily he startles, when I see how his entire body tenses uncontrollably when he talks about something exciting, I know in my heart, they're probably right.

I've worked really hard these last two years, but part of me wonders — and will always wonder — if I haven't worked hard enough. Unlike other special needs moms, I hardly ever do "exercises" with Malachi — all of our therapy is integrated into our lives. I think about CP constantly, as if I am trying to outwit it, but I don't force Malachi to do repetitive tasks or push him to stand or walk in strange contraptions. Maybe that makes me a bad mom. I really wonder sometimes.

Instead I've thrown my lot in with the Anat Baniel Method. Some of you might wonder why I'm so convinced that it works that I'm willing to tap out our savings and fundraise for it if Malachi isn't actually doing that great. I'll be honest with you: I wonder that, too. But as I roll over the evidence and theories around in my head — all day, everyday — I always come back to the same conclusion: It's the best method we've found. Even our private physical therapists have been really impressed with Malachi's progress and said to keep doing what we're doing.

So I can — and do — beat myself up about coulda-shoulda-woulda, but today I realized something that gave me a strange amount of comfort:

I haven't made him any worse.

Short of causing brain damage, nothing a mom can do can prevent her child from walking if he is capable of it — and I'm sure some desperate moms of toddlers out there have wished there were something they could do. Just because mine is so far behind doesn't mean I've been terrible, it means he was never going to by now anyway. All I can do is add to his abilities to a greater or lesser degree; I can't subtract from them.

So maybe this is good. Ok, fine. He's two years old. Now I know what the baseline is. Like I said last year, at least now I know what his CP is: It's pretty severe. Now I can readjust my expectations and start focusing on achievable goals.



But don't be surprised if I'm still hoping Malachi will prove that "conventional wisdom" wrong.

There are MERE HOURS left in our Kickstarter campaign to publish the beautiful children's book Dark & Light and we are SO CLOSE to our $10,000 goal. All profits from the sale of Dark & Light will go to Malachi's medical care in perpetuity, minus 10 percent to a special fund for other special needs children. Win-win-win! Go get your copy!

Saturday, June 23, 2012

Messages of support for Dark & Light

One of the best things — maybe the best thing — about all of this Kickstarter business is watching as friends, new and old, close and distant, share the project with their friends. 

I thought I would share a few of their sentiments with you to convince you that Dark & Light is not just a great cause, but a book worth owning. The following were taken from my Facebook wall (or timeline, whatever they're calling it these days):

My friend Shasta continues to blow me away with how talented she is. This time it's a children's book that she's written called Dark & Light. All profits from this kickstarter will go to funding continued treatment of her son Malachi's CP. I hope everyone will at least take a peek at the kickstarter page, and if it's not something you can help fund, but want to help, consider sharing it around :)

♥ This would be a great gift to anyone who is having a baby, has a baby or thinking about making one. =) It helps an amazing family (part of mine) and you get a cleverly designed book that is great for all children. Thanks Shasta Kearns Moore ♥

I just backed this project for two, no, three reasons: 1: Malachi 2: Shasta is a great writer (I'm a regular reader of her blog) and I want to help her achieve her dream, and 3: In my limited experience as a mom who reads a LOT to her sons, they really love simple stories. Ever since Shasta first told me about this book sitting in the baby area at OMSI, I've believed she had a winner. I WANT to read this book to my boys! If you have a few extra dollars, this is a cause worth backing. Go Shasta Kearns Moore!

Hello Everyone! My friend Shasta Kearns Moore wrote an INCREDIBLE book for babies and anyone who reads to them entitled Dark & Light and is releasing it through a Kickstarter campaign to help raise money for one of her child's medical/therapeutic expenses. Even a simple pledge of $10 will get you a copy of this AMAZING book, and you'll be supporting a beautiful boy, his loving family and a very talented artist all at once!! Do it.

My super-talented friend Shasta Kearns Moore wrote an children's book and is selling it through Kickstarter. She's trying to raise money to fund her son's medical treatments and you should check it out.

My wife has created a beautiful children's story and we are raising money to get it published. If you have a child in your life that loves being read to or a parent who is tired of the same old meaningless drivel check out her book. It has a simple but satisfyingly deep story that is brought to life with deceptively simple illustrations. It is a tale of elemental opposites who learn to love each others differences and the magic that results. It's a wonderful read by a wonderful author, my wife!

OK, you can probably guess who wrote that last one! ;)

There are only four days left in the campaign and a little over $800 left to go on our second goal of $10,000. If we reach the second goal, all backers over $15 will not only receive the first book but an ebook copy of the second book! I have also pledged to pay forward 10 percent of the profits from Dark & Light to other special needs kids (the other 90 percent will go exclusively to my own son's medical costs). As a result, I challenged all my backers to match my pledge by adding 10 percent to their own pledge and I'm so excited that several backers have answered that call!

Go check it out to see what you have to say about Dark & Light!

Thursday, June 21, 2012

In these final days, a surprise announcement!

We are nearing the end of our wild Kickstarter adventure!

There are only five days left in the campaign and we are a mere $1,248 away from reaching our second goal of $10,000!

(HA, "mere" $1,248. That still seems like a whole heckuva lot!)

Recall that if we reach $10,000, all the backers will receive an ebook copy of the second Dark & Light book!

At this juncture it is customary among successful Kickstarter projects to start offering more or bigger rewards in an attempt to encourage backers to upgrade to the next bracket. With that in mind, I have been toying with the idea of creating stickers or T-shirts or something else with images from the book, but nothing ever felt right. This isn't a typical Kickstarter project and my backers didn't give for typical reasons. Unless I'm greatly mistaken, they gave out of compassion and hope and a desire to help my family start a new chapter in our lives, not for stuff.

So I'm going to do the same. I told you that my ultimate dream for this book is not only to help Malachi but to help other kids with disabilities. To that end, I pledge to donate at least 10 percent of the profits from each copy of Dark & Light to helping children with special needs — most likely in the form of scholarships to receive ABM lessons. Please don't ask me to tell you exactly what that will look like right now; I'm having a hard enough time just keeping up with this Kickstarter! But I feel enormously lucky and grateful to have all of your support and I know so many children who could benefit from a little extra help themselves. I'd love to be able to pay it forward.

If you haven't backed our Kickstarter yet, here's one more reason to! If you have, please consider matching my pledge by adding 10 percent to your donation (click the "Manage Your Pledge" button on the main page) and asking your friends to back the book. Each new copy sold means an approximately $1 donation to another special needs kid!

And if you really want stickers, let me know. We can probably make that happen, too. :)

Tuesday, June 19, 2012

9 tips for feeding your special needs child (cross-post)

Yesterday, I posted an essay from Enabled Kids on why it's important to treat a child's issues in concert rather than focus on a single one. 

Today, go check out my post on their site about the tips I've learned from feeding Malachi. I wrote it a while ago and just went to reread it and actually found myself laughing out loud! So go ahead and make the extra click, it's a fun read and chock full of tips for feeding your kids, even if they don't have special needs.

What? Still here? Fine, here's a sneak preview, but you have to go over there to get the rest!

1. Make a mess!
Meal times for babies are VERY messy affairs. With twins, I just had to accept that I was going to be sweeping the floor three times a day, washing six trays a day and wiping off twelve wriggling hands! With motor problems, your "baby" will probably be pretty messy for a long time to come. So accept it! The more mess he is able to make now, the faster he will learn what trajectory his hand needs to take to most efficiently get to his mouth. Parents (myself included) can often hold their children back by not allowing them to try. Unless your child is purposefully putting food where it ought not be, just repeat to yourself: It's all good. This is what washcloths are for.
And take pictures of their adorable messy faces.
And send them to me.

Monday, June 18, 2012

Why can't I treat just one aspect of my child's condition? (Guest post)

Today's guest post* is from Toronto's Health in Motion Rehabilitation, whose LIFE Program provides treatment and education for children 0-3, 3-6, and 7-12 with cerebral palsy, acquired brain injury and pediatric stroke. For more information, visit their website.

Why can’t I treat just one aspect of my child’s condition?

Whether a child has Down syndrome, cerebral palsy, acquired brain injury or stroke, every child is unique and has his own individual strengths and needs. While his symptoms may be similar to those generally associated with his disorder, his condition will always be different because of his individual personality and character. These two factors greatly influence how a child’s treatment should be approached, making it important to ensure that treatment is tailored to his specific needs, abilities, age, and stage of development. To progress, it is crucial for each therapy to follow in the footsteps of the one before it, so that treatment remains continuous and is reinforced at each step along the way.

In this regard, our goal in treatment is not to work on a child’s speech or motor function as if they were separate from the rest of his condition. Instead, we need to teach the brain how to perform different tasks, as a child’s function is based on commands which come from the brain. Everything else, such as a child’s symptoms or the tone in his body (hypertone or hypotone), happens as a result of the brain’s function. Being unable to perform a certain task can lead a child to adopting compensation patterns which, in turn, causes other compensation patterns to develop as well. In the end, a child may have to perform several compensatory movements just to do a simple task, and this is something we will need to address during his treatment.

The importance of integrated treatment

To solve this issue, our first goal is to consider a child’s treatment as a whole and ensure that each treatment is connected to one another. The overall focus should be on the function of his entire body, rather than on a single area such as his head or limbs. With every part of the body working together as one unit, it is important to develop a child’s control of his trunk or torso which also stimulates blood circulation and the transport of nutrients to the brain. When the trunk’s function is developed and a child can support the weight of his head and limbs, he will then be able to improve his condition and better respond to what he is being taught in each of his treatments.

These improvements will definitely make a difference in every aspect of your child’s life as he continues to progress in each of his therapies. Of course, we need to realize that speech language should not simply be about trying to get a child to communicate, and occupational therapy isn’t only for getting a child to learn fine motor skills. Everything is considered as a part of a whole — and for these reasons, each individual session will be able to gradually build on each of his achievements. Furthermore, by continuing a child’s treatment at home and incorporating it into his daily activities, your child will be able to reinforce the skills he learns and achieve more as a part of his everyday function.

Teaching normal function: The 3 W’s

Of course, for us to build on this improvement, we need to remember that a child’s development is an ongoing process. As mentioned above, ultimately our goal is not specifically to teach motor or sensorial function — it is to teach a child to function independently, and encourage him to touch, interact, communicate and discover the world around him. The body is a tool which facilitates this interaction, and this process is something which goes on for every second of his life. As a parent, caregiver, family member or therapist, our work continues as long as he continues to learn.

To help you with this process, I recommend that you use 3 W’s: watch, wait, and win. By watch, I mean that you should observe what and how your child is doing, such as what he likes and doesn’t like. By wait, I mean that you should be patient, explain something, show the child how it is done, describe the process, and proceed with the movement or task. The last step is win: as he progresses, the task is accomplished, and soon a child can perform the task independently.

By understanding and following these steps, you will be surprised at just how much your child can accomplish. As he learns, you will learn a lot about your child as well, and be able to see just how successful he can be.

If you have any questions or comments, leave me a comment down below. Thank you!

* This post is part of a post swap that I agreed to with Health in Motion. I was not paid for it and my posting it does not necessarily mean I endorse all of their practices. But they seem pretty cool, and I like what they had to say here. Check back tomorrow for a link to the post I wrote for them on Malachi's newfound eating abilities. 
AND be sure to snatch up your copy of Dark & Light: A love story for babies before it's too late!

HuffPo just did a story on our Kickstarter!

Amazing! I can't believe how much interest we've gotten in our Kickstarter project for Dark & Light! The Huffington Post just put up a story on their Parenting website. Check it out!

We are 2 backers away from a staggering 200 people saying they support this idea, which to me is worth more than the $7,822 we've raised — but that's awesome too! There is little more than a week in the campaign and I need everyone to keep up the buzz. If you can take a second to share the HuffPo story with your social networks it could go a long way towards achieving our second goal of $10,000! And don't forget that if we reach that goal, backers (you have already backed it, right??) get a bigger reward, too! Win-win-win, that's what we're after here!


Sunday, June 17, 2012

Silent Sunday

I've decided to change my regular Wordless Wednesday feature to Silent Sunday. I feel like it better fits the mood of the pictures I display with little to no words. Enjoy!

Saturday, June 16, 2012

A New Age of Fatherhood?

I was lying on a park bench, watching the pale, fluid light behind my eyelids. My toddlers were across a playground full of dangerous equipment, but I didn't need to watch them. They were in the company of an imposing-looking man with a thick beard — their father.

To my right, car doors would periodically open and shut, excited children's voices percussed by low masculine tones.

"How about the swings?" said one father, exiting a vehicle. "Swings first and then we'll come back for the slide later."

"Oh, I don't know if I could beat you in a race," said another pedaling alongside his elementary-school-aged daughter.

"Jelerhitomangaba," or something to that effect, said another in a language I couldn't understand.

Lying there, relieved of the duties of motherhood for a moment, I was suddenly overwhelmed at the notion that all of these children had positive, healthy and regular interactions with their fathers. The very fact that these father-child conversations were so casual and mundane suddenly seemed extraordinary. I wondered if this had ever been as true in American history as it is today.

To be sure, fatherless homes are FAR more prevalent today than ever. According to the National Fatherhood Initiative, 33 percent of American children live without fathers compared to just 11 percent in 1960. (That figure jumps to 64 percent, by the way, in African American households. Ouch.)

This is incredibly sad not just for those kids, but for society as a whole. Statistics from that same group show a truly staggering array of issues that arise when fathers are absent.

But, keep in mind that in these days of increased feminine power and status, it is not always the father's fault or decision that he is not in the home. Also keep in mind that statistics like these don't tell the whole story, like marriages in the war years when fathers were absent for long periods of time but still considered "in the home."

So, while statistics are great at showing quantitative values, they aren't real good for qualitative ones. Nothing I found could show how much better of a job the fathers who stick around are doing in relating to their children and taking on more household duties.

I guess it's just a sense I get from the flyers I see for fathers groups and the men I see pushing strollers and the proliferation of fatherhood books in the bookstore. Those of you who were alive more than 30 years ago, correct me if I'm wrong, but these things feel like a very new shift in fatherhood. It seems to me that today's men are forging new trails, smashing stereotypes and often doing the enormously difficult work of overcoming in-grained patterning from their own absentee, abusive or negligent fathers.

This is not new to their generation — my father and father-in-law are both wonderfully calm and supportive, despite having a less-than-ideal examples set for them by their fathers. But looking around at the men in my circle of friends, I do think that these days more than ever engaged and committed fatherhood is the rule, not the exception.

Much like mothers, today's fathers may not always love being around their kids, nor changing their entire lives to revolve around them. But the difference these days is that fewer of them see it as an option.

Psst.... Have you gotten your copy of Dark & Light: A love story for babies yet? 

Thursday, June 14, 2012

More press for our Kickstarter campaign!

The mainstream press continues to highlight our campaign! Fast on the heels of Monday's article in the Eugene Register-Guard, today's Portland Tribune has another great write-up on us and our Kickstarter campaign!

Check it out here, share it with others and leave a comment!

The campaign is doing amazing, but we still have a ways to go to our second goal. If you haven't bought your copy of Dark & Light yet, please check out the video on the site and see if you agree with the other 186 backers that this a wonderful book for kids!

Wednesday, June 13, 2012

Giggly twins, take 2

It's still funny after all these months...

(Taken February 2011)

 (Taken May 2012)

Our Kickstarter campaign backers for the board book Dark & Light: A love story for babies are blowing me away with their excitement and generosity. Please check out the campaign and see if you'd like to join them in making a miracle happen.

Monday, June 11, 2012

Celebrations, rewards and my secret dream

There's lots to celebrate today around the Kickstarter campaign!

First of all, because we met our $5,000 goal so much ahead of schedule, I have announced a new goal and a new reward! If we reach $10,000 — enough to help me pay for an editor and a babysitter — ALL backers over $15 will get a copy of the first AND second e-books! This is just my way of saying thank you for your continued support! My dream of creating a perpetual source of funding for Malachi's needs is becoming a reality thanks to YOU.

Here's the other wonderful thing to celebrate:

My hometown newspaper, The Register-Guard ran a huge story on us and our campaign! The reporter, Randi Bjornstad, did a fabulous job and I feel so lucky that she wanted to do a story on us!

If you read through to the end, you'll also notice that I revealed my secret dream. It's for this book to become so popular and for us to raise so much money that we can start a nonprofit to help provide other kids with these life-changing Anat Baniel Method lessons. This is what you are contributing to and this is why we need every single backer — from the person who donated $1 to the person who donated $1,001. The more copies of the book we sell, the more traditional publishers will sit up and take notice. Your support at this early juncture could catapult this book to success and help out a lot of awesome kids!

Please watch the video (at the top of the Kickstarter page) and see if you like the book as much as the 143 other people who have already backed this project! It really is a unique and wonderful gift for the little ones in your life.

16 more days left in the campaign! I can't wait to see what other masterpieces we will create.

Cross-post on These Broken Vases

Hello friends!

Just a quick note to let you know that Ellen Stumbo had the amazingly good grace to ask if I could do a guest post for her popular blog These Broken Vases. I very gladly accepted! And I'm very touched at the note she put at the end so be sure to read that!

Check out the post here and then poke around the rest of her blog. Ellen is part of the fascinating and amazing group of people who adopt children with disabilities from foreign countries, rescuing them from seriously awful conditions and people who consider them worthless. I feel so lucky that my journey with CP has introduced me to these amazing kids and their forever families.

If you'd like to learn more yourself, check out the wonderful organization Reese's Rainbow, dedicated to facilitating adoptions of children with disabilities.

Friday, June 08, 2012

We made it, we made it!!!

A large donation put us over the goal on our Kickstarter campaign this morning!!

I have had a crazy day so I haven't been able to write about it until now, but I still can't believe it!

I've been so amazed throughout the last 11 days at the compassion and generosity coming out of the woodwork — friends I haven't actually spoken to for years who have reached out and given me a virtual hug. It wasn't just that one incredible backer, it's the other 131 who came together and made this a reality. I'm so touched and privileged to count so many of them as friends and so lucky that the rest of them found their way to this project.

Donations are still coming in even after we hit our goal so now comes the big question:

Do we dare to dream bigger?

As many of you know, I started this campaign with a two-pronged goal: earn enough money to place a minimum print order for Dark & Light and fund Malachi's ABM lessons. The money we have raised so far will print 500 copies of Dark & Light and send Malachi on one (approximately $3,000) trip to the ABM center in San Rafael. With a new goal we can do even more. I have an idea of what I would like to do (hint: No. 2), but you are my community now and I want your input. Here are our options:

1. Print more copies of Dark & Light to have on hand when the hoards realize what a fantastic book it is. The more backers we get, the more copies I know will need to be printed, the cheaper each copy will be and the more money Malachi gets.

2. Fund the development of the second book in the series. As I mention on the project page, I have two sequels in mind but I need the time (i.e. childcare) to develop them. If we meet our new goal, all the project's backers will get a free ebook copy of the second book. In that way, we all benefit from growing this project as big as it can get.

3. Turn Dark & Light into an app with talking pages and other interactive features. I've had a couple of people interested in this option already. I would need to raise enough money to pay a developer to create an app, not to mention figure out how the app business works.

I wanna know what you think! Please vote for your choice in the comments section! And if you haven't already gotten your copy, don't wait!

REVIEW: The Anti-Romantic Child by Priscilla Gilman

Let's make this short because it's 10 p.m. and my kids are inexplicably still awake and I'm grumpy and I haven't been able to bring myself to write this post until now.

I was asked to review "The Anti-Romantic Child" by Priscilla Gilman.

I'm sorry to say it was not my cup of tea.

Like Laura Shapiro Kramer's "Uncommon Voyage," this was a memoir from a privileged East Coast mother of a child with special needs. I'm trying to figure out why I liked "Uncommon Voyage" and I didn't particularly enjoy "The Anti-Romantic Child." I think it's because Kramer's son's condition seemed so similar to my own son's. Also, Kramer focused much more on alternative treatments and what new insights those brought to her life. Gilman's focus instead was to take every opportunity to weave in lines of Wordsworthian poetry to her narrative, an effect many people found charming but I often found pretentious.

I guess I just don't like that sort of poetry.

Gilman talks about her journey as the mother of two children, one with a disability called hyperlexia. At least, I think so. Gilman doesn't actually mention that term until p. 84 and then occasionally references other issues and diagnoses that seem to have little relation. It's possible her point is that her son is unique and she doesn't need labels to relate to him — which is a wonderful idea but since she doesn't make that explicit, it leaves me, the reader, confused as to what exactly is going on. Her son Benjamin's main symptoms are that he reads much too well for a child his age and he has trouble responding appropriately to questions, though these abnormalities seemed to improve rapidly and dramatically with intervention. At no point that I saw did Gilman acknowledge how relatively mild her child's challenges are in the world of special needs. In fact, on p. 97 she confessed a fear that Vassar might not hire her because she had a child with a "severe" disability.


What Gilman does do a wonderful job at is juxtaposing her romantic ideals with the realities of motherhood. Much like "Uncommon Voyage," I found it cathartic to hear some of my own feelings echoed in the experiences of another mother. But, ultimately, as a stay-at-home mom struggling to make ends meet with two 2-year-olds, one of whom can't even crawl, I found trouble relating to many of her struggles as a well-to-do New York City daughter, Yale doctoral student and Vassar college professor whose children can walk, talk and interact relatively seamlessly with the world around them, albeit with a few quirks.

I have no doubt that other people will enjoy this book immensely, but like I said, it just wasn't my cup of tea.

I received a free copy of The Anti-Romantic Child as part of a blog tour in exchange for my honest review. Feel free to check out the other posts on the tour as many of them had much nicer things to say about the book than I did.

Our Kickstarter campaign is so close to our goal! I'm so grateful to all of our 127 backers for joining together to make something awesome happen. Don't you want to join them? A minimum pledge is just $1!

Thursday, June 07, 2012

An invitation to community

Check out my post for today over at Team Aidan, a wonderful blog that talks about how they raised $40,000 for a wheelchair-accessible van, what it really means when our country balances its budget on the disabled and elderly, and what parents of special needs children want to hear and what they don't.

My post today talks about our Kickstarter campaign and how I came up with the idea. Here's a snippet:

This really seems like a win-win-win. Backers get some really cool swag, Malachi gets the therapy he needs and I get to publish a book. There’s also other, intangible “wins” like the crazy good feelings I get about other people caring enough about our struggle to do something about it and the sense of pride backers feel about helping to make something awesome happen.

Head on over there to read the rest!

Wednesday, June 06, 2012

Our journey through the darkness

(A poem, to be read slowly)

Dear Malachi,

Sometimes it's so hard that I can barely stand.

I get so sad... mad.

For you. With you. At you.

Like you, I have no idea what to do; I don't even know where to begin. Everything I try feels wrong somehow.

I feel like I should be able to do this. I should know what to do; it's right there on the edge of my consciousness.

Just out of reach.

Am I pushing you too hard? Not enough?

How do I find the balance to helping you find your balance? Where are the keys to your cognition ignition? Whose shoes do I have to put on for you to walk a mile? A block? A single goddamn step?

I've no idea where we're going, Malachi, and what I really don't know is how we are getting there.

But when you can't see where you're going, I suppose the best option is to go slowly and to hold on to something in the darkness.

Hold my hand, Malachi. Show me where to place my feet.

Move me.

Teach me.

Forgive me.

Together now, baby steps.

Let's go.

Our Kickstarter campaign for the beautiful board book Dark & Light: A love story for babies is doing phenomenally well. Please consider buying a copy for the babies in your life (there's always that stray baby shower to attend, right?). The book is inexpensive and 100 percent of the profits from the campaign will go to Malachi's medical needs.

Monday, June 04, 2012

The ebook version of Dark & Light is now available!

Thank you to everyone for making week one of our Kickstarter campaign such an amazing success! I truly did not think we would make it this far this fast!

In response to numerous requests, I have figured out how to bring this picture book to e-book form! Woo-hoo!

But here's the best part: I have decided to make the e-book FREE to everyone who buys the board book! That's right, all backers will get a copy of the ebook in whatever format they desire (PDF, ePub, mobi, etc.) just for being so awesome and supporting our dream!

This also allows me to open up a lower bracket for backers who only want the ebook or don't have much scratch right now (I get it.). So, there is a new reward level of $5 for the ebook only.

Hopefully that will entice more people to join our cause! Even more than the amount of money we've raised, I'm deeply moved by the number of backers we have — at last count 87. Wow. So many people who care enough about this book and my family to act. Thank you!

If you know people who are interested in the book but didn't feel they could afford $10, please let them know about this new ebook opportunity.

Although we've raised about $3,000, we are still $2,000 from our goal and that's a lot of $5 and $10 pledges away! I'm guessing that most people supported this project because they were genuinely interested in the book, so be nice to your friends and give them the same opportunity! This may very well be the only press run of Dark & Light EVER so this is their only chance to get a copy!

Again: thank you!

Saturday, June 02, 2012

The halfway mark already!!

Why, yes, that is my face under the word "popular."
What alternate dimension is this?

Wow. Amazing.

When I launched my Kickstarter project I thought it would be reasonable — and perhaps a bit lofty — to expect that we would raise $1,000 a week and then have to push hard for the last week to reach our $5,000 goal.

Well, considering we just blew past the halfway mark and it hasn't even been a week, I'd say my predictions were a bit modest! All of my contributors have absolutely blown me away with their generosity, and not just with money — like I said before it's not really about that. I have had countless friends simply share the link to my Kickstarter campaign, taking the time to write profound and heartfelt messages of support.

It's been truly an honor to be part of this ground-swelling of support and I thank every one of my backers for deciding to be part of this dream.

Unfortunately, I have to inform you that donations have come to a near-stand-still in the last 24-hours. Perhaps this is a fluke, but it's definitely got me worried and I'm asking for your help to keep the momentum going. If you know of anyone with kids in their lives, please let them know about this book. Even though I'm aiming Dark & Light at babies because of the black-and-white, feedback from older children has been very positive, too. I've also heard from a couple people in the visually impaired community that this is a perfect book for their kids.

And hey, you like it, right? So your friends probably will, too!

(Note: Backers may notice that this is a slightly modified version of an update sent out through Kickstarter. I thought it might also be of interest to my blog readers, so I put it here... you know, because I can.)


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