Outrageous Fortune

Awe-inspiring video on "The Making of" Dark & Light!

2013-05-15T08:00:00.000-07:00

I am so thrilled to finally be able to unveil this video to you!

For the last few months, friends of mine (these guys gave me my first journalism job!) at Northwest Media Services created this "pitch" video in an effort to get our story about Dark & Light into a national spotlight. It's interesting just for that reason, but there's a lot of other great reasons to watch it. If you're curious about why Malachi has cerebral palsy or what led us to choose the Anat Baniel Method as our primary form of treatment, this has those answers.

Check it out and let me know what you think!

If this video resonates with you in any way, I invite you to share it through social media. And if you happen to know anybody (or anybody who knows anybody...) in national media please pass this along to them.

Want to pick up your very own copy of Dark & Light: A Love Story in Black and White? Of course you do! It makes a great gift for the loved ones in your life and a fabulous addition to schools, libraries, special needs programs, doctor's offices, etc., etc. Click here to visit our book store! All profits go directly to Malachi's medical fund (which in truth is running on fumes about now...!).

Thanks for your support!

The First-Time Homebuyer Blues

2013-04-30T14:20:00.000-07:00

It's as I'm packing up the last boxes from my first home that it really hits me how few things went right with this, the biggest purchase of my life.

I tried. I tried really hard to make the "smart" money decisions, but it seems none of that mattered in the end.

In the mid-2000s, everyone was urging me to buy property, and with the insane loan options they had then I probably could have gotten something nice. But, fresh from a college economics class, I said: No way, prices aren't matching with incomes. The bubble will certainly burst.

Burst it did in 2006. By 2008, the year my husband and I were married, we thought we were getting in at the bottom of the real estate dip on a small 2-bed, 1-bath home in a rough-but-up-and-coming neighborhood. The house was small, but it was also considerably cheaper than the maximum loan the bank would give us — another way we thought we were being "smart" with money.

We found a special first-time homebuyer's program through the Portland Development Commission and jumped through their many bureaucratic hoops. Except, during closing, they suddenly revealed that since my husband had been picking up some overtime in the months leading up to our move, we no longer qualified for their special rate. Instead we would have to take the 5 percent APR of the Oregon Bond Loan, which at that time it was no different than the market rate.

Over the years, we invested in a few home improvement projects as able — renovating the shower and its moldy window, adding a small dishwasher, repainting absolutely everything.

We even heard about a promising new Clean Energy Works program spearheaded by Mayor Sam Adams. The idea was a good one. Say your gas bill is $100 a month. This program set up a loan with $50 a month payments that you use to install insulation that lowers your gas bill to $50 per month. So, you still pay $100 a month, but you use less energy.

That part of the program did, technically, work. Everything else about it was horrid. The recommended contractors were awful; the work had to be redone several times. Sitting down to sign the loan paperwork was also the first time we learned that the loan structure was such that large amounts of interest were paid first and then after six years would be a balloon payment of several thousand dollars. Not awesome.

Fast-forward to today. Our modest first-time home is worth $50,000 less than we paid for it; $30,000 less than we owe on it. This doesn't include any of the money we spent on upgrades.

Because we have an Oregon Bond Loan, we are not with Fannie or Freddie and so don't qualify for any of the national loan restructuring programs aimed at people like us. Because of unforeseen circumstances — namely, a pregnancy resulting in two children, one with a significant disability — we also have dramatically less income and less savings than anyone assumed we would at this point. If we did, we might be able to invest in a refinance at today's current 2.5 percent rates that would almost halve our monthly mortgage payment.

As it is, every month we pay the bank as part of our mutual fantasy in which the house is adequate collateral for our loan. For some reason they refuse to consider the possibility of continuing this fantasy in a refinance that would make it easier for us to not foreclose on the house.

But we're "smart" about money, remember? We haven't missed a payment; our credit is perfect. Doesn't matter.

Oh well. Even if we could refinance, the home is too small for a family of four, especially when one of them comes with a lot of equipment.

This confluence of circumstances means we are moving. Into a larger home, yes, but one that our family of four shares with four other adults. We are doing like many Americans in this lackluster economy and moving into a multi-generational household in yet another attempt to make a "smart" money decision.

Depending on your politics, you may read this account and think anything from: "See? This is why we shouldn't have any government programs," to: "See? This is why we need better government programs."

One thing I know for certain is that my "smart" money decisions look pretty dumb in hindsight.

Things That Have Made Me Cry Today

2013-04-17T15:33:00.000-07:00

This morning I visited the perfect preschool. It's within walking distance, Montessori-ish, parent co-op, inexpensive, loads of integrated lesson plans, big beautiful playground.

But, small classrooms crowded with learning stations, bark mulch playing surface outside and no one experienced with physical disabilities. Worst of all, the swings don't even have a back part. Malachi loves the swings. How will he ever be able to swing without a swing seat?

I listened to the teacher describe a typical day with mixed emotions. She noted how each kid put up their jackets on a hook in the crowded hallway and then signed their name in, then wandered to whatever station they chose. Malachi wouldn't be able to participate in any of that, I knew, and it made me very sad. But I was also so proud because the entire time she was describing this, Malachi was sitting completely unsupported on a regular chair, picking up small foam pieces and putting them in a bowl.

How far we have come.

How very much further we have to go.

The preschool is perfect for JJ. And Malachi, for that matter, as long as we can get some help. I really hope that we can make something work with our local services to bring in a full-time aid. We'll see.

But there were other wonderful things that made me cry today.

First, Yankees fans — sworn enemies of the Boston Red Sox — sang Sweet Caroline, a Fenway Park standard, in support of Boston as it mourns the marathon bombings.

H/T: Indian Country Today

Then, I saw that the New Zealand house of representatives burst into a traditional love song after legalizing same-sex marriage.

H/T: MacLean's

How far we have come.

How much further we have to go.

EDIT: My kids woke up from their nap, so I didn't have a chance to add this link, from Chasing Rainbows. It seems the entire special needs blogging community is mourning with Kate Leong for the loss of her son Gavin, a 5-year-old with cerebral palsy. I didn't have the fortune to hear about Chasing Rainbows before her family's tragedy but I can easily see now why she is so beloved. She is so open, honest and eloquent in her writing — so obviously kind and loving. I highly recommend popping over to read a few of her posts like, In Lieu of Flowers and the beautiful story of organ donation, A Meeting Orchestrated From Heaven.

The Lessons We Can Learn From Special Needs Siblings

2013-04-13T08:31:00.000-07:00

I was typing fast in a rush to get out the door... and get done before JJ's willpower to not touch my computer buttons faded. He was sitting next to me: "Whatchya doin', mama?" he asked about a dozen times.

"Working," I said as I finished up the Special Needs Sibling Week post. Then I realized: "Oh yeah, I'm doing this for you." So I stopped and I show him the picture on yesterday's post: our guest blogger's identical twin girls, one of whom had a severe brain injury.

"Look, twins!" I said. "These are same-same (identical) twins. Do they look the same or different?"

"Different," he said, clearly pleased to be part of mama's work.

"Yes," I said, "but these twins are like you and Malachi. This one can walk and run, like JJ, but this one has cerebral palsy and can't walk, like Malachi."

"Paaal-zie," he said, and I watched his face process this new information. I wondered what was going on behind those raised eyebrows. Finally he said:

"Go to Africa and see flamingoes."

You see, the day before we had gone to the zoo. We went all the way to the Africa part to see their new flamingoes exhibit. JJ seemed to be saying that since they are like him and Malachi, they must have gone to the zoo too.

Clearly the things that are important in his world do not include his brother's ability to walk.

I pressed "Publish" on the post and we rushed out the door to an Anat Baniel Method series we are doing with a traveling practitioner. I dropped him off with new friends who have twin baby girls, one of whom has CP, before going to the ABM lesson where I passed a 3-year-old twin boy who has CP. The bonds of our similar situations and similar treatment philosophy have already brought our three families close — well, as close as twin parents with their notorious lack of free time can be — and I had a vision into the future of playdates and birthday parties.

And suddenly I realized that this thing that I hated so much in the beginning — the pure "Why me?" rage at having not only twins but disability to deal with, no longer felt like such a bizarre twist of fate. I have many online friends who are part of my Parents of Multiples with CP facebook group and I've somehow managed to meet two other families with this situation in the immediate vicinity.

To JJ and Malachi, this life will seem like a perfectly normal part of the spectrum.

And perhaps that's what I've enjoyed most about this week of looking through the eyes of our special needs children's siblings. It takes years for it even occur to them that their siblings are different or that their family is abnormal. To them, it is just life. And it is a good one.

This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10. This week we heard stories from all over the blogosphere:

Monday: Announcement and link-up
Tuesday: Outrageous Fortune: To Typical Twin, Disability is Never Weird or Awkward and Why You Should Think Twice Before Finding Disability Inspiring.
Wednesday: Team Aidan: Having a Special Needs Brother is 'Awesome,' says 13-year-old and These Broken Vases: The Typical Sibling AKA The "Normal" Sister
Thursday: Bringing the Sunshine: When Both (or Neither) of Your Kids are The Other One
Friday: The Fisch Tank: Matters of Severity

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

Matters of Severity (post hop)

2013-04-12T11:00:00.003-07:00

Jenny Fischer over at the Fisch Tank is our last featured blogger during our so-called Special Needs Sibling Week. Her identical twin daughter, Cici, had an acquired brain injury very early in life and is nonverbal and is dependent for most life functions. Her big brother and twin sister still just see her as a sister, though.

Jenny asked her kids what they thought about Cici, with pretty funny results:

Question 3: Do you like having Cici as your sister?

Max: Yes.

Penny: Sometimes. Well, she lost teeth and has lots of money from the tooth fairy and I haven't yet.

Head over to her post today Matters of Severity!

This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

When Both (or Neither) of Your Kids Are "The Other One" (post hop)

2013-04-11T07:55:00.002-07:00

So far during our week-long celebration of Special Needs Siblings we've turned our focus to the "normal" kids in our families and seen through their eyes that our special needs kids are normal too.

But what about when both of your kids have special needs?

Such is the case with today's featured blogger, Andi Sligh of Bringing the Sunshine. Andi's daughter has cerebal palsy and her son has Down syndrome.

Head over to read When Both (or Neither) of Your Kids Are "The Other One" a marvelous post about the acceptance and love that these two share for each other and how each is the "typical" one at times.

As a final note, scheduled blogger Love That Max is using today's post to send prayers and love to Kate of Chasing Rainbows whose son is in critical condition in the hospital. Please join her at The Power of Pixels and Prayers: For Gavin and Kate With Love.

This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

Two Sibling Posts to Hop to Today!

2013-04-10T12:00:00.000-07:00

The schedule for this Special Needs Sibling Week has switched up a little bit.

Yesterday, you read two posts from me:

To Typical Twin, Disability is Never Weird or Awkward

and

Why You Should Think Twice Before Finding Disabilities Inspiring.

This morning, I featured a brother's article in Pediatric Nursing m agazine and asked you to head over to his mom's blog to read the very funny and honest "From the Rooftop."

This afternoon, you get to visit Ellen Stumbo's blog These Broken Vases to read about her oldest, the typical sibling of a sister with Down syndrome and a sister with cerebral palsy.

"Because of her sisters, she is one of the most accepting and understanding kids I know. I love her heart of compassion, and how well she "gets it" when it comes to other kids (not her sisters) having special needs."

So go check out The Typical Sibling AKA The "Normal" Sister!

And come back tomorrow when we have another double-header scheduled from Love that Max and Bringing the Sunshine.

This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

Having a Special Needs Brother is "Awesome," Says 13-Year-Old

2013-04-10T08:00:00.000-07:00

Liam, now 14

I wonder a lot about what our family life will look like in a few years. You might have read my musings about The Unusual Ways Disability Affects a Non-Disabled Twin, the personality traits I see emerging in JJ and how his sibling's disability will affect him in years to come.

So it was with great interest that I read a fellow cerebral palsy mom blogger's post about her 13-year-old's editorial in a national magazine, Pediatric Nursing. (Wa-hoo! Go Liam!)

I highly recommend this article, it's funny, sweet and wise beyond his years.

Liam wrote of his brother Aiden (11 years old, non-verbal, seizures, power chair) that: "To me, even from the first moment I laid eyes on him, he seemed normal." Here are some more of my favorite quotes from the article:

"For me, (his disability) meant that there were lots of strangers in my house and invading my space while they played with my brother."

"At (7 years old), having Aidan as a brother seemed awesome. He was giggly most of the time, and I would never fight with him. It also seemed pretty cool to go on doctor visits and get stickers all the time. To most kids, the hospital may seem scary, but when I first went to the emergency room to get a splinter removed, they had free drinks and a cool goldfish tank. What was not to love about the hospital?"

"Some people in public have what I call “Excessive Staring Syndrome (ESS).” People affected by this afflic- tion can show these symptoms: staring at people in wheelchairs because they are different, staring at anyone who is different, and quickly looking away if someone sees them staring. When I was a kid, this never really bothered me, partially because I never knew that people were looking at him and partially because I didn’t realize that they weren’t staring at him because he was so handsome."

"If you keep someone locked away from society, when people do see them, they will stay away from them like they have a contagious disease. However, when you let children and adults talk to the special child and get to know them, suddenly you have an accepted child."

"Some of the best parts about being his brother are that I get to be close to him and support him through everything he does."

"I don’t feel like (accessibility issues) takes away from our being a happy family; all you need for that is time together."

Please hop over to this bright young man's mother's blog to read her post "From The Rooftop" today for Special Needs Sibling Week!

This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Read Tuesday's posts To Typical Twin, Disability is Never Weird or Awkward and Why You Should Think Twice Before Finding Disabilities Inspiring.

Come back tomorrow at 8 a.m. for a post from Bringing the Sunshine.

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

Why You Should Think Twice Before Finding Disabilities Inspiring

2013-04-09T20:00:00.000-07:00

I want to have an honest conversation about "inspiration" and disability.

Be forewarned: this could get sticky. But I think it's important to have these sorts of conversations, even if we don't quite know yet how to say what we mean. It's even important for me to have this conversation even though I'm not a member of the disabled community and can't speak for them.

I started thinking about this in ernest after I read this post from a woman talking about the Paralympics and how proud she was of the athletes but also how nauseating she found it when we congratulated ourselves on finding them so inspirational.

"When you say that we’re inspiring, whether we’re doing ordinary things like getting groceries or taking public transit, or extraordinary things like developing groundbreaking medical technology or competing in elite athletic events, you’re othering us. You’re saying we need to be singled out as remarkable because of our disabilities, and it pushes us further to the margins."

I also liked this tweet she quoted about why the "inspirational" word can get under people's skin:

"@vworpvworp: It objectifies the hard work I've done, that my community has done, without challenging the attitudes that make it hard."

It got me thinking of the mixed emotions I feel when people tell me they could "never" do what I do. I feel a sense of pride, but I also feel it "others" me to a place where they have no right to relate to my struggles and I am so far beyond help that I could never relate to theirs.

These emotions started pinging around when I got forwarded this video about a dog and a girl with Down syndrome interacting.

(video)

It's all cutesy and soft focus, but I couldn't help but feel like "umm… it's a dog playing with a baby. Cute. But nothing extraordinary." I figured I just was being grouchy and moved on.

Then this video started flooding all over my Facebook feed:

(video)

It's a story about two brothers who compete in races together. Why is that special? Because one of them has severe cerebral palsy so the able-bodied brother pulls him in a bicycle cart.

I'm not saying this video isn't inspiring. There are a lot of awesome things about these kids' story: brotherly love, perseverance, the notion that winning is not as important as doing something together.

But it reminded me of this other video of twin sisters I saw a while back.

(video)Twins Bond in the Gift of the Other: Hailey is There for Olivia, Born with Cerebral Palsy and Epilepsy

In both of these stories, I got the funny feeling like the person with the disability is almost a prop, not a real person with their own side of the story to share. Instead they are presented as this negative force on the family who is bravely overcoming it, like a natural disaster.

This is where it gets sticky. Because, as I've argued before, a disability is a hardship for the entire family and white-washing over that is to deny a basic truth. I also agree that disability is interesting, and a story about a person with a disability doing something is often more poignant than a story about a typical person accomplishing the same thing.

So I'm not arguing that we should just be "disability-blind." But take another look at those videos. What is it that we find truly stunning? What is so beautiful, remarkable and worth sharing about them?

I'll tell you. It's that in each, the dog/the brother/the sister is very naturally and effortlessly treating the person with a disability with exactly the same amount of love and respect as they would were they typical.

That is such a foreign and awe-inspiring concept to those of us who did not grow up around people with disabilities. Before I had Malachi, I was very nervous about what exactly it meant to have a disability and how people with disabilities would want to be treated. For the most part, I ignored them, thinking that I was doing them a service by not staring or singling them out or expecting them to tell me their life story because they happened to be visibly impaired. And perhaps for some that was appropriate. But I certainly didn't do it because I felt comfortable around them.

In a segregated school system, I rarely interacted with people with disabilities as peers, so I didn't develop the necessary familiarity.

Imagine, therefore, having JJ's perspective. Malachi has always been his brother and has never been able to move around like he does. I doubt it has ever crossed his mind that Malachi could or should move like that. To JJ, Malachi is just his brother, no more, no less.

(video)

Now. How did that video make you feel? Was it just cute? Or was it "inspiring"?

When we make someone "inspirational" are we ultimately doing them a service?

Or are we putting them on a pedestal without working to figure out why they need to be raised up in the first place?

I snuck this in as a bonus post to as part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Read this morning's post To Typical Twin, Disability is Never Weird or Awkward and come back tomorrow at 8 a.m. for a post from Team Aidan.

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

To Typical Twin, Disability is Never Weird or Awkward

2013-04-09T08:00:00.000-07:00

JJ is just an extraordinary kid. He's bright, funny and playful. He's fiercely independent, adventurous and friendly.

He calls everyone he meets "Kid" or "New Friend." He doggedly attempts to connect with these new friends. His favorite strategy is to mimic whatever they are doing. For children under a certain developmental stage, this totally works. They think: "This guy thinks I'm awesome!" For children over a certain developmental stage, this is off-putting. They think: "Is this guy making fun of me?"

Even when rebuffed, JJ shrugs it off and tries different tactics. There was only one time I can remember that he gave up. One little girl, about 18 months old, would make an obnoxious screeching noise every time he came near and tried to talk to her. He eventually came over to me and said: "Different new friend, please?" Even then, a few minutes later they were playing air hockey together and cracking up about the sound "DA-duh," which they repeated back and forth several hundred times.

The other day we were at IKEA and a 10-year-old girl walked by. He pointed to her and said: "New friend walking." When we were in a hospital waiting room, he immediately crawled over the chairs to smile at and talk to a "new friend" facing the windows in a wheelchair.

To him, disability is not weird or awkward. Even when I think I've fully assimilated into the disability world, he will surprise me by being totally fine with something that I still have a hang-up about. We got a new walker for Malachi and still had a borrowed walker for a little while. JJ immediately adopted it as "his" walker and motored around in it whenever Malachi was in his. It is, obviously, a fun and liberating toy for Malachi and so, of course, JJ wanted his own.

Being a sibling of an extra-needs child is rough. It's just a fact that the other one gets more attention and special treatment. Recently, JJ started asking for "JJ appointments" since we are constantly going to "Malachi appointments." Often, he insists on bottles he doesn't need anymore or other special foods that Malachi is still allowed.

But JJ has risen to the challenge of being Malachi's twin over and over again and I know he will continue to. The biggest reason why? HE doesn't consider it much of a challenge. He loves his brother and — in a very deep way that will inspire me for the rest of my life — doesn't see anything wrong with him.

Here are some more of my favorite posts about JJ (aka Jaden):
The Return to a Normal That Never Was
The Unusual Ways Disability Affects a Non-Disabled Twin
One Twin's Parents are Nothing Like The Other's

This post is part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Stay tuned for another post at 8 p.m. (Pacific) and come back tomorrow at 8 a.m. for a post from Team Aidan.

Do you blog? Participate in Special Needs Sibling Week by linking up your post below:

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present!

Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.

Announcing a Week to Celebrate the Siblings!

2013-04-08T08:41:00.000-07:00

One of the things I mourned the most about Malachi's diagnosis of cerebral palsy was that he and his identical twin would never be identical. No one would confuse them for each other, no one would ask me how I tell them apart.

But I also mourned for Jaden. I knew that this diagnosis would also affect him tremendously because we, his parents, would always be spending an unequal amount of time and attention on his brother.

And so it goes.

But in talking to another blogger about how amazing our "other" kid is, I thought: "Gosh, wouldn't it be great to take some time to talk about THEM on our blogs?"

Many other bloggers agreed, so this week we are taking a chance to recognize the siblings of our special needs children. April 10 is National Siblings Day, so we are calling this Special Needs Sibling Week. We will use our blogs to write about "The Other One" (as Kate Strohm calls herself in her instructive book on being a sibling of a person with special needs). Here is the schedule:

Monday: Announcement and link-up

Tuesday: Outrageous Fortune

Wednesday: Team Aidan

Thursday: Love that Max

Friday: Fisch Tank

Saturday: Bringing the Sunshine

Sunday: Recap and thanks

If you blog about your special needs kid and want to join us in our celebration of The Other One in your household, take a minute to link up your post using the following linky. Then come back every day this week for the next blogger in our series!

My Sons' Disabilities Mean I'll Never Be 'Just a Mom' (guest post)

2013-03-25T07:00:00.000-07:00

A fellow mother of twins wrote this beautiful essay about how her sons' disabilities have altered the course of her life and her identity. As today, March 25, is the first National Cerebral Palsy Awareness Day (or Cerebral Palsy Pride Day, depending on how you look at it) we wanted to share it with you.

Enjoy.

My Sons' Disabilities Mean I'll Never Be 'Just a Mom'
by Melissa Waller Longshore

What does cerebral palsy mean to me? I've decided I could sum it up in one sentence and that would be: I am not just a mom.

I went to hang up pictures in the library for Exceptional Children's Week and I was stopped by someone who wanted to know if I worked for the school system. I said: No, I am just a mom. However, once those words left my lips, I realized how untrue they were. Since my boys have cerebral palsy, I will NEVER have the opportunity to be just a mom. I will always be MORE than a MOM.

I will be my boys' Physical Therapist. I will stretch and push their little bodies to the max, all while hoping that my efforts are not in vain.

I will be an Explorer searching through the vast horizon of possibilities, looking for answers to questions that have yet to arise.

I will be a Doctor that rivals the best with knowledge of most medical terminology and an understanding their applications.

I will be the Navigator of a schedule that has to be seen to be truly appreciated. Where every day is filled to the minute with something that needs to be done.

I will be an Advocate for quality medical care and more educational resources.

I will be a Warrior fighting against the word can't.

I will be an Athlete, pushing the chair and lifting the weight.

I will be a Caretaker, feeding meals and handling bodily needs.

I will be a Crusader for more compassion and acceptance.

I will be a Researcher of the untried and the alternative, in hopes that something discovered today will benefit all tomorrow.

I will be a Farmer, planting seeds of hope to help other parents with children like mine.

I will be a Nurse, administering medication and gauging the results.

I will be a Builder of a home to fit their needs.

I will be a Visionary of what will be and could be, not what is.

I will be a Teacher to others, making them aware of cerebral palsy and its effects.

I will be a Mountain Climber, motivating my children to stretch past their limitations and to climb to new heights.

I will be a Preacher telling all that one's faith... belief system... God... is powerful and able to get you through the most difficult and challenging aspects of your life.

I will be a Nurturer, comforting my children when they fall, need support or are hurt by the harsh reality of how they will function in this big world.

I will be a high-powered Negotiator at IEP meetings.

I will be a Money manager finding ways to make the dollar stretch and having a great understanding of insurance and government waivers.

I will be a Comedian, laughing when others would cry.

I will be a Thrill-Seeker, searching for ways to include adventure in our lives — while running on coffee and adrenaline, yet living life to the fullest despite any challenge.

I will be an Investor in the promises of tomorrow, while reaping the small rewards of today.

I will be a Conductor orchestrating the operations of my family.

I will be a Writer, writing about all of this.

Yes, I am the CEO of this and so much more.

So, you see, as a result of cerebral palsy, I guess I will always be more than a mom. I will not be better or worse than the typical mother. I will have the same virtues and shortcomings. Yes, I will be the same in so many ways as others — possessing the same hopes and dreams for my children — but undeniably different.

I guess I will be special too — just like my children.

There are times when I wish I could be "Just a Mom," too.

However, most days, I love being More Than a Mom because the rewards are great. I have gained greater insights about what is important in life and what is not. I appreciate the simple things. I see value in every milestone. I see the beauty in just being — not what one has or is capable of achieving.

I see the power of people. How someone so small (a child with cerebral palsy) can impact my world and so many others' worlds in a positive way. I feel I am not alone because there are many, many More Than a Moms just like me. Their children are not defined by their challenges. These are moms and children who choose to supersede their circumstances.

No, I don't work... I don't get paid. However, I have many jobs. I guess that this is the only way I can articulate what cerebral palsy means to me.

It makes me More Than Just a Mom.

I hope you connected with this post no matter where on the parenting "spectrum" you are! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

Dear Person Whose Job It Is To Call Me Back — You Suck.

2013-03-19T17:09:00.003-07:00

Dear Person Whose Job It Is To Call Me Back,

You suck. You are really, really awful at your job.

I don't care if you are a scheduler for a therapist, or a doctor, or a social service program. It doesn't matter who you are, a key function of your job consists of making appointments and yet you're — staggeringly, mind-bogglingly — terrible at it.

I know I should be sympathetic to your plight. After all, since I've yet to meet a single competent scheduler among dozens of offices, there must be some Scheduling Guild secrets that I am not privy to. Perhaps basic calendar technology has yet to reach your office. Maybe your boss regularly uses your phone line to make 1-900 calls. Probably your desk is on the plains of the Serengeti where regular rhinoceros migrations make such calls impossible. I can see how that would be difficult.

But you know what? I don't care. I really freaking don't. Because I am quite certain that you haven't given the slightest thought to the amount of effort it takes me to call you. Allow me to enlighten you, since you are obviously not doing anything else right now.

The process starts when the thought that I need to call and make an appointment swirls to the forefront of a near-constant whirlwind of needs, obligations and decisions about how to approach my son's disability. Then I need to find the appropriate number, which is never the number on a website or the caller ID from the last time you called. (Of course not. That would be way too convenient. Thus breaking the Scheduling Guild code of conduct.) Then I need to carve out a time in my day that is during business hours yet not during times when my nearly napless children are awake and eager to use any excuse to scream at me.

Once I have met all of these requirements, I get your voice mail. Of course you are away from your desk at 10 a.m. on a Tuesday. That makes sense. The rhinos must be on the move. No matter, I will wait for you to call me back. You know, because that's your job. Somebody is paying you to do that, so clearly you will do it at your next available opportunity.

But here's the thing: You never freaking do.

A week goes by, maybe two, and I realize as I am trying to fall asleep that you never did call me back and now I have to start the process all over again. You get me every time. We've played this game dozens of times now and yet I still always assume that you will call me back because I left you a message. I must be legendary at your Scheduling Guild meetings. "Susan! You're never going to guess who called me!" "No, not her! Again? That's too outrageous. When will she learn?"

Never. The answer is never, Person Whose Job It Is To Call Me Back. I will never learn that you won't call me back because I find it incomprehensible.

I find it incomprehensible not because someone is paying you a decent living wage to do something as simple as picking up a phone and typing my name into your clinician's calendar. Not because could you be very easily replaced by modern calendar software that would allow me to make my own appointments 24 hours a day. Not even because you ought to know how difficult it is for me to find time to call you. No, Person Whose Job It Is To Call Me Back, the reason I find it so incomprehensible is this:

A little boy with scarred brain tissue needs some help. The help is most effective the soonest it can possibly be given — time that is measured in days, not weeks or months.

You are the gatekeeper to that help. And yet, through your laziness or incompetency you are denying him access. In some cases, you are literally sentencing him to more suffering.

So I guess what I'm really saying, Person Whose Job It Is To Call Me Back, is, unless you are currently being dragged away by stampeding rhinos, you really need to pick up the phone and call me. Like, right freaking now.

Thanks,

The Lady Who Will Never Learn

I hope you found this rant cathartic! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

Why I Love My Cerebral Palsy, a Q&A with Nick Ryan

2013-03-13T17:47:00.000-07:00

On this journey with my son's disability, I've had the pleasure of getting to know Nick Ryan and his unusual perspective on cerebral palsy. Ryan is training to become a special needs teacher in Ohio. He experiences mild ataxic cerebral palsy and says he wouldn't change it even if he could.

When March came, he noted with annoyance all of the green Cerebral Palsy Awareness Month ribbons flooding his Facebook feed. I wondered if we could instead call March Cerebral Palsy Pride Month and thought this Q&A might be a good first step in challenging some assumptions people have about cerebral palsy.

Your Facebook profile photo is an "I ♥ CP" logo in the style of "I ♥ NYC." What do you ♥ about cerebral palsy?

I love CP because it is part of me and I love myself. And I love others who have it and CP is part of them, so I love it. Like a friend of mine, who is a mom of a little boy with CP, once said: “If you going to love someone who has CP, you have to love the CP itself.” CP plays a major part in shaping a person who has it. I would not be the same person without it. I also find great beauty in CP — the way a person with it walks, the way a child with it smiles, the strength and courage we all tend to have — it's just beautiful to me.

What are you most proud of about your CP?

I'm proud of my CP because it makes me part of the diversity of the human species. I feel it is important to have many different types of people on the earth. In my view, it is important to be proud of who you are and what you are. This is especially important among minorities. Take a look at African Americans or Latinos or GLBT people — they did they not make any real progress towards equal rights until they developed a sense of pride and community among themselves. I feel that is really missing among people with CP and that is really holding us back when it comes to gaining equal rights.

How has CP enriched your life?

It has allowed me have a different perspective on things. I have to work a little harder to get things, so I value them more. It has also given me a strong sense compassion and empathy. CP has allowed me to meet some great people. I love meeting other people with CP — listening to their stories, their experience — it really does something for me.

How do you experience CP? What does it feel like and what is your level of function?

I find describing the CP experience to be difficult because it is all I have ever known. It would be like if I asked a typical person what it is like to be typical, they would find it difficult to put it in words that I would understand because they really don't know what my life is like. CP is just life to me. If you want to look at it from the perspective of functionality, I am relatively high-functioning compared to others with CP. The area where I am most affected is my speech; I have the typical CP speech pattern. I am able to walk independently, my CP does affect my gait somewhat. I have issues with my fine motor skills and continence.

Are you against a cure for CP? Why?

Yes, I am against a cure. When people say they want to cure CP, to me it is like saying that you want to cure Judaism or cure people of being African American. It is the elimination of an entire group of people just because they are different from the so-called norm, a group of people that contributes to the richness and diversity of this world like all groups of people. Also, people underestimate the psychological impact a cure would have on a person with CP. You are changing a major part of who a person is. A person who would received this cure would have to create an entirely new identity.

What is your biggest pet peeve about the way society at large talks about CP?

What really drives me crazy is to hear CP talked about like it's this nasty, evil illness like AIDS or Cancer — something to be hated, something to fight. After almost 30 years of living with the condition, I can tell you it's nothing like that. This type of talk is not only untrue and annoying, it is dangerous. Children with CP hear this and feel like they are broken, that they have to do everything they can to overcome their CP. So they engage in an endless war against their own bodies that is both physically and psychological damaging. Their parents, pressured by the same societal view of CP, encourage this and in some cases force the child into this. The parent is made to feel that they are not being a good parent if they don't push their child to gain as much abilities as they can. The end result of this is an environment that is unhealthy for all involved.

How do you think you would react if you had a child diagnosed with CP?

You don't really know how you going to react to a situation like that until you're actually in the situation, but I don't think it would be a big deal to me, I've been around CP and other disabilities all my life — they are normal. Of course I would want to make sure that my child felt loved and accepted for who they are, whether they had CP or not. If my child had CP, getting them a way to communicate would be the top priority, whether it is through speech or an AAC (Augmentative and Alternative Communication) device. I would want most of his/her therapy to be play-based and child-directed. I would let the interest of my child guide what we do as far as therapy. I would make sure that he/she had what they needed to get the most out of life, whether that be a wheelchair, walker or whatever. Most of all I would want to be happy, happy about having CP, happy about what they are doing with their lives, just happy.

How do you think you would feel if you had a stroke or brain injury now and lost some of the function you currently have?

This is another question I can't give you a for-sure answer on. I'm sure there would be a period of adjustment while I would get use to my new situation and I'm sure I would feel sadness for my loss. But over time I think I would adjust to things and find a way to be happy. That just the type of person I am; it is in my nature to try to make the best of things.

What would you most like people to know about what it's like to live with CP?

That the quality of life of person with CP is more greatly impacted by the environment they are in. If you put a person with CP in an environment that is loving and accepting, that has proper accessibility and technology, they going to have a good life no matter what functioning level they are on. Instead of changing people with CP, we should be focusing on changing the environment.

I hope you found this post thought-provoking! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

The Paradox of Overwhelming Blessings in the Wake of Tragedy

2013-03-10T13:52:00.000-07:00

There is a strange paradox in having something terrible happen to you. The paradox is that, as a direct result of the terrible thing, many wonderful things happen. I honestly can't quite sort it out.

I know, logically, that if someone offered me a mixed bag of good things and bad things, I would happily accept, taking out the bad things and leaving them there. Why should I carry around the bad things just because they happened to get mixed in? But an illogical part of me still clings to the badness of Malachi's diagnosis, the certainty I felt in the beginning that my life would be practically unbearable forever after.

And it's not just that, either. If his disability isn't sad and difficult, would the justification for receiving the good things from our community disappear?

And, oh God, the good things. When I think back on the past year, I'm simply staggered at the number of extreme kindnesses directed at us. So much so that I think, guiltily, well, it's not that bad, as if some sort of cosmic profit-loss table has tipped too much in our favor and any day now people will decide I'm running a racket and demand their stuff back.

People have come out of the woodwork offering us support. Friends, unknown relatives, complete strangers, enemies. It has been humbling and enriching in ways I could have never imagined. Somehow Malachi's diagnosis has made giving to our family possible in ways that it just simply wouldn't be if he were typical. I see friends with typical twins struggle with some of the same stressors and worries that we have and yet no one offers to pay their medical bills or buy airplane tickets or give free childcare. Many of those things we still would have needed had Malachi not had a brain bleed, but I doubt such a "normal" life would have inspired so many to give so generously.

I hope I'm not too out of line to suggest that these selfless acts have enriched our donors' lives in addition to our own. The sense of connection and empowerment they feel in fulfilling our needs was made easier by the extremity of Malachi's needs. If he didn't experience disability, neither we nor the donors would have experienced this font of love and generosity.

But then I remember that the majority of the money we've been handed has been towards his development, and I despair that it's all been for naught. Yes, he is verbal; yes, he is remarkably bright; yes, his fine motor skills have improved enormously; yes, he adores his therapy sessions; yes, his movements appear increasingly graceful and energetic; and yes, I attribute much of this to his many Anat Baniel Method lessons. But will he ever walk or — for Christ's sake — even SIT?? That is the question that burns in my mind and makes me doubt whether I have shepherded our community's resources wisely towards an unproven method of therapy.

To be sure, the process — both in receiving such generosity and learning so much about how the brain (and therefore, humanity) works — has been uplifting and joyous and beautiful. But the outcome is still so murky and it is that which keeps me up at night, wondering if this story will end in tragedy or triumph.

And yet.

I believe that what I am slowly, slowly learning is that life is the process. If the process is good, that's all there needs to be, because there is actually no such thing as an outcome. Only never-ending processes, on and on, until the end of time. The process that began with Malachi's diagnosis was a catastrophe but kept right on proceeding into blessings, and that, that is the story that really matters.

I hope you found this post thought-provoking! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

Natural MiraLAX Alternatives for Constipation (especially for Children with Special Needs)

2013-03-06T13:57:00.000-08:00

MorgueFile

Dealing with constipation seems to be a perennial topic on forums and message boards for parents of kids with special needs. In responding to a recent query, I realized I've developed an arsenal of tips and tricks over the last two years. I continue to add to these on my page Tips I Wish I'd Known Sooner but thought this deserved its own post. Enjoy!

• We have mostly been able to manage it with diet changes:
- Prunes, Peaches, Pears, Papayas (juiced or pureed, remember The Four Ps!)
- Coconut milk (really should be called coconut cream, comes in a can like Thai Kitchen)
- Pumpkin (Make a dessert with pumpkin, coconut and sweetener, yum!)
- Chia Seeds, sprinkled on top of other foods (put in a pepper shaker and call them "sprinkles," kids love it!)
- Fewer carbs and dairy
- Probiotics powders (We use Primadophilus for Kids)
- I've also heard good things about FruitEze, a fruit paste, but haven't gotten around to ordering it yet.

- Colloidal Minerals, such as those used in the Preemie Growth Project, are giving lots of my friends' kids relief, but sadly Malachi has yet to have that reaction.

• If he's been straining for a day or two with no results, it's time to bring out the big guns.
- Glycerin suppositories are natural and mostly work by having something there to send a louder urge to the brain. Cut an adult one in half for little kids, even safe for babies, but ask your doc.
- Glycerin enemas — very fast relief!
- Magnesium sulfate (aka Epsom salt) is also a good laxative that has the added benefit of improving the body's ability to absorb nutrients and easing muscle contractions — perfect for cerebral palsy! I tend to add epsom salt to Malachi's baths so this is sort of a regular thing for us. This can be TOO effective so be careful your child doesn't drink the bathwater and that you don't put too much in. We do about half a cup in a bathtub of three inches of water.

• There are also movements you can use, such as the Wind-Relieving Pose in yoga, and a technique we learned from an acupuncturist that involves pressure points that worked very well when Malachi was a baby, but less well now that he's older and the stomach muscles are stronger. He still thinks it's hilarious though and calls it "poop massage."

• Why shouldn't you just use MiraLAX or other petroleum-based laxatives? Glad you asked. (Spoiler alert: The FDA says they contain neurotoxins and block the body's ability to absorb nutrients. Yikes!)

Do you have any tips? Questions? Issues? I'd love to hear from you in the comments below!

I hope you found this post useful! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

Baby Elephant (Silent Sunday)

2013-02-10T13:38:00.000-08:00

Our local zoo just had a baby Elephant, Lilly, arrive a few months ago. (A two-year gestation period followed by the birth of a 300-pound baby — no thanks.)

I was having a really rough day last week and decided the only thing to do was pack up my kids and go look at the baby elephant. It didn't fix any of the things in my life that I was upset over, but it did make me feel better, and that's all I needed.

Why Doctors' Appointments Are My Own Personal Hell

2013-02-04T16:09:00.000-08:00

I hate going to Malachi's doctors' appointments.

Hate.

They are like my own personal hell, a perfect storm of circumstances to drive me completely nuts.

First of all, I have to go to them with the twins. They are screaming and wildly frustrated two-year-olds who want to grab everything in sight. No doubt, they also pick up on my nervous energy and act even worse than normal. While all this is going on, I have to give a full, brief and accurate oral report on all the various facets of our care for our son while simultaneously trying not to scorn the established view of things and explain how our alternative philosophy accounts for all of their concerns.

Then comes the worst part. The part when the doctors tell me their recommendations. I know intellectually that this the entire point of a doctor's visit and that they are just trying to help me and give me the tools we need to succeed. I know this. But with every recommendation I feel just a little more inadequate. It doesn't matter that I've turned my entire life upside-down for Malachi's cerebral palsy, traveled the globe in search of the best treatment and raised tens of thousands of dollars for it. There's always something I'm not doing and doctors' appointments are when somebody sits there and tells me that to my face.

The major focus is usually food. Malachi doesn't eat enough of it, which is a big problem, but I just don't know what more I can do about it. While he doesn't eat nearly the varied diet that JJ does, it's not that much different than what I ate as a kid. (Another reason why doctors appointments are my personal hell: all deficiencies in Malachi are fair game for treatment. Other people's kids just get to be picky eaters, but because the pickiness is added to his CP, it's a Big Deal.) And he does eat. Unlike many other kids I know, he would gladly down calorie-rich PediaSure all day long.

Adding "Make wholesome, fresh, nutritious baby food from scratch" to my to-do list — which includes "Single-handedly make, market and distribute a profitable book series," "Keep clean, organized and well-run household" and "Raise two boys into well-rounded and self-actualized young men" — just seems impossible.

I also hate that they call everything into question. I've already gone down this path and have done exhaustive research on it. And yeah, you should always check your assumptions and you never know if a different way would be better... but I'm already so far down this path. Imagining reversing all the monumental changes I've had to make in my thinking and my life just seems too daunting.

I guess the problem is that my entire life has become Malachi's CP. I read constantly and widely and I already know what the doctors are going to say and why, but I still don't agree with most of it.

All I want is a doctor that I can ask questions to, one who "gets" where I'm coming from without my having to explain the last two year's worth of my understanding about how the brain learns. They would get it, I'm sure, but it would take time and energy that I just don't have.

***

BTW, these are a bunch of links to awesome things that might help you when you feel like giving yourself a temper-tantrum. Thanks to my Facebook friends for contributing them when I was having a rough day. I was going to incorporate them into the above post. But then I didn't. One more thing to not cross off the to-do list....

http://www.ahaparenting.com

http://www.lindasdailylivingskills.com/2010/11/just-right-challenge.html

http://coreparentingpdx.com/2012/when-mama-has-a-bad-day/

http://specialchildren.about.com/od/stressmanagement/tp/How-To-Give-Yourself-A-Temper-Tantrum.htm

I hope you connected with this post! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

How I Published a Board Book

2013-01-24T19:56:00.000-08:00

Photo courtesy Jessie Kirk Photography

It was surprising to me how quickly I went from "wannabe" publisher to "accomplished expert" after I published my children's board book: "Dark & Light: A Love Story in Black and White."

As local author/publisher Dan Deweese told my now-famous friend Laura Stanfill and me at the last Wordstock literary festival in Portland:

"It's only crazy until you do it."

I've now had half-a-dozen people write and ask me for the nuts and bolts of how I published the book, so I've decided to compile this here FAQ. If you have additional public-friendly questions, don't hesitate to put them in the comments and I'll answer them. If you have more private or lengthy questions, then I think you will agree that my expertise is worth something to you! Our interaction would therefore be called "consulting." Write me an e-mail, and I'd love to set up a phone appointment! (Rates are reasonable and barter is often acceptable.)

Why don't you have a literary agent?
It's not as easy as calling up an agency and going: "Hey, mang, gimme one-a-dem agents y'all got." Getting a good agent is just as hard as — if not harder than — getting a good job. Not only do you have to have the right idea and the ability to execute it well, you need to present it to the right person, in the right way and have the right qualifications. This all requires a lot of time, energy and relationships that — because of my need ASAP for cash for Malachi's medical needs — I decided were better spent doing it myself.
That said I would love to have an agent and I hope to one day realize that dream.

Why didn't you publish your books traditionally?
Well, you almost always need an agent to publish a book traditionally, so see above. But also I knew that I wanted the Dark & Light series to be baby-friendly and therefore a board book. As agent Jennifer Laughran mentions here, board books are almost never original stories. They are either smaller, more-durable versions of old classics or concept books (colors, numbers) designed in-house. "Breaking in" to the traditional publishing world with a board book is practically unheard of.

Why did you create a whole publishing company instead of using a POD (publish-on-demand) service?
Again, because it was a board book. I used an POD service for my novella and it was SO MUCH EASIER. I would have loved to just do that instead of making my own company.

What did you have to do to set up a publishing company?
Mostly the same things you'd have to do to set up any business — business license, business accounts, QuickBooks for bookkeeping. I also took a free class through the local Small Business Association, but it was mostly not relevant because I don't have a public "store" and I don't have employees.
I also had to figure out shipping supplies and procedure, and tracking orders received and orders sent. This is actually a lot more difficult than I gave it credit for.
Then there is managing the website. A really nice guy at All Media Bainbridge helped set up the shell and added a shopping cart feature, and I used the skills I've gained from this blog to do the rest.
UPDATE 1/28/13: A few other things I forgot to mention. I had to get ISBNs and barcodes from Bowker and register my lovely work of art with the US Copyright Office.

What printing firm did you use?
I did a lot of research at various stages. I'll save you the details, but I ended up with CM Printing and I was very pleased with both their service and product. They are not fluent in English, but they know their stuff and are perfectly able to convey that knowledge in English. CM Printing has an MOQ (minimum order quantity) of 500 copies and many options. They can let you know how much it will cost to print your product, but they print it exactly as sent to them. No design work. You need to know what terms like grayboard and CMYK mean. They are a printer, not a publisher.
UPDATE 1/28/13: Proceed with great caution with using CM Printing. They seem to be in a legal dispute and it is unclear who the "real" CM Printing is. I have taken down the link to their site pending further investigation.

Why didn't you use an American printer?
I looked into it, but again it's the board book issue. No American printer could make a board book for less than anybody would buy it. The only ones out there are custom board book printers that are, for example, $20 for a single copy of a book with your baby's name in it, etc.
I've also heard there are affordable board book printers in Mexico, but I wasn't able to find them. China was just fine.

How did you raise capital?
I used Kickstarter. You can read my tips about how I managed that fundraiser here.
I think crowd-source funding options are AWESOME for launching a product because you can see if people will actually buy it before you have a massive order sitting in your garage. It also turns sales into more of an "event" with a time limit and lets you offer really cool rewards, like printing their name in the book. I highly recommend it.
However, I do not recommend Kickstarter itself. They have a weird rule that if your product's profits go to a good cause, you are not allowed on their site. They sent me a stern e-mail literally hours before the end of my campaign saying that I was "blatantly violating" their policy. They still let me go through with it, but they never made me a featured product or a "staff pick," even though I was almost constantly in the top-three most-popular products in my category. Since they have a bizarre bias against products that help people, I am planning to use IndieGoGo, which is not only less restrictive but cheaper, for my next book.

Was it worth it? You know, like, monetarily?
Hmm... to be determined?
Unequivocally, yes, it was worth it to me for a wide variety of reasons both personal and professional.
However, we have yet to turn a huge profit on the book. Most of our momentum came from Kickstarter and after Christmas, sales stopped dead. We have plans for more marketing and you never know what tomorrow will bring, so I have hope and am taking the long view. But if my time were worth anything on my balance sheets, then, no, I don't think I can say it has penciled out yet.

Hey, what are your qualifications/experience anyway?
I was a reporter and editor at small community newspapers for three years before the complications with my pregnancy led me to resign. During that time, and in college as a journalism major, I learned a lot about creating and selling print products, including writing and visual design, not to mention media relations. While this hardly made me an expert in the book publishing world, it did mean that I wasn't exactly a fish out of water.
Does this mean you can't do it if you have zero experience in publishing? No, but don't expect to be able to dive into the deep end right away. And if at all possible, you should hook up with someone who does have experience.

I hope you found this informative! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.

Want to Feel Amazing? Start Giving.

2013-01-17T13:01:00.001-08:00

Our family has received so much this year through our fundraiser for Malachi. But one of the best gifts we've gotten is the resultant deep and personal knowledge of how great and powerful it is to give.

A few months ago, I was walking through a Target parking lot and saw a very beat-up-looking car with soap paint on the windows declaring: "Just married!" and "California or BUST!"

With it's hood up, it looked very much like a bust.

My heart went out to the young couple but figured there was nothing I could do. Then I reached into my pocket and found a $20 bill. I almost never have cash on me so I took it as a sign. I took it out of my pocket and as discreetly as possible, tucked it under their windshield wiper.

My heart was soaring the rest of the day and I wanted to tell everybody how great it felt to do that for strangers. But I stopped myself. How could I talk about it without sounding like I wanted a pat on the back? How could I genuinely convey that this selfless act was in fact really selfish because of the enormous boost in personal power I felt for the rest of the day?

Then, about a week ago, my husband and I were going home after a date night in downtown Portland. As we approached an intersection near the Steel Bridge, the light turned green... and a man with a garbage bag stumbled into the road. The car next to me and I slowed to allow him to pass unfettered even though it was clearly our turn.

I'm not proud that my first thought was that he had pretty nice shoes for a drunk homeless guy.

But as the man reached the middle of the road, he stumbled and fell. And he didn't get up.

I inched forward and asked my husband, Matt, to get out and help him up, which he did. The man from the car next to us had already gotten out of his car.

The lights cycled through and cars backed up as my husband called 9-1-1 and the other driver helped the man get up and cross to the other side. No one honked.

The homeless man refused further help and we went on our way.

As we left, I asked Matt what happened. He said the man had had his toes amputated that day — frostbite? diabetes? — and that was why he was having difficulty walking. We were sad and quiet for a long while. Then I said I wish I carried cash to give to him and my husband wondered if we should have bought him a hotel room for the night.

I think before this year, we would have just thought: "Crazy drunk" and tried to extricate ourselves from the situation as soon as possible. Instead, we left strategizing how we might better help the next person who comes across our path.

Because of the kindnesses shown to us this year on a person-to-person level, we now realize how much more meaningful giving is between individuals. Giving to charities (or, c'mon, let's be honest, intending to give to charities) feels safer, but there is an enormous power is simply seeing a need and answering it.

There are lots of big, ubiquitous charities out there — ones for disabled children, children's hospitals, premature babies, etc., etc. — and despite being very much the type of people those organizations profess to help, as far as I can tell my family has yet to see a dime from them. I think in some ways we've gotten lured into the belief that the small tax boost you get from nonprofit status is worth more than simply giving money directly to people you see hurting.

But maybe that belief is starting to change for others, just as it has for me in the past few months. A few days ago, as I was leaving my bank where I was depositing a check from Malachi's children's book fundraiser, I discovered that someone had stuffed $2 into my driver's side door.

You know how when something bad happens, like your car gets vandalized, and you think with fear and sadness: "Why me? Did the vandal know me personally? Did I do something to piss them off? Or was it just totally random?"

This person's $2 might not seem like much, but the rest of the day I had the same thoughts with joy and love in my heart: "Why me? Did this person know me personally? Did I do something to make them think I was awesome or in need of help? Or was it just completely random?"

Spending the day pondering all of the reasons why I might be worthy of someone's random act of kindness was well worth those $2.

So, sorry, random person. I'm sure you wanted me to spend those $2 on a latte treat or to buy my kids something fun, but I'm gonna blow it on my new addiction:

Giving it to the very next person I see who could use it.

How Seeing Others' Problems Helped Me See Past My Own

2013-01-07T15:57:00.000-08:00

Something my husband said to me has been floating around in my head for weeks:

People's problems fill up their whole lives.

By this he meant that no matter what an individual's problems are, they have a tendency to take up all of his or her time, money and energy — no matter how much of these things he or she has been blessed with. Isn't it strange how that happens? That whether you are single and free, or married with children, or caregiving a child in need of 24-hour medical care, you still have problems and they are massively important to you, take everything you've got and leave you feeling inadequate to the task?

Living in the special needs world, I've been exposed to a dimension of parenthood that most people would like to pretend doesn't exist. I've met parents who have discovered after the death of their developmentally delayed first child at age 11 that their third has the same rare disorder. I've read testimonials of parents who've had to fend off "it's better this way" sentiments while grieving the loss of a severely disabled — yet no less beloved — child with total care needs. I've rejoiced with parents who consider it a miracle that their 6-year-old son can simply lift his head.

Malachi not particularly enjoying what was supposed to be
a fun New Year's Day trip to the snow.

I know that many people look at the subject matter of this blog and recoil. That's not for me, they say and click through. They don't want to come to grips with the reality that brain-injured children are in the realm of possibilities. They don't want to get to know children like my son.

I know I didn't and, in some cases, still don't.

Even two years in to this world, I still catch myself recoiling when I hear particularly horrific stories from elsewhere in Special Needs Land. But I still force myself to look, to watch the videos and do the mental acrobatics needed to see what is the child IS doing rather than what he isn't. It's getting much easier, but regrettably it still isn't automatic.

Part of me looks at those children and says "Thank God." Thank God Malachi is doing as well as he is, and maybe I had something to do with him being on this higher road?

But then I feel guilty about that. It is human nature to compare. It's how the brain works. And it's good — in fact, essential — to be able to see everything your disabled child has going for him. But I try to resist the urge to look at other people's situations and be relieved that it's them and not me. Because I know there are people out there who think the same of me, and I hate it. I know there are friends who use me as a cautionary tale. I know there are people who think their children are doing better than Malachi because they're doing it right and I'm doing it wrong.

Having survived the first two years of extreme uncertainty around the extent and quality of Malachi's brain injury, I know in my bones that I'm no different from those parents. Malachi could have very easily had cognitive impairments, or been a vegetable, or died. Nothing prevented that except the random seepage pattern of blood in his tiny newborn brain.

People's problems fill up their whole lives.

And what about the people I know who don't really have anything glaringly wrong in their lives? Do they seem any less stressed, any more happy? No, not really. This might be crass, but I can't help but notice that these mass shooters are almost always privileged middle-class white men who, by comparison to the rest of society, have everything going for them yet still blame the world for their lives not turning out the way they expected.

I'm sure every father who has held a dead baby in his arms has wanted to firebomb a mall. But they never do, do they? People who have real, serious problems — like whether or not they will eat that day — never seem to be the source of these rampages.

People's problems fill up their whole lives.

I am reading J.K. Rowling's new adult novel A Casual Vacancy. She's an excellent tale-weaver but it's no Harry Potter, that's for sure. I've spent most of the novel trying to figure out what the freaking point is.

But I think I've finally figured it out. The characters' problems fill up their whole lives. One character is even debilitated by imaginary problems that are entirely of his own invention. Externally, the parents have done everything to ensure their children are happy — gotten them into the best schools, made plenty of money, living in an idyllic English village that they are striving to keep "pure." But their children still hate them and hate the village and crave the "authenticity" of crime, drugs and sex.

The political drama at the heart of the novel consumes the lives and thoughts of the main characters. Though, Rowling occasionally shows glimpses of the fact that few people outside of the main characters know or care what's going on in their tiny little town council.

Perhaps I like the book because I reported on many heated small-town conflicts in my journalist days. It was always amazing to me both how little people outside the councils would understand how much power the council had and how important the councilors thought themselves when everybody else couldn't care less.

People's problems fill up their whole lives.

Rather than being depressed that people with objectively "better" or "worse" lives are just as unsatisfied as I am, I feel a little liberated. It means that even if I could change the external things that I so bitterly can't change — my family members' health, my financial situation, my perpetual lack of "enough" time — I still wouldn't be happy.

The very few people I see who are happy are happy from the inside, no matter what their personal circumstances. They make the conscious, daily choice not to be consumed by problems. They see and celebrate the corners of their lives that problems do not occupy. They stop themselves from turning hobbies into chores, from turning family outings into errands. They spend their energy not on the black-hole-like pursuit of "success" but on taking care of themselves, loving people, and helping others with their problems.

This does not seem like an easy task to me. I imagine it takes the same amount of effort, time and focus as any other life-changing goal. But becoming aware of the fact that we are — each of us — already making a choice as to how we see our lives might make it easier to choose the positive instead of the negative.

The Unusual Ways Disability Affects a Non-Disabled Twin

2013-01-05T11:16:00.001-08:00

I'm beginning to wonder at what age JJ will realize that the rest of the world sees his brother as less-than.

And I wonder how he'll feel about that.

I was six years younger than both my brother and sister and continue to carry a rather large chip on my shoulder about it. Even though I am acutely aware of this failing, I can't help but despise when anyone questions my abilities or treats me as less-than. Being underestimated, and resenting it, is deep in my psyche.

So one might think that I would empathize with Malachi, and in many ways, I do. Malachi is functionally "younger" than his twin because of his greatly delayed physical abilities. I can see a dynamic emerging in which Malachi follows along with whatever JJ chooses to do.

But often I think of JJ as the younger one. To the rest of the world, Malachi is deficient, but to JJ he must seem The Chosen One.

Malachi still gets to have bottles, often loaded with fancy sugary stuff like Pediasure, while every day JJ has to cry bitterly into his cup of regular cow milk. Malachi gets to ride in the stroller or get carried around, while JJ is often forced to walk. Malachi gets praised enthusiastically for every 10th bite of food (counting bites has been the only way to keep his interest in eating real food), while JJ eats impressive quantities and varieties of foods, unnoticed, occasionally yelling out his own numbers in an attempt to capture his mother's attention.

JJ (left) pretending to fall asleep in his food, like Malachi did.

Capturing my attention comes in many unusual forms in this house. Jaden will often lean very far over in his high chair until I ask him to sit up straight, like I do to his brother when his poor balance causes him to topple over. Lately, when upset, JJ will fall on the floor and then watch me from his back with calm eyes. If I don't react, he'll say: "JJ fall down. Pick-er up, please. Mama, pick up."

I do. I don't like that he mimics Malachi's helplessness but I understand that he is trying out ways to get the love and attention he wants. And haven't we all felt like we just wanted someone to pick us up off the floor some days?

But it breaks my heart. So many things about Malachi's cerebral palsy is unfair, but the way it impacts his twin is one of the worst for me. His parents are so exhausted from taking care of Malachi's myriad needs, that they never have enough time or energy for him. In fact, when I was in high school, I remember always trying to say "When I have a kid" instead of "When I have kids" because I felt like it would be impossible to try to accommodate more than one child's emotional and physical needs.

It is impossible. And I know that everybody feels like the grass is always greener, but I becoming convinced that JJ is much more difficult than the average kid — perhaps because he doesn't get enough attention and his brother gets too much, perhaps because he was a preemie and has his own special issues laying in wait for a school-age evaluator to reveal, or perhaps just because he's got a lot of pretty difficult people in his gene pool.

Whatever the reason, it seems to be getting worse. Yesterday, for example, we went to the Children's Museum and had to wait in line with lots of other children and their caregivers. JJ was the only kid running around and around, oblivious and uncaring as to how far away his mother was nor how many times she insisted that he stay close. Other people's kids seem psychologically tethered to them in a way that Jaden never has been. They seem to accept corrections in behavior with relative equanimity while JJ falls to absolute pieces the second he feels like someone is impinging on his God-given freedom to touch anything he pleases and go anywhere his feet take him.

He is fearless and fiercely independent.

A near polar opposite of his twin in that respect.

So I have one 2-year-old who wants to do as much physical activity as possible — without pesky supervision because "I know exactly how pens and electronics and glass containers and cars work, thankyouverymuch" — and the other who would love it if someone would just sit and read him books all day long and hand-feed him bottles and never require him to use any of his hard-fought physical skills.

Why didn't I just have one again?

Oh yeah.

One of the many things I didn't get to choose on this journey of motherhood.

Hopefully JJ won't become as bitter about it as I am.

Moving into a New Year: Mobility Options for Moderate Cerebral Palsy (Videos)

2013-01-02T11:20:00.001-08:00

We are finally looking into assisted mobility options for Malachi. This is a little late, I think, as he is two and a half years old, but in following the Anat Baniel Method, we have been wary of devices (like standers, walkers, etc.) that put him into positions he can't get into himself.

But after a visit with a very impressive and knowledgable ABM practitioner in early December, she told us that Malachi could use some practice with his legs. She recommended a KidWalk walker and we were lucky enough to find a local family willing to let us borrow one for a few weeks.

Malachi didn't really do much in the KidWalk, but when I took it in to our PT to see if he could adjust it, he suggested a Mulholland Walkabout. Wow! What a difference! Malachi was walking all over the place!

Here's me trying to act like this is no big deal that he is WALKING TOWARDS ME all while jumping for joy on the inside. (Never mind that he is actually just interested in playing a puzzle on the iPhone that I'm recording him with)

One thing that has encouraged me on our journey is that every time we do put him into these sorts of devices he does much better than he did before. This proves to me that you don't have to use these devices in order to learn the motor control needed to operate them.

But is the converse true? Would he learn the control faster if he did use them?

I don't know. And it haunts me.

But I have decided to trust in several sources that have led me to believe that in using this equipment he will learn bad habits and a fear of falling that will inhibit further growth. I have always struggled with this ABM injunction from using equipment. But after being able to take the Walkabout home over the Christmas weekend, I wonder if maybe I understand a little better why it's better for me not to have the walker around.

I would put him in it, and he would just stand there. Or cry. Or ask me to get him out. It was so irritating to me that he wouldn't just walk around like I had seen him do at the hospital. So, I would push him and turn it into something that wasn't fun and self-empowering. Malachi is really sensitive to being "pushed" to do things — probably because he has a very pushy mother. The second it would seem like I was asking him to walk, he would recoil and do even less.

So I think for now we need time to grow together. Malachi will need to feel a little more confident in it and I will need to feel a little more relaxed about it. (Considering the months-long waiting periods for obtaining devices like this from insurance companies, I don't think this will be a problem.)

I do have hope for this mobility option though. Our other PT suggested it as a way to have a power wheelchair without the stigma of a power wheelchair. He found a kit online of a way to convert these regular (and relatively inexpensive) toy cars to have push-button controls that Malachi could use and a harness so he won't fall out. I took the boys to Toys R Us to try a few out and was surprised at how well Malachi could sit up in (an unmoving) one.

Of course, this will be little more than a toy. Soon we will have to get a fully functional option that he will use in school and out in the world. And maybe I can hope that one day he'll look as confident and independent as this one day:

To Be, or Not To Be Santa?

2012-12-24T23:54:00.002-08:00

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!

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

2012-12-14T17:10:00.001-08:00

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.