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

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

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

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

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)

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.