Writing for his life
Shasta Kearns Moore penned a 'love story for babies' to help her brain-injured son and other kids with cerebral palsy
As they approach their second birthday, napping in their cribs or catching a few winks in their car seats is one of only a handful of things Jaden and Malachi Millard do exactly the same way.
While Jaden, nicknamed 'JJ' by his parents, has developed normally for a premature twin, his brother Malachi lags behind in many areas.
'JJ runs and climbs, but Malachi cannot even roll over consistently,' said Shasta Kearns Moore, 28, a stay-at-home mom to her young sons, who were born 10 weeks early on June 26, 2010, at Oregon Health and Science University.
She and her husband, Matt Millard, 33, a software trainer at OHSU, live in the Lents neighborhood of Southeast Portland. They learned a month after the boys' early arrival that Malachi, the older child by five minutes, had sustained an oxygen deprivation-related brain injury.
Doctors eventually diagnosed the dark haired, blue-eyed tot with extrapyramidal quadriplegic cerebral palsy. Because he still cannot crawl or stand by himself, Kearns Moore said it is generally considered unlikely he will ever walk independently.
'Malachi just doesn't seem to have the ability to 'write down' the things he learns and build on them like JJ does,' she added. 'It's like every day he starts over again at square one.'
Days of tears
For Kearns Moore, a former newspaper journalist and former editor of the West Linn Tidings, it took many weeks filled with tears, frustration and guilty feelings to make peace with Malachi's condition. Today she fights to set the stage for every accomplishment he makes, however small.
Millard has had a harder time adjusting to the idea that Malachi could face a life filled with significant challenges.
'I would never have wished for my child to have to go through this kind of pain,' he said simply.
The couple started teaching their sons sign language when they were infants as a way to communicate with them before they could talk and to encourage certain hand motions in Malachi.
At a park, when JJ gets out of his stroller and heads for the jungle gym, the boys' physical differences become obvious to the casual observer.
'It's pretty clear that Malachi is unable to do anything on a playground alone,' Kearns Moore noted. 'His feet stick out straight underneath him, legs crossed and toes pointed.'
The boys' developmental disparities also show up in the area of speech.
'JJ's words are clearer and have more nuanced intonation, but I think Malachi knows just as many words as he does now,' his mother said. 'He has done a marvelous job catching up to his brother.'
Kearns Moore, who blogs about her experience raising twins at OutrageousFortune.net, is a determined, pragmatic and ferociously optimistic mom who devours everything she can read about the newest therapies for Malachi's form of CP. Because she loves literature and adores her boys, she identified one of the great equalizers for Malachi and JJ when her sons were tiny: books.
'Both of them love to read, probably because we started with them very young,' Kearns Moore noted. 'They would sit on my lap and have me read book after book for hours if I let them.'
When they're immersed in a children's story, the boys 'respond fairly similarly, pointing to things, making animal noises, etcetera,' their mother said. They particularly like books illustrated with 'very simple silhouettes and almost no text,' Kearns Moore added, prompting her to create a story of her own centered on themes of differences and acceptance.
That's how 'Dark and Light: A love story for babies' was born. Designed as a simple board book aimed at very young children, Kearns Moore wrote a universal story that should appeal to all ages, the first in a planned series of three.
'I thought of a story that involved difference and my fear that Malachi will be shunned for his,' she said.
She'd love it if the book raised enough money to pay for Malachi's primary form of therapy, the Anat Baniel Method, which so far has strengthened the neural connections in his brain enough to change his muscle tone and improve his eating capabilities.
Kearns Moore is meeting that goal through a website called Kickstarter.com, which supports entrepreneurial projects such as hers. In her initial effort, she raised more than $5,000 by attracting individual pledges. The outpouring of support overwhelmed her.
'Just having people stand behind us and say, 'Life dealt you a rough hand, but we're going to help you make something awesome out of it,' means more than I can ever express,' Kearns Moore said.
Meanwhile, she and Millard are beating the drum for their son's progress, signing to him, reading to him, massaging his arms and legs and helping him stand by holding his toddler-sized hands in theirs and pulling him up to his feet.
They took him to San Rafael, Calif., where the Anat Baniel Method therapy center is headquartered, last October and again in May. The family plans to travel south again on July 9. Each trip costs about $3,000, but Kearns Moore and Millard are convinced this is the therapy that best fits Malachi's profile and special needs.
'It seems to align with the latest in neuroscience, particularly the idea that the brain is capable of remarkable and rapid change,' Kearns Moore said. 'It has done things for Malachi that traditional doctors have said is impossible.'
Profits from sales of her first book will go exclusively toward Malachi's medical expenses, Kearns Moore noted. Still, her aspirations for the book series go beyond her own family.
'My secret dream is that a whole bunch of people will decide to come together and create a miracle where so much money is raised that we can start a nonprofit to offer ABM to other children,' she said. 'I would be thrilled.'
Kearns Moore said she is 'beyond the point of caring if Malachi walks funny. I mostly want him to be independent and happy.' But the twins' mom has another lens through which she views their futures.
'My fondest hopes are for both my boys to be loved and accepted as they are, however that may be,' she said. 'I worry far more about how people will react to Malachi's disability than the actual inconvenience of the disability itself.'
Shasta Kearns Moore's Kickstarter.com project had garnered 130 backers who'd pledged a total of $5,161 - and counting - to get her children's book into print.
To learn more, visit kickstarter.com/projects/1718096956/dark-and-light-a-love-story-for-babies.