Picture Book About Differences Available In Hardback
Press Release published in the Cape Cod Enterprise By JOANNE BRIANA-GARTNER Jan 6, 2023
“Why Me, Mama?” a picture book about differences by Sandwich resident Katie Lockwood, is now out in hardcover. The book was conceived by Ms. Lockwood as a way to support her young daughter, Rose, who was diagnosed with Moebius syndrome shortly after her birth in 2020. The condition can, among other things, affect eye movements, facial expressions, speech, and the ability to chew and swallow.
Ms. Lockwood said she’d been thinking about creating a book about Moebius syndrome since Rose was born.
“Diversity in literature is important,” said Ms. Lockwood, who has a background in education and counseling and has worked as a disability advocate. “I wanted a book I could read to her. When you are dealing with something specific, you want to have resources that are accessible for young children.”
Supported through a successful kick-starter campaign in early 2022, the book features a young owl who wants to invite her friends to her birthday party but is apprehensive because of her own physical differences. “Owls do not adduct their eyes,” Ms. Lockwood said, ”rather they turn their heads as much as 270 degrees.” Not adducting her eyes is one of young Rose’s Moebius syndrome symptoms.
“Everyone has something that makes them feel different. Sometimes you can see it and sometimes you can’t,” the wise mother owl says, and the pair head out through Boston Common to deliver their invitation.
As part of her kick-starter campaign Ms. Lockwood offered other parents the opportunity to have their child represented as one of the animals in her book. “The animal will have their child’s name and they get to pick one of the differences that their child has and have that be the difference the animal represents,” she said.
The success of the kick-starter campaign resulted in the inclusion of animals such as Lorelai, a hedgehog with a tracheostomy tube; a bunny named Kane with a limb difference; a frog with a congenital heart difference; two moles—one is blind and another wears glasses; and an assortment of other friendly animals who are excited to attend the owlet’s party.
The book is illustrated by Russian artist Evgeniya Erokhina, whom Ms. Lockwood connected with online. In the author/illustrator notes, Ms. Erokhina states that she hopes her illustrations “help children get to know the world better…and let them know they are not alone in their struggles.”
Ms. Lockwood chose Boston Common for the book’s setting because she and her husband spent a good deal of time in the park while Rose was still in the hospital in Boston. “Because of COVID, we couldn’t go into restaurants, so every day we sat in the Boston Public Garden and ate dinner. It’s a beautiful park, and I was fascinated by the animals,” Ms. Lockwood said, “they have such personality.”
Released at the end of 2022, the book won a bronze Moonbeam Children’s Book Award, which recognizes children’s books from both large multi-title publishing houses and small one-title publishers.
The book is available locally at a variety of locations, including: Market Street Bookshop in Mashpee, The Whippletree in West Barnstable, Modern Vintage in Sandwich, Eight Cousins Books in Falmouth, Bread & Roses in Hyannis, Snowy Owl Coffee Roasters in Sandwich, Titcomb’s Bookshop in Sandwich, Parnassus Book Service in Yarmouth Port and Fox & Kit Children’s Boutique in Mashpee. The book is also available through acorncottagepress.com.
With the release of the book, Ms. Lockwood’s next goal is to include copies in local libraries and preschools. Anyone wishing to provide sponsorship for these efforts is welcome to reach out to Ms. Lockwood via email at [email protected].
Ms. Lockwood will give an online book talk on Saturday, January 14, at 11:30 AM that will include a book reading along with a question-and-answer period. A Zoom link is provided through her website. Ms. Lockwood will also give a book talk followed by a discussion about disability representation in children’s literature on January 21 at 11 AM at Bread & Roses bookshop and café in Hyannis, where the book is also for sale. A final speaking engagement this month is planned for January 28 at 10:30 AM at the Brewster Book Store.
In addition to both hard and softcover copies of the book, Ms. Lockwood’s Etsy page sells an 8x10-inch nursery art print by Ms. Erokhina featuring all the animals in the book along with stickers featuring individual drawings of some of the animals alongside inspirational quotes such as “Brace yourself, the future is different.”
Ms. Lockwood said she’d been thinking about creating a book about Moebius syndrome since Rose was born.
“Diversity in literature is important,” said Ms. Lockwood, who has a background in education and counseling and has worked as a disability advocate. “I wanted a book I could read to her. When you are dealing with something specific, you want to have resources that are accessible for young children.”
Supported through a successful kick-starter campaign in early 2022, the book features a young owl who wants to invite her friends to her birthday party but is apprehensive because of her own physical differences. “Owls do not adduct their eyes,” Ms. Lockwood said, ”rather they turn their heads as much as 270 degrees.” Not adducting her eyes is one of young Rose’s Moebius syndrome symptoms.
“Everyone has something that makes them feel different. Sometimes you can see it and sometimes you can’t,” the wise mother owl says, and the pair head out through Boston Common to deliver their invitation.
As part of her kick-starter campaign Ms. Lockwood offered other parents the opportunity to have their child represented as one of the animals in her book. “The animal will have their child’s name and they get to pick one of the differences that their child has and have that be the difference the animal represents,” she said.
The success of the kick-starter campaign resulted in the inclusion of animals such as Lorelai, a hedgehog with a tracheostomy tube; a bunny named Kane with a limb difference; a frog with a congenital heart difference; two moles—one is blind and another wears glasses; and an assortment of other friendly animals who are excited to attend the owlet’s party.
The book is illustrated by Russian artist Evgeniya Erokhina, whom Ms. Lockwood connected with online. In the author/illustrator notes, Ms. Erokhina states that she hopes her illustrations “help children get to know the world better…and let them know they are not alone in their struggles.”
Ms. Lockwood chose Boston Common for the book’s setting because she and her husband spent a good deal of time in the park while Rose was still in the hospital in Boston. “Because of COVID, we couldn’t go into restaurants, so every day we sat in the Boston Public Garden and ate dinner. It’s a beautiful park, and I was fascinated by the animals,” Ms. Lockwood said, “they have such personality.”
Released at the end of 2022, the book won a bronze Moonbeam Children’s Book Award, which recognizes children’s books from both large multi-title publishing houses and small one-title publishers.
The book is available locally at a variety of locations, including: Market Street Bookshop in Mashpee, The Whippletree in West Barnstable, Modern Vintage in Sandwich, Eight Cousins Books in Falmouth, Bread & Roses in Hyannis, Snowy Owl Coffee Roasters in Sandwich, Titcomb’s Bookshop in Sandwich, Parnassus Book Service in Yarmouth Port and Fox & Kit Children’s Boutique in Mashpee. The book is also available through acorncottagepress.com.
With the release of the book, Ms. Lockwood’s next goal is to include copies in local libraries and preschools. Anyone wishing to provide sponsorship for these efforts is welcome to reach out to Ms. Lockwood via email at [email protected].
Ms. Lockwood will give an online book talk on Saturday, January 14, at 11:30 AM that will include a book reading along with a question-and-answer period. A Zoom link is provided through her website. Ms. Lockwood will also give a book talk followed by a discussion about disability representation in children’s literature on January 21 at 11 AM at Bread & Roses bookshop and café in Hyannis, where the book is also for sale. A final speaking engagement this month is planned for January 28 at 10:30 AM at the Brewster Book Store.
In addition to both hard and softcover copies of the book, Ms. Lockwood’s Etsy page sells an 8x10-inch nursery art print by Ms. Erokhina featuring all the animals in the book along with stickers featuring individual drawings of some of the animals alongside inspirational quotes such as “Brace yourself, the future is different.”
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Cape Cod Mom Fundraises for Children’s Book focusing on Daughter’s Rare Disability
January 4, 2022 Katie Lockwood of Sandwich is no stranger to the world of disability. She was diagnosed with Cystic Fibrosis at a young age and has worked in Special Education as an adult. When her daughter was diagnosed with a super rare condition called Moebius Syndrome, she looked for children’s books to help explain her to her little girl and educate their community. She was shocked that she couldn’t find any so decided to write one! Katie spoke to Rebecca Romo on 99.9 the Q’s Feel Good Mornings about the project “Why Me, Mama?” and how you can get involved to make it a reality. Click the soundcloud link to hear the piece. 
Rebecca Romo hosts Feel Good Mornings weekday mornings from 6-10 am on 99.9 The Q. Originally from New Orleans, she moved to Cape to be with her husband a second generation Cape Codder.
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Good picturebooks provide children with windows and mirrors. Windows into the lives of others, and a mirror to reinforce their own place in the world.
But what if a child finds that there are no books that provide the child with a mirror?
If the child is lucky, that child’s mother will step in and create one.
When Rose Lockwood was born in July 2020, her mother, Katie, hoped that Rose’s biggest obstacle in life would be having a mother with cystic fibrosis; but after spending several weeks in the newborn intensive care unit at Beth Israel Hospital in Boston, Rose was diagnosed with Moebius syndrome, a condition that can, among other things, affect eye movements, facial expressions, speech and the ability to chew and swallow.
Seventeen months later, Ms. Lockwood said that her daughter’s presentation is mild compared to other children who have Moebius syndrome. After going home with a feeding tube, Rose is now eating solid foods, walking and is able to smile.
With Moebius, there’s what Ms. Lockwood called “a laundry list” of things that can be present. Some children have limb differences, others may have speech delays or difficulty with fine motor skills. Ms. Lockwood described Moebius syndrome as a visible diagnosis for most people, although she added, “Everyone with Moebius looks different.”
Once the family was all home on Cape Cod, Ms. Lockwood said she began to look for resources for Rose, specifically books.
“Diversity in literature is important,” said Ms. Lockwood, who has a background in education and counseling and has worked as a disability advocate. “I wanted a book I could read to her. When you are dealing with something specific, you want to have resources that are accessible for young children.”
A resident of Sandwich, Ms. Lockwood said she’d been thinking about creating a book about Moebius syndrome since Rose was born. When Rose was still in the hospital in Boston, Ms. Lockwood and her husband, Arden, were able to stay in the city in a residence near Boston Common. “Because of COVID we couldn’t go into restaurants, so every day we sat in the Boston Public Garden and ate dinner. It’s a beautiful park and I was fascinated by the animals,” Ms. Lockwood said, “they have such personality.”
With the knowledge that Robert McCloskey’s award-winning picture book “Make Way For Ducklings” was set there, Ms. Lockwood thought the park might also have illustration potential for her book idea.
Titled “Why Me, Mama?” the book features a baby owl and its mother. The owlet is appropriately named Rose. While the mother owl and her baby deliver invitations to a birthday party they interact with the different animals in the park. In addition to highlighting differences, Ms. Lockwood hopes the book will convey messaging about “kindness, friendship and inclusiveness.”
In developing the idea for the book, Ms. Lockwood said, she didn’t just want a character that has Moebius syndrome. “I wanted characters that are more inclusive to the disability community, so every character in the book represents a different difference. But when you put all those characters together, every disability that you see is something that can be found with Moebius,” she said.
Ms. Lockwood chose an owl for the main character of the book because owls do not adduct their eyes; rather, they turn their heads as much as 270 degrees. Not adducting her eyes is one of the Moebius syndrome symptoms that Rose presents with.
Rather than seek out a publisher, Ms. Lockwood chose to self-publish her book. “I like having control over the creative process,” she said, adding, “My goal for the book is not to make money, it’s to provide an accessible book to kids and families and to have as much of a charitable component as possible by donating books to the Moebius Syndrome Foundation.”
Ms. Lockwood has connected to other parents through a variety of Facebook groups and also started her own group in order to share resources with moms whose children had received a new diagnosis of Moebius. “We talk daily. Moebius looks different for each kid but the moms are all going through the same thing,” she said.
Through an online posting Ms. Lockwood met an artist in Russia, Evgeniya Erokhina, who will be illustrating the book.
In order to raise funds to print and distribute the book, Ms. Lockwood launched a Kickstarter campaign offering parents who pledge a certain amount of money the opportunity to have their child represented as one of the animals in the book. “The animal will have their child’s name and they get to pick one of the differences that their child has and have that be the difference the animal represents,” she said. The idea was well received. “Parents loved it,” Ms. Lockwood said, adding that she had several parents commit to the idea before the Kickstarter campaign even launched.
Some of the parents who pledged have children with visual impairments, so Ms. Lockwood chose to represent those children with a mole, since moles are naturally blind.
In addition to the owl and the mole, other animals featured in the book include a rabbit, a raccoon, a pair of foxes, a chipmunk, a coyote, a hedgehog and more.
Ms. Lockwood said she even received pledges from parents whose children do not have Moebius syndrome but do have some of the differences that a child with Moebius syndrome might have.
Ms. Lockwood called the book a story for families to read together and said the dialogue is what she’s struggled with the most: “I have the overall story—but now that we have all these characters I’m going to have to figure out how to have that flow.”
Ms. Lockwood said she’s learned a great deal from the project, everything from different types of editing to paper choices. While the original Kickstarter goal was to raise enough money to print the books, the campaign has gone beyond that initial $6,000, allowing Ms. Lockwood to hire an editor as well as a layout designer. Extra funds will also help pay for art prints of the book’s animal characters, which Ms. Lockwood plans to donate to children’s hospitals, newborn intensive care units and specialty clinics, saying that the goal in donating prints is to “have artistic representation in places where these children go.”
The kickstarter campaign for “Why Me, Mama?” ends on Monday, January 24. Details can be found on Kickstarter by searching for the book’s title. To date, the campaign has raised almost $19,000.
The book can also be preordered through the website acorncottagepress.com as well as through a new Etsy page set up by Ms. Lockwood.
By working with the layout designer, Ms. Lockwood is planning to make the book available for print-on-demand in a softcover format from Amazon. Ms. Lockwood hopes to have the hardcover book in hand by the summer in order to have copies in local bookstores.
With her own personal experience as well as her professional experiences, Ms. Lockwood knows what it’s like to grow up with a disability and what it means to be “different.”
“Struggle is a part of life. I do believe that everyone has something and sometimes you see it and sometimes you don’t, and while I would never wish this level of struggle on anybody, I think it makes you a better person in the best sense,” she said. “It develops your character, it increases your ability to empathize and connect with others. It can create purpose in your life.”
But what if a child finds that there are no books that provide the child with a mirror?
If the child is lucky, that child’s mother will step in and create one.
When Rose Lockwood was born in July 2020, her mother, Katie, hoped that Rose’s biggest obstacle in life would be having a mother with cystic fibrosis; but after spending several weeks in the newborn intensive care unit at Beth Israel Hospital in Boston, Rose was diagnosed with Moebius syndrome, a condition that can, among other things, affect eye movements, facial expressions, speech and the ability to chew and swallow.
Seventeen months later, Ms. Lockwood said that her daughter’s presentation is mild compared to other children who have Moebius syndrome. After going home with a feeding tube, Rose is now eating solid foods, walking and is able to smile.
With Moebius, there’s what Ms. Lockwood called “a laundry list” of things that can be present. Some children have limb differences, others may have speech delays or difficulty with fine motor skills. Ms. Lockwood described Moebius syndrome as a visible diagnosis for most people, although she added, “Everyone with Moebius looks different.”
Once the family was all home on Cape Cod, Ms. Lockwood said she began to look for resources for Rose, specifically books.
“Diversity in literature is important,” said Ms. Lockwood, who has a background in education and counseling and has worked as a disability advocate. “I wanted a book I could read to her. When you are dealing with something specific, you want to have resources that are accessible for young children.”
A resident of Sandwich, Ms. Lockwood said she’d been thinking about creating a book about Moebius syndrome since Rose was born. When Rose was still in the hospital in Boston, Ms. Lockwood and her husband, Arden, were able to stay in the city in a residence near Boston Common. “Because of COVID we couldn’t go into restaurants, so every day we sat in the Boston Public Garden and ate dinner. It’s a beautiful park and I was fascinated by the animals,” Ms. Lockwood said, “they have such personality.”
With the knowledge that Robert McCloskey’s award-winning picture book “Make Way For Ducklings” was set there, Ms. Lockwood thought the park might also have illustration potential for her book idea.
Titled “Why Me, Mama?” the book features a baby owl and its mother. The owlet is appropriately named Rose. While the mother owl and her baby deliver invitations to a birthday party they interact with the different animals in the park. In addition to highlighting differences, Ms. Lockwood hopes the book will convey messaging about “kindness, friendship and inclusiveness.”
In developing the idea for the book, Ms. Lockwood said, she didn’t just want a character that has Moebius syndrome. “I wanted characters that are more inclusive to the disability community, so every character in the book represents a different difference. But when you put all those characters together, every disability that you see is something that can be found with Moebius,” she said.
Ms. Lockwood chose an owl for the main character of the book because owls do not adduct their eyes; rather, they turn their heads as much as 270 degrees. Not adducting her eyes is one of the Moebius syndrome symptoms that Rose presents with.
Rather than seek out a publisher, Ms. Lockwood chose to self-publish her book. “I like having control over the creative process,” she said, adding, “My goal for the book is not to make money, it’s to provide an accessible book to kids and families and to have as much of a charitable component as possible by donating books to the Moebius Syndrome Foundation.”
Ms. Lockwood has connected to other parents through a variety of Facebook groups and also started her own group in order to share resources with moms whose children had received a new diagnosis of Moebius. “We talk daily. Moebius looks different for each kid but the moms are all going through the same thing,” she said.
Through an online posting Ms. Lockwood met an artist in Russia, Evgeniya Erokhina, who will be illustrating the book.
In order to raise funds to print and distribute the book, Ms. Lockwood launched a Kickstarter campaign offering parents who pledge a certain amount of money the opportunity to have their child represented as one of the animals in the book. “The animal will have their child’s name and they get to pick one of the differences that their child has and have that be the difference the animal represents,” she said. The idea was well received. “Parents loved it,” Ms. Lockwood said, adding that she had several parents commit to the idea before the Kickstarter campaign even launched.
Some of the parents who pledged have children with visual impairments, so Ms. Lockwood chose to represent those children with a mole, since moles are naturally blind.
In addition to the owl and the mole, other animals featured in the book include a rabbit, a raccoon, a pair of foxes, a chipmunk, a coyote, a hedgehog and more.
Ms. Lockwood said she even received pledges from parents whose children do not have Moebius syndrome but do have some of the differences that a child with Moebius syndrome might have.
Ms. Lockwood called the book a story for families to read together and said the dialogue is what she’s struggled with the most: “I have the overall story—but now that we have all these characters I’m going to have to figure out how to have that flow.”
Ms. Lockwood said she’s learned a great deal from the project, everything from different types of editing to paper choices. While the original Kickstarter goal was to raise enough money to print the books, the campaign has gone beyond that initial $6,000, allowing Ms. Lockwood to hire an editor as well as a layout designer. Extra funds will also help pay for art prints of the book’s animal characters, which Ms. Lockwood plans to donate to children’s hospitals, newborn intensive care units and specialty clinics, saying that the goal in donating prints is to “have artistic representation in places where these children go.”
The kickstarter campaign for “Why Me, Mama?” ends on Monday, January 24. Details can be found on Kickstarter by searching for the book’s title. To date, the campaign has raised almost $19,000.
The book can also be preordered through the website acorncottagepress.com as well as through a new Etsy page set up by Ms. Lockwood.
By working with the layout designer, Ms. Lockwood is planning to make the book available for print-on-demand in a softcover format from Amazon. Ms. Lockwood hopes to have the hardcover book in hand by the summer in order to have copies in local bookstores.
With her own personal experience as well as her professional experiences, Ms. Lockwood knows what it’s like to grow up with a disability and what it means to be “different.”
“Struggle is a part of life. I do believe that everyone has something and sometimes you see it and sometimes you don’t, and while I would never wish this level of struggle on anybody, I think it makes you a better person in the best sense,” she said. “It develops your character, it increases your ability to empathize and connect with others. It can create purpose in your life.”
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'The owl is like me': Sandwich mom's book represents children who have 'differences'
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After Katie Lockwood’s daughter was born with rare Moebius syndrome, the mother simply wanted her Rose to be able to see herself and others like her in a book: “Books are how we learn, books are how we make connections to the world and to each other.”
But Lockwood couldn’t find any children’s books about the condition. So the Sandwich resident, who has worked for years in special education and with disabled children and adults, last month turned to Kickstarter crowd-sourcing for help and raised more than $23,000 to create “Why Me, Mama?” The amount was nearly four times her original goal, and she had clearly hit a nerve: Many of the donations came from parents and small organizations also connected to a condition that the Moebius Syndrome Foundation estimates affects 2 to 20 children per 1 million births.
But Lockwood couldn’t find any children’s books about the condition. So the Sandwich resident, who has worked for years in special education and with disabled children and adults, last month turned to Kickstarter crowd-sourcing for help and raised more than $23,000 to create “Why Me, Mama?” The amount was nearly four times her original goal, and she had clearly hit a nerve: Many of the donations came from parents and small organizations also connected to a condition that the Moebius Syndrome Foundation estimates affects 2 to 20 children per 1 million births.
“We are creating a book about differences, how disabilities are a normal part of life, and how everyone has something, sometimes you see it and sometimes you don't!” Lockwood said on her Kickstarter request. A key goal, she noted, is to increase empathy and understanding, as well as to reduce all-too-frequent bullying. Lockwood hopes to independently publish that book by summer, featuring 1-year-old Rose and children like her as forest animals. And with the extra money, Lockwood is working with her Russian illustrator as well as Etsy contacts to create stickers, art prints (some to be donated to hospitals) and peg dolls that are other ways to share the book’s story. Because, she said, finding those items showing children with disabilities is near-impossible, too.
“Representation matters in all ways. It matters in our literary representation, our artistic representation and with things we play with and things that we do,” she said. “So having a doll with a difference matters. It matters to the child who has a difference, and they can see that that doll or that picture looks like them, which shows them that they matter, that they have value. ”The representation is also important to other kids to teach perspective and empathy, she said. " You need to expose them, you need to have those conversations" and books or toys do that "in a natural way.
“Representation matters in all ways. It matters in our literary representation, our artistic representation and with things we play with and things that we do,” she said. “So having a doll with a difference matters. It matters to the child who has a difference, and they can see that that doll or that picture looks like them, which shows them that they matter, that they have value. ”The representation is also important to other kids to teach perspective and empathy, she said. " You need to expose them, you need to have those conversations" and books or toys do that "in a natural way.
”Moebius syndrome is a rare neurological disease that primarily affects the muscles that control facial expression and eye movement, according to the National Institutes for Health website.
The animals who tell Lockwood’s story represent an uncertain time in the family’s life as Rose struggled in Boston hospitals in summer 2020 and then at home after being born during a pandemic, following a high-risk pregnancy, and with a condition that few have heard of and doctors are still working to understand.
Seeking answers for Rose, and companionship in their journey, has led Lockwood to make friends virtually from all over the world, many of whose children also will be represented in “Why Me, Mama?” It’s been a journey that Lockwood, who herself has dealt with an invisible disability her entire life, has pushed to stay positive about as she has worked to help a daughter facing a similar path find her own community and greater understanding.
Growing up different
Lockwood, who grew up in Medford, has cystic fibrosis (CF), which is described by the Cystic Fibrosis Foundation as a progressive, genetic disease that causes long-lasting lung infections and limits the ability to breathe over time. More than 30,000 children and adults in the United States and 70,000 in the world have the disease, the foundation says.
Lockwood, 35 this month, moved at college age to a Sandwich house her mother owned, fell in love with a man from Cotuit, and the couple stayed. Her work, largely with nonprofits and most recently with Bourne schools, has included counseling and teaching, including with the Cape Organization for the Rights of the Disabled (CORD), and helping teens transition from school to adult services.
She has long been involved with fundraising for CF research, and has befriended and worked with others in her condition — which has meant watching several friends die, including while in their teens. She remembers speaking at a meeting when she was 12, and picking up a pamphlet that said a CF patient’s life expectancy is 18. She beat those odds.
A high-risk pregnancy
To have their own children, Lockwood and husband, Arden, had to turn to in vitro fertilization treatments and her pregnancy was high-risk. Doctors were supportive of her choice, she said, because her health is excellent, but watched her closely. She is due with their second child in April.
“For the entire (first) pregnancy, we weren’t worried about Rose, we were worried about me!" she said. "I was considered high-risk, not because of the baby but because of myself.”
When Rose was born in July 2020, the Lockwoods and doctors were surprised when she had trouble eating and had to be brought to Boston Children’s Hospital. She had to be fed through an NG tube — first in Boston for five weeks, then at their Sandwich home for five months. Katie, Arden and Katie’s mother fed her every hour for weeks until they were able to get her on a more regular schedule.
After seeing multiple specialists, Rose was diagnosed with Moebius syndrome because of the telltale sign of not being able to move her eyes laterally outward, called “abducting.” Rose is missing both of her cranial nerves No. 6 (which controls the eyes “abducting”) and one cranial nerve No. 7 (which controls facial expressions, mouth movement and more), Lockwood said, with the other No. 7 cranial nerve smaller than average.
She said she interrogated multiple doctors about whether her genetic CF might have contributed to Rose’s condition but was told “there is no correlation” between her medical history and Moebius. There is much still unknown about Moebius, though, and while those particular nerves are connected to the diagnosis, the type of damage is different for everyone, she said — so no case of Moebius syndrome is quite the same as another. Other common areas affected are feeding (as happened with Rose), limbs, face formation, eyes, hearing and speech. “Not only do I have to explain to Rose as she gets older that she has this, what that looks like and what that means to her, but if we get together with anyone else (with Moebius) — which we have to try to do because it's so rare — she would be like ‘Well, they don’t look like me. They’re not the same as me.’ That’s a whole other layer of discussion.”
The animals who tell Lockwood’s story represent an uncertain time in the family’s life as Rose struggled in Boston hospitals in summer 2020 and then at home after being born during a pandemic, following a high-risk pregnancy, and with a condition that few have heard of and doctors are still working to understand.
Seeking answers for Rose, and companionship in their journey, has led Lockwood to make friends virtually from all over the world, many of whose children also will be represented in “Why Me, Mama?” It’s been a journey that Lockwood, who herself has dealt with an invisible disability her entire life, has pushed to stay positive about as she has worked to help a daughter facing a similar path find her own community and greater understanding.
Growing up different
Lockwood, who grew up in Medford, has cystic fibrosis (CF), which is described by the Cystic Fibrosis Foundation as a progressive, genetic disease that causes long-lasting lung infections and limits the ability to breathe over time. More than 30,000 children and adults in the United States and 70,000 in the world have the disease, the foundation says.
Lockwood, 35 this month, moved at college age to a Sandwich house her mother owned, fell in love with a man from Cotuit, and the couple stayed. Her work, largely with nonprofits and most recently with Bourne schools, has included counseling and teaching, including with the Cape Organization for the Rights of the Disabled (CORD), and helping teens transition from school to adult services.
She has long been involved with fundraising for CF research, and has befriended and worked with others in her condition — which has meant watching several friends die, including while in their teens. She remembers speaking at a meeting when she was 12, and picking up a pamphlet that said a CF patient’s life expectancy is 18. She beat those odds.
A high-risk pregnancy
To have their own children, Lockwood and husband, Arden, had to turn to in vitro fertilization treatments and her pregnancy was high-risk. Doctors were supportive of her choice, she said, because her health is excellent, but watched her closely. She is due with their second child in April.
“For the entire (first) pregnancy, we weren’t worried about Rose, we were worried about me!" she said. "I was considered high-risk, not because of the baby but because of myself.”
When Rose was born in July 2020, the Lockwoods and doctors were surprised when she had trouble eating and had to be brought to Boston Children’s Hospital. She had to be fed through an NG tube — first in Boston for five weeks, then at their Sandwich home for five months. Katie, Arden and Katie’s mother fed her every hour for weeks until they were able to get her on a more regular schedule.
After seeing multiple specialists, Rose was diagnosed with Moebius syndrome because of the telltale sign of not being able to move her eyes laterally outward, called “abducting.” Rose is missing both of her cranial nerves No. 6 (which controls the eyes “abducting”) and one cranial nerve No. 7 (which controls facial expressions, mouth movement and more), Lockwood said, with the other No. 7 cranial nerve smaller than average.
She said she interrogated multiple doctors about whether her genetic CF might have contributed to Rose’s condition but was told “there is no correlation” between her medical history and Moebius. There is much still unknown about Moebius, though, and while those particular nerves are connected to the diagnosis, the type of damage is different for everyone, she said — so no case of Moebius syndrome is quite the same as another. Other common areas affected are feeding (as happened with Rose), limbs, face formation, eyes, hearing and speech. “Not only do I have to explain to Rose as she gets older that she has this, what that looks like and what that means to her, but if we get together with anyone else (with Moebius) — which we have to try to do because it's so rare — she would be like ‘Well, they don’t look like me. They’re not the same as me.’ That’s a whole other layer of discussion.”
Learning about perspectives
Showing how the syndrome can affect children so differently — and is obvious in some children and hard to see in others — is a key theme of “Why Me, Mama?” “I didn’t want to just have (one) character with Moebius because Moebius looks different for everyone,” Lockwood said. So Rose’s character is a baby owl — which has to turn its head like Rose does to see to the side because owls can’t abduct either. Then there are more than 20 other characters, all based on real children.
When reading the book, Rose “can say ‘The owl is like me, the owl can’t do that and I can’t do that.’ But she might not make that connection with every page. Because the bunny is missing a hand, but she’s not missing a hand,” Lockwood said. “… I thought it would be nice if people could make connections to themselves and to others throughout the book.”
Andrea Smith, executive director of the Many Faces of Moebius nonprofit, said she believes the book will make connections with non-Moebius readers, too, which is an important factor considering how often bullying concerns come up in discussions in the organization’s private Facebook groups.
“‘Why Me, Mama?’ will help young children, or anyone for that matter, understand that although someone may physically appear different than them, the person still feels, hurts, experiences happiness, celebrates victories, and needs love and acceptance just like them,” Smith said by email. The book " is a much needed resource for parents, teachers and children to better understand that differences are okay, and beautiful.”
Boston animals, generous friends served as inspiration
During the weeks of visiting Rose in the hospital in 2020, the Lockwoods would often sit and de-stress at the end of the day at the Public Garden, where family and friends – distanced because of pandemic concerns – frequently brought them dinner and visited. Lockwood remembers marveling at the wildlife they would see there in the middle of the city. The animals whose antics comforted her during that uncertain time became the inspiration for the characters created for “Why Me, Mama?”
The Kickstarter campaign offered a prize for a $500 donation of having a character created to represent a particular child. There is a page on the https://www.acorncottagepress.com/all-the-animals.html website devoted to telling the story of those more than 20 children, including Kane the rabbit, Ally the cat, Rafael the puppy, Reese the duckling, Everly the squirrel and Harrison the chipmunk.
Many of the children are part of 15 families Lockwood met through a virtual community she created that includes moms from Australia, the United Kingdom, Canada and all around the U.S. who had children within months of each other. They have a daily online chat, sharing experiences, ideas and generally holding each other up — like any new moms' group, but with the Moebius connection.
Drawing real children
One mom is Dani Doughty, from Virginia, who said she has been happy to support Lockwood’s project and that her daughter and son are both represented "in a book that educates about and normalizes the disabilities they live with every day,” she said by email. “Knowing that disabled and able-bodied children and their families will get to see such a wide and diverse set of characters … is such a special feeling. The world has been ready for diversity of all kinds to be represented in more children's storybooks.”
The book’s story is Lockwood’s, inspired by the other children, but the soft illustrations are by Evgeniia Erokhina, an artist and mother in Russia whom Lockwood found through an online posting and who has illustrated books for several years after working in textile design. The two have collaborated for months through technology.
“I love it when people try to talk about difficult topics … and I liked her passion for this project,” Erokhina explained via email about her involvement. While the book may not be a commercial success, “the desire to do something good for the world, to bring a little good — no one can prevent us from doing this..”
The illustrating has taken longer than expected as more children have been added, parents have weighed in, and Lockwood and Erokhina have talked through changes to story and pictures The feedback and collaboration is inspiring and energizing, she says, but feels a responsibility to get drawings of the real children right.
Lockwood believes the extra time and care is worth it. “I wanted to make sure … (that) you can tell, ‘Oh that’s my baby,” she said, noting that three of the characters memorialize children who have died. Erokhina “has taken such care to really get the essence of each little one in the story and make them into an animal.”
A resource for families.
A timing goal is to be able to distribute copies of “Why Me, Mama” to each child participating in a July convention in Atlanta of the Moebius Syndrome Foundation, which also supported the book. Lockwood wants the book to be a resource for families, as do the nonprofits she’s working with. Smith plans to include the book in welcome packages that her organization sends to new parents of children diagnosed with Moebius.
Smith donated herself to have Dakotah the raccoon represent her 13-year-old niece, who has both Moebius and autism. The real Dakotah approved. “The illustrations of the children’s animals are beautiful, calming and truly capture the spirit of the child they represent," Smith said.
Smith marvels at what Lockwood has been able to accomplish to help so many families.
“As a member of the Moebius community, I am very proud of her and the change she is making for the community and others that have physical or visible differences," Smith said. "We need more understanding in this world. We need more Katies.”
Contact Kathi Scrizzi Driscoll at [email protected]. Follow on Twitter: @KathiSDCCT.
Showing how the syndrome can affect children so differently — and is obvious in some children and hard to see in others — is a key theme of “Why Me, Mama?” “I didn’t want to just have (one) character with Moebius because Moebius looks different for everyone,” Lockwood said. So Rose’s character is a baby owl — which has to turn its head like Rose does to see to the side because owls can’t abduct either. Then there are more than 20 other characters, all based on real children.
When reading the book, Rose “can say ‘The owl is like me, the owl can’t do that and I can’t do that.’ But she might not make that connection with every page. Because the bunny is missing a hand, but she’s not missing a hand,” Lockwood said. “… I thought it would be nice if people could make connections to themselves and to others throughout the book.”
Andrea Smith, executive director of the Many Faces of Moebius nonprofit, said she believes the book will make connections with non-Moebius readers, too, which is an important factor considering how often bullying concerns come up in discussions in the organization’s private Facebook groups.
“‘Why Me, Mama?’ will help young children, or anyone for that matter, understand that although someone may physically appear different than them, the person still feels, hurts, experiences happiness, celebrates victories, and needs love and acceptance just like them,” Smith said by email. The book " is a much needed resource for parents, teachers and children to better understand that differences are okay, and beautiful.”
Boston animals, generous friends served as inspiration
During the weeks of visiting Rose in the hospital in 2020, the Lockwoods would often sit and de-stress at the end of the day at the Public Garden, where family and friends – distanced because of pandemic concerns – frequently brought them dinner and visited. Lockwood remembers marveling at the wildlife they would see there in the middle of the city. The animals whose antics comforted her during that uncertain time became the inspiration for the characters created for “Why Me, Mama?”
The Kickstarter campaign offered a prize for a $500 donation of having a character created to represent a particular child. There is a page on the https://www.acorncottagepress.com/all-the-animals.html website devoted to telling the story of those more than 20 children, including Kane the rabbit, Ally the cat, Rafael the puppy, Reese the duckling, Everly the squirrel and Harrison the chipmunk.
Many of the children are part of 15 families Lockwood met through a virtual community she created that includes moms from Australia, the United Kingdom, Canada and all around the U.S. who had children within months of each other. They have a daily online chat, sharing experiences, ideas and generally holding each other up — like any new moms' group, but with the Moebius connection.
Drawing real children
One mom is Dani Doughty, from Virginia, who said she has been happy to support Lockwood’s project and that her daughter and son are both represented "in a book that educates about and normalizes the disabilities they live with every day,” she said by email. “Knowing that disabled and able-bodied children and their families will get to see such a wide and diverse set of characters … is such a special feeling. The world has been ready for diversity of all kinds to be represented in more children's storybooks.”
The book’s story is Lockwood’s, inspired by the other children, but the soft illustrations are by Evgeniia Erokhina, an artist and mother in Russia whom Lockwood found through an online posting and who has illustrated books for several years after working in textile design. The two have collaborated for months through technology.
“I love it when people try to talk about difficult topics … and I liked her passion for this project,” Erokhina explained via email about her involvement. While the book may not be a commercial success, “the desire to do something good for the world, to bring a little good — no one can prevent us from doing this..”
The illustrating has taken longer than expected as more children have been added, parents have weighed in, and Lockwood and Erokhina have talked through changes to story and pictures The feedback and collaboration is inspiring and energizing, she says, but feels a responsibility to get drawings of the real children right.
Lockwood believes the extra time and care is worth it. “I wanted to make sure … (that) you can tell, ‘Oh that’s my baby,” she said, noting that three of the characters memorialize children who have died. Erokhina “has taken such care to really get the essence of each little one in the story and make them into an animal.”
A resource for families.
A timing goal is to be able to distribute copies of “Why Me, Mama” to each child participating in a July convention in Atlanta of the Moebius Syndrome Foundation, which also supported the book. Lockwood wants the book to be a resource for families, as do the nonprofits she’s working with. Smith plans to include the book in welcome packages that her organization sends to new parents of children diagnosed with Moebius.
Smith donated herself to have Dakotah the raccoon represent her 13-year-old niece, who has both Moebius and autism. The real Dakotah approved. “The illustrations of the children’s animals are beautiful, calming and truly capture the spirit of the child they represent," Smith said.
Smith marvels at what Lockwood has been able to accomplish to help so many families.
“As a member of the Moebius community, I am very proud of her and the change she is making for the community and others that have physical or visible differences," Smith said. "We need more understanding in this world. We need more Katies.”
Contact Kathi Scrizzi Driscoll at [email protected]. Follow on Twitter: @KathiSDCCT.