Mia Goleniowska Chats "I Love You Natty"!
10-year-old Mia Goleniowska and her mother Hayley are the authors of I Love You Natty: A Sibling's Introduction to Down's Syndrome.
The book was inspired by Mia's relatonship with her younger sister, Natty, who was born with Down syndrome, or Down's syndrome as it's known in the U.K.
We recently spoke with Mia and her mother about writing the book, and how Natty's presence has changed their lives, and the lives of others, for the better.
Growing up, Mia was taught to treat all people with kindness and respect.
"I learnt that everyone is different," Mia explained. "Mummy always says that. We are all good at certain things and need help with others. I still need help with tying my shoelaces and learning my times tables."
Mia's little sister Natty has a genetic condition called Down syndrome, characterized by delays in physical and mental development. Hayley started her own blog, called "Downs Side Up", to discuss her life as the mother of a daughter with Down syndrome.
She was also always on the lookout for books that would help Mia learn about explain why Natty needed to spend extra time in the hospital and why she needed a little extra support in her life, but most books were out of date.
"I always knew there was need for an up-to-date book with real photos showing a snapshot of life with a child with Down's syndrome," Hayley said. "It's what I sought when Natty was little to read with Mia."
Hayley planned to write such a book, but she didn't know where to start. One day, she noticed that Mia would write thoughtful notes and poems for her sister, complete with illustrations.
"I like making cards and writing notes for everyone," she said. "I draw pictures for all my friends and family. I suppose I was four when I started doing it."
When Mia wakes up early, she takes the time to quietly write, draw and read to pass the time before her family rises.
"That's when I wrote things for Natty that Mummy found," Mia said. "Mummy thought it would make a nice book."
Mia's notes to Natty were an inspiration to Hayley.
"I wasn't sure of the format of the book until I found Mia's powerful poems," she said. "Then I knew we had the basis for a book to support others."
Hayley also asked Mia questions about how she would describe Down syndrome, and about her feelings after her sister Natty had heart surgery.
"My answers made up the rest of the book," Mia said. "It was fun when we chose the photos to go in the book. My drawings are in there too, as well as my bear Huggy."
"I gathered the writing, and asked Mia questions to fill in the gaps, creating a work that is positive, uplifting but which contains just enough medical information and facts about signing and other therapies to show the adjustments we made in our live to do the best for Natty," Hayley added.
Mia was happy to help. She knew it was important to write a book to that would provide good information for siblings of children with Down syndrome.
"It's difficult when you have a new baby brother or sister," she said." When they aren't well it's worrying too and when Mummy and Daddy cry, you don't understand. I want everyone to know my sister is brilliant, and annoying too."
Hayley admits that she felt a bit desperate when Natty was born.
"I thought our lives were over and I thought Mia would be affected negatively," she said.
Hayley said these feelings were a result of how scared she was. She was ignorant of the situation.
"With hindsight I realise the lie we are all drip-fed about perfection, how unaccepting society is of anyone who is a little different. Of course I now know the truth. We are blessed to have Natty and Mia in our lives as they both bring very different qualities to our family and teach us alternative ways to view the world."
With what she knows now, Hayley hopes she can spread awareness and prevent other parents from feeling like she did.
"I cannot turn back the clock and relive those early weeks, but I can help to make a difference for other new families," she said. "I hope this book will help buy them precious time with their newborns who are completely innocent to the stigma attached to their extra chromosome."
She also thinks it's extremely important for people to understand how Natty has changed Mia's life for the better.
"I want the world to know that Mia is the most sensitive and understanding ten year old I know, because of her sister, not in spite of her," she said.
Mia also had some of advice for the siblings of kids with Down syndrome.
"Talk to your brother or sister lots to teach them about the world," she said. "Show them interesting things and use sign. Go for sleepovers with family so you can come home more patient, because sometimes its hard work being a sister."
So far, it appears that all of Mia and Hayley's work on the book has paid off.
"The reaction to the book has been astonishing," Hayley said.
The book is being ordered and shipped around the world to parents and family members, medical professionals and clinical leaders, schools, teachers and more.
"Parents are reporting that small children are not wanting to go to bed without it and children with Down's syndrome love looking at the photos of Natty, who they identify with," Hayley added. "I think its a beautiful book for everyone that will actually pull families together."
You can learn even more about Hayley, Mia and Natty Goleniowska by checking out the links to Hayley's blog and Twitter page below. You can also view I Love You Natty on Amazon!