Hiya Moriah: An Interview with the Author

by jphilo | Mar 7, 2019 | Books and Resources, Different Dream, Special Needs Parenting

Hiya Moriah: An Interview with the Author

Hiya Moriah is a delightful new children’s book by my friend and fellow special needs parent, Victoria Nelson. She agreed to be interviewed by Different Dream and tell our audience about her book. Settle back and enjoy this peek into how Hiya Moriah came into being.

What is Hiya Moriah about?

It’s about a young girl born with a rare syndrome called CHARGE, who takes you along on her journey. She shows you that even though she looks different with all her medical equipment, she’s just like any other kid her age wanting to play and have fun. Moriah encourages you to practice inclusion with other kids by just saying “hiya.” We can hold so much power with one simple word, and it’s amazing what saying “hi” can do to make someone’s day, and make them feel included.

What inspired you to write this book?

So many times during my daughter Moriah’s life, I would take her out, and people would just stare at her, not knowing what to do or say. So when the staring was really awkward, I’d tell Moriah to start waving, and say “Hi.” This would usually allow people to engage with Moriah instead of just stare at her. Then, after she passed away, Hiya Moriah came to mind. My hope is that through this book, everyone will learn to say “hiya” when meeting someone like Moriah. I provide a lot of education around the medical equipment and have the illustrations detailed so that children can learn it, and recognize it in the world around them. I believe knowledge and empathy are powerful tools, and can help break down the social barriers we have when making friends who are different than us.

Why are you still telling Moriah’s story?

While we saw so much goodness that came from people during our time with Moriah, we saw that there was still so much room to grow as a society in the way we see and value people with special needs. I saw that not everyone saw Moriah for who she was, nor valued her the way she should have been. Because she didn’t speak, she was often ignored or written off. Because she looked different people would ask, What’s wrong with her?” right in front of her. I was even asked, “Why didn’t you abort her?” as if her life was totally disposable. I want to send the message and stand on the truth that everyone matters and deserves to be seen, loved, and accepted. Through this inclusive children’s book, I can do so.

Who’s the audience for your book?

Families, schools, children’s hospitals–anyone who is wanting to learn about one child’s journey with special needs, and wanting to learn how to practice inclusion. I also hope that children like Moriah and all her friends can see themselves represented and identify with the different things that she had and her challenges. Sometimes, just seeing someone else do it and go through it serves as an encouragement and inspiration making you feel like you can do it, too!

What do you want future readers of Hiya Moriah to know?

I want all the Hiya Moriah readers to know that this is just one story, Moriah’s journey – but that there are so many beautiful people, so many beautiful stories out there. I encourage everyone to go out into your schools or community, and take the time to meet people who have different abilities, and get to know them. All you have to do is wave and say, “Hiya.” I promise you your lives will be forever changed.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Victoria lives in the greater Los Angeles area, married to her high school sweetheart, Justin, and is mama to Moriah (in heaven), Jadon, Olivia, and Shane. While she’s not busy chasing a toddler, kissing boo boos, and learning Fortnite dances from her kids, Victoria enjoys traveling to Southeast Asia to see her family, watching reruns of The Office, eating healthy foods to offset her love for cake, and takes time for herself by reading, running, and writing. She blogs at www.momentswithmoriah.com.

Author Jolene Philo

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Stress and Compassion Fatigue Is Huge in Caregiving Parents, Part 1

Stress and compassion fatigue is real for parents caring for kids with special needs. Not only is it real, the number of people who completed a recent survey on the subject show that stress and compassion fatigue is a huge issue for families. This series examines the survey in depth, starting with a statistical overview of the results. Part 2 of the series will take a deep dive into the comments made by those who completed the survey. How huge?

1,408 respondents completed the survey.
1,408 respondents completed the survey in one month.
1,408 respondents completed the survey in one month, though its primary promotion was a few posts on Facebook.
1,408 respondents completed the survey in one month, though its primary promotion was a few posts on Facebook with no ad money spent.

By itself, that statistic reveals the magnitude of stress and compassion fatigue in caregiving parents. A look at their compiled answers shows the effect of stress on parents.

98% said caregiving duties cause extra stress in their daily lives.
On a scale of 1 to 10, the average stress level of parents was 6.4.
91% said caregiving has affected their mental health.
87% said caregiving has affected their physical health.
65% indicated willingness to be interviewed for a book on the subject of stress and compassion fatigue in caregiving families.

The major causes of stress for respondents were as follows:

Overwhelming demands: 25%
Isolation: 20%
Financial constraints: 12%
Lack of emotional support: 10%
Lack of available resources: 9%
Lack of practical support: 9%
Grief: 3%
Other: 11%

When asked to indicate any and all of the following stressors they face on a regular basis, here’s how they responded:

Sleep deprivation: 77%
Excessive paperwork: 44%
Insurance coverage issues: 39%
Government program issues: 37%
Spiritual doubts and questions: 30%
Unreliable hired caregivers: 27%
Other: 26%

The results of the survey make me very sad. They show that parents who love their children dearly are shouldering heavy loads.
The results of the survey strengthen my resolve to begin researching a book about stress and compassion fatigue in caregiving parents.
The results of the survey are a source of hope because 2/3 of these overburdened parents are willing to be interviewed as part of the research.

Thank you to the caregivers who took time out of their busy days to complete the survey.
Thank you for being honest.
Thank you for being willing to share your experiences for the benefit of other parents who need to know they are not alone, who need to know they will make it.
Thank you for being patient. It’s going to take a while to read all 1,408 surveys.
Thank you for being understanding. I wish I could interview all who are willing, but that would take years.

Finally, thank you for your prayers. I will need them while making hard decisions about who to contact, while scheduling interviews, and while shaping what parents share into a book proposal attractive enough to be accepted by a publisher. Only through your prayers and with God’s guidance will this book become a reality.

Part 2

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.