Thoughts on Parenting a Deaf Child, Uncategorized

A Mother’s Journey: Changing “I Can’t” to “I Did”

“No way.  I can’t do that…” This was my very first thought when a good friend looked me straight in the eye and said that I should write a young children’s picture book featuring deaf and hard of hearing (DHH) children.  This was not our first conversation about children’s books in the weeks following my then 2-year-old son’s hearing loss diagnosis.  In hindsight, as I grew increasingly frustrated with my ongoing search for inclusion and variety of DHH people, devices and communication choices within Children’s Literature, I was probably complaining about this quite often.  My very patient friend finally switched modes from “please vent” to “let’s problem-solve,” which was the launch of what has become a truly amazing and fulfilling journey.    

My now 4-year-old son’s hearing loss was diagnosed about a year-and-a-half ago.  The diagnosis was a relief, actually.  To some that may sound strange, but if you’re a parent like me who waited (longer than our better judgement thought was reasonable), pushed, read, requested, and sought second opinions – you know how big of a relief having an answer, ANY answer, can be.  When his (fourth) audiologist revealed the results of his testing to be “reverse sloping, moderate to mild, sensorineural hearing loss,” I had no idea what that meant BUT I was two-years-in-the-making ready to get a move on and get my son’s medical and language/communication needs met!       

It felt like we waited ages to have access to services and resources that would help my husband and I understand how to best support our son.  Then, within 48 hours of reaching a hearing loss diagnosis, I went through the somewhat overwhelming part of receiving a pile of phone calls from local organizations and services.  They all wanted to let me know about how their organization or services could benefit our little guy and whole family.  It was great to know there were so many options, but I first needed to work on my understanding of what we were actually dealing with.  So, I turned to books

Books are important to me, they always have been.  I love to read, and have loved reading to my children since before they can remember.  What a beautiful way to build a healthy foundation of understanding and to introduce our kids to the wonder, variety and mystery of the world.  I was able to find books for myself to help me understand what it means to have a child who has hearing loss.  But, when I sought books FOR my hard of hearing child to increase his understanding of his new hearing aids and to access other kids “like him,” I was surprised and saddened at the lack of options!  Now, please know that over the past 1 ½ years since I first searched, there have been a healthy number of books released that include or feature Deaf/Hard of hearing kids (yay!).  At the time, though, the small number of options felt very isolating.  And, there is still plenty of room for more!

Which brings us back to the moment of immediate self-doubt that I opened this writing with.  It’s amazing how quickly we can doubt ourselves, right?  Almost without even thinking about it at all.  For some reason, though, the idea of writing a book for my son stuck with me.  In the weeks following that conversation with my friend, I found myself making quick notes here and there of little rhymes that came to me when washing dishes (Hi, I’m Sy.  I’m hard of hearing, which is why…) and watching my kids at the swimming pool (These are my hearing aids, aren’t they neat?  They make quiet sounds louder so I don’t miss a beat!).  I engaged with a huge, world-wide social media group of parents who have children with varying degrees of hearing loss to see who else/what other devices needed to be included.   I continued learning about how different hearing devices work and what types/degrees of hearing loss for which they are appropriate, what teaching tools are available for building language and communication and the importance of nurturing self-esteem, self-advocacy and empowerment within DHH kids.  I was gaining confidence and momentum as the manuscript was developing, but there was still a big piece missing… Illustrations

As one might assume, illustrations really can make or break a children’s book.  Probably the single most significant event that catapulted this book to life was finding the right artist to create the illustrations.  It was important to me that the artist be familiar with hearing loss and hearing devices, and also have the style of art that I felt would appeal to our young audience.  I stewed for months on this.  Then, one day, by luck, chance or destiny, I stumbled upon Priscila Soares’ “My Luckyears” page on Instagram and felt my heart skip a beat!  If you’re not yet familiar with her advocacy work through creating art featuring DHH people, you MUST check her out and read her story.  I took a chance and contacted her to see if she would have any interest in illustrating my children’s book.  When Priscila said, “Yes!” and we moved into the illustration and design process, I finally resolved myself to let go of my fear and move into a place of gratitude and delight at what this book (and others like it) might do for so many kids!

“All the Ways I Hear You” was released in digital and print formats in early November, 2019 and hundreds of copies have already been purchased.  A video I shared on social media to explain what the book was about was viewed over 17,000 times in the first two weeks after posting.  I’ve received inquiries about ordering and sharing the book from families, professionals and organizations from all over the world.  Through the process of creating and releasing this book, I’ve learned so much, made some amazing contacts, developed new ideas and have literally added a whole new facet to who I am.   

The best part about moving from “I can’t” to “I did” is how happy and proud my own kids are to read our book, and all the beautiful photos I’ve received of other smiling children (DHH and hearing) reading the book for the first time.  I hope the book continues to bring joy and that anyone reading this who has an idea for a book or other type of media that might benefit our DHH kids (all kids, for that matter) will find encouragement from my experience– and create your own “I DID.”   

“All the Ways I Hear You” is available at stephaniemarrufobooks.com/shop and on Amazon.com.     

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2 Comments

  1. Beautiful! Thank you for your story!

  2. One day by luck….. Felt my heart skip a beat! I could not describe Better how I felt reading this article. I am another mother of a deaf adult son that I couldn’t find books when I was raising him (about children and hearing loss)I’m ecstatic now that more books are available and I can wait to read yours. Congratulations and good luck in every aspect in your life. My book is:”The Secrets Hidden Beneath the Palm Tree.”

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