By Meikele Lee, author of the children’s book “My Belly has Two Buttons” and lives in Helena, Mt. She received a 2017 Purple Dragonfly Book Award; Honorable Mention in the category Special Needs/Disability Awareness. She is a wife and mother to 3 amazing children, one of whom has a feeding tube. She has been in cosmetology for over 10 years, but became passionate about blogging when her youngest child’s oral aversions became life threatening. She used blogging to try and understand her son’s condition and how he can relate to others with or without a feeding tube, and to help educate the public about these life saving devices.
I wrote the book, “My Belly Has Two Buttons,” one night while I was working my graveyard shift at a local group home. I work 10 hour shifts, with up to 8 sleeping kids, and once my office work and cleaning are done, I am able to check on the kids as needed. The time in between checking on the kids is my own and I do whatever I can to stay awake. One night, all of these thought were running through my head and I really felt that if I didn’t write them down, I would go crazy, as they weren’t going away.
Speech pathologists and gastroenterologists had just told us that our son would have his feeding tube for a long period of time because we still didn’t have a diagnosis and he was regressing for no apparent reason. I was frustrated. I just wrote, not even with a purpose. All these things kept pouring into the page and somehow they all seemed to be a story about a little boy who just wanted someone to know what his life was like.
When I was done writing I looked up information on writing children’s books as I wasn’t an author and knew nothing about the process. One of the sites had a “storyboarding” idea that was appealing, so I took time and made one up. I drew silly stick figure drawings because I saw what I wanted the pictures to be in my head, but my artistic skills were sorely lacking. By the morning I had a little paper “book” completely mocked up, and when I got home, I called my mom and sisters and read it to them.
Instantly they all agreed I should do something with this. Because I wasn’t 100% sure I really wanted to produce a book, I asked my sister Rebecca (the illustrator of the actual book) if she would be interested in drawing some ideas based on the pages I would send her. She is very artistic and she seemed really excited about doing it even if it was just for my son. We were at that point from March 2016-May 2016 when I was laid up after surgery. I was scanning the feeding tube sites and lots of parents were asking for books for their Tubies (i.e., children with feeding tubes) on the subject of these life saving devices. I kind of had “aha moment” and thought to myself, “You have a book just waiting, why don’t you start looking into a publisher, silly?”
So I started researching and reached out to a company in Virginia. It was a possibility, but then the kicker was they took too high of percentage ownership of my books and had too much say in the process. I felt my vision would be overshadowed so I kept looking. A childhood friend had written a children’s book and so I contacted her and asked about her publishing experience. She directed me to publishing our story with Jessica Butler at “Publishing our Children’s Stories” in Great Falls, Montanta, and even called Jessica to let her know I was going to be contacting her with questions.
From the first phone meeting, I knew what she offered was what I wanted and my husband was very supportive of me finding a way to work it out as soon as possible. Throughout the rest of the process, I found that more and more parents in the feeding tube community were searching for books. I initially thought that their interest may have been due to my marketing and promotion of the book launch, trying to gain excitement, but I really believe the timing was right for this book.
We launched with Amazon in E-books first and then in paperback two weeks later. So far we have sold the book in three continents in the first two months and I keep trying to reach more and more Tubies through the contacts I’ve made online, seeking help from organizations like the National Foundation of Swallowing Disorders to make the community aware of this book.
So far the feedback I have got was that it’s being used at home to make kids happy, but also being taken to schools, daycares, and extended family to educate them about feeding these amazing kids in an easy to understand way. I am honored to be able to be a part of making their life easier and helping to provide a voice when needing to educate teachers and caregivers for kids with medical complexities. I know with my own son that getting confidence in my abilities to take care of him away from the “safety” of our house and extra supplies was a struggle, but it wasn’t just the equipment. It was the looks, stares, and sometimes-abrasive behavior of others when they saw us feeding our son differently.
Since advocating in my community in different ways, I still come against some people skeptical of my son’s “need” to have his tube, but now I use those opportunities to teach rather than be angry or upset. If they continue, I end the conversation so that my kids don’t ever feel like my son’s tube is a negative thing. Something that is saving your life should never be viewed as negative.
Buy Book on Amazon (available in paperback and on Kindle): http://amzn.to/2gvngnl