My Belly Has Two Buttons is now available on Amazon.com for e-book sales, and in a matter of a few days will be available for paperback sale.
It doesn't seem real...just a few months ago I was writing the manuscript, feeling led to write something, anything to explain what my son was going through. What I hoped for him.
I hope that he feels confident and safe, not embarrassed or ashamed.
I had no intentions of publishing this year and possibly just keeping the story to myself and sharing it with him if things ever got hard for him, but for some unknown reason I was having my sister start illustrating it regardless just to see what it could look like.
And then I was scheduled for surgery and had more time to "myself" recovering than I had in the last two years at the doctor's orders...scanning the feeding tube sites on Facebook and I kept seeing so many parents searching for children's books. Not just any children's books, Feeding tube specific, and modifying books they already owned by drawing a g-tube on the tummy of a character so their child felt a part of it.
I found myself researching publishers and even speaking with one in Virginia, but finding that either they didn't take first time authors or the cost was WAY out of my realm of possibility and they might not use my illustrator's amazing pictures (Rebecca Robertson)...but then I remembered a childhood friend had published a book in the last year so I looked up her book publisher and then contacted her to get more information.
Jesse with Publishing our children's stories was the woman who made what seemed impossible possible. I was so excited to hear her ideas and see what the publishing process entailed. I found the funding and had the support of my family in moving forward with this crazy adventure and now almost 4 months later it's going to be a reality!
I tell you all of this not because you should follow EVERY wild hare you get in life, but that in our circumstances things don't normally come easy, and most especially in the last year I've felt like my little family is fighting a war that we won't be able to win with health concerns and finances. But for some reason this book is SUPPOSED to be written, maybe not for me or my family specifically, but maybe for another family who's child is struggling to feel like they belong somewhere or to encourage that mom in the waiting room of the hospital while her child is in surgery getting his or her feeding tube...
I hope this book can also get people outside of this community asking good questions, and to better understand just what we as Tubie Parents do every day. That they can look at us and our kids and say "I get you" "I am proud of you" "I don't pity you, and I want to know how I can be supportive"
This journey is sometimes very isolating, I think that is true with any child or family member who has a special need.
Let's stop allowing these families to isolate. Engage them and encourage them in any way you can. And feeding tube families; be willing to answer and not be defensive I know how people can and have been when they find out a child has a button, It can be very abrasive, but we need to remember they don't know what's gone on, they obviously are curious and if we take the time to respond it will only benefit any future encounter they have the next time with a Tubie.
So I hope you all look forward as much as I do to the paperback launch, there is just something about knowing that I will hold in my hand the object I've been picturing in my mind. It's scary! I've done things I never would have had the courage to do, like invite local medical professionals to the Book Launch Party in my town, make a video book trailer and post it on YouTube, contact news stations/newspapers/book stores/magazines to see if they would be interested in helping raise awareness. I've even now had an offer to become a mentor with a program called The Power of Two. Its to help other parents who are new to Pediatric Feeding Disorders. Give advice, help them find the courage we know is in them to fight and advocate for their child. I am not an expert by any stretch, but I am excited to possibly help someone learn how to find their inner warrior because having my kids has certainly brought out mine.
So all you Tubies, Warriors, and knowledge thirsty people; lets change the world and put ourselves in Nico's shoes for just a few minutes and enjoy "My Belly Has Two Buttons" and hear him tell you about his 2nd button and all the things it does for him, but doesn't limit him in being an active 2 year old.
Thank you
Meikele Lee
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