Thursday, February 7, 2013

Friends of Baby Hearts Press

There are days when I feel overcome and humbled by the kindness shown to me and my company.  What started out as a project of necessity has certainly turned into a mission which is continually being redefined and expanded. Thanks to the kindness of my friends, I see Baby Hearts Press moving in a totally new direction and it's very exciting, exhilarating and uplifting.

When Baby Hearts Press first started, in 1995/1996, it started because no one wanted to publish Hypoplastic Left Heart Syndrome: A Handbook for Parents.  I was the author and the mother of a child with HLHS and I knew there were other mothers and fathers out there who wanted the information in the book I put together.  Every single publishing company I queried sent me a rejection letter although many of them had handwritten notes of encouragement on them -- recommending other publishing companies or wishing me good luck. I guess they were the very first friends of Baby Hearts Press, even though BHP didn't exist yet, because they helped me believe in the book I had written.

When I had exhausted all of the publishers that seemed reasonable, I resigned myself to the fact that Hypoplastic Left Heart Syndrome: A Handbook for Parents was not going to be published.  Who would guess that a trip to Waldenbooks would change my life forever?

Someone had special ordered a book, Dan Poynter's Self-Publishing Manual but didn't pick it up so it was on a table of single books being sold. At the time it was a purple book and it practically jumped into my hands when I walked into the store. I read the back cover and couldn't believe what I saw there. It said that anyone could publish a book if they just followed the directions inside that purple book. I quickly found my husband Frank and showed him the book. That book became my bible and Baby Hearts Press was born.

Thanks to Dan Poynter I started my own publishing company and published my book. Frank watched the boys while I drove to Office Depot in Austin Texas (Mound, Texas doesn't have any stores!).  I had many illustrations in the book, illustrations Frank created to make understanding the complications the HLHS heart, as well as simple illustrations detailing the different surgeries our children might have. When I started copying pages, I noticed that the illustrations could be seen too easily on the other side of the page and I didn't like how it looked. Someone from Office Depot recommended I use thicker paper. I ended up using card stock before I was satisfied! In that one day I made 100 copies, comb-bound each copy and left with quite a bill. It cost me about $7.50 per book. I didn't want to charge too much money for the book so I only charged $15 for the first copies of the book (even though Dan Poynter said publishers needed to charge 8 times the cost of producing the book to make a profit). The next day I could hardly lift my arm for all the pressing I had done with the comb-binding machine. (The manager said I could have a job working at his store any time I wanted!)

I went home and followed Dan Poynter's directions. He said to send copies of the book to Library Journal, the Copyright Office and a number of other places. I did what he said. Within a short period of time I received notification that the book had been received by the Copyright Office (and my check was cashed), the Library of Congress also had a copy of my book. That's when it really felt official!  I spoke at a support group I helped found at Brackenridge Children's Hospital, along with heart friend Jane Hunt, and I sold copies of my book to other heart friends.  Then I got a phone call for an order of the book -- from Chicago! The lady told me that she read about my book in Library Journal. I was ecstatic! The orders started pouring in. Before long I had sold my first 100 copies of the book. I let go of each and every one of them because I was so excited other people wanted the book so I don't even have a copy of that first edition.

As I watched my stack of books dwindle, I knew it was time to follow Dan's advice (by this time I felt that I was on a first-name basis with Mr. Poynter. As requested, I had sent him a copy of my book and he sent me a lovely letter of congratulations and a ribbon that said AUTHOR on it!) and I started looking for printers to create a paperback version of the book for me. I made some changes, too. By this time I had "met" Teresa Sorlie and learned of her son Matthew's journey -- a child with HLHS who had a transplant. Matthew's Story became part of the book and showed how children could survive by going that route.

I don't have enough time this morning to detail all of the people who helped launch Hypoplastic Left Heart Syndrome: A Handbook for Parents. It is indeed humbling to list the many doctors (especially Alex's surgeon, Dr. John Calhoon, who wrote the Foreword for the book and encouraged me every step of the way!), nurses (so many nurses answered questions I had while Alex had his fenestrated Fontan), parents and friends. If you look in the Acknowledgements section of the book, you can see the many people who helped. I hope I didn't overlook anyone!

I started writing my book in 1995 and it was published in 1996. It is sometimes hard to believe that I've been running Baby Hearts Press for going on 17 years!

This year I have some new friends helping Baby Hearts Press and I'm very excited to see where their questions and encouragement is taking me. I already told you about Mary Black. She is a fellow author but she is so much more than that. We have become each others' Accountability Coach.  Thanks to her I can't wait to write my blog every week. She has inspired me and helped me rediscover the joy I have always had when putting thoughts on paper.

Chad Schultz is a new friend to Baby Hearts Press. I met Chad at a Toastmasters event. He met me, found out about my mission and took me under his wing. As a businessman and web designer, he has a wealth of experience that is transforming the way I look at what Baby Hearts Press can and should be. He invited me into his Mastermind group where I have met yet another inspiring person, who affirmed and validated my goals.

I couldn't possibly finish a blog entitled "Friends of Baby Hearts Press" without mentioning the people who helped give Baby Hearts Press a presence on the Internet. Before BHP ever had a website, Sheri Berger reviewed my book on her website. Thanks to her review, I sold books all over the world -- with orders being given via email and checks or cash being sent to me in the mail. There was also a doctor who ran a surgeon's website called "The Scrub Sink" who reviewed my book on his site and provided a link to my email. He also let me write an article about HLHS for his site.  Then I "met" heart friend, Kerrie Van Eck (who contributed to The Heart of a Mother), whose brother Brian was a webmaster. He gave me my very first website as a kindness because his nephew, Jonah, was born with HLHS. When he could no longer help me Mona Barmash stepped in and helped for a short time. Then I met Sue Dove at a parenting conference where I was a speaker (in Atlanta) and Baby Hearts Press found its webmistress.

Sue and I had been friends for years online. Her older son was about the same age as Joey (my older son) but he had a heart defect similar to Alex's. Like Alex, Sue's son Scott, also had a Fontan heart. Sue offered to be the webmistress for Baby Hearts Press and we've enjoyed a 15-year relationship that shows no signs of ending.

Baby Hearts Press has had other friends, too. Michelle Rintamaki of Kids with Heart has been a supporter and encourager of Baby Hearts Press and all of my endeavors. Her son is closer to Scott's age than Alex's and he was born with tetralogy of Fallot. Michelle is a mom on a mission who created a clearinghouse of books and resources available to the congenital heart defect community. Like me, she has worked tirelessly to help the community while never drawing a paycheck. Like me, she sinks the money she earns right back into her company because she believes so strongly in the vision and mission of Kids with Heart. I admire how long Michelle has done parent matching and provided local support to other parents in the Green Bay area. We are two kindred spirits.

Oh, dear! I find I could go on and on about all of the Friends of Baby Hearts Press, but I think I'll have to save some of these stories for another blog post. For now let me say that Baby Hearts Press was born of necessity but continues to exist because of the love that lifts it up and the people who believe that everyone deserves true stories that provide hope and encouragement to the congenital heart defect community. It's thanks to all of our friends that we continue to work on new projects. Hypoplastic left heart syndrome is not a condition that is "fixed" and can be forgotten. People who are touched by HLHS know that they are dealing with a life-long condition. At Baby Hearts Press we want to learn everything we can about HLHS and other heart defects so we can educate ourselves and our community to be the best advocates we can be. Please tell your friends about Baby Hearts Press and help us on our mission. Then you, too, can be a Friend of Baby Hearts Press.


Anna Jaworski


Anna Jaworski said...

What an uplifting and inspiring post! You obviously work and write from the heart. I'm proud to be by your side, as a BHP friend and cheerleader, as you continue and expand you journey!

Anna Jaworski said...

Actually, that comment was emailed to me by a friend of mine, Laura R. :-) She didn't know how to post the comment so I did it for her. Thanks, Laura!