"Hi Anna, is there a possibility if we can join hands with your initiative . . ." began a Facebook message that changed someone's life.
Farhan Ahmad and I communicated with one another on Saturday, just two days after I wrote the blog "Join or Die" and he wanted to know if I could help him. This is what it's all about, dear heart friends. It's all about us joining hands and helping one another.
Farhan Ahmad told me that he was the father of a little girl with a serious heart defect. After his daughter needed life-saving heart surgery, he realized (to his dismay) that there was no cardiac children's hospital close to home. He wondered how many other children in his country needed help who couldn't get that help simply because they lived too far away from a treatment facility and/or didn't have the money for such procedures.
". . . we are a not for profit organization, trying to build a free children cardiac hospital in Lahore, Pakistan," Farhan Ahmad wrote.
The amazing thing about the story is that everyone who reads this blog can help a needy child in Pakistan have a life-saving heart surgery. Simply go to this URL: https://www.facebook.com/chhri.org.pk and click Like. For every 500 Likes they get on Facebook, they will receive the funds to pay for a child's heart surgery.
That was what Farhan Ahmad wrote to me about just a handful of days ago. There were already over 400 Likes -- in fact, they were pretty close to 500, but they weren't there yet. They had already funded 14 children's surgeries through other donations. If we could get to 500 Likes, they would receive the funds they needed for another life-saving surgery.
I got busy! I wrote about this worthwhile cause on my Facebook page, I tweeted about it. I contacted everyone I thought might care and I watched the numbers climb.
Before the end of the day the Facebook page had well over 500 Likes. Another child saved. Countless lives touched.
This is what it's all about, dear friends. If we join hands, if we work together, if we love one another -- we can save lives.
Thanks to all of you who took the time to Like this page. Thank you for working together to help save a life. Please share this information with others. When they make it to 1000 Likes, they'll have yet another surgery paid for. It costs you nothing but a few precious moments . . . a few heartbeats . . . and the click of a computer key. If only everything in life were so simple!
Thursday, February 28, 2013
Thursday, February 21, 2013
Join or Die
Why is it so few people know that Congenital Heart Defects (CHDs) are the most common birth defect?
I think one of the reasons we, as a CHD community, have had trouble getting the word out is that we aren't working hard enough to work together. We are not as united as we need to be to make a real statement. We are too possessive of what work we've done and not open enough about embracing all of the groups that have been put together.
This just became apparent to me again yesterday when one person asked a heart mom to shut down a new group that had been made on Facebook due to the name used for the group. When people become possessive of names, there are problems. This is also a story I have heard over and over again through the years regarding the American Heart Association (AHA). Everyone associates the AHA with the heart. They've done a good job of that, but what they haven't done well, in my opinion, is reaching out to the CHD community. I heard from several parents that when they tried to start a group that had any semblance of the words "American," "Heart" and "Association" in it, they received communication from the AHA that they would be sued.
Over and over again I have seen bereaved parents start their own organization or fundraiser in their child's name rather than join in a group that has already been started. We are a splintered group. We are like an assortment of sticks scattered throughout a yard instead of a tightly wrapped bundle of sticks that could serve some kind of purpose. This divisiveness is hurting us. It's preventing us from getting the word out for the public to hear about CHDs.
We aren't the only group this has happened to. The autism group has suffered from the same infighting. Here's a URL that discusses their need to stop what they were doing and to start working together: http://www.disabilityscoop.com/2012/08/07/autism-end-to-infighting/16186/ In the URL, there was a call for a summit to bring all the splinter autism groups together to establish a series of joint goals. They realized that until they came together to address the issues facing families dealing with autism, individuals would suffer. They had to put aside their differences and work together for the good of the entire community.
I didn't find any one conference where it clearly addressed this issue, but I was stunned at how many autism conferences were easy to find for 2012 and 2013! This site: http://www.theautismeducationsite.com/2012/08/20/autism-conferences-in-2013/#jan was especially helpful for listing a great variety of conferences for the autism community.
Doing a similar search on Google for CHD conferences did not yield the same result. Individual conferences presented by a certain institution or group were visible, but on the first 3 pages of the Google search using the words "congenital heart defect conferences 2013" the only link that looked like a listing of helpful conferences was for physicians -- despite the fact that parents, schools and communities are impacted by CHDs just as much as they are by autism.
Some organizations in the CHD community seem to be reaching out to one another and working together. I just joined the Adult Congenital Heart Association (ACHA) and the Children's Heart Foundation (CHF) partly because I was delighted to see these groups working together! In fact, my family and the Cataldo family will be walking together in the Congenital Heart Walk - Central Texas next month. Here's a link to the event: http://congenitalheartwalk.kintera.org/faf/home/default.asp?ievent=1050109 This event is being sponsored by the ACHA and the CHF. Yes! Two groups working together! That's what we need more of if we're to be a strong presence capable of spreading the news about CHDs, options available to parents, the good news about how more people are surviving what were once-fatal heart defects and where the CHD community is. We are here! We are all over the world. It's time for us to join hands and reach out to one another in the spirit of giving, educating and providing hope.
Only then will we be successful in our mission of spreading awareness of CHDs. Benjamin Franklin said it best in a political cartoon published in the Pennsylvania Gazette on May 9, 1754. Join or Die were the three simple words on the cartoon depicting a snake cut into pieces and labeled with initials for the colonies. Join or Die my heart friends. Let us not be a snake cut into pieces with labels of our heart organizations. Instead, let us join together, work together and make a united effort to help the world and save lives.
I think one of the reasons we, as a CHD community, have had trouble getting the word out is that we aren't working hard enough to work together. We are not as united as we need to be to make a real statement. We are too possessive of what work we've done and not open enough about embracing all of the groups that have been put together.
This just became apparent to me again yesterday when one person asked a heart mom to shut down a new group that had been made on Facebook due to the name used for the group. When people become possessive of names, there are problems. This is also a story I have heard over and over again through the years regarding the American Heart Association (AHA). Everyone associates the AHA with the heart. They've done a good job of that, but what they haven't done well, in my opinion, is reaching out to the CHD community. I heard from several parents that when they tried to start a group that had any semblance of the words "American," "Heart" and "Association" in it, they received communication from the AHA that they would be sued.
Over and over again I have seen bereaved parents start their own organization or fundraiser in their child's name rather than join in a group that has already been started. We are a splintered group. We are like an assortment of sticks scattered throughout a yard instead of a tightly wrapped bundle of sticks that could serve some kind of purpose. This divisiveness is hurting us. It's preventing us from getting the word out for the public to hear about CHDs.
We aren't the only group this has happened to. The autism group has suffered from the same infighting. Here's a URL that discusses their need to stop what they were doing and to start working together: http://www.disabilityscoop.com/2012/08/07/autism-end-to-infighting/16186/ In the URL, there was a call for a summit to bring all the splinter autism groups together to establish a series of joint goals. They realized that until they came together to address the issues facing families dealing with autism, individuals would suffer. They had to put aside their differences and work together for the good of the entire community.
I didn't find any one conference where it clearly addressed this issue, but I was stunned at how many autism conferences were easy to find for 2012 and 2013! This site: http://www.theautismeducationsite.com/2012/08/20/autism-conferences-in-2013/#jan was especially helpful for listing a great variety of conferences for the autism community.
Doing a similar search on Google for CHD conferences did not yield the same result. Individual conferences presented by a certain institution or group were visible, but on the first 3 pages of the Google search using the words "congenital heart defect conferences 2013" the only link that looked like a listing of helpful conferences was for physicians -- despite the fact that parents, schools and communities are impacted by CHDs just as much as they are by autism.
Some organizations in the CHD community seem to be reaching out to one another and working together. I just joined the Adult Congenital Heart Association (ACHA) and the Children's Heart Foundation (CHF) partly because I was delighted to see these groups working together! In fact, my family and the Cataldo family will be walking together in the Congenital Heart Walk - Central Texas next month. Here's a link to the event: http://congenitalheartwalk.kintera.org/faf/home/default.asp?ievent=1050109 This event is being sponsored by the ACHA and the CHF. Yes! Two groups working together! That's what we need more of if we're to be a strong presence capable of spreading the news about CHDs, options available to parents, the good news about how more people are surviving what were once-fatal heart defects and where the CHD community is. We are here! We are all over the world. It's time for us to join hands and reach out to one another in the spirit of giving, educating and providing hope.
Only then will we be successful in our mission of spreading awareness of CHDs. Benjamin Franklin said it best in a political cartoon published in the Pennsylvania Gazette on May 9, 1754. Join or Die were the three simple words on the cartoon depicting a snake cut into pieces and labeled with initials for the colonies. Join or Die my heart friends. Let us not be a snake cut into pieces with labels of our heart organizations. Instead, let us join together, work together and make a united effort to help the world and save lives.
Thursday, February 14, 2013
Children's Heart Foundation, Advocacy & Free Give Away!
Greetings on this fine Valentine's Day AND Congenital Heart Defects Awareness Day!
Children's Heart Foundation
Yesterday was particularly exciting for me since I had the opportunity to meet the founders of the Children's Heart Foundation Texas Chapter. I had already met Sarah Berg, the President, but I hadn't met all of the other officers. They are an awesome group of women and all of them are heart moms like me. We all immediately hit it off and seemed to create an instant mutual admiration society.
The Children's Heart Foundation Texas Chapter held its Debut Event last night. The night completely satisfied the senses. There was live music (two lovely women who played harp and various flutes -- very interesting!), the food smelled heavenly, people were dressed beautifully, there were wines to taste and hugs were given away freely all night long.
I discovered quite a bit about the Children's Heart Foundation in preparing for my speech. I like how it came to be because of the birth of a very special little boy -- Sam Peterson. He is the son of Betsy and Steve Peterson and his premature death, due to his complex heart defects, caused them to start the Children's Heart Foundation. This is the only foundation in the United States created to fund congenital heart defect research. There are now 13 chapters of the Children's Heart Foundation scattered across the United States, but I imagine it won't be long before there are many more chapters than that.
It was a joy for me to speak at the Texas Debut Event. There was a lot of positive energy in the room and people really understood my message. Tears were shared, as were many hugs. People enjoyed seeing photos of my Alexander -- an 18 year old survivor of hypoplastic left heart syndrome (HLHS) and Katie Cataldo -- an 18 year old survivor of hypoplastic right heart syndrome (HRHS). It's a pity Alex couldn't be at the event, but he did the best thing he could to be part of it -- he sent me a photo I was permitted to share with the group. It was a photo of him after his Fontan revision where he was proudly displaying the very green tongue he had after eating nothing but green Jell-O after his open-heart surgery. He was starving and couldn't get enough of the Jell-O since he was only permitted to have clear fluids. I appreciated having that fun photo to share during what could have been a very somber speech. Alex, as usual, found a way to bring joy to the situation, even though he wasn't with us physically (he was at NYU-Poly where he's studying electrical engineering).
Advocacy
This event was an excellent way for me to continue my desire to be an advocate for the CHD community but I believe that I will have even greater ways to do that in the future. Just last week I formally joined the Adult Congenital Heart Association. The ACHA was founded years ago by a very dear friend, Karen Klein McNulty. Because of that, I have always felt an affinity to the ACHA, but I didn't formally join it until just last week.
Now that both of my sons are effectively out on their own, I have more time to attend to my passions. For many years I have acted as an advocate for the CHD community through my writing and speaking but now I believe I need to take a bolder step. I'm ready to fight for the rights of children and adults with CHDs. The ACHA has a special program in March where they will actually teach us how to lobby for the rights of those in the CHD community. We will be in Washington, D.C. and we will have a chance to talk to our lawmakers.
Here is where the interconnectedness of the universe is ever apparent to me. I signed up for this event last week. My son and new Vice President of Baby Hearts Press, Joseph Jaworski, will accompany me to this event to learn right beside me how he can also be an advocate. Last night I spoke to a group of people at the Children's Heart Foundation Texas Chapter Debut Event and one of the speakers who followed me was Heidi Cruz, wife of Ted Cruz, a Senator from Texas. Thanks to this event, I was able to hear Ms. Cruz speak about her and her husband's passions and their desire to help the same foundation I wish to be a part of! In addition to that, there was time for me to speak personally to Ms. Cruz and some of the men who work with her husband. We are now in the process of making plans for me to visit with my Senator either in Texas or in Washington, D.C. while I am there for the ACHA Lobby Day event! You can go here to register to attend yourself: http://congenitalheartadvocacyday.eventbrite.com/#
Free Give Away!
In honor of Congenital Heart Defect Awareness Day and in an effort to continue to educate the CHD community about congenital heart defects, Baby Hearts Press is offering a free Give Away! If Baby Hearts Press can get 1000 Likes on Facebook by midnight, February 14, 2013, BHP will give away a free lapel pin, a free poster and a free book. To register for the free give away all anyone has to do is 1) Go to this page: https://www.facebook.com/BabyHeartsPress?ref=ts&fref=ts
2) Like the page
3) Put a note on the page listing your or your child's heart defect
4) Jot a note about how you found out about Baby Hearts Press
5) If you are a supporter of the CHD community and don't have a heart defect, that's great! Just tell us a fun fact about yourself.
After posting a note on Facebook that we were doing this, amazing author Amanda Rose Adams offered to give away a free book herself! Amanda Rose Adams is the author of Heart Warriors: A Family Faces Congenital Heart Disease. You can read more about this wonderful book at Amazon.com: http://www.amazon.com/Heart-Warriors-Family-Congenital-Disease/dp/1933016809/ref=sr_1_1?ie=UTF8&qid=1360893081&sr=8-1&keywords=amanda+rose+adams
Amanda, like Anna Jaworski, is a heart mom with a story. All heart moms have stories -- as evidenced by The Heart of a Mother! What is heartwarming is how women from around the world have been able to tell their stories to others, to share their experiences and to help families around the world to heal from reading those stories and to feel part of a community, instead of feeling completely vulnerable and alone in a very scary world. We would like to thank Amanda for her generosity and compassion in sharing her book with friends of Baby Hearts Press.
Please help Baby Hearts Press get to 1000 Likes by midnight! With help from people all around the world Liking us, we will be able to spread awareness and educate others about congenital heart defects. Isn't that what Congenital Heart Defect Awareness Day is all about?
Children's Heart Foundation
Yesterday was particularly exciting for me since I had the opportunity to meet the founders of the Children's Heart Foundation Texas Chapter. I had already met Sarah Berg, the President, but I hadn't met all of the other officers. They are an awesome group of women and all of them are heart moms like me. We all immediately hit it off and seemed to create an instant mutual admiration society.
The Children's Heart Foundation Texas Chapter held its Debut Event last night. The night completely satisfied the senses. There was live music (two lovely women who played harp and various flutes -- very interesting!), the food smelled heavenly, people were dressed beautifully, there were wines to taste and hugs were given away freely all night long.
I discovered quite a bit about the Children's Heart Foundation in preparing for my speech. I like how it came to be because of the birth of a very special little boy -- Sam Peterson. He is the son of Betsy and Steve Peterson and his premature death, due to his complex heart defects, caused them to start the Children's Heart Foundation. This is the only foundation in the United States created to fund congenital heart defect research. There are now 13 chapters of the Children's Heart Foundation scattered across the United States, but I imagine it won't be long before there are many more chapters than that.
It was a joy for me to speak at the Texas Debut Event. There was a lot of positive energy in the room and people really understood my message. Tears were shared, as were many hugs. People enjoyed seeing photos of my Alexander -- an 18 year old survivor of hypoplastic left heart syndrome (HLHS) and Katie Cataldo -- an 18 year old survivor of hypoplastic right heart syndrome (HRHS). It's a pity Alex couldn't be at the event, but he did the best thing he could to be part of it -- he sent me a photo I was permitted to share with the group. It was a photo of him after his Fontan revision where he was proudly displaying the very green tongue he had after eating nothing but green Jell-O after his open-heart surgery. He was starving and couldn't get enough of the Jell-O since he was only permitted to have clear fluids. I appreciated having that fun photo to share during what could have been a very somber speech. Alex, as usual, found a way to bring joy to the situation, even though he wasn't with us physically (he was at NYU-Poly where he's studying electrical engineering).
Advocacy
This event was an excellent way for me to continue my desire to be an advocate for the CHD community but I believe that I will have even greater ways to do that in the future. Just last week I formally joined the Adult Congenital Heart Association. The ACHA was founded years ago by a very dear friend, Karen Klein McNulty. Because of that, I have always felt an affinity to the ACHA, but I didn't formally join it until just last week.
Now that both of my sons are effectively out on their own, I have more time to attend to my passions. For many years I have acted as an advocate for the CHD community through my writing and speaking but now I believe I need to take a bolder step. I'm ready to fight for the rights of children and adults with CHDs. The ACHA has a special program in March where they will actually teach us how to lobby for the rights of those in the CHD community. We will be in Washington, D.C. and we will have a chance to talk to our lawmakers.
Here is where the interconnectedness of the universe is ever apparent to me. I signed up for this event last week. My son and new Vice President of Baby Hearts Press, Joseph Jaworski, will accompany me to this event to learn right beside me how he can also be an advocate. Last night I spoke to a group of people at the Children's Heart Foundation Texas Chapter Debut Event and one of the speakers who followed me was Heidi Cruz, wife of Ted Cruz, a Senator from Texas. Thanks to this event, I was able to hear Ms. Cruz speak about her and her husband's passions and their desire to help the same foundation I wish to be a part of! In addition to that, there was time for me to speak personally to Ms. Cruz and some of the men who work with her husband. We are now in the process of making plans for me to visit with my Senator either in Texas or in Washington, D.C. while I am there for the ACHA Lobby Day event! You can go here to register to attend yourself: http://congenitalheartadvocacyday.eventbrite.com/#
Free Give Away!
In honor of Congenital Heart Defect Awareness Day and in an effort to continue to educate the CHD community about congenital heart defects, Baby Hearts Press is offering a free Give Away! If Baby Hearts Press can get 1000 Likes on Facebook by midnight, February 14, 2013, BHP will give away a free lapel pin, a free poster and a free book. To register for the free give away all anyone has to do is 1) Go to this page: https://www.facebook.com/BabyHeartsPress?ref=ts&fref=ts
2) Like the page
3) Put a note on the page listing your or your child's heart defect
4) Jot a note about how you found out about Baby Hearts Press
5) If you are a supporter of the CHD community and don't have a heart defect, that's great! Just tell us a fun fact about yourself.
After posting a note on Facebook that we were doing this, amazing author Amanda Rose Adams offered to give away a free book herself! Amanda Rose Adams is the author of Heart Warriors: A Family Faces Congenital Heart Disease. You can read more about this wonderful book at Amazon.com: http://www.amazon.com/Heart-Warriors-Family-Congenital-Disease/dp/1933016809/ref=sr_1_1?ie=UTF8&qid=1360893081&sr=8-1&keywords=amanda+rose+adams
Amanda, like Anna Jaworski, is a heart mom with a story. All heart moms have stories -- as evidenced by The Heart of a Mother! What is heartwarming is how women from around the world have been able to tell their stories to others, to share their experiences and to help families around the world to heal from reading those stories and to feel part of a community, instead of feeling completely vulnerable and alone in a very scary world. We would like to thank Amanda for her generosity and compassion in sharing her book with friends of Baby Hearts Press.
Please help Baby Hearts Press get to 1000 Likes by midnight! With help from people all around the world Liking us, we will be able to spread awareness and educate others about congenital heart defects. Isn't that what Congenital Heart Defect Awareness Day is all about?
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.
Sincerely,
Anna Jaworski
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.
Sincerely,
Anna Jaworski
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