Orlando Conference

Greetings, Heart Friends!

Last night was quite exciting for me. I gave the second part of a 3-part speech to my Toastmasters during our regularly scheduled Toastmasters meeting. It was about the need to find balance in our spiritual/religious life after our child is diagnosed with a congenital heart defect.

I have never spoken about this at a conference before. I want to thank Pepper Adair for giving me the chance to talk about this in Orlando. Pepper gave me a theme to work with when she hired me to deliver her keynote address to her audience in Miami, FL two years ago. The theme was on finding or creating balance in your life after your child's heart defect has been diagnosed. The next year (last year), when she asked me to speak to her parents in Panama City Beach, FL, she wanted to use the same theme. When she hired me to speak this year in Orlando, FL, I wasn't surprised when she told me the theme would be the same this year.

For Miami, my speech was largely about chores, normal developmental stages of development in children and how their normal development is enhanced when they are allowed to be contributing partners in a family. I gave suggestions for appropriate chores for different age groups and shared stories about children and their experiences with chores (both my own children and that of my friends). For Panama City Beach, we changed the focus so it wasn't quite so didactic and I had more stories and less "teaching" about normal development, although I still gave the handouts I had created the year before to help parents know what is normal and what isn't so they could address issues at appropriate times.

It has been so much fun to take a theme, create speeches for it and watch those speeches grow, change and blossom. I believe the speech I'm writing for this year's conference is the best one I've written yet. This year I'm focusing on finding/creating balance in 3 essential areas: 1) home, community and social network, 2) work/economic life and 3) spiritual/religious life. Because the economy is the way it is right now, I believe this speech is both timely and pertinent to today's parents. I hope the listeners enjoy hearing the speech as much as I've enjoyed writing it.

My second speech has been cut in time from 45 minutes to 30 minutes. I'll still be talking about Your Child's Bright Future -- just like in the 2 previous years, but this year it will be a little bit different. Pepper has also commissioned for a doctor who specializes in working with ACHDers to give a similar speech from the medical perspective. I can't wait to talk to the doctor who will be giving the medical speech. Pepper is so excited she's agreed to speak to the group. I'm hoping she'll talk to the young adults about the importance of taking their medicines, continuing with their regularly scheduled appointments and taking responsibility for their own healthcare so I don't have to dwell on that. I've already written a speech, but I might modify it after I speak to this doctor.

If any of you readers is going to be in the Orlando area on October 3rd, I hope you'll come to this conference. I think it's going to be very interesting and informative. I'm looking forward to hearing what the other speakers have to say. I'm also looking forward to seeing some old friends (I hope you're coming Bob and Linda!) and to making some new heart friends.

I hope everyone has a great week!

Sincerely,

Anna Jaworski
mom to Joey (18; heart healthy) and Alex (15; HLHS)
author of “Hypoplastic Left Heart Syndrome: A Handbook for Parents” and “My Brother Needs an Operation” and editor of “The Heart of a Mother” and “The Heart of a Father”
www.babyheartspress.com
www.congenitalheartdefects.com

Baby Hearts Press Special & Parent Conference

Greetings, Friends! It has been an exciting month! Last week all three of my guys celebrated a birthday. That means my oldest son (Joey) is now 18! Alexander, my "heart" son is now 15 and my husband is a year older and wiser, too. :-)

This has been an exciting summer since we released The Heart of a Father: Essays by Men Affected by Congenital Heart Defects. We have had book signings to help spread the news about the book, but now we've decided to offer an Internet special.

In order for people to own a library of resources from Baby Hearts Press, we are currently offering The Heart of a Mother, The Heart of a Father and My Brother Needs an Operation for the low price of $50 for all three! That's a $15 savings and only available at our home website: http://www.babyheartspress.com. You will not find discounts like that available anywhere else. Visit the website for more information.

We have also been working with Pepper Adair (American Heart Association Heart Heroes) on the parent conference for this year in Orlando, Florida. Here are the details:

When? October 3, 2009
Where? Orlando, Florida
What? Parent conference featuring experts in the field of congenital heart defects. This year will feature Anna Jaworski as the keynote speaker and other speakers from the medical community.
How Much Does it Cost? nothing! It's absolutely free, but you must register with Pepper Adair
How? Contact Pepper at heroes@heart.org or call her toll free at 888-255-1060 or if you're in Florida, you can call her directly at 561-697-6619

I'm really looking forward to the conference. Every year I put together a new speech and I've already started writing the keynote speech for this year. I'll be giving the keynote speech, one other speech (they'll have concurrent sessions this year in a variety of rooms) and I'll take part in a panel discussion.

I hope all my Florida friends will come to this event! Pepper and her staff always put on a fun conference. I'm always impressed with how hard the staff works to make it fun for the whole family. There are some whole family activities and then some special activities for the children while the parents listen to the other speakers.

I'll post more information on the conference as it becomes available to me.

The Twig Book Signing

Last weekend Bob Daigneault (Dad), Frank Jaworski and I drove to San Antonio to do a book signing at The Twig Book Shop. This is an adorable shop on Broadway in San Antonio. It is one of the exclusive bookstores that physically carries our books. Any book store can order The Heart of a Father: Essays by Men Affected by Congenital Heart Defects because it's in Ingram's database, but only a handful of indie bookstores currently carry our books.

Here are Frank and Dad at the table where we did the book signing:

Frank and Bob Daigneault (Dad) at the book signing table

Bob signing a book with Frank and Kevin watching

Several things made this book signing special. Claudia of The Twig really outdid herself by providing refreshments and making us feel welcome.

Refreshment Table & Welcome Sign for MLH and IMH

Mary Adair kindly sent out electronic flyers inviting members of her support group, Mended Little Hearts, to come to the book signing. Heather Collins of It's My Heart also let her members know about our signing.

Here is a photo of Heather's family:

Heather, Coleman and Kevin Collins

It was delightful to see people from the heart community come out in support of the book and us. Here is a photo of Brenda Cabaza (a nurse who works with Dr. Calhoon -- the surgeon who saved Alex's life):

Brenda Cabaza

One of the most wonderful things to happen at the book signing was for Dawn and Wayne Martin to show up! Dawn contributed to The Heart of a Mother and I hadn't seen her since we did a television interview nine years ago! I really enjoyed getting a chance to meet her husband for the first time, too. Here are some photos of us:

Frank, Wayne, Dawn and Anna (me)

Just Dawn and Anna (me)

Christy Lerma of Mended Little Hearts also showed up! It was wonderful to get a chance to meet her and talk to her about her son. Here is a photo of Christy, Dawn and me:

I would like to thank The Twig, all of the members of the heart community who showed up and Mary Adair for helping to make this book signing the success it was.

Book signing of The Heart of a Father: Essays by Men Affected by Congenital Heart Defects

Book signing of "The Heart of a Father"
by Anna Jaworski, Bob Daigneault and Frank Jaworski

The Twig Book Shop
Saturday, July 18th 1:00 - 3:00 p.m.
5005 Broadway St.
San Antonio, TX 78209-5793

Best Book Signing Ever!

Dear Friends:

I had the best book signing ever on July 3rd at Hill Country Bookstore in Georgetown. I've been doing book signings for many years now, so I have plenty of experiences for comparison! Let me tell you about why it was the best book signing ever . . .

First of all, the signing took place in the most darling bookstore you'd ever want to step inside. The bookstore in the movie "You've Got Mail" reminds me of this bookstore. But the one in "You've Got Mail" was in a big city. Hill Country Bookstore looks like it belongs in Mayberry, RFD, not a big city. :-) It's on the square in downtown Georgetown. Here are a couple of photos of the bookstore from the outside.


On the first Friday of every month, downtown Georgetown stays open a little later. Not every store stays open late, but the ones that do have signs on their doors or marquees that say "First Friday Participant." Some of the roads are blocked and a tent is set up. Musicians arrive and so do a lot of people. They set up lawn chairs under the trees, or claim one of the many benches available on the square. Some come with their dancing shoes on (this mainly means "boots" in Texas). Some visit a sweet bookstore named Hill Country Bookstore. At 8:00 the live music begins and there is dancing in the streets.

My book signing was scheduled for July 3rd -- the first Friday in July. I had no idea how much fun it would be to see everyone getting ready to have a good time! And little did I know that Margueritte (Hill Country Bookstore's owner) intended not to be outdone by the musicians outside!

Our book signing was scheduled from 6:00-8:00 p.m. When I arrived, to my delight, I saw a little blackboard outside the bookstore welcoming me and Poetic License. We were going to have a signing and live music!

Once inside the bookstore, I had a chance to chat briefly with Margueritte, the store's owner for the last 14 years. She made my father and me feel completely welcome and at ease. She set up a little table for us with two chairs comfortably close to the check-out area and in full view of the beautiful window facing the front of the store and people preparing for the festivities. We also had a perfect view of Poetic License!

I think what made this a perfect book signing is the fact that people who enjoy First Friday events are either locals or out-of-towners who heard about Georgetown from friends or family and who choose to come downtown to enjoy the festivities. These are people who want to meet other people and have a good time. Couple all of that with a welcoming bookstore owner who knows most of her customers by name, and who supports local artists such as Poetic License, and you're bound to have a great time.

(Dad and me at Hill Country Bookstore)

(Poetic License: Martha Pinto and Lissie Connolly)

So the set up was ideal. Beautiful bookstore, fun and welcoming people, live music . . . what more could you ask for? How about generous, warm and friendly customers?

Frequently at book signings, I feel that the customers wish I wasn't there. :-( I know that may sound mean to say, and I don't wish to be mean, but what I'm saying is that frequently customers don't know what to do when they see an author sitting at a table. It's so interesting to see how people respond! At two of the recent signings we had, the bookstore managers put us at the front of the store to be greeters. We were happy to do this, so we were surprised when people did everything they could not to be greeted! We weren't yelling, "Please buy our books." We were saying, "Hi! How are you?" and if people acted interested, then we'd tell them about our books. Many people would come in the store and duck their heads to avoid eye contact when we tried to greet them. This was disheartening. We knew we wouldn't sell tons of books; mostly we have signings just to get the word out, hoping that if someone has a child with a heart defect, or knows someone with a heart defect, they'll find our resources helpful.

At Hill Country Bookstore, you could tell that these customers knew how to talk to authors. They weren't afraid of us. They were happy to see us, to talk to us, and some even chose to buy our books! A number of people came over to us to tell us about a mother in Georgetown whose son had a heart transplant. She's a local celebrity because she has become an extremely strong advocate and has helped purchase AEDs (automatic external defibrillators) for local schools. In fact, as legend has it, one of the AEDs in the middle school was used to save a student's life! I was told over and over again that I need to meet Teri Lucas. This is something I hope to do in the near future.

At one point, some newly married friends showed up and I moved from behind my table to speak with them and give them a hug. They purchased a book and Dad and I autographed it for them. We chatted a few more minutes and when they left, I noticed two new things on our table. One thing was a tri-fold brochure for a local restaurant down the street. The other thing was a little napkin with two chocolate truffles on it! Just for me! Dad has his own little napkin with two truffles on it! The restaurant proprietor of Silver and Stone had quietly put the brochures and the truffles on the table while we were talking and left before I could thank her!

(Thank you for the truffles! I can't wait to take my husband to your restaurant some day!)

Martha and Lissie made beautiful music. They sang with acoustic guitars. They sang accompanied by a tambourine and some other gentle percussion instruments. Then they sang a capello. One little boy was captivated by their singing and I caught a photo of him.

The two hours flew. We met wonderful people, enjoyed beautiful music, ate delectable truffles and even spread the word that you don't have to feel alone if you have a child with a congenital heart defect. I didn't want this magical book signing to end! I came away feeling inspired, relaxed and happy.

We're scheduled to do a book signing at The Twig Book Shop on Broadway in San Antonio on July 18th. I am very excited about that signing because I've already been in touch with a lady who runs a support group in San Antonio and I'm hoping to meet some heart families. We'll be reading from our books and sharing stories. I hope I have cause to write about another perfect book signing after that.

July 18, 2009 book signing and reading by Frank Jaworski, Bob Daigneault and Anna Jaworski from 1-3 o'clock.

The Heart of a Father Update

Dear Friends:

I still can't believe it's done. :-) There were so many times I wondered if I'd ever be able to complete The Heart of a Father. I was so picky! I could have finished it dozens of times, but it never felt right. It seemed to be lacking something. So I held on and held off on publishing it.

I'm so glad I did.

Now it feels right! It looks right! It IS right! :-) Thanks, Dad! Without Dad, I'd still be wondering if I will ever finish the book! He was the key ingredient to me finding a way to finish the book.

I've been receiving emails from contributors and readers who are very happy with the book. It's not an easy read. Neither was The Heart of a Mother. These books are not books read for pleasure. They're read for comfort, for education and for inspiration, but not for pleasure. Reliving the times in the hospital or difficult times in our marriages due to the stress of dealing with a sick child on top of everything else -- those things aren't easy to read. But the most amazing thing happens when I write about my experiences or read the experiences of others. I feel a kinship, a connection, that I don't feel with anyone else. Instead of feeling isolated and bereft, I realize I belong to a very special group of warriors. This sense of belonging makes me stronger. It makes me actually feel capable.

Ironically, when I was in that situation (at the hospital mainly), I felt anything but capable. When Alex was in the hospital, I felt like a zombie. I couldn't remember anything. I felt so useless and ineffective. It was awful! That's why I couldn't wait until the catheter was taken out and I could change diapers, when the wounds healed enough that I could bathe Alex and when he was off the ventilator and I could feed my baby. Until I could be the hands-on mom I was used to being, I was a wreck. I hated for anyone to ask me how I was doing. I was fine as long as no one asked me that. I had a mask of composure that I was able to wear, but for some reason, when someone said, "Wow! You really seem to be holding up well!" or "How are you doing?" That's when the mask would slip and the tears would fill my eyes. I wasn't doing well; I was in agony. My baby was sick and I felt powerless to do anything about it.

Most days, I don't even think about those times. I'm raising a teenager. Oh yeah, he was born with a heart defect. Alex's heart defect is always there and I'm the mom who asks if meds have been taken and teeth brushed everyday, but I don't stress over Alex's heart defect anymore. I wondered, when we were in the throes of dealing with his condition, if I would ever have a morning where I didn't wake up and rush to his bedside afraid he might not be with me anymore. Would I ever go to sleep without thanking God for having one more day with my children and without tears accompanying my dreams?

The answer to both questions is "yes." I've had many days where I hardly think about Alex's heart defect. We're too busy with swim meets, robotic tournaments, Boy Scouts, Tae Kwon Do, art lessons, piano lessons. Yes. There were days that I just tumbled into bed too exhausted to worry about Alex. Too happy to let those thoughts infiltrate my mind. The days have come and I hope there will be many more.

The book is done. :-) Dads now have a say! Dads now have a voice! :-) The moms have told their stories and the dads have told their stories. Some of the men who wrote are husbands to the women who wrote for The Heart of a Mother, so some readers will have a chance to see how the children they read about are doing 10 years later. That was exciting for me. To watch these young heart heroes grow up and realize their potential. Wow. Those stories empower me. They give me hope that Alex will beat the odds and grow up to live a full life, too. I think all of us heart parents need that thread of hope.

We've done three book signings -- one in Austin, Waco and Killeen, Texas. We have two more scheduled for July -- one in Georgetown and one in San Antonio. If anyone else would like a book signing, please let me know. We've had two television interviews -- one with Dad and me in Austin and one with Jess McCain in Sacramento. Dad did an interview for the radio in Austin. A wonderful newspaper article has been written about David Nowell. It's been a busy time.

For the latest updates and links to television interviews and newspaper articles, check out our websites: www.heartfather.com or www.babyheartspress.com.

Have a great day!

Anna

Preparing Postcards!

I'm preparing postcards to announce the release of my latest book and to invite people to the San Antonio book signing which will take place in July. If you, or someone you know, would like to be invited to the San Antonio book signing, please let me know!

Sincerely,

Anna Jaworski
mom to Joey (17; heart healthy) and Alex (14; HLHS)
www.babyheartspress.com -- resources for the CHD community
www.congenitalheartdefects.com -- the Best site on the Internet for CHD information
www.centexacademy.com -- information about Alex's robotics team
author of "Hypoplastic Left Heart Syndrome: A Handbook for Parents" and
"My Brother Needs an Operation" and editor of "The Heart of a Mother"
and "The Heart of a Father" (publication date: June 15, 2009!)