I am so excited to announce that I am halfway through the line editing of the book! I have met my goal of cutting at least 10% and the book is much tighter and more succinct. My interior graphics artist is working on the first two chapters. I have already scheduled an appointment with my Vice President of Marketing, publicist Phil West and me to put together a marketing plan for the book. Everything seems to be moving so fast now!
Going through the book has brought back so many memories. I've known some of these contributors for many years and we've seen each other through some major life events. It's hard reliving some of the difficult times and inspiring reliving triumphant events. I find myself emotionally spent at the end of a day of editing. It is difficult sometimes to cut a single word or change a phrase when I know how much these essays mean to the contributors. I only pray that God is guiding me through this process to help illuminate the stories these gentlemen have been willing to share with the world. This is a most humbling experience for me. I feel a weight right now that I hope will be lifted when the book is completed and (hopefully) well received.
To all of you parents out there who feel you are alone in dealing with life raising a child with a congenital heart defect, please know you are in very good company. The Heart of a Mother and soon The Heart of a Father are two resources that will help you see you are not alone. The experience of raising a child with a heart defect is shared across religious, socio-economic, racial and physical boundaries. Regardless of the native language spoken, we CHD parents speak a common language. We know meanings of abbreviations like HLHS, SATs, EKG, ToF and more. We have all experienced hearing words from doctors and technicians that no parent should ever have to hear. We've all spent countless hours waiting for our children to return to our loving arms after surgery. These books help to illustrate the fact that we are not alone.
I hope all of you have a wonderful day and look forward to reading The Heart of a Father as much as I've enjoyed bringing it to you.
Wednesday, February 18, 2009
Tuesday, January 27, 2009
The Heart of a Father -- First Draft Complete!
Dear Heart Friends:
I have just returned from Staples where I printed and bound copies of the first draft of the book for my co-editor and for Dr. Fedderly, who will write the Foreword for the book. It's 200 pages without any clip art or photos. So one of my first jobs with the line editing is to cut, cut, cut. Michelle Jestice and I cut The Heart of a Mother by at least 10% twice before we were done. I think if I cut HOF by 10%, that will be a good start. I'm not sure I want to cut it by 10% twice. The Heart of a Mother was over 400 pages when I realized that I had to cut, cut, cut.
I have really had fun this week with finishing up my phone calls to the contributors. I still have 6 or 7 calls to make. It has been so much fun putting a voice to the essay. Or in one case, putting someone else's voice to the essay -- since one of our contributors is deaf and I had to use a special relay service to communicate with him. I am hoping that this contributor will sign his essay so we can make it available to other deaf readers in ASL. As a former teacher of the deaf, this is something very special to me -- I'll certainly be letting all my deaf friends know about it!
I appreciate those of you who left a note that you want a copy of the book. I know you won't be disappointed. These gentlemen have really shared some special stories, advice and wisdom. I only hope that my editing and organization does them justice.
I have just returned from Staples where I printed and bound copies of the first draft of the book for my co-editor and for Dr. Fedderly, who will write the Foreword for the book. It's 200 pages without any clip art or photos. So one of my first jobs with the line editing is to cut, cut, cut. Michelle Jestice and I cut The Heart of a Mother by at least 10% twice before we were done. I think if I cut HOF by 10%, that will be a good start. I'm not sure I want to cut it by 10% twice. The Heart of a Mother was over 400 pages when I realized that I had to cut, cut, cut.
I have really had fun this week with finishing up my phone calls to the contributors. I still have 6 or 7 calls to make. It has been so much fun putting a voice to the essay. Or in one case, putting someone else's voice to the essay -- since one of our contributors is deaf and I had to use a special relay service to communicate with him. I am hoping that this contributor will sign his essay so we can make it available to other deaf readers in ASL. As a former teacher of the deaf, this is something very special to me -- I'll certainly be letting all my deaf friends know about it!
I appreciate those of you who left a note that you want a copy of the book. I know you won't be disappointed. These gentlemen have really shared some special stories, advice and wisdom. I only hope that my editing and organization does them justice.
Wednesday, January 14, 2009
The Heart of a Father - Publication Date Set!
Greetings, friends! I have some very exciting news to report regarding The Heart of a Father. I finally received all of the essays I have been waiting for! We are still in the process of editing the essays, but now the book has all of the material I feel it needed to be complete. It feels good to finally be at this point.
I have set Fathers Day 2009 as our publication date. We need time to get the book to the printer, to receive it and then send it out to reviewers. We still need to create the back cover -- which will depend up quotes from the reviews we get from early readers. We are hoping to receive some pre-publication publicity and book reviews in magazines and newspapers. Sometimes it feels like putting the book together was a piece of cake compared to the tasks we have before us -- and we aren't quite done putting the book together yet!
I am excited that we have agreed upon the front cover and that I have hired an interior designer to help with inserting art and photos in the book. I really needed extra help putting this book together. I did almost everything myself with The Heart of a Mother (except for hiring an excellent editor to work with me -- Michelle Jestice), and it was extremely time-consuming. With all of the other things I'm involved in now (robotics coach, swim official, having a senior in high school and taking Alex to college 5 days a week), I'm afraid it would take me over a year to get everything together. With the help of my dad and Sue, my interior designer, I am hopeful we'll get the book to the printer in a much more timely manner.
Once we send the book to the printer, Sue will post a pre-order form on the website. I am eager to see who wants to order the book. I am hopeful the heart community will welcome this new resource which shares so many heartfelt stories, expert advice and downright insightful experiences of men from around the world.
Friday, November 7, 2008
The Heart of a Father
Over eight years ago I envisioned a book by men affected by congenital heart defects that would be a companion to The Heart of a Mother. I started with a handful of essays from men I had come to know over time, some had wives who had contributed to The Heart of a Mother, others were simply concerned fathers or grandfathers who found Baby Hearts Press and me. Now, finally, I believe we are coming close to finishing this project.
I have thought in the past that we were close and always something seemed to get in the way. This time last year I thought we would have the book out by Christmas. Then my grandmother fell ill, moved in with my father, got better, made it to my cousin's wedding, became sick again and then passed away in February. It has been a very difficult year for me. This Thanksgiving will be the first Thanksgiving in 8 years where Grandma isn't eating dinner at my house. My only consolation is knowing that she will be with us in spirit and that having my sister and her family, my family and my father present will kind of be a tribute to her. If it weren't for Grandma, none of us would be here. :-)
Dad is working very hard on the book with me since both of us are eager to complete this awesome project. We're still waiting on 3 essays but now I feel certain they will come. I have to believe they will finally be completed because I don't want to publish this book without them.
So that is where we are now. All but three chapters are completed. We have authors lined up to write the Introduction, the Preface and the Foreword. It's been fun reconnecting with the authors, sharing our progress with them and getting some updates. Our children are so beautiful and inspirational. The stories we have to share are going to help others in the CHD community. I only hope that Dad and I have done justice to the words these brave men have shared with us and kept their voice their own. One of my ultimate goals with the books I publish is to keep it real.
I was once interviewed by a reporter for Woman's World. I told her she could publish my story provided I got to okay the final version of the article. She had "Hollywood"ized my story creating a false history of what really happened. I wouldn't allow it to be published and I wondered how many of the stories I saw in the supermarket were distorted like she tried to distort mine. Our stories have enough drama in them. We don't need editors who are going to change what really happened just to sell more books or magazines.
These stories are written by real men. They may not be professional writers by trade, but they have opened up their hearts to share some of the most difficult moments of their lives -- or maybe some of the best moments of their lives. The book covers the gamut -- from births to celebrations of life to descriptions of the unthinkable -- losing a child. I look forward to sharing them with you all soon.
Sincerely,
Anna Jaworski
mom to Joey (17; heart healthy) and Alex (14; HLHS); wife to Frank
author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
editor and contributor to The Heart of a Mother
co-editor of The Heart of a Father (in progress)
www.babyheartspress.com
www.congenitalheartdefects.com
I have thought in the past that we were close and always something seemed to get in the way. This time last year I thought we would have the book out by Christmas. Then my grandmother fell ill, moved in with my father, got better, made it to my cousin's wedding, became sick again and then passed away in February. It has been a very difficult year for me. This Thanksgiving will be the first Thanksgiving in 8 years where Grandma isn't eating dinner at my house. My only consolation is knowing that she will be with us in spirit and that having my sister and her family, my family and my father present will kind of be a tribute to her. If it weren't for Grandma, none of us would be here. :-)
Dad is working very hard on the book with me since both of us are eager to complete this awesome project. We're still waiting on 3 essays but now I feel certain they will come. I have to believe they will finally be completed because I don't want to publish this book without them.
So that is where we are now. All but three chapters are completed. We have authors lined up to write the Introduction, the Preface and the Foreword. It's been fun reconnecting with the authors, sharing our progress with them and getting some updates. Our children are so beautiful and inspirational. The stories we have to share are going to help others in the CHD community. I only hope that Dad and I have done justice to the words these brave men have shared with us and kept their voice their own. One of my ultimate goals with the books I publish is to keep it real.
I was once interviewed by a reporter for Woman's World. I told her she could publish my story provided I got to okay the final version of the article. She had "Hollywood"ized my story creating a false history of what really happened. I wouldn't allow it to be published and I wondered how many of the stories I saw in the supermarket were distorted like she tried to distort mine. Our stories have enough drama in them. We don't need editors who are going to change what really happened just to sell more books or magazines.
These stories are written by real men. They may not be professional writers by trade, but they have opened up their hearts to share some of the most difficult moments of their lives -- or maybe some of the best moments of their lives. The book covers the gamut -- from births to celebrations of life to descriptions of the unthinkable -- losing a child. I look forward to sharing them with you all soon.
Sincerely,
Anna Jaworski
mom to Joey (17; heart healthy) and Alex (14; HLHS); wife to Frank
author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
editor and contributor to The Heart of a Mother
co-editor of The Heart of a Father (in progress)
www.babyheartspress.com
www.congenitalheartdefects.com
Tuesday, October 21, 2008
AHA Heart Heroes Conference -- Panama City, Florida
Here is a photo of my father and me at the American Heart Association Heart Heroes Conference in beautiful Panama City Beach, Florida. Professional photographer Jordan Owens was on hand to take photos of all of the families. What a treat!The conference was fantastic. I had a chance to see some former AHA members (Pauline and Gary) and Alex's former cardiologist, Dr. William Blanchard. A real treat was serving on a panel discussion with Dr. Blanchard and having some time to talk to him about Alex.
What an awesome audience! I really felt like all of us connected. During the breaks, I had a chance to meet many of the families and to hear many of their stories. Most notably, there was a mother there of triplets -- all with Tetralogy of Fallot! Two of them were at the conference and they looked healthy and happy (one was visiting with Grandma). Naturally, I saw a number of precious babies and darling toddlers. It does my heart good to see so many happy, healthy children. I know there is so much hope for these little ones.
I think the comment that made me the happiest came from two women who came up to me at the end of my Planning My Bright Future speech. One of the ladies told me that she had been trying to encourage her friend to let her daughter dance. After they heard me talk about Tanya and Donna, this mother decided to let her daughter, with Tetralogy of Fallot -- just like Tanya! -- take dance lessons. :-) That made my day.
It is always fascinating to me how many of us share similar stories. One mother came up to me in a break and mentioned how her child was also originally diagnosed with cystic fibrosis -- not once, but twice! Then the real diagnosis became apparent -- hypoplastic left heart syndrome. I think the reason we parents feel such a bond is because of the similarity of our stories, our emotions and the roller coaster ride we enter once our children are diagnosed.
I hope I am asked back to speak at the AHA Heart Heroes conference next year -- which I hear will be in sunny Orlando, Florida! I encourage all of you Floridians to put this conference on your calendar. Pepper Adair and her able group of helpers really know how to put on a terrific conference and I can guarantee you that a good time will be had by all.
Sincerely,
Anna Jaworski
Thanks to professional photographer, Jordan Owens for the photo of Dad and me! To schedule a sitting with Jordan, visit her website: http://www.jophoto.us
Wednesday, October 8, 2008
American Heart Association Conference
I am so excited to announce that I will be the keynote speaker at the American Heart Association Heart Heroes Conference in Panama City Beach, Florida on October 11, 2008. The title of my speech will be Raising a Child with a Congenital Heart Defect. It's the same title as last year's speech in Miami, but I wrote a new speech just for the occasion. Last year my speech was more didactic. This year my speech is more storytelling -- which is what I do best!
I'll also be giving a speech for another session. The title of this speech is Planning My Bright Future. I revised the speech I gave last year to include some new information. It's one of my favorite speeches to give because I tell some of my favorite stories in it. I love sharing success stories of people I've had the chance to come to know in the CHD world.
I'm eager to make some new friends in Panama City Beach. Attending heart conferences really keeps me connected to the CHD world in a special way. Every time I go to one conference, I find myself seeking out other conferences. I wondered if after Alex was older I would still think about his heart defect. I don't dwell on it like I did when he was younger, but I find myself wondering how my heart friends are doing and hoping that they are leading the same good quality of life that Alex is now. I guess attending these conferences makes me more hopeful than ever.
I'll also be giving a speech for another session. The title of this speech is Planning My Bright Future. I revised the speech I gave last year to include some new information. It's one of my favorite speeches to give because I tell some of my favorite stories in it. I love sharing success stories of people I've had the chance to come to know in the CHD world.
I'm eager to make some new friends in Panama City Beach. Attending heart conferences really keeps me connected to the CHD world in a special way. Every time I go to one conference, I find myself seeking out other conferences. I wondered if after Alex was older I would still think about his heart defect. I don't dwell on it like I did when he was younger, but I find myself wondering how my heart friends are doing and hoping that they are leading the same good quality of life that Alex is now. I guess attending these conferences makes me more hopeful than ever.
Friday, July 18, 2008
Skylar Got a Heart
Dear Friends of the Heart:
The last two months are a bit of a blur. Alexander and I have been conducting robotic summer camps and it's been all consuming. Joseph has been training for and attending swim meets. I had a birthday come and go. And amongst all of these things have been daily updates about Skylar.
A number of months ago I "met" Skylar through his grandparents. They called me when they discovered their unborn grandson would be born with hypoplastic left heart syndrome (HLHS). They purchased books, they talked to me on the phone and they wrote emails. I came to feel a part of this family. I prayed for them, for the baby and for all the people working with Skylar.
Little Skylar has had his Norwood and a number of other procedures. Sadly, the Norwood didn't take and a new heart became necessary in order for him to survive. Knowing how few hearts for babies are available, I worried for the family and prayed all the more.
One week after his parents decided to put him on the transplant list, a heart became available. I know, from having spoken to other heart parents, that this is a difficult decision. Basically you trade one set of problems (living with an imperfect heart) for another set of problems (living with a transplanted heart). What's worse, your child's chance for life is the result of another child losing his or her own. It's a bittersweet moment when the heart becomes available because you know that another family is grieving even while your own family is rejoicing.
What a tremendous gift one family has made to Skylar's family. They selflessly gave their loved child's heart to another family and gave Skylar a chance to live. Now Skylar has a chance to hit the terrible twos, to blow out the candles on his birthday cake, to learn how to ride a bike. Thanks to the caring and loving gift of a stranger, now Skylar has hope.
There is another sick HLHS baby out there that I've been praying for. Cooper is a sick little man. He, like Skylar, has endured too many surgeries for his young age. Like Skylar, he's suffering and fighting a good fight. He's hanging in there right now and just had surgery again today to try to help him survive. God Bless Cooper and his family. I know there are many people who care and pray that he makes it.
Going to swim meets, holding robotics camps and getting ready for summer vacations are all activities that make me forget about the daily concerns that come with living with a baby with HLHS. There was a time when I was in the hospital with Alex and I wondered if he'd be with me tomorrow. I was afraid to leave the hospital lest I receive a phone call that he'd taken a turn for the worse. Would I make it back to the hospital in time? How would I survive if my baby didn't?
I wondered, in those long days in the ICU, if Alex would lead a "normal" childhood. I wondered if he'd be able to ride a bike, roughhouse with his big brother, develop friendships and maybe even someday have a girlfriend. I wondered if he could beat the odds and what I needed to do to see to it that he did. I wondered if I'd ever go a day without thinking about whether he'd be with me the next morning when I woke up.
Time had been kind to me. After many sleepless nights and entire days filled with concern, I was rewarded with months and years of happy memories. There are still concerns at times. There always will be. But there are so many good times, so many times free from heart worries that I feel a need to let other heart parents know that things can get better and someday heart concerns won't consume your life.
Normal for us "heart" parents isn't normal for other parents. We appreciate the small things more than others do. We have a new baseline for what "difficult" or "unbearable" is. We know what really matters and lose patience with others who don't get it. Our eyes are open to the best and the worst that life has to offer. It's not easy and it's not the path that we would have chosen, but gaining wisdom isn't easy. When you have a heart child and you choose to love that child with all your might, and you pray for that child like there's no tomorrow and you believe with a faith that is far beyond yourself, then you become a different person. I'd like to think that all of us who go down that path are a little stronger, a little wiser and little more compassionate. I'd like to think that our children bring us closer to God.
Skylar got a heart. Miracles do happen. May God and the angels of heaven watch over Skylar and his family and may all who are touched by this young life witness this incredible miracle - a life reborn thanks to the kindness of strangers.
Don't take your organs to heaven. Heaven knows we need them here. Spread the word.
Peace be with you all.
Anna
The last two months are a bit of a blur. Alexander and I have been conducting robotic summer camps and it's been all consuming. Joseph has been training for and attending swim meets. I had a birthday come and go. And amongst all of these things have been daily updates about Skylar.
A number of months ago I "met" Skylar through his grandparents. They called me when they discovered their unborn grandson would be born with hypoplastic left heart syndrome (HLHS). They purchased books, they talked to me on the phone and they wrote emails. I came to feel a part of this family. I prayed for them, for the baby and for all the people working with Skylar.
Little Skylar has had his Norwood and a number of other procedures. Sadly, the Norwood didn't take and a new heart became necessary in order for him to survive. Knowing how few hearts for babies are available, I worried for the family and prayed all the more.
One week after his parents decided to put him on the transplant list, a heart became available. I know, from having spoken to other heart parents, that this is a difficult decision. Basically you trade one set of problems (living with an imperfect heart) for another set of problems (living with a transplanted heart). What's worse, your child's chance for life is the result of another child losing his or her own. It's a bittersweet moment when the heart becomes available because you know that another family is grieving even while your own family is rejoicing.
What a tremendous gift one family has made to Skylar's family. They selflessly gave their loved child's heart to another family and gave Skylar a chance to live. Now Skylar has a chance to hit the terrible twos, to blow out the candles on his birthday cake, to learn how to ride a bike. Thanks to the caring and loving gift of a stranger, now Skylar has hope.
There is another sick HLHS baby out there that I've been praying for. Cooper is a sick little man. He, like Skylar, has endured too many surgeries for his young age. Like Skylar, he's suffering and fighting a good fight. He's hanging in there right now and just had surgery again today to try to help him survive. God Bless Cooper and his family. I know there are many people who care and pray that he makes it.
Going to swim meets, holding robotics camps and getting ready for summer vacations are all activities that make me forget about the daily concerns that come with living with a baby with HLHS. There was a time when I was in the hospital with Alex and I wondered if he'd be with me tomorrow. I was afraid to leave the hospital lest I receive a phone call that he'd taken a turn for the worse. Would I make it back to the hospital in time? How would I survive if my baby didn't?
I wondered, in those long days in the ICU, if Alex would lead a "normal" childhood. I wondered if he'd be able to ride a bike, roughhouse with his big brother, develop friendships and maybe even someday have a girlfriend. I wondered if he could beat the odds and what I needed to do to see to it that he did. I wondered if I'd ever go a day without thinking about whether he'd be with me the next morning when I woke up.
Time had been kind to me. After many sleepless nights and entire days filled with concern, I was rewarded with months and years of happy memories. There are still concerns at times. There always will be. But there are so many good times, so many times free from heart worries that I feel a need to let other heart parents know that things can get better and someday heart concerns won't consume your life.
Normal for us "heart" parents isn't normal for other parents. We appreciate the small things more than others do. We have a new baseline for what "difficult" or "unbearable" is. We know what really matters and lose patience with others who don't get it. Our eyes are open to the best and the worst that life has to offer. It's not easy and it's not the path that we would have chosen, but gaining wisdom isn't easy. When you have a heart child and you choose to love that child with all your might, and you pray for that child like there's no tomorrow and you believe with a faith that is far beyond yourself, then you become a different person. I'd like to think that all of us who go down that path are a little stronger, a little wiser and little more compassionate. I'd like to think that our children bring us closer to God.
Skylar got a heart. Miracles do happen. May God and the angels of heaven watch over Skylar and his family and may all who are touched by this young life witness this incredible miracle - a life reborn thanks to the kindness of strangers.
Don't take your organs to heaven. Heaven knows we need them here. Spread the word.
Peace be with you all.
Anna
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