My friend's daughter died yesterday. She didn't have a heart defect, as so many of my friends' daughters have. It wasn't her heart that let her down. It was her heart and her spirit that made us love her.
My friend's daughter was a special needs child. A child who was abandoned. Unwanted by some but very much wanted by one very special lady. Dee Dee saw past Bethany's disabilities and fell in love with the spirit and heart of a warrior. Dee Dee was more than a nurse and a mother to Bethany. She adopted her legally but more than that, she made Bethany part of a world that would otherwise have forgotten her, discarded her like a broken doll. Dee Dee brought out Bethany's humanity and showed us all that her special little girl had something to share with the world and she would be the messenger to help Bethany deliver her message.
Bethany was paralyzed. She was blind. She couldn't talk like most people but she could communicate. Dee Dee loved Bethany. She made her dresses to match hers and her sister's. Bethany rode proudly in her wheelchair to church and other events. Bethany was part of our community and although there wasn't much that most of us could do for Bethany, we could acknowledge her. We could smile at her smiles and if we could see past the paraphenelia necessary to keep Bethany alive, then we could see an angel here on earth.
Bethany is no longer here to remind us of the fragility of life. She is no longer here to touch our hearts because of her courage. Doctors told Dee Dee that Bethany wouldn't survive, but Bethany had other plans. She beat the odds time and again. She made a mother tiger out of Dee Dee -- one of the strongest child advocates I know. Bethany taught Dee Dee what it means to fight and she fought the good fight.
Rest in heaven, sweet Bethany. Maybe now you can run and play, laugh and sing in a way you couldn't do here on earth. I hope that you can. But I also hope that you can send a rainbow Dee Dee's way, or maybe a butterfly or some kind of sign to let her know that part of you is still here and that part of you will be watching over her now. Dee Dee was your guardian angel for years, Bethany, but now it's your turn to be hers.
Monday, February 21, 2011
Tuesday, February 15, 2011
CHD Conference in Fort Worth on February 19, 2011
Greetings, Friends of the CHD Community!
Today I received a phone call from Kathy Grieser of Cook Children's Hospital. She is part of the planning committee for the very first congenital heart defect conference for parents at Cook Children's Hospital. I signed up for the conference a few weeks ago thanks to Facebook. I think it's great that we can use Facebook to let us know about events of interest to us. Here is the link for anyone else interested in attending this conference: Cook Children's CHD Family Conference
Kathy told me that she saw my books on the Internet and invited me to bring some to the conference. I'm glad I will have have my husband, my father and my son there to help me! We will be bringing books, DVDs and audio CDs of AHA conferences where I have spoken and bookmarks for everyone who attends. We will offer a one-day, in-person special: Any book 40% off or any 3 books for $35 (plus tax). This is a HUGE savings and will only be done in Fort Worth at the conference. We will not have the ability to process credit cards but we will accept cash, checks or payments from PayPal. We will have our computer but I'm not sure the hospital has Wi-Fi. I have a called to find out, but don't know the answer yet.
Paul Cardall will be the keynote speaker and he will also play piano for the conference attendees. I can't wait to meet him! He will also have his CDs available for sale at the conference.
There are special activities for the children and there are even teens who will be present. I'm glad Alex will not be the only teenager at the event. I think he's glad that I'll be attending the event as a participant and not as a speaker (telling stories on him!).
I hope to see some of my Internet friends at the event. Please check out the Facebook page for more information. You must RSVP to attend. I believe there are at least 80 people registered already! It should be a great crowd and a great day of activities!
Today I received a phone call from Kathy Grieser of Cook Children's Hospital. She is part of the planning committee for the very first congenital heart defect conference for parents at Cook Children's Hospital. I signed up for the conference a few weeks ago thanks to Facebook. I think it's great that we can use Facebook to let us know about events of interest to us. Here is the link for anyone else interested in attending this conference: Cook Children's CHD Family Conference
Kathy told me that she saw my books on the Internet and invited me to bring some to the conference. I'm glad I will have have my husband, my father and my son there to help me! We will be bringing books, DVDs and audio CDs of AHA conferences where I have spoken and bookmarks for everyone who attends. We will offer a one-day, in-person special: Any book 40% off or any 3 books for $35 (plus tax). This is a HUGE savings and will only be done in Fort Worth at the conference. We will not have the ability to process credit cards but we will accept cash, checks or payments from PayPal. We will have our computer but I'm not sure the hospital has Wi-Fi. I have a called to find out, but don't know the answer yet.
Paul Cardall will be the keynote speaker and he will also play piano for the conference attendees. I can't wait to meet him! He will also have his CDs available for sale at the conference.
There are special activities for the children and there are even teens who will be present. I'm glad Alex will not be the only teenager at the event. I think he's glad that I'll be attending the event as a participant and not as a speaker (telling stories on him!).
I hope to see some of my Internet friends at the event. Please check out the Facebook page for more information. You must RSVP to attend. I believe there are at least 80 people registered already! It should be a great crowd and a great day of activities!
Monday, February 14, 2011
Happy Congenital Heart Defect Awareness Day!
Greetings all Heart Friends and Family!
Today is Congenital Heart Defect Awareness Day. Today is the day we parents have chosen to request that states and countries recognize that Congenital Heart Defects are the NUMBER ONE birth defect! Most people who have not been affected by congenital heart defects are aware of that statistics.
According to the March of Dimes, about 1 in 125 children are born with a congenital heart defect but I have heard that the real statistic is probably closer to 1 in 100. The American Heart Association used to list at least 35 recognized congenital heart defects, but in looking at their revised webpage:
American Heart Association CHD Statistics
I see that they have modified that number to say there are 15 recognized congenital heart defects. I think they have broadened the scope of some of the heart defects to make it simpler for others to see where their heart defect is classified. Another interesting thing that the AHA did is change their wording of "congenital heart defect" to "congenital cardiovascular defects." I hope that in changing the wording they don't make it more difficult for others to find the information they need.
But what is in a name? William Shakespeare wrote, ""What's in a name? That which we call a rose
by any other name would smell as sweet." It doesn't really matter if we call something "congenital heart defect" or "congenital cardiovascular defect" as long as people can understand what is being discussed and can find the information they need.
I think it's a pity there isn't more public knowledge about congenital heart defects. It's up to us -- the parents, grandparents and people born with heart defects -- to let the world know about these fairly invisible defects so that others can support research and advocacy in the realm of congenital heart defects. There is no popular star who has been willing to come forward and claim congenital heart defects as their cause -- unlike Jerry Lewis (muscular dystrophy) or Mary Tyler Moore (diabetes) even though congenital heart defects do not discriminate. There have been stars who have been affected by heart defects, but no one has stepped forward to create a campaign of awareness. Instead it looks like that job has required a grassroots effort.
In that vein, I am here blogging about CHDs. There are many others doing the same. A dear friend of mine, Steve Catoe, used to have a wonderful blog called Adventures of a Funky Heart where he talked about current events in the CHD world and what it was like to be an adult with tricuspid atresia. He was a shining light in the CHD community and I was so sorry to hear he passed away last year. But there are plenty of other sites out there such as: Congenital Heart Defect Awareness, Nathan's Prayer: Hope for Children with Congenital Heart Defects or Paul Cardall: Living for Eden. There are websites with pages of free information such as Congenital Heart Defects.com, California Heart Connection: Handouts, Forms and Articles or National Heart, Lung and Blood Institute: Congenital Heart Defects to name a few. There are Facebook groups, Yahoo! groups, private listservs and public listservs available to help people connect.
The one thing we parents of children with heart defects want to know is that We Are Not Alone.
There are conferences to help parents and congenital heart defect survivors such as Heart Heroes Conference, the ACHA Conference and Palmetto Hearts CHD Conference. There are summer camps for children (see Congenital Heart Defects.com: Camps). There are movies that deal with congenital heart defects and videos on YouTube. There is information out there, we just don't have a celebrity spokesperson.
With over a million congenital heart defect survivors in the Unites States alone, CHDs affect literally millions -- possibly billions! -- of people worldwide.
I hope all of you have a terrific Congenital Heart Defects Awareness Day. Spread the word. Share an inspiring story and remind people of just how valuable their hearts are.
Sincerely,
Anna Jaworski
a CHD Heart Mom
Today is Congenital Heart Defect Awareness Day. Today is the day we parents have chosen to request that states and countries recognize that Congenital Heart Defects are the NUMBER ONE birth defect! Most people who have not been affected by congenital heart defects are aware of that statistics.
According to the March of Dimes, about 1 in 125 children are born with a congenital heart defect but I have heard that the real statistic is probably closer to 1 in 100. The American Heart Association used to list at least 35 recognized congenital heart defects, but in looking at their revised webpage:
American Heart Association CHD Statistics
I see that they have modified that number to say there are 15 recognized congenital heart defects. I think they have broadened the scope of some of the heart defects to make it simpler for others to see where their heart defect is classified. Another interesting thing that the AHA did is change their wording of "congenital heart defect" to "congenital cardiovascular defects." I hope that in changing the wording they don't make it more difficult for others to find the information they need.
But what is in a name? William Shakespeare wrote, ""What's in a name? That which we call a rose
by any other name would smell as sweet." It doesn't really matter if we call something "congenital heart defect" or "congenital cardiovascular defect" as long as people can understand what is being discussed and can find the information they need.
I think it's a pity there isn't more public knowledge about congenital heart defects. It's up to us -- the parents, grandparents and people born with heart defects -- to let the world know about these fairly invisible defects so that others can support research and advocacy in the realm of congenital heart defects. There is no popular star who has been willing to come forward and claim congenital heart defects as their cause -- unlike Jerry Lewis (muscular dystrophy) or Mary Tyler Moore (diabetes) even though congenital heart defects do not discriminate. There have been stars who have been affected by heart defects, but no one has stepped forward to create a campaign of awareness. Instead it looks like that job has required a grassroots effort.
In that vein, I am here blogging about CHDs. There are many others doing the same. A dear friend of mine, Steve Catoe, used to have a wonderful blog called Adventures of a Funky Heart where he talked about current events in the CHD world and what it was like to be an adult with tricuspid atresia. He was a shining light in the CHD community and I was so sorry to hear he passed away last year. But there are plenty of other sites out there such as: Congenital Heart Defect Awareness, Nathan's Prayer: Hope for Children with Congenital Heart Defects or Paul Cardall: Living for Eden. There are websites with pages of free information such as Congenital Heart Defects.com, California Heart Connection: Handouts, Forms and Articles or National Heart, Lung and Blood Institute: Congenital Heart Defects to name a few. There are Facebook groups, Yahoo! groups, private listservs and public listservs available to help people connect.
The one thing we parents of children with heart defects want to know is that We Are Not Alone.
There are conferences to help parents and congenital heart defect survivors such as Heart Heroes Conference, the ACHA Conference and Palmetto Hearts CHD Conference. There are summer camps for children (see Congenital Heart Defects.com: Camps). There are movies that deal with congenital heart defects and videos on YouTube. There is information out there, we just don't have a celebrity spokesperson.
With over a million congenital heart defect survivors in the Unites States alone, CHDs affect literally millions -- possibly billions! -- of people worldwide.
I hope all of you have a terrific Congenital Heart Defects Awareness Day. Spread the word. Share an inspiring story and remind people of just how valuable their hearts are.
Sincerely,
Anna Jaworski
a CHD Heart Mom
Tuesday, February 8, 2011
Heart Week
Greetings, Heart Friends! This is a very special week. February 14th, as well as being Valentine's Day, is also Congenital Heart Defect Awareness Day. All week long people around the world will be celebrating this special time. Many of us are counting our blessings that medical technology has been able to save our "heart children." Some of us are remembering special people we know of who were born with heart defects and are now angels watching over us.
During this Heart Week please consider talking to your family about organ donation. Many people do not discuss this important issue. This is an important topic for conversation. If something were to happen to you, would you want to donate your organs? Your eyes? Your bones? If you could save a life as yours was ending, would you?
Alexander would not be with me today if it were not for the kindness of others. Some people have donated blood to him. He had cadaver tissue at the ready during his first open-heart surgery (although he didn't end up needing it). We have friends whose children would not be here today were it not for the sacrifices other families made.
Kevin Kienlein, a contributor to "The Heart of a Father" is the most recent recipient of a transplant that I'm friends with. Kevin received the heart and lungs of a generous individual and is recovering today. What a miracle! Out of the depths of despair, one family found it in their hearts to give Kevin their daughter's heart and lungs and because of that, Kevin will soon be playing in his band, taking photographs and enjoying every breath he takes.
Happy Valentine's Day! Happy Congenital Heart Defect Awareness Day! Blessings to all of you who talk to your families and decide to give the gift of life to someone else.
During this Heart Week please consider talking to your family about organ donation. Many people do not discuss this important issue. This is an important topic for conversation. If something were to happen to you, would you want to donate your organs? Your eyes? Your bones? If you could save a life as yours was ending, would you?
Alexander would not be with me today if it were not for the kindness of others. Some people have donated blood to him. He had cadaver tissue at the ready during his first open-heart surgery (although he didn't end up needing it). We have friends whose children would not be here today were it not for the sacrifices other families made.
Kevin Kienlein, a contributor to "The Heart of a Father" is the most recent recipient of a transplant that I'm friends with. Kevin received the heart and lungs of a generous individual and is recovering today. What a miracle! Out of the depths of despair, one family found it in their hearts to give Kevin their daughter's heart and lungs and because of that, Kevin will soon be playing in his band, taking photographs and enjoying every breath he takes.
Happy Valentine's Day! Happy Congenital Heart Defect Awareness Day! Blessings to all of you who talk to your families and decide to give the gift of life to someone else.
Monday, August 23, 2010
Every Heart Has a Story
At 12:00 CST there will be an international blog-sharing event called "Every Heart Has a Story." I've never taken part in a blog sharing before, but this seemed like a fun thing to do.
One of the reasons I put together The Heart of a Mother and The Heart of a Father is because I knew that all of us heart moms, dads, grandmothers, grandfathers and survivors have a story to tell. I knew Alex's story was helping people all over the world, but sometimes people contacted me asking me questions about tetralogy of Fallot, tricuspid atresia, Shone's syndrome and other heart defects which had nothing to do with Alex. People asked me how I survived the hospitalizations, the surgeries and how surviving all of the trauma affected my marriage and faith. Luckily for me, I came to know people who could answer these questions and it is those people who wrote for my books and shared their stories. Blog sharing is the same concept -- except it happens right here on the Internet. One person after another links to their blog and BOOM! They've shared their story. Instantaneous sharing. Wow.
Alex's story began in 1994 when he was born with hypoplastic left heart syndrome. Most people will blog about finding out their child had a heart defect and the surgeries they've survived. Because Alex is sixteen years old, I'd rather not do that. I'd rather focus on where he is now.
On August 11th we celebrated Alexander's 16th birthday. He spent the day at Texas State Technical College where he is working towards an Associate's Degree in Robotics. It was the week before finals and he had three classes ending the next week.
After school, we drove home (it's about an hour's drive one way) and got a little snack before Toastmasters. I belong to Texas Stars Toastmasters and Alex was attending our meeting so we could take him to dinner following the meeting at his favorite restaurant -- a Japanese steak and hibachi restaurant called Nami's.
We had a lovely dinner at the hibachi grill. It's always so much fun to sit at the hibachi and take in the show. At Nami's the chef always does a neat trick with tossing an egg via spatula into his chef's hat, making an onion "volcano" and just generally impressing us with his culinary skills at creating a wonderful meal.
Friday night we had a birthday party for Alexander and he invited 13 boys over! Not all of the boys could make it, but I think we ended up with plenty of boys present. They had fun playing pool and video games. Two of the boys brought guitars and played some music for us. Alex and Ryan even broke out the gift Ryan bought and played a game of Magic. Although it was a bit noisy, it wasn't unruly. It was fun!
(l-r back: J.R., Alex, Nic, Ryan, Cheyne; l-r middle: Ryan, Max, Simon, Kyle, l-r front: Elliot, Philip)
I let Alexander invite the boys to sleep over and some of them did. Nic, Simon, Kyle and (little) Ryan had a robotics tournament the next day, so they couldn't spend the night but Cheyne, (big) Ryan, Philip, J.R., Max and Elliot could. I wonder if this will be the last time Alex has boys spend the night like this? Our children grow up way too fast. Alex and Elliot are already in college. I'm so glad he had this opportunity to bring his friends together.
Here are some photos of the boys having fun:
Philip, Max and Elliot bought Alex the silly "Sweet 16" birthday card -- which they intend to share with the next birthday boy who will turn 16! :-) It's going to be a running joke amongst this cool group of friends.
My wish for Alex is for him to continue to defy the odds regarding HLHS -- for him to continue to pursue his dreams (studying robotics and eventually engineering, and writing a sci-fi/fantasy book) and to maintain a close relationship with his family and friends. After all, if a person has his health, family and friends nearby, what more could he ask for?
One of the reasons I put together The Heart of a Mother and The Heart of a Father is because I knew that all of us heart moms, dads, grandmothers, grandfathers and survivors have a story to tell. I knew Alex's story was helping people all over the world, but sometimes people contacted me asking me questions about tetralogy of Fallot, tricuspid atresia, Shone's syndrome and other heart defects which had nothing to do with Alex. People asked me how I survived the hospitalizations, the surgeries and how surviving all of the trauma affected my marriage and faith. Luckily for me, I came to know people who could answer these questions and it is those people who wrote for my books and shared their stories. Blog sharing is the same concept -- except it happens right here on the Internet. One person after another links to their blog and BOOM! They've shared their story. Instantaneous sharing. Wow.
Alex's story began in 1994 when he was born with hypoplastic left heart syndrome. Most people will blog about finding out their child had a heart defect and the surgeries they've survived. Because Alex is sixteen years old, I'd rather not do that. I'd rather focus on where he is now.
On August 11th we celebrated Alexander's 16th birthday. He spent the day at Texas State Technical College where he is working towards an Associate's Degree in Robotics. It was the week before finals and he had three classes ending the next week.
After school, we drove home (it's about an hour's drive one way) and got a little snack before Toastmasters. I belong to Texas Stars Toastmasters and Alex was attending our meeting so we could take him to dinner following the meeting at his favorite restaurant -- a Japanese steak and hibachi restaurant called Nami's.
We had a lovely dinner at the hibachi grill. It's always so much fun to sit at the hibachi and take in the show. At Nami's the chef always does a neat trick with tossing an egg via spatula into his chef's hat, making an onion "volcano" and just generally impressing us with his culinary skills at creating a wonderful meal.
Friday night we had a birthday party for Alexander and he invited 13 boys over! Not all of the boys could make it, but I think we ended up with plenty of boys present. They had fun playing pool and video games. Two of the boys brought guitars and played some music for us. Alex and Ryan even broke out the gift Ryan bought and played a game of Magic. Although it was a bit noisy, it wasn't unruly. It was fun!
I let Alexander invite the boys to sleep over and some of them did. Nic, Simon, Kyle and (little) Ryan had a robotics tournament the next day, so they couldn't spend the night but Cheyne, (big) Ryan, Philip, J.R., Max and Elliot could. I wonder if this will be the last time Alex has boys spend the night like this? Our children grow up way too fast. Alex and Elliot are already in college. I'm so glad he had this opportunity to bring his friends together.
Here are some photos of the boys having fun:
Philip, Max and Elliot bought Alex the silly "Sweet 16" birthday card -- which they intend to share with the next birthday boy who will turn 16! :-) It's going to be a running joke amongst this cool group of friends.
My wish for Alex is for him to continue to defy the odds regarding HLHS -- for him to continue to pursue his dreams (studying robotics and eventually engineering, and writing a sci-fi/fantasy book) and to maintain a close relationship with his family and friends. After all, if a person has his health, family and friends nearby, what more could he ask for?
Tuesday, August 17, 2010
X Zone Radio Show
Today at 2 p.m. Eastern Time I will be doing a radio show with Rob McConnell called The X Zone. I am so excited to have the opportunity to talk to him about congenital heart defects (CHDs).
Just this summer I decided to purchase a marketing program for Baby Hearts Press. Since my educational training is in special education, I am weak in understanding how to best market the books and resources produced by Baby Hearts Press. Part of the marketing program I purchased includes opportunities to pitch story ideas to radio shows. After three tries, I finally got it right! I have taken a number of marketing workshops and they all stress the importance of having a good hook. This is something that seems to be a bit difficult for me -- making what I do sound relevant and important. Even though I know how important it is to advocate for the CHD community, I am not always successful at creating just the right pitch that others find interesting.
Timing is everything. I've given similar pitches over the years and have been fortunate enough to be interviewed on a number of radio shows and even a couple of television shows. All of the television show interviews involved new books coming out. Most of the radio show interviews involved Congenital Heart Defect Awareness Day or an event where I spoke. This is the first radio show for me to do that hasn't required a specific event for the coverage. I believe that there is more interest in congenital heart defects because many people are taking the time to spread awareness.
In July, a cross country biker, Nels Matson, stopped in Delaware County to meet Camden Cheshire -- a little boy with the same congenital heart defect he was born with. Nels Matson is on a quest to spread awareness about congenital heart defects and the way he has chosen to do so is to bike 2000 miles across the United States to raise funds for the Children's Heart Foundation. Meeting Nels was encouraging for the Cheshires since they had never met anyone else with their son's heart defect (total anomalous pulmonary return). His story was featured on the news in Philadelphia.
Shaun White, American snowboarder and skateboarder, did much to provide inspiration to the CHD community as he competed in the Olympics this winter. Born with tetralogy of Fallot, Shaun clearly demonstrated that having a congenital heart defect does not have to limit a person's ambitions. He brought home Gold medals for the United States in 2006 and 2010 for snowboarding. He has competed and brought home medals in both the Summer and Winter X Games in different sports.
Boston Med did a story about a couple having a baby with a congenital heart defect in July 2010. The father of the baby was a soldier who had been deployed to Iraq. It appears the baby is doing well.
In 2004, Alan Rickman and Mos Def starred in a wonderful made-for-television movie, Something the Lord Made. This movie shows the relationship between Dr. Alfred Blalock and Vivien Thomas -- two gentlemen instrumental in developing a protocol for saving "blue babies." The movie won a number of awards, including three Emmy awards, two Golden Globe nominations, two Black Reel awards, an NAACP Image Award, a Directors Guild of America award and a Writers Guild of America award. The movie was based on an award-winning magazine article featured in the Washingtonian by Katie McCabe. The article also spurred a public television documentary, Partners of the Heart.
Congenital heart defects are the Number One birth defect and much more common than people realize. In 2003, John Ritter passed away due to an undiagnosed congenital heart defect (aortic dissection). Sadly, a 12-year old boy and 4-year old boy passed away at Disney, after riding certain rollercoasters with sudden accelerations and extreme forces. Both boys had undiagnosed heart defects. Of course there are far too many stories of fit athletes who suddenly pass away on the basketball court, football field or track -- only to discover that some had cardiomyopathy -- an enlargement of the heart that, if left untreated, can be fatal.
Currently there are a number of organizations striving to make the public aware of this birth defect. There are over a million people in the United States alone who are CHD survivors and the number is growing. My son is one of those survivors. He turned sixteen last week. He is my inspiration and it is because of Alex that I write and publish books through Baby Hearts Press.
I hope you all will tune in to the X Zone Radio show later today. Here is the link to the X Zone Radio Show: http://www.xzonetv.com/. If you miss the program, there are podcasts of previous shows available at this website: http://itunes.apple.com/podcast/the-x-zone-radio-show/id295327298.
Thanks to all of my Facebook friends who gave me suggestions on questions to ask/answer. I think I came up with an interesting set of questions and answers thanks to your input. I hope some of you will call in!
Just this summer I decided to purchase a marketing program for Baby Hearts Press. Since my educational training is in special education, I am weak in understanding how to best market the books and resources produced by Baby Hearts Press. Part of the marketing program I purchased includes opportunities to pitch story ideas to radio shows. After three tries, I finally got it right! I have taken a number of marketing workshops and they all stress the importance of having a good hook. This is something that seems to be a bit difficult for me -- making what I do sound relevant and important. Even though I know how important it is to advocate for the CHD community, I am not always successful at creating just the right pitch that others find interesting.
Timing is everything. I've given similar pitches over the years and have been fortunate enough to be interviewed on a number of radio shows and even a couple of television shows. All of the television show interviews involved new books coming out. Most of the radio show interviews involved Congenital Heart Defect Awareness Day or an event where I spoke. This is the first radio show for me to do that hasn't required a specific event for the coverage. I believe that there is more interest in congenital heart defects because many people are taking the time to spread awareness.
In July, a cross country biker, Nels Matson, stopped in Delaware County to meet Camden Cheshire -- a little boy with the same congenital heart defect he was born with. Nels Matson is on a quest to spread awareness about congenital heart defects and the way he has chosen to do so is to bike 2000 miles across the United States to raise funds for the Children's Heart Foundation. Meeting Nels was encouraging for the Cheshires since they had never met anyone else with their son's heart defect (total anomalous pulmonary return). His story was featured on the news in Philadelphia.
Shaun White, American snowboarder and skateboarder, did much to provide inspiration to the CHD community as he competed in the Olympics this winter. Born with tetralogy of Fallot, Shaun clearly demonstrated that having a congenital heart defect does not have to limit a person's ambitions. He brought home Gold medals for the United States in 2006 and 2010 for snowboarding. He has competed and brought home medals in both the Summer and Winter X Games in different sports.
Boston Med did a story about a couple having a baby with a congenital heart defect in July 2010. The father of the baby was a soldier who had been deployed to Iraq. It appears the baby is doing well.
In 2004, Alan Rickman and Mos Def starred in a wonderful made-for-television movie, Something the Lord Made. This movie shows the relationship between Dr. Alfred Blalock and Vivien Thomas -- two gentlemen instrumental in developing a protocol for saving "blue babies." The movie won a number of awards, including three Emmy awards, two Golden Globe nominations, two Black Reel awards, an NAACP Image Award, a Directors Guild of America award and a Writers Guild of America award. The movie was based on an award-winning magazine article featured in the Washingtonian by Katie McCabe. The article also spurred a public television documentary, Partners of the Heart.
Congenital heart defects are the Number One birth defect and much more common than people realize. In 2003, John Ritter passed away due to an undiagnosed congenital heart defect (aortic dissection). Sadly, a 12-year old boy and 4-year old boy passed away at Disney, after riding certain rollercoasters with sudden accelerations and extreme forces. Both boys had undiagnosed heart defects. Of course there are far too many stories of fit athletes who suddenly pass away on the basketball court, football field or track -- only to discover that some had cardiomyopathy -- an enlargement of the heart that, if left untreated, can be fatal.
Currently there are a number of organizations striving to make the public aware of this birth defect. There are over a million people in the United States alone who are CHD survivors and the number is growing. My son is one of those survivors. He turned sixteen last week. He is my inspiration and it is because of Alex that I write and publish books through Baby Hearts Press.
I hope you all will tune in to the X Zone Radio show later today. Here is the link to the X Zone Radio Show: http://www.xzonetv.com/. If you miss the program, there are podcasts of previous shows available at this website: http://itunes.apple.com/podcast/the-x-zone-radio-show/id295327298.
Thanks to all of my Facebook friends who gave me suggestions on questions to ask/answer. I think I came up with an interesting set of questions and answers thanks to your input. I hope some of you will call in!
Wednesday, June 30, 2010
Living on Borrowed Time?
Greetings Friends of the Heart!
Tonight I am sitting at McLennan Community College waiting for Alex. Alex was born with a congenital heart defect known as hypoplastic left heart syndrome (or HLHS for short) way back in 1994. In August Alex will turn 16 years of age.
Sometimes I feel like Alex is living on borrowed time. Then again, sometimes I feel that I am, too.
When Alex was born, his father and I both felt something was wrong. For two months we took him to ER doctors, the pedicatrician, lactation consultants and Newborn Follow-Up. Never yellow enough for the billi lights nor sick enough to be admitted, he coasted along with me keeping a journal of all of the dirty and wet diapers he made, how many times I nursed him and how often I gave him sunbaths (to rid his body of the "breastmilk jaundice") while my husband asked everyone he worked with (he was an ER nurse) to look at Alex to see if they felt the same concern he did. It wasn't until Alex's second-month well-baby check up that we were told something was seriously wrong. He was admitted. The next day Alex and I were in an ambulance flying down I-35 toward University Hospital in San Antonio.
"He has a 5% chance of surviving the surgery. I'd just take him home to love him for what little time he has left." This was the advice given to us by Alex's cardio-thoracic surgeon and echoed by his pediatric cardiologist.
When he survived the first open-heart surgery, we were told he only had a 25% chance of making it to age 5. Alex is 15. He's beaten the odds time and again.
Is he living on borrowed time?
When I was a little girl, my mother said I went through a period in infancy where they were worried because I wasn't gaining enough weight. I wonder if I was a Failure-to-Thrive baby like Alex? I don't believe that term was used with my mother way back in 1963. Instead, I was admitted to the hospital and the formula my mother used with me was changed until I seemed to do better and Mom and Dad were told they could take me home.
As a little girl I remember hearing my grandmother talking to my mother. "She just a little angel," my grandmother said in a rather hushed tone to my mother (thinking I couldn't hear them). "You know the good die young. She's probably going to die young."
Why my mother and grandmother had that conversation more than once where I could hear it, I'll never understand. I felt like most of my life I was living on borrowed time. I remember rushing to do things because I was afraid I would die young and miss the opportunity.
Conscious of this, I've tried to NEVER make Alex feel this way and yet, I see him rushing to do things, just like I used to. Right now he is 15 years old and taking 4 college classes this summer (including this chemistry night class) as well as two homeschool classes (American history and Driver's Ed) because he wants to graduate a year early. He has dreams and plans and he always has.
Maybe when you feel that you might be living on borrowed time, it makes you use your time a little more wisely. Alex is always seizing the opportunity to be with friends, to learn something new and to write, write, write. Although he is studying robotics at Texas State Technical College, he has dreams of writing books, too. He belongs to a writers' group in Austin, Texas which has meetings twice a month. This night class has taken some time away from his writers' group (The Slug Tribe), but it hasn't stopped him from writing.
Alex is a prolific writer. He writes for FanFiction under a pseudonym (UchihaLord15). He has about six stories going and has over 200 fans! He has over 30 chapters online. But in addition to this, he is working on two science fiction/fantasy books. He knows he still has a long way to go to become the writer he dreams of being, but he doesn't let that stop him from writing, reading and sharing his work with others.
Alex has done more with his 15 years on this earth than many adults I know. He is a daily inspiration to me, although he tires of hearing that. He would rather talk about Manga, Bleach or one of the stories he's working on. He lives very fully in the moment.
Sometimes I think living on borrowed time is actually a blessing. We don't neglect to say "I love you" often. I may not have a heart defect like Alex, but I know my heart and his are somehow connected and if anything happens to him, it will affect me profoundly. Maybe that's why I cherish our drives to Waco everyday. It's a bit tiresome driving about an hour one way M-F in the heat of the Texas summer, but I wouldn't trade our talks in the car, seeing him sleep next to me when he's tired from his night class (we usually get home between 10 and 11 p.m.) or our little naps in the afternoon -- like the one we took yesterday during a surprise rainstorm. I think that living on borrowed time just makes us appreciate all these things a little more.
Tonight I am sitting at McLennan Community College waiting for Alex. Alex was born with a congenital heart defect known as hypoplastic left heart syndrome (or HLHS for short) way back in 1994. In August Alex will turn 16 years of age.
Sometimes I feel like Alex is living on borrowed time. Then again, sometimes I feel that I am, too.
When Alex was born, his father and I both felt something was wrong. For two months we took him to ER doctors, the pedicatrician, lactation consultants and Newborn Follow-Up. Never yellow enough for the billi lights nor sick enough to be admitted, he coasted along with me keeping a journal of all of the dirty and wet diapers he made, how many times I nursed him and how often I gave him sunbaths (to rid his body of the "breastmilk jaundice") while my husband asked everyone he worked with (he was an ER nurse) to look at Alex to see if they felt the same concern he did. It wasn't until Alex's second-month well-baby check up that we were told something was seriously wrong. He was admitted. The next day Alex and I were in an ambulance flying down I-35 toward University Hospital in San Antonio.
"He has a 5% chance of surviving the surgery. I'd just take him home to love him for what little time he has left." This was the advice given to us by Alex's cardio-thoracic surgeon and echoed by his pediatric cardiologist.
When he survived the first open-heart surgery, we were told he only had a 25% chance of making it to age 5. Alex is 15. He's beaten the odds time and again.
Is he living on borrowed time?
When I was a little girl, my mother said I went through a period in infancy where they were worried because I wasn't gaining enough weight. I wonder if I was a Failure-to-Thrive baby like Alex? I don't believe that term was used with my mother way back in 1963. Instead, I was admitted to the hospital and the formula my mother used with me was changed until I seemed to do better and Mom and Dad were told they could take me home.
As a little girl I remember hearing my grandmother talking to my mother. "She just a little angel," my grandmother said in a rather hushed tone to my mother (thinking I couldn't hear them). "You know the good die young. She's probably going to die young."
Why my mother and grandmother had that conversation more than once where I could hear it, I'll never understand. I felt like most of my life I was living on borrowed time. I remember rushing to do things because I was afraid I would die young and miss the opportunity.
Conscious of this, I've tried to NEVER make Alex feel this way and yet, I see him rushing to do things, just like I used to. Right now he is 15 years old and taking 4 college classes this summer (including this chemistry night class) as well as two homeschool classes (American history and Driver's Ed) because he wants to graduate a year early. He has dreams and plans and he always has.
Maybe when you feel that you might be living on borrowed time, it makes you use your time a little more wisely. Alex is always seizing the opportunity to be with friends, to learn something new and to write, write, write. Although he is studying robotics at Texas State Technical College, he has dreams of writing books, too. He belongs to a writers' group in Austin, Texas which has meetings twice a month. This night class has taken some time away from his writers' group (The Slug Tribe), but it hasn't stopped him from writing.
Alex is a prolific writer. He writes for FanFiction under a pseudonym (UchihaLord15). He has about six stories going and has over 200 fans! He has over 30 chapters online. But in addition to this, he is working on two science fiction/fantasy books. He knows he still has a long way to go to become the writer he dreams of being, but he doesn't let that stop him from writing, reading and sharing his work with others.
Alex has done more with his 15 years on this earth than many adults I know. He is a daily inspiration to me, although he tires of hearing that. He would rather talk about Manga, Bleach or one of the stories he's working on. He lives very fully in the moment.
Sometimes I think living on borrowed time is actually a blessing. We don't neglect to say "I love you" often. I may not have a heart defect like Alex, but I know my heart and his are somehow connected and if anything happens to him, it will affect me profoundly. Maybe that's why I cherish our drives to Waco everyday. It's a bit tiresome driving about an hour one way M-F in the heat of the Texas summer, but I wouldn't trade our talks in the car, seeing him sleep next to me when he's tired from his night class (we usually get home between 10 and 11 p.m.) or our little naps in the afternoon -- like the one we took yesterday during a surprise rainstorm. I think that living on borrowed time just makes us appreciate all these things a little more.
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