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.
Tuesday, February 8, 2011
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.
Monday, June 21, 2010
Congenital Heart Defect Documentary
Greetings CHD Friends and Family! I hope everyone had a terrific Fathers' Day. I know my father and the father of my children really seemed to enjoy the weekend.
Today I am excited to write about a new project I just found out about thanks to Jill Sorensen (a contributor to The Heart of a Mother and a Facebook friend). Jill sent me a link to a sample of a documentary being produced to inform the world about congenital heart defects.
Here is a link to the documentary
http://www.congenitalheartdocumentary.com/
The part of the documentary that is available to see at the link above is very well done. I was impressed with the breadth and depth of coverage conducted in such a brief time span. I really felt that most of the most important issues we face in the CHD community were covered, although this documentary leaves an open door for more documentaries about congenital heart defects to be created.
At the end of the video is an email address if you want to get more information. Naturally I wrote to Betsy to tell her how excited I was about the project and to see if I could somehow get involved with the project. I spent over an hour talking to Betsy about this monumental project today.
Are you interested in getting involved? If so, you can send a photograph of yourself (if you are an ACHDer), your child or grandchild born with a congenital heart defect for a special part of the documentary which will feature snapshots of our CHD members. I will be sending a photograph of Alex for them to include once I decide which one I want to use! If you would like for your photo to be considered, please send a jpeg to elisa@tmktv.com along with a description of the person's heart defect and a line stating that you give the Children's Heart Foundation permission to use the photo in their CHD documentary.
Interested in helping the Children's Heart Foundation finish their project? Although over half of the funding needed for this project has already been procured, they haven't reached their goal yet. If you are interested in contributing to the project financially, you can visit http://www.childrensheartfoundation.org/ and there are a variety of ways you can give to this non-profit organization. If you want the money to specifically go to the documentary project, you will need to state this in the memo section of your check (if you mail them a check) or in the Additional Information / Comments section of the online giving page. (Just click on the Donate Now! tab at the top of the home page to donate funds to this worthy enterprise.)
I imagine most people have no idea that congenital heart defects are the #1 Birth Defect. I know I was surprised to discover this fact years ago. Why don't people know about this? I think we haven't done as good a job informing the public about the pervasiveness of this birth defect as we could. For the most part, it is a "hidden" defect and it is rather easy for our members to disguise the fact that they have had to endure open-heart procedures, use pacemakers or other assistive devices because they usually are not visible. This means that the public is rather ignorant about the high percentage of children born with congenital heart defects and the even higher percentage of individuals now living to adulthood with their heart defects. It's up to us to inform the public about CHDs, what they are and how they impact our lives.
I hope you'll take some time to view this documentary and if you agree, as I do, that it is a worthwhile project, then I hope you will contribute to the cause financially. If every member of the CHD community gave just a few dollars, the Children's Heart Foundation would have no difficulty finishing this project and getting it out there to spread, not only the news about congenital heart defects, but more importantly -- the HOPE that is available to those born with CHDs today.
Today I am excited to write about a new project I just found out about thanks to Jill Sorensen (a contributor to The Heart of a Mother and a Facebook friend). Jill sent me a link to a sample of a documentary being produced to inform the world about congenital heart defects.
Here is a link to the documentary
http://www.congenitalheartdocumentary.com/
The part of the documentary that is available to see at the link above is very well done. I was impressed with the breadth and depth of coverage conducted in such a brief time span. I really felt that most of the most important issues we face in the CHD community were covered, although this documentary leaves an open door for more documentaries about congenital heart defects to be created.
At the end of the video is an email address if you want to get more information. Naturally I wrote to Betsy to tell her how excited I was about the project and to see if I could somehow get involved with the project. I spent over an hour talking to Betsy about this monumental project today.
Are you interested in getting involved? If so, you can send a photograph of yourself (if you are an ACHDer), your child or grandchild born with a congenital heart defect for a special part of the documentary which will feature snapshots of our CHD members. I will be sending a photograph of Alex for them to include once I decide which one I want to use! If you would like for your photo to be considered, please send a jpeg to elisa@tmktv.com along with a description of the person's heart defect and a line stating that you give the Children's Heart Foundation permission to use the photo in their CHD documentary.
Interested in helping the Children's Heart Foundation finish their project? Although over half of the funding needed for this project has already been procured, they haven't reached their goal yet. If you are interested in contributing to the project financially, you can visit http://www.childrensheartfoundation.org/ and there are a variety of ways you can give to this non-profit organization. If you want the money to specifically go to the documentary project, you will need to state this in the memo section of your check (if you mail them a check) or in the Additional Information / Comments section of the online giving page. (Just click on the Donate Now! tab at the top of the home page to donate funds to this worthy enterprise.)
I imagine most people have no idea that congenital heart defects are the #1 Birth Defect. I know I was surprised to discover this fact years ago. Why don't people know about this? I think we haven't done as good a job informing the public about the pervasiveness of this birth defect as we could. For the most part, it is a "hidden" defect and it is rather easy for our members to disguise the fact that they have had to endure open-heart procedures, use pacemakers or other assistive devices because they usually are not visible. This means that the public is rather ignorant about the high percentage of children born with congenital heart defects and the even higher percentage of individuals now living to adulthood with their heart defects. It's up to us to inform the public about CHDs, what they are and how they impact our lives.
I hope you'll take some time to view this documentary and if you agree, as I do, that it is a worthwhile project, then I hope you will contribute to the cause financially. If every member of the CHD community gave just a few dollars, the Children's Heart Foundation would have no difficulty finishing this project and getting it out there to spread, not only the news about congenital heart defects, but more importantly -- the HOPE that is available to those born with CHDs today.
Thursday, June 10, 2010
June Special!
I am very excited to announce we have a June Special -- just in time for Fathers' Day! From June 7th to June 27th we are offering The Heart of a Father for half price! Our regular price of $20 is cut in half to just $10! What a perfect Fathers' Day gift for the father or grandfather of a child with a congenital heart defect!
This special is only available through the Baby Hearts Press website (http://www.babyheartspress.com) so hurry and order your copy today!
This special is only available through the Baby Hearts Press website (http://www.babyheartspress.com) so hurry and order your copy today!
Saturday, May 1, 2010
May News
Greetings, Friends! It's hard to believe that it's already May 1st! Happy Spring from sunny Texas!
First of all, I have some exciting news: our May Special is "The Heart of a Mother" for half price! That means that instead of the regular price of $25.00, for the month of May, this one-of-a-kind book will be available for only $12.50!
I am also going to use the month of May to catch up with former contributors to "The Heart of a Mother." I will be letting you read excerpts from their essays and an update on how those children are doing today. I will start with one of my own essays.
My essay, Developmental Delays - Speech and Language, detailed Alex's journey after his second open-heart surgery left him with paralyzed vocal cords and a partially paralyzed diaphragm. I wrote this piece when Alex was only three years old. Here is an excerpt:
. . . Two months after the surgery, Alexander's vocal cords began to work again. It was so odd when I began to hear his first cries. They sounded like a kitten meowing. So tiny, so inhuman. I had anticipated his needs for so long that he hardly had reason to cry, and I was glad. That cry brought back to light all that Alexander had been through and fed my own insecurities and fears about his life. I wanted everything to go back to normal, but that would not happen for quite a while.
My bachelor's degree is in Speech Pathology even though I knew I would someday teach the deaf. Five years after I quit teaching at Texas School for the Deaf in order to stay home and raise my children, I was to see an even greater purpose for all of my training. I never wavered in believing that God had a special plan for me. I prayed for guidance on more than one occasion and did things that I felt led to do by a force greater than myself. It was now many years later that I would come to see the real benefit of my training.
"Honey, we need to talk," I began as I sat down with my husband at our kitchen table one night after the children were in bed. I poured out my worries and concerns about Alexander's speech development. Clearly he understood all we said to him, but he could not make himself understood, and the temper tantrums were occurring more frequently. "He's frustrated because he can't make himself understood," I said to Frank. Frank nodded and told me that he had had the same concerns but trusted me to do what was right. "We're at a crossroads," I said gently. "It's time to make a decision. We're going to have to have him tested by a speech pathologist . . ."
"NO!" Frank erupted. "I'm not going to have him tested," he said as he got up and paced in the kitchen.
My heart ached as I saw my husband so wrought with grief. "Well, I would like to give him three more months before we test him," I continued evenly. "If it's okay with you, I want to try something a little radical. I think it might work. It worked with some of my students in the past."
Frank stopped moving and sat down again. He took my hand and looked into my eyes. "I trust you," he said again. "What do you want to do?"
To read the rest of the story, turn to pages 62-67 in "The Heart of a Mother."
Update:
Alexander is now 15 years old and is a dual-credit student at Texas State Technical College (and homeschool high school). He is currently studying for an associate's degree in robotics. Although we spent a long time helping Alexander to recover his voice, it was time well spent.
As an elementary school student, he performed on stage with his brother (and friends) at the Temple Civic Theater. He also read to preschoolers at the Temple Public Library during Story Time. As a middle school student, he was a Director at Recordings for the Blind and Dyslexic.
Alexander also had his own robotics club for six years. During those years, his teams competed in regional, state and international competitions. These competitions usually required oral presentations, which Alexander not only performed, but usually wrote or co-wrote with his teammates. As a 9th grader, Alexander participated in a Youth Leadership Program sponsored by a local Toastmasters club.
Alexander prefers writing to public speaking, but he is quite capable of expressing himself and making himself understood. I feel fortunate that I had the training needed to help him recover his voice. I cannot emphasize enough the importance of early speech training for our heart children who experience speech difficulties after surgery. Open-heart surgeries save our children's lives, but it is up to us to ensure that they are able to lead quality lives. Essays like the one I wrote in "The Heart of a Mother" help to explain what you can do to help your heart child if he or she is experiencing difficulty with speech or language development.
First of all, I have some exciting news: our May Special is "The Heart of a Mother" for half price! That means that instead of the regular price of $25.00, for the month of May, this one-of-a-kind book will be available for only $12.50!
I am also going to use the month of May to catch up with former contributors to "The Heart of a Mother." I will be letting you read excerpts from their essays and an update on how those children are doing today. I will start with one of my own essays.
My essay, Developmental Delays - Speech and Language, detailed Alex's journey after his second open-heart surgery left him with paralyzed vocal cords and a partially paralyzed diaphragm. I wrote this piece when Alex was only three years old. Here is an excerpt:
. . . Two months after the surgery, Alexander's vocal cords began to work again. It was so odd when I began to hear his first cries. They sounded like a kitten meowing. So tiny, so inhuman. I had anticipated his needs for so long that he hardly had reason to cry, and I was glad. That cry brought back to light all that Alexander had been through and fed my own insecurities and fears about his life. I wanted everything to go back to normal, but that would not happen for quite a while.
My bachelor's degree is in Speech Pathology even though I knew I would someday teach the deaf. Five years after I quit teaching at Texas School for the Deaf in order to stay home and raise my children, I was to see an even greater purpose for all of my training. I never wavered in believing that God had a special plan for me. I prayed for guidance on more than one occasion and did things that I felt led to do by a force greater than myself. It was now many years later that I would come to see the real benefit of my training.
"Honey, we need to talk," I began as I sat down with my husband at our kitchen table one night after the children were in bed. I poured out my worries and concerns about Alexander's speech development. Clearly he understood all we said to him, but he could not make himself understood, and the temper tantrums were occurring more frequently. "He's frustrated because he can't make himself understood," I said to Frank. Frank nodded and told me that he had had the same concerns but trusted me to do what was right. "We're at a crossroads," I said gently. "It's time to make a decision. We're going to have to have him tested by a speech pathologist . . ."
"NO!" Frank erupted. "I'm not going to have him tested," he said as he got up and paced in the kitchen.
My heart ached as I saw my husband so wrought with grief. "Well, I would like to give him three more months before we test him," I continued evenly. "If it's okay with you, I want to try something a little radical. I think it might work. It worked with some of my students in the past."
Frank stopped moving and sat down again. He took my hand and looked into my eyes. "I trust you," he said again. "What do you want to do?"
To read the rest of the story, turn to pages 62-67 in "The Heart of a Mother."
Update:
Alexander is now 15 years old and is a dual-credit student at Texas State Technical College (and homeschool high school). He is currently studying for an associate's degree in robotics. Although we spent a long time helping Alexander to recover his voice, it was time well spent.
As an elementary school student, he performed on stage with his brother (and friends) at the Temple Civic Theater. He also read to preschoolers at the Temple Public Library during Story Time. As a middle school student, he was a Director at Recordings for the Blind and Dyslexic.
Alexander also had his own robotics club for six years. During those years, his teams competed in regional, state and international competitions. These competitions usually required oral presentations, which Alexander not only performed, but usually wrote or co-wrote with his teammates. As a 9th grader, Alexander participated in a Youth Leadership Program sponsored by a local Toastmasters club.
Alexander prefers writing to public speaking, but he is quite capable of expressing himself and making himself understood. I feel fortunate that I had the training needed to help him recover his voice. I cannot emphasize enough the importance of early speech training for our heart children who experience speech difficulties after surgery. Open-heart surgeries save our children's lives, but it is up to us to ensure that they are able to lead quality lives. Essays like the one I wrote in "The Heart of a Mother" help to explain what you can do to help your heart child if he or she is experiencing difficulty with speech or language development.
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