Monday, February 21, 2011

In Memory of Bethany

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.

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!

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, 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 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.


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.