Friday, March 22, 2013

United We Stand

Talking about working together with one another in the congenital heart defect (CHD) community is one thing; actually experiencing working together is both uplifting and inspiring.

It all started with me a week ago when my son, Alex, came home from college for Spring Break. He is my connection to the heart world. It is because of Alex that I became aware that CHDs are the Number One birth defect. It is because of Alex that I learned about the fragility of life. It is because of Alex that I learned to treasure each and every day and each and every person who makes my heart sing.

On Saturday, bright and early in the morning, Frank (my husband), Joey (my older son), Alex and I met our dear friends, Laura and Ryan Redfern at the Mueller Lake Park in Austin, Texas near Dell Children's Hospital. We took part in the Children's Heart Foundation (CHF) Central Texas Heart Walk. There were several delightful things about this walk -- 1) my nuclear family and my adopted family (Laura and Ryan) were taking part in something special on a beautiful (albeit windy and cold!) spring day in Texas; 2) I finally got a chance to meet Bill Foley in person -- he is the Executive Director of the CHF and we've spent a good deal of time talking on the phone together about the CHD community and how we wanted to change things for the better; 3) I had a chance to see and give a hug to Katie Cataldo -- which may not seem that remarkable since she and I had spent Friday together working on Baby Hearts Press (Katie is BHP's newest intern and she is teaching me about social media) but I never take a hug from her for granted; 4) I had a chance to see Sarah Berg and some of the other Children's Heart Foundation - Texas Chapter volunteers which is always a delight and 5) I reveled in the fact that we weren't just walking for the CHF but we were also walking for the Adult Congenital Heart Association (ACHA). Finally I was not only seeing some CHD organizations working together, I was part of it!

This is a photo of Alex, Frank, Joey and me at the heart walk. 
(Photo taken by Laura Redfern -- thanks, Laura!)

Here we are in a place where the wind wasn't blowing so fiercely. 
We're standing next to a Scrabble cow that adorns one of the buildings near the lake. 
Since all of us love Scrabble, we thought this would be a fun photo to take.

Here are Laura and Ryan with the same cow.

I've been writing about how the CHD community needs to unite. On Saturday the CHF and the ACHA united. The results were remarkable. While the final totals are not in, we know that united we raised at least twice as much money as our goal! Just yesterday a dear friend from Texas State Technical College asked if it was too late to contribute to the walk. I then received an email stating that Betty had made a donation to Team Alex. I can't wait to hear what the final total for the walk is!

Sunday Joey and I boarded a plane for Washington, D.C. We went there to be part of the ACHA Advocacy Day. But once again, it wasn't an event only sponsored by the ACHA -- instead the ACHA had united with Mended Little Hearts to make this event a reality.  This was the first time for Joey and me to be part of the legislative process up close and personal. I had written many letters and taken part in Congenital Heart Defect Awareness Day in a number of states over the years, but I had never spoken in person to people who had a chance to change laws for the betterment of the CHD community. The ACHA welcomed all of us to D.C. and taught us how we could unite -- all 120 of us! Yes! One hundred twenty members of the CHD community from 27 different states all came together for this historic event! They set up appointments for us to meet with our lawmakers and then we rejoiced together at a dinner after all was said and done.

But before we descended upon the Hill, we had a lovely Welcome Reception sponsored by the American College of Cardiology at the Heart House. Luckily for us the Heart House was very close to the Park Hyatt Washington Hotel since it was raining and cold.

Here I am with a clean-shaven Joey in the Heart House.

This is an impressive stethoscope display at the Heart House.
This is a "song" by Oliver Wendell Holmes called "The Stethoscope Song" 
also on display at the Heart House.

The reception was lovely and was followed by a wonderful pasta dinner at the hotel. The next day was when we started our training. Since we only had three people from Texas at the event, we shared a table with the lovely people from Tennessee. I think one of my favorite parts of the 2-day event was meeting people I've "met" over Facebook in person! But better than that, about 15 years ago, shortly after I published my first book, Hypoplastic Left Heart Syndrome: A Handbook for Parents, I received a phone call from a mother in New Jersey. That mother had a daughter born with HLHS, just like my Alex. We spent time talking and bonding on the telephone. On Monday I had actually met that mom and her daughter, Tara in person! It was like a reunion. Here is a photo of us.

Anna, Joey, Tara and Barbara McFadden

Of course our whole purpose for being in Washington, D.C. was to meet lawmakers and our day started with a bang! We went to a Texas Tuesday Coffee and met Senator Ted Cruz!

This is a photo of Manuel, Ted Cruz, Anna and Joey at the Texas Tuesday Coffee

While waiting for our photo with Senator Ted Cruz, I had a chance to chat with Texas State Director for Senator Ted Cruz, John Drogin. He asked for my card and then started talking to me about CHDs. To my amazement he had two family members affected by CHDs. I'm looking forward to talking to him in the future!

That was just the beginning! We also had a chance to meet with John Cornyn's Legislative Correspondent, Wes Hambrick. He was a very sharp young man who politely listened to Mary Adair (heart mom to Daniel, tetralogy of Fallot) and me while we told him that we hoped John Cornyn would join the Heart Caucus that is just being established. We also hoped that he would increase the funding we're asking for heart research from $2 million to $3 million and finally, we hoped that he would be supportive of the surveillance that has begun in the United States because the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) can help prevent premature death and disability in the rapidly-growing and severely under-served CHD population but before they can do so, they need to know where that population is! Wes conscientiously took notes and then kindly let us take a photo with him.
Anna Jaworski, Wes Hambrick and Mary Adair 
(notice the photo of the longhorns behind us)

Joey and Wes Hambrick

Our next meeting was with Congressman John Carter's Legislative Assistant, Taylor Gilliam. Since we arrived a little early, she kindly listened to our pleas for help and then respectfully listened to Joey, Mary and me as we told our stories about living with CHDs. To our delight Ms. Gilliam told us that she was well aware of some of the legislation being discussed right now because their "neighbor" used to be Gus Bilirakis, who is a Legislative Heart Champion. We felt a great deal of support from Congressman John Carter's staff and we left feeling elated.

By this point in the day my phone was practically dead so Joey took the photo of us with Taylor Gilliam. I will have to upload that after he sends it to me.

All in all it was a wonderful event. I learned so much from the people who trained us, the legislators we interacted with and the other members of the CHD community. When we parted ways many of us promised to return next year. Joey was touched in a special way by this experience and his reports about what we did to his brother made Alex say that he wants to take part next year, too. If we can manage to juggle our schedules and finances accordingly, we hope to bring Frank and Katie with us. If Mary and Manuel show up again next year, too, we'll double our Texas representation!

United we stand. It's more than a motto. It's a philosophy and it's a winning way to achieve beyond our expectations. If you also attended the Central Texas Heart Walk or the ACHA/Mended Little Hearts Advocacy Day on the Hill, please feel free to leave a comment and share your experience!

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