Remembering Travis

A year ago today, we lost one of the brighest eyes and strongest men this planet knew.  This man was a mere 16-months old but had endured more pain and suffering and joy than any man I know. 

Meet Travis Gary DiCarlo.

Travis passed away following open heart surgery.  Even though Trav's mom is one of my dearest friends, I was stunned to read a line from her blog this morning:

"I gave up my last chance to hold my baby so that his organs could help someone else."

As a heart parent, we tout how significant organ donation is.  As a human being, we should all read Travis' mom's words over and over and over again.  She GAVE UP her last chance to hold her son so that the placement of his life support (ECMO) would remain in tact and his organs not be compromised for someone else's child.  I cannot even comprehend the magnitude of that statement. When it comes to children with congenital heart defects passing, which unfortunately I am no stranger to, my mind simply freezes.  It's paralyzed.  It's a defense mechanism for me.  So much so, that I cannot even continue with this train of thought...

For Travis' 'angelversary', all of us at Sisters by Heart created an event to celebrate Travis' life and the impact he had on our world.  We engaged the heart community and family and friends to help us send red balloons with rememberance tags into the sky across the country.

A few of the Rememberance Tags with one of the sweetest faces I've ever seen....

And our emotional balloon release for Travis...

(Travis' spirit surrounding Zoe during our photo shoot)

(Zoe releasing her balloon)

To visit or participate in the event "Balloons for Travis" and see photos from across the country, visit http://tinyurl.com/balloonsfortravis.
Take a moment and cherish your loved one's today.  Hug them and let them know you love them.  Life is too short... all we have is the present moment.

Arizona is stepping up...

Even though my political views may differ vastly from many politicians in Arizona, I have to say that Governor Brewer stepped up and supported something I hold with the utmost importance.

Several weeks ago, I wrote the Governor asking her to acknowledge the prevalence and impact that Congenital Heart Defects have on Arizona families.  Much to my delight, I received a proclamation in the mail a few days ago.

This week, starting tomorrow (February 7th through February 14th) has been proclaimed Congenital Heart Defect Awareness Week.
 

The text of the proclamation is simple, yet significant:

"WHEREAS, congenital heart defects are the most frequently occurring birth defects and the leading cause of birth defect related deaths worldwide; and

WHEREAS, over a million families across America are facing the challenges and hardships of raising children with congenital heart defects; and

WHEREAS, every year 40,000 babies are born in the United States with congenital heart defects; and

WHEREAS, some congenital heart defects are not diagnosed until months or years after birth, causing many cases of sudden cardiac death in young athletes who have not been diagnosed with congenital heart conditions; and

WHEREAS, in 2010, there were 2,783 hospital admissions in Arizona of infants with congenital heart disorders; and their hospital charges amounted to $449 million; and

WHEREAS, despite these statistics, newborns and young athletes are not routinely screened for congenital heart defects, with a disproportionately small amount of funding available for congenital heart defect research, parent/patient educational services and support; and

WHEREAS, Congenital Heart Defect Awareness Week provides an opportunity for families whose lives have been affected by congenital heart defects to celebrate life and to remember loved ones lost, to honor dedicated health professionals, and to meet others and know they are not alone; and

WHEREAS, the establishment of Congenital Heart Defect Awareness Week will also provide the opportunity to share experience and information with the public and the media, in order to raise public awareness about congenital heart defects.

NOW, THEREFORE, I, Janice K. Brewer, Governor of the State of Arizona, do hereby proclaim February 7-14, 2012

* CONGENITAL HEART DEFECT AWARENESS WEEK*

and encourage all citizens to increase awareness, education and services for congenital heart defects, which each year affect thousands of babies in Arizona."

And, for my Congenital Heart Defect "baby", who gives me new purpose and meaning...

I love you Zoe Madison and will fight the most stubborn of politicians so your voice can be heard!!!

Zoe, at the beginning of her battle with Hypoplastic Left Heart Syndrome

Zoe, today, half a heart and living well!

Sunsets

This past week we've seen some beautiful sunsets.  Zoe loves when I spot one out the back window, she knows she's gonna get to go "outsiieeeeddee!"

She certainly doesn't hide her excitement!

And a few more, just because she's so darned cute - and the sunsets rock!

I cannot stand her cuteness!