Most of us look at CHD awareness week as just a time to do just that: build awareness, inform the public that CHD's are the #1 birth defect, so people are better informed and so we can secure the funding we need to keep our kids alive because a lot of people don't know about us or our stories.
On the one hand, it's most definitely a time to celebrate, to be thankful, and to be grateful for the medical interventions that are now possible for our children. And that makes us all feel a certain gratitude and thankfulness that's impossible to explain. The feeling of joy is indescribable when you are among the lucky ones -- lucky enough to still have your heart child. We are the definition of the word "hope."
And on the other hand, Heart Month becomes a time (whether you like it or not) to reflect and to remember just how hard this road has been. Sometimes we get angry. Sometimes we cry about the hardships our children, our marriages, and our families have had to face because of this diagnosis. We mourn the loss of normalcy in our lives. We mourn the many little CHD angles that didn't make it. And most of all, we connect with one another and turn to each other for the much needed support that is required in order to continue on this journey of raising a child with half a heart -- hopefully into adulthood.
In an effort to continue to raise awareness and to honor the struggle, the sacrifice and the love that makes up our reality as heart families, here are some videos from the heart:
The Heart of the Matter -- how they are helping save our children
Clara's Story -- what it's like to find out and then forge ahead
Clara's Heart from Joe Portnoy on Vimeo.
Will's Story -- what it's like to live at Boston Children's Hospital with our newborns
Haven's Story -- what it's been like for us
Untitled from Molly Foley on Vimeo.
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