Mia Marrone Heart Foundation Pendant

Saturday, February 2, 2019

What is CHD? Our Reality

It's Heart month, so what is CHD?
I could give you statistics (I'm sure I will later), but for now, I will tell you this...

CHD is awful. It can rip children away from their families in an instant. Your child can be completely fine running around and playing and then, all of a sudden, they're not. They are left fighting for their life and your are wondering, how and why this is happening.

Yes, we always know this is a possibility, that CHD can unexpectedly cause the heart to fail, that it can cause a stroke or cardiac arrest, but that doesn't make it easier to accept if (or when) that does happen.

It's never far from our mind. Yes, we live life to the fullest. We take many vacations to Disneyland because that is her most favorite place in the world. They treat her so well there! She does ballet, hip hop, choir, excels in school and volunteers at the animal shelter. But we know not to get too comfortable. We know that life can change in an instant, that one respiratory virus could attack her heart, one cardiology appointment can deliver devastating news, and one phone call can change everything.

Your child can fight so hard through surgery and beat all the odds, and yet, CHD can take them when they are doing so well.

We grieve together as a community because we have come to know and love other heart families, we share their struggles, and we know that at any moment it could just as easily be one of us.

We try to live life like there will be a tomorrow, but in the back of our mind, we often wonder. So, we may give in to them too often at bedtime, because 'what if they go to sleep feeling sad and they don't wake up in the morning?'

We check on them throughout the night, listening for breathing as we place our hand over their heart to feel it beating.

We want a life full of love and wonderful experiences amid all the tough times. We make the best out of each hospital stay, we hide our tears and sometimes blame our watery eyes on allergies, and we form incredible bonds with their doctors and nurses.

We want a long life for our children. CHD Awareness is so important because their hearts matter too. There is no "better place" for a child to be than in the arms of a loving parent.

Please help us raise awareness. Our children's lives depend on it.

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