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This Is What It Means to Be a Heart Parent

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It took just seven words to change my entire life. 

Seven words that broke my heart, shattered my dreams and turned my world upside down. 

Seven words from which I emerged a stronger and more compassionate person.

“There’s something wrong with the baby’s heart.”

In that moment, I felt fear colder and stronger than any I’d ever known before. In that moment, I knew I would do anything I could to save my child’s life. In that moment, although I could barely grasp it, I became a heart parent.

I learned to hold on to hope and faith when there was nothing else left to do. I learned to live in the moment and find joy in the darkest of times. I learned to put my trust in the skilled hands of those who were caring for my child.

There were many moments when all I wanted to do was run and hide, to pretend this wasn’t happening. There were many moments when the fear of the future felt overwhelming. There were many moments when it seemed the only thing that kept me going was hope and the love, support and prayers of those around me.

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This is what it means to be a heart parent.

I’ve looked at the huge hands of a surgeon and marveled that they can perform such intricate surgery on something the size of a walnut.

I’ve sung my child to sleep in the anaesthetic room of an operating theater.

I’ve handed my child to a surgeon, knowing that they will stop my child’s heart and prayed I will see my child alive again.

I’ve spent hours pacing the corridors of a hospital while my child undergoes life-saving surgery. I’ve spent hours sitting in intensive care listening to the endless beep of machines. I’ve spent hours holding my child in my arms, thrilling at the joy of being able to do so.

I’ve learned that miracles can and do happen.

There are many moments where my feelings as a parent seem to be amplified: Anxiety whenever my child is unwell. Guilt on those challenging parenting days that come to us all – those moments when bedtime feels like it can’t come soon enough and I feel guilty for not enjoying the moments I know I’m so blessed to experience. Joy and pride in all the little milestones that suddenly become extra special because of the journey it has taken to achieve them.

The road has been rocky at times, and there might be many dark moments still ahead. I do not know what the future holds, and I do not dare to try and look ahead.

This is a road I would have never willingly chosen to walk, and yet I know I would walk it all over again for the joy and blessing of having my child with me.

I’ve discovered a faith that has helped me to endure throughout the dark moments. I’ve discovered a strength I never knew I possessed. I’ve discovered a love stronger than anything this journey can throw at us.

This is my life.

This is our journey as a family.

This is what it means to be a heart parent.

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Follow this journey at Little Hearts Big Love.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 16, 2015
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