spreading awareness

This is congenital heart disease. Looking at your four-week-old baby with such joy and relief after a 10 hour open heart surgery. Spending the whole day in the surgical waiting room on edge, waiting for the receptionist to call your name with an update every hour. Wondering when they don't call on the hour if something horribly wrong has happened. Saying goodbye to your baby that morning in the triage room surrounded by people in scrubs and masks, knowing very well it could be your last time. Looking at your son's open chest, and watching his heart beat. Thanking God for every beat of that heart. Wondering if he will remember this later in life. Wondering if he will get to experience life outside the hospital... Living for this moment alone. Locking eyes with your sweet baby boy, and thanking God for these minutes spent together.

Worrying about the future... and what life will be like for him with such a sick heart. Hoping for a cure and for healing. Wondering how many times you have left stroking his head and holding his hand. Wondering if you will ever be able to hold him again. Dreaming about hearing his voice and being woken up from his cry in the middle of the night. Fixating on monitors and waiting for blood gas results. Celebrating any ounce of pee in his catheter. Praying he doesn't have to go on ECMO. Praying he makes it through the night. Cherishing every single moment together. 

This is congenital heart disease. It is not pretty, but these babies and children are so strong. Their parents only strive to live up to their level of strength, fighting for them with all of their might. February is heart disease awareness month. Please spread Owen's story to others. Not many know that congenital heart disease is the most common birth defect. I certainly didn't know until Owen. It occurs in 1 out of every 100 births. Please spread Owen's story to raise awareness. Talking about it increases awareness which impacts research, increasing the chances for these children to live healthy, full lives.