I signed into the Cardiac ICU as a visitor to a little boy and his mother. I didn’t even know his last name. When I stepped onto the tiled floor I was pelted with a battery of painful memories. Four years had passed since I had set foot here as a desperate mom, hungry for hope.
In his hospital room I saw a ring of people, like a circle of love, and at it’s epicenter a light. I stepped to the light only to find a boy. A perfect boy with a broken heart. This was my first introduction to Reign, a boy so aptly named. He reminded me of the only wise King.
As Reign’s family members spoke, they spoke of their gratitude to have met such an angel. I think they all knew then that he needed to go home.
One thing Jack taught me was to expect a miracle. And another thing that baby Gabriel and now Reign have been taught me is that sometimes the miracle was in the living. The short life that these children lived made the people who loved them ache with the pain of life and look to heaven for answers. That was their miracle. They opened our eyes to a fleeting glimpse of the place between here and there. The place of desperate longing and hope and despair all wrapped into one. A place of waiting and faith.
Reign wasn’t always an angel of light in a dim hospital room. Once he was running around and playing. Once he seemed so normal. But, like nearly all heart babies, his mother knew something was off. Amanda knew that Reign’s “pneumonia” had to be something else. She persisted until she finally received answers. The answers no one wants to hear. Reign was born with Pulmonary Vein Stenosis, A rare and deadly heart disease. That is when Amanda quit her job, bought a ticket for Boston and flew her little boy to the one of the only hospitals in the nation who have some kind of handle on PVS. Boston Children’s Hospital.
That is when Amanda joined a club no one wants to be a part of, she became a heart mom. Her new life became one of tough choices and painful news. Her new job became to pour herself out until she had nothing left and then do it again. That is what she did so beautifully.
But try as she did, no one can add a day to the book of our life. God wrote Reign’s story so fully beautiful and so condensed with meaning that he didn’t take long to live it out.
Thank you sweet Reign for teaching those who love you to pray.
Thank you Amanda for teaching us how to love selflessly.
Thank you God for giving us your miracle called Reign.
We need a cure for PVS. Please share. Spread awareness. End this thing.