Today is the one year anniversary of Ramona’s diagnosis. It was a snowy day like today. I had just nursed Ramona and was playing with Simon. Andy was in the shower. When the cardiologist called around 7:00am I barely registered what she was saying. The only phrase that sticks in my head is “quite abnormal”. That phone call started a chain of events that has changed us all forever.

I’ve been on the verge of tears for weeks. Happy tears, sad tears, tears of anger. I’m calling them survivor tears. Like in the movies when the hostage collapses into the arms of her family. I was always like, “Get a grip, you’re safe now, geez.” But now I get it. They’re the tears you can’t cry when you’re in the midst of a crisis because you’re too focused on getting through it. So I’ve been shedding some survivor tears over the feeding tube, over the some of the hurdles we’ve crossed. Some tears of relief.

Ramona’s still got some mountains to climb. But having seen her be so strong and endure so much gives me hope. And her little heart is so pure. When Ramona gets a shot, she cries. When she hurts, she cries. She doesn’t hold on to her pain and wait for it to pass to cry. And when the pain is past, so are the tears. I wonder as she gets older if she too will try and “keep it together” until the danger is over.

Tomorrow is Congenital Heart Disease Awareness Day. I know Valentine’s Day last year definitely enhanced my awareness as it was the date of Ramona’s first surgery. I’ll never look at a candy heart the same again. The families we’ve met and stories we’ve heard this past year, both in real life and online, have opened our eyes to the world of special needs families. It’s been a blessing in so many ways.

My prayer for Ramona as she enters her second year of treatment is for God to protect her sweet spirit from discouragement and darkness. That she would continue to grow, thrive and surprise. That spring and summer will bring opportunities to get out there and experience all the things life has to offer these little ones of ours. That God will protect us all from this storm of the unknown.

Thank you so much for all of your support and care this past year. Your help, meals, phone calls and prayers, of course, have meant the world to me. Here’s a pic of our dear about a month before her diagnosis. Although I often think of her life as before and after this fateful day last year, she’s still the same girl. We love her.

Love, Jane.