Every day, I look at our Everett and think of him as just another ordinary little boy. Because he is. He loves cars and trucks and everything that “Vrooms.” He shows no fear, and often leaps from furniture, always with a “legitimate” excuse. Mud is his best friend. He lives for the outdoors. And, not a day passes that a super hero of some form or fashion doesn’t fly through the house, looking suspiciously like our E.

Then, there are days when it ambushes me. Austin had his first soccer practice tonight. He was ecstatic. And, Everett was just as excited as Austin. He marveled at the brightly colored ball and relished in his turn kicking it through the house. When Philip left with Austin for practice, Everett approached me. He wrapped his arms around me, threw his head back and looked up with those beautiful brown eyes. “When do I get to play on a soccer team?” he asked, grinning from ear to ear.

My heart sank. I studied his sweet face. He still had the stubborn remnants of the tape from a sleep study two nights prior. Another reminder that things weren’t exactly normal, try as we might. The look of anticipation and hope on his innocent face took my breath. Never, I thought. Along with so many others. How many times will I hear this plea over the years? How much harder will it get?

So often, I utter the words, “I hate Coumadin.” It’s finicky. It’s unpredictable. It’s frustrating. It steals away parts of my son’s childhood. It scares his momma with its highs and lows, and what if’s. It means weekly, sometimes more, finger pricks and an occasional lab. It means anxiety over simple procedures. It’s scrutiny over the bruises. Scrutiny over the blood. And, when it feels like too much, I stop and try to catch my breath.

I breathe and remember. Remember what else it is. The most important thing it is. It’s life-changing. Life-saving. It enables him to have that mechanical mitral valve, clicking away so consistently, so peacefully in his perfect little heart. It enables him to have life, a good life, even when it might not be as I had ever envisioned.

As he stares up at me, awaiting my reply, I smile gently down at him. I assure him we will find something amazing for him to do instead. That we will find something special just for him. And, tonight, that was enough. He squeezed me tight and scampered off jabbering about monsters and Jedis. Day by day. One day at a time.