When I think of the last two years as I sit here on the eve of another major surgery, I'm astounded by how my family has changed. I'm astounded by who we have become. Two years (and two days, because this post is a little late) ago, I was an enormously pregnant little girl, scared out of her wits. As uncomfortable as the last few weeks of pregnancy are for everyone, I was in no rush to deliver both the broken life of my baby and the death of my world as I knew it.
She came fast and furiously, anxious to break into the world and out of the cocoon of my womb that was quickly become a death sentence as her life supply had begun to shred, a fact that was totally unknown to the rest of us until the torn placenta was delivered. Avery attempted to be born looking up, with her forehead and eyes emerging first, her head at a life-threatening angle. Quick thinking and risky maneuvers marked the beginning of her life (my OB pushed her head back, turned her, broke my waters and immediately delivered her, saving her from a likely broken neck), and every moment since.
12 surgeries. 20+ sedations. 1 coma. 4 shunts. An unknown amount of radiation that makes me shudder to consider. 3 reconstructive skull surgeries (preparing for the 4th).
Two years of a feeding tube. Two years of a trach. One year of a ventilator. Two years of hospital admissions. Two years of terrible sleep for everyone involved.
Two years of learning to live one day at a time. Two years of news that broke my heart and two years of defying the odds. Two years of face-timing my babies back at home while I nursed a groggy, swollen Avery back to life.
Two years of asking for our favorite residents who were in their first year when we first met. Two years of becoming friends with specialist and nurses. Two years of meals being delivered to my family while I was away and when I came home - the kind of blessing that always leaves us eyes misty with grateful tears with the deliverer leaves. Two years of being cared for by my family as they supported and stepped in when our backs were up against the wall.
Two years of crushing. Two years of desperately searching for meaning. Two years of learning to loosen my grip. Two years of falling more in love with medicine than any other subject in the world. Two years of finding that Hope is the only thing to hold on to. Two years of finding that my feet were steadier than I believed and my shoulders strong enough to carry weight that I'd never before considered carrying. Two years of discovering that hating myself for my past wasn't going to change anything and that I didn't need to prove my "goodness" to anyone.
Two years of Avery. Two years of her shiny brown hair that grows at lightening speed. Two years of her patient, forgiving smiles. Two years of surviving, fighting, thriving. Two years of the cutest button nose and perfect fingers and toes. Two years of arm rolls and the most delicious cheeks.
Two years of waiting for the next shoe to drop. Two years of wondering how far into her future this syndrome will reach. Two years of praying the radiation never catches up with us.
Two years of absolute, unconditional love for the tiny human who changed my life. She is spunky and loving, demanding and opinionated. She loves to be held, but never sits still. She speaks and signs. She loves babies more than anything, especially her cousin Daphne (who she requests to see videos of every second of the day - literally!). Her favorite movie is "Moana" and she ignores anything else. "Wana, Wana!" she yells every morning.
Avery Jane wins the heart of everyone she meets. She is brave and intelligent (shockingly so, sometimes). She's the kind of different that makes you look twice and the kind of sweet that makes you melt into a puddle.
She doesn't know yet that she's unique, but I hope she learns to love it when she realizes how rare she is. I hope she knows that different isn't scary and the features of your frame are nothing compared to the contents of your heart. I hope she knows that I am grateful for each of these years that we spend together, as many as we are allowed. I hope she knows that I'm a better mother and a more empathetic human because we met.
Two years of Avery. Here's to many, many more!