It strikes me that Mitch and I look the same to most people since we lost Miles. At first it was just the two of us wishing it were the three of us and now it's the three of us wishing it were the four of us; the plus one part of us is invisible somehow though it’s always there for us. It will always be plus one. Miles is gone, but he’s not. He enhances everything still—everything is stronger—love, joy, pain, worry. Every day is less than it would have been if he were here. Yet the world is better because we once had him here shining in it. Every day, every thing, is always plus one.
Miles was born on January 28. 2010. He was perfect. He had blue eyes, dark hair, a perfect face, and an adorable chin. His fingers and toes were tiny yet somehow adorably large compared to his body. And he had a major heart defect. Within minutes of labor and delivery, Miles was diagnosed with Total Anamolous Pulmonary Venous Return and a double-outlet right ventricle. Miles conquered his first open-heart surgery within hours of being born.
Later we would learn that he had heterotaxy—involving the heart defect, a transverse liver, and no spleen. With time, we added pulmonary lymphangiectasia to his major health concerns.
Simply put, Miles had a perfect exterior with tragic plumbing.
All in all, Miles spent his four-and-a-half-month-long life living in the Pediatric Intensive Care Unit in Chapel Hill, North Carolina and then in Ann Arbor, Michigan. It was the most joyful, painful time of our lives to have Miles here with us, to just be waiting for the day when we could get him home and reminisce over how hard it had all been back during his rocky start. We would spend hours and days standing by Miles’ bed caressing his head the way he adored, staring at his precious face as he watched us, reading The Very Hungry Caterpillar, and playing lullabies by Bob Marley and Dave Matthews for him (all while handling the medical ups and downs day in and day out). And then, on the best days once he was off of the ventilator—the times that are so clear in my mind that I can see it and feel it—we spent hours rocking Miles on our forearms and shaking his booty to rock him.
We spent four and a half months in the PICU with Miles. And now, we are spending a lifetime missing him. On the day that I’m starting this blog—April 17, 2011—Miles has been in heaven for 10 months. It’s time to start writing because time does not heal all wounds. Yes, it’s different now than when we first lost him; but it’s not better. Sure the world keeps going, but in some ways it just doesn’t.
Our daughter Elliott was born on July 10, 2011 and, just as Miles had done, brought a bright light to our world. My days are filled with her, and my heart is filled with love for Mitch, Miles, and Elliott.
Here I write about my life; a life that is always plus one.
Our daughter Elliott was born on July 10, 2011 and, just as Miles had done, brought a bright light to our world. My days are filled with her, and my heart is filled with love for Mitch, Miles, and Elliott.
Here I write about my life; a life that is always plus one.
