It was a sleepless night in the pediatric intensive care unit of the hospital, but your daddy and I didn’t realize it would be your last. We knew that you had taken a turn for the worse, but didn’t understand how close we were to the end. We assumed that we would have more time with you.
June 4, 2009, was the day we learned not to make assumptions. You closed your eyes in the late afternoon, never to wake up again. We held you as you took your last breath, and we knew then that life would never be the same. But we had no idea how much it would change, fundamentally and irrevocably.
It’s almost like we have lived two distinct lives: the period before you were diagnosed with SMA and the period after we lost you. Sometimes it’s hard to reconcile the regimented life we had with you to the cacophony of chaos that is life today.
I try to bridge the gap by talking about you with your little sister and brother. I tell them that you are a part of them and that they can feel you in their hearts. I want them to know you from the inside. I want them to look at your pictures and recognize your place in their lives as their older brother. And, more selfishly, I want them to understand why I cry when certain songs come on the radio or when the calendar turns another page. Why I helicopter after them on the playground or check to make sure they are breathing every night. Why we go to the cemetery on holidays and on anniversaries like today.
You see, we don’t have the luxury of making assumptions anymore about what tomorrow will bring. Grief is part of our every day, a balancing of the bitterness of your absence with the sweet of your little sister and brother’s budding lives. In fact, yesterday was your sister’s dance recital, and it was a long, glorious day. But, all day I worried that I was diminishing your memory while basking in her brightness.
I’m not always great at the balancing act. Lately, I’ve been working a lot, fueled by the desire to do more for our family but missing time actually spent with them. I am easily frustrated and quick to anger. I feel stress and anxiety more deeply. I worry too much, and I find myself breaking down in tears too often. I push myself forward, knowing that life doesn’t come with promises and the unthinkable can happen at any time. It’s hard to trust the future when the past has brought such great pain. I owe it to you to try harder.
So, today, we are slowing down the pace. Your little sister and brother just came into my bedroom, where I am writing this, to jump on the bed. Will brought me a toy. It’s a little stuffed animal that he calls “Baby Duck” and that he stole from his sister’s room. We bought it years ago, because the duck was holding a small dragonfly. Will points to the dragonfly now and says, “Look, Mommy! It Andy Dragonfly!”
As my tears start to fall, Lucy puts her arms around me in comfort, saying, “Mommy, don’t be sad. Andy’s with us. He’s in our hearts. You told us that.”
Her words are balm to my broken heart, bringing me hope. I have to believe that the little wonders in our life together are worth the struggle. That we’ll be able to continue to smile through the pain and to laugh through the tears. That, in some form or another, you are with us through it all.
Andy, you are remembered every day. You are loved beyond measure. You are missed ferociously. Today, tomorrow, and until the day comes when I can hold you again.
I love you always and forever,