On May 17, 2011, Oprah Winfrey featured author James Frey on her show. During the interview – which mostly dealt with reconciling the controversy over his book “A Million Little Pieces” – Oprah mentioned that his family suffered a loss in 2008. With tears threatening, he began to talk about his son Leo, who passed away due to spinal muscular atrophy just eleven days after his birth. After gently leading Frey through more questions, Oprah asked if he was at a place where he had “found closure” since his son’s death. He looked at her with haunted eyes and said that losing a child is something you just don’t get over.
This exchange has been repeating in my mind over the past several days, dredging up my own memories of similar conversations. Like Frey, I too have lost a child to SMA. Almost two years ago, on June 4, 2009, my infant son Andy died from aspiration pneumonia as a result of this horrific disease. On that day, I learned the lesson that the Frey family already knew – there is no pain greater or more devastating than the loss of a child.
I have lived with all kinds of pain in my less-than-perfect 37 years. I have endured break-ups, breakdowns, and broken bones. I have hurt others with sharp, emotion-fueled words and have been hurt in return. I have failed people whom I love, and I have been betrayed by people whom I thought loved me. I have lost family and friends to distance and death. I have cried many tears for many different reasons. Some of this pain has been erased by the passage of time. Some was resolved with a long talk or a tight hug. And, some will remain with me for the rest of my life. But, there is no comparison between any of these past hurts and Andy’s death.
Because on the day he died, a piece of me died too. A piece that can never be recovered.
In the immediate days and weeks that followed Andy’s passing, I was consumed by anguish. The act of being a mother – from the months of pregnancy to the around-the-clock care of a newborn – creates a very real physical bond. And, when that child is no longer there, the loss is visceral. Everywhere I turned, there were memories of my son. Even my body reminded me of him – the stretch marks and scars of his birth were a constant reminder of the child I once carried. I cried constantly. I quit my job. I didn’t want to get out of bed. My life without Andy seemed pointless.
Several of my well-meaning friends asked me when I thought I’d “get over it” and get back to “normal.” Some advised me to go back to work, to exercise more, or to go on vacation in order to “take my mind off of it.” This advice infuriated and frustrated me, because they simply didn’t grasp the depth of my pain and the tangible nature of this loss – and never would. While I understood that my friends loved me and were trying to help me, I also was aware that this person that I had become, who really could not function in any meaningful way, scared them. That they no longer knew how to relate to me. That suddenly I was the embodiment of their darkest fears.
There is a large divide between those of us who have lost a child and those who haven’t. It’s almost like crossing a bridge, then looking back over your shoulder as the bridge explodes. You can see the people on the other side, but you know that there’s no way to get back to them. You can see their mouths move, but you can’t hear a sound. You are left alone, dodging shrapnel and dealing with the fall-out.
The simple truth is that the person that I was before I had and lost Andy no longer exists. The death of a child is a catastrophic event from which you can never fully recover. It changes you in a fundamental way. It alters your perspective on life. It affects how you interact with the outside world. Even now, almost two years later, I continue to be impacted by his death every day – in the “what could have beens” and “what should have beens” that linger in the recesses of my mind.
As the weeks became months and now years, I have realized that grieving is a lifelong process. In my journey so far, I have moved through several of the different stages of grief, and I have allowed myself to recognize and experience each of them. I have come to a place where I accept that, while I don’t like that my son had to leave this world so early, I understand that it is part of the greater plan. I know that Andy lives on in my heart. I have found my “new normal.” I have begun to heal.
But have I gotten over it? Never.