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.
I cannot pretend to understand your pain, I only know my own and I, too, will be forever changed from having our recious grandson ripped from us. We loved him with all our hearts and he did indeed take part of us with him to Heaven. The hole in our hearts will be with us until we meet him again.
I love you, Andy Man! Your loving GiGi
Oh, Audra…you’ve done it again: you’ve put into words what my heart feels and my mind thinks. And it’s so true. You NEVER get over it. You get through it, sure. Sometimes gracefully; other times not.
And those dreadful reminders of what could have been or should have been…they’re everywhere and they still have the ability to take my breath away. I hate them but I also cherish them. They are the reminders of the wonderful months I *did* have with Oliver, not just of the years I won’t have with him.
Hugs to you, Audra! Thank you for your eloquent words.
I feel that same as you.Its a constant battle for me.One week I will be ok and able to think of her and what we had then other weeks I cry myself to sleep thinking of how she was cheated of life from the day she was diagnosed.I miss her dearly but the pain is there and the littlest things can bring them to the surface.A huge peice of my heart died the day Kayden did and it is true you are not the same person we were before. Its hard to cope and find a new norm when youve lost something so special and you know you wont have that back until your time in heaven comes.If youd like to talk anytime Im here as I really have no one close to me that can relate to my pain.Thanks for posting it.
I love you!
Dear Audra, you are capable of putting into words what most people can not. If your loss and the devastation of this disease hurts a person who had never lost a child and has never personally met anyone affected by this disease, I can not even dare to imagine and understand your pain. It is so true, and something that is hard to let others understand, that grief is a lifelong process in a parents’ heart.
This is such a powerful post. Thank you for writing it. We lost our daughter Georgia to SMA in April of 2009. I too remember how many of my friends wanted me to start acting ‘normal’ because they were so afraid of who I had become. Personally, I think that I am a more compassionate and a stronger human being who doesn’t take the little things for granted. I am a better person because of Georgia and I am grateful for her each and every day. All this to say that it doesn’t take away the pain of losing her and the grief that I struggle with every day. I will never be the person that I once was nor would I ever choose to be.
((((HUGS)))) I will be thinking about you in the next couple of weeks.
Thanks for the words Audra. We spent Mother’s Day unable to talk about the elephant in the room but we all knew that the hole in our hearts would always be there. When we are blessed again, and we know we will be, there will always be a special part of our hearts for the one that never was. Love never dies.
To your point about your new normal and never “getting over” it–so true. I try to keep faith that a cure will be soon found, but I don’t look forward to the journey I’m afraid my family will have to take someday, the same journey that yours has endured.
What a great writer you are. I’m so sorry for Andy’s passing, and for any of our SMA kids who pass–but you sure have a gift for expressing your feelings in writing. Well said.
Sigh…..how to describe any better than you just did? I can’t. Thank you, as always, for putting the perfect words on our situation. I just had a moment like that- a “should have.” I have a pic of Chloe on my nightstand…we were at Disney during Christmas 2007. When we could take her somewhere without problems. I remember that beautiful moment being painful because of SMA. All the other families there had their amazing babies with them. And none of them were going to die. I never enjoyed anything completely because of that damn disease and wondering when…when…is she going to die. I am forever scarred.
I’m sorry you are, too. This plain sucks.
I’m so sorry for your loss Audra. I can not relate to you in regards to losing your son, but I do very much relate to the part where you wrote about the bridge, and crossing over. I often feel that way in just becoming a family who has SMA kiddos. People try to understand, but unless you’re the parent of that child they never fully get the whole picture. Thank you for that image, it’s what I’ve been thinking and just never heard it like that.
You’re incredible Audra, thanks for putting into words what most of us can not. I stand beside you on the “other side” of that blown up bridge. And yes Corinne, it sucks!
Audra – Thank you for this powerful statment. I recently joined your side of the bridge when our daughter Ciara passed away from SMA type 1 in April 2011. What you said is exactly how I feel. Ciara is in my heart and unfortuantely that is the way things are going to be.
Thank you for sharing the same thoughts that go through my mind on a daily basis. I don’t think you can ever really get over the loss of a child. Your life will just never be the same. My daughter Aubrey also had SMA type 1 and passed away from a short battle with pneumonia on April 24, 2011. That was also Easter Sunday. She was my first and only child and I still struggle everyday to understand why this is happening to me. I know I will really never have an answer. My prayers are with you and your family.
Thank you… I felt as if I was not normal for feeling the way that I have… I am stuggling at my worst right now… not knowing why my son Kasey was taken from us… it has been 2 months since my precious little angel went to Heaven… it seems like the days are getting harder and not ever going to get better. Kasey died with heart complications. I am at the stage of guilt and blame right now… So thank you! I appreciate your words… God Bless!
You said it all. Isn’t it a wonder that we are still alive? Reading your words brings back to life so many feelings and memories. Sometimes I still marvel at our ability to survive the death of our babies and wish that others realized how truly difficult that is. It’s been over 3 years for me now and I do want to say for you mommies who are in the depths of the agony, please know that it will change. It will not always be hard to breath, hard to live and hard to wake up every day. Just please remember that. It never goes away; but it will change.
THANK YOU! Thank you soooooooo much for telling the world the words I could never say but ALWAYS felt since I lost my two babies to SMA also. Prayers girl. <3