Why do we value some lives more than others?
I'm going to rep all the SUDC moms and dads here tonight. All the parents who know the sudden loss of their child, no matter the age or the cause and all the spouses and families who have lost loved ones in sudden tragic ways. This is a soap box post. Don't say I didn't warn you.
Kobe Bryant and his daughter were killed in a helicopter crash this week. Within minutes every person in the known universe (or at least on the internet) was posting sad memorials to his loss. Absolutely zero recognition of the other 7 people on board that aircraft. At least until the next day.
I'll start by acknowledging that Kobe's wife and her surviving children are suffering the sudden and tragic loss of their family members. NO ONE understand this better than we do. I'm using the SUDC 'we' here. Similar to the royal we, in that I am relating the feelings of a loss that a very small subset of our culture can understand. Everyone experiences loss. Not everyone experiences sudden and/or tragic loss. Even less people suffer that loss and live through the trauma while it unfolds. And, in the most rare of causes, that sudden, unexpected tragic loss is....wait for it....unexplained. But, I'll get to that later. Sudden unexpected loss is horrific. It is a massive blow to the system...all your systems. There are many ways that your life can implode, but this is by far one of the most painful. That deep rooted pain is amplified by your surprise. It is in our nature to prepare. We have done so since the cave man days. Preparing for the hunt, preparing for the winter etc. In the modern era even the most impulsive of our species prepare for day to day life. No one can prepare for sudden unexpected loss.
My problem, and based on the SUDC community reactions today, where most of us have an issue is with the MASSIVE amount of attention this one loss is getting. Of course, Kobe was famous and loved by many around the world. His sudden loss would get a ton of attention.
But each of us, some more recently than others, have lost a child...suddenly, traumatically, and with zero explanation as to why. Most of us held our dead children, attempted to revive them, and when that failed had to watch someone wrap our babies up in a body bag. And we all know that there are hundreds of parents who did the same. At least 400 mothers and 400 fathers every year in the U.S...that we know of.
Our children's faces won't go viral. People won't build murals and memorials all over the world honoring them. In fact, their deaths will largely go unnoticed and unrecognized. The government and the community at large have little concern for these deaths. Let's put it in perspective: In 1969 SIDS was defined. SIDS is the sudden death of an infant under the age of one year, the cause of which remains undetermined after thorough investigation. And while 'SIDS' deaths have decreased in the last 20 years with the promotion of safe sleep habits, there is still no known cause. At least 2500 babies die each year from SIDS. And after 5 decades, we still have no idea why. That's over 6 times the number of known SUDC deaths annually and there has been little progress toward a cause. For those of you who don't get where I am going with this...let me spell it out for you: What hope do we have of getting answers for SUDC, when we aren't making any progress toward identifying a cause for SIDS????
I'm new to this super shitty club. The SUDC club. But sometimes new blood breathes new life into a cause. Here are my two main concerns and therefore the new focus of my life:
1. SUDC was defined over 20 years ago. SIDS almost 60 years ago. Still we know very little and there are very few studies asking any questions, let alone the right ones...and honestly, who knows what the right ones are at this point. Another SUDC mom told me the other night, that since we haven't eliminated any causes, every possibility should be on the list for investigation. I hadn't thought of it that way, but boy is she right.
2. Awareness. There is about zero of this going on, expect for on a micro level in communities where families have lost their children and have subsequently started campaigns named after their children. This is great and I am not diminishing anyones effort, as I am doing the same. But it is NOT enough. Physicians, pediatricians, paramedics, fireman, police officers, coroners etc, have NEVER EVEN HEARD of SUDC. So, add that to my to do list: Make a list and start making calls and sending emails. Don't stop until every pediatrician in Colorado has heard of SUDC. Then pick another state and start again.
That brings me back to Kobe. His loss, while tragic and untimely, was only one of the 9 lives lost in that crash. The mothers, fathers and children lost along with him will be mourned by their families in equal measure to those in Kobe's family. Their names, faces, and lives deserve recognition as well. And it's not that they have the same clout with the media or that they should. It's that our society, in its' facebook, instagram, kardiashianesque social media obsession assign more value to Kobe's life than to the others. Like we 'know' him. News flash people, you don't know him. His loss will not affect your life. It will however deeply affect the lives of his family members. The thousands of children that have died from SUDC over the past 10 years and their parents would give anything for our children, our plight, our need for awareness and answers to be heard or seen by a tenth of the people who are mourning the loss of a man they never met. That would be a success for the SUDC community. But we won't get it. Why you might ask? Because no one wants to hear about dead babies and dead children. Why don't they want to hear about it? First because you can't wrap the story up with a bow and tell people how they can protect their children. These stories are by definition left with no answers. It's an ugly, scary, dark, lonely place that people would rather not exist, so ignoring it is easier and more simple and allows us to go about our day watching cat videos on YouTube and ignoring the pain in the world. It's the same reason the main stream media doesn't talk about all of the military deaths occurring abroad. It doesn't suit the media circus goals. Let's make people care about what we think they should care about. And that isn't dead babies or dead children or dead baby Vail.
I WAS ONE OF THOSE PEOPLE. Posting my pit bull rescue pictures (still a worthy cause in my opinion) and championing other causes...
Then my baby died. And no one can tell me why. The pain and the emptiness left by my child are so great that there is no room for anything else anymore. No room for other causes, no matter how worthy. No room for viral sadness over the loss of someone I don't know. Anyone who has known real loss will understand. They will understand that I am not diminishing the tragedy or the loss of this public icon and his child. In fact, few are more equipped to understand the lasting affects of this loss more than I am. I pray for his family to find peace and hope that they can hold on to their sanity, one day at a time. That is all I can hope for them...and for myself.
So, in the face of such a public tragedy, us SUDC parents will huddle up and speak the unspeakable pain we feel to each other. Knowing that no one else will understand why we may lose our ability to act rationally under such circumstances. We are all screaming on the inside "WHAT ABOUT MY BABY?" Why doesn't anyone care about my child? We all feel it. We all want to scream at the top of our lungs that our beautiful baby deserved that kind of attention. Her death should have affected the world the way Kobe's did. Vail was at least that special. She was to us. And that has to be enough.
Off the soap box I climb and remind myself that I cannot lash out at everything that triggers my pain. If I did, that clammy grasp I have on my sanity would quickly slip away.
So what do we learn from all this? Steve says I cannot end this on such a negative note. We learn that it is easier for people to relate the tragic loss of a famous athlete than it is to think about their child going to sleep and never waking up. We can understand a helicopter crash. We can relate to that loss. As a society we cannot face child loss. We cannot live in that world every day. Yet we all do. So I call you to action...SUDC moms and dads. Let us pull together, let us leverage the energy of our individual losses. Let's define goals, let's design our own research studies, let's stop being prisoners to the lack of answers. We need to go out in to the world and be our own advocates, no matter how painful. We can't wait for anyone to do it for us. No one will. I'm on a mission. Want to join me?