October 05, 2011

Unwrap It Up

October is SIDS/Infant Loss Awareness month. I've made a decision to do my part in participating any way that I can. I've wanted to get something out there for a while now, but I've recently befriended a great source of inspiration. I've realized that the silence of this dis-ease is, by it's very nature, a true cancer. I've been quiet about my experience for 3 years, humbly suppressing any gained wisdom or knowledge. Maybe I thought it was just something we had to go through, as we were so often told. Maybe I thought with enough passage of time some sort of understanding would unfold. Maybe I thought ample therapy could help. But I still wake up every single morning with a gnawing reality; I lost my son, he is never coming back. Sometimes my dreams will momentarily stun me into believing this isn't true, but I quickly regain equilibrium. I am a bereaved father, in love with a bereaved mother. My unsuspecting mantra. Who would have guessed?

It's difficult to define SIDS awareness. It's an oxymoron, really, because SIDS by definition means unawareness. Unaware of any explicable cause of death. This is a frustrating conclusion for a parent to face, and an even more frustrating causation for a death certificate. SIDS has morphed into fear mongering over suffocation, leaving our babies to lie alone in cribs on their backs with no blankets and barely any clothing, crying out for their mother's soothing affection. I've been there, I've seen it elsewhere. It is truly revolting. One mistake Jamie and I will never make again as parents is buying into the debilitating hype that SIDS is preventable by certain pacifiers and sleeping behavior. This is simply not true. SIDS has become one more way to dupe parents into thinking they have control over something they don't. Oh, and you can make profits galore. Pick up any baby product these days and there will be something about SIDS. "This 'product' helps reduce the risk of SIDS". It's all done to profit off of your fears and insecurities, and it should be stopped.

I could go off on that forever, so I'll spare you my own opinions about it. I realize every parent needs to do what makes them feel comfortable and safe. Increasingly, however, I've become more sensitive to the propaganda and shear nerve of the medical community with regards to SIDS. Their definition is very slippery. They continue to call suffocation SIDS and thus perpetuate the lack of information parents receive. If you are reading this and you are a parent then I challenge you to define it for yourself right now. What is SIDS? What do I think I'm doing to prevent it? Chances are you're doing (or have already done) what the medical professionals tell you, which is nothing more than not allowing your baby to suffocate. Yes, we need to be aware of our babies environments and the implications of possible hazards, but SIDS is not suffocation! It's a tortuous stigma for a parent to have to carry, one that is grossly misrepresented and one that I find terribly offensive. I do have a sense of peace knowing that I had nothing to do with Abe's death, but there is something else that haunts me. Thousands of babies will continue to die from this unknown on/off switch hidden inside the human brain if we don't address it head on. Bad statistics and egregious nohow will only heighten our unawareness and stifle any possible cure. We need leadership, we need research, and we need it now!

So this is my contribution to the cause. I lost my son to SIDS. It's not something I will ever feel OK about. It's a wound as raw as time, and time never ceases. But in the spirit of this month of awareness I really wanted to push myself to word vomit all that I know about the issue, which is more than just an issue, it's my life. My intent isn't to make anyone feel uncomfortable or alienated. Quite the opposite, really. Very few dip their toes into our water, but we are eager and ready to share. I think people would be surprised at our willingness to talk about our son, his death, our grief and the absurdity of SIDS propaganda. Indeed, talking about Abram is the only thing that lets the voice out of our hearts. He holds an indefinite claim deep down inside of us and we can be content with that. Our biggest fear, however, is that Abram will become forgotten to the world. It's a fear that every grieving parent feels. Judson has a brother, and he deserves to know his brother. Abram's memory is something we are obligated to fuel as part of the engine in our family. If we let our hearts close up to the pain that's in tandem with our joy, our family will suffer terribly. The realism of this loss is something that we will never evade. So I'm just gonna throw it all out into the blogosphere, all in good time, and y'all can digest or refuse as you wish.


This is my awareness.


3 comments:

Anonymous said...

God bless ya'll...Steve

Maggy said...

I love your aggressiveness, Josh! It is something that's just "hushed". I'll help in any way I can. Whether its with contributing towards SIDS awareness or helping to keep Abe's memory alive by writing about him, etc. I am here for you guys :)

<3's,

Maggy

Jenn said...

You have certainly brought awareness to this girl!! Thank you for your honesty.It is so refreshing