There is a blogger whose words were a huge inspiration for me to start writing like this. And yesterday I read another post of hers that floored me. The post, titled, “Waiting to Exhale” on her blog, What I Would Tell You, outlines how, as a mother of a medically fragile child, she finds herself holding her breath…constantly: waiting for the ambulance, watching her child in pain, through medical procedures. And so on.
As I read: “I held my breath every single time you screamed out in pain and anguish from things most people take for granted like pooping and eating. I held my breath because I knew that if I didn’t, I would be flailing on the floor screaming from my heart breaking over and over to witness you in pain.” I felt a familiar sensation creeping through my chest. It’s not a pain exactly…perhaps it was a pain to begin with, but with time and repetition the nerves have deadened. It’s a hard rock in my chest, a heavy blockage that resists the flow between my heart and my head, my chest and my mouth.
You see, my years of yoga taught me to breathe. I was taught that the breath, pranayama, is part of yoga. And while I do not practice the poses of yoga (asana) regularly these days, I do yoga more than ever–insofar as I have kept breathing. It has kept me (somewhat) sane and allowed me to (sometimes) compose myself.
For me, it has not been the breath I have lost through the trials of ER visits, seizures, sloppy doctors, forgetful nurses…and the pain and fear I read on my child’s face daily. Not the breath. I breathe. I keep calm (for the most part). I think strategically. I try to create the (sometimes illusion) of deference to medical professionals.
It’s my voice. I have lost my voice. It is caught up in a tight ball in my chest…that screaming, angry, argumentative, resentful, flailing voice…like a circle of hell that Dante forgot surging inside me.
Don’t get me wrong. I speak. Loudly and often–as ever. But, I have learned to speak for my child. In her interest I have resisted the urge scream at the unprofessional and unprepared doctors who have crossed Esmé’s path. I have held my tongue over minor nursing errors in order to keep on friendly terms with these ever important liaisons in the hospital. I have stopped myself short of needing to show just how much medical knowledge I have when it doesn’t matter to Esmé’s direct care, in favor of nodding and smiling politely to people who tell me what I “should” be doing for my child.
Somehow I have stuffed my snide remarks about other parents concerns that their 50% percentile child isn’t eating enough, or isn’t growing fast enough…to their complaints about sleeplessness, early walkers, smart mouths, and other things that have a foreseeable end and a parallel in the lives of most every parent on the planet.
And I have guiltily tucked away so many of my own frustrations and fears knowing that the friends I have made along this journey have lost children or are preparing to lose children…I feel sick giving voice to these feelings when I am ever-aware of that abyss off to my left–the abyss of a lost child.
And the tears I might have shed, the crying that starts like a sharp pain–often at the strangest things–but never seems to come to fruition, evaporate leaving a hardend salty shell within my ribcage. I can’t truly cry. If I cry I’ll stop…and I can’t stop.
I want to open my mouth in animated yawn and spill all of this out. I can envision a profane wail filled with the fear, the anger, the distrust overflowing my lips, flooding my world. I know it is there because I have stopped it quickly the times it has started to squeak by my lips with the gust of air rushing in an updraft. It wants to rush out at a particularly unhelpful hospital administrator, or a egomaniacal doctor, or the person staring in disgust as I vent my child’s painfully volcanic belly.
I suppose it is a form of dishonesty. But I damp it down. I swallow it. And if I am particularly together, I try to muster a smile while this hard spot pulses like a second angry heart.