Simply put, Flicker is my son.
At this point it would be appropriate to launch into stories and anecdotes about the nuances of his life – his personality, passions, shortcomings, tendencies, dreams, quirks, style – but these details are unknown because he is still in the womb. His outwardly life remains shrouded in mystery, a mere point of speculation based on familial traits (and some high hopes, of course).
When I read stories of personal triumph over adversity, regardless of the flavor, there is often the sentiment of not being fully defined by it. Reducing a life down to one trait – a cancer survivor, a reformed addict, an immigrant – fails to account for all the dimensions that make humans so complex. We are wives and mothers and sisters and friends and coworkers and runners and pessimists and data analysts and pragmatists and survivors and class clowns and chocolate lovers all in one being.
With Flicker, I struggle because his diagnosis truly is the one dimension of his being that is known; the only one I can verbalize with certainty. Flicker has Limb Body Wall Complex, a little known congenital condition that leads to series of unknowns:
- No known cause;
- No genetic links;
- Almost no published research or available data based on its extreme rarity;
- And the most heartbreaking of them all – no known survivors.
The cold words “incompatible with life” are what doctors use to describe Flicker’s diagnosis; words which I am still unable to process. Consequently I live each day knowing that the child growing inside of me – my son – is only going to know his protected world of the womb and not the dynamic world in which we live. A realization which is, as you can imagine, soul crushing.
I am not going to spend any time writing about the medical conditions that accompany Limb Body Wall Complex and the profound impact they have on Flicker’s development. Rather, I hope that this series of writings can serve a few purposes:
#1 – To reduce the alienation that is felt upon grieving infant loss.
While the specific circumstances of my experience may be unique (as are all diagnoses and the context that surrounds them), the loss of an infant is shared through many communities in the form if miscarriage, chromosomal abnormalities, the long tail of rare conditions (that when aggregated become less so), unexpected sickness, and an infinite list of tragic circumstances beyond any bound of reason. I am not alone in this, and neither are you.
#2 – To verbalize a world around Flicker that becomes more than his diagnosis.
Flicker’s world and my world are inextricably linked, so this second purpose is admittedly more for my own processing than anything Flicker will likely be able to appreciate. Thanks for participating in this form of therapy for me.
#3 – To ask for prayer.
The third purpose makes me nervous even to type out because I am generally not one to comfortably share my faith. But it’s impossible to talk about Flicker and my world with him in it without leaning on my faith in God. I believe in prayer, and if you do too I’d love it if you prayed for me, for my husband, my family, and of course for sweet Flicker.
With that, I turn this site over to life with sweet Flicker, however short it may be.