Hope & Hard Decisions

At the ripe and wise old age of 27, I was slapped in the face with the reality of cold, hard life.  In one moment, I went from post-partum woes and a pretty darn uncomplicated life, to watching my infant daughter be resuscitated before my very eyes.  When you stare death square in the eyes like that, you are instantly forged with a shift in perspective, like a blurry image snapping into focus.  It’s a sudden crash course in letting go of control (rather, understanding there is no such thing as control) in exchange for a deep, abiding gratitude for each and every breath that we are given, for the ability to grasp the fragility of life.  In that moment, and in the many moments after that, everything that I had deemed “important” up until then fell away.   

In the aftermath of that instant sifting of life priorities, perspective was of little solace while I writhed in a deep well of grief.  Yet, I intrinsically knew that as I walked through the dark, I was picking up more than just the pieces of my unrecognizable life.  Those early days, I spent hoping that each minute, each hour, each day would bring progress and healing and restoration.  And while, truly, it did, it just didn’t show up in the way that I had begged God for.  What showed up was, in fact, progress and healing and restoration, but it was just in me and not in the physical healing of my baby girl. 

I can’t quite remember at what point I began to realize this, and began coming to terms with valuing Elena for exactly who she is, and accepting who she will never be, but in the years that I’ve been processing this, the grief and hardship has not ceased.  This, perhaps, is the hardest pill to swallow – that, this side of heaven, there will be no end to this storm.  There will be no end to my grief.  There will be no end to Elena’s physical suffering.  There will be no end to the impossible decisions we have to make on her behalf. 

Several months ago, I began a Midwest search for doctors who could help alleviate some of the ongoing physical challenges Elena has been dealing with for the past several years.  Though she is unable to share with us how her body feels, we know it pains her and causes a slew of secondary and tertiary issues that have arisen as a result of her upper body spasticity.  We landed at Lurie Children’s in Chicago and have made yet another unimaginable decision to undergo surgery in a couple weeks with the hope of easing some of Elena’s suffering.  The surgery is terrifying and heartbreaking and I’m so very angry that there seem to be no choices but this one, but I have come to understand that this is the theme of the road we are on.  A long, arduous road with no good choices and no guaranteed results. 

As her Mother, I’m grieving this decision with the same incredulity and fervor that I did for her when she was a mere four months old in critical condition, clinging to life.  I can’t believe I’m here and I can’t believe I have to make these decisions for my beloved child.  My grief manifests as a sort of adult temper tantrum where my insides are screaming, “It’s not fair,” and “I don’t want to do it!”   But, alas, I don’t really have options.  I don’t really have a choice.  And the injustice of it is obsolete.  I scheduled the surgery and surrendered to my grief.

Unfortunately, this is but one grievous decision in a long line of decisions Chad and I have had to make for Elena over the past nearly fourteen years.  As I have experienced time and time again, once the dust settles, and the tears have dried from my eyes, a fresh new perspective is birthed out of the ashes of whatever sacrifice has been made.  This has become my hope.  That I will add yet another chapter of perspective, of truth, of compassion, of courage, of deeply rooted gratitude to my life that I can stick into my back pocket to access when the storm picks up yet again.  I carry hope that what I have endured will make me be just brave enough to face whatever comes next.  My hope lies in the goodness of God and that as He has, and as I know He will, progress and heal and restore all that has been broken.