Well, That Didn’t Go According to Plan

Well, where do I begin?  Like so many things in this life with Elena, just when things feel like they’re going right, the world goes topsy turvy.  Last week, we traveled to Chicago to have a Cervical Ventral Dorsal Rhizotomy (say that five times fast!) surgery for Elena, all in the hope that it would give her relief from the extreme spasticity she experiences in her upper body.  I guess I should’ve known, but there’s no such thing as simple or straightforward with Elena.    

Elena’s body is so complex and she is unable to tell us what hurts, what is wrong, what is bothering her, and so on.  In the last couple of years, we have noticed that Elena’s body struggles to find its baseline or equilibrium when she is exposed to homeostatic changes, either in environment or in her body.  In other words, her body gets out of whack with the subtlest of changes and it throws us for a loop trying to figure out what is wrong.  Turns out, spinal surgery does just that. Even though this surgery went as planned and met our expectations as far as results, the complications definitely caught us off guard. 

For patients like Elena, things are hardly ever black and white.  There’s too much gray area.  And that’s where we’ve been the last week.  Rarely do we ever get a basic, here-is-the-problem-and-here-is-the-solution, type of situation.  It’s more of like, here’s what’s happening and then we spend 48 hours guessing what the actual heck is going on, and maybe there is a solution and maybe we just have to wait things out.  It’s an excruciating place to be, as a parent, helplessly watching your child suffer, agreeing to submit them to more pain and discomfort in the hopes that it helps solve the problem.  This nightmare space is where we spend so much time.  Every choice, every option is always bad and almost always means more suffering.  Blessedly, our girl is forged with iron and is the toughest, most resilient soul I’ve ever known.  She endures it all, all the pokes, the pukes, the pain with grit and toughness. 

All the while we, her parents, grieve and ache and wail at the suffering of our child.  There aren’t words that adequately articulate the overwhelming fear and hurt that I feel every single time something like this past week happens.  I am strong because she needs me to be strong, but every now and then, the dam breaks and I am consumed by the terror that I’m losing my girl, that I’m watching her slip from my grasp, that things have turned and will never be the same.  I realize, that all life is this way, we are never guaranteed our next breath, our next day, but living through all we have with Elena keeps that truth alive and right in front of my eyes and I felt that threat palpably this week.  If I’m totally honest, what scares me the most, is losing more of her, losing the light that shines so brightly in her big beautiful gray-blue eyes.  Losing her laugh, losing her smile, losing her humor and teenage attitude, losing the way she listens to the world around her.  This singular fear was very alive and real this week and truly, it was unbearable, a weight that I simply couldn’t bear for one second.  We lost a piece of Elena nearly fourteen years ago, and the fear of what would be left of her, who she would be, I thought then was terrifying.  Losing again, losing more, is unimaginable. 

Despite a resolved ending, a temporary scare, a momentary fear, trauma is undoubtedly left in its wake.  It will take me months to digest and process the events of this past 12 days.  The memory of the fear, the dark places that your mind goes when faced with harsh realities, the anxiety of not knowing where the day will lead, what you will find, the emotional overload, the stress of making hard decisions you’re ill-equipped for, all of it, takes its toll on my heart and on my mind.  And while I know it’s yet another something I’ve had to overcome, a show of my own resilience, the grief feels all the same.

I will undoubtedly be spending the next few weeks, months unpacking the breadth of God’s goodness throughout this.  His faithfulness, His mercy, His love.  We felt it all and what reinforcement it is to my soul to, yet again, see God, feel God, know God in the dark and painful parts.  Trusting that no matter the daunting and fearful circumstances, He is there with me.  I felt the evidence of Him as I drove down I-65 towards home today.  I cried from Crown Point to Winamac (with Elena snickering at me in the backseat).  Yes, it was a release of the tension, the stress and the challenge of these past several days, but more so, I was overcome with gratitude.  Yet again, in the aftermath of such hardship, my heart first overflows with gratitude, no doubt a mercy.    All of the love and support we have felt this week has worked seamlessly to redeem a terrible situation.  To each of you who sent me a message, a text, a call, all of you who prayed for us, who showed up to care for the boys, who stocked our refrigerator, prepared snack bags, sent cards and flowers and goodies, arranged meals, sent DoorDash and Starbucks gift cards, who sent me to get a massage, did our puked-on laundry, dropped off food and gifts at the hospital, and who tried to sneak through hospital security to get me a bottle of desperately needed wine, to all of you who covered everything without being asked, who loved us from near and far, our hearts are humbled and overwhelmed by all that each of you has been to our family the last 12 days.  Your love fueled us when we felt depleted.  And we are blessed because of it.