When Easter Feels Like Good Friday

               Easter was this past weekend, and while my boys were down with family in Bloomington and friends were gathering after church for champagne toasts, brunch and basketball games, I sat on the floor next to the couch, where Elena was sprawled out, catching sprays of vomit over and over again.  My beloved daughter once again suffering, me once again at her side, helpless and exhausted.  It didn’t exactly have me in a celebratory “resurrection” mind-frame.  Rather, it was more Good Friday vibes, lamenting, dark, questioning, reeling from an unexpected setback when things had been going so well.

               It feels a bit redundant to say, because much of the last nearly 15 years feels like we’ve been riding wave after wave of the same patterns, the same hardship, but it does feel like this has been a particularly rough season of tumult, to put it mildly.  In the timeline of all we have experienced with Elena, the last several years have often felt just as dark and unknown as those first couple days in which we headed home with a baby we didn’t recognize, with a diagnosis we didn’t understand.  I can’t begin to count the number of times Chad and I have looked at one another and shrugged, completely at a loss for what was happening, without any knowing of how to proceed.  It has been years of desperately seeking answers to find some relief for some of Elena’s suffering, making impossible decisions, learning to pivot constantly, surrendering to the whims of Elena’s damaged body along the way.  The swings from relative stability to chaos have been dramatic, frequently occurring from day to day or hour to hour.  In fact, I’ve began to reply to inquiries about how Elena was doing with, “Today is a good day or this morning she was good.”  Our good moments can deteriorate in a matter of minutes, and the strain on my own psyche to adapt to these swings has been an intense purging of whatever remaining type “A” personality I had left.  Between Elena’s shenanigans and two boys constantly in motion, life has become a series of constant adaptations. Yet, somehow, I have also found it a welcome and constant reminder of the freedom in living this way, to live, to be, to exist, in the present, letting go of any handwringing over the future or grimacing over the past. 

               Existing in this space, experiencing the violent swings moment to moment has inevitably come with a giant dose of grief, but, boy what I have found on the other side, the appreciation for each wonderful, peaceful moment of the day has changed me.  A day without emergency medications, vomit, a call from school, a distant, silent Elena, a frantic dash out of one of the boys’ ball games is deemed peaceful.  A day with a contagious Elena laugh, endless grins, hearing her singing along to her music, listening with her to the sounds of world around, a snort, a hilarious side-eye, a full-night’s sleep are sacred and cherished, deemed joy.  These, these are the things that are meaningful, small moments that string together my days, weeks and months.  I find myself deeply aware of these simplest of moments, and the good days, the good moments tend to anesthetize whatever devastation lies in the bad.

               Some may call this redemption, this refinement process, this zeroing in on the crux of what truly matters, finding beauty and joy in the minutiae, even and especially when things feel heavy and dark.  For a long time, I’ve thought redemption meant returning what was broken to wholeness, and ultimately I do believe in that truth but I’m also learning that redemption can mean a restoration of the ability to discover hope in the midst of despair, to find beauty in the ugliness of grief, to have joy when your circumstances are afflicted, to shake my fist in rage at God and then run into His infinitely open arms.  None of this changes the suffering of my child or deletes the hardship every day holds or assures me of a rosy path ahead.  But, it adds immeasurable value, tangible meaning to the life that I am living, resting in the gift of a knowing and changing heart.    

               As the conflicting haze of my “Good Friday” feelings began to lift a few days later, my heart finally landed upon its Easter morning.  I felt the relief in my girl’s returned smiles.  I found hope in her resilience.  I rested in the peace of a prayer from a listening friend.  I saw the beauty of a clear-blue sky and a greening landscape.  I remembered the unfathomable love of my God who, despite all my attempts and outrage, has never abandoned me.  I felt the swell of gratitude not just for an ending that is promised to be redemptive but also a story that continues to unfold, urging my own heart and understanding to continue to change and grow.  Suffering inevitably sloughs off the unimportant, the excess, revealing truth and clarity, even though in the midst of it feels as though you’re only groveling to escape.  I’m assured, even when I seemingly forget, that my Easter morning will always come, bringing with it a fresh perspective and a deep, abiding gratitude for the sweet, small moments in each day.