Comparing: Grief Olympics

ethan smile

My friend Andrea is a prodigious athlete.  She runs for speed as well as for endurance. She fenced in college (she’s a wizard with weapons), then took up competitive running long ago, and has since finished or placed in I cannot tell you how many biathlons and triathlons.

The gal frightens me.

As she does anyone who gets in front of her on the track, because – eh-hem, move over – this is one driven creature.

That she’s also a scientist frightens me, too. (We already know how I feel about things numerical, and I recall science requires a few numbers here and there, and so we’ll just move swiftly along from that topic so I don’t break out in isosceles-trapezoidal boils.)

But what gets my attention more than anything Andrea is or has done, more than her fencing jumpsuit or orange lycra shorts for her latest what-have-you-thalon or even her mad scientist lab coat, is the heavy cloak she wears as a mother.

She has three boys and one of them, her firstborn, Ethan, is severely handicapped.

Family Rediske

Ethan suffered hypoxic brain injury at birth. This left him with cerebral palsy, epilepsy, severe developmental delay, no purposeful movement.  He cannot form words, he cannot crawl, sit up straight or walk, he cannot care for himself in any way, he cannot see. He is ten years old but his developmental equivalency is measured in months. His unending medical needs make Andrea and her husband Chris’ home a battle zone with concourses of nurses and therapists trudging in and out both day and night.

Then there are those wars with school systems. The wars with insurance companies. The wars with the armies of medical professionals.  The wars within Andrea’s own chest cavity. The list of assaults goes on.

andrea ethan

My firstborn, on the other hand, was ill precisely three times in his whole 18-year-and-five-months of mortality. A few hours total of illness, I’d wager. Maybe twenty hours, tops.  A mild allergic reaction to citrus juice. A normal inner ear infection.  And of course that one time I gave him food poisoning with a bad batch of bolognese. All that night, my 12-year-old convulsed and heaved between polite color commentary, assuring me from his crouched position over the toilet that it was (barf) not my fault (buuuurrrrrlch) and that he (puke) would be okay for (whaaagh) basketball (hurl) tomorrow.

That, in a nutshell, is what my son knew of illness. That’s all I witnessed of my firstborn son’s conscious suffering.

In the time we’ve known each other, Andrea and I have exchanged notes on the nature of major loss. In these exchanges, I have never felt that she has pitted this grueling day-to-day loss of her son against another loss she does not know, the sudden death of my son. She has never even intimated there’s competition between the two, a sort of Grief Olympics, you might call it. And I try, I do, to give her and her stunningly beautiful Ethan the same respect. I hope she senses that. I readily admit to not knowing the air pressure of the kind of galaxy Andrea and her family inhabit.

andrea ethan 2

But layer by exhausting layer, her story has given me the gift of beginning to understand something I did not understand five and a half years ago, at a time when I swore to heaven I wanted to experience Andrea’s galaxy firsthand.

andrea ethan 3

It was that first night I stood in the ICU over the body of my robust, muscular, athletic but comatose son.  That was the night I poured out my tears to my Father in Heaven and vowed that if He would let my child live – in any state whatsoever, just live – I would care faithfully for this child of mine. I would consecrate all I was and would ever be to caring for my boy as God would.

Let me keep my son,” I wept and pled and begged and insisted. I picked a fingertip-deep hole in the naugahyde arm of the metal-legged chair, I remember, drilling the idea into Divinity’s head. “I can already see in my mind where we’ll set up his hospital bed in the Munich apartment. Right there. I know where I can find daily medical care. I’ll educate myself, I’ll suction his lungs, adjust his oxygen, do nothing else in life besides care for him, stay with him. Read him Goethe and play him Brahms and stroke his stoney limbs.  God in heaven, don’t take him from us. We’ll all die.  I need him. I’ll die. . .”

They were furious prayers. I get sweaty just writing them.

What was I asking for? I didn’t know then in my breathless desperation. Andrea has an idea.  But I did not.  In that moment, I couldn’t imagine anything beyond the cliff that we were standing on that had us dangling over the abyss. Had God granted those pleas, I don’t know what person I would be now, stroking the arms of whatever remained of my son, herding strangers in and out of my home, funneling every nanogram of energy and every last cent into sustaining a life that is disintegrating before my eyes anyway. I’ll tell you: I’m quite sure I wouldn’t be writing books. Or writing this blog you are reading right now. I would have no surplus anything for such an undertaking. I would maybe have to take up running really hard and really fast for the sole purpose of  metabolizing the raging hurricane that bangs relentlessly in my thoracic cavity. Maybe I would become a triathlete. Maybe I would crop my hair to a snappy-sleek black Powerwoman ‘do.

And I would wield some real as well as some figurative swords. Maybe.  But can I know? Can any of us know what we would do with someone else’s lot? Maybe instead of becoming stronger I would cave. Maybe my whole family would die and I would die, too. I would hope not, but really: how can I know?

andrea ethan 4

Observing Andrea, I get a flimsy, fleeting glimpse of just a corner of only the slightest edge of an expansive world I was asking for that night in the ICU. And I marvel, thinking I wouldn’t make it.

But then I think, well.  . . I ‘ve made it this far through something else. . .

And finally, I must digest the plain reality that my fate and my loss have been of another sort.

ehtan red

“Isn’t it odd?” Andrea wrote in a treasured email exchange, “You’re grieving the son you once had and lost.  And I’m grieving the son I never had but am losing every day.”

And she will lose him. She knows that. Which makes the enormous effort in keeping him alive that much more – how can I describe this? – that much more godly, in my eyes.  Andrea moves hour after hour after week after month after year along that crazy split path that reminds me of two side-by-side moving sidewalks, the kind you’ve stood on in airports – with one going quickly in this direction,  and the other going quickly in the other direction – she straddles that impossibly schizophrenic and simultaneous divergence of both frantically sustaining and inevitably losing the life of this beloved, perfect son.

rediske ethan

Now you tell me: is there any harder race than the isometric marathon of the soul?

So my friend Andrea, a weapon-wielding, race-running, warrior of a mother would be the last to say she’s in some competition about whose loss is worse. As if, with all that she and her family are dealing with, she has bandwidth for enlisting in some sort of Grief Olympics.

But she does have an Olympian’s spirit, which her oldest son, who coos like Chewbacca and sighs like the newest initiate to Mount Olympus, has inherited in full.

ehtan alone smiling

For starkly beautiful descriptions of Andrea’s ongoing life with Ethan, go here and here and here.

17 thoughts on “Comparing: Grief Olympics

  1. I am a friend of Andrea’s from her church congregation growing up and I just wanted to thank you for your beautiful tribute to her. Wow. You are an amazingly talented writer and both of you are amazingly strong women. Thank-you for sharing just a little bit of it with me today.

    • Kim, I, too, think Andrea is a titan. And I’m certain she’d be the first to credit her good husband, Chris, and the sustaining hand of God. I’m fortunate to be encircled by people with powerful stories to share. Warmth and love to you, Kim—M.

  2. Once again I’m blown away. I’m blown away because of your grace. I’m blown away because your story sounds so much like my own. Only my brother – my twin was 18 years old also. I remember having the same reaction and prayer to God. Please, I’ll do ANYTHING, change his diaper, anything. My brother was brain dead and we HAD to pull the plug. I remember meeting someone like your friend Andrea, later and we exchanged thoughts and feelings. I finally understood that there MIGHT be something worse than an unexpected, untimely accidental death. What if I had to live a very slow death every single day of my life, much like your friend Andrea. I don’t really know which is worse. Sometimes, I’d give anything to hold him one more time. Andrea gets to do that. But I’ve never HAD to do the work that Andrea does on a minute by minute basis.

    Just thank you so much for sharing. I wish I had better words. Your posts just really touch me and make me feel again. You’re an amazing person to be able to put grief into a painted word picture.

    • Shel, and you’ve made the point beautifully. We cannot know, really, what another’s experience is. And so our highest inclinations to accept as true their cries for sympathy or support are the ones we should follow, not our lower inclinations to judge, minimize, compare, size up, compete. There are losses we all will experience by virtue of our mortality. And then there are Losses. And they are unique, delicately colored, cumulative, and often (very often) unsharable.
      That’s my next post. The unsharable ones. . .Oy.

      And I love Andrea, too. And Renée from the previous post, and all people carrying the weight of true love in their arms.

      thanks to you again for adding your strong voice to this discussion. Much warmth—M.

  3. What an absolutely perfect tribute to our Andrea. You’ve captured so exquisitely the wrestle that never ends for her and her family. And we can’t possibly even begin to imagine how it is for Ethan’s soul…all that he so patiently endures because he has no other option. There are mountains in every life, but both of you have been forced to traverse a veritable Mariana Trench. I stand in awe of your strength and the will to go on and THRIVE that you exhibit. There is no comparing one life to another, but there IS benefiting from the examples of others. I’m glad to know you both. ♥

    • Blue, It is an inspiration to be connected to people who are deep sea divers in the ocean of pain, isn’t it? The lessons I learn from pure observation just don’t seem to end.

      You’ve subtly touched on something that’s subject of some forthcoming posts, and that is the distinction between mountains and Marina Trenches, as you put it, and what our responses to that might be. As you say, there is no comparing one life to another, yet at the same time we can be instructed in our own limited world of suffering if we’re willing to look around at the vast world of human suffering.

      And as you know, it is vast. . . .

      Much love, Blue you. A warm sisterly embrace—M.

  4. Such a lovely post Melissa. Thank you!

    A very important message I have taken away from this is Ethan’s smile. Whatever damage he has had to endure you still see such happiness in his face as his mother loves him and holds him.

    Ethan is very similar to my little nephew I told you about. My nephew only survived 10 months because his brain damage at birth eliminated his ability to swallow. He was on a feeding tube, and even though he was suctioned constantly he would gag and the fluid would go into his lungs, scarring them to the point where he could no longer survive. My brother and his wife loved him as Andrea loves Ethan. It was so important for them all. He was a beautiful baby and I loved to hold him and kiss him and sing to him and let his older brother play around him. During his courageous fight to survive it was always important for him to know how loved he was. Ethan is testimony to that.

    • Drury-

      Yes, I remember well your description of your nephew. Harrowing story. Isn’t it stunning, the love humans can demonstrate in sustaining a life they know is rapidly and inevitably expiring? I’m simply rendered quiet by it. Something is happening there that touches on the highest impulses, that turns every other kind of worldly (by this I mean consumer-driven) “love” into a thin counterfeit. There are so many examples of that kind of utterly altruistic giving of self, I wish I could write of them all…

      Thanks for your sensitivity—M.

  5. Beautifully written, and rightfully a tribute to one of my other heroes…. In our own mourning times, those cycles of grief as our bodies fail us, it is only through a better understanding of these things that I can keep wading forward. There is a strength in understanding that though there are so many variations of grief and of rejoicing, sometimes both at once, that none need be competitive, and none need be “well, I cannot share my grief because someone else’s is more/less/different.” I feel like I’m at a masterclass in charity while learning from you all…. a better understanding of suffering long, being kind, being not puffed up, and seeking not our own….a better chance to pressing through in our own struggles….

    • Heather-I’ll keep these words and memorize them: “masterclass in charity. . .suffering long, being kind, being not puffed up, and seeking not our own.” It’s what I feel, too, when I get to write these things. I’m the one who is tutored in the process. Grateful for it, I truly am. Big soft hug…M.

  6. For all that you have related to of your dear friend my first instinctual response would be “I just can’t imagine”. I have two healthy children who have grown up into active young men. My oldest son had severe infant asthma which in of itself was so difficult for him to live and deal with in his first seven years. His mother and I did our utmost to give him a “normal” life in his infant years.

    But each time I reflect on the many challenges that we all faced together in dealing with this boy’s daily burden I suddenly have instant recall to a time in my own childhood that my mother and father were dealing with the gradual but assured loss of their own daughter who had cystic fibrosis. Back then any child with CF was expected to live to no more than five to seven years of age.

    My big sister Lynn survived this insidious daily battle with lungs plagued by a severe, debilitating mucous buildup which threatened her existence with each passing minute of each and every day of her delicate, precious life. She swallowed 150 pills each day to help control the adverse affects of this disease which gripped her life. A therapist came into our home daily to give Lynn postural drainage treatments to help keep her lungs clear…to maintain that breath of life she so richly deserved but was robbed of day in and day out.

    And if misery was not sufficient company mom and dad had to tuck Lynn into bed each night beneath a makeshift canopy resembling a tent that would contain the vaporizer mist treatment that helped minimize the threatening buildup of fluid in her tiny lungs, that would allow her a few hours a night relatively free of respiratory distress, allowing her to dream the sweet dreams of a toddler cuddled up with her favourite doll.

    Mom and dad lived through sleepless nights Lynn’s entire life, a matter of feet away from her bedroom where in their own they would lay in waiting, hanging on her every breath wondering if it would be her last. Their little angel’s life would not be a long one. She would never grow up to realize advanced education, motherhood, a loving relationship with an emotional and spiritual partner. She would not participate in her school’s athletic programs as her distressed lungs could not carry her through any physical exertion.

    Lynn, my extraordinarily beautiful, princess-like big sister Lynn…what life we would have had together. I would have been uncle to her own blessed children. I would have loved them with all my heart and being. I would have cherished this delicate flower ’til the end of time.

    I was four years Lynn’s junior and near the end of her age six years she was suddenly gone from our lives. I was alone, not long ago learning to walk, to run across the room to where Lynn would sit cradling her favourite little doll in her arms. Her huge blue eyes followed my every move. Her smile was radiant as a thousand suns. She was the light of our lives and now that light had gone out. I could not understand her absence though in my mother and father’s eyes I could see the despair, the distraught torment of a severe and irreversible loss. They clearly loved me with every fibre of their being yet I could sense that something had gone terribly wrong.

    For the remainder of mom’s life she could not bear to look at a photograph of Lynn for longer than a few seconds. She could not tell her son, and later her second daughter, of all the very special moments she spent with Lynn. She could only briefly reflect on an illness that tore that blessed little child from her arms after only six years. What they would have shared together. The pain was insurmountable for mom. Dad conducted himself with daily conviction, disciplined in his professional life yet what he and mom held silent between them their entire lifetime must have been horribly debilitating.

    Mom spent years of her life caring for handicapped children on a voluntary basis and I remember always marveling at how she could muster the courage and strength to love and care for those children and give them and their parents a sense of normalcy in their lives. Perhaps this filled the void they felt in the loss of their beloved Lynn.

    One day the young son of a neighbor was kidnapped from just outside his home. His frantic parents and a caring, compassionate community came together to search for that child, to discover even the smallest shred of evidence that would help solve the mystery of their beloved son’s disappearance from their home, from their lives…forever.

    It was then that mom stopped caring for handicapped children and obsessed over her own two children. The photo albums were kept neatly stored away, only to be brought out on occasion when my sister or I sought to revisit stilled moments captured in black and white by a camera’s unassuming, disaffected lens. It was her eyes I think, those gorgeous, large blue eyes that penetrated our own as a brilliant sunrise out of the darkest of nights.

    Lynn was a blessing in our lives however brief she was with us on this earth. She left behind a lifetime of memories, that beautiful little face and fragile, princess-like frame of her indelibly etched in our minds for all eternity. Although I was too young to consciously realize her demise Lynn lives on as a tiny miracle who touched our hearts, our minds and the very depths of our souls forever more. Mom and dad are now gone and in a sense I carry that torch of burden, that sense of loss for the beautiful child that Lynn was and I never truly lived to see. Still, somehow even at my tender age of two years on her passing, I too live to this day with a sense of void, a sense of wanting for a big sister I had only briefly.

    We were touched by an angel. I live to this day with a sense that she is always close, watching over my sister and I, relishing in the years that she did not share with us upon this earth though in her passing and thereafter her presence is felt and celebrated.

    Our presence upon this earth is perhaps measured best not in its longevity but in the mark we leave on the heart, mind and soul of those lives we have touched, however brief. The pain and unanswered questions remain but we will always have Lynn through distant memories, photographs and mom and dad’s brief though deeply saddened recollections that speak a lifetime of blessed moments…for we were touched by an angel.

    Melissa, what you have shared here with us about Andrea’s own time of life and eventual loss brought back many sensitive yet wonderful, deliberate reflections about my own sister now long gone. Thank you once again for doing so in such an articulate, compassionate way that you always do. It in some way surely helps us all to heal.

    • Don- Have I not responded to this yet? Forgive me! And even though I’ve read it four times already? Your ability to lay this out in such detail is a sign of how much you’ve grappled and clawed through it. Thank you, Don, for educating me, us. I obviously agree: your Lynn is closer than you perhaps know and can always sense. These worlds overlap and make one whole.—M.

      • Melissa, please don’t ever apologize for time…time to reflect, to absorb, to embrace, to relate. Heaven knows it takes me more than enough time to respond to what you have shared with us here and I say with all sincerity that I have found your writings more compelling, more honest, more articulate and more unselfish than any other I have read to date, here or elsewhere.

        You have gone through the unthinkable Melissa and still, still you find the strength and composure to express what you do and in such an eloquent, gracious manner. And for all of that you have my deepest empathy and respect.

        We are not unique in the losses we have suffered. It does, however, afford me comfort in the knowing that despite what you and your family have experienced you have come out of it all ok, you have carried on, and you must really, for your sake and for all that your dear son meant to you for all the years you shared together.

        There will always be difficult memories, there will always be hurt, yet we live in their memory, the wonderful memories…and with each passing day I have a growing sense, no, a belief, that we will both experience a reunification with our respectful loved ones lost, we will embrace them, feel their touch as real as real had ever been. We will know happiness in their midst…not just now though.

        In the meantime perhaps what we share in our written journey will help others in similar circumstance, and in turn help ourselves to cope, to accept life as it has unfolded. I do not mean to draw comparison. You had your beloved son for years, into his early adult years and for that the loss had to be incredibly painful and all the harder to accept. For myself, the loss of my older sister during my early infancy has meant the loss of what could have been, a different loss. Still, you had so many years ahead to look forward to as well.

        And Ethan, that sweet little boy with such a beaming smile…I never knew him yet I find it heartbreaking that a child would go through so much yet have the loving care and attention, all that his parents could muster to make every day of his precious life so special.

        Someone once said “ours is not to ask the reasons why…” The more I see from your own accounting and so many other wonderful individuals here and elsewhere who have experienced such pain, the more I realize that we are not alone in all of this. Call the internet what one will, regardless of its virtual and often surreal personifications, we still find no truer sense of reality when it comes to the human experience. I value that experience far beyond what I can possibly reflect upon in the here and now.

        We have come to know that everything in life happens for a reason. There are not enough words, not enough tears, not enough silence between each line on these pages to adequately address what we go through in life…nonetheless there remains great purpose and for all of that we continue to write, to laugh, to cry.

        …don’t ever apologize for time taken on this journey…it has far less relevance than all that we share.

        Hugs and blessings always,

        Don

  7. Pingback: Fasting for Andrea | Segullah

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