Bucket List Blues

June 25, 2021

               My roller coaster isn’t merely highs and lows, twists and turns, or as Calvin calls them “loopty loops”, but I have merciful reprieves around some of the more treacherous swings.  These “plateaus” as I call them offer me a resolute amount of time where I’m simply meandering through my daily life, feeling neither high nor low, just a pleasant ambivalence about where the next turn may lead.  I’ve grown to be very grateful for these times.  They tend to offer me the most amount of peace, the most freedom from my grief, and opportunity to camouflage myself into the world around me.  Nothing quite wrecks the solace of my plateaus quite like reality crashing in. 

               Last week, while Elena was at the Jackson Center camp I took advantage of having one-on-one time with my boys, something that very rarely happens.  I promised them “surprises” each day, things that were out of the ordinary for our crew, like a few hours at a trampoline park, going out to lunch, checking out a new waterpark and a trip to the bowling alley.  All very “summer bucket list” items.  The difference being, these were very special outings for my boys, because these aren’t things we can generally do, not when I have all three kiddos.  Despite the lovely memories, laughs (and meltdowns courtesy of Turner) and fun we had, I was bit by a nagging sense of sadness at the end of it all.  Not just because Elena and Chad weren’t there, but because I couldn’t believe how normal these activities felt.  Even more so, because how easy they were. 

               Que the perspective ping.  It occurred to me, several times throughout the week, that nothing we were doing was actually super special by my peer standards.  They were all things moms do with their kids during those I-can’t-take-one-more-I’m-bored-comment-or-I’ll-scream-moments.  Each place was full of moms with kids of all ages making memories.  What nagged at me was that it felt, at times, like I was privy to what everyone else’s summer must feel like. I stepped into normalcy where I’m camouflaged into everyone else.  I felt what it was like to not be noticed, where my crew isn’t the circus. We simply went and did. 

               My life is not this easy.  Outings take a great deal of planning and packing and anxiety Emmalee pretending to be chill/cool Emmalee.  Is it something Elena can do?  Will she enjoy it? Is it ADA?  How accessible is it if it is ADA?  Is it something where I can be with Elena AND be with the boys, seeing that Elena cannot be left unattended?  Will I need to change her there?  Is it over a meal?  If so, I’ll have to pack her lunch and her meds.  Which wheelchair or stroller will work best there?  What’s parking like?  Can I get close enough so we won’t have to walk far?  These are just a sampling of the one million things that have to be mentally checked off to venture out “memory making” or going out to eat or filling our days with activities.  The ease of those few days with Calvin and Turner felt like a vacation from the complexities I’m typically faced with, but yet at the same time, pricked and prodded and poked me with a TBD onset of emotions that didn’t quite feel right and I couldn’t articulate.  Was it grief?  Was it sadness?  Anger?  Longing?  Jealousy? 

               This week, those lingering, stewing emotions turned to straight-up anger.  For the millionth time, I left a doctor appointment blinking away the tears, weighing decisions between a bad choice and a less bad choice, forcing me to face things that are usually placed in a “do not think about” box in my head.  A series of things seemed to compound themselves to remind me that regardless of whatever respite I can receive from the usual complexities, my life is different and will always be so.  My response, much like when I give Turner more chocolate milk than Calvin, is THIS IS NOT FAIR.  These choices, these decisions, these differences, these pains, these circumstances aren’t fair.  I want to be the insignificant Mom at the waterpark with her kids that no one notices.  I want to be able to leave my kids with their grandparents and not have to worry about my aging parents lifting their granddaughter.  I want to be the “Summer Bucket List” Mom that carts her kids around from activity to activity.  I want to be the Mom that decides on a whim to whisk everyone off for pizza at their favorite restaurant.  I want to be the Mom that takes her kids on adventurous vacations to the National Parks or to the mountains to hike, ski and explore.  I want to enjoy these moments with my boys without feeling the guilt that we aren’t all together, that I want to blend in.  I want to be like everyone else.  I don’t want it to be so hard.  But I’m not.  And it isn’t. 

               Like usual, it’s taken a few days, a few cries, a few moments feeling sorry for myself to shed most the heartache.  I don’t feel the gratitude yet.  The perspective remains foggy.  For the most part, it still feels raw and unresolved, so that’s how I will leave it.  No tidy bow at the end of this one today, folks.  Reality and the weight of what I must carry in this life feels heavier and more visible, and I carry it less graciously some days, weeks more than others.  The gratitude and perspective will come as they always do but not before I sit in the hardship for a bit.  Even as I write this, the recognition that we all are carrying a burden, and all feel a sense of life’s inevitable and constant injustice resonates in my heart. I know I’m not the only one.  Sometimes when I just sit in the discomfort, the unfairness of it all, letting the ugly and the unresolved out, it creates a momentum of empathy and grace for me in how I feel about my own life, but it also helps me to look outside of myself and acknowledge the hardship of us all. I’ll tie a tidy bow on this yet, just not today.

  1. Rebecca Miller says:

    No one except you, Chad, and God knows or understands the complexity of each day you must face. We can only pray for your family, tell you we care, and hug you from afar. My only hope is that you know, one day Elena will walk the streets of Gold with no help, waving and smiling at everyone who loves her and believes in our God as our Savior! Maybe, just a little maybe, that will give you a moment of comfort. Love and hugs!

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This is Elena. Our Light. You can see all the goodness and joy that shines from those deep blue eyes. She loves sneezes, yawns, industrial toilet flushes, automatic paper towel dispensers and The Star Spangled Banner. Music is her everything, specifically Moana, Frozen (really all Disney), Queen & Taylor Swift. Nothing makes her squeal quite like swimming, fast boat rides and her two brothers in trouble. In addition to her megawatt smile, Elena reminds us to cherish the smallest of victories, to live in the present, and to daily dwell in a posture of gratitude for every breath and every blessing.  

More About Our Story

I’m Emmalee, an ordinary gal born and raised in the Heartland. Wife to Chad, and Mom to Elena, Calvin & Turner, I spend most my days ridin’ dirty (literally so much trash) in my minivan carting kids to and fro. When I’m not being a Momager, I excel at self-care, cooking gourmet meals my kids won’t eat and deep-diving all the feelings. Most days, my attitude is gratitude, just taking life one step at a time.

Emmalee & Elena

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