The Struggle is Real

May 16, 2023

Hope is a merciful thread that helps you to hold on in the midst of uncertainty until you can face the truth.  So, what do you do when the hope dries up?  When that merciful thread snaps and the truth stares you in the face?    

Hope has been a literal life force for me, specifically in the aftermath of Elena’s injury, keeping me going one foot in front of the other FOR YEARS.  The unknowns in Elena’s recovery, of a different future for her, of her healing, independence, of her physical ability have been open-ended endless possibility, even with the knowledge of the challenges of her broken little body.  Hope has driven us to do all the therapies, find all the doctors, research opportunities, opinions to set her upon the best trajectory we could. Despite whatever daily challenges we faced, there was hope that it would improve, resolve, we would overcome.  I have yet to discern whether God that deemed my heart ready for this truth or if this is just the natural progression of life and its pursuant wisdom, but that familiar thread of hope has dissolved into a reality of hard truths.   The wave of hope I have ridden for a decade has crested. 

Having the benefit of hindsight, this shift has been slowly coming to fruition for the last couple of years as slowly, our goals for Elena began to change.  We began to work more on preservation and retention than growth and achievement.  Things that used to grieve me so, like her g-tube, walking, even communication, I began to fully accept as they were.  Our decision making for her began to require giving something up in the never-relenting quest for quality of life.  With age and size, came mounting challenges that will continue to get more difficult.  Turns out, gravity wreaks havoc on all our bodies, even if you’re only 11.  I began to realize we no longer have the privilege of having good options in regards to Elena’s challenges.  Making do with bad and worse has become routine for us.   Instead of the hope of overcoming and achieving, we simply hope to endure.  Instead of a solution, it’s a sacrifice.  Instead of hope, it’s reality.     

I have been grieving this shift from hope to reality over the last several months.  The word grief makes it seem more delicate than it felt.  It clobbered me, like running at a sprint directly into a concrete wall.  The process of acknowledging what lies ahead, the permanence of our circumstances and the subsequent grief has been overwhelming.  I have been so used to grieving the life and abilities Elena lost, what has caught me off guard has been the loss of hoping that our circumstances would change, the understanding that our prayers for Elena’s recovery will not be granted, that what is will forever be. 

It’s always a struggle to share my struggle.  I do my best to balance between doom-and-gloom and truth.  In many ways, life is no more relenting than it was the day I received the call telling me Elena was being rushed to the hospital.  Every moment of every day for nearly twelve years has been a delicate balance of joy and grief, hope and despair.  I have been self-conscious about sharing because, at what point, do people move on from your story?  At what point does a never-ending struggle become too much for everyone else?  Yes, there is redemption and goodness in our story, but there is also no happy ending.  It is forever, life-long struggle for Elena, for Chad and for me.  It’s exhausting to consider.  It’s exhausting to write about.  And it, honestly, it is exhausting to discern what to share and what to keep private. How do I keep it real without sounding like I am constantly feeling sorry for myself? How do I share the good with the bad? So often I tell myself to suck it up and move on, life is supposed to be hard and it’s hard for everyone, there are people who face much bigger obstacles than me.  But I’ve also found that the simple act of raising your hand to say, “this is a struggle”, helps with all our struggle.  Even with all I have shared about our journey, and all I want to share about our journey, so much is held back because I’m afraid that people can’t handle the raw, full truth that we live.  The truth is we are in a hard place, in the midst of a life-long hard place, like running a marathon through a swamp. 

I know life is a continual journey of learning and overcoming and being slammed back to the beginning again.  And though right now, (note my current location at the “being slammed back to the beginning again”) it feels like the hope I had become so accustomed to is gone, I know, because of my faith, I am never truly without hope.  I know where my strength comes from. This past weekend at church, this verse was referenced and gosh, how I could relate (though to be fair, I’ve asked a bit more than three times!)

2 Corinthians 12:8-10  Three times I begged the Lord to take it away.  Each time he said, “My grace is sufficient for you, for my power is made perfect in weakness.”  Therefore I will boast all the more gladly about my weaknesses, so that’s Christ’s power may rest on me.  That is why, for Christ’s sake, I am content with weaknesses, insults, hardships, persecutions, and difficulties.  For when I am weak, then I am strong.    

  1. The raw unfarnished truth is hard for us to read but yet, oh so needed. The struggles you, Chad, and especially, Elena, endure are hard for us to comprehend and understand but the reality of your words helps us to see that even though God doesn’t always answer our prayer requests, He is still there to lift us up. You are an inspiration to all of us, not because that is why you write but because it is a truth. We need to be hit with your reality so we can be more God like in our treatment of others, no matter the circumstances. Thank you for Sharing and for keeping us mindful of others struggles each and everyday. May God bless you with the Grace, Strength, and Peace to face each day!

  2. Sherry Heagy says:

    An outsider has no idea of the difficulties you and your family are enduring. The only thing we can do is pray for your strength and peace. We never know of God’s plans for us, but we have to have faith that He will get us thru to where He wants us to be. Thank you for sharing your story. And thank you for reminding ALL of us to count our many blessings. May God continue to hold you and your family in the palm of His hand.

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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

Meet The Gals