Instead of a new year resolution, I started this year with a word I felt God placed on my heart to guide me: Abundance.
Deep down, I knew that even though my life was nearly perfect, I often missed the abundance God had for me in it.
I eagerly listed all the ways that I could have abundant life this year – trips to take, passions to pursue, and activities that could inject life and purpose in the mundane. I also knew that I needed to practice gratefulness for all the ways that God was blessing and moving in my life.
Armed with new resolve and intention, I sat with my family around the dinner table and forced myself to utter the words that I was so hesitant to say aloud, “I’m thankful we’re all healthy.”
As soon as the words left my lips, I felt the fear that what I just said would certainly mean we now had a target on our back.
Almost on cue, I woke up that next morning to my son throwing up.
“Really, God?” I thought, as my mind drifted back to the praise I had reluctantly shared the night before.
The day went on, and I was thankful to work from home and allow my son to rest and junk out on TV so I could get some much-needed work done. While it wasn’t ideal, I felt a bit proud of myself for making the best of the turn of events.
That’s when I got a call from a local number on my cell phone. I knew I was waiting on test results from my daughter’s genetic testing, and my heart raced as I accepted the call.
“Hello, this is Doctor Smith. Is now a good time to talk?”, said the voice on the other line. My son was complaining loudly he wanted more Gatorade, and I walked clear into the other room completely ignoring his request. “Yes, it is as good as any.”
I grabbed my paper and pen, as if they were my security blanket. Something about the doctor’s voice meant that he was about to tell me more information than I’d be able to digest or remember.
I fumbled as I wrote the words, “Emery Dreifuss Muscular Dystrophy“, struggling in my attempt to spell it. I listened as he explained how this was a rare form of muscular dystrophy that impacted muscles such as the calves, upper body, and heart. I wasn’t even sure what dystrophy really meant, so I wrote his explanation down, “progressive muscle weakness”.
We’d been on this journey for over a year, ever since my daughter wasn’t meeting gross motor milestones and a daycare teacher expressed concern about how often my daughter was falling. We’d met with tons of doctors, some who said she probably just had low muscle tone and brushed it off. We had her fully evaluated twice by physical therapists and had weekly physical therapy sessions to try to strengthen her muscles.
Where there were vague explanations before the call – this gave a name, a real explanation, the missing piece we were searching for.
But unlike many other diagnosis – this one came without a drug to reverse or slow down the progression. Our one “treatment” – physical therapy would also shift dramatically. Since her muscles wouldn’t naturally build back, strength building could actually do more harm than good. Suddenly our “improvement plan” for her motor development turned into a “maintenance plan”.
The doctor couldn’t comfort me with predictions, statistics, or data on what the future could look like. He patiently described how outcomes can look different and answered most of my questions with, “we will have to see.”
When I reached the end of the doctors answers, I hung up the phone and without pause went through the motions of tending to my son and taking a conference call.
Despite life-altering news, life kept going. Each day felt like a bad dream that I would eventually wake up from, my scribbled notes being the one physical proof this diagnosis was in fact real.
While work was a much-needed distraction to my grief, daily routines and weekends with my children would re-open the Pandora’s box of dreams I had for my daughter.
What will her life look like if she loses her ability to walk? What is her life expectancy if this impacts her heart? Would she decide against having children given the genetic pass-rate was 50%?
How was I supposed to feel God’s abundance in a time when a sense of continual loss was right in front of me?
I didn’t have a good answer. Unlike other trials I had experienced before, I couldn’t package this up neatly. My grief was constant. It followed me on my way to work, it visited me unexpectedly in times of great joy, and it continually whispered and reminded me, “your life will not look like you thought it would.”
While I didn’t know how I would find God’s abundance, I felt desperate to escape the constant downward spiral of my thoughts.
In the past, talking to people or writing would be my first resort to process my thoughts and work through them. This time, I was at a loss for words. Sharing with others often exposed the pain I was feeling. While many of my close friends offered me comfort, others offered me empty statements like “everything happens for a reason” or “sending positive vibes” that made me feel as if the path forward was easy: put on a positive perspective and look on the bright side!
I desperately wanted to do this, except I didn’t know how. Attempting to manufacture positive sentiment in myself was like applying a wet bandaid to a gaping wound – it simply would not hold.
With no words of my own, I opened my Bible to let its words wash over me. If God called me to abundant life, surely He wouldn’t leave me to figure it out all by myself.
In contrast to the empty hope I felt from the man-made expressions of comfort, these words were very different.
Instead of telling me to think on the bright side, these words didn’t sugar coat or take my struggles lightly. The words described this world as broken, pain as real, and sadness and despair as a common part of the human experience.
Yet, these descriptions of this current reality were nearly always contrasted with a larger reality. Looking to an eternal reality lifted me out of dwelling on my present struggles and made them appear temporary, small, and not worth comparing to the glory that lies ahead.
Unlike the advice of the world that says “you are enough” when you clearly know you are barely functioning- the words I found in scripture helped me admit that I would not be able to simply “wash my face” or “lean in” to rescue myself from my sorrow and fear.
In replace of this “pick yourself up by your bootstraps” or “think on the bright side” theology, I found rescue and relief in a Savior who wept for the brokenness I was feeling, who purposefully entered into suffering himself and with others, who sought out those who needed healing, who gave me what I needed most – saving from this life and a hope in the eternal.
I began to realize the deep flaw in trying to find abundance anywhere but Jesus.
Although I “knew” that everything in this life eventually fades away, I hadn’t realized I was seeking God’s abundance in his blessings rather than finding abundance in him alone. By putting my hope in these temporary things, my joy was fleeting – based on having enough positive outcomes exceed the negative ones. This works well for many of us, including myself, until it doesn’t.
Being only three months into a lifelong diagnosis means that I still wrestle with this daily. One look at an 18 month old effortlessly running can send me into a spiral of self pity. A trip to the park can be mingled with surprising joy and sadness. The journey to abundance often feels more like a battle or war that I’m fighting rather than coming naturally.
Yet, I’ve learned just how real the presence of Jesus is.
I’ve felt waves of joy wash over me as I release my fears and raise my hands in worship. I’ve cried happy tears as I read the promises for the future found repeatedly throughout Scripture. I’ve been moved and encouraged through sermons and song lyrics that replace my fear of the future with reminders of the hope, joy, and love found only in God. I’ve felt the warm sun and breeze on my face and felt deep down in my soul as if God isn’t leaving us alone in this journey.
Yes, the journey to abundance hasn’t at all looked like I thought it would. But with each wobbly, unsure step I take toward Jesus, I’m learning he never disappoints.