Stories always have a beginning… a middle… and an end.
The climax of a story is often riveting and what compels us to stay engaged, to see how the story will end.
The climax of my story, to date, has been in large part shaped by my Dad’s journey through a difficult and crippling brain diagnosis.
I’ll never forget the day when life as I knew it changed forever. In those moments, there were lots of questions and uncertainties. I was paralyzed by the unknowns and unable to contemplate the future, yet one thing I knew for sure—my world would never be the same.
Up to this point, my life had been pretty comfortable. I grew up in a solid family with strong values. Our home was filled with lots of love. Life was good and what one might consider "normal" … as “normal” as life can be, that is.
And then, in what seemed to be a split second, normalcy and everything that “normalcy” entailed; changed forever. Ahead would be a journey filled with un-chartered territories, rough terrains of fear, wild trust, deep love and eventually good-byes. The “normal” life that I had been living began to unravel right before me.
It was a day marked with grief as our families joined together to say good-bye to my Great Uncle Roy. Little did I know, this significant moment in time would mark the start of my own grief journey with my Dad and allow me to realize just how precious relationships are.
Standing side by side my tall, wide shouldered Dad, we sang “The Old Rugged Cross” from a shared hymnal, while together we grieved the loss of Roy. By the time we reached the third verse, I heard a faint moaning. I glanced around the sanctuary to determine where the sound was coming from and then up towards my Dad to see if he had heard it too. It was then I realized, the moaning sound was coming from him! I handed him my reading glasses, seeing how he wasn't wearing his own. He respectfully returned them, knowing his vision was not the concern. It was then that he went silent.
And time stood still…
That was the last time I heard my Dad sing. Soon it would be, the last time I heard his voice at all.
My Dad, the harmonizer of melodies … the one who kept my life “in tune” had lost the ability to sing… both physically and metaphorically.
That “faint moan” would eventually become a sounding alarm, informing us all that life as we knew it was changing.
Years passed, and Dad’s brain diagnosis ravaged his body. Over time his broad shoulders shrank. His muscles deteriorated. His hearing and ability to speak vanished … all right before our very eyes.
Dad lived 10 years after his initial diagnosis (3 years beyond expectancy). And day after day as he experienced continued loss, he changed and morphed before us.
We changed and morphed alongside him too. Not necessarily from a physical perspective (although grief did take its toll). It was more of a morphing and transformation of our souls.
What I thought I knew about life, I didn't. What I thought I understood about human nature, was deeply tested and tried. And most importantly, what I thought I knew about God was challenged, as I walked through a refiner’s fire.
It was a deep time of wrestling within my soul. I wrestled … we all wrestled with the unknown realities and uncertainties that were ahead …even my sweet Dad, wrestled.
Illness has a way of causing one to embrace the here and now. This season of life shook me to my very core. Each loss we encountered, incited impulses within me to reach out in vain less attempts to try and stop time … precious time that arguably, was slipping away too quickly.
It was as if I had been thrust into an unknown and invariable crevasse of change that caused me to dig deep into my faith and what I believed to be true about life. With each day, change became an unwelcomed friend that I longed would go away. It was a significant season and reflecting back now, I can see a definite line in the sand: My life before that fateful day and my life following that crisis moment.
My Dad eventually lost all ability to speak and to hear and spent the last few years of his life in silence. As he described it to my Mom once, it was as if he was driving down a dark street, and he could see only glimpses of life through dim lit windows of homes in the night's sky.
In this silence, his journey led to a place of aloneness. I have to imagine the nights he cried himself to sleep. And wonder, if he questioned how long the pain would last? If he pondered the purpose of his suffering? If he contemplated what the future held for him and for the family he loved? And the difficult deliberation of how to say goodbye to a life he wasn't yet ready to leave.
Through it all, I never saw him complain. Rather, I saw him dig deep into his faith. I witnessed the Lord present in his suffering with an indescribable peace that kept him going each day.
The Greek word: Apokaradokia is used twice in scripture in the New Testament and means: “to watch with one’s head outstretched and so to direct attention with intense expectation and earnest watching.” The literal translation means: “Stretching the head forward. Striving for what is ahead.”
I first learned of this word at my Dad’s funeral when my brother, Kevin encouraged us to be intentional in our focus in looking at the life that awaits us. “This life is just a bus stop,” he said in comparison to what the future holds; for those of us who believe.
For my Dad, he believed that this current life was not the end, but rather a stopping point on the way to eternity. The daily questions and hardships he faced served as a continual reminder of a greater need we have for a Savior … a reminder of the life we are promised if we follow Christ.
Grief is a funny thing. It causes you to look deep inside yourself and often there the choice is found to either give into fear and sadness, or to lay hold of what’s ahead, trusting this season of pain is only temporary.
Both in his living and in his death (August 2016) my Dad challenged me, when life is hard, to lean into these truths and promises.
During the last few years of his life, with no voice, his heart spoke louder than words. Desiring to communicate, he would often put his hands together in the shape of a heart to express to me how deeply he loved me. This memory has become an ongoing encouragement to continue on in "apokaradokia” and to intentionally focus on what is ahead, as I purpose to carry out his legacy of love.
Daniel’s Heart foundation was birthed out of a desire to see others experience hope amidst crisis. In my Dad’s disease the feeling of isolation was palpable. For him especially, but me as well. For most of his disease I didn’t know anyone else that was going through a similar situation and I didn’t quite understand how to live despite the loss we all were experiencing.
There were so many overwhelming levels of grief. I learned that grief begins the moment change starts to take place and intensifies as the disease or loss progresses. I have a desire for others to experience grief and those changes from a place of hope rather than despair, so the feelings of isolation are temporary.
It’s a powerful thing to realize in suffering that physical loss does not change who someone is at their core, and that while fighting to live each day, we can do so with a profound sense of hope and dignity.
My Dad’s willingness to keep fighting, despite the trials and pain spoke volumes to his character and have challenged me to live life with my head stretched forward, with unwavering yield and confident expectation for what lies ahead.
I earnestly anticipate what God has, I know this place, this life, isn’t the end. It’s merely a “bus stop” … a moment in time.
My Dad’s faith and his HOPE in Jesus led him to faithfully experience the goodness of God despite his circumstances. In his suffering, he became not only my hero, but a warrior… as he showed me how to live the “even if not” of what I expect or desire. To know deep in your soul that if God calls you to a tough season, He is still good. He remains faithful to you, and His promises.
Friend, what about you?
Are you sinking in grief from a diagnosis or longing for a conclusion to your story?
Are there changes that are out of your control?
Are you waiting for test results that have no answers?
Are you dreaming of what was and trying to figure out what is?
Are you teetering on that line trying to find a new “normal”?
I see you….
I have felt glimpses and experienced long seasons of similar things too. There is hope, friend. I'm reminded of this hope daily. It's in new life with each changing season...It’s in families, as they rally around loved ones to provide the best care possible and find a new normal too…It’s in the nurses who come without judgement to hold a hand and care for a wounded heart...It's in the breath I take each day that comes with appreciative recognition, rather than something taken for granted….Most powerfully, it is in my belief in God, the creator and sustainer of all things. The true-life giver.
It’s with this warrior fight, that I welcome you to join our stories, and our HEART FORCE. Together we can love others as they walk through crisis of their own.
The people who rally around this mission to bring hope and relief to families, such as ours, who need help and comfort in a time of need are the HEART FORCE behind Daniel’s Heart Foundation. Partnerships like yours shape the execution of who we help. By joining us, it’s as if you are holding your hands out in the shape of a heart to someone else to say, “I see you’re in crisis, and I see you're hurting. Let me love you this way.” To recognize the pain and hurt people are walking through, we can provide relief in practical ways, so they don’t feel alone in the battle. That recognition and effort to care is deep component to healing.
Our desire is to bring hope in the midst of dark seasons and to encourage others through difficult journeys. By believing in our mission and partnering with us, you become part of our #heartforce.
You may know someone who was living an otherwise healthy life who has faced physical disease, illness or trauma? Or maybe it’s you?
We can we be a point of change for those in this season. Let’s unite together to love others deeply.
It is with gratefulness, I extend this offer and with respect that I intend to carry on the legacy of my Dad’s love, who is worth a billion heart shapes to me and more!
Daniel’s Heart Foundation