Remembering Henry's Laugh

with Jessica Kelley

Jessica, what is your loss story?

Nine days before Christmas, my 4-year-old son took his last breath. His life ended due to a brain tumor that was discovered less than three months prior. That was in 2012. But little Henry’s story starts well before that.

I married my husband, Ian, in 2000. Though I’d always longed to be a mother, we put off having children for eight years. We just wanted the timing to be perfect. We wanted to be financially ready and to have Ian settled in his career. I wanted to stay home and savor every second of being a mom. Finally, on July 15, 2008, Ian and I had our first baby, Henry Joseph Kelley. That’s when I realized that some of those seconds would be hard!

Some of those moments were messy and exhausting, but so many were beautiful beyond words. Henry’s bright-blue eyes and contagious laugh won over the hearts of everyone he met. Industrious and intelligent, affectionate and gentle, Henry taught us the incredible depths of parental love.

In 2010 Henry met his new best friend when our daughter Miriam was born. For the next few years, our lives were chaotic but fun. Henry and Miri taught us all about patience, self-sacrifice, and the joys of watching little ones explore their world.

In the summer of 2012, Henry began experiencing a cluster of symptoms such as trembling, loss of appetite, and sleeplessness that gradually intensified and ultimately landed us in the emergency room of a children’s hospital.

Doctors found a massive brain tumor and Henry underwent a 6-hour tumor-resection surgery just days later. A couple of weeks into our hospital stay, the diagnosis of his aggressive, malignant tumor came in. He had a rare form of cancer, a supratentorial PNET tumor in his frontal lobe.

We learned that with even the most aggressive, experimental treatments, the survival rate was very low and the treatment process grueling. So, after extensive prayer, research, and discussion, we felt peace with only one agonizing option. We brought Henry home with hospice care.

He spent the next two months surrounded by his family and friends, sleeping at night in Mommy and Daddy’s big bed, and having as many local adventures as his body would accommodate.

On December 16th, 2012, Henry passed away.

What do you want everyone to remember about Henry?

I’d like people to remember two things about Henry – the first is his laugh. I lived for that laugh. When Henry laughed, every cell in his body participated. He’d throw his head back, burst into a massive smile, and cackle from his gut. Waves of joy would emanate from his delighted little self and flood the atmosphere. His laugh was positively magnetic. It captured the attention of everyone around him, family and strangers alike. Hundreds of people laughed with Henry over the years, including strangers in line at the Post Office and passing shoppers at the grocery store. His laugh spread joy everywhere we went. No one could be sad around little Henry’s mighty laugh.

I’d also like people to know that Henry was an enormous stockpile of potential. I often saw “Future Henry” vividly.

When he started music school – I saw the concert pianist. When he preferred listening to opera singer Andrea Bocelli instead of watching cartoons – I saw the brilliant vocalist.

When he would build a city in his room, stacking random objects just so – I saw the city planner. When he demanded to know where the water went when it went down the drain and watched several videos on the water cycle – I saw the scientist. When he drew a schematic of a wastewater treatment system with markers and computer paper – I saw the engineer.

When he was gleefully surrounded by splashes of paint, ink, glitter, glue, and beads – I saw the artist. When he took thousands of photographs with my iPhone, and eventually his own camera – I saw the photographer.

When he’d play with Grandpa at the children’s museum, tirelessly manipulating levies and roadways for plastic balls – I saw the operations manager. When he went “exploring” with his daddy outside, and came home with nature’s treasures – I saw the archeologist. When his sharp mind and gentle touch met his little sister – I saw the pediatrician.

When he went silent and wide-eyed when our pretty neighbor came by – I saw flashes of the appreciative husband. When he playfully nicknamed his plump baby cousin “Baby Katato” (after Mr. Potato Head) – I saw the tender father and grandfather.

When his arms were spread wide and his heart overflowing with love – I saw the pastor, the counselor, and the friend. When we snuggled together and he finished my sentences, helping me read the books we’d enjoyed a thousand times – I saw the son who would help care for his mother in her old age, patiently reading to his fragile old friend.

I saw a thousand possible futures for my son. He was fearfully and wonderfully made in the image of God, and his potential was limitless.

What impact do you want to leave on the world?

I want to invite people to wrestle with their picture of God, especially before tragedy strikes. About two years before Henry’s diagnosis, I began re-examining my assumptions about God’s character, and particularly his role in radical suffering. As a result of this wrestling, I underwent a major faith transformation, which has proved invaluable as I continue to process Henry’s loss.

I now boldly share the testimony of my faith transformation in writing and speaking engagements. I do not share to pressure anyone to forsake their conclusions about God’s role in pain, but simply to present an explanation that I believe was shared by Jesus, the New Testament authors, and the Early Church, though it has not been predominant since the fifth century.

I firmly believe in the respectful sharing of ideas, because one never knows when any particular option, or simply the permission to wrestle with another viewpoint will prove tremendously freeing to someone. In my case, receiving this beautiful understanding of God’s character, and his role in radical suffering changed everything in my life, including and ultimately, how I dealt with my little boy’s death.

My monumental shift can be summed up in three points:
1 – God is love (1 Jn 4:8, 16), a love defined by the sacrifice of the cross (1 Jn 3:16). Jesus Christ was the exact representation of God’s loving essence (Heb 1:3), and his love was most poignantly displayed on Calvary, when he gave his life for us.
2 – Scripture as a whole, and particularly the New Testament, does not support my old belief that everything happens according to a mysterious blueprint of God’s design.
3 – When tragedy strikes, I can agree with the words of Jesus in Matthew 13:28 and proclaim “An enemy has done this.” God is at war with a real adversary who seeks to steal, kill, and destroy. In the end, God will win.
 
What lessons could people learn from your life?

Passionate faith is possible even in the wake of devastating trauma. I used to wonder if I could love God, or passionately proclaim his loving character, in the event my worst fears came true. I worried about this because I assumed that God was controlling everything. I thought life unfolded according to God’s meticulous, divine plan – even when cancer cells multiplied and precious four-year-olds with mighty laughs took their last breaths.

Yet regardless of how harsh it sometimes seemed, my belief that God exercised unilateral control over the world once brought me great security. It was not something I challenged lightly. But I’m so glad that I did.

The security I used to receive from believing that God was controlling everything now pales in comparison to the joy I experience. My joy springs from the knowledge that God is actively battling injustice, disease, and death alongside us, just as Jesus did in his ministry. I now understand that God’s heart is trustworthy and his power is demonstrated through perfect, self-sacrificial love. This drives me to passionately receive and share God’s love despite my devastating loss.

My security no longer rests in the belief that God is controlling the now, but rather that He is creatively and wisely leading those who receive and reflect his love towards his desired end – an eternity of freely-chosen love. In my experience, this understanding completely redefines safety and security, and offers passionate faith, no matter the circumstance.