Wrestling with God

Anniversaries can be funny, can’t they? Sometimes they are met with joy and happiness celebrated with remembering special memories, popping the cork on prosecco, and blowing up balloons; and other times it’s met with heartbreak, moments of silence, and tears.

For myself, the 30th of Sept 2020 will always be marked as one of the darkest days of my life…. The day Batten’s Disease walked into my life.

I remember it so clearly. It was a Wednesday, I had just completed a day at work (over Microsoft Teams), I had a text from Hayley to say that we had an appointment two hours later with the consultant paediatrician at Great Western Hospital to discuss my daughters recent blood tests. Whilst Hayley tried to be upbeat and reassure herself saying, “Well at least they now have some answers…”, in the pit of my stomach, deep down somewhere, I kind of expected it not to be good news. I mean, who has a consultant give you a call and make an appointment for a few hours later?

We tried to occupy our minds in the waiting room as other patients came and went, finally the consultant who called us appeared brandishing some paperwork and walked straight into a side room. All we heard was the receptionist telling the consultant, “Mr and Mrs Clarke are waiting for you. Do you have everything you need?” as they also proceeded to usher us into the same side room.

Suddenly the nervousness in the air became as tangible as the people in the room. There were four of us there, Hayley, myself, the consultant, and also the specialist epilepsy nurse. We sat down and all I can remember was holding Hayley’s hand tight as the consultant said, “I’m sorry to be the one to have to tell you this, but your daughter has Battens Disease.” We didn’t know what Battens Disease was, but we knew that the outlook wasn’t good. Without a second thought I verbalised the question that had plagued my mind for the past few hours, the one question that I feared most, “Would Addy have a shorted life expectancy? Would I be the one to bury my own child?” The consultant didn’t answer, but the specialist nurse simply closed her eyes and slowly nodded yes.

In that moment as tears flowed free and fast, shock gripped my body. In the space of a milli-second, my dreams shattered into a million pieces. My perfect daughter was facing something that I was helpless to stop. I held Hayley as the consultant described the journey that we would go on as a family, and the journey my daughter was forced upon. Within 20 minutes we had received a phone call from Great Ormond Street Hospital and told that we had an appointment with the UK’s specialist metabolic professional in less than 18 hours in London. We would discuss brain surgery, and a treatment that my (then aged) four-year-old daughter would receive fortnightly in order to prolong her life.

We returned home after the appointment in shock and disbelief, I walked through the door, and struggled to even look at Addy. How could it be? How could this simply gorgeous little girl I had so many dreams for, have this diagnosis? That night, we packed bags through the salty torrent that streamed down our faces, we held Addy close, and we did the very thing the consultant told us not to do…. we googled the condition.

That was the day that we started on a journey with Battens Disease (CLN2). At that time Addy was one of only 12 children in the UK to have the disease, 100 in the world, and no child in history with Addy’s variant had ever lived into teenage years.

Currently Batten’s disease has no cure, it doesn’t prejudice against those it affects, but it is always fatal. It’s the worst of childhood diseases that is virtually unknown; it steals the child’s ability to walk, talk, comprehend language, and their sight before it eventually takes the individual’s life.

As any good Christian should, I asked people to pray for physical healing. I mobilised friends and family, churches and strangers both locally and internationally to pray for her. I reached out to Christian’s who were in the public limelight to ask them to share amongst their prayer networks. For months people sent cards, cuddly toys, finances for travel, and prayer blankets for her. Church leaders came over to pray, there was more shepherd’s pie than a shepherd could eat in an entire lifetime, and my heart spent hours a day pleading with God to physically heal our daughter.

Over time as months passed, support dwindled, and prayers of physical healing were exchanged for prayers of comfort and asking God to simply be close, I began to wrestle with God. I became angry, sad, and there is nothing more demoralising than having what feels like your hope is dashed before you. Yet I decided to wrestle more. I fought with God, I yelled, I screamed, I turned my back, I turned back only to yell more at God, but I kept speaking with him.

In the story of Jacob (Gen 32), Jacob is famous for wrestling with an angel/God and saying, “I’m not letting go until you bless me.” In the moment, whilst it isn’t said, I imagine Jacob to be yelling at God. Pleading, crying through the sweat, pain, grit, and dirt. In the story, Jacob is wrestling with God because he doesn’t want his brother, Esau, to kill him for stealing his birth right. Cut back and God doesn’t seemingly grant Jacob’s request, He simply changes his name to Israel, which means “God Wrestler”. In this moment Jacob had been asking for one thing, and blessing came through the interaction with God. Jacob arrived at a point where the interaction with the living God was of greater value than the potential of whatever outcome lay ahead with Esau. This does NOT mean that it was easy, nor painless – not by any means. What it does mean though, is that God is definitely capable to bring blessing out of the hardest of times; he is willing to sit with us in the dirt; and he is more than able to deal with our wrestling (yelling, anger, and tears) whilst in pain.

I wonder what you’re dealing with today. Something that you’re wrestling with, something that you find unsatisfactory. Have you given up on God changing things, or have you decided to simply stick two fingers up at God? Whatever you do, don’t be afraid to face those hard times with God. He may not answer your prayers the way you want, but he is able to be the blessing you crave.

Today let’s pray for:

  • Those individuals who are facing the hardest of times head.
  • Pray for those bereaved parents who have lost children or face the real possibility of losing a child.
  • Pray for the siblings of those children who are recently bereaved or are seriously ill.
  • Us as we sit with those who are wrestling at the moment.
  • Our practical response to serving those who are struggling right now.

Written by Dave Clarke, Director for Swindon Youth for Christ