by Rachel Campbell

Grief is a never sought-after but inevitable part of life, a reaction to death which visits us all at some time in our life. C.S. Lewis, in his book A Grief Observed delves into the depths of his personal sorrow. It is in this book that we see evidence of Lewis’ raw, unremitting grief.

There is another grief, a lesser grief maybe, but it is real and unrelenting nonetheless. It is a state of chronic sorrow, born, not from death in its usual sense, but through the loss of a previous life, or a life that was hoped for. Unlike true grief it is non-finite and erupts from a child’s diagnosis, whether at birth or at some later point. Overwhelming feelings of loss trigger sorrow for parents. Though these feelings may diminish over time, they are reignited by any further traumas which are common when raising a child, or children, with additional needs. Chronic sorrow steals joy, reducing life to mere existence for a prolonged period of time. This is our experience of living.

We have three children. As little ones they were lively, not good sleepers, but funny, happy and such blessings. Days were carefree and child-focused, my previous teaching career forgotten in a blur of halcyon, exhausting happiness.

Those days died on June 4^th 2009. For several months I had been concerned for my son’s health blood tests had yielded no cause for my worries, and I began to think that it was ‘just me’.

My parents accompanied us on a week’s coastal vacation. The unusually hot days prevented us walking barefoot on the sand, and water bottles were filled and emptied. What I hadn’t realized was that my son was consuming most of the water.

Our son’s 9th birthday fell on the Monday of our vacation, but he was too unwell to eat his celebratory meal. By Wednesday evening he was vomiting, and on Thursday morning his labored breathing led to an ambulance blue lighting us to hospital. He was placed in a medically induced coma, pajamas shredded from his emaciated body, tubes inserted and his eyes taped shut. Three teams of medics toiled to save his life and we were handed the verdict of a diagnosis of Type 1 Diabetes.  

As we sat by his silent form, I began to hope that he would recover quickly. A retrieval team arrived from a specialist children’s hospital. When the doctor spoke to us his words brought renewed horror. Our son’s life hung by a thread and we were told that if he survived it was probable that he would have lasting brain damage. I felt like a spectator in a made-for-TV drama, seeming to detach from my own body. Then I crashed back to the gut-wrenching reality of what was being said.

As preparations were made to take him to the specialist hospital, we sought advice on whether we should take our little girls to say goodbye, possibly forever. Our six-year-old walked past medical equipment, and tenderly kissed her brother. My parents also bravely kissed him goodbye, holding back a torrent of emotions in order to support us. The consultant risked her job by saying that she would pray for us.

Then the moment came when the ambulance doors closed and I relinquished my son’s life to the care of strangers. As his Mum there was nothing more that I could do, and he was taken from us. We followed in our car, with our younger daughter chattering away, oblivious to the gravity of the situation and insisting on happy music which we have been unable to listen to since. How my husband drove those two hours that day, I will never know!

Upon arrival at the children’s hospital, our son received a brain scan which showed no impairment. When brought out of the sedation he was soon smiling, and even joking with the nurses. On the surface our story seems to have a happy ending bur the reality is more complex.

Thrust immediately into the role of carers, there was no opportunity to adjust to the traumatic diagnosis. In those early days, there was an overwhelming amount to learn before we could bring him home, a new language and routine, and most vital of all, life-sustaining insulin to administer. Every single day since then, Type 1 Diabetes has exacted a variable revenge on our son’s body, and yet each day has been spent relentlessly fighting the same battle.

We have lived nearly 10 years with the chronic sorrow of Type 1. My career, happily put on hold when my babies were born, has never resumed. Instead I have undertaken menial, part-time employment which pays little but gives the flexibility to attend countless hospital appointments. My 40s have given way to my 50s with what feels like a lost decade.

I have lived with chronic sleep deprivation, many nights spent on my son’s floor, alarms set hourly. I have endured the highest level of anxiety with my mind reacting to events with the worse possible case scenario. I have become a warrior mum, fighting for improved care. I have sacrificed the routine needs of our girls for the acute needs of our son. I have made good friends and seen existing friendships deepen, but at the same time, there are those I considered life-long friends who abandoned us. As a family, we craved a pastoral care that never came.

Hardest of all, I have watched my firstborn fight a daily hidden battle, not existing on a level playing field. Others have claimed the awards and academic results that would have been his in the life we never lived. I have seen him excluded from sleepovers and parties because his friends’ parents were too scared to host him. He has succumbed to mental and physical fatigue in his teenage years when he should have grown in independence.

Yet, as mother and son, we are closer than we would have been without his condition. I am proud to be the parent of a son who has achieved against the odds, and is now studying at university. I have grown a reliance on God that I don’t think that I would have had if I’d lived a comfortable life, and I have grown to trust my Father more deeply.

Ours is a chronic, hidden sorrow. A non-finite grief, unobserved by most, that I would cast off in an instant, but would never exchange for the death that nearly was.