Sick Children

Jan Burn tells how her life was changed for ever when her seven year old son was diagnosed with cancer; and of how she struggled to cope in a situation where there seemed to be surprisingly few sources of advice and help.

This article was first published in the Spring 2006 issue of Chrism. The author's profile below is from the same date

Jan Burn is a mother of three—two girls, Katie and Hannah, and a son, David. She works full time as a pastor of Kingfisher Church, an inner city church, situated in Gloucester. She has recently completed a degree course in Theology with The Open Theological College. Jan’s major role as a pastor on the staff of Kingfisher Church is community development and outreach, and as part of that she runs ‘Parenting’ courses and ‘Drug-proofing your Kids’ courses at a growing number of schools in the city. She is married to James, who is the Senior Pastor of Kingfisher, the church that they began together in 1993. She has recently had her first book, ‘I’m Still Standing’ published by BRF. In it she shares some of her experiences as the mother of a child with a life-threatening illness, and it is designed to help others in similar situations.

© Guild of St Raphael

When your Child is Ill . . .

I remember very clearly the moment my son was born. The doctor, after having completed all the usual checks, presented him to me, pronouncing that I had given birth to a ‘perfectly healthy’ baby boy. After nine months of anxious waiting, I was being given the news that all new mothers long to hear: my child was ‘perfect’. Relief flooded over me and I gave myself permission to imagine a future with my son.

I imagined my son’s first day at school; the birthday parities I would organise for him. I wondered what it would be like to see him grow into a young man. What career would he choose? Would he marry? I decided then and there that, if he were to marry, I would be the perfect Mother in law. Definitely not interfering, but there on hand to give wise counsel for which my daughter in law would be so grateful. I wondered . . . would my son have children of his own? Would someday I be gazing down in the same way on a baby who was my grandchild? Now my son had been officially pronounced ‘perfect’, it seemed that it was legitimate to dream.

My life changed for ever

My son continued to be ‘perfectly healthy’ until the age of seven, when a routine scan for a suspected grumbling appendix turned out to be something much more sinister. The image on the screen of the tumour on my son’s kidney remains clearly etched on my mind’s eye to this day. At that moment I was thrust into a world that, previously, I hardly knew existed, much less believed would ever affect my family. This time a doctor handed me my son but the words were different. The beautiful sounding words ‘perfectly healthy’, were now being replaced with ugly words like ‘malignant’ and ‘oncology’ and with the sound of those words I knew my life had changed forever. Everything seemed different. I felt different. Now as I gazed down at my son, a new terrifying sense of dread had taken the place of the dreams. I felt as if the young mum who had walked into that hospital with such naive optimism had gone forever. I desperately wanted to get her back. Even more, I desperately wanted to scoop up my son in my arms, take him home and pretend none of this had happened. I wanted to turn the clock back to yesterday and stay there. Of course I was powerless to do any of those things and I knew that somehow I had to begin to come to terms with my ‘new life’.

However, I had absolutely no idea of how to address the issues that now presented me in my new role as ‘the mother of a child with a life threatening illness’. The responsibility felt totally overwhelming and I found myself wanting someone else to take the weight from my shoulders. I just wanted to be the child again. At the very least I wanted someone to hear my cry and tell me what to do. I felt lonelier than I had ever done in my life. Of course any sort of suffering is isolating, since no one can know exactly how another person feels. In my experience, however, through my son’s illness and talking to other parents in similar situations, this loneliness seemed to be made even more acute by the general lack of available resources. There are many wonderful books and organisations that exist to help bereaved parents and I thank God for them—they do a fantastic job. There are also ever-increasing resources available on general parenting. Even so, very little help seems available to parents, who, day by day, are not only called to face and live with the fear, uncertainty and stress that the life-threatening illness of their child brings, but who, within such a unique situation, are desperately seeking to answer the question ‘what do I do?’ Or perhaps more importantly, simply want their cries to be heard.

Unrealistic Expectations - of the medical profession

In the apparent absence of advice to the contrary, I began the journey in my ‘new life’ putting rather unrealistic expectations on three main sources, the first being the medical profession. I have observed that many parents who have a child with a life threatening illness tend to do this. There are, after all, few situations in life, guaranteed to make us feel more powerless than to be facing the possible death of our own child. As parents we see our role as that of protecting our children. We are used to being the ones that can make things better for them. If they fall and graze their knee we can ‘kiss it better’ or put ‘special cream’ on it. It they are unhappy at school we can go and talk to their teacher. Consequently, the reality of being unable to protect our child from much of the physical and emotional pain that their illness entails is extremely difficult to come to terms with. Like a drowning man grasping for something to hold, we, as parents, tend to cling desperately to the hand of the medics. We want them to tell us what to do to make it all go away. We expect them to have all the answers, cures, miraculous new discoveries of science at their fingertips. They are after all, the ‘professionals’. I soon realised, however, the limitations of what they could realistically give. For example, doctors delivered the diagnosis of cancer but it was my husband and I that had to try to communicate the implications of that diagnosis in ways that would be meaningful to all three of our children. Doctors told me that my son needed immediate treatment, but it was me that had to try and arrange immediate long-term care for our other children. Doctors prescribed the medication to ease my son’s discomfort, but it was my job to get my son to take it. Doctors gave my son a hospital bed, but it was my job to try to get him to stay in it. Doctors gave my son a prognosis but it was my job to try to find some hope for the future and live in the light of it. In addition, doctors, however well-qualified or well intentioned, are only human and mistakes are made. Some major mistakes were made by medics during my son’s treatment, which, under normal circumstances, would have been hard to come to terms with. These mistakes were made much more difficult to accept and forgive because of my unrealistic expectations.

Unrealistic Expectations - my own parenting methods

The second source of my unrealistic expectations concerned my previous parenting methods. Before my son was diagnosed with cancer, I already had nine years of parenting experience. I had read just about every book on the subject of parenting and although we were not by any means a perfect family, I prided myself on having a strong relationship with all my children. There were well established boundaries and good routines. Even so. 1 was totally unprepared for just how difficult the task of parenting under these new circumstances proved to be. Suddenly, it felt as if I didn't have the right tools for the job anymore. Many of my old tried and tested methods just didn’t seem to work in the same way. It felt rather like trying to turn a new lock with an old key. The keyhole looked the same but somehow, however hard I tried to open it with the key I had in my hand, the door remained closed to me. My son’s decision almost at the start of his illness not to take his medication was an example of this. He even stopped eating bananas, which he loved, when a doctor told him to eat them because he needed the potassium they contained, and he would rather be in pain, or sick, than take his medication. I was unused to seeing my previously compliant son being so stubborn. However, I felt reasonably confident that I knew how to talk him round. How wrong could 1 be? All the words that I knew would have previously convinced him to co-operate seemed to fall on deaf ears. I tried every key that I had—encouraging words, threats, bribery—to get him to open his mouth and swallow his medication. Nothing seemed to work anymore. As a parent I felt completely dis-empowered. It seemed I could no longer reach my son emotionally and felt guilty that I was letting him down. I discovered through the help of a play specialist, however, that trying to convince him to take the medication was making the situation worse. I began to appreciate how, in the course of his illness, so many choices had been taken away from him. He had to sleep in a hospital bed and suffer the humiliation of doctors prodding and poking him. He had to have invasive surgery and so on. None of these things could he do anything about. He could, however, choose not to open his mouth and swallow his medication. Fortunately for us all, David’s oral medication (he had his chemotherapy intravenously) was prescribed to ease his discomfort rather than treat his condition. David’s decision to fight this particular battle was not so much an act of disobedience, as the need to make choices, to have options. I had not really understood the depths of my son’s own sense of powerlessness and realised that as a parent I had to acquire a new tool for the job of helping him cope. This involved the painful process of learning to allow my son the freedom to make far more mature choices than I was used to, or indeed would expect a ‘normal’ seven year old to have to make.

Over many years of parenting a child with a life threatening illness, I have discovered that there are many new tools that are needed to be able to be a parent wisely under such circumstances. I realised that I needed a new tool to cope with such issues as the extraordinary amount of guilt that I felt; how to live with a new sense of isolation and loneliness; how to prevent sibling rivalry and give his sisters the childhood they deserved when life revolves around their sick brother; how to listen when our children express sometimes heartrending depths of fear and anxiety; how to build a sense of security by establishing family traditions when, due to illness, plans so often have to be cancelled. Other issues crowded, such as how to cope with other people’s well meaning advice; how to have hope for the future whilst living with such uncertainty; how to have any hope; how to still stand at the end of yet another physically and emotionally demanding and exhausting day.

Of course, I would not presume to have all the keys, all the answers. I am not even sure I know all the questions. To be honest, after all my years of experience, I can still be taken by surprise by a situation, conversation or event that brings home to me afresh the way my son’s illness has affected our family unit. My desire however, is simply to highlight and explore some of the unique challenges we, as parents in this situation, may face.

Unrealistic Expectations - of God

The third source of my unrealistic expectations concerned my relationship with God. Any well-rehearsed theology of suffering I once possessed no longer seemed anywhere near adequate to explain the depths of pain that my family and I were experiencing. God’s ways suddenly seemed a total mystery to me. It is not that I believe that God caused my son’s cancer, but that I found it hard to understand how, with all the power of the universe at his disposal, he seemed reluctant to heal my son. I found God’s apparent inactivity especially hard to comprehend when my son, having been free from cancer for two and a half years, suddenly relapsed. I remember clearly seeing the pain in my son’s eyes as my husband and I told him that his cancer had returned and my absolutely heartrending feeling later that day when he looked up at me and asked, ‘Why me. Mummy, why me?’ I felt I was failing him because I had absolutely no answer to his question. At least no answer that made any sense to me. I found myself simply saying, ‘I don’t know why. But I do know that if I could take the tumour out of you and put it in me I would’. I felt in the circumstances, the answer I had given him was woefully inadequate and yet amazingly my son looked up at me, smiled, and replied, ‘That’s just what Daddy said’, and never again asked the question, ‘Why me?’ It seemed that it was enough for him to know that we, his parents, would gladly take his place. He trusted us. As I have reflected on this over the years, I realise how much we, as parents, (or spouses, or pastors, or friends) often feel that our job is to have all the answers, when often the most profoundly healing thing we can offer someone is the willingness to suffer with them. My unrealistic expectation had primarily been in my assumption that a deeper relationship with my Heavenly Father depended upon receiving more answers to my questions. It seemed that I had to learn what my son at the age of ten intuitively knew, that sometimes answers are just not enough.

The more I thought about my son’s response, the more I realised that when I asked my Heavenly Father the same question ‘Why me?’ ‘Why my son?’, he has already demonstrated the lengths to which he would go to show his love. We have a Heavenly Father who gladly did take all the bad things from us and placed them on his son so that we may be free. I realised for myself in a new way that sometimes the pursuit of answers is not enough. As Christians, God often calls us to take the ‘child’s way home’, and simply trust him.

A ‘roller coaster ride’

The past ten years have certainly been a ‘roller coaster ride’. As a family we have experienced tremendous highs and heartbreaking lows, through which we have learned so much about God’s love and faithfulness. The closeness of our family unit has grown immeasurably and we have learned to value the special times together. So would I change things? I do not hesitate to answer, in a heartbeat—yes! You see, I’m not one of those super-spiritual people who endure suffering patiently or quietly. I do not want my character to be formed during the hard times. I want God to teach me another way, a less painful way. For whatever reason, though, the path involving childhood cancer is the path along which God allowed my family and me to travel. However, in my experience, many of us who are called to parent under such adverse circumstances find the journey much more difficult as a result of the apparent lack of signposts along the way. My desire is that this begins to change and the vital role of parenting is highlighted as a central part of an holistic approach to healing for the whole family experiencing such trauma.

© Guild of St Raphael