I faced the paediatrician and gave what I now know was a classic description of a baby with cerebral palsy. Then I added: ‘But I don’t think there’s anything wrong with her. She’s very behind in her development, but you’d expect that – she’s been seriously ill for 15 months’. Very gently, the doctor broke the news to me about the severity of Ellen’s condition.
Ellen, our second child, had been born more than 3 months premature, and breathing difficulties had caused brain damage. This left her with severe cerebral palsy affecting all four limbs, and autism, affecting her language and comprehension and her ability to interact socially.
Ellen’s respiratory tract had been damaged by long weeks on a ventilator. During her first 2 years she had pneumonia 24 times, and stopped breathing on average 6 or 8 times a day (and night).
We learned how to pinch her chest and flick her feet to shock her into taking a breath. Whenever this failed, it meant an emergency dash to hospital. It took two and a half hours to feed her, which had to be done 6 times a day – a total of 15 hours in every 24.
Through fire and water
The ladies from our church organised a daily rota to help with the housework. Up to this time my relationship with God had been rather superficial. But now I found myself in a situation where I could not cope, and I needed his help.
One day, I read a magazine article which related a traumatic experience. It quoted from Psalm 66: ‘For you have tried us, O God; you have refined us as silver is refined. You brought us into the net; you laid an oppressive burden upon us. You made men ride over our heads; we went through fire and through water, yet you brought us out to a place of abundance’.
The author told how he had been brought into such closeness to God that he was actually grateful for what had happened to him. I knew that this was what I needed. God could use this experience to make me the person he wanted me to be. I prayed, ‘Lord I don’t care what it takes. Just get me to that place of abundance’.
Ellen deteriorated from then on. She was in and out of hospital with pneumonia, fungal infections, terrible bedsores and ‘failure to thrive’. At 5 months she weighed under 5lb. I became exhausted from sleep deprivation and had severe post-natal depression.
Finally I felt I could no longer cope. I reasoned that if I smothered Ellen with a pillow, everyone would think she had stopped breathing again and that I hadn’t found her in time – something that was quite likely to happen anyway.
As I thought it through, a doorway into freedom beckoned me, and the temptation became almost irresistible. We could put this all behind us, have another baby, and carry on our lives as if this ghastly episode had never happened.
Suddenly there was a ring at the doorbell. I opened the door and found the wife of one of our church leaders standing on the doorstep looking rather embarrassed.
‘I’m not exactly sure why I’m here’, she began. ‘I just had a feeling that God wanted me to come and see you right now, and that I shouldn’t delay’.
I broke down and told her what I had been thinking. She bundled the children and me into her car, took us home, tucked me up in a spare bed and looked after the children while I slept.
I didn’t know it at the time, but that day was rock bottom. It was never that bad again. I was amazed that God not only knew what I had been planning to do, but cared enough to stop me.
I had grown up with an idea of what God was like, but I had never thought of him as a trustworthy Father. Now I found he was challenging all my preconceptions. I began to read the Bible hungrily, beginning with the Psalms.
When I reached Psalm 45:10-11, I read these words: ‘Listen, O daughter, consider and give ear. Forget your people and your father’s house. The King is enthralled by your beauty. Honour him, for he is your Lord’. It was a moment of revelation.
God, in Jesus Christ, was telling me to forget my misconceptions of him, and to understand that when he looks at his people he is utterly enthralled by what he sees, and longs for us to feel the same way about him.
Gradually, over the ensuing months, the depression lifted as I began to spend more time in prayer and reading the Bible, growing to know and love my heavenly Father. And this relationship with God was the place of abundance I had longed to reach.
If raising children is like running a marathon, raising Ellen was like running a marathon up a 1 in 3 hill over loose rocks and scree while wearing roller skates! We battled with the Education Authority to get appropriate schooling for her. We battled with the Social Services to try to get some respite care. The years were punctuated by frequent stays in hospital and repeated orthopaedic operations.
But though it was difficult, it never overwhelmed me again. I was living in that place of abundance.
By January 1995 Ellen’s spine had developed a curve of more than 90 degrees, compressing her heart, lungs and stomach and putting her at risk of heart failure. The surgeon explained that, to save her life, he would have to insert a steel rod in her spine within the year.
He spelled out the risks. She might not survive the operation. The dangers of handling the spinal cord meant the possibility of paralysis. The operation would last a minimum of 3 hours if all went smoothly – but any complications would make it take longer. She would need 48 hours in intensive care, followed by a month in hospital.
We asked two of our church elders to come and anoint Ellen with oil in accordance with James 5:14-15. On the day of the operation we stayed with her until the anaesthetic took effect, and then went home to our other two children.
Later, the telephone rang. My heart was in my mouth as I took the call; it was too soon for the operation to have been successfully completed. But it had gone so smoothly that it was over in two and a quarter hours.
The surgeon told us he was ‘amazed’ and ‘delighted’. After four hours Ellen was well enough to be returned to the children’s ward, and was discharged from hospital a week early. As I sat by her bedside throughout those three weeks, I was astonished at, and grateful for, the amount of real joy that God gave me.
So it came as a surprise when, some months later, I was hit by a torrent of feelings, a crushing weight of sadness at what Ellen had had to suffer. I put on a tape of worship music. As I listened to the words, ‘My comfort, my shelter, tower of refuge and strength’, I suddenly had the most profound experience of being wrapped around and around in God’s comfort like a blanket.
It is a feeling that has never entirely left me since. In that moment I understood that it is worth absolutely anything we go through just to know that our comfort comes from him. If we never needed comforting we would miss much of what Jesus Christ can be to those who trust in him.
I began to be challenged by Isaiah’s prophecy about Christ, which says he would come ‘to comfort all who mourn’ (Isaiah 61:1-3). I had been desperately in need of his comfort, and had received it. Should I not now reach out to comfort others in similar need?
With my church I set up a support network for parents in our area who have seriously ill babies in hospital. I have a team of 20 volunteers, supported by a prayer team. The volunteers do shopping, cleaning, washing, ironing, babysitting – anything to relieve the burden of everyday tasks and leave the parents free to concentrate on their sick baby.
Although the hospital authorities do not permit us to share our faith with clients unless they ask us, we are demonstrating the love of God to the community in which we live. We are not permitted to preach the gospel unasked, but we are ‘doing the gospel’.
I believe people will ask what motivates us and we will have opportunities to share with them our faith in Jesus Christ. So far we have helped 17 families.
Ellen is now 16, and I can testify that God is faithful, and has always supplied us with sufficient grace for every situation. I firmly believe that if we allow God to refine us as silver, he really does make all things ‘work together for good to those who love God’ and reveal his glory in our lives (Romans 8:18, 28).