Sitting in a hospital consulting room and learning that two of our four children would probably only live into their teenage years was not what we imagined we would be doing that Friday morning – but that is what was happening to us just over twenty years ago. We listened as the consultant paediatrician delivered the diagnosis that Amy and Daniel (then aged 6 and 3) had a rare, genetic condition called Sanfilippo Syndrome. We soon learned that the typical progression of their condition has three stages, each lasting around five years. During the first few years, development is delayed; then they stop learning new skills, rapidly falling behind their peers and going through a hyperactive phase; and then in the last stage they lose all their abilities and become totally dependent. The average life expectancy is 16 years.
In one sense, our lives were turned upside down. Yet in another, everything was the same. On the day we received the news nothing changed – we still had busy lives to live with four young children (all under 8) – but many things were soon to change as we faced the months and years ahead. Amy and Daniel moved to a special school, we had adaptations made to our house and our other two children gradually saw that Amy and Daniel’s lives would be very different from theirs. Our family would no longer be ‘normal’.
Jan and I had both become Christians as students through the Christian Union at Leicester University. Before long we were involved in church and a young people’s work and we were soon leading teams of young people reaching out with the gospel through United Beach Missions. Family life had become hectic with the arrival of the four children. Our faith was real and an important part of our lives; we served the Lord in both church and other areas.
But it was relatively easy for faith to be real when everything is going more or less as we want it to. Now the totally unexpected and unwanted happens, what then?
Twenty years on
Over the years, God has been gently teaching us a number of lessons which at times have been very painful. However, through it all we are convinced even more that God is good and works all things (whatever they are) for his purposes and his glory (Rom. 8:28) – and along the way wants to richly bless us too.
Now both in their twenties, Amy and Daniel have lived longer than expected. They are totally dependent for all their needs, requiring 24/7 care. They have feeding tubes, are on a cocktail of medication and have no mobility, communication or understanding. We appreciate the carers who come in and help us so that Amy and Daniel can continue to live at home. Yes, life can be difficult, but we are thankful to the Lord for each precious day we have with them.
Looking back, we have a great sense that God has been with us through the ups and downs. We haven’t been able to do all of the ‘normal family’ things we might have done but there have been many different opportunities. We’ve met some amazing and interesting people and have even been invited to Downing Street! Our lives adjusted to a new ‘normal’. We, along with our other two children, have learned to walk with God day by day, leaning on his strength instead of our own and not worrying about tomorrow. The future hope that all Christians will enjoy — living with Christ forever, in resurrection bodies, in an unbroken ‘renewed’ world – has been a focus that has become increasingly real to us.
God’s leading is often surprising
Our consulting room experience was traumatic and the years that followed were not what we would have expected or wished for. We never expected to have two disabled children, I never expected to have to leave full time employment without another job to go to. We never expected to be planning our children’s funerals and then we never expected Amy and Daniel to live as long as they have! Yet through all these things we have learned that God can be trusted.
God’s leading always includes his provision
As Christians, we believe that God provides for all our needs but it is only through our difficulties that we have experienced the reality of this. At times, we found ourselves with no idea why things were happening and wondering what would happen next. It hasn’t been easy but God has been faithful and we are thankful as we have seen Him provide physically and spiritually, more abundantly than we could have imagined.
An excellent children’s hospice opened in our town just before we knew we needed it for respite breaks and extended their age limit to 30 just as Amy reached 18. Another time Amy and Daniel were provided with 24-hour care in our home when our own health necessitated it. We have appreciated having a dedicated team of health professionals including our GP (who also works at the hospice and goes beyond her duty in caring for us all). Special friends have trained as foster carers to help us and many people have prayed for us.
Recently our local authority ‘pulled the rug from under our feet’ over Amy and Daniel’s support package in our home. It has been something of a roller-coaster but now we find ourselves about to begin a new way of organising their care which is even better than it was before.
God is faithful. His leading is often surprising. But as He leads, He provides.
God is interested in how we change on the journey
As we look back we see that God has been making us more like Jesus. He has used the unusual events of our lives to do this. The circumstances and trials others face will be different but whatever they are, He wants each one of us to depend on Him through the difficulties and to be transformed by them. Challenging circumstances need not be the things that get in the way of growing in Christ. Instead they can be the very things that make us run to Christ and grow in likeness to Him.
We are thankful to the Lord for what He has revealed of Himself as we have cared for Amy and Daniel. As we look to the future, we know there will be some very painful days ahead. Yet we know, that the God who has been faithful in the past will continue to be so. He does not change.