I will never forget the first time I heard the words 'Spinal Muscular Atrophy'. My wife and I were sat in Pendlebury Children's hospital in Manchester being given the results of the muscle biopsy that had been carried out on our first daughter Rebecca. The consultant Neurologist sat down with the family care officer Carol Cole and said 'Spinal Muscular Atrophy' I don't remember a lot else about that meeting accept for the fact that the family care officer told us about the Jennifer trust.
Many of you here today have sat in that same place and you know that your lives were never the same again, once you heard those words Spinal muscular atrophy. Experience shapes our lives and it is our common experience of having been affected in one way or another by SMA, that brings us here today. We are here to remember those whom we have loved and lost and to give thanks for the 15 years that the Jennifer trust has helped, in so many ways, those families effected by SMA.
Whenever there is suffering in life it raises questions. Questions about ourselves, but also inevitably questions about God. I am now a Baptist Minister and when our first daughter Rebecca was diagnosed with SMA I was just about to go off to train for the Baptist ministry. I could not understand how God could allow this to happen to us, it seemed so very unfair. We were leaving behind the security of a job, a house, our home, family and friends to serve God then we discover that our daughter is dying.
As it was, we decided to put off going to college for one year and we went the following year. Ironically we were still in the same situation. Rebecca had died two weeks before her first birthday and unexpectedly, and very much unplanned, Susan had become pregnant again and our second daughter was born in the August as we were due to go to Bible college in the September. We had the diagnosis confirmed the day before we left for college that Charlotte was also effected by SMA Type 1.
For myself the questions that arise from my own experience have kept drawing me back to one character in the Old testament. Job, an innocent man, who suffered not only the loss of his children but of his livelihood his family and his health.
Over the years, I have found the story helpful because Job asks of God the same questions as perhaps many of us have asked. Why do the innocent suffer? Why has this happened to me? What have I done to deserve this? Job is angry with God for allowing him to suffer, which again perhaps many of us have felt. Sometimes people and the Church are not comfortable with people who feel angry with God.
The story of Job shows that its okay to be angry when things go wrong, God does not expect or want us to hide our feelings.
Job was also let down by his friends. You might have heard of Job's comforters, friends who come and visit Job with words of wisdom, but who only add to his suffering. I am sure you may well feel that you have been visited by some of Job's modern day comforters. People, whom because of the enormity of the sadness and circumstances, don't know what to say and so often say the wrong thing, just like Job's comforters.
I always give people the benefit of the doubt. I mean how does the lady at the supermarket checkout know the awkward situation she puts my wife in, when she asks the innocent question do you have any more children? What does my wife do? Does she spend the next 5 minutes explaining to a complete stranger about our sad loss or does she deny the fact that our other two children existed. I am sure many of you have faced similar situations.
Like the person who desperately wants to say something about the death of our children but says completely the wrong thing, for example, the lady who said to my wife "perhaps this is God's way of telling you He didn't want you to have children" - but as I said, I like to give these people the benefit of the doubt. How could they know what to say if they have never faced a similar experience? In fact there's a big part of me that is jealous of their naiveté.
Maybe my experiences have enabled me, in some circumstances, to be a better Baptist Minister than I would have been without these experiences. I can identify with a Jewish Rabbi, Harold Kushner who on page 140 of his book, 'When Bad things happen to good people' writes this about the death of his own son:
I am a more sensitive person, a more effective pastor, a more sympathetic counselor because of Aaron's life and death than I would have ever have been without it. And I would give up all those gains in a second if I could have my son back. If I could choose, I would forego all the spiritual growth and depth which has come my way because of our experiences and be what I was 15 years ago, an average rabbi, an indifferent counselor, helping some people and unable to help others, and the father of a bright, happy boy. But I cannot choose.
So in other words what I am trying to say is this, in the nicest possible way, I wish that I had never met any of you! But seeing that we cannot choose I am very glad to have met you.
What we can choose is how we allow our experience to shape the rest of our lives because in one way or another it will.
And it will also shape the world that we live in which itself is pretty messed up. As is illastated by the story of a college student who was truggling in many areas of his life. He spent a great deal of time feeling angry and frustrated. Whwn he could stand it no longer, he went to the dim and seldom-used chapel on campus. He paced up and down the aisles, slapping the back of the empty pews. He yelled, he cried, and he raged at God. "God you created the world...what could you possibly have been thinking? Look at the problems people face. Look at the pain, suffering and hunger. Look at the neglect, the waste, the abuse. Everywhere I look, I see messed-up people, hurting people, lonely people!" The young man ranted and raved on and on. Finally,exhausted he sat in the front pew and looked hopelessly at the cross. Its tarnished surface reflected the dusty sunlight filtering in through the stained glass windows. "Its all such a mess! This world you created is nothing but a terrible mess! Why even I could make a world better than this one!" And then the young man heard a voice in the silence of that dusty chapel that made his eyes open wide and his jaw drop. "And that is exactly what I want you to do." The story of Job does not offer an answer to the problem and the unfairness of the innocent who suffer, but what it does show is that God is there in the midst of those who suffer. God hears the cries from the hearts that have been broken.
Another thing that suffering does is it brings the opportunity for others to help those who suffer. Jesus when faced with a question about a man who was born blind replied, it was not anybody's fault that this man was suffering "but this happened so that the work of God might be displayed in his life" (John 9:3)
The Jennifer trust, for 15 years has been doing just that, in response to the suffering of those people effected by SMA. We have been given a chance to tell our stories in the presence not of Job's comforters but of Jennifer's family. People who know what it's like, people who have experienced the joys and the pains that SMA brings. But also people who have offered hope for the future.
The best equipped people to help are those who fully understand the situation. There's a lovely story told of 'The puppy that nobody wanted' The sign on the door said 'Puppies for sale'and so the little boy went inside to look. The man inside the pet shop showed him five little puppies. They were about the cutest dogs the little boy had ever seen.
"How much are they?" asked the boy.
The man replied, "Some are fifty dollars, some are more."
The little boy reached into his pocket and pulled out some change. After counting it, he said, "I have a dollar and forty cents."
"Well,I am afraid you will have to save up and come back later. Just then, the pet store owner's wife brought out another puppy. It was smaller than the other puppies, and had a bad leg. It could not stand up very well, and when it tried to walk, it limped very badly.
"What's wrong with that puppy?" asked the little boy.
The pet store owner explained that the vet had discovered that it didn't have a hip socket. It would always limp and always be lame.
"Oh I wish I had the money to buy that puppy!" exclaimed the boy with excitement. That's the puppy I would choose.
"Well that puppy is not for sale, son. But if you really want him, I'll just give him you. No charge."
But the little boy got quite upset at this and said, "I don't want you to give him to me, that little dog is worth every bit as much as the other dogs you have for sale. I'll give you a dollar and forty cents now, and I'll give you fifty cents a month untill I have paid for the dog in full."
The pet store owner was perplexed. "You don't want to spend your money on this little dog, son, He is never going to be able to run and play with you like other puppies."
Then the little boy reached down and rolled up his pant leg to reveal a badly twisted, crippled left leg, supported by a big metal brace. He looked up at the pet store owner and said,"Mister, I don't run and play too good myself. I figure this little puppy is going to need someone like me who understands."
What I like most about the story of Job is that it is a sad story with a happy ending. Job is restored in his relationship with God, he has more children and regains all the wealth that he had lost.
When we first came into contact with the Jennifer trust the idea that our story might have a happy ending seemed a million miles away and I am aware that for some people here today, that maybe exactly where you are.
But I say this, we were greatly encouraged by meeting others who had survived the trauma of losing a child, and to meet some who had gone on to have healthy children. The happy ending to the story of Job did not mean that his years of suffering and grief were taken away, or that the pain was in any way numbed, but that he was surprised to find God in such a place.
Today we have two healthy children, our story has had a happy ending. In the long term this is what the Jennifer trust is working towards, a happy ending. Through the funding of research into SMA the Jennifer trust is working towards discovering as much as it can about SMA in the hope that one day in the future there will be a happy ending for those who actually have Spinal muscular atrophy.
And so I offer you the story of Job, a man who was a forerunner for another innocent sufferer, God's own son Jesus. His story continues to change and transform broken lives, not by taking away the pain and suffering of life, but by entering into it.
Stories are very important and it's important that people have an opportunity to tell their story. We give thanks today for all the stories that are represented here today. We give thanks for our precious children, those who are physically with us, and those, who while not physically present with us, remain very much a part of our lives and our families. We give thank for the Jennifer trust who, for 15 years have been giving families the opportunity to share their own stories, to listen to other people's stories, in the hope that along the way we can help people in their time of need and offer the hope, however distant, of a story with a 'happy ending'. Amen.
© JTSMA, 2000