‘Something of the beauty and excellence of her maker and Lord shone very brightly through the fragile clay of her uncooperative body.’
Heather, the first child of Rose and Steve Marmion, is now with the Lord, but her story is a testimony of faith in the face of tremendous trials.
To begin at the beginning, Rose and Steve first got to know one another as friends when they were just fifteen and nineteen, respectively. The friendship developed and four years later they started dating. Steve, in the meantime had joined the police force, and was working as a ‘beat bobby’. (His current career in computing came later).
They were married when Rose was twenty-three, and two years later Heather was born. Both pregnancy and birth had progressed normally, and during Heather’s early months, there was no indication of anything seriously wrong with her. She was an alert and curious child, who was very aware of her environment.
However, at ten months old, she had three febrile fits in quick succession, which resulted in her being admitted to hospital. When she returned home four days later, Rose describes her as ‘a different child’ – she had lost almost all muscle control.
Months of medical tests followed, of course. But no clarity or prognosis was given until just before Heather’s second birthday. A neurologist from St George’s Hospital told them that she had a condition called Rett Syndrome, for which there was, at that time, no definitive assessment. (Thanks to advances in genomics, there now is). The NHS describes it as ‘... a rare genetic disorder that affects brain development and causes severe physical and mental disability from early childhood. It is estimated to affect about 1 in 12,000 girls born each year and is only rarely seen in boys’. At the time of Heather’s diagnosis, the outlook for any child with the disorder was very bleak.
A new baby in the home will often mean sleepless nights and seemingly endless crying, and this can be especially tough with a first baby. But, for Steve and Rose, their difficulties were to prove far more challenging.
Rose finds it hard to look at pictures of herself during this period, because all she sees is a young woman utterly unprepared (who could be?) for the overwhelming things that lay before her.
During Heather’s second year, she experienced regression, whereby she started losing many of the skills and developmental achievements that she had already learned. For example, she had been given various items of support equipment from the local authority, and she had learned how to sit up on a box. But just a week after mastering this, she started to fall off the box. She also started to have bouts of screaming and crying, which was distressing for everyone. On one memorable day she cried continuously for twelve hours. Steve remembers this vividly because she was screaming when he left for work in the morning, and still screaming when he returned that evening.
Often, during the night, Heather would not sleep, and Steve would resort to putting her in the car and driving forty or fifty miles around the countryside, until she would eventually fall asleep. It was a difficult time. But there are humorous memories, too. Steve would often ride with her on his bicycle, and as she grew, their combined weight became too much for the bicycle frame, causing it to collapse!
Rose and Steve, in their search for a support network, soon joined an association for girls with Rett Syndrome, and as their knowledge of Heather’s condition grew, they came to realise that a lot of girls with the condition came from single parent families. This made Steve determined to be a strong support for Rose and Heather. In Rose’s words – 'He’s a keeper!'
When Heather was around three years old, Rose and Steve decided they wanted to do something more physically active with her. They belonged to an organisation called - BIBIC - British Institute for Brain Injured Children, who recommended a programme of patterning. This involved guiding the child through lots of physical activity, whereby they could, potentially, learn movements and develop skills for themselves. Heather started crawling exercises which required the help of three adults at a time, so, understandably, there were a lot of volunteers coming into their home to help.
The immediate effect was limited – although a few times, they did find Heather out of her bed, suggesting that she must have rolled or crawled. However, on a positive note, when Heather needed spinal surgery later in life, the work they had done during this period proved to have been an important foundation for further treatments, and certainly had a positive long-term effect.
Speaking about the limitations that Rett can impose, Rose says that Heather simply could not do anything independently. About half of Rett girls can walk at some point, but Heather was not one of them. They remember vividly the time she rolled over once. And it remains a poignant memory because it only happened that one time. If you sat her up, she would just fall over, because she could neither balance herself nor stop herself from falling. She was initially able to feed herself but lost that ability in the regression. Then, because of her poor muscle tone, she developed a severe scoliosis, leaving her back curved fully 90 degrees over to one side. This curve in her spine created a small reservoir in the bottom of her left lung, which made the lung very susceptible to infection. This was a huge concern, particularly since Heather already had a greatly reduced immune system.
Her speech was minimal. She managed ‘Mum’ just once, while they were out in the car. Rose can exactly recall the time and place of that moment in Twickenham because she was so shocked by it. Heather never said it again, although clearly the words were in her head. Interestingly, she did manage to say 'No!’ on a few occasions!
On a more encouraging note, because of all the movement work Rose and Steve had done in Heather’s early years, the spinal surgery she had at seven, proved much more successful. The surgeon was able to get Heather's spine completely straight, and then he fused it upright. It was like one long bone, with metal rods through much of it, holding her vertebrae together. As a result, she was able to sit up with a special seating system to support her.
Heather’s very limited speech made communication very difficult, although not impossible. Rose used to joke that they had telepathy. As she put it, ‘You find other ways to communicate, and you're just able to read the signs.’
When talking to Heather, Rose and Steve always spoke to her naturally, as if she knew exactly what they were talking about. They developed a card system for frequent words such as ‘Yes/No’ and ‘sad/smiley faces’, and – with her wicked sense of humour – Heather would often use these to get people into trouble!
On one occasion, she had a bruise on her knee at school. The school were unsure how it had happened but filled out the required accident form. When Rose arrived home with Heather, Steve was there with an outreach nurse named Anna, from Tadworth Court (The Children's Trust - Tadworth Court) Steve began to question Heather about the bruise using the cards.
‘Did you hurt your knee?’
‘Did it happen at school?’
‘Was it Anna, the nurse?’
Heather claimed she had bashed her knee when Anna was lifting her; but this had never happened. Laughing, Anna called her out – 'You cow bag!’ which caused Heather to immediately burst out laughing with her.
The photograph below is of Heather’s beloved cuddly toy Mr Fox, who kept her company in her hospital room when she was having her febrile fits at the age of ten months. Because of his shape, he was a good prop. He could go behind or beside Heather and support her, and she had a special bond with him. Mr Fox came home to live with the family and is still living with them. And as you can see, he's gone through a lot of patching over the years.
Having one child with such severe disabilities might seem more than enough for anyone to deal with. But Rose and Steve, despite the obvious challenges, were both committed in their wish for more children. So, when Heather was seven, Michael was born. After another five years, his younger brother Connor arrived, and four years after that, Rose gave birth to a second daughter, Eloise. Steve says that, had things been different, their plan probably would have been to have three children within maybe four years of getting married; but God put other things in their path.
By this time, the Marmion family was living in Barnes, an easy distance from Heather’s school which was attached to Chelsea and Westminster Hospital.
At this point it is relevant to talk about Steve and Rose’s religious background. Steve had been raised as a Roman Catholic, and Rose had been sent, as a child, to a ‘Church of England’ church. Although neither of them thinks they heard the Gospel then, this background did make them want to take their children to church. So, they started attending a liberal ‘high’ Anglican church in Barnes, which was very welcoming, and which Heather enjoyed.
Their bedtime routine with Heather, included praying the Lord's prayer and other prayers. Heather loved these routines, but Rose and Steve remember finding it odd that sometimes, during these prayer times, Heather would look pointedly over Rose's shoulder and smile.
Rose would ask, ‘Is there something behind me?’
‘Is it an angel?’
Rose did not like this! She was no friend of Jesus at that time. In fact, for most of her adult life, she had been involved in occult practices, and would have described herself then as a Satanist.
Heather, though helpless and weak, was certain that Jesus, who had always been enough to keep her in the struggles she faced, was the only hope her Mum would ever have, or ever need. And she did everything she could to get Rose to know and love him. It is sometimes a mawkish cliché to say of someone like Heather that they are a ‘special child’, but it is an undeniable fact that many people really were drawn to her. Something of the beauty and excellence of her maker and Lord shone very brightly through the fragile clay of her uncooperative body.
A significant event in Heather’s life occurred the day after Michael’s birth on Wednesday 28th October 1998. She was struck with her first major chest infection. Steve went with her to Guys Hospital, where she needed a ventilator – a machine that, essentially, does your breathing for you. She was placed on intravenous antibiotics, and after two days, had recovered sufficiently to come off the ventilator. But during a subsequent chest infection, it became apparent that Heather was inhaling some of her food.
She stayed in hospital for four months. Of course Michael was a tiny baby at the time who needed constant attention, so Steve would spend the evenings and nights at the hospital, and when he headed off for the day’s work, Rose would take his place with Heather.
By 16 years of age, Heather had been on a ventilator no less than twenty three times and had also been admitted to hospital on numerous other occasions.
Her last chest infection resulted in her being admitted to Kingston hospital. In the ward, Heather was bright and alert but needed a little oxygen. The medics said she was doing well, and felt sure that once the infection cleared, all would be well. But her blood carbon dioxide level (which should be 4-5 in a healthy person and would be around 9 when Heather had a bad chest infection) was 19! Her lungs could no longer exchange gases; and nothing could help in this situation. Giving her more oxygen, would not help now.
It was remarkable how well she looked, given the gravity of her condition. But she had the indomitable Marmion spirit!
It goes without saying that Steve and Rose were stunned when they were given the news that she could have perhaps two months left of life.
So they took her to Shooting Star Hospice for two weeks, then to Demelza House in Sittingbourne, Kent.
The word ‘hospice’ can evoke images of bleak places full of sad people waiting to die, but these children’s hospices are nothing of the sort. They do provide vital support for end-of-life, but most of their capacity is used for respite care, a break for exhausted caring families. The Marmions had already enjoyed many happy respite holidays there, and they gladly swapped their summer holiday plans to be with Heather for palliative care.
During these weeks, it was emotionally very hard for Steve and Rose to stop Heather’s care-routines which had previously filled all their time. Routines such as ‘suctioning’, whereby Heather had to have a tube inserted into her nose to help her breathing, had to be stopped now. This, Steve found particularly hard – as a loving father, he naturally wanted to ‘do something’ – anything - to help.
Rose made herself busy preparing for the funeral and arranging things. She says she was glad for that time; but she was partly using the necessary planning to avoid going in to see Heather. She knew that if she went in and lay on the bed with her, she was accepting that Heather was dying – not at some vague time in the (hopefully distant) future, but right then and there. Some good friends lovingly forced her to face up to that truth.
The day before Heather passed was a beautiful, sunny day. Even then, she seemed still to be cheery and upbeat, and her sense of humour was still strongly evident. Only much later, looking at photos, did Steve and Rose recognise that the spark had gone. On reflection, they acknowledge that she looked tired.
Both Rose and Steve are hugely thankful to the hospice workers, who can read the signs and inform loved ones as time is drawing to a close. A phone call at eight o’clock the next morning prompted them to come down from the family suite and stay with Heather in her bedroom. She was unconscious at that stage.
As they waited with Heather, in her room, a track from Heather’s favourite band, ‘Good Charlotte’ was playing over the loop system.
'You know the happiest day of my life – I swear the happiest day of my life – is the day that I die.'
(Good Charlotte - The Day That I Die)
The track means so much to Steve and Rose, because earlier that year, for her sixteenth birthday, Heather had been to see ‘Good Charlotte’, whom she loved – as you can see in the below photo from a few days earlier.
The family had been in fellowship at Duke Street Baptist church for a while, and before going to Demelza, they had asked the senior minister there, Liam Goligher, to pray with Heather. Rose’s spiritual state was well known to Liam, but that didn’t deter him. Heather had long been, in her own way, gospelling Rose all the time.
Now, suddenly, Rose was faced with the grim certainty that, in choosing against God, she would not be with Heather after death; she would never see her again. She felt really convicted by this. This happened a few years before either Steve or Rose became Christians – but God was working then, using all these things. The Lord powerfully used Heather’s witness, even her death, to prepare them to find, as Heather had, everlasting life.
People have asked, many times since that day, what it was like. Rose says that it still doesn't seem real. And that isn’t because of some lingering kind of denial. It’s just that, looking back, what they see is themselves going through it. Whenever they remember that moment, they are given total assurance that Heather’s last, laboured breath on this earth was followed, immediately, by the pure joy of breathing in the sweet air of Heaven alongside her Saviour.
Steve did what many people do when faced with such an enormous loss – he threw himself into his work. It helped that they had three other children, who created a welcome and happy distraction – in the best possible sense! But it was during the eighteen months after Heather’s death that it became clear – and was confirmed – that both of their boys were also on the autistic spectrum. (Eloise, too, was diagnosed at age 6).
There were many challenges in those months after Heather’s death. Dealing with items that were closely associated with Heather – her chair, for example – was particularly hard. Various items of equipment that local authorities had provided, were returned back piece by piece, leaving a painful emptiness in the house. Steve recalls the coldness and insensitivity of some of the bureaucracy. Within three days of Heather’s death, they received a letter stopping her benefits, and stating that any overpayments would be claimed back. This was in huge contrast to the many, many days or weeks it had often taken to get a response from them while Heather was alive, and in great need.
In addition to dealing with this change, suddenly, the outreach nurses were gone, together with the whole support network of volunteers and professionals which had built up around them. They were back in the 'real world', and people would talk about things that seemed, relatively, so trivial, so utterly unimportant. One of the hardest things to accept was that, while their life had changed completely, for everyone else, life just carried on.
Rose recalls that the first year was just a blur, and only a few specific memories – like a visit to a zoo – are clear. Friends have said since that they were worried, at the time, whether Rose would make it. Rose herself just doesn't remember much about that time.
But God was able to bring comfort into this situation.
In 2010, two years after Heather had died, Rose and Steve were looking for a new church. Cornerstone came to their attention partly at the suggestion of a social worker, who wasn’t a Christian, but who thought it would be good for the three children to go to church to learn about Heaven. This lady thought that ‘angels and a vision of peace’ would provide some comfort to them.
Steve and Rose wanted a church that would also be a good fit for their boys, so with these thoughts in mind, Rose went online and found Cornerstone. When she also learned that the church met at Bedelsford School, where Heather had once been a student, this confirmed their choice.
After they had been attending Cornerstone for a couple of years, Steve became a Christian. Although he had been raised a Catholic, and attended church regularly, his role as an altar boy meant that he never attended Sunday School or received any age-appropriate teaching about God. No-one had ever communicated the Gospel to him. Hearing direct teaching from God’s word, with clear and Bible-based preaching, was a real eye opener for Steve. The way he puts it, his Christian education came fifty years later than it should have done.
Not long afterwards, Rose followed. It was a longer and more complex journey for her, as God shone into her heart the light of the glory of Jesus, drawing her gently but decisively out of the darkness in which she had been trapped for decades. And today, Michael, Connor and Eloise also love and follow Jesus.
In the wisdom of Almighty God, he chose to use the frailty and suffering of Heather as part of his plan to bring all this to pass. In the light of this I cannot help but think of what Paul writes:
‘Brothers and sisters think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him. It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness, and redemption. Therefore, as it is written: “Let the one who boasts boast in the Lord.”’
1 Corinthians 1:26-31 (NIV)
Heather’s body may have been frail and weak, but her faith in Jesus was strong. Now she is rejoicing with him. It will be a delight beyond words for us to meet her, to sing God’s praises with her and to dance with joy together. And we will indeed, because of what Jesus did for her, and in her, and through her. To Him be the glory.
By Gabriel Oak on behalf of Steve and Rose Marmion