Who Cares? - Sophie’s Death

At 8.55 pm on Tuesday, 30th May, I was no longer the mother of four children, but three.  My beautiful daughter, Sophie, suddenly died.  Seven years earlier, aged only 17, she contracted a rare infection of the brain and a few weeks later, in Intensive Care, suffered a cardiac arrest.  The oxygen starvation resulted in irrevocable brain damage and when she finally returned home, she needed 24 hour care.  Her condition became stable and we implemented a rigorous regime of physiotherapy to maintain her body in good physical shape.  We prayed that, one day, either through drug or stem cell treatment, something would be discovered that could once again give her a life worth living. 
Our lives revolved around Sophie’s welfare but we still had three other children growing up.  With both boys at university, this year I arranged a short half-term break in Barcelona for my younger daughter Lydia and me.   Dad would stay at home with Sophie.  When we left on that Tuesday morning, Sophie was fine.  And she remained fine all day, eating well and showing no signs of distress or illness.
            That evening, she was sat on the sofa with her Dad watching football when he noticed her breathing sounded laboured.  He telephoned a close doctor friend, asking him to drop by.   Very soon, Sophie’s breathing became less reliable and while waiting for the doctor, he called our next door neighbour, a nurse.  Within forty minutes, Sophie died.  We later learned that it was acute bronchopneumonia.
Lydia and I were preparing to go out for supper in Barcelona when my mobile phone rang.  Lydia answered cheerfully.  I saw her face change from a smile to terror with tears starting to fall, as she wordlessly passed the receiver to me. 
‘Sophie’s died,’ he sobbed.  I screamed back.
‘What?  How?’  I didn’t weep.  I just shook uncontrollably and felt cold.   We couldn’t get a flight that night, but the two boys returned home to their father and Sophie.
 As she had not been ill or seen her GP recently we knew there would be an autopsy.  Although not told why, my husband was informed that the body should be removed within 6 hours of death.  He refused.  He knew that Lydia and I needed to see Sophie and that we couldn’t get home until the morning.  On our arrival, there were two men standing beside a blue van outside our front door.  My husband was standing on the doorstep with his arms folded.  Sophie was lying on the sofa with her eyes closed and hands neatly folded in front of her. There was no sign of disability and she reminded me of Sleeping Beauty.  Then I wept, I wailed and I howled.   I hugged her cold, waxen body and face to me.  I told her how much I loved her and how sorry I was not to have been there for her.
The two men took her away – I didn’t watch – I didn’t want to see her zipped up into what looked like a giant plastic pencil case. But I was surprised that men can simply arrive with a van and have the right to take my daughter away without even leaving a note to say who they are. 
I cried little during the following week; I simply registered her death and organised the funeral.  It was very straightforward.  I was pleased to discover a
company that encourage families to take charge of the procedure.  We had a wicker casket made and Sophie came home the night before her funeral.  Having been frozen and defrosted in the meantime, she no longer looked the same – her hair was still beautiful and her hands were as soft, delicate and elegant as ever but her face was pinched.   The next day, we took her in the family MPV to the crematorium, and her brothers, boyfriend and father carried her inside. 
If there is such a thing as a lovely crematorium, it is on the southern edge of Bath with one wall of enormous plate glass windows looking south across a luxuriant valley.  We didn’t want the ceremony rushed and paid for a double slot of an hour.  Only when sorting out details did we learn that an hour really means maximum 45 minutes (a half hour booking only offers 20).  I was furious; there is no pause between funerals and it was too late to pay for additional time. 
In my opinion, when the chips are down, women are stronger emotionally than men – at least they are in my family.  Neither boys, nor Sophie’s Dad felt able to speak but Lydia and I did. Along with others.  We heard how she was the epitome of what her head teacher could ask of a pupil, that she was unusually empathetic but also wicked fun and recognised that her best friend was her twin brother.  There was lots of music representing Sophie’s teenage years – from Mozart to Tupac and Courtney Pine.  Many people came from home and abroad to honour her short life.
                        Even before the funeral, I was desperate to rid the house of all that represented her illness.  I always hated her wheelchair, commode and hoist; I wanted the paraphernalia and ugly ‘easy to put on’ clothes gone as soon as possible.  I immediately informed the DSS and DLA that Sophie was dead.  I was keen to do this, though even in my manic state, recognised that for many in our position this is tough. Financial aid is immediately removed upon death and can cause serious hardship to families when carers are at their lowest. 
I am still working to remove all trace of her awful suffering and yet during those years, I tried hard only to concentrate on the present.  It was too painful to dwell on the past and what might have been while I looked after the shadow of who my daughter once was.  I was determined to do the best for the daughter I had.  But of course Sophie was the little girl I taught to swim, the little girl who held my hand during the births of her younger brother and sister while her Dad took photos.  She grew to be the only person in the household, other than me, who noticed when the bin needed emptying or the loo roll replaced. Only now am I slowly allowing myself to recollect the vibrant child I had for seventeen years. 
            Only now too, after all this time can I eat a meal, leave the house, have a bath or do anything for myself, without constantly checking that Sophie is OK.  And the awful thing is that this freedom is wonderful – it’s great being able to do something without worrying about being held up or late.  Instead of arranging trips with friends, I can now go out with my husband – and it’s delightful.  But at what price?  The death of our daughter.  I do realise that the chances of her ever having a life worth living were slim and I feel torn. Life is easier for us at the cost of her losing the chance of ever having one worth living.
            Our sons were taking university exams and Lydia was in the midst of GCSE’s when Sophie died.  As with her illness, her death put these hurdles into perspective.  On the few days that Lydia was without exams, I encouraged her only to do what she wanted – which did not include revision.  She became needy for cuddles, her parents and her brothers.  We all became needy for each other.  The children rented lots of videos for the evenings and throughout the daytime, their friends and ours dropped by.  The weather was beautiful and we all sat in the garden drinking too much beer and wine.  We laughed and cried together.  Once again, I was overwhelmed by the goodness of people.  Other parents recognise that Sophie could have been their daughter; and they recognise that they can only start to imagine the pain we are living or she that through which she lived.             
Not being with her when she died, I feel that once again, I failed as her mother.  At the same time, I am pleased that Sophie was alone with her Dad rather than alone with me.  I am sure some people would have questioned whether or not I had killed her because I have always voiced how dreadful Sophie’s existence had become. And that she was aware of it.  Her frustration was evident so often and in so many ways.  But her Dad was different – he was not only devoted to her but equally determined to make her better.  Although I am not happy that my beautiful daughter is dead, I am relieved that her torment and our agony of witnessing that torment is over. 
            Despite her severe disability, I had always assumed that Sophie would outlive us.  I am sure that no mother is ever ready for her child to die.  I hate to think that I will never ever see her again - never be able to cuddle or smell her, never be able to show her how much I love her.     Any possibility of her getting better has gone.   But I can feel that the weight of the last 7 years is starting to lift and I can begin to remember again my gorgeous, vivacious, sassy daughter. Although I weep copiously now, I am going to allow myself that privilege of remembering what a fantastic person she was.  I will exult in who she was and continue to be proud of being her mother. 

© Judith Cameron