Emily Weaver

A Special Life

A Special Life

(An excerpt from 'A Special Life')

Our third child was due to be born in March 1987

On January 4th 1987 I was at work when the telephone rang. It was Liz. “I’ve seen a little blood and phoned the doctor. It’s probably nothing, but he wants me to go into hospital for 24 hours to be on the safe side. I’ve arranged with your mother to come and look after the children.”

It was around 2.30pm and naturally I was worried, so with no customers around I decided to shut up shop and go home. When I arrived home my mother was there for the children so I popped into the hospital. Liz seemed bright enough and confident that she would be home in the morning. I went home to mum and the kids.

At a little after midnight the phone rang. I was in a daze having being woken so suddenly and reached out for the phone beside the bed. “Mr Weaver, this is the hospital, I’m afraid your wife has suffered a serious haemorrhage and you will need to come in immediately.”

I gathered my thoughts.  Liz and I had led reasonably healthy lives and hospital and illness was something we weren’t really used to. I did not know what to expect. I woke my mother and the children. They all sat on the stairs bleary-eyed as I explained that I had to go to the hospital but would let them know as soon as I had news. I assured them there was nothing to worry about and that they should all go back to bed.

When I arrived at the hospital I was shown into a little side room close to where Liz was. At that time of night everything was quiet and apart from the occasional night staff passing the doorway, I was alone. I picked up a magazine and tried to read it. I expected a doctor to come along and tell me everything was alright. I waited and wondered.

Then suddenly, I saw nursing staff hurrying past with blood-soaked sheets. They became aware of me and their actions became a little more discreet. It went quiet again. Minutes seemed like hours. Then a doctor appeared in the doorway. “Your wife has suffered a serious loss of blood and we’ve had to bring your baby into the world to try and save both their lives” he said. I asked how they both were. “We need to get your wife’s blood levels back and the next few hours will be critical for her. As for your daughter – yes, it’s a little girl – I’m afraid she isn’t expected to survive.”

The doctor said “I think you should see your daughter now.” He led me to the paediatric intensive care unit. There in an incubator with tubes and wires attached to all parts of her tiny body, was my little girl, fighting for her life. He explained that in order to save my wife’s life they had to perform a caesarean birth and the speed and urgency needed resulted in my daughter suffering severe brain damage. Her injuries were such that she was only expected to live for a few hours, days at the most. My daughter had arrived in this world three months prematurely.

Naturally at that time, my main concern was for Liz. The doctor took me to her. Liz smiled and tried to reassure me, but she was very weak and the doctor indicated for me to let her rest. Throughout the night she was constantly attended by the medics checking her blood levels and pressure and all the other life support apparatus. I held her hand through the night and into the early hours of the morning.

At about 6.00am the doctor who during the night had clearly been very anxious about my wife’s condition offered a reassuring smile. “Your wife’s out of the woods now Mr Weaver, her condition is stable and should improve over the next few hours. Hopefully, she’ll be well enough to leave hospital in a few days.” I sighed with relief. “I don’t know about you Mr Weaver” he said, “but I need a shave and a bit of rest. I suggest you pop home and do the same.  Your wife’s going to be okay.”

I kissed Liz and left the hospital. As I drove home, my thoughts were a mixture of relief and trepidation. Liz was improving but the future looked formidable and I knew this would be the turning point in our lives and I couldn’t see how it could possibly be for the better.

The Turning Point

A few days later Liz left hospital. Together we visited our new baby who we called ‘Emily Jayne.’ It was a surprise to everyone, not least the doctors and nurses that she was still with us. It was heartrending to watch her through the glass incubator, so tiny, so vulnerable, so innocent and so ill. It was clear to all that here was a fighter and we dared to hope that she would win her battle and prove the experts wrong. As the hours and days went on, our hope was strengthening.

Soon our other two children, Claire our other daughter who was then thirteen and Dale our son who was nine, were able to visit too, as well as my mother and father. We could only watch Emily through the glass and we longed for the moment when we could hold her close and cuddle her. Now that the doctor’s knew she could not be written off so quickly, an assessment was made and we were told that she had suffered severe brain damage that would leave her very severely disabled. The prognosis was that she would be completely dependent on others for the rest of her life. However, we were not told what her condition actually was, and only learned much later when we received an invitation from The Spastics Society to attend a meeting. This unofficial diagnosis informed us that Emily had Cerebral Palsy.

As we looked into the anxious blue eyes of our little girl trapped in a body that would be her prison, we vowed to devote our lives to caring for her and to fight to make her life as bearable as possible.

Later that evening I went to my room to be alone. I thought deeply. For the first time I pondered on my life, its purpose and what I should do next. I prayed and I got an answer.

(The full story is being made into a book. In the meantime, more excerpts will follow on this site)


The Will To Live

When Emily’s diagnosis was made, we were told by doctor’s that she would always be severely disabled and there was nothing more anyone could do. Their advice was to take her home and just feed her and make her comfortable. We accepted the advice about her disability but we did not accept there was nothing more we could do. So, we ignored their ‘professional’ comments and did things our way and that was to give her ‘the will to live.’

Imagine, if you were so disabled that you could do nothing for yourself? If you couldn’t walk, talk or feed yourself. If you couldn’t see. If you couldn’t even move; unable to even turn in bed. Couldn’t scratch your nose. Couldn’t fend for yourself or defend yourself. To be totally reliant on others for every second and every requirement in life - would life be worth living for you?

We truly believe that the only reason Emily is still with us is because every moment of every day we focus on giving her the will to live. That means constantly talking to her, stimulating her, motivating her, engaging with her and involving her with us. Playing music, reading books, singing, laughing and having fun with her. Taking her out to socialise and meet other people and welcoming other people into her life, and ultimately making her life worth living.

Even as we get older, Liz and I are determined to keep that momentum going, though it does get harder. Fortunately, we do have support from statutory services as Emily’s wellbeing depends directly on our wellbeing.

Emily’s future is uncertain, but then so is ours, so we try not to look too far ahead and I do sometimes wonder how Liz and I will be coping in say 5 to 10 years time.

Guess what? I know we’ll be okay for as long as Emily continues to give US the will to live.