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Overview
Language which develops ‘against all the odds’ is very precious. Words were not enough for Tom; it was signs that made sense of a world silenced by meningitis. Confidence came via joyful and positive steps to communication from babyhood; a brush with epilepsy, a cochlear implant in his teens and life as an independent young adult followed.
Product Details
| ISBN-13: | 9781847695772 |
|---|---|
| Publisher: | Multilingual Matters Ltd. |
| Publication date: | 04/17/2003 |
| Series: | Parents' and Teachers' Guides , #6 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 184 |
| File size: | 6 MB |
About the Author
Jenny Froude was a journalist on Woman’s Weekly before retiring to have a longed-for family. New communication skills were needed when the youngest was deafened by meningitis at 5 months. The years that followed were a steep but lovely learning curve! She studied Signed English and worked as an SSA in a Senior Hearing Impairment Unit for four years.
Jenny Froude was a journalist on Woman’s Weekly before retiring to have a longed-for family. New communication skills were needed when the youngest was deafened by meningitis at 5 months. The years that followed were a steep but lovely learning curve! She studied Signed English and worked as an SSA in a Senior Hearing Impairment Unit for four years.
Read an Excerpt
Making Sense in Sign
A Lifeline for a Deaf Child
By Jenny Froude
Multilingual Matters
Copyright © 2003 Jenny FroudeAll rights reserved.
ISBN: 978-1-84769-577-2
CHAPTER 1
The Time of Crisis
The depths of human affection and kindness are not plumbed without a crisis. (Jack Ashley, 1973)
I don't know whether you know what an enormous volume of prayers and goodwill goes out to you from everyone who knew you at Woman's Weekly. I hope it helps you a little. (Gaye Allen, Home Editor)
I shall never forget the August 1980 Bank Holiday. All weekend I had been irritable and depressed for no apparent reason. Strange, since the weather was good, our three children all well and PMT isn't a problem when one's breastfeeding and the hormones aren't back to normal. But I couldn't shake off a feeling of impending doom. It even prompted me to search a cupboard, desperately trying to find an article from Good Housekeeping magazine which had haunted me some years previously, about a mother whose first child died shortly after birth. I found it and read it again, to this day I have no idea why, and hoped my husband wouldn't notice the tears which flowed just as they had done the first time I saw it.
On the Monday we went to visit a neighbour. Thomas had a slightly runny nose. Joan took him on her lap with the words 'Goodness me, Thomas, five months old and this is the first time I've had a real cuddle'. He smiled in his usual merry way.
All afternoon he slept in his pram in the garden. He had refused a feed at lunchtime. I put it down to teething. In the evening he started to whimper and lay on my shoulder. I still put it down to teething but I did look up meningitis in the medical dictionary. At that time it was not an illness given a high profile; most of us were blissfully unaware of it. But I had recently heard of a baby, born to a couple who had almost given up hope of a child of their own, who had developed meningitis at the age of six weeks and was dangerously ill. The story haunted me, especially since we ourselves had been married for 11 years before our first child was born and had known something of the heartache of apparent infertility. I couldn't get that baby out of my mind, even though the family were not local and were unknown to me personally.
Since his birth, Thomas had always slept in a Liberty-lawn-lined wicker crib beside our bed. He was just outgrowing it and I was preparing him for the transition to the big cot in his own room by putting him in there at bedtime and bringing him in to us for a feed and to sleep the remainder of the night in our room. It had only happened once and already I had felt a shudder go through me at the sight of the empty crib when I went to bed. It had made me think what it must feel like to have a cot death; the sense of separation was so appalling.
But on that fateful Bank Holiday evening I put Thomas to bed beside us in the old way. He woke for a feed at 5 a.m. Three hours later he was pale, unhappy and couldn't bear to be touched. I rang the doctor and put Thomas in the pram downstairs, beside me. It was a beautiful, hot morning. I envisaged a sun-filled day in the garden for us all.
Our GP, a gruff, ex-army doctor, approaching retirement, called. He rang Farnborough Hospital immediately and asked to speak to the paediatrician. I don't remember what he said, apart from 'I don't like the noise he's making'. An ambulance was summoned to take us straightaway.
'Is it meningitis?', I asked. 'Could be, could be', he muttered, 'there's a lot of it about'.
Matthew and Daniel, six and five years old, were left with their grannie who, luckily, had a flat at the top of our house. I grabbed a cardigan for me and a shawl for the baby and we left. It was to be three weeks before we returned home together.
Meningitis Confirmed
During the journey and on arrival Tom's eyes hardly left my face but as soon as we got into the isolation ward he started having fits. It was eleven days since his second immunisation against diptheria and tetanus but the registrar felt there was no connection with his present state. I can only cling to the hope that she was correct. A lumbar puncture revealed pneumococcal meningitis. His sparse, blonde hair was shaved and lines inserted to carry the vital antibiotics. I had to break the appalling news to my husband, John, at work.
By the evening, in great discomfort, I asked if there was somewhere I could go to express my milk. I remember the consultant paediatrician stopping in her tracks. She felt we were so very, very unlucky to have a breastfed baby in this state. And, because of the nature of Tom's illness, my milk was of no use to the Special Care Baby Unit. The only time I'd had milk to spare and it had to be poured away.
In my shock I am sure most of my questions were silly ones. How long would we be in hospital? Could the bacteria have lain dormant for some time, undetected, remembering the particularly persistent and violent headache and feverish feelings I'd suffered only two weeks after his birth? The gravity of the situation had not really sunk in. We were told that Thomas was a very sick little boy and that the next 48 hours would be critical. Irrationally, I began to feel I had somehow wished this dreadful illness on him, simply by my preoccupation with that other, unknown infant whose meningitis had so preyed on my mind.
A camp bed was made up for me in the tiny room. I must have dozed off eventually, only to be awoken in the middle of the night by the registrar expressing her concern about Tom. She had called a colleague over from Sydenham Children's Hospital; Thomas was fitting dreadfully. I asked if these fits would lead to brain damage in the future? His grave reply – 'I don't think we should be thinking too much about the future tonight' – tore at my heart. I wanted to phone my husband but was told there was no need, yet ...
Later that night, as I sat expressing more milk in an empty room along the corridor, I heard footsteps and then the voice of a nurse asking the words I'd been dreading I'd hear all day: 'Mother, has this baby been baptised?'
Oh, the relief, despite my despair, of being able to answer in the affirmative. Thomas's baptism at Beckenham Parish Church had been a joyous occasion some two months previously, attended by family, godparents, some of our dearest friends. The sun had shone. Thomas's behaviour had been just perfect. We had just had the photographs developed. The only thing that had struck me about them was how frail he looked in his long white gown. How slender his neck. How like photos of his elder brother, Matthew, at the same age. And Matthew has a mental handicap for no known reason. Were we going to see the same with Thomas?
And then I remembered Matthew's teacher in his Special Opportunity class picking up the tiny Thomas and hearing her say to him 'Well, I shan't be having you in my class I can see', so bright were his eyes and so interested his gaze even at a few weeks old. And the man who was to become Matthew's head-teacher at his junior school seeing Thomas at only two weeks old, at a National Childbirth Trust talk he gave and to which I'd struggled expressly to hear him, remarking how lucky Thomas was.
But all that positive feedback was suddenly in the past. Just part of my questioning heart during those long, lonely, anxious hours. Such silly things bugged me. The fact that, despite my best intentions, I had taken so few snapshots of Thomas's early weeks and that, in my haste to get home with him 48 hours after his birth, I had left behind his tiny hospital cot label. At the time the latter had felt like a little disappointment; now it assumed the giant proportions of an ominous portent. I could also see, in my mind's eye, the dear little shiny green mac' and sou'wester I'd bought so prematurely for him in the summer sales, to fit a two year old. Such vain things that had charmed me and must now be sacrificed.
And with a pang, as I sat there I saw Thomas in relation to others. He was my baby and the umbilical cord seemed so recently to have been cut that I could only think in terms of us two. Suddenly I saw him as John's son, the boys' brother, grandson to two doting grandmothers and I realised he was not my personal possession but part of us all. My plea, 'Oh Thomas, please don't die; I love you so much' sounded selfish when I realised he was loved and needed by us all. But at that moment it didn't help; it just made it all the worse. It wasn't just a personal grief. The enormity of the loss we were all likely to face overwhelmed me.
Back in Tom's room I eventually drifted into sleep towards dawn. It was a mistake. When I awoke, as the hospital stirred into action at 6 a.m., I thought it had all been a bad dream. I was wrong. The prostrate form in the cot convinced me it was all too horribly real.
Our rector, the Reverend David Silk, just back from a Spanish holiday, came at a friend's request and anointed Thomas with holy oil while we joined in prayers at his side. (He told me years later he had gone straight home to his wife and, in answer to her unspoken query, had shaken his head, hopelessly.) John brought Thomas's baptism candle to comfort me. It showed that he had passed 'from darkness into light' but could anything be darker than these hours?
After Father David's visit, despite constant fits, Thomas got through the day. His eyes were shut, his head seemed huge, his navel (which had never been the neatest)seemed swollen. How I longed to pump my strength back into him, as I had done for those nine happy months. I looked at the head which was so desperately paining him. 'God be in his head and in his understanding', I prayed.
The nurses would regularly proffer a damp cotton swab on a stick to refresh his parched mouth. He would seek out for it avidly, like a newborn rooting at the breast, but oh how it reminded me of a sponge soaked in vinegar and offered to another dying man ...
By the following afternoon Thomas seemed to come alive a little. To our innocent eyes his colour appeared better. The nurses let me hold him briefly and put him to the breast. I was terrified. In two days I had forgotten how it felt to hold him. And the lines from his poor head got in the way. But we took it as a good sign. The 48 hours were almost over.
It was a disappointment when the consultant paediatrician didn't share our pleasure. She still seemed worried.
An agency nurse was on special duty that night. For the first time I felt uneasy about the staffing. I could sense that the nurses going off duty shared my concern. Thomas had been 'specialled' and cot-nursed with the minimum of handling. He had not been left for a second since our arrival but when I returned from the bathroom I found him alone. I awoke in the night to his cries and found the nurse cradling him in her arms and crooning. It broke my heart; I knew how any movement increased his agony.
In the early morning the agency nurse was gone. A personal crisis at home had resulted in her immediate departure and, to my relief, a familiar staff nurse was on duty.
That morning found Thomas apparently no worse. The 48 hours had passed. Outside his room I saw the doctor brought over specially on the first night, who had then gently prepared me for the worst. This time he said confidently 'he'll be alright now'. And I believed him ...
In the afternoon I was expressing milk when John arrived. His face was ashen.
'What's the matter?' I asked. 'I've just seen Tom', was all he said. We knew then that things were not improving. We were told that the consultant wanted to see us. After what seemed like an eternity she took us into the office and asked how we were coping. Would I like Valium? I remember asking if Thomas was brain dead. We were told he was comatose. I knew this doctor was trying to prepare us for his death but she did add that sometimes things happen that we don't always understand. If only she knew, that was all we were hoping and praying for. Prayers were what I needed, not Valium.
She explained that a bed was ready for our baby in intensive care at Guy's Hospital in London if his condition made it necessary to administer even stronger drugs to kill the bacteria since they could, at the same time, depress his respiration. He would have to go on a ventilator. The staff thought we should go home but I couldn't bear the thought of leaving. Outside, the rain poured down and all we heard that afternoon was the wail of ambulance sirens.
The previous day I had been persuaded to pop home at teatime. My mother's face had lit up at her hopeful query 'Does this mean Tom is getting better?' That day I knew she and the boys were preparing a special tea. I couldn't ring anyone to ask for a lift; my grief couldn't be shared or inflicted on anyone else just then and yet I didn't want to leave Tom alone. But in the end John and I did dash home together. It was a wretched journey and I swear there were more prams than usual on the way. Or did it just seem like it?
When we reached home, I couldn't speak. The fire was on, the tea (prepared by the boys)all beautifully laid out. My mother took one look at my face and knew it was not, after all, a time for rejoicing ...
Before we returned to the hospital, I got the boys ready for bed. Daniel struggled out of a blue and white striped T-shirt that was on the tight side.
'I think I'll have to put this away for Tom', he announced, with the air of a five-year-old who has already earmarked several outgrown things for his baby brother. I froze. I couldn't let them go on thinking Thomas would be home again. I took a deep breath and explained that if God couldn't make Thomas better here on earth he would take him to heaven and look after him there for us. But that he would always be our baby and we would always talk about him, never forget him ... I was aware of a choking sound as John left the room.
'Yes' accepted Daniel, solemnly, 'and he'll come back to us when he's a big daddy, won't he?'
I took a last look at Tom's crib in our room, at his cot with the patchwork cover I'd made him in his nursery. I said goodbye on his behalf. We returned to the hospital.
Thomas was given a brain tap, to relieve the pressure. We weren't allowed near him. We sat locked together in the waiting room as rain cascaded down the windows and tears down my face.
'I can't stand it', I sobbed. But I had to, John had to and, worst of all, poor little Tom had to, too.
To make things even worse on that black Friday most of our favourite nurses went off duty for the weekend. I said goodbye to them, so certain was I that by the time they returned we would have gone home, empty-handed.
Turning Point
Despite everything Thomas got through the night. We didn't go to Guy's. And in the morning, I think towards 6 a.m., he had his last fit. After that the sun shone, the day dawned brightly and, although we didn't believe it then, he was over the worst. His godmother, Anne, and her husband raced down from Kensington as soon as they got my letter. I had unashamedly written to as many people as I could, especially those I knew were blessed with a strong faith. I so wanted their prayers for Thomas and he was named and remembered not only in our own church of St George, Beckenham, but in prayers and masses said in several parts of Kent, Sussex, Essex and Hampshire that weekend. On Sunday, while I was at the service in the little hospital chapel, weeping over the hymn lines 'Does a mother's love cease toward the child she bore?' my midwife came and left a bottle of holy water from Lourdes for us. People were so very thoughtful.
Like another mother before me, I had so much time in those dreadful days to ponder things in my heart. Little events, people, attitudes are crystallised for ever in my mind. The nurses who were so supportive to us all, as a family. Who got into trouble for becoming too involved, for ringing up on their off-duty days to check Tom's progress, who pasted bulletins about him on their doors? Where are they now, I wonder, those brilliant youngsters of August 1980? I still think of them and of the part they played in our particular history.
One of our favourites, a little Welsh nurse, was getting married and excitement was in the air. I remember the orchard outside our ward, full of pear trees, and seeing the nurses walking through it, their cloaks blowing in the wind, laughing and talking but, such was the insulation, I could hear no sound. And little did I know then that Tom never would.
And so the days passed. I became aware of the contrast between Tom's pale little body and my almost obscenely tanned hands and arms. It was quite a strain keeping up with the milk supply to be tube fed to him but, apart from praying, it was all I could do for him. There was one night when I went staggering up the corridor, bleary-eyed, only to find that it was impossible to produce anything! I was desolate until I realised I'd misread the time and it was less than an hour since the last expressing. Just as I was becoming exhausted Thomas was pronounced fit enough to feed direct (and continued to do so until he was two years and two months).
(Continues...)
Excerpted from Making Sense in Sign by Jenny Froude. Copyright © 2003 Jenny Froude. Excerpted by permission of Multilingual Matters.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Introduction
Acknowledgements
1 The Time of Crisis
2 Deafness may Result
3 Take My Hands and Let Them Move
4 Channels of Communication
5 Good Times – Bad Times
6 Coping and Caring
7 Growing Up
8 Sound or Silence?
9 Staying Strong
10 The Big Adventure
11 Language for Life
12 Borneo and Beyond
13 What is Deaf?
14 Paths to Understanding
Appendix 1: A Letter to a Deaf Son ‘Yellow is a Lovely Word to See’
Appendix 2: A Second Letter to a Deaf Son
Appendix 3: Some Useful Addresses
Appendix 4: Glossary
References
Index