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Forever Baby: Jenny’s Story - A Mother’s Diary
Mary Burbidge
“I have a darling baby. A patient placid baby who nuzzles warmly into her sheepskin and gives me a sleepy smile when I come in. She sits up, bounces happily and reaches out for a cuddle …”“I’ve had my darling baby for nearly twenty years now and unless something happens, I guess I’ll have her for another twenty years.”Praise for Forever Baby –“Mary’s writing has the quality of being both a participant and an observer. As a participant in a life and death voyage, she writes with emotional force. As an observer, there are some great passages of acute observation and stark – sometimes black – humour.“But the dominant emotion is love: love given by Mary and the Burbidge Family to their daughter Jenny; love given by Jenny to Mary and family. A special love for a special child, which we are privileged, through this book, to share.”The Hon. Joan Kirner, former Premier of Victoria“Some people just burn with a brighter flame, and Mary Burbidge, doctor, mother and fierce diarist, is one of them. When Mary gave birth over twenty years ago to a disabled baby girl, she began writing from the heart to make sense and meaning of her life.“I have quoted Mary’s experience in one of my own books, but I could never have suspected the dramatic turn of events that would conclude this story. The gritty, heart-bursting world of parenting is captured in a way that I have rarely met elsewhere, but the drama, transcendence and tragedy of raising a child with a disability takes this to a deeper plane still.“Jenny’s story and Mary’s telling of it, will grip the reader and change how they see the world around them for a very long time.”Steve Biddulph, psychologist and author
FOREVERbaby
JENNY’S STORY - A MOTHER’S DIARY
Mary Burbidge
Copyright (#ulink_d8589fc8-fd16-549b-b27d-d4e36d5530d8)
Certain details in this story, including names, places and dates, have been changed to protect the family’s privacy.
HarperCollinsPublishers
77-85 Fulham Palace Road,
Hammersmith, London W6 8JB
www.harpercollins.co.uk (http://www.harpercollins.co.uk)
First published by Pan Macmillan Australia 1997
© Mary Burbidge 1997, 2001, 2013
A catalogue record of this book is available from the British Library
While every effort has been made to trace the owners of copyright material reproduced herein and secure permissions, the publishers would like to apologise for any omissions and will be pleased to incorporate missing acknowledgements in any future edition of this book.
Mary Burbidge asserts the moral right to be identified as the author of this work
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Ebook Edition © NOVEMBER 2014 ISBN: 9780007549115
Version: 2014-11-19
Contents
Cover (#u78d2839d-9f4f-5977-843d-37ce37130807)
Title Page (#ub347e04c-93a1-5d37-b4ca-fe74ebacc38a)
Copyright (#ulink_af04f2ef-d125-5d6e-b115-e1d24cff50ed)
Author’s Notes (#ulink_f61deef6-40ad-5be1-b2cc-9c675e658295)
Introductions (#ulink_61c7b911-a9d8-54b0-a403-43cc5f6a04a1)
Part One – Looking back to ‘before’ (1990 – 1995)
Photographs – The way we were (1974 – 1995) (#ulink_02ffc46f-aafe-5ce1-a3d5-c557ca7d8c09)
Part Two – Volume Twenty-four (March to May 1995)
Chapter 1 (#ulink_0f64cb52-0c80-5a49-a56b-8f0595da4e1e)
Chapter 2 (#ulink_860da3fd-fc67-5492-85bc-dacc7fd0fb9e)
Chapter 3 (#ulink_0b68748d-2aff-5631-aa84-3e914b90aa84)
Chapter 4 (#ulink_d79220aa-a980-5dbb-b12a-60328530b52d)
Chapter 5 (#ulink_109bbae3-c344-567c-9ae2-2c3d9795fb3d)
Chapter 6 (#ulink_1f1ec187-4794-5e05-9300-efa4df854c45)
Chapter 7 (#ulink_016b64b2-4931-5cd4-8804-55ec71918f51)
Chapter 8 (#ulink_a80def12-4d17-552d-a568-f32a95aa37b7)
Chapter 9 (#ulink_eab64ec6-a06c-5f90-89c7-7a888e0672e7)
Chapter 10 (#ulink_fbf66fa2-d8ac-50b4-b9b6-724f8671a128)
Chapter 11 (#ulink_9fad2e6d-461f-5289-9917-710677a85cfc)
Chapter 12 (#ulink_ba2bf111-9e84-5891-989c-5ca37e19c496)
Chapter 13 (#ulink_f2b30cc1-337f-5359-b336-8546bd31f628)
Chapter 14 (#ulink_696f853c-e124-5ad1-8ae7-8a3dcba79798)
Chapter 15 (#ulink_842ffebf-2692-5e4c-a82e-0eec2386a7ac)
Chapter 16 (#ulink_7aa3249b-1032-59c3-bbfe-94b1af0b11b5)
Chapter 17 (#ulink_e024e78f-e102-5419-ac9b-439bb619c31d)
Chapter 18 (#ulink_4eaf471b-45b5-5a17-ad0e-dbfbf2c90ac0)
Chapter 19 (#ulink_c37a8529-10c2-5af4-8fb3-f6d7ace0aebf)
Chapter 20 (#ulink_2e78625f-7fc8-5407-801f-8ec0732fdb5a)
Chapter 21 (#ulink_f12209b1-a610-54e8-8ca7-d1570e6a4ce2)
Chapter 22 (#ulink_0d8e3161-fec9-56db-ad32-918420dd65fd)
Chapter 23 (#ulink_377460a4-c449-58f9-9a5b-85cb3336f228)
Chapter 24 (#ulink_5ba61ce1-f698-54e6-ae73-ce8004a538f8)
Chapter 25 (#ulink_0c8ed801-4009-5928-b835-848abe2942ce)
Chapter 26 (#ulink_8eb4af93-1ea5-57de-b8b3-5baaf56d8ca3)
Chapter 27 (#ulink_91f5a121-0675-5d2c-97e2-a5c629df41a8)
Chapter 28 (#ulink_22b042cd-3252-56d8-94eb-44fc6c5e7e6d)
Chapter 29 (#ulink_5a230e10-a392-58c8-a7fe-c02e2e1ff0d6)
Chapter 30 (#ulink_0757e44a-7012-5754-947e-8fbbe309c20d)
Chapter 31 (#ulink_e77d5a93-8f2c-57a1-88c0-143a00a3b39e)
Chapter 32 (#ulink_a07dba52-b5e5-5a8f-98da-0b50a83ec475)
Chapter 33 (#ulink_273a679f-532d-566d-b25c-d2dbb90a0df4)
Chapter 34 (#ulink_ac86b72a-29ad-5a1f-9b03-a8c1d68c77e6)
Chapter 35 (#ulink_38352e37-b3d3-521b-9ea6-f4a8e445dea4)
Chapter 36 (#ulink_d7948e22-1717-56f6-baba-a8569679bd94)
Chapter 37 (#ulink_1650e4f7-b837-5ea5-8061-6613477bbb54)
Chapter 38 (#ulink_fcbe5300-e530-591f-8c7e-573e550bbd23)
Chapter 39 (#ulink_0793d9a6-0662-5cb8-ac48-dfb149b07b40)
Chapter 40 (#ulink_619ca7ae-bc05-5ae6-a267-448c6e73273b)
Chapter 41 (#ulink_562b9d96-965a-528b-ba9c-4bc98368196f)
Chapter 42 (#ulink_5fd713d2-ffa0-5717-bcb8-f50b81d53dfa)
Chapter 43 (#ulink_f9dcbffe-8e5d-517a-8cfa-29f193029a26)
Chapter 44 (#ulink_eaf907d8-3c71-5342-bc16-3f038f9ef604)
Chapter 45 (#ulink_885b256a-0be4-5170-89d7-fe5f29b2e575)
Chapter 46 (#ulink_2cb9736b-10a5-594c-bf01-7101d7a09d1c)
Chapter 47 (#ulink_fc494e6b-0776-5ae3-9188-f984113d1aaf)
Chapter 48 (#ulink_ac522b6d-a269-5e22-82b3-bcdb2478f809)
Chapter 49 (#ulink_b7d095d3-09f2-5416-be1e-bdbed706777d)
Chapter 50 (#ulink_e6b471d6-3794-5199-8595-902b7601ed81)
Chapter 51 (#ulink_06141783-4f57-5eab-a8af-468831654060)
Chapter 52 (#ulink_a8e5a079-adea-5fdf-a987-a3ec612f85d7)
Chapter 53 (#ulink_5cb38554-c9a9-5c9d-b33e-ecd7198034d6)
Chapter 54 (#ulink_c6ccfcbd-62b8-5db7-93ec-4b169897af1e)
Chapter 55 (#ulink_24943a1d-dbec-5d9d-89b9-fa924817c888)
Chapter 56 (#ulink_47a1edfc-8ded-58fb-83b8-30106381daf5)
Chapter 57 (#ulink_04c1478a-2c16-5fe6-8de5-c6549c43db3d)
Chapter 58 (#ulink_947c4fe7-6a79-5db1-a528-a055c57d5804)
Chapter 59 (#ulink_4a340182-d037-54b6-bf1a-c286ac7ce274)
End note (#ulink_194ddf3f-8ba4-547d-b730-f7905394f54e)
Names, Organisations and Acronyms (#ulink_bc56f9e7-fb58-5da9-a80a-ceaaf4602eca)
Photographs – The way we are (#ulink_e077b4a8-866e-596c-9e21-2414f73d07a9)
Acknowledgements (#ulink_10d9fd5f-a537-5e56-b9bf-6699ac1a42fd)
About the Author (#ulink_e95baa88-2208-5a4e-83ee-f56f6ca5910f)
About the Publisher (#ulink_495e178d-dd26-5290-8963-68989220e31f)
Author’s Notes (#ulink_5ac1c836-cd14-512e-8e24-4798745f34a7)
On Truth and Diary Writing
It might be assumed that what is written in a diary is true. What would be the point of recording an untrue account of the day’s events? (Unless of course you were a Machiavellian type with nefarious motives.) So yes, my diary is a true record of my day, each day, as it happened.
The truth. But not the whole truth; I’d be up all night if I set out to record everything that happened each day. A diary is a selective account - a moment can expand to pages when everything it meant is written down; long hours can be dismissed in a word, or less.
The truth. But not nothing but the truth. There’s what happened; and then there’s all the rest - how I felt about it, what I think it means, or could mean, for me, for others. Interpretation, elaboration, speculation, recrimination, extrapolation and commentary all embellish the event.
This is a true story, written day by day in my diary, volume twenty-one of thirty-seven (so far), but it is my truth, coloured by my perceptions of what was important for me to record, at that time, on that day. How I saw something then is not necessarily how it would appear to another observer, or how it would appear to me at another time. It is the truth of that moment.
