Life with Elizabeth…
a life of ups and downs
Written and sent in by Elizabeth’s mum, Jane
When Elizabeth was born – as soon as Elizabeth was born – I knew one day I would write about her life, our life as a family. To that end, I kept a diary and much correspondence relating to her but how does one begin? Unsurprisingly, I began at the beginning. A year later, I concluded my book and am in the process of seeking a publisher, but I realise that that is unlikely to happen.
Let me share with you a summary: we are a family of five. Elizabeth is the middle child. She isn’t able to read or count, and doesn’t speak well, but uses Makaton skilfully of which she is justly proud. Elizabeth works carefully, albeit slowly, sewing her imaginative creations within the Textiles Department at The Grange where she resides. A highlight in recent years was her winning the Mencap Christmas Card Competition where her drawing of Father Christmas coming down the chimney had been animated and turned into an e-card. She is fascinated by technology, which she uses well – in spite of being too heavy handed and things never seeming to last.
Children’s Services were second to none, but life has seemed a constant battle since Elizabeth attained the age of 19 and fell under the umbrella of Adult Services. I fully appreciate why; every service is severely strapped for funding in these times of austerity.
The years have brought their share of joy and laughter as well as pain and tears. Lots of both.
From the laughter generated by the pretty, wee angel in the nursery nativity who made faces at me in an attempt to gain my attention; the beautiful bridesmaid, aged 12, dressed in pink (which, incidentally, was the last dress she ever agreed to wear), to the horror of her going AWOL at Frensham Ponds for two hours; ‘camping’ alone in a bedroom that saw two fire engines and an ambulance at our door, and the sheer helplessness I felt at witnessing the agony and sheer fright she endured following broken limbs and corrective surgery to her feet.
The Down’s Syndrome Association printed two short articles that I submitted over the years. The first was in response to a heartening piece written by Elaine Bull (Bull, E.1998) in her extraordinary pursuit of gleaning information that would enhance her granddaughter’s life’s opportunities. Such a remarkable grandmother in complete contrast to Elizabeth’s. Suffice to say, there were times when I felt completely alone with a husband who needed to work such long hours and an indifferent extended family. Her brothers were – and are – such a help to me. The second was an account of Elizabeth’s musical performance at the mainstream school she attended one day a week to access music and art. What an unforgettable evening that was. (Taoka, J. 1999).
After school, Elizabeth attended the RNIB in Redhill and was offered a residential place there when she left but funding could not be obtained in spite of a lengthy fight with Social Services and my attempts to enlist the help of our MP and the local newspaper. Elizabeth eventually accepted a place at The Grange in Bookham and, with hindsight, how well that has turned out. A remarkable place with remarkable staff and where Elizabeth is truly happy.
As I write this, my granddaughter comes and sits on my lap asking what I am doing. As I tell her the tears fall. The pain is still so great. I can relive those early days as though it happened yesterday. But love conquerors all, yes?
So, I include here the first pages of Chapter 1 and the Epilogue. You will have to read the book if you want to know more.
CHAPTER ONE
The Journey Begins
25th February 2016: Elizabeth’s 34th birthday. “No thank you. I don’t want to come home for dinner. I’m having a takeaway with my friends.” So it is that Ryosuke and I, her parents, join her at her home, a residential establishment for adults with a range of learning disabilities, taking the ‘Frozen’ iPad cover with us that she has requested as a present. My heart rejoices to see her so content.
The advice from some well-meaning friends is not to attempt this story for I cannot conceal the anguish I feel as memories engulf me; but this is a need deep within. Better to try to forget, eh? There have been those who said that if I had stronger faith, it would not be necessary. I do gratefully accept God’s gift of this precious child but the pain is, nonetheless, real.
More positively, a concerned friend wrote: ‘Perhaps we need to do this with painful and unbearable memories.’ Another confided: ‘We don’t stand in the same shoes but we stand in similar ones. I hope you carry on (writing). Those memories do, indeed, come flooding back as if it all happened yesterday (but) I am not one to deny my feelings; I’d rather face them head on.’ Bless you, dear friends, for your understanding. The brief spell of sunshine today has gone. Now cold and grey. Bit like life really, is it not?
Good times, better times, difficult times, sad times, times when one barely copes. But love. Love has to be the glue that binds all together and gives one the strength to soldier on. And Elizabeth, my darlin’ girl, I love.
Tears well up in my eyes, all these many years later, as I read the diary I kept surrounding Elizabeth’s birth. Always this conflict of sorrow and joy. Mostly people do not grasp why. Such comments as, ’Oh, she is so sweet’ were often met with, “Yes, I have her suitcase in the car. Do you want her?” People rarely know how to react to my acerbic wit. Why should they? Probably believe me to be heartless and cruel so let us clear up this matter before we continue. I do have a black sense of humour. Always have had but, as suggested by Gilbert in ‘Mental Handicap,’ a book reviewed in the Down’s Syndrome Association news, there is recognition that ‘…some couples overcame their problems with a brand of ironic humour that comes in adversity’ (Community Care: 1986).
How does one convince professionals that all is not well with a pregnancy? True, I had suffered three miscarriages but we had a beautiful little boy and there was really no reason why this baby should not be fine too. This baby was very small and I was admitted to hospital ‘for rest’ for 12, boring days prior to the birth. The months of concern manifested itself in the copious tears I wept the day before Elizabeth was born to be told not to be concerned at all. The birth was easy and when my beautiful little girl, all 5lb 2oz of her, was given to me to hold at 1.25pm. I noted and commented upon her long, slim fingers, very pleased she had not inherited my large, work-worn digits. How wonderful was life, was that moment. Of course, as she grew, her little hands developed the characteristics of the syndrome, being short and stubby.
At 6.00am the following morning, I go to see my precious bundle in Special Care where she has been placed because of her jaundice. I am given her to hold. I sit staring down at her as she rests on my lap, her tiny feet against my tummy. What is it about her that troubles me? Why this feeling of disquiet? I turn her head and my world crumbles about me. “She looks like she has Down’s syndrome,” I exclaim to no one in particular but the nursing auxiliary who is in the room leaves speedily, without a word, confirming my fears. Keep calm. Is she? Isn’t she? A nursing officer appears at my side within seconds. “You have a worry, dear? What do you suspect is wrong? She has a sweet face, a perfect little nose.” She suggests I might like to talk to a paediatrician. I certainly do but the very advice only confirms my fears. I sit and sob, rocking Elizabeth in my arms. At 8.30am I take some expressed milk to find the paediatrician is already there checking every baby but mine. The nurse tactfully removes everyone else from the room and I sit quietly, feeling sorry for this young man who must surely find the words to tell me what I dread to hear. “What do you think is wrong with her?” he asks, avoiding my eye. Are doctors trained for this moment, I wonder? Well, he cannot say there is nothing wrong and advises me to see the consultant paediatrician in the afternoon. I sit alone for a long time just holding my tiny baby and pondering her future. Periodically, the concerned, lined face of an elderly nurse is to be seen peeping over the high glass partition. Our eyes meet fleetingly. I cannot smile; she comes to me. She assures me that there is nothing in Elizabeth’s notes to indicate that there is a problem. Already she has contacted the ward. I return to the ward, my mind in turmoil, to find my bed has hastily been moved to a side room. I would rather have stayed in the main ward. Now I am alone. Quite alone. I shower and wash my hair. Keep calm. Keep busy.
Ryosuke arrives at 11.00am. I hear his voice along the corridor enquiring about me. “Your wife is in the end room.” Nothing more. No hint of what may be wrong. Are nurses trained for this moment? I hasten along the corridor to meet him. I smile. What can I say? How can I tell him? He sees my red-rimmed eyes and ashen face; his face shows concern. We begin our walk back to my room. Two steps. “I think our daughter has Down’s syndrome. Do you know what that means? You know. Like Cousin Bridget.” He is quiet.
We reach the room but immediately go to Special Care to see Elizabeth. We have the office to ourselves. Our concern is for Edward, our little son who celebrated his second birthday only days before. How will this impact upon him? Neither of us want our daughter, not like this. This thought remains unspoken as yet and completely conflicts with the love I feel in my heart.
We wander back to the ward. I cannot face lunch. Before long we wander down to Special Care again, too restless to sit, and simply hold Elizabeth till her next feed. The kindly midwife who had delivered Elizabeth comes, which we appreciate greatly. What can we talk about? Well, she is going to Scotland for her holiday. Will the consultant never arrive? Life goes on.
At 4.00pm Dr Ransley, the consultant paediatrician, appears. I register surprise upon seeing her. What did I expect? Not this kindly, middle-aged lady handling the form of my tiny, naked daughter, lifting her limbs and turning her over. She looks up and smiles. “Well, you’ve set me a puzzle. If you were both English, I would have no doubt but being Anglo-Japanese, I’m not sure.” Ryosuke comments, “She looks just like Edward did to me. I can’t see it at all.” Dr Ransley has concerns about the length of the upper bones of her limbs, not the jaw line and back of her head that I feel shout ‘Down’s syndrome’. “Her ears are low but she doesn’t have the palmar creases in her hands.” She hands me our baby to dress but I do not reach out for her. Dr Ransley quietly begins to dress Elizabeth herself. “I think you’re probably right in your assumption, however; we’ll do a chromosome test anyway. You’re most unusual in having voiced your suspicions. Most people would not, you know.” This last comment pleases me. I do not understand why. Dr Ransley offers me our baby again. This time I take her and hug her to me, tears streaming down my face. “In the meantime, I’ll put you in touch with my social worker, Mrs Foreman.” I nod gratefully but a voice inside is saying, ‘Aren’t social workers for those with problems?’ We walk back to the ward, Ryosuke kisses me goodbye until evening visiting. Now alone, I telephone my down-to earth Auntie Phil, whom I love. “You’ll love her just the same,” she says.
EPILOGUE
2020: What a Year to Remember 
Elizabeth’s dreams seemed to have all come true within the space of three months. Her bedroom at The Grange had been completely redecorated with the new carpet of her choice. (The old one being of indeterminate age.) We took her to Bluewater Shopping Centre where she chose a pretty, floral linen fabric, in muted colours, for curtains that I made. We bought new bed linen and towels.
The very next day, with her room completely finished, The Grange went into total lockdown. COVID-19. Who among us could have foreseen the misery and disruption this dreaded disease would leave in its wake and for so long? The precautions taken by The Grange, however, kept the virus at bay for such a long time. A remarkable achievement considering the extent of the site that offers both supported and residential living.
On 18th December, Elizabeth had come home for the Christmas and New Year holidays. The following day, in spite of the strict precautions, we were informed that COVID-19 had surreptitiously and silently gained a foothold within The Grange. Seven weeks later, Elizabeth continued to remain at home awaiting the ‘all clear’ so she would be permitted to return. In all this time she had been living out of her suitcase, refusing to unpack and ready ‘for the off’. Periodically, I found her sad with tears in her eyes. She missed her friends. She missed the staff. She missed her home. With a few days’ notice, Elizabeth received her vaccination on the 5th February and was able to return.
This speaks to me of the fragility of life, that we have all experienced both globally and personally, not just in this past year, but the ongoing effects too. Just when, as parents, we felt Elizabeth’s future, as far as our responsibility goes, seemed to have some security, the Coronavirus throws up so many imponderables. However, looking at the situation more positively, the hope is that the Coronavirus vaccination will soon change all our lives for the better. Whilst it was a joy to have Elizabeth with us, I realise afresh how important it is for Elizabeth to have continuity in her life, her settled lifestyle and how much she missed The Grange, her home. This has reinforced my own relief and belief that Elizabeth will be in a safe environment and will, we must simply trust, be cared for when we, as parents, will be no more.
25th February 2021: Elizabeth’s 39th birthday and time to celebrate with her friends – even if we are not permitted on site to join the party. So, to go full circle, Elizabeth, came to us as a beloved daughter, albeit with unexpected needs. She remains as such;
She has taught me, indeed has taught us all as a family, so much about what is really important in life – not material possessions, not even health but that every person is precious.
References:
Bull, E. (1998) ‘The First 12 Months – According to Grandma’, Down’s Syndrome Association Newsletter Winter 1998, 12-13.
Community Care 1986) in Down’s Syndrome Association News, September 1986 Issue No 46, 10.
Taoka, J. (1999) ‘The First Seventeen (well, almost) Years According to a Grandma-less Little Girl’, Down’s Syndrome Association Newsletter, Spring 1999, 24.