A Grandmother’s Tale

When we knew that we were expecting a girl, I made the biggest nappy cake ever. It was 3 layers, 96 nappies and everything a girl would need from socks that said, ‘I’m Wild’ to leopard skin sun glasses and disco boppers, frilly pants and bibs, and cuddly sheep.  Getting it on the train was a two person job but my son and I had prepared for this.

I knew as soon as I saw Grace that there was something, not quite right but put that down to the fact that it had been a difficult delivery, after all her own mother had been born with a yellow face and almost triangular head from the forceps. Still there was that little niggling doubt.

Half way through the visit a midwife came in, did not ask who we were and measured Graces head announcing it to be ‘31 cms’. We asked what that meant and she said ‘she’s retarded’ and left the room.

I went after her and said we wanted a full explanation and to see the consultant, she didn’t seem able to offer anything at all, not an explanation, reassurance or a consultant. She seemed oblivious of the distress her announcement had caused.

We had to travel home that same day due to work commitments and when we changed trains at Exeter, I saw a former colleague who had been a midwife for many years, she was astonished at what had happened and disbelieving that a head measurement could precipitate such a devastating announcement, without a consultant present.

I felt vaguely reassured but still had seen something in the symmetry of Grace’s face that worried me.

There were tests and eventually a diagnosis.

The heart-breaking news came to me in a phone call from my daughter, just at the moment that, a couple from France had come to view my house. I stood on my doorstep crying holding hands with a total stranger.

I had never heard of WHS.

I began to ring friends and my son was already researching on the internet.  All we could find seemed very cold and daunting and without any hope for the future.

What saved us in those early days was love for Grace and a wonderful site in America with a letter for new parents on. It was an impassioned cry for our children not to be ‘written off by professionals’ and it was solace which was badly needed.

It showed us the achievements made by WHS children and some adults and gradually we began to form a different view of the problems and the future.

It is one of the reasons for the ‘in balance’ part of the title of this site, life is not without hope, it is a serious diagnosis but there is a life however fragile to be lived.

The professionals involved with us have been a very mixed bunch, we have had everything from the initial midwife’s insolent and damaging diagnosis to the kindness of the physiotherapist who always had faith in Grace.

We have had a council occupational therapist who told us that she just needed to be ‘kept clean in her cot’ and that ‘quality of life was not an issue’.

People seemed so quick to write Grace off.

She is a tiny girl, determined, charming, enchanting.

She has a dog and a cat, siblings, she has swings in the garden, she loves stories (heaven help the reader who turns over two pages) she loves dressing up games, she has been to the zoo and the sea-side, she goes to the park and theme parks. She enjoys life.

We tailor things to fit her needs, she could not have a more devoted family, from her parents and grandparents to her uncles and aunts, we are all here for her, ready to carry her about and play games.

We will forever fight her corner.

She wears her sunglasses and disco bonkers, socks that say ‘I’m wild’ and leopard skin leggings and sparkly shoes, party frocks and pricey coats. She has been a bridesmaid and on television.

It may not have been the life we would have chosen for her but ‘on balance’ it is so much more, than we were told she could have.

Love and courage make all the difference.