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"Bye, Jean!"

What I am going to write - what has happened – has made me the person I am today.

In this piece jean reflects on her children growing up and the changes that have taken place as they have moved to new homes.

My first daughter was born in 1979. She was breached and born with her left foot on her shoulder. She had mild brain damage. In July 1984 she was diagnosed with Wilms tumour and she died the following December. My infant son was nine months old at the time.

I went back to work three days a week. My mother looked after my son. She loved it. Nanny would be cooking lunch and he would crawl over to the kitchen door, knock, and she would call, “Come in if you’re good looking.” He would giggle and start over again.

In 1986 I had my second daughter. She was three weeks old when my son was diagnosed. He was very loving, but would have a temper tantrum seemingly for no reason. He was by this time going to a children’s centre near us. I had a phone call from the Sister asking if my husband and I would come to the centre as our doctor wanted to see us. We were shown into a small room. Since losing our daughter I have related small room to bad news. The doctor said that as our son was not progressing much he thought having a blood test would eliminate things. He didn’t expect it to come up with Fragile X. He didn’t know much about it. I started to blame myself. He told me never to blame myself – it was not my fault.

Wanting answers, I wrote to the doctor in Great Ormond Street Hospital who my daughter was under, explaining to him what we had been told. He wrote back, saying he hoped I didn’t mind, but he had passed my letter on to a Prof Pembrey. He was very good. He said our son had the classic features of Fragile X.

Apparently I was diagnosed with MS in 1981, after a mylogram. Nothing was said to me until I started asking questions in 1987. My husband left me in 1990. Suddenly I was by myself with two young children, no money and a mortgage to pay for. I had to go onto income support.

Then the children, Nanny and I started to see Prof Pembrey in Colchester Hospital. After blood tests we were told Nanny was ok. I was a carrier of premutation Fragile X. My son and daughter both had the premutation Fragile X. I thought, “Oh well that can’t be helped. It’s one of those things. Cope with it.” Apparently my late father passed it onto me. He got it from his mother who in turn got it from her father.

My son didn’t start to talk until he was about three years old. In the meantime he heard people calling me Jean. So his first word wasn’t Mummy, but Jean. I thought, “Well that’s my name”, and left it. He still calls me Jean. On one occasion when Nanny saw my son she said, “Hello, cocker”. From that day he called her Cocker Nan. Later it was just Cocker. They were very close, right up to when she died in 2004. After that he has never used the word Cocker – only Nan.

One night when my daughter was five years old and I went into her bedroom to check on her I looked in the cot and she was having a seizure. She was on her back and started being sick. I turned her over to her front in my arms, took her downstairs, rang the surgery and by luck our own doctor was on duty. He came straight round and sat with her for some time. That was the start of her tempral lobe fits.

I was told by my son’s special school when he was fourteen years old that he would never read or write. My daughter now cannot read, but though she doesn’t know what she has written she can copy words from a book very neatly. She can draw and colour beautifully.

My son and daughter went to the same school. When my son was eighteen years old we were being asked to let our children go to Res College. I said no. I could see he wasn’t ready to leave home yet. With my daughter she was ready, so I let her go. She had a lovely time. When she finished there a place was found for her in South Ockendon, where she still is. She has her own room and own walk-in shower. She is taken out every day and goes to college and clubs.

My son, I took him to several places to see if he liked them. He just walked back out of the front door. I thought, “Oh well, he isn’t ready yet.” People kept asking him why he was still living at home. I thought, “Because he isn’t ready to move on.”

I used to take my son swimming every Friday morning. I encouraged him to swim ahead of me. As he swam he was grumbling, “Silly woman, nasty woman,“ then very loudly, so people nearby looked, “Unkind woman!” I had to laugh. When I caught him up and swam next to him he said, “Alright, Jean?” My daughter is a lovely swimmer. She glides along doing breast stroke, hardly a ripple in the water.

When my son reached thirty years of age he started getting very difficult. I knew he was ready to move on. I was told of a place not far away by a couple of carers, so I made arrangements to take him over to have a look. He looked and said to me, “My room, Jean - moving.” I thought, “That’s it – found the place.”

The day he moved, the bedroom furniture came down the stairs and I went into the kitchen and had a cry. Then I wiped my eyes and went over to do the signing of the papers. I said to my son that I was going now. He followed me to the front door. I stepped outside and turned to him. He said, “Bye, Jean”, and shut the door. I knew then that it was the place for him.

It’s very quiet indoors. I still miss them. It’s been four years since my son left. My daughter rings me every four weeks or so – she gets “homesick” and wants to come home for a few days. I take her out and about and then take her back.

I still feel “lost”, so to speak. I was always on the go doing things with them; now nothing. I go out every day and see a friend for coffee etc. My life is totally different now, but I really enjoyed the challenge and looking after my son and daughter.


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