Sara – Interview 8
Age at Interview:
Sara is married and has several children aged between 11-26 years. Ethnic background/nationality: Jewish White
Brief outline:Sara’s son was diagnosed with Crohn’s Disease aged 12. He’s had two Parenteral Nutrition courses and a section of diseased intestine removed. Sara felt isolated and unable to talk about her son’s illness, however she’s since found others with similar experiences.
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When we were in the hospital for surgery, I was friendly with another mother whose child was going to have the same surgery, she said she was in a school with 400 children and this child was the only one with Crohn’s. But in our schools [laughs] there are quite a few. So it’s very strange. She didn’t know anyone else with Crohn’s. Whereas I can list them one after the other so there must be something there. I don’t know what.
Shock. But I didn’t know much more than that. It had been such a traumatic few weeks. At least we had a diagnosis and there was a treatment and at the time, the doctor was very confident that you do the treatment, then he’d be fine. Now it does work sometimes like that, but it didn’t for him. So I have to say that, at that time, that timing when he was diagnosed, there was so many things happening here at home as well, we just, I don’t know how I survived it to be honest.
So okay that’s in the Synagogue, but you also have a sit down meal with a lot of people. He was sitting there [laugh] at the top table and he was eating a potato and I know this sounds really pathetic, but food becomes quite crucial, especially to a boy of thirteen and he’s sitting there, and everyone’s having a nice time and having this festive meal, and he’s sitting there eating a potato. That’s all he had, well actually he wasn’t supposed to have that, but I had to give him something to eat [laughs]. What do I do?
Then on the Tuesday, I think that was the actual anniversary date, they had arranged, and they’d been arranging it for weeks, a barbecue for us. They’d bought us a barbecue for our anniversary, you know, and so they’d arranged to have a barbecue on the Tuesday night but of course we were in hospital we came home again in time for that. And we were debating whether not to have it. That sort of thing we could have not had because of our son, but in the end, you know, he’s one child amongst everybody… I don’t know. I don’t know whether it was right or wrong. I think we probably discussed it with him. Whether he knew what he was saying or not, it was hard, that was hard. It was really. It was just, you know, family, just my immediate family, married children. It was a busy week. Busy three weeks [laughs].
And what we decided to do was just to take the headmaster into our confidence and tell him exactly what it was. He asked us what to say to the other teachers; we did not want him to tell exactly what it was. We asked that he should just say he has a stomach problem and he isn’t well and leave it at that, those that perhaps picked up what it was; fine. But I didn’t want to talk. And I think that was a sensible decision in the circumstances of our community or whatever I think that worked quite well.
So having that Rabbi explain to him, “No actually if you aren’t well and the doctor says you’ve got to not eat this, or not eat that, then that is what you’re required to do. You’re not required to keep the law.” We could tell him that, we knew that, but he is not going to listen to us, but he was able to listen to the Rabbi. And he had a lot of support from one of his teaching Rabbis in school who was very, very kind. He had a nephew with Crohn’s.
I think what, one thing that was very scary was if I’d forget or run out on the Sabbath, on the Friday. I mean that because he had nothing to eat. So if I hadn’t got, if I had to remember that I had enough of the stuff in the house on Friday, all the festivals, and some of the festivals are three days, it was like two days festival and then a Sabbath, followed by Sabbath, that means three days that I can’t go to the shops. So I couldn’t carry it on the Sabbath. So if I had run out on the Friday [laughs] that was a worry. I had to remember to have it in the house. I mean there were times or weekends that we run out and we ended up having to go off to the hospitals and get it on the Sunday, if I couldn’t get to a pharmacy that had it I would have to go to the hospitals and get it.
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