The Children's Sunshine Home

Families

My sister Caroline

Caroline is the youngest of four, she's the first mentally handicapped family member on either side of the family and her arrival was akin to a bomb going off within our family. I think that's the best way to describe the arrival of a mentally handicapped baby into your home. Because she looked quite like any other newborn baby it wasn't clear just how handicapped she was and really the first 2 years were filled with tests, hospitals and doctors. You don't get to have the happy excited time with the new baby in your family, it was difficult and nobody could give any definitive answers to the extent of the handicap because they just didn't know. We had no experience of mental handicap and I remember it as a frightening time.

When she was born one doctor said to my Mum 'your daughter's a vegetable, my advice is to leave the hospital without her and don't look back'. He didn't know my Mum though, she put him straight and I'd be surprised if he ever said that to another new mother again. Another doctor told us that her body wouldn't grow with her organs and that ultimately her chest would crush her heart and she'd die of a heart attack. Somebody else gave her a life expectancy of 3 or 4, when she reached that age they said 12 and when she reached the age of 12 they decided to shut up about that topic. I like to think that Caroline decides that for herself, she can't decide too much in her life but she can decide whether to breathe.

Caroline celebrated her 21st birthday last June and this year is competing at the Special Olympics in Belfast as part of the Sunshine Homes Team. As my brother has played for Ireland on the Irish Ice Hockey Team and my other sister has driven Formula 1 cars that makes me the only member of our family who's not a trained athlete.

I remember when my brother was about 9 or 10 years old Mum bought tickets to the Harlem Globetrotters at the National Basketball arena, he asked her 'As my birthday present let's not sit in the wheelchair section'. He wanted to sit with everyone else and just be normal for the day. I think I realised then that having a sister like Caroline does make everything different all the time.

We've had to confront so much because the ongoing illnesses bring up the issue of death and also quality of life. I think people with severely mentally & physically handicapped family members live with life & death in much sharper focus than normal people, it's not a blurry concept it's a definite reality, as it is really for everyone but a fragile family member keeps it closer than usual.

The Childrens Sunshine Home cares for my sister, they provide her with a home and look after all her needs, its hard to define what an amazing thing that is. On a really mundane level they know to start phone calls with 'Everything's alright here... we were just wondering if you received such and such a form... When I see their phone number come up my first thought is whether Caroline's sick and needs to go to hospital. It's sensitive that they put your mind at rest immediately. Or if it is the worst and Caroline's hospital bound they support us.

My wish for Caroline. that she lives a full and happy and healthy life.

Thoughts about my little sister by Clare