Our fifth child, Melissa, was born in 1988 and within hours of birth we were told that she had a disease called Trisomy 18–and was incompatible with life.
We were told it would be unlikely that we could take her home and if we did, she was unlikely to reach her first birthday. So we decided after a fortnight to take Melissa home to be surrounded by family and we would have happy times and make memories. The biggest challenge was how to feed her! She could not suck long enough from a bottle even with a small teat so we tried a special bottle with a spoon teat and literally spooned it into her. Isomil was finally used as she tolerated it best. The next challenge was that she would not be able to burp and end up bringing up it all and yes we just had to start again – we had no other choice. It could take hours to feed her.
Looking back, keeping her food down was our biggest challenge. For the first few months we also found we could not lie her down as she would turn blue so we held her upright when she slept and months later she had the cot head raised and that worked. We had no-one to show us how to cope we played it by ear and in fact it was Melissa who showed us what she needed. Light and heat sensitivity were an issue – she could not be out in the sun – car windows had to be darkened and windows closed in the room she was in which had blinds we used to keep the bright light off her.
There was one other family in NZ so that was helpful as at that time we had no internet. Later I found SOFT USA and UK which was wonderful. Our wee girl taught so many people about life and her story still does. As a family we were challenged and limited by her needs – we lived each day and vowed to have no regrets. Melissa lived 9 years and 7 months and had heaps of fun, many giggles and lots of memories were made. Gas fires, street fumes did not work for her.
Rainbows were a special part of her life especially when it was a difficult time – there often was a rainbow which gave us hope and helped us through. She loved playing with balloons, her swing, swimming, bike riding on an adapted bicycle through the house, listening to music, horse riding in her last year, using a computer – yes amazing. She was home schooled due to low immunity, walked with a walker and support person. Even at Melissa’s service, a rainbow was witnessed by all present and showed us as a family we had indeed cared for a special wee girl. My sweep-pea! x x