Fighting Chance

May was Cystic Fibrosis Awareness month here in SA as well as in many other countries overseas, and this year I have eased off on the awareness for many reasons, one of them being that I feel I am preaching to the same few people who know me and us as a family and those who really do care. 'Cystic Fibrosis' is a small percentage of population here and year after year it is the same old thing with very little impact. You know mankind is a very strange creature and so often it is only when affected by something in a personal capacity that they ever stop to think what someone may be going through.

When Mark was still alive I never said much to anyone about Cystic Fibrosis and not many ever asked about him or what was wrong with him. It was almost as if they didn't want to know. I remember at one point there was a rumour going around his school that he actually had AIDS..... I mean really, how ignorant were those that thought that or even said it.

With NiQi it has been different. She has lived longer, her struggles have been different and she dreams of a life...a real life where she can party with the best of them, stay up late, take long walks on the beach, do endurance riding on her horse, play netball again and just chill like everyone else her age.

Since her trust fund was started a few years ago, it has been CF, CF, CF.... so much so that I now feel that our friends and relatives don't want to keep hearing about  fundraising for her, so I have decided to step back and just let it be.

Since starting with our baking, my life has become busier with orders as well as the markets. Cupcakes have become our speciality but I don't ever say 'No' to an order. If I have to stay up all night to make a baking creation, I will do so.

One of my friends from school has been really kind ordering cakes from us for the children at her school. I made two cakes for her recently and when she came to collect them she asked about NiQi, as she always does. I told her that it has not been going well which led her to ask more about waiting on the transplant list. I explained the process but was reminded and told her, about NiQi when she was signing the Living Will forms. She sat for ages just staring at the paper in front of her, pen in hand, not doing anything else. Suddenly she turned to me and with tears streaming down her face, she said to me: 'promise me you will give me a fighting chance, promise me you won't just switch off the machines without letting me fight first.' I promised just that and with a lump in my throat I turned my back on her so she would not see how much it grieved me that she had to think about dying when she hasn't really lived. Our daily life revolves around CF.... some days it is minimal and others massive....it never ever leaves us, we do not get a break.