When NiQi was a little girl she was really healthy, in fact she was so healthy that her paediatrician wondered at some stage whether she really did have cystic fibrosis. It was good for us as her parents to see that she was doing so well but I often wondered whether Mark's late diagnosis had contributed to the fact that he remained sick all the time...why did he suffer so much more than NiQi and was I a bad parent to him? Could I have done more? I think to my dying day I will ask myself those questions and if so I pray the Lord will forgive me for not doing my best.
The last school photo we had taken of Mark...the best year of his life after starting on Pulmozyme
NiQi aged 11
As NiQi became older, I would look at her and wonder if she is one of the lucky ones...those who present with very mild symptoms, but the closer she got to reaching the age of 9, the more I became obsessed with the thought that she wouldn't make it passed this age. Mark had been 9 when he passed away and I began to think that she would too. It was a terrible year for me and once she celebrated her tenth birthday, I began to breathe and recognize that there may yet be hope for her to reach adulthood. Thinking back now I realize how silly I was, and though I never told anyone, until now, it was for me a bleak time in my life.
When NiQi was 20 I had a dream one night that was so vivid I woke crying. I dreamed NiQi would not celebrate her 21st and in tears I told Johan of my dream. It was a bad year for her health wise and the times of being healthy between infections were becoming shorter and shorter. I think NiQi at some point must have thought me a pain in the butt because all day every day I would be nagging... I still nag and she still rolls her eyes at me, but we have a special relationship where she knows that I nag because I care for and love her.
Well she made it past her 21st and she recently celebrated her 23rd birthday and these days we live in hope and have faith that one day she will get new lungs.
Ever since I became a mother I have fought for my children, for the fairness in life, for them to be seen for who they are and to be treated with respect. Matthew, our first born was an absolute angel...he was a model baby and it was because of this that we were so keen to have more children. Being the oldest grand child and cousin in the family came with a lot of responsibility for him. Everyone expected him to be perfect and to look after everyone else and if things went wrong or something happened, Matthew became the scapegoat. His shoulders grew broad from a very young age and because of who I am I always found I was protecting him from others. He had a very tough childhood in many aspects but I pray it has made him stronger and he hasn't grown up bitter...I don't think so as he has a heart the size of an ocean, so big and so wide...he cares for everyone and tries hard to please them all. When he lost Mark, his brother and best friend, he was devastated. I will never forget the morning he and NiQi woke and Johan and I told them both that Mark had gone to be with Jesus in Heaven during the night, how he cried and repeated 'no, no, no' over and over, hitting the wall next to his bed with his young fist. It was one of the worst moments in my life, one I wont easily forget and one I wish I had been able to protect him from forever.
Matthew, Johan and NiQi - 2005
So you see for almost 30 years now I have been fighting for my children and I always will. When NiQi stopped working last year in July because she was so ill and was more in hospital than she was at home, we decided to apply for a disability grant for her. We have always been tax payers and contributed to the economy of this country and the doctors egged us on...why not, she deserves to be given a chance too. It didn't happen over night and it didn't happen without a struggle. she had to stand in a queue with her oxygen just like everyone else. she wasn't given preferential treatment and even after seeing the first district surgeon who denied her a permanent grant on the grounds that she would be better within 6 months, we carried on fighting. Eventually a permanent grant was approved after seeing a second district surgeon who actually read her doctors report and examined her. A few months later our hopes were dashed once more when she received a letter from SASSA to say she had to re-apply for her grant. How do you get someone who is bed bound, living on oxygen 24/7 and has a lung function of 17% to gather the strength to go through all of that again. Johan and I made calls, made contacts, emailed reports and letters and eventually her grant was approved again.
2012
Yesterday I went to our post box and there was another notification for her from SASSA telling her to collect a letter from the post office before 10/7/2013 or else her grant will cease!!!!!! How is this possible...the letter has only just been received and I asked our postmaster to please stamp it for me as proof of date of receipt. So, yet again we walk this now known and worn path....who knows what will happen next, but fight we will....
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