Larkwood Life: Almost 24

Home alone today, washing all the curtains in NiQi's flat and feeling quite sad, for whatever reason I don't know. Tomorrow is NiQi's 24th birthday and I guess that the emotions that well up inside me today are a culmination of the years since she was 21 and what brought us to this point in her life.

When we decided all those years ago to open our hearts and our home to this tiny little baby with the big brown eyes, I guess I really didn't have a clue what to expect years down the line. Taking NiQi in and knowing she had cystic fibrosis was really not enough, it has, to say the least been a life of learning and it isn't over yet. To say that cystic fibrosis isn't the 'be all and end all' of our family is the truth, because even though it plays a huge role in our lives, we have not allowed it to take over...we are not obssessed with it. I do not blame cystic fibrosis for any of the wrongs in our life and I do not hate it as so many parents seem to do that live with it daily. I think the fact that Matthew was born without cystic fibrosis made me realize early on into Mark's life after diagnosis, that we have to create a 'normal' family life as much as possible. Looking back on my own childhood I was very blessed not to be a sickly child and if I was ever not well, we were put to bed and basically left to 'sleep it off.' I know that may sound terrible but I guess we soon learned that with 4 children in the house, there was very little time to be sick. That is not to say that my parents didn't tend to us when we were sick, because they did, but it always felt to me like being sick was punishment so I didn't really want to be sick and lying in bed on my own.

When Mark was diagnosed with cystic fibrosis at the age of 15 months, it was somewhat of a relief. Finally I had a reason for having a child that was always sick, and although his illness was somewhat more than the common cold or a bout of flu, I no longer had these feelings of guilt whenever he became ill, because there was a very good reason for it.

I took to caring for him like a duck to water...I think God meant me to be a mother to someone who needed me so much - but still there was something in me that never wanted to worry a doctor un-necessarily, something that made me hold back in case I was imagining things, something that has always made me wonder whether I am over sensitive in my thinking that something may be wrong, that actually makes me wait....wait for what, you may ask and my answer is - wait, they may be okay in 5 minutes, or half an hour. This is how I used to be with Matthew more so than Mark or NiQi. Matthew I always saw as being like me - he was tough, he would pull through, panado would sort it out. Only many years later did I realize that I did Matthew a dis-service as a child when it came to him feeling unwell. He needed the same attention that Mark received when he was sick and he didn't get it. Not because I loved Matthew less, oh no, not at all, but because I thought in my heart and my mind that he wasn't as weak and so it could not be that serious.

I think because NiQi's early years were so very 'normal', I expected that as she became older she would continue as such. Having seen how Mark suffered, we soon realized that cystic fibrosis doesn't treat all patients the same way, and quite frankly NiQi was one of the 'lucky' ones. That is, until she hit puberty and then suddenly her wiring changed and all of a sudden we saw in her the possibility that maybe, just maybe, she wasn't as healthy as we had thought all those years. I remember some years ago sitting in clinic and her doctor telling her and I that every year since she had attended to Steve Biko clinic, her lung function had decreased by 10% and if it continued on that downward trend she would be dead within two years. It was shocking for both of us to hear it said like that and I don't know if NiQi determined to make more of an effort to take care of herself or what it was, but she saw through that year and the next and the next. Yes we have had setbacks, and extreme ones at that, but every time NiQi has rallied through them and pulled through. Her worst was the week between Christmas and New Year 2011/12 but a miracle happened and through prayer and her will to live she survived. Her next major setback was July/August 2012...that was when we saw her confused at what was happening to her, yet determined to carry on. I remember walking out of Steve Biko hospital holding Johan's hand after receiving what was at that time the worst news concerning NiQi. Only once before in my life had I felt defeated and that was when Mark's doctor had said to me that there was nothing more they could do for him and it was just a matter of time. This time round the news wasn't as devastating, but it was equally hard to accept. Hearing that if NiQi didn't have a lung transplant she wouldn't survive more than 6 months was a tough blow. It was her choice to make, not ours and she decided to try. So walking back to our car on that day with snowflakes falling gently around us, it was definitely a strange day to remember. Just a couple of weeks later she was home and we made a trip we thought at the time may just be our last with her. We travelled down to KZN for my sister's 50th birthday, a birthday we wanted to share with her. She sat bravely most of the time laughing and chatting without her oxygen, wanting to savour the time with her family feeling normal and not wanting to spoil it for her aunt. Eventually after much persuassion she allowed Johan to fetch her oxygen for her and she sat the rest of the time quietly taking everything in. Every time anyone took a photo, she took off the oxygen tube as she didn't want to be photographed with the oxygen pipe showing. Just a few weeks later was her 22nd birthday and we celebrated quietly at home with a handful of friends.

Since then, God has been gracious to her and given her much more time than was predicted. She is still pursuing having a lung transplant and we support her all the way. Recently her doctor said that she is having quite a time convincing the transplant team that NiQi does in fact need a transplant. They don't seem to think she is critical enough. Her doctor told them they don't know her. They don't know her history and they haven't seen her as she has seen her. It's easy to think on looking at her and talking to her, that NiQi is like you and me because that is what she makes you believe. Tomorrow she turns 24, a birthday I didn't ever think we would be celebrating. Whatever Gods plan for her life, He most certainly will be with her every step of the way, as He has been in the past.

Happy 24th birthday NiQi, may God continue to be with you for a long time to come.....