The road Less Travelled...

Living with Cystic Fibrosis can never be easy, not for the person affected by it nor for the family that surrounds them. Once it steps into your life and makes itself known, it just takes over....some families make it work and sadly others fall apart.  Cystic Fibrosis is a team disease, it affects everyone it comes into contact with.

When Mark was first diagnosed, I remember Johan was away doing his umpteenth army camp....far far away in the top of KZN somewhere.  Mark had recently celebrated his first birthday with just Matthew, my sister and I around him...this was the starting point of huge change in our lives.  I took him to clinic...in those days it was run by the municipality...for his yearly injections and the sister wouldn't give them to him as she said he was sick.  I remember her asking me all sorts of questions, like - when did I last take him to my doctor?  Had he been ill recently and was he given medication?  Who was he with during the day?  Who fed him and what did he eat?  Not sure what it was all about I answered all her questions as she asked them and I left with her telling me to bring Mark back when he was better.  Needless to say I was very upset and cried all the way home.  Once home I picked up the phone to speak to my doctor and then I found out that the clinic sister hadn't believed me when I told her that Mark had been to him just a few days before...she had phoned my doctor herself when I left.  I went to see him the following day with Mark and being the person that he was, he made me feel better about things.  The next couple of weeks we went back and forth and on the insistence of a friend and neighbour, I eventually plucked up the courage to ask our GP if he would refer Mark to a paediatrician.  From that day and for the next five weeks our lives were in turmoil.  Johan arrived home sometime during that time and I relied heavily on my parents and sister to help out with lifts and looking after Matthew.  Thank goodness Matthew was a well adjusted, easy going almost three year old...even at such a young age he just fitted in and went with the flow, never demanding, always caring for his younger brother, he was always 'just there'.  Five weeks on, many tests later, different diets followed...it became a process of elimination to eventually discover he had Cystic Fibrosis.

I remember the day I was told like it was yesterday....it was early Monday morning ,Johan was at work, Matthew with my mum and Mark's paediatrician came in to do ward rounds and then led me into the nurses station.  He told me Mark had Cystic fibrosis and then tried to explain to me what it entailed.  Just two things he said made any impact because I didn't really understand what it was and nothing else made any sense...the first being that he wouldn't live to adulthood and would probably die before he was a teenager and the second that we would never have to worry about his care as the state would cover it and look after him for his lifetime.  Two very obscure statements made that I remembered more than anything else said.  lol

I cried that day for my little boy who undoubtedly was never going to grow up and share in a life that he dreamed of...I cried for Matthew who at this stage wouldn't understand that he would one day lose his brother...I cried for Johan and myself...were our lives going to change from that day on?  If so I had no idea exactly how at that point in time...

Today is many years later, we as a family have been through so much and when something as huge as Cystic Fibrosis enters your life you just want to share everything about it with all that you meet up with....from the people you go to church with, to the teachers and parents at school, those your spouse works with...anyone and everyone who is willing to listen.  You talk about it to everyone...but no one will ever know what it is to actually live with Cystic Fibrosis, to watch your child daily and look and listen for changes, to encourage them to eat more food than the average person needs, to count out their pills at every meal and snack in between, to weigh them constantly to see if they are gaining, to listen to them coughing when nebulizing and doing physiotherapy and struggling to gain their breath after they have just exhausted themselves during the process.....no, no one understands except the family that live it every single day.

I thank God for being my shoulder to cry on and for the awesome friends and family that have stood by us over the years, for the wonderful doctors and nursing staff who just never give up learning more, going to conferences; put their personal feelings to one side as they poke, prick, prod, beat and bash my children...every one of them have become heroes in my eye.

Now as NiQi is half way through waiting for her year of exclusion to be up, we are starting to get excited to the fact that maybe, just maybe there will be new lungs for her soon....there will be new mountains to climb but we hope and pray that the bumpy road will eventually begin to smooth out and become easier to travel....

Johan and I on our wedding day - January 1982

Mark and Matthew - 1991

Matthew, Christmas - 1992

Mark, Christmas 1992

Nicky, Christmas 1992