A long walk to FREEDOM!

Hi everyone, I thought I might update you all with a few thoughts before I am admitted to hospital tomorrow as I am not sure what the reception will be like in my ward and whether I will be able to go on line.

Friday last week was a nerve-wracking day for me, and not for the first time I might add.  I had booked my drivers test...yet again and this time I hadn't told anyone I was going as I have had previous disappointments and to explain  to people over and over all the time is just so exhausting.  Little did I realize, that my dad had actually broadcast to the whole world via e-mail, that I was going, so it wasn't as much of a secret as I had thought.  This time though, I am happy to say, that I passed!!!!!!!!!

      



 Oh the feeling of freedom is wonderful...at last I can spread my wings and fly....no more having to ask mum or dad to drop me off somewhere, I can just drive myself there all on my own.  All I need now are my own wheels and then I will really be independent.  For the time being though I will have to borrow my parent's vehicles, which I guess is in itself a good thing because I will be sure to drive the speed limit...and not take chances overtaking...and keep checking that incessant 'mirror, mirror, mirror, blind spot, malarkey.  Not having your own vehicle gives you added responsibility to your life, because you can't mess up and drive like a maniac in someone else's car...not that I would, but I'm just saying.






I am beginning to understand how age and wisdom fit together, like a hand in a glove... my entire life I have been told I have to take responsibility for my actions, which is not something a 5 year old understands, nor a teenager wants to hear...so finally all this 'responsibility'stuff is taking shape in my mind.  It's not something we all learn at a certain age, and it's not something that we suddenly wake up one morning and discover we have... like chicken pox or the measles... it's something we gather together over time and through experience.







I think I can safely say that I have had to accept responsibility and suffer the consequences far more regularly than most of my peers.  If I didn't exercise and have regular physiotherapy, then I would soon feel my lungs clogging up.  If I hid my pills away - which was fairly often I admit - when I was eating lunch at school, then my tummy and everyone around me would know it.  If I don't drink my shakes and watch my kilojoule intake every day then I lose weight so quickly it's actually scary...so I reckon that at age 22 I am almost a responsible person...  I say 'almost' because there is bound to be a time sometime in the future when I may be just a little silly.  :)  






So for the first time, in a while, this is me, Fabulous and Fighting :-D 
           
                           

Pains of all kindsl

Last week was definitely a very interesting time in my life...other than the fact that because of a major storm we had the previous week, we had and still have,  no internet access.                                 On Wednesday I had an appointment with the surgeon who inserted my PEG, to measure me for a 'mickey' PEG.  It was all supposed to be very simple...according to the doctors...however it didn't turn out that way at all.  The idea was that the tube initially inserted would be pulled out, the measure inserted and the tube re-inserted - lots of insertions there but anyway!!!!!  Soooo the surgeon started pulling on the tube which felt quite tight at first, but the longer and harder she pulled, the tugging tightness turned to pain...excruciating PAIN.  A final tug and out popped the tube with a monstrous, okay it wasn't that monstrous but it felt like it, cup like end on it.  Needless to say I almost broke my mums fingers with that final jerk and I cried like a baby.  Out of a pencil size hole popped this 2cm end and the surgeon looked at it quite bemused.  She was most apologetic and as amazed as me at what she had proceeded to yank out of my stomach.  Measuring was simple in comparison, but it had become apparent that the tube that had just been removed was not going to go back inside me, so she had to find another , smaller and simpler tube to be inserted to be used until the 'mickey' PEG has arrived and is put in...                                                                                                                               The next major happening in my life, was almost as painful...but a different kind of pain indeed.  My boyfriend and I split up....It was all very amicable and we have decided to stay friends, but it just wasn't working out for us.  This has made me think in the last couple of days of the pain that we all deal with in our lives. For some it is physical and for others emotional.  At some point we deal with both kinds in our lives and we all have to cope by ourselves, picking up the pieces in some cases and pulling ourselves together...re-building our lives...moving forward...whatever it takes to deal with that pain.  AND no one can tell us what we are feeling or compare their pain with someone elses because we all feel things differently.  As for my emotional pain, I will heal with time....the physical pain has already healed, just a memory...something that lingers in my mind but I know longer feel.  So next time you hear someone talking about their particular pain, lend an ear and listen to them and  don't compare your pain with theirs because it's not about you...or me... At that time, but theirs.                   So this me, once again, *Fabulous and Fighting* <3

Saying Good Bye's Isn't Easy

A week ago, yes can you believe it...it was last Wednesday that I had my first appointment at Charlotte Maxexe (or something like that) Hospital.  I was pretty nervous as I always am in new situations, but at least I had the support of my parents who went with me.

We borrowed a wheelchair from our neighbour for me to use as it is becoming increasingly difficult for me to move around now.  This simple piece of machinery proved to be a challenging item for my dad to wield.  Firstly he couldn't get it into the boot of the car, turning it upside down, inside out and back to front before he managed to find a spot for it. Hehe.  Once we were at the hospital and he had managed to take it out of the boot, he had to open it up for me to sit in it...that took a while, much head scratching, huffing and puffing - but eventually it was ready for me to take my seat on my new throne.

Our visit was exciting and informative and I am oh so keen to start on this new chapter of my life.  Sadly this did mean that I would be saying 'goodbye' to my family of 7 years at Steve Biko Hospital.

This happened the very next day when I had my final clinic visit at Steve Biko and I really felt very sad to be saying 'goodbye '-  BUT hopefully not forever as I have forged friendships with people there that have created bonds in my heart and soul.  Without the team that makes up the whole, my days at Steve Biko would never have been as happy as they most definitely have been and I thank them from the bottom of my heart for always making me feel at home and well cared for.

This is another chapter in my life that is over, written in my memory bank, waiting for the next one to evolve.  This one will surely be the most eventful one in my life...one that will see me grow into a new person, hopefully, and one that will carry me through to more in my life.

By the way, back to the wheelchair...my dad has passed 'Wheelchair 101' and is progressing to 'Wheelchair 102'...the one where he does actually open it and doesn't make me sit in the tiny gap he manages to squeeze open and wiggle myself in to pop the chair open.  GO DAD!!!

SO this is me, for tonight, Fabulous and Fighting <3 <3

Birthdays

Hi Everyone

NiQi hasn't written on her blog for a while now and I have her permission to put something here for you to read.  She has had a bit of a difficult time of late, especially this last week, so to keep you up to date we decided that I would share some of her...and my thoughts with you.

Last weekend we made a trip, a 560 km trip to family in Pietermaritzburg.  NiQi's uncle phoned to ask if we would attend a surprize birthday lunch. The birthday girl was my sister, NiQi's aunt - Sara, who happens to share her birthday with Josh...a life long friend who is just 2 weeks older than Nix herself.

We had planned to leave on the Friday, but had to postpone it for a day as our bakkie had a slight technical problem that had to be sorted before we could hit the road.  There was a list that had to be made of all the things to be packed and not forgotten and dad was his usual amiable self when packing at 1am the following morning...it was only a weekend trip, but it looked like we were going for a month.  So at 2 am we were on our way....travelling through thick mist  from Johannesburg all the way through the Free State until arriving just after 9 at Matthew and Jess.

Sunday was the lunch and we were in such a hurry to leave that we almost left without the cake.  This cake I may add, travelled all the way from Gauteng with us, being packed and pampered so that it would arrive in one piece.  Naturally Sara was 'gob smacked' when we arrived and with tears of happiness, we set off to the midlands for lunch at  Old Haliwell.  Sara turned 50 this year, a milestone age in her life...an age that when you are young and setting out on the road of life, is so far away in time!!!!


This reminds me of how so much in life is centred around different ages.
We start at pre-primary at 3...and grade 1 at 6 or 7.  We go to high school at 12 and finish at 17...We can get our learners licence at 16 these days and our drivers at 18.  We can also apply for our ID document at 16 and can vote at 18.  At 21 we are considered an adult...not needing permission from anyone to do anything anymore. So life continues, but for some, like NiQi life is an uncertainty and birthdays are celebrated each year with joy and delight at another milestone encountered.

When NiQi was first diagnosed with cystic fibrosis, she was 6 months old.  The average age of survival for someone with CF at that stage, was 21 and NiQi was considered to have a mild form so with care and treatment...who knew...

The year NiQi turned 9, was a terrible year for me as this was the age that Mark was when he passed away.  Although there was no reason to think that the same would happen to her, it was only once she turned 10, life became calmer for me.

Last year NiQi turned 21 and at the end of this coming week, she will be 22.  This year will be a quiet celebration but next year when she turns 23 she wants to celebrate doing something wonderful and wild doing something that is on her bucket list...maybe make a trip overseas...who knows!!!

So for now...this is goodbye...from me, her mum and NiQi D who is Fabulous and Fighting CF

**My "Night with the STARS'**

                                                        'ALL THE CELEBS'
     
So as you have all seen I keep talking about my "night with the stars", well tonight was the night.

Basically, how this came about was, my dad is apart of Afriforum up here in pretoria and about 3 weekends ago, he did some acting work for this advert that they have done to promote this movie/ documentary that has been made by a man with the name of 'Rian van der walt". He is a south African film maker.

My dad was able to score my mom and me an invite to the event, That is how I was able to go along. Now we did have some concerns about my health and how I would be able to handle such an outing. But I think the Lord was with me tonight for the very reasons I will tell you about later. Anyways, I had my oxygen tank in the car if I needed it, but luckily, my lungs held out for 5 and a half hours that we were there . :-)

This documentary, I am sure you are all wondering what it is about. Well it is something very real that is a huge problem in South Africa at the moment, and that is Farm killings. The documentary was about the genacide in our country with all the farmers that are being murdered. it was a really good, HARD hitting documentary and I think when it is available, everybody should buy a copy and watch it. I must warn you though, there are some very explicit details, which might not gel with sensitive viewers.
the name of the documentary is called "War of the Flea".

This is were the celebrities come in. They have pledged to help in anyways that they can to help stop these Violent, inhuman acts.
There were quite a few celebrities ther, a few of which I did not who they were. but of those I did know, there was Steve Hoffmeyer, Bobby and Karlien Van Jaarsveld, Chris Chameleon. Steve Hoffmeyer appears quite a bit in the film as he is an activist.

Chris Chameleon

                                                              Bobby Van Jaarsveld

                                                               Steve Hoffmeyer

                                                                      Not sure

All the celebs together

Now after almost 3 hours of sitting in a rather hard and uncomfortable chair, and after my poor tush has finally lost all feeling, they finally show the advert that they made, let me say, I got all excited when I saw my dad on the big screen, all dolled up and riding a horse like he is in the wild west. Haha, I think my dad thinks he is now a celebrity himself :-D

After everything that needed to be said, had been said, and the evening had been closed off, I waited for everybody to leave the theatre,  because I really wanted to get some pictures with the celebs, as some of them  stayed behind to chat. I wasn't feeling 100% anymore at that stage, but I needed those pictures. Now, I will admit, I am a total Sissy when it comes to celebs, I get all wierd eyed and tongued tied. So my dad organised for me to have a photograph taken with Steve Hoffmeyer, needless to say, I think with my heels on, I was almost taller than him. Lol.

My mom then bravely caught Bobby and karlien van jaarsvelds attention and I had my picture taken with them. Wow, and ladies we all know how good looking Bobby is, even though he is married, my heart still skipped a beat! haha. Anyways, my mom then started speaking to them, and asked if they ever do charity concerts, and Bobby said yes they do, they do one every month. (Now this is the part where I told you God was with me, in making me well enough to attend). my mom then told Bobby our situation with me and CF, and he said that they will most definatly have a chairty concert for me to raise money :-D IS THAT NOT AMAZING!!! Karlien and Bobby both then proceeded hug me :-) it was great.

So, we have all the detail we need to get this ball rolling!! God is SO good! I then got a third hug from Bobby and he said "God is good, he can heal. See you again then at the 'thing'' Haha, I think I almost fainted. I then needed too use my pump and get into the car onto the oxygen because I was so excited :-)

P.S. as mom says: I am insync with the celebs. We are both wearing Leopard print. Hehe



So all in all, tonight was a really good night!

And now for me, this is one tired Lady who is wishing you all a good night!

I am now going to be fabulous and fighting CF with my Pillow :-D

xoxo <3 <3