Never Think You Are Alone

A couple of days ago  I read a post on Facebook that brought a lump to my throat and a tear to my eye.  You know that feeling when you can actually see yourself walking in their shoes, either because you have already walked that road before or because you know you still have to walk it.  For me it was because I know I still have to walk it and the unknown can at times be pretty scary.

This was the post that I read, and to protect the family involved for their own privacy I have blocked any names mentioned...

This is an exceptional case where convalescence is taking longer than the norm, but as NiQi's doctor has told us, each patient presents as an individual and no two are the same.  The transplant team are learning with each transplant operation and nothing is predictable.  Some bounce back only days after such a major operation and others take so much longer.  No patient can compare themselves with someone else because they are not that person and it is not their body.

Since NiQi's year of exclusion from claiming on her medical aid ended at the end of June last year, we are following the processes and living from day to day.  She has been blessed with the way her health improved for a time, but we know that she cannot continue as she is forever.  In recent months we have noted the use of oxygen more frequently, the loss of energy, the coughing fits, the shortness of breath, the tiredness creeping on and we know that if she wants the life she desires, then a transplant is her only option.  

I have read many posts and blogs and media stories of transplant patients and realize I may think that I know what NiQi is going to go through, but in reality we won't know until it happens.  So reading the post above made me aware more than ever that we have to be emotionally prepared for anything.   The one thing I know that we will able to count on is the love and support of family and friends...just knowing that they stand behind NiQi makes what she goes through on a daily basis all the more bearable.

Sacrifice Is Not Easy....But Necessary

I imagine that only those families who have gone through the process of waiting for a transplant will understand this post but I hope that if you read this you may try to understand.

As you know by now, NiQi, who was born with cystic fibrosis has reached the stage of lung transplant. Having watched her health progress over the years to how she is today, it has been a continuous roller coaster. She stays well for a while, gets sick, goes to hospital, feels better, gets sick and so it goes on. The years of 'wellness' with time became shortened to months in recent years until now we are talking literally a week or two before she starts up again, riding it out until she can have IV's again.

When Mark was still alive we watched the progression come upon us so much quicker until there was a time that his paediatrician told us there was no more they could do for him. Back in 1994/5 lung transplants were still very new and the success rate was very slim so it was that Johan and I decided we did not want him to suffer  any more than he had or was already and the disease took his frail little body at age 9 years.

It is now 20 years later and some years back when NiQi was still a minor and we had very little knowledge of the progression made in the medical field of lung transplants, we would possibly have made the same decision for her as we did for Mark. The decision now though is not ours to make, as NiQi is an adult and well capable of deciding for herself.

I understand fully her desire to have a transplant as she imagines and envisions a life so much better than she has now. Quite selfishly too I picture my life with her being around for so many more years and if she can gain from a transplant then we are 100% behind her.

What we, and I am sure you didn't know is that to get there we have to make certain lifestyle changes. There is a list of 'NO's' that have to be adhered to post transplant, all of which affect NiQi herself  and a few which affect us. For example NiQi may not eat sushi nor biltong, both of which are raw foods and totally forbidden because of it. She may also not eat grapefruit....and she may not be around chickens nor other birds...although birds in the wild do not count I believe and even though we were told this as far back as September it does have an impact on our family. Johan emailed a doctor friend of his to get his opinion and he did confirm this as fact but when birds have been a part of your life as long as they have been a part of Johan's, it is a hard pill to swallow. Questions come to mind in argument of the logistics of keeping them or of being in the vicinity of them. It is understandable that you should not keep them as pets in your home or visit friends or family with the same, BUT, if you live in a town house and a neighbour moves in next door and builds an aviary for homing pigeons or budgies or parrots of some type...would that require you to move home? Say it should happen again some time in the future, would you once more be on the move?  What do those who live in Australia do when flocks of cockatoos reside in your garden and make themselves at home?  This is the enquiring mind of a bird keeper and full time bird lover.  When we visited the transplant team psychologist, this was a question posed to her. Her answer before hearing Johan out, was to get rid of the birds but a further question of whether there may be a suitable distance between the birds and our home was quite complex for her to answer. Living in a semi rural area where the birds can be housed some 800m from the house could in effect be construed as having 'birds in the wild'....we await her answer in anticipation as she promised to ask the surgeon and pulmonologist who is NiQi's case doctor.

In the meantime, we have made a huge decision already while we wait....with our imminent move back 'home', we are going to get rid of all the birds except the budgies. For now we will hold on to them and Johan will build a new bird room at the furthest section of the smallholding, which will be totally enclosed and fitted with extractor fans, air con etc.  When the transplant takes place, if push comes to shove, and it is a definite 'no' then Johan will get rid of the budgies too. No sacrifice is too big or small to preserve the life of our daughter....our precious gift from God.

Packing Up

So now we have established that we are moving on, there is so much packing we need to do.  Boxes are to be collected and filled with a life's accumulation.  I don't need to mention that under the carport we have 15 tubs filled with things that have never had a space to be unpacked into since moving here 10 years ago.  I know at this point some would say that if they have never been unpacked then we may as get rid of whatever is in them, but we can't.  There have been occasions that I have needed something in one of them and have sought out the labelled tub to find what it is I need.  One good thing is that everything in the tubs is already packed up which will save me some time....

I am going room by room and already find I have empty shelves and cupboards, boxes packed and nowhere to go with them.  Space has always been a problem for us here....our home is average size, smaller than we were used to, but things are definitely cramped with furniture and bits and pieces.  Needless to say, we left Matthew with enough furniture to keep him comfortable when we left, the flat is fully furnished for NiQi and both the garage in Willow Lane and the shed here is filled with more furniture.  On the upside, I have been able to move things around and in and out at will, just for a change of scenery!!!

Things on walls that I don't want to leave behind are coming off and being packed in too.  Although we have no definite date as yet to move, I want to be ready.  This time I want to leave with the house properly cleaned...walls washed down, cupboards scrubbed out, floors and carpets cleaned.  Johan needs to fit a new stove in the house before then as the one that was here when we arrived didn't ever work properly and was given away as scrap some time ago.  The gas stove in the flat we will take with us.

When we moved here we were rather rudely pushed out with our tenants opting to move in at the same time as we moved out, instead of at the end of the month which had been agreed upon.  I have decided we will not be pushed around or bullied into leaving when it suits the new tenants...we will make the decision when the time is right and this time we will be sure they will be stuck to....in the meantime there is much to do....

A New Chapter Begins

The last 6 months have brought many challenges about in our lives, which have consumed my mind, my thinking and my energy.  This is the reason that I have not spent much time blogging, not because there is nothing to write about but rather I have not been inclined to.

The events leading up to the here and now, have made up our minds to close the chapter we are currently in and start afresh.

When we made the move here almost 10 years ago, we were both excited and sad.  Excited that we would be a family again, with Johan, NiQi and I together, but ever so sad that we left Matthew behind in KZN.

I confess that this chapter has not been as I had hoped and imagined, but we have made the best of it.  There have been both advantages and disadvantages to living where we are and at the same time I have to remind myself that much of where we are now is brought on by circumstance and the current situation in this country.

I love that we are away from the hub bub of town and the masses of people, the noise and the pollution.  The quiet mornings broken by the bird life waking at dawn and the cool winds that end a stifling hot summers day, have been some my favourites.  The short rain season, the dry winters, the dust storms, dirt and filth are the things that I have not enjoyed about living here.

We arrived with 3 dogs, the koi and a lot of budgies and have had a variety of animals join us over the years.  As with the change in season, some have stayed and some have moved on.  We had our pigs and our sheep, the rabbits, chickens and pea fowl, the koi - new ones from the ones that came with us, squirrels and the tortoises, the dogs and cats, and lastly, the horses and our collection of birds, which started out just being budgies and now is a wide variety of both smaller and bigger birds.  When we leave here we will be taking the birds, dogs, cats and horses....much less than we are used to, but it is time to cut back on the work now

Once settled, we were shocked to find out that our cell phones were our main form of communication as we were immediately plunged into a different life in South Africa where cable theft was and still is rife.  Telkom has long given up on replacing cables that have been repeatedly stolen, leaving inhabitants to the area little choice in telephonic means.

Added to that, comms. are bad here, no matter what cell phone provider is used.  Between the 3 of us we have MTN, Vodacom and Cell C, with each giving their own challenges.  When one network is down, another may be working, but fairly regularly we have battled with none of them at all.  This doesn't only affect use of our cell phones but the internet as well.  We have dongles, but for some reason unknown to us, it is easier to connect directly by turning on tethering and portable WiFi.  At one point in time when Mariana and Bryan were living in the flat, Bryan contacted Vodacom about their poor and slow network service and it transpired that we fell just beyond the boundary of the closest tower to us.  They had plans to, and did erect another tower leaving us falling within its' boundary and it did improve matters immensely for him, and NiQi who is also on their network.  Strangely, we have never had a problem with SABC reception, in fact it is very good and even E-TV has always given a pretty clear picture.

The roads have been a continual problem for us and driving the last 7km on the dirt road that first night we arrived here, the Astra shook until it could shake no more.  Yes, the roads have been unkind to our vehicles these last 10 years.  The engine of the Astra almost fell out with the continual shuddering each trip it made from home and back again.  We have replaced more tyres in the last ten years than we ever did in previous years... it is amazing the number of times we had a 'slow' leak, only to find a nail or some such thing embedded in the rubber.

We have been burgled five times over the years - two times in the main house and three times in the flat.  The worst being just a couple of days after NiQi's 21st birthday whilst she was in hospital having IV treatment. Sadly she had all her presents stolen - most of which were jewellery.

One morning we woke and both our vehicles had been broken into and vandalized.  All the door locks were broken, windows smashed, wiring cut and the batteries swiped.

Yes we have had more to cope with than most in a lifetime, but moving here was an end to a means.  We moved so that NiQi could receive better health care and so we could be together as a family...and that has happened.  She almost hit rock bottom but she bounced back in more ways than one.  She is at last listed for a lung transplant and she has been told that she can live anywhere in the country so long as they know where she is. , There has been good and there has been bad, but now is the time to move on.  Our plan is to go back home...home to KZN...and home to Matthew who too is starting a brand new chapter in his life.  Our prayers are that God will lead us in the right direction -  and we will follow wherever He wants us to be...

Rings n Things

I looked down at the ring I wear on my finger the other day and took a double take...with my eyesight not as good as it has been in the past, it needed me to put on my glasses and have a better look, before realizing that what I thought I saw was in fact so.  One of the emerald stones has indeed fallen out, and when it happened or where it happened, I am not sure.

With all the work I do, I choose to only wear this ring as it is small and less likely to become ruined by wear and tear.  It is in fact my birthstone ring and if truth be told I received it by default.  Having a husband who is not big on giving jewelry, bless his soul, I remember him saying to me after we were married that my wedding ring would be the last I would receive from him.  Not being one to be trapped by desiring bigger, better or more than others have, it did not truly concern me, but I guess my story concerning rings started from the time we were engaged.

When Johan first asked me if I would marry him and I said 'yes', we went 'ring shopping', looking in all the jewelry store windows to find something I liked.  Eventually I found something, small, pretty and delicate and it came as a twin set with the wedding band fitting in...just what I was looking for.  From ring shopping the next step was to ask my parents if he would give his blessing and it came with the usual 'daddy' speech of those days - lol

Once that was over, I just had to wait till the official big proposal took place and when that ring was placed on my finger I was the happiest girl alive.  My happiness came crashing down around me, when one Sunday night after returning home from church I saw that one of the stones had fallen out.  I clearly remember Sara and I crawling around on our hands and knees on our bedroom floor, as well as in the passage, looking for a diamond that we were very unlikely to find, and find it we didn't.  I guess the next day, when I told Johan what had had happened to my ring, was the day I realized without a shadow of a doubt that I had chosen right and I had chosen well.  I was nervous, no petrified to tell him, imaging him getting angry and shouting the odds...but he didn't.  He wasn't angry at all, in fact he was really calm and almost apologetic at what had happened.  We took my ring back to the shop where he bought it and they promised to repair it.  Sadly when we got it back, it looked nothing like the original design and I was so clearly disappointed that Johan did his best to sort it out.  We ended up receiving a complete new engagement ring and separate wedding band to replace what we had before and I wore them for many years before they were stolen during one of our many break-ins.  Having insurance gave me an opportunity to 'replace' them and with the value having increased over the years, I was left with a big decision in choosing replacements and was blessed to be able to get 4 rings for the same value - a new engagement ring, two eternity bands and the emerald ring, which as I said before, is my birthstone....and that is the story of how I got this ring 'by default'.  Every day looking at my ring brings back different memories, the best of which is that it binds me to the man I love, the man who has shared 33 years of his life with me, the man who has seen me at my best and at my worst, the man who I have shared laughter and tears with, the man who with the Lords blessing will be by my side for many, many more years.

 Soon after we became in engaged in June 1981

 As we are today...

We Have a Baby Boy

Sunday  I posted photo's on Facebook of Switch's huge, overdue belly.  I had googled again to check the gestation period of a horse, after my initial calculation of the 8th January passed by and she was still walking.  Reading that you have to make allowances for various reasons not easily explained here, I recalculated to the 14th January.  Well Johan left for KZN and NiQi was admitted to hospital on the 14th, and Switch just looked over her shoulder at them as they said 'goodbye' as if to say...'yah, now I have some privacy'.

Not wanting a repeat of last time, I did not want to appear the over anxious mother hen again, so every morning I resisted the temptation to go outside in the hours after waking just to have a peek.  I realized I would probably miss the whole birth again, and just hoped and prayed that all would progress with no problems.

Each morning I walked outside with my cell phone in one pocket and my camera in the other, in the hope I would have something exciting to take photographs of.

Yesterday morning, Monday, I went out and looked over to where Switch usually stands in the early hours, when she is waiting impatiently for me to get out to feed her...as if she is the most important individual around!!! Well she wasn't in her usual spot , but not far off and strangely she didn't move closer but stayed where she was.  I looked at her belly which still seemed quite rotund and fleetingly I thought she was still carrying her foal.  Then I noticed her looking back over her shoulder and back at me again as if she was trying to tell me something.  I peered into the distance of the new dawn morning that was just breaking through and I thought I saw something through the grass.  My heart skipped a beat as I knew it was her foal and I was dying to see it.  I went as quickly as I could to get the horse food and after feeding her, Zorro and Angel, I crept along to have a good look.

There it was lying under an orange tree, beautiful and perfectly formed.  It couldn't have been born too much earlier as it's mane and tail was still damp.  Out came my camera and phone as I quckly snapped a few photo's.  The light wasn't very good but I did manage a few before it must have smelled me standing close by, as it let out a whiny for it's mum.  I haven't seen Switch run so fast in a long while as she tared toward me, head held high.  I spoke to her in a sweet soothing voice, as she slowed her pace and reached her baby.  She nosed him and the next minute, he was up on his feet...wobbling a bit and setting his gangly legs in position to keep himself upright.

The day went by so quickly for the new born as I often went out to check on them both.  He followed his mum around as she munched on grass and if he wasn't laying prostrate on the ground sleeping, he was on his feet suckling from Switch's extremely full udders.

Before the foal was born we had told Matthew he could choose a name, and when I came back in the house to share the good news with the family, I asked him what his choice of name was...he came back to me within  minutes...his decision - Yash's Pride.  Yash means victory and prosperity...a good choice for a beautiful stallion.

 If you look close to the middle you will notice a lump pushing at her side

 Switch and her big belly

 As I first saw him under the orange tree

 Switch checking on her newborn

 Standing on his feet for the first time

 lying prostrate on the grass

 His back hooves - already worn

 His wispy tail

 His sparse mane

Sleeping as a newborn does

Chance Meeting with a CF Mum

This morning I was on Facebook, as I am most mornings after breakfast and I read a post on one of the CF groups posted by a mum.  It caught my attention more so than many others as this mum was saying that her little one has in the past had Colimycin for a Pseudomonas infection which she received in both the USA and the UK but now in South Africa she couldn't get any because of it STILL not having been approved by the Medicines Control Council.  AHA, I thought to myself, I may be able to help here,so I quickly hovered over her name with my mouse to see where she is situated, and lo and behold, it is Pretoria....so I commented on her post and said I have some spare if she would like them,  It wasn't a minute later that I had an 'inbox' message from her asking where I lived.  I messaged back and likewise asked where she is. Well we are on opposite sides of the city, but no worries, wherever anyone goes here, one tends to have to travel great distances.  After giving her my GPS co-ordinates, she said she would get in her car and leave straight away, which left me sitting bolt upright and thinking, yikes I better do some tidying up - after all this isn't just any visitor, this is a CF MUM!!!!!!  Calculating I probably had about 40 minutes before she arrived  I summed up in a split second what I needed to do to make the place look anywhere near acceptable and got cracking.  Out came the vacuum cleaner to whip over the carpets, the bucket and mop to clean the kitchen, bathroom and toilet floors and every surface I could see was Domestos'd and disinfected...all things I was going to do once I had rested from my early morning stint and caught up on Facebook.

As it turned out, I had quite a bit longer than anticipated to get things under control - lol - as she frantically called me after her GPS had sent her to a very remote area near Soshanguve.  Not knowing the township area at all left me a bit perplexed for a second, trying to give her advise as to how she should travel to get onto a road that would eventually bring her to me.  With us not being on Google maps nor any other map for that matter we had to find a point that would get her going in the right direction.  Finally we hit on Grootvlei Garage, which is not too far from us and is a point that IS on Google maps.  She said she would phone me as she got closer, so I waited for her call.  Eventually, she did arrive here - after about two and a half hours!!!!!!

We spent the next two hours together discussing CF health care in the USA, the UK and South Africa.  She has had a bit of a shock to say the least and apparently fired the doctor she was recommended after just one visit.  I have often read the comments and posts of those from the rest of the world on these groups and thought to myself, how I wish we had access to the things that they do, or how nice it would be for so much care to be given from health care officials and hospitals, as is so often described and then depicted in my mind.  Yet, strangely enough I found myself defending South Africa.  Without even giving further thought I told her about what we personally have experienced and how we have moved on.  In defense of our state hospitals I told her how difficult it is for our CF doctors to gain the best that they can for their patients.  NiQi, and Mark have been blessed with excellent, caring, well educated in CF, doctors and physiotherapists and without a shadow of a doubt I can say that they have received the best.  Going even further, I think of the survival rate in South Africa of our CF's and I think it is more than comparable with the rest of the world...after all NiQi is now 24 and some of the other CF patients that we know of are even older than she is.  So even if Colimycin hasn't YET been approved by the Medicines Control Council, at least as a state patient it is available and because of that I was able to help a fellow CF mum out today with some of this 'gold dust' that she desperately needs to keep her son healthy.....and that, as some would say, is how we roll...