Starting Over

Today is the day I start over with blogging. This is the day I continue with our story, the day that I once again start sharing in our day to day lives.

 

Although I have said before that I will ease up on talking about Cystic Fibrosis, I find that I can't and I probably never will. It is such an integral part of our lives and it just doesn't go away. From the time that Mark was diagnosed in May 1987, we have lived Cystic Fibrosis every single day. There comes a time in the lives of some when they think to themselves 'I wish they would just shut up', 'I'm sick and tired of hearing the same story over and over', 'when will they ever stop whining' and sadly the answer is going to be 'never'. Now some will argue that never is a very long time and yes it may appear that way, but let it be known that as long as I have breath in my soul and as long as I know someone who is suffering from this terrible disease, then 'never' is that long.

 

NiQi has been in hospital just over 3 weeks now and we still don't know when she may be home. I am broken as a mother for not being there with her and my heart aches every day knowing that she lies more than 500km away from me. If I could I would be there and many reading this may wonder why I am not... let's just say for now that life gets in the way of wanting what you can't always have.

 

A year ago, NiQi was in ICU, fighting a new kind of survival. One where she thought she would die. The days were tough but the nights were tougher. Having received new lungs, she went through things she never ever dreamed she would. No one told her how difficult it would be. No one explained what she would go through, and even if they had, she had to go through it to know that this would be the worst she had ever experienced. There was a day when she said to me that if she had known it would be like this, she wouldn't have done it. Six months later she was heard to be telling friends she would do it all over again.

 

                                                    With Cathy after transplant 2017

                             Her heart pill taken 2017 after she developed tachycardia arythmia

                                                     In ICU 2017 telling us she loved us

                                                   Waiting to have a CT Scan - Feb 2018

                                              No more port - drip site only last a day now

                                                Doing self physio trying to get sputum

                                                     New pills added to to her daily dose

                                                                  With her PICC line

PMB Airport - on her way to Joburg - Feb 2018

 

Now here we are, a year down the line and we are still waiting for positive answers as to what is going on in her body... what made it freak out the way it did. Not being there to comfort her and encourage her is a lot for her to bear and I tell myself that God has a plan. He has to because this is not what I had in mind. I promised that I would always be there for her and even if it is at a distance, she must always know that I will never stop loving nor will I stop caring and neither will I give up... we will fight the fight forever and a day... until we each breathe our very last breath.

Hilton...is it really a good investment?

As you drive up Sweetwaters road and hit the boundary of Hilton leaving Pietermaritzburg, there is a board that states Hilton is a good place to invest. Well I sincerely beg to differ and I think that it is time the residents of Hilton and Winterskloof took a stand against the municipality.

When we left KZN, now almost 12 years ago, I remember the area to be very different to what it is today. Winterskloof was a quiet little country valley where everyone was friendly and everything ran smoothly.

We moved to a plot north of Pretoria at the end of February 2005, and that really was the back of beyond. It was for me a different lifestyle completely, but for Johan it was living in a way that took him back in time... a time when as a little boy he lived on a sheep farm in the Karoo where there was no electricity, no municipal water and no such thing as refuse removal.

On our plot we had 2 boreholes which were our water source and no refuse removal but we did have electricity. Boy oh boy did I tear my hair out in the first few years with the electricity as it went off at the drop of a hat... very frequently.  I remember one such time when it was off for almost 3 whole days. By this time the fridge and freezer had completely defrosted, our cell phones - which were our only communication with the outside world - were dead and our water tank had run dry. I was in tears as I told Johan that it was ridiculous we had to live like this when the country is supposed to be progressing.

Well we survived and just before the next elections our area was given a complete upgrade with our electricity. It worked  and it worked well as for the rest of the time we lived there, we had fewer power failures. This was of course all before the time of NiQi using oxygen so it did not cause me half as many headaches as I have these days.

Having moved back to our valley at the end of August 2015, we have been frustrated on so many levels by the way the infrastructure no longer seems to cope with the usage.  What bugs me more than anything though is the fact that now NiQi is on oxygen it is imperative we have a sustainable system that can cope. Over the years we have invested in a generator and an inverter which helps with the running of the fridge and the freezer etc but neither can cope with the running of her oxygen machine which pulls too much power to run it efficiently and effectively.  This means that she has to use her portable machine, which only lasts for 3 - 4 hours until it requires charging again.  So this means she goes to sleep later in the hope that the power will come back on and she doesn't have to use her portable.  If she is reduced to using her portable though then Johan and spend the night getting up to check that she is still alive and hasn't suddenly died as the alarm on her machine goes off with her falling into a deeper sleep.  Johan isn't as patient as I am when checking as he beats on her door and shines our 20W LED torch in her face making her wake looking like a deer caught in the path of an oncoming car with its headlights on bright.  I on the other hand enter her room on tiptoe by the light of my cell phone torch facing the floor, make my way to the side of her bed and gently move my head closer to hear if she is breathing. Never mind though that if the alarm on her machine goes off long enough, it wakes her too.

What really gets me though is that living in the valley we pay almost 900% more in rates every month than we did on the plot. Our electricity per kw is also more expensive here AND we have all sorts of extra charges that we are paying for that we never paid for there...

My argument to the municipality then is... where is all the extra money that is coming in every month going to if it cannot keep our infrastructure to a good workable level and really, if Hilton is such an upmarket neighbourhood as it is believed to be, maybe we should all be moving north to the plots where our money goes further... it may just be a better investment!!!

When 'old' friends meet

I believe it is friends and family that help us get through day to day life. They are our mainstay and without them we would be really sad lonely people. There is a saying, 'You can choose your friends but you can't choose your family' which in my case I have found to be very true. Families grow and extend and as different personalities and cultures become linked we learn to love because we are family but it does not mean we may like each other. I learned with time that as much as I tried I could not get everyone to love me let alone like me.  I am absolutely gullible when it comes to relationships and my nature and upbringing taught me to welcome anyone and everyone with open arms, however, little did I know that behind my back not everyone felt the same way about me.

With friends it is different. We make friends with people who we are attracted to or have something in common with and as our lives progress, we mature, circumstances change, we move on, and while some of those friendships may eventually die, there are only the best and strongest that survive.

Through my life I have gathered a handful, well maybe both handsful, of really good friends who have seen me through the highs and lows of my life and continued to stick around. One thing I have learned about friendships is we are able to be ourselves with little or no judgement. We can be brutally honest with each other and tell our best friends things that we may not open ourselves up to telling anyone else.

So on the eve of New Years Eve I met up with 3 friends from high school. We were trying to work out how long it had been since the four of us were together and we couldn't remember exactly but reckoned it must be about 12 years ago.  We have emailed and messaged and facebook commented and met up with one or two together  over the years but it took me moving back to KZN to get us all together again.  And guess what.... we picked up and chatted as if we had never been apart.  Our children are all adults now, scattered across the country and even the world but having followed each other all these years we knew exactly where they are and what they are doing. There was no pretence and that is what I enjoy about really good friends. 

2017

A new year, yes a new year and I wonder what lays before us in the coming months . We have made plans for 2017, not all set in stone, but we are working on the shell and filling in the gaps. Foremost in my mind is that our plans may not be God's plans and so we will pray that He will go before us and pave the way so if we have to make adjustments we will be geared towards doing this. I certainly hope for a better year for us this year, one where at the end of it we can look back in relief and say 'that was a good year'.... like they might say about a good wine.  I think friends and family must be getting tired of our gripes, tears and our fears from one year to the next and looking back recently I think the last time we had a year of any substance was in 2010. Of course there have been moments of happiness and joy and many of them have been shared with close family and friends. Our lives would be empty and dismal without people to share moments with and I am truly grateful we have those special people to do this with.

So bring on 2017, we are hopefully ready for you....

Letting Go

WRITTEN IN AUGUST

I looked at the cupcakes I left on the dining table yesterday and started packing them one by one into boxes. 12 hours of dedicated work all gone. It was only when I looked at the melted mass of icing and chocolate on the 'Death by Chocolate' cupcakes that tears started rolling down my cheeks and I called out to God. Suddenly my resolve was melting just as the icing had done the day before in the heat of the day. The tears fell faster and my prayer changed to questions.... but who am I to question God when He has promised to look after me. My mind became a confused puzzle and suddenly it was no longer about melted cupcakes and our loss of profits but it became about my whole life which is crashing down around me. The tears flow faster and my questions to God are increasing with every thought that is galloping through my brain. Why is this happening? Do I deserve this? Have I not given enough to my family... my friends... my community... my church? Have I lived selfishly and only for myself? The wall I have built around me for so many years is eroded quicker than it was ever built. It has become so high, higher than my head, each brick put in place by yet another hurt or another step back. The things that have been left unspoken are running through my mind and I am wondering if I had been a different person, stronger, making myself heard, more assertive, if my life would have been different today?
Looking back in time, if I had chosen to stay in the workforce instead of deciding to care for my children by staying home with them, would we be better off today? I question myself and the decisions we made but I have no regrets. I have loved being a mother to our children and a wife to my husband. I feel in my heart that taking NiQi in and giving her a home with love and security was a good choice. But could I have made the wrong choice to be a wife and mother first? Should I have gone back to work full time after our boys were born? I think of friends who were in the same position as me and I don't know their thoughts, I cannot know their pain in their loss but for me, I know that I did what I felt was right in our family situation. I am glad I stayed home. I am glad that every day Mark needed me I was there. I didn't have to worry about asking for time off from work and I could juggle my days so that I could give equal attention to all our children. Mornings were exclusively Mark's while Matthew was at school.  Was home schooling NiQi through high school a bad decision for her?  I would hope not and I am glad that we persevered so that she completed her "A" levels.  Have I been too protective of our children?  Some would say 'yes', but I think that I gave them a good spiritual grounding and the foundation for life was laid to be strong.  What they do with that foundation and how they build on it, is up to them.  "Train up a child in the way he should go, even when he is old he will not depart from it" Proverbs 22:6 -  I hold tight on this verse and believe that years of Sunday School, youth and home values will help them make 'right' choices....

but still, as my mind reels at where we are today and how hard we have worked over the years I am sad to admit defeat....

No one knows me as God knows me
No one knows the hurt I have endured.

No one knows the heartache I have felt at the hand of so many who have crossed my path.

Today I am more than sad, I am wretched, I am frustrated and I am vulnerable.  But at the end of today I will dry off my eyes once again and pick up the pieces of my life that have become tattered and torn and I will stand tall....why? because I am a survivor..... made strong by judgement and ridicule.  I am me... I am God's creation who realizes that I am not alone and my battles are already won.

Day 4 - Baking

Well quite obviously these posts are not running in daily format and I have to confess that I have had so much 'joy' taken from my life recently that I have very little happiness going on right now. I decided though I will think of something today that really gives me happiness to get rid of my humdrum feeling.

So today what gives me immense joy is baking. I have always loved baking and when our children were younger I baked every day. There were always cake or biscuits, scones or pudding to eat.... always a variety and never a short supply.

My specialities in those days were scones, milktart and chocolate cake. As something to do with the boys when they were at pre-primary we had an afternoon of baking every week. It was a time we could spend together having fun and they not only learned fine motor skills with l mixing and patting and rolling, but they  also learned math with measuring and taking instruction from the recipe.

I will never forget the day that we made scones and Matthew pounded his dough like he was making a mud pie. I told him to calm down, he had to treat it gently otherwise his scones would not rise. Our scones went into the oven and the boys waited patiently (another skill to learn) while they baked. Well when those scones came out of the oven who looked the fool for producing the flattest scones? Yes, it was me... and whose scones rose the highest? Yes, they were Matthew's.

Baking these days is not to feed my family treats but to earn much needed income. Every creation I bake and decorate gives me huge pleasure and satisfaction and I thank the Lord for blessing me with a gift, a talent, that I can use to help our family.

Day 3 - Matthew

Day 3 comes on the tail of day 2, posted earlier today but I am trying to catch up now...hehe

Matthew, for those who don't know us, is our eldest...our first born....our blue eyed boy and only because his eyes ARE blue and Mark and NiQi's are brown.

Matthew makes me happy...
He is one of those children who can make you want to tear your hair out one minute and the very next your heart melts with love.

We have a special mother/son bond that has stood the test of time.

He was always the child I worried about. Unlike Mark who was brave enough to stand up for himself and NiQi who went with the'flow', Matthew was very easily influenced as a youngster. Years of being under my thumb, youth and Sunday School, taught him as he got older, to stand for truth, honesty and loyalty.

He had a tough time growing up with cousins that bullied him and pushed him around and an infinite love for his brother who he fiercely protected. He matured early and was wise beyond his years. With Johan away so often for badminton, birds or work, he became my sounding board for advise. He listened and he helped me in so many ways.... looking back I realize that he had far more placed on his shoulders than any child should have had to deal with.

When he was 11 he saw and lived the turmoil our family went through after the death of his ouma and just 7 weeks later the death of his brother. He endured what no child should have had to. Yet through all of these challenges he managed to excell both in the classroom and on the sports field, earning an academic scholarship to St Charles College and playing for their 1st rugby team post matric.

In his final year of school a life changing event happened that affected the rest of his year and ultimately the rest of his life. His faith pulled him through as he carried this secret with him for the next 12 years, dealing with it in his own way. This secret was revealed in the most malicious of ways by someone whom he had loved and trusted with his life. Revealing it was the beginning of the end of the relationship. The trust was gone and with it everything else he held dear.

The last year has been the worst and the best in his life. A chapter closed that he never dreamed would close and a new one began, a better one.... one that has given him more peace and happiness than he ever imagined would come his way.

He is our boy, our son, full of integrity, striving for truth, putting the past behind him and looking ahead to a brighter, happier more fulfilling future. He is my happiness today....