It's time for a big change for the Johnston Clan

No, we're not pregnant...

No, it's not April Fool's...

No, I didn't win the lottery... 
(Although, having said that, I do feel like I've hit the jackpot as far as my career is concerned.)

... I've just accepted the best job in the continent for my line of work!

I'll be taking up the position of HPC Engineer at the Center for High Performance Computing, within the Advanced Computer Engineering Lab, at the Council for Scientific and Industrial Research. 

In other words, I'll be working in the facility that houses the fastest supercomputer in Africa, and potentially (TBC fairly soon:)) the fastest supercomputer in the Southern Hemisphere.

I will be heading up the HPC ecosystems project for the region in a bid to prepare facilities to be ready for the eventual commissioning of the Square Kilometre Array. Yeah, you can tell I'm fairly excited about it :)

This means that the Johnston Clan will be semigrating to Cape Town!

It will be sad to say goodbye to our home of a collective 70+ years and to say farewell (for now) to all of our friends, our church and our family but there's an excitement stirring in us to make this move - we can't steer this ship if it's not moving and we can't wait to see what God has in store for us!

1 Peter 5:14 - Greet one another with a kiss of love.

Regrettably I'm unable to truly capture the wonderful moment this morning when I took the kids to school and I wish I had had my camera ready ... (I feel like I'm scribbling with crayons on an animal-hide canvas trying to reproduce the Mona Lisa!). I'll do my best though ... 

Picture the scene: I'm walking through the kids' school parking lot, Hope's to my right with her hand in mine, while she pulls along her little wheelie backpack. A couple of meters up ahead, Arthur is frolicking towards the school with his Lightning McQueen wheelie bag trundling along behind him.

Suddenly, seemingly inexplicably, Arthur stops. He looks over his left shoulder. He's spotted something. He drops his wheelie bag and spins on his heels back towards the parking lot, his face splitting in half from ear-to-ear with a massive grin on his face. 

From where I'm standing (I've now paused because I fear he's spotted a giant purple dinosaur lumbering up from behind me) I can't see what has caught his attention but I can hear something gracelessly scrambling along the gravel stones, hidden from my view among the cars. I strain to look and I spot this tiny three'ish year-old figure sprinting, as fast as little three'ish year-old legs can safely permit, towards Arthur. I can't make out who it is but I can see two arms sprawling in the air as the forward momentum buffets the arms against the air resistance pushing them back as if this kid is a miniature version of one of those tall arm-waving air dancers on the loose. 

Then I make out who it is - it's Arthur's bestest ever bestest friend of all time in the whole life of the whole big giant completely whole world, Ollie, at which point said friend lovingly bundles straight into Arthur with all the energy of a sugar-frenzied child in a sweet shop and the two lock arms around each other as if they're clinging to the very essence of life itself. 

Half a minute passes, and they haven't shown any sign of even considered lifting their heads from each other's shoulders while they continue to rock from side to side in what would have befitted two grown men in a "world-cup-winning-try celebratory embrace". These two aren't two grown men, though - they're two little boys on the very cusp of life and what hits me as I'm basking in this visual spectacle of unadulterated joy is that the most amazing thing is neither of them scored a try or did anything more to deserve this affectionate love other than that they are both just awesome little kids who don't see the warts, the nonsense, the bollocks of life. 

Then, very slowly, cautious to ensure their actions don't end time itself, they release, turn around, and walk into school together.

Hope's operation and latest news

Yesterday, Kat, Elora, Hope and I spent practically the whole day at Westville Hospital (practically our second home of late; it's so regular now that even the nursing staff recognise us and remember our previous visits). I have to state that Elora is the most angelic little baby ever, not a fuss every time we take on of her siblings to the hospital. Elora, when you're old enough to read this, YOU ARE AWESOME :)

Hope waiting with mommy to go in to surgery

Hope went in to have her adenoids removed as well as having some auditory brain stem tests while she was under general anaesthetic.

Although the day was both physically and emotionally exhausting, the emotional battle actually started the previous week with us having to fight with our medical aid to cover her procedure. Unfortunately, that battle has not yet been concluded, and it means if we don't get special concession for Hope, our medical savings are almost depleted for the year now because her special brain stem tests were very expensive.

After sending numerous emails and making as many phone calls, I found myself completely despondent and dejected; it's like every incident that involves our precious little girl is met with massive resistance and lack of understanding. I balk at every time that I have to explain to yet another anonymous call center agent that my daughter has x, y, and z disabilities and additional health complications and risks. The agents try to sound sympathetic and understanding but they seem to also be scripted with certain responses and the lack of humanity and genuine empathy is gut-wrenching. Most of the time I just want to hang the phone up and cry in frustration. Why is it so difficult to just have people understand? This is a medical aid so it should be there to aid us, not to be an obstacle.

For now, at least, the procedure is not covered under the hospital plan even though Hope must be sedated and monitored by a full team of medical crew because of the high risk of complications because of her age and her physiological condition. Even the two page motivation letter from the specialist was not enough to sway medical aid.

It's just so frustrating and disheartening to feel like we have to almost constantly fight the ignorance of people - the same ignorance that we had until the middle of 2010 - and it feels often like it's a losing battle.

At least, at the end of the day, Hope's procedure - although it was agonisingly long (almost three hours) - was successful. She came out of the theater beside herself in anguish and had blood pouring out of her nose. She was scrambling and wrenching herself from side to side and it took us probably ten minutes to calm her down and stem the blood. Once she was calm, she managed to dose off in my arms.

In terms of the surgeries, her adenoids were safely removed (they were larger than normal so this should hopefully alleviate her breathing problems and mitigate any future infections in that region). The doctor did observe that her tonsils are abnormally large (but we are sincerely hoping they never need to be removed, we had to endure another terrible waiting period in the same ward as last week with all the other parents whose kids came out of surgery. It was nearly impossible not to cry alongside the other parents at the traumatic experience they were all going through; some even came to us wiping away their tears and asking hopeful enquiries about how long the pain lasts and we could sense they were just asking us to tell them it would get better by tomorrow).

The auditory brain stem tests revealed that she has no significant (or remarkable) hearing issues. This last bit of news has come as a complete and splendid surprise! I sat with Hope wrapped up in my arms when the doctor told us this and I just marveled at how well Hope is actually doing despite her condition - she has a healthy heart, healthy hearing, and nothing else we can see at this stage that is out of sync. Really grateful and relieved! I can't even explain how relieved we are! Even the doctor was surprised that we expected the worst, but I think we are just used to bracing ourselves for further fights and struggles for Hope, so this really was an unexpected and blessed surprise.

Hope is resting at home and this morning seemed more like herself, although admittedly I did have to leave for work so anything could be happening now but latest reports are that all seems to be fine and she will be back to school tomorrow.

A reminder of a parent's love

Arthur puts on a brave face as
he waits to go in for surgery

This morning we took our little hero, Arthur, to the hospital to have his tonsils and adenoids removed.

Such a brave little soul - mom gave him a good preparation speech about what was going to happen at the hospital and we both have been telling him for days that the doctor would fix his breathing and snoring. We didn't go too deep into the sore throat after the surgery but we got him very ready for the actual trip to the hospital.

I've had to take my kids to the hospital a number of times - Arthur's near-death experience with the aspirating of breast milk into his lungs, Hope's near-death experience of swallowing a cowrie shell that lodged in her esophagus, Hope's grommet surgery, Arthur's broken leg - it's almost like second home for us but that never makes it any easier.

Today went smoothly at the beginning but while we were waiting in the main ward with the other parents whose kids were in ahead of ours, we started to experience the impending distress as one by one the other parents' kids were brought back from theatre, screaming, crying, wailing, and in a heck of a lot of distress. I sat quietly, observing the looks on the other parents' faces as they shifted from anxious waiting, to relief at seeing their kids, to frowns of despair and concern as their kids practically leapt into their embraces from the surgical gurneys.

The sounds in the ward quickly grew from anxious silence to horrendous weeping and wailing that resembled an emergency room after an earthquake. Such was the tumult in the ward that the emotion became too much for a mother sat next to us and she began to sob, even before her little girl was brought out to her.

Kat and I had an anxious wait for Arthur because he was forth in the queue from our doctor's surgery slate alone but when he finally was out of surgery it didn't take a moment for us to recognise his screams. The little boy was in such distress that he was fighting the vice grip of a little nurse who had given up on the idea of a gurney and was trying her best to race him to mommy before he erupted into absolute hysterics (which, by the sounds of things, was more or less achieved at that moment).

Arthur in mom's loving embrace

It took what felt like an eternity to get Arthur settled and the whole time he was sobbing and trying to stammer out all the things that were upsetting him (the blood in his nose, the drip in his hand, the pain in his throat, the loneliness of no mommy or daddy). During that period, while Kat was holding him tight, I yet again experienced the bittersweet emotions of being a dad.

My son was in anguish and there was practically nothing I could do to help him. I wanted to hold him but he wanted his mom. I felt his pain and his fears and I wanted to reassure him but he was in hysterics. I wasn't able to make the pain go away and I wasn't able to stop him crying and every time he let out a wail of misery I felt the full force of that desolation resounding in my soul.

Finally get some time with my little man

It's hard to describe unless you've ever been a father or a parent but for me I both love and hate those moments. I hate them because there's nothing I can do to make the moment less of a nightmare for my child as I share emotionally in each and every desolate moan.

But I also love those moments because it reminds me of a love that I have that I so easily lose sense of during the day-to-day monotony of trying to earn a salary and keep the house afloat. It's also at these moments that I have a brief reminder of what God must have felt like to effectively watch helplessly as his son died on the cross, or how God must feel each and every time one of us does something stupid that hurts or harms ourselves or others in the world. It's a sober reminder of what our love relationship is like between parents and children, and also of just how much God really loves each and every one of us and how massive a sacrifice it must have been for him, the one in total control and with the power to fix anything, to let go of the control and let things take their course...

It's the toughest moments that remind us of why we signed up to be parents in the first place and I wouldn't trade any of it for anything

Brave little Arthur wheeling his little sister out
a few hours after his surgery

...

Poor effort, Bryan

It really is lame to have a blog and never use it.

I always vowed that my blog/s would not reduce themselves into "I was here" headstones to digital deathbeds...

A lot of people use Facebook, Twitter, etc. to blog their lives but I'm old school and I will do my best to revive (again) this blog. Hopefully, if for no-one else, my kids will read this one day and laugh at the good times and cry at the sad times... or cringe at the embarrassing pictures :)

The stale state of this blog is a poor effort, indeed, Bryan... poor effort.

Are you aware? Today is World Down Syndrome Day!

For many in South Africa, today is Human Rights Day - the day we are all meant to remember the Sharpeville massacre and general human rights. How poignant that today also is the International Down Syndrome Awareness day.

Down Syndrome occurs with people who have an extra (3rd) Chromosome 21.

To remember this, 3/21 is the international day to mark Down Syndrome Awareness.

Please spare a thought about people with Down Syndrome and how you react to and treat them. Prior to becoming a (incredibly proud) father of a little girl with Down Syndrome I was probably one of the most ignorant and prejudiced people about the condition and people with the extra chromosome. My eyes have opened up completely and I am totally aware, as we all should be...

People with Down syndrome can live a happy life.

Together we can make it possible.

Our family +1'ed ... explained

Okay, so I know it's been a long time since I updated this post and I know most people reading this already know the latest news but for posterity's sake, I am giving the full picture here - as a studious parent, I blogged my thoughts to myself and this is an abridged rendition of those thoughts.

I first learned that we were expecting another one (or more) on the weekend of the 22nd. Kat muttered something while I was half asleep about thinking she's pregnant.

I was kinda muted about my response but also very keen. We weren't 100% sure at that point so it was a 50/50 because the second line was so faint on the pregnancy test. I recalled last time around was similar so I was fairly sure it was a yes.

As the next few days passed it became more of an exciting reality (much moreso than the first time around) probably because I know what parenthood is like. Kat BBM'ed another test picture and confirmed the initial test and it was then official in my mind.

Am thrilled Hope will have siblings but also worried this will mean our poor little adorable girl will not get 100% of our attention, although I know she'll still get 100% of our love.

I suspect it's twins, a boy and a girl, but have no concrete knowledge of this. We shall wait and see. A little Jed and a little Joanna would be awesome ;)

On the 7th of February we had a big scare - Kat suffered some minor cramping on Sunday night as well as a small amount of spotting but it was more than enough to have us concerned. On Monday she experienced even more cramps and then after a while she felt absolutely fine - and that was the worst part. She didn't feel any of the usual symptoms of pregnancy - she felt 100% fine all of a sudden.

The emotions going through your head when you think you've just lost your baby are hard to describe. Although our baby was very new he / she had already become so very precious to us. We were scheduled for a scan on the following Monday but the painful wait was almost too much to bear especially because we wouldn't know what to expect when we have the scan.

Obviously the one thought that went through our minds is that the miscarriage is a response to a genetic anomaly and we may be getting a foretaste of the future attempts at having children.

No sooner had we settled on seeing the doctor the following week when the doctor phoned and told Kat to come immediately to his office and understandably that was more than just a little bit of a freak out for us.

We were braced for the terribly sad news that we had expected - in fact, the night before we had kind of already accepted (although not understood) the outcome. Where we expected to see a sac and embryo with no heartbeat we instead found, to our amazement, everything was fine and little Baby J was alive and "kicking".

The night before Kat read a verse that reminded us that God can resurrect people and even though we expected our child to be gone and don't know His plans, we still knew that there was a plan. What happened between then and the scan we can't say for sure but we ended up being very happily surprised!

I seriously expected to see an ultrasound with a still form with a silent heart. I felt totally shattered and unprepared. Instead, without any warning, the doctor showed us a 5.7mm life form with a beating heart and I just squeezed Hope tight and wanted to cry with relief. 

Unfortunately it wasn't the last scare we had - on the 10th Kat had some serious bleeding and Kat was told by the doc her progesterone levels were very low and she was a high risk for a miscarriage. She was exhibiting all sorts of miscarriage symptoms (sore back, bleeding [not spotting]) and after doing some reading on miscarriages etc. we started to wonder if perhaps this baby was genetically anomalous and this was nature's way of purging the non-viable baby. We were given the option of taking progesterone supplements to boost her levels and most likely preserve the pregnancy but we were struggling with what decision to make. Some family members were saying "let nature take its course" and we were afraid that our child may have serious genetic defects and we would be preserving their existence when normally they wouldn't survive. 

The moral dilemma for us was heavy on our hearts and we had the history with Hope weighing heavily on our decision. Should we do what we can to save this baby? Do we assume nature should take its course? It boiled down to one thing for me - if we knew this baby was 100% fine we would not hesitate to do whatever we could to save the baby; the fact that we are doubtful of his/her genetic composition, we are starting to consider alternatives. I decided that it shouldn't hinge on what-if's but that we would love our child regardless and as parents we should do everything to fight for our kid. In the end, with much concern and uncertainty, we decided to take the supplements.

A week went by and we had no knowledge of whether the supplement was working or not. We wanted to believe Baby J was still with us but we were resigned to the possibility that he/she had gone. It made enjoying the pregnancy a bit difficult with a hollow uncertainty hovering over us again. On the 20th Kat started to see old blood which meant she was still bleeding internally and we still had to wait until the Wednesday scan. Kat didn't feel at all pregnant and I just expected now to find a much more developed baby corpse. It was dreadful.

After we had our scan I left feeling totally dumbfounded and in shock (a good shock). Baby J was alive and well and we were going to have a baby!

The most amazing news to know that after all the early trials our baby was well on the way to growing healthy and strong and we were totally in awe of the blessings of another child and the journey we had gone on to get there. Still not knowing for sure if s/he had any genetic complications, the mere fact that s/he was alive was all that mattered.

Even more amazing news - and funny coincidences - were to follow soon after that...

Hope moment of the day

So today I was working while Nana looked after miss Hope and I heard Nana going "Nooooo Hope" and ran out in time to see the end of Hope's tumble down the stairs. Got a big fright and so did Nana and Hope but after lots of wails for about 1 minute, Hope looked at me and smiled so I knew she was okay...she went back to wailing for 30 seconds and then decided she had landed in a new world and it was time to explore the guest toilet seeing as she had made it down the stairs :P Phew kids are scary!
Sent via my BlackBerry from Vodacom - let your email find you!

Hope moment of the day

Today Hope choked on an apple wedge, and after the drama and we had both recovered and stopped crying - I stuck her in her high chair with some raisins so I could keep an eye on her while I finished prepping supper. She very carefully and surruptiously put one raisin at a time on the chair below the tray with occasional ones being sneakily flicked to the floor....I guess she wasn't hungry but didn't want to be rude ;)
Sent via my BlackBerry from Vodacom - let your email find you!

Our family...

... We've just +1'ed this.

Today is 3.21 ... Are you aware?

Today is 3.21 2012.

Do you know what significance 3.21 holds? Until Hope arrived in our lives, nor did we. You see, 3.21 is the International Down Syndrome Day. The date is significant because people like Hope were made with an extra 21st chromosome. Amazingly, that's it. Just one extra chromosome and yet in so many ways people like Hope are so extraordinarily different to the rest of us.

Before Hope I probably wouldn't have ever bothered to find out more about Down syndrome or what it means. Before Hope I probably would never have given a Down syndrome person a second thought. Before Hope my perspective on life was pretty simplified and linear. Before Hope I was an ignorant fool.

Hope has opened up my eyes to a world that's existed since the dawn of man but most of us don't even pause to acknowledge even exists. For me, before Hope, Down syndrome was a passing 'thing' that was more a quirk of nature than a part of humanity. Now that Hope is here, Down syndrome has become a hard-and-fast fact of life - I notice people and circumstances I'd never really considered before. I connect with people on a spiritual level that the old Bryan could never understand.

Unless we open our eyes and try to understand the 'other side' of life that happens around us we'll remain deprived of a deeper understanding of life.

Don't discard people with Down syndrome just because they seem slow or different - in many ways they're actually a lot more like us than we realise and besides, even if they were different, they didn't choose to be made with an extra chromosome so why should we ever have the right to choose whether they live or die before they're even born because 'life is better for them' not being born?

Hope has shown me how much just one extra chromosome can mean to a person's life, and in almost every case I've come across, that extra chromosome makes them just that little bit better than the rest of us where it really counts...

Hope's moving up to her ejector car seat!

Barely 14 months in and Hope is being upgraded to a sport ejector car seat with side impact bars, racing straps and a bright orange glare.

Let's hope this doesn't give her a penchant for fast cars later in life...

Hope the Hippo recently turned 14 months!

I can't believe it's been 14 months since Hope was born!

This is a testament to how fast time flies!

Here's a picture of what our little angel looks like at the moment :-)

Happy five year anniversary to the (New) Johnstons! Wait ... That's us!

... And THAT is NOT us!

Charming card, Kat ;-)

Morning brunch with the (new) Johnston girls ... AND A WEDDING!

Attempting to get some sun for a change (the weather here has been somewhat erratic lately), we've headed off to Bloomberries (at Burgess Nursery) and we've been treated to a Saturday afternoon wedding!

How much fun!