Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Wednesday, November 20, 2019

In Loving Memory of Chrisna

I have started this post so very many times over the last 5 months. And then restarted it. And restarted it again. But, even though words have always seemed to find me quite easily...well, the written ones at least (and usually at bizarre hours like 02:00 in the morning), my words have failed me miserably lately as I try to find ones which could possibly do justice to this post. How does one recap the many moments...the joys, celebrations, challenges, fears, victories, despair, hope... which have filled our lives over the last (almost) two years? Well, you have to start somewhere...and starting with the life-shattering heartache which has made this blog so vitally important again, would be a good place to start.

Writing has always been an essential part of my processing of, well, everything. Since I can remember, I have always kept journals (often to my detriment as the essential need to protect my journals was seldom as important to me as the essential need to write them 🙈). More than just a way to record memories (which memories were in any case often rendered indecipherable, depending on the mood which had determined my handwriting), writing helped me streamline the whirlwind of thoughts and emotions constantly bombarding my mind. And then the digital era arrived. Yay for actually being able to understand the outcome of the processing I had needed to work through said emotional whirlwind bombardment! And although it was, sadly, nowhere near as therapeutic as huffing through a bunch of pages with a grip that left your words indented 30 pages down or as rewarding as the whimsical twists at the end of a "j" or "y" which left a sweet recording that much warmer and fuzzier, it was so much quicker (and clearer) to transfer your thoughts across a keyboard/screen. Well, after you had found the time to put the laptop on, wait for it to start up, sign into the blog, read through your previous post/s to make sure you weren't repeating yourself (as someone who has to occasionally check her calorie counter to remind herself what she had for breakfast so that she doesn't have the same for lunch, this was an important part of the process) and then, finally, start typing. See. Much quicker (?) And then along came Facebook and Insta and it was even quicker and more convenient to share a moment. Sure, you have to 'crop' some of those thoughts a little, like the unnecessary/unwanted parts of a photo. But who wants to read such lengthy Facebook posts anyway right? Plus there are filters people! Oh, the filters! Well, you know who would want to read all those lengthy posts of the last 22 months now? Me.

Our blended family came together in 2007 with no fewer challenges than anyone else's as we navigated each of our individual personalities through a maze of discoveries as we sought the common ground upon which we would rest the foundation of our unique family dynamic. In fact, adding a Lil Smurfy Dude into that blend just 22 months later, we probably had a few more challenges than many blended families. (Did you notice that "22" again? Yeah, me too. Now, if I still had a writing journal, I would have quickly scribbled 10 pages about the possible reasons and potential purposes that the number 22 might have had. Then I would have scribbled a few more pages about the significance of it taking "10" pages to write about the "22", so now there'd be an additional element to factor in. Aaaaaaaaand, now you know why my handwritten journal became too time-consuming).

On 17 June 2019 we lost a beautiful, cherished part of our blended family when Sam's sister, Chrisna, tragically passed away in a car accident, just a month before her crown birthday on 17 July. Desperate to hold on to memories and moments with her, we have spent many hours looking through old photos, revisiting her social media pages just to hear her voice in the occasional shared video, savouring every forgotten/overlooked picture newly discovered. There never seems to be quite enough to so completely saturate your mind that you miss her just a little less. Then I remembered my journals and spent many days reading through them, hoping for forgotten memories. But, as I stopped writing in them many many years ago, having (then) moved over to this blog which, as a public platform, made me cautious about what I shared, it has been pretty devastating to realise that, other than an occasional, briefly-captioned picture on social media, no longer do I have a place to go where emotions and sentiments can be revisited in a way which words alone have the power to indulge...words which would have recorded what a beautiful, caring, inspiring young woman Chrisna had blossomed into. How I looked forward to her time with us, how I loved our catch-ups about her friends and romantic interests, how entertaining it was to walk through local shopping malls with her when literally (and this is no exaggeration) every 3-4 minutes she was greeted (usually with hugs) by peers from her school, her church, her social circles, her many sport activities and often even rival sport teams as people went out of their way to connect with her, how amusing it was to walk along the promenade and notice how many (unnoticed) admiring glances she got or how an after-dinner stroll through the neighborhood on Christmas eve last year found us acquiring the company of an unbeknown to us young man who strategically made small talk with our whole family and then subtly gravitated towards the centre of his actual attention, Chrisna. Nowhere have we recorded how exciting it was to listen to her carefully-considered plans for her future, from how she planned on booking her learner's licence test on the day she turned 17 to the Degree she planned on studying for and her hopes and ambitions for where life would take her once she'd achieved it. And she feared no barriers or limitations, so achieve it she would have. Words which would have shared how grateful we are to have witnessed and been blessed by the grace with which she embraced everyone and how the knowledge that that grace brought with it a comfort in the knowledge that it would help guide her and her step-siblings towards a care plan for Sam should I, in fact, NOT live to my planned ripe old age of 105.

Those are cherished moments and sentiments which we can never get back, but which didn't all make it onto Facebook or Instagram. So I am leaving them here. Where I can find them always. And as a reminder that the abundance of unspoken words which we too often fail to share because we are too tired/afraid/proud/self-conscious/cautious may never have the opportunity to find their power.

❤️ How we miss her ❤️

A minute's worth of life...a trivial thought for some.
What difference would one minute make when your time with us is done!
But if that minute could share an overflow of the words within our hearts,
We'd be careful not to waste a second and would know just where to start.
Just one minute to say we love you, more than you'll ever know.
A love that's filled with admiration for the grace with which you'd glow.
A minute to say you amazed us with the woman you became,
With the adoration and respect with which so many voiced your name.
A minute to tell you proudly of the countless lives that you have touched,
A truth your humble heart would quickly dismiss as not that much.
A minute to say we miss you, more and more with each new day.
A yearning freshly fuelled with each forgotten photo that comes our way.
A minute to listen closely as you'd tell us not to fret,
Your unwavering zest for life just one more thing we can't forget.

A minute for one last chance to hug you tight and know you're near.
To have you sing just one more time
"Cause I don't care when I'm with my baby, all the bad things disappear"
A minute to share a promise that your life will remain our inspiration,
And that we will use each minute that we DO have with love-filled purpose and intention.









1 comment:

  1. I'm so glad to find this blog for Chrisna Nix.Writing is one of your talents and it's so cathartic that you can find the words to describe the emotions so so many people are feeling by this huge void Chrisna has left. It feels so very wrong that this happened and still unreal. I see the immense sadness in your eyes when we speak of her. This is one of the special ways you can keep her memory alive in your ❤

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