Okay….well maybe not zero to 38.8 in twenty seconds, but definitely at least 36.8 to 38.8 in twenty seconds….okay maybe not in twenty seconds…more like half an hour. No, I am not talking about the speed at which I am picking up weight (then it would be from 50 to 100 in twenty seconds (kg’s that is), or pretty close thereto). We’re talking about Sam’s temperature on Thursday which, after two convulsions, took us to hospital where we spent that night and the better part of Friday. So, our little Christmas Elf (more about that later) decided that now was as good a time as any to catch a viral infection and throw in a little pneumonia just to make it more interesting. As always, Sam absolutely loved the change in his environment and with the added pleasures of oxygen, a drip and three really uncomfortable looking “probes” (which kinda looked like those clampy-thingies you attach to your car battery when needing to jumpstart it) made it a very challenging thirty-odd hours. But the awesome nurses at the unit made us as comfortable as possible and Sam has a great paed who always makes sure he covers all ground where Sam is concerned and takes his time when speaking to us and seems really concerned, not only about Sam’s welfare, but also with Chris and I, which really makes our lives so much easier.
So, our little man is feeling a lot better today and although we are still having to battle with getting his antibiotic down (loads of fun and games I tell you, which usually involves some serious gagging, screaming, vomiting) he had an excellent night last night and slept from 9pm until 5am this morning – yahooooo!!! But, no, this time I am not foolish enough to say “hopefully the start of a new routine” because I said that the last time and it was a one-in-a-month happening. Daytime sleeping is still not great, but hey – I can live with that as long as he sleeps at night.
Sam was meant to go in for his adenoids and grommets on Thursday, but we are going to postpone that to give him a chance to recover completely. We are also giving neuro-therapy a skip today as well.
But, let’s backtrack a little, Saturday before last we attended our annual Church Xmas dinner and Sam wore a stunning little Christmas hat which my sister bought for him with “Baby’s First Christmas” written on it – it was soooooooo cute and of course awarded him loads of attention when we walked in (pics to follow soon). The eating was a bit tricky (with Chris and I doing the usual eat-and-hold swap) but it was great to spend a wonderful evening of fellowship with our friends and also for me to be doing something remotely “social” again as my outings now seemingly only consist of medically-related appointments.
So things are slowly winding down now as all the year-end functions like prize-givings, concerts, ballet recitals, etc come to an end and the start of the five-week holidays begins. We are hoping to undertake a “road-trip” (my first ever at age 35 – blush blush) nothing major, just a two-day trip to my mom in Pearly Beach and then a couple of days with Chris’ folks in Stilbaai – Sam’s health permitting of course. We will first have to see how the next couple of weeks go – we have sort of prepared ourselves for having to cancel at the last minute if he does not seem strong enough, although the kids would pretty much be devastated I think, so we are holding thumbs…and praying of course…that it all works out okay. And of course we have checked…and double-checked…with all related parties that there is some sort of emergency room or doctor on call in both towns as they are both fairly small, quaint little towns a fair distance away from “bigger” towns.
HUMILITY
…..is facing the truth. It is useful to remind myself that the word itself comes from “humus”..earth…and, in the end, simply means that I allow myself to be earthed in the truth that lets God be God and myself His creature. If I hold on to this it helps prevent me from putting myself at the centre and, instead, allows me to put God and other people at the centre.
(Esther de Waal – Living with Contradiction)
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
