SAM...MORE THAN A CONQUEROR: HAPPY BIRTHDAY BRAMPIES!

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)

Monday, January 10, 2011

HAPPY BIRTHDAY BRAMPIES!

It was my dad's (aka Brampies) birthday on Sunday but, as always, Brampies was keen to keep it low-key so it was just us and Aunty Cammy and Uncle Damien having some tea and cake...and cake...and cake! But before we get to the Birthday Boy!

Sam and Dad messing around with his pirate patch he got in a Christmas pressie. If only Sam had two of those patches he could place one on each eye and might even be able to tolerate the sun.

We are having such a hard time with Sam's right leg again that it's really becoming quite frustrating and, to be honest, saddening. It's a whole lot of backing-and-forthing between the leg basically being pretty useless and sometimes looking like its on the mend, before Sam reverts back to not wanting to stand on it again. The saddening part is that sometimes he looks like he's going to use it and then the foot just doubles over....BACKWARDS! His toes just fold completely under him. The frustrating part is that I don't think anyone is really taking my concerns seriously - firstly, when I say that Sam doesn't want to walk anymore, I get this amused kind of look as if to say "Whoa Crazy Mamma - you do know the kid just started sitting, right? We doubt he was walking!" But for those of you in the know and as I've mentioned before, Sam loved being on his feet (think I've even posted a pic or two of him "walking" before) so there has to be something significantly wrong for him to change that now. And, yes, I know we've done x-rays and examined him and found nothing - but do we really just stop looking? Even though the problem persists?

Hey, how did that rant slip in there? Moving swiftly along....so we've always battled to find shoes that fit that gorgeous little left foot of Sam's. He had a lovely pair of Ug boots for Winter which had velcro on the sides and at the back so we could basically adjust them to fit each individual little foot, but other than those we've at least a handful of "hopeful's" lying in the cupboard. On Saturday we found a little pair of (fake obviously) crocs which also have velcro at the back and fairly wide soles and they actually fit so we promptly purchased them with the hope that, while wearing them, Sam could not bend his foot backwards. Unfortunately, having basically gone most of his life without shoes, Sam was not too chaffed with having them on his feet and immediately tried to scuff them off (boys will be boys!). But they still do look kinda cute!

Meg had the amost AMAZING surprise on Saturday afternoon. Her best friend, Danielle, moved away to another city in June last year and Meg was devastated although they are quite cute and still write letters to each other. On Saturday afternoon I heard Brampies calling to Meg that Danielle was at the gate and I though "Yikes Dad! Howse about you put your specs on for a change." (A side-step for later) But much to Meg's delight, it really was Danielle. Unfortunately her mom had lost my number but amazingly remembered where we stay and, even more amazingly, had she arrived ten minutes later we would have missed them as we were on the way to the shops. Thankfully, Smurf was not having such a great day and we were battling to get going. The girls loved having a quick catch-up, although it took longer to get them to part ways than what the actual visit took because they kept accidentally disappearing and there was a good fifteen minutes of begging for more time.

Sam's one good night last week was just that....one good night :) Although he has been going down with less fighting, he is back to thrashing around and tossing and turning most of the night. After a particularly bad night on Saturday, him and I decided to stay home from church on Sunday morning (because I had this crazy idea that he would sleep then?) Anyway, Sam's absolute favourite part about going to church is reading the bulletin, it's what keeps him occupied most of the time and someone always ensures that he has a copy (especially Uncle Augi). So, the first thing Sam spotted when Chris walked in the door was his bulletin and wasted no time in catching up on all the notices.......

Now, Sam has obviously been paying close attention (perhaps too close) to what his big brother and sisters try to get up to...you know, those classic scenes where the kids are lying upside down, half hanging off the couch while watching tv. Being the quick learner that he is, Sam has already mastered the upside down on Wilcon Bear position (Wilcon Bear being a gift from Uncle Willie aka William the Conqueror and Aunty Elspeth)......

The hanging over Daddy's leg position.....

And the perched on Daddy's tummy position. Well, it all makes for good reading, doesn't it?

On Sunday afternoon, after a serious lack of sleep, Sam had to borrow Aunty Cammy's shades just to keep the glare out a bit.

And finally, a picture of the Birthday Boy with Luke, Meg and Sam!

Sam is trying to copy the whole spikey-fringe thing Luke has going on......not sure he's wearing it completely right though!

The side-step : Sam L.O.V.E.S. de-spectacling Brampies, with just the flick of a finger he can have those specs off in a nano-second. But Brampies does not always remember to put them back on and half an hour later you will bump into him, eyes all scrunched up, forehead wrinkled into a hectic frown...wondering round the house totally befuzzled as to why he can't see anything. In fact, he's even left the house WITHOUT them and ten minutes later called to say he can't make out any of the road signs, traffic lights, other cars, hills, etc. Okay, so I exaggerate a little....anyway, and we've had to drive his specs through to him.