SAM...MORE THAN A CONQUEROR: The "trio" together again.....

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, December 15, 2010

The "trio" together again.....

On Sunday afternoon we had the wonderful opportunity for our little RTS Trio (Sam, Matt and Payton) to spend some time together again, along with respective siblings Meghan, Nic and Tayla. Unfortunately I thought I had lost my camera after remembering to have last had it on Friday at Meghan's school, so I have absolutely no pics of the trio posing ever so charmingly on Tammy's couch while Jacqui entertained them by singing Matt and Sam's favourite Wheels on the Bus. As Murph would have it, I found the camera on Monday afternoon lying under the seat of my car.

As always, it was wonderful spending time with our RTS family, swapping stories and tips while Meghan and Tayla spent an amazing two hours straight in the pool. Thankfully there were no hair-pulling incidents this time :) Although there was a near-miss where Sam almost (again) grabbed a handful of Matt's hair, with me managing to catch him literally a split second before. The afternoon ended with Sam receiving the most exquisite pressie from Jacqui, Lloyd, Nic and Matt....a latches board. There could be no more perfect gift for our obsessive compulsive door opening little Smurf.

Other than Sunday's visit and a few sporadic visits to the shops, we have been pretty quiet this side. Sam is still not using his leg properly - on Sunday afternoon we tried to allow a few "normal" activities like walking, etc but by Monday it was back to the NEW normal use, which is treading lightly on his toes at first and then just holding the leg up completely. We have NT at 11:30 this morning so will bring Heidi up to date and ask for further advice. I have this niggly sense of worry at the back of my mind that perhaps it's related to his tethered cord and that the right leg is going the same way as the left, but Sam's doc doesn't think its a possibility so trying hard not to dwell on that thought.

As far as Sam's surgery goes, we are all set for 7:30 on Monday morning...we had a bit of a wobbly on Monday afternoon where for a short while it seemed as if we weren't going to be able to get Prof F, Dr B (the anaesthetist and, for sure, Sam's secret guardian angel) and an available theatre all co-ordinated. But Dr B reminded us once again why we think he is so awesome and, with Prof F's help and willingness to juggle his day and with Prof F's assistant, Cheryl, doing all she could and more, everything was thankfully pulled back together and at an even more convenient time than originally planned.

We are on Day 3 of the school holidays....just 35 more to go! This year Meghan had the most wonderfully caring and compassionate teacher, Mrs Rone Saaiman, who not only did an outstanding job in her capacity as teacher but really did make such a huge impact not only Meghan's personality and attitude towards school but on our entire family by being so understanding and willing to help where she could by accommodating me with parent-teacher meetings, keeping me informed of Meghan's emotional state during the more trying times with Sam, etc. As if that's not enough, she encouraged Meghan to educate and share with the class what it is like having a special needs brother and asked regularly about Sam's wellbeing. So, the scene we made our way through on Friday while trying to get to Meghan's classroom to say goodbye was a little unexpected but by all means quite understandable.....first one classmate walked, sobbing and visibly distressed, towards us, I asked what was wrong and she explained through tears that she was going to miss Mrs Saaiman. Gave her a hug and walked on. Another classmate approached also in tears, this time a boy. Pushed ahead amidst the other children, all laughing and dancing around at the thought of the upcoming holidays and festive season....none of them being Meghan's classmates. When we got to the classroom, the number of children - boys and girls alike - sobbing their little hearts out at the thought of not having their daily dose of their precious teacher in their lives was quite overwhelming and even had me fighting the tears away and I thought...WOW....how wonderful for this person to have touched these childrens' lives in such an unforgettable way. We will be thinking of Rone on her birthday on the 19th December while we are celebrating our slightly early Christmas Dinner!