Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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 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 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!


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