SAM...MORE THAN A CONQUEROR: Words and Steps

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)

Thursday, December 19, 2013

Words and Steps

Having just finished supper one evening last week, chinwagging about this and that, Brampies wondered out loud what Sam would be like if he did not have RTS or SPD.

I said that I think he would be very intelligent, quite cheeky, have an excellent sense of humour, be rather mischievous, extremely demanding and strong-willed but loving and affectionate too, you know, kinda like he is now....just with words and steps :)

At the moment though, words and steps are not flowing in abundance. It's been more than 6 weeks since that solitary word and not a single one more. Sam had quite a major fall with his walker, which I thought would put that one to rest for a while too but, both strangely and thankfully enough, he was quite happy to use the walker again the very next day. Sam was doing quite well with walking while holding one of our hands and then seemed to become quite fearful again. We still try at least once a day to give it a go...sometimes it works, sometimes it doesn't. This evening I was in the bathroom, getting Sam's bath ready and out of the corner of my eye I saw a little person...just a single, little person...walking round the corner. Honestly, my heart simply stopped...I couldn't move, couldn't blink...for a millisecond, until I realised that the single, little person's hand was actually attached to his, only then visible, Dad's hand. Disappointed much.

We are two weeks into our six week school holidays here, with the 2013 school year having ended on the 4th December. There have been plenty of award ceremonies, concerts, recitals and all the other year-end happenings...most of which Sam did not tolerate all that well. He lasted all of about two minutes into Meg's ballet recital before Dad had to head home with him, screaming and pulling hair like...uuhhmm, a kid with SPD actuallly. At least I got to stay till the end #Yay

A recent addition to Sam's list of "hostile"sounds is water. The sound of the waves at the beach now freak him out, the sound of a sprinkler going, the water hitting the ground when Brampies or Dad waters the lawn. No less alarming, was the sound of the garden house filling our little pool for Summer. So much so that Sam had a mini-anxiety attack every time we needed to walk past the pool (now full) over the next few days. Until we managed to coax him in of course. Then every time he saw the pool he asked, with his most charming sign language, to swim. Even on the way to OT one not-so-sunny morning at 9am. And of course the moment he spots Meghan taking a dip, he requests so desperately to join her that there often isn't even time to grab his swimming trunks. Meg, being the awesome big sister that she is, has been very accommodating so far...

And then there's this...

The little smurfy dude has taken to watching his Mr Tumble dvd's like this. Any time spent off his knees is welcomed, nevermind how darn cute he looks. He hasn't quite tried to "sail" along the furniture yet, but just having him feel comfortable enough to stand up again is quite huge. Baby steps, right?