SAM...MORE THAN A CONQUEROR: Okay, so I was wrong!

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, June 13, 2011

Okay, so I was wrong!

So, there's a whole new ailment bugging Smurf...in the form of a little RSV with a touch of pneumonia thrown in for that "Aaawwwhhhh" effect. Firstly, I'd like to say a hearty THANK YOU to our medical aid service provider (for fear of some kind of legal action I will refrain from outrightly revealing their name, but will tell you that there is a channel on DSTV with the same name - now I know our South African readers will follow) who, even though born with lung membrane disease and having a congenital disorder which makes him susceptible to respiratory disease, do not feel that Samuel is a candidate for another course of Synergis,which course consists of five/six injections costing approximately R10,000.00 EACH!!! So affordable for the average family off the street.

Secondly, I would like to thank whoever it is that is responsible for instilling the "Oh Woe Is Me" virus within Luke's system, which virus somehow interpreted me asking him to try and limit his presence in the living areas of the house in order to prevent him contaminating the rest of us with his RSV and bronchopneumonia, as a personal attack on his character and a completey unjustified attempt to punish him for some unknown reason and, thereore, rendered my request as completely invalid. So loving life with a teenager at the moment...thankfully we've only sixteen months left until we're done with this stage. Oh No! Hang on, he's male...better add another five years on to that! LOL! Only kidding - just a bit of tongue-in-cheek there, guys!

All jokes aside, Sammy is one sick little smurf. Dr B advised, with written instruction I might add (gotta love the guy) that should there be no improvement by Saturday afternoon we should rather take Sam through to be admitted. However, even though it appeared at numerous times as though Sam was actually getting worse, we decided to push through at home because with a little man whose sensory defensiveness is so severe that it effects even his gut, the trauma of a hospital stay can sometimes completely obliterate the benefits. I have resigned myself to a decision that, should there be no improvement by this evening, we should take him in to be admitted.

Oh, and have I mentioned the fun we'll be having in a couple of weeks time? Not? Well, here it goes....I am, so far, undergoing a tonsillectomy and a little procedure to re-shape the cartilage in my nose in the hope of trying to overcome what has effectively been an uninterrupted, sixteen-month-old battle with sinusitis and tonsilitis. I underwent a CAT scan this morning to determine whether I have something funky going on in my sinus cavities as well, which remedies will be added to the procedure. My ENT feels that having my tonsils out though is a must as they are making my whole system toxic. I was advised years ago (like about twelve or so, but whose counting) to have them taken out, but after hearing from a friend how extremely painful it was to have it done as an adult decided that a twenty-five year old woman having a tonsillectomy seemed far more inconvenient than a prolonged relationship with antibiotics. Now I am thirty-seven year old woman having a tonsillectomy and thinking what a jack@** I was!