SAM...MORE THAN A CONQUEROR: Sam luvin' birthday parties!

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, March 19, 2012

Sam luvin' birthday parties!

It was Meghan's birthday on Tuesday and even though I vowed that birthday parties were a no-no after the tenth year, here I was planning a tenpin bowling session for nine kiddies. We had originally planned to go ice-skating, but one of Meg's friend, Erin, has been through quite a great amount of trauma over the past few weeks after a nasty ice-skating accident, which has left a finger on her right hand with a pin in it (identical to the pin Sam had in his thumbs after his corrective surgery) and securely splinted till after Easter. Truth be told, I cannot say that I was even remotely disappointed that we rather settled on tenpin bowling instead after a particularly exhausting ice-skating birthday party not too long ago (which could well have been the party after which I took the "no more birthday party" vow).

Had Sam not been ill, we had planned on taking him with to the party as he adores being around children but luckily enough for him, we made it home a good hour before all the children were to be collected...and boy did Sam have an absolute ball with such an awesome audience....

At first you can't spot the little smurf....

But there he is....instructing everyone in a game of "Copy Sam" which game is derived from a Teletubbies episode (can't believe I used to complain about Barney) where a little girl leads a group of kids in Copy Me! Sam LOVES this game and insists on all-round participation, regardless of where we might be....a doctor's room, hospital, therapy session...if he can see you, you better copy Sam :)

And, of course, there had to be some twisty-flappy movements involved.

Group photo - with the exception of the Birthday Girl who was outside delivering an extremely believable rendition of "It's my party and I'll cry if I want to!" This year was definitely D.E.F.I.N.I.T.E.L.Y the last birthday-party year!!

I adore Meg's group of friends though - they all are really wonderful with Sam. When children reach the age of ten/eleven, that's quite often the age around which compassion, consideration and respect for others either flourishes or becomes obvious in its absence. Meg's friends will ask genuinely inquisitive questions about Sam's development (like why he doesn't walk, etc) but I have never heard any of them uttering an unkind word about Sam's behaviour, appearance, etc. or anything else. I had an unusually large audience when changing Sam's dirty nappy on Saturday afternoon and Sam was offered many words of sympathy when his "battle scars" were noticed.

I think it's really important for siblings of special needs kids to know that their brother/sister is accepted by their friends. It must surely play a huge role in their own acceptance of their sibling...I would be devastated if Meghan was faced with a situation where she was ashamed to bring friends home because of Sam, or afraid of what reaction her friends might have to him. I know its still very early days but, thankfully, so far so good!