SAM...MORE THAN A CONQUEROR: Payton's First Birthday Party...Pics (At last)

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, November 4, 2010

Payton's First Birthday Party...Pics (At last)

Okay, so third attempt lucky - that's how many times I've tried to get this post out :)

As I mentioned last week, this past Saturday, 30th October, was Payton's first birthday party. And, thankfully, Sam managed to stay healthy enough for us to attend. We only managed just over an hour's stay, by which time Sam was becoming quite stressed & overwhelmed by the huge number of people there...yes, our Payton is one popular little girl! And it was also Shawn's (Payton's Daddy) birthday the following day so between the two of them it was a celebration of note. I reminded myself mentally the whole morning before the party "Remember to wish Shawn...Remember to wish Shawn." And did I? Of course not, how do you guys know me....it was only when we were leaving, with Chris, Meg & Sam already in the car and me running down the street to say goodbye to Jacqui, Lloyd, Matt & Nic, that I remembered to shout Happy Birthday! Tsk Tsk!

Anyway, Payton's mommy (Tammy) and Granny (Liz) went to so much trouble with the Minnie Mouse themed decorations and everything came out beautifully. Sam of course LOVED the Minnie ears and you could see him looking around expectantly wondering when we were all going to start doing the Hot Dog Dance (still one of his fav's).

Payton with her Uncle Kevin (who it turns out actually belongs to the same church as we do..small world)

As I said...Sam LOVED the ears - this was taken at home, several hours after the party.

As for the pics, Sam did EVERYTHING he could to make sure he didn't make it easy for us to get a good pic..which meant jumping through each shot. And of course, we got to see Sam's RTS big brother Matt, who had several other moms mesmerised by his beautifully gorgeous eyes...and for the first time, Mattie's little brother Nic who is so exquisite he could easily pass for a porcelain doll. My heart warms instantly when thinking about Jacqui & Lloyd and their precious boys, as I know for sure that I would be in such a different place without their friendship and support and the blessing of having them in our lives is sometimes just so overwhelming. So, yes, it was WONDERFUL to catch up with Jacqui & Lloyd as well.

Matt with the broken arm Jacqui blogged about recently. It was so cute to see him signing, cast & all, and of course to hear him speaking. And when I gave him a goodbye kiss on his cheek, he rewarded me with a "Mwah"

That's unfortunately the only pics we got as our camera's battery was running low.

We had a really good time - thanks Tammy & Shawn.