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)

Saturday, January 22, 2011

That Sneaky Little Smurf

Our little conqueror woke up full of beans this morning :) It can sometimes take Sam a good hour or more from the time he starts stirring in the morning until when he eventually wakes up and this morning was no exception. Sometimes he's in the bed with us when he wakes up but last night he stayed the whole night in his cot. Hanging from the top of the cot is a little flower mobile (yes, I know, a bit "girly" for such a tough conquering smurf - but the flowers have lovely little smiley faces on them so that changes everything) and we don't need to peep over the side of the cot to see whether he's moving because whenever he does, the flowers start shaking like crazy. So this morning he stirred for a bit...then one little arm stuck straight up in the air for a minute....then he started "oooohhhhiiingggg" to the flowers while starting his morning smurfercising (kicking the sides of the cot). Chris and I lay watching the flowers, waiting for him to start moaning because we had not put him in the bed yet but instead the flowers suddenly went still and the "oohhhiiinnggg" also stopped. No way! What are the chances he would have fallen asleep again? Aaahhhmmm...NO CHANCE! But peeping over the side of cot was two of the most gorgeous blue eyes ever, watching us in utter bewilderment as to why he was still lying in his cot. We had such a good laugh - Sam has recently occasionally managed to find himself on all fours so it's great to see him gaining some strength in those little arms and shoulders.

But anyway, that was not the highlight of the day...although it was definitely an endearing start. I think I've mentioned before that Sam is not able to use both of his hands at the same time, he either uses one or the other which means that he can't do things like hold his little toy drum in one hand and bang it with the drumstick in the other, he can't hold his bottle because it's just too big to fit into that one tiny hand and, perhaps the most disappointing for me, he cannot clap his hands and, oh my gosh, I so L.O.V.E. it when a baby claps their precious little hands together and that's something I've really missed seeing Sam do.

Sam loves music, or even better, music video's of Barney or Hi-5, but especially Barney's Clapping Song. If I tell you that we watch Barney's Clapping Song a minimum...and this is an absolute minimum...of thirty times a day you would think I was exaggerating a little, but you'd be very wrong. Thank goodness we have three different versions of the same song (phew) which does help a little but that song has been our WAITING saving grace...waiting for x-rays, waiting in the doctor's rooms, waiting for Meghan at school...you see, I cleverly recorded a copy onto my cellphone as well so wherever we go we always have Barney to resort to. Now as much as what Sam loves this song, all he ever really does is smile and occasionally do some flapping when its on, he's never made any kind of inclination towards trying to imitate what he's seeing. Today an amazing thing happened...yes, you've probably guessed by now - Sam clapped his hands...but that's still not the highlight, it's WHAT initiated his hand clapping. Chris was walking around the house carrying Sam and singing to him and all he SAID (without any visual encouragement as Sam was facing forward) was "Sammy, clap hands"....and? Sammy clapped hands!! You could have knocked us all over with a feather, I can only imagine what the neighbours were thinking about the excited squeals emanating from every open window and door and it didn't stop there...at least every twenty minutes someone was asking Sam to "clap hands" just in case he'd managed to forget. Let me tell you, he's made up for a solid twenty-month's hand clapping in just one day.


Try as I might, I just couldn't capture the two little hands actually coming together




 Precious little boy :)

But wait, it doesn't end there. Later this evening we were sitting with Sam singing "If you're happy and you know it, clap your hands...." but we only do the first two verses to keep it simple (the second obviously being "...stomp your feet"). At first Sam didn't respond to the handclapping part but eventually started catching on, so Chris decided to skip the "stomp your feet" to focus just on the clapping, but Sam automatically lifted his foot to carry out the second action.

There is a slight low-note in that we found a little lump last night under skin at the top of Sam's cut and just can't imagine what it could be...it's much wider than what it is long and is not attached to the scar at all, as it moves independantly. But there doesn't seem to be any other indication that something might be wrong so are trying not to focus on it too much until I can chat to Prof F about it on Monday (hopefully). And it does help still being deliriously happy after all Sam's little conquests today - they make the more "challenging" moments of the past couple of days seem oh-so insignificant.  

2 comments:

  1. WOOOOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOO
    WOOOOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOO

    We are doing the happy dance with you!!!!!!

    WOOOOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOO
    WOOOOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOO

    What an amazing day you have had!!!!

    ReplyDelete
  2. Hee Hee...I just so knew YOU would get it Jax! Love you guys!

    ReplyDelete