SAM...MORE THAN A CONQUEROR: Full Circle

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)

Friday, August 30, 2013

Full Circle

As Sam's sensory fears became more and more challenging over the past two years, it was not just his sitting and basic daily mobility movements that required some creative tactics but so too did his physio sessions. When once Heidi had no problems stretching Sam on the wedge on the mat, this became an impossible task. Up until a few weeks ago, if you laid Sam on the floor, or on anything too close to the floor, he became so terrified that he would just not move...not a muscle...not a finger...including his lungs. He simply would not breathe. His arms would be thrown out in his still-very-present "startle reflex"and he would lie there frozen until you picked him up. Now while the startle reflex still rears its head quite often (which has left both Heidi and I teary eyed after its resulted in a frightened little hand connecting accidentally with our noses) it's definitely toned down quite nicely. And so too has Sam's anxiety about lying on the floor. I think I might have blogged about this already, but a couple of weeks ago I had no alternative but to lie Sam down on the floor to change his nappy at a friend's house....Sam was so scared that I had to keep rubbing his tummy while changing him to get him to take a breath. I decided that we honestly just can't go on like that and so every day since then changed his nappy on the floor at home. At first Sam will still get a bit of a fright but within seconds now relaxes and let's you carry on, so 3 physio sessions ago I suggested Heidi try stretching him on the wedge again and not once since then has she had to resort again to placing him on one of the adult physio tables (which for some reason, even though narrow and quite high up, was less frightening for Sam) to do his stretching. It might seem like a small victory, but it's actually a pretty huge one for us. Sam's sensory problems have pretty much controlled much of our lives over the past couple of years so to see at least some of them improving brings refreshed hope. We've not yet reached the point where I can use the vacuum around Sam and I still have to walk around in the middle of Winter with wet hair as hairdryers are most definitely still on the v-word list but it's really not too important right now. Yesterday while playing with Antoni, Sam did not feel me moving away from him while he sat on the floor (which usually causes that "plank reaction" as soon as he feels I am no longer supporting him) and sat for a good 15 minutes before he got onto his knees and crawled away as if it is something he's never had an issue with.

This picture is from about two-and-a-half years ago just before Sam had his first attempted testicle repair, which was when his sensory challenges took a major dive.

Today...not in the least bit worried about lying on the wedge and not only breathing but doing some pretty awesome happy-flapping too.

It has been a really loooonnnggg two years :) Watching Sam lose milestones which had taken him so long to achieve, like sitting and pulling himself up into a standing position, etc, really took the wind out of my sails. How could we move forward before we found ourselves back at that point? Well finally, two years later, we are here now...and it feels pretty darn good...and really very exciting. I cannot wait for the weather to clear up so we can get out there! I don't really know where "there" is but with Sam being able to walk short distances while holding my hand it could be feeding the ducks at the dam, standing watching the kids on the playgym at our local shopping centre, taking a slow walk to the gate at Meg's school :) This morning Sam sat on one of the physio blocks while I put his shoes back on after his session. When finished I held out my hand, he took it and pulled himself up and we walked to the door. It was such a natural process, something so many folks take for granted. When next you happen to be walking alongside your little one, take their hand and for just a few moments walk WITH them...it is a joy, a heart's desire, too many parents will never have the opportunity to experience. I am thankful for feeling that joy today xxx