As you can tell from my many….MANY….blog entries, our Sam is still not looking too favourably on this whole sleeping-during-the-day nonsense. In fact, it’s become such an overwhelming problem that I have recently diagnosed him (yes…of course I am qualified) with SDI, being Selective Daytime Insomnia (naturally). The reason why I say it’s “selective” is because, miraculously, when he falls asleep while we are holding him and don’t put him down in his cot, this ferociously debilitating condition completely disappears and he’ll nap for a good hour or even two. However, dare to wander down the passage, in the direction of his cot and the second you start bending over to lay him down, those precious little eyelids start flickering and before you know….nap time is over!!! If I didn’t know any better, I would even say it’s become like a game to him…last week, as usual, he fell asleep in my arms and if his Nestargel was the self-making kind where you just put all the ingredients in the kitchen next to the stove and return in thirty minutes to a jug of ready made formula or if his bottles were the self-cleaning kind with the same concept…..I would have been more than happy to let him sleep in my arms. But alas, neither is the case, so I quietly and deftly (well..kind of) got up and ever so slowly walked to the room, my heart racing every time I made the slightest noise..not even breathing, in case that woke him…but as I bent over the cot and started to lower him, this angelic but victorious smile appeared on his face and next thing those big blue eyes opened…and there we stood, me bent over the cot in mid-air not sure whether to go up or down…and little Sam..oh-so pleased with himself. If it wasn’t so exhausting, it might even be funny…okay, well it is still a little funny, sometimes.
So…the most sleeping we manage during the day is maybe ten, maximum twenty-minute powernaps….but (again)…alas…our Sam has brought a whole new meaning to the POWERNAP concept. Where I always thought a powernap mean sleeping for at least thirty to forty-five minutes…Sam says MINUTES…SCHMINUTES…to that and has adopted a whole new ONE MINUTE..powernap. Of course, every day by late afternoon he is a real ol’ grumpy smurf so any kind of task like, feeding, bathing, nappy changing, etc results in his usual hysterical, screaming fit. We were midway through one of these episodes last week (or rather Chris was as he was holding him at the time) when after vigorously fighting the sleep-monster, Sam eventually fell asleep mid-scream in Chris’ arms. Well, we didn’t even have time to breathe a sigh of relief…we only got as far as….S..I..G (which took about 45 seconds) and next thing this awesome smile appeared on Sam’s face and those big eyes opened and there, right before our very eyes, lay this seemingly well-rested, ready-for-action, happy little boy. The problem with this wonderful powernap is, if you happen to leave the room for a minute or two, you don’t know whether the nap has happened or not…it can literally go by in the blink of an eye.
Anyway, Sam obviously overheard me complaining about this and so to teach me a lesson about learning to appreciate what he DOES do instead of mulling over what he DOESN’T…after doing quite well with his night-time sleeping, the past few nights he has started waking up at 1am and, let me tell you, it’s been a lesson well-learnt. SWEET DREAMS EVERYONE!
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
