Sam - 6:42am
I've had a really peaceful night's sleep, despite the trouble it took to get me there. When I woke up yesterday afternoon it took me some time to realise that firstly, I was not in my cot at home or in mom's arms and secondly, I had all these pipes and tubes attached to me which just reminds me of that awfully long time I spent in NICU. The sister quickly gave me something for the pain but panic had already set in and it wasn't long before I'd crossed that inconsolable line, leaving me rolling and thrashing around in the cot in what could have appeared to be a comical rendition of the horizontal twist. Of course, my panic became everyone else's panic that I was going to hurt myself or, worse yet, cause a leakage of spinal fluid which is why it is so important for me to be lying flat and still. It was quickly decided to rather sedate me. While the nurse prepared the meds, mom was allowed to give me 50mls of milk...if you can call it that. It's actually more like trying to drink your porridge or a cheeseburger, as dad had to super-thicken the milk. As if that wasn't bad enough, along came mom with a syringe containing 4mls of seriously vile-tasting sedative. Now, if you don't know me very well you would think BIG DEAL! WHAT'S 4mls? And then I'd have to educate you on how I do NOT take any other liquid in my mouth other than my milk and, very rarely, some tea. So, 20mins and some choking, gagging and crying later the sedative was down the hatch. APF (Awesome Prof F) then came to check on me and I thought it a good idea to keep the folks on their toes a little longer, so by the time he'd entered the room and was listening to mom and dad frantically trying to explain that I really HAD been trying to wreak havoc, I lay sweetly and peacefully in my cot, the picture of gorgeous blue-eyed tranquility. Thank goodness for mom (who was secretly scanning the room in search of a hidden camera which might testify to their claims) restraint (or lack thereof) got the better of me and it was back to the horizontal twist.
If there's one thing I've learnt over the past 19mnths it's that parents sometimes take really long to train...I mean,there I was...dripped, cathetered and cut open, in a strange room, with strange sounds and strange smells and still I was expected to just quietly and calmly put myself to sleep, NOT in mom's arms, which is how I always go to sleep? Really? APF, being the APF that he is, then said that mom can hold me as long as I stay flat. Yah for me and YAH for mom. So, although it proved a little challenging logistically, I was soon in mom's arms and just as quickly fast asleep.
I am not sure what the rest of today holds but I do know that I have an incredible and divine God who watches over me...Who brought me safely and successfully through my surgery, Who has instilled his love and caring in so many which shows in the number of sms's and call's mom has received about how i am doing, Who gives mom the strength to care for me and face my challenges with me, Who has a whole team of angels watching over me...some in heaven, some here on Earth.
Mom - 2:30pm
Our little smurf has had a rough day, has been really uncomfortable and troubled since about 8:45am and has only now fallen asleep, two sedatives and numerous painkillers later. He also managed to desemble his catheter again and tear the plaster loose on the catheter and drip three times each. Wailed PLEASE HELP ME's to all and sundry (me that is, not Sam) and APF has just been to check on Conqueror Smurf and agreed that the catheter can be removed, which removal Sam performed himself while the sister was still taking the tape off! Sam's feeds have been increased as his reflux seems to be keeping itself in check so the drip will probably come out as well. Nothing symbolises healing like the removal of tubes!!
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)
Nicky - sending you HUGS and to Smurf who is being so brave. May each day get a little easier. Shout if you need ANYTHING!
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