….that’s what it feels like Sam and I have been doing for the last two weeks….standing, suspended in mid-air, surrounded by a glass bubble which is like one huge, circular tv upon which we watch the world carry on with all its normal daily happenings.
Samuel is not doing great at the moment – his daily sleeping is virtually non-existent and his nightime sleeping is filled with constant “snorking” and sudden gasps for air every time his tiny little airways become obstructed, which means continuously interrupted sleep. So, as Monday’s appointment with the ENT looms, it looks like we are with almost certainty heading for an operation. The thought of his tiny little 3.5 kg body being put under anaesthetic terrifies me, nevermind the RTS-related complications with anaesthetic, we have to believe that this will be the best for our little Sam and so will have to trust in God to keep him safe should we need to go this route.
On a positive note – Sam’s neuro therapy on Monday went great, without Meghan’s rattle-shaking assistance! By ‘great” I mean that the first fifteen minutes was scream-free, which is a major step for us. Sam’s head control does seem to have improved once again, after taking a bit of a dip, and he managed to push himself up completely on his two tiny little matchstick arms, when placed on his tummy (yip – which he still loathes….his arms that is, not his matchstick arms….LOL).
So, we wait in nervous anticipation for the outcome of both the ENT and paed’s appointments on Monday.
“Jesus came to give us abundant life, but not a trouble-free life. Part of the abundance He offers those who belong to Him is the power of his Spirit to overcome what others cannot. As believers, we have the power of the Holy Spirit to help us deal with circumstances differently than non-believers do.”
Joyce Meyer
“…In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33
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)
Hang on friend! Time will make this journey easier!! Thinking of you.
ReplyDeleteI am thinking of you as well. I hope Monday's appointments give you some answers. Good luck..
ReplyDeleteGood luck in the appointment hope it all turns out the way you hope for and i will be prying for you all!
ReplyDeleteI'm in your bubble with you, in spirit. Nathan gasped for air at night as well. Once we had his tonsils out, it greatly improved. He no longer has outward signs of apnea.
ReplyDeletePeace be with you during this difficult time.
Your little guy is just gorgeous!
thinking of you and christiaan all the time,but i love showing sam's pictures for my friends...he is just the most cutest baby
ReplyDelete