Don't you love how "casual" dads are about taking care of the kids? How they shrug off our, seemingly, feigned exhaustion at the end of each day because when THEY take care of the kids it's just no fuss at all? Well of course it ain't, because if I could spend the entire day just playing with Sam without having to constantly ensure it's constructive, stimulated play, without having to tidy the house, make the beds, wash bottles, make up a day's formula, drop and fetch the other kids from school, do the washing, etc etc....I would also end each day with a smile and a load of energy to boot!
Still, it was a huge relief to hear that Monday night had gone smoothly with none of the usual hysteria that has become synonymous with Chris putting Sam to bed. Such a relief in fact that I decided to take full advantage of Chris' eagerness to see to Sam for the next couple of days and, in anticipation, had pvr'd a good couple of movies I'd been wanting to watch over the past month or twelve, as well as stocking up on some mags to keep me occupied in between my intended movie marathon while seeing my recovery out in bed! Aaaahhh....the joy of disillusionment. I got home from the hospital just past 11am on Tuesday, made my way to the bedroom...do not look in the kitchen...do not look in the bathroom...do not pass Begin, go straight to jail...uhm, I mean, bed! Do not be THAT Mom, I told myself. The kind of mom that is desperate for some rest but when eventually presented with the opportunity to take it (even if it takes a surgery to get to that point), lets guilt and imagined (hopefully) expectations get the better of her. You know the kind, I think they also go by the name of merry martyr...LOL! By Tuesday evening I had washed Sam's bottles, made his formula, put on the dirty laundry and fed Sam. Do I regret it? Of course! I have now either contracted flu or something similar as I have a sore throat, headache, temp, earache and possibly the most entertaining - continuous sneezing which in turn means continuous nosebleeds. Oh Joy! I am sure at least one full day's rest would have made the world of difference but as I, defeated, removed my pvr'd movies from the playlist and placed my unread mags on the bookshelf I had to admit that I have only myself to blame. Sigh! (Although having Papa Smurf demand that I stay in bed might have done the trick - just a thought for when my tonsils come, C).
As for the procedure itself - all went well or as well as it can go with 10cm+ plugs stuck in your nose and sinus cavity and equally long splints sewn into your nostrils. Thankfully the last sinus plug came out on Thursday and the splints on Monday evening. Those first few breaths of air were AMAZING! I even told Chris it felt like I was breathing in too much oxygen at a time for my lungs to cope with...LOL! (Of course that was over a week ago before I got sick) My post-op nose is still a bit tender and raw but the overall experience was not unpleasant, largely thanks to having a truly compassionate and caring ENT!
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)
Ever the little entertainer is our Sam.......I love the ingenuity with which he reaches his target. Hopefully by this time you and Sam are both recovered.....must say the nose job looks pretty good obviously thats is not how it feels.....love to all
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