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)

Wednesday, January 19, 2011

Hey....where'd my hair go?


Well, I can tell you that it took a gruelling forty-five minutes to get that hair going ANYWHERE! As Sam does not do great with hair clippers, I have to cut his hair with a scissors....which works oh so well on a flapping, not-giving-up-on-jumping, little smurf. So, there is a reason why this pic is only of the front view as at the back there are still one....or two.....maybe three, patches of long hair. But at least the shaggy-dog look has been tackled once again so this should hold us for a while. I was so....SOOOOO...looking forward to Sam's first bath since his surgery, he absolutely loves his evening baths and I had some crazy idea that being able to throw this back into his evening routine, might bring about some improvements. So it was really quite disappointing when I put him into the bath and he clung terrified to my neck...for the entire bathtime....two night's in a row. From the third night on, he has managed to relax enough to be able to at least bang his little plastic boat against the side of the bath, but only as long as my hand stays resting on his back. We are not without any progress though, over the past two days Sam has taken considerable weight on his right leg again and even made an attempt at trying to co-ordinate some kind of walking, albeit still on his toes. Also, although there has been one or two bad nights with Sam still waking up at least once or twice after being put down, the fight to be put to sleep has definitely toned down a bit. Of the five steri-strips which were originally placed over Sam's cut, only two remain. The other three have come off on their own while in the bath so I have decided to allow the other two to come off in their own good time as well. The area is obviously still incredibly itchy but, thankfully, the majority of the cut is covered by Sam's diaper so it's only when changing or bathing him that that little thumb (with the awesome help of  that hyperextensible elbow - knew it would come in handy some day) manages within a split-second to sneak a scratch or two in.

There are so many therapies and doctor appointments I was meant to have confirmed by now, but this past week has been fairly chaotic with the beginning of the new school year on Monday for Meghan...who, on the second day already, was sent home with severe earache. The call couldn't have come at a more impossible time as I was at that very moment being shepherded haphazardly through a three-and-a-half hour registration process for Luke's college enrolment. Luckily Brampies was prepared to help out and fetched Meghan for me. After a doctor's appointment, it was confirmed that Meghan has quite a hectic outer ear infection.  The diagnosis came as no surprise to me, as I predicted on Saturday morning already we'd be heading this way after Meg complained of earache towards the end of last week (after sometimes spending hour-upon-hour in the swimming pool) but still insisted on attending a swimming party she'd been invited to. That must surely be some kind of record? Being absent after only one and half days into the school year? Anyway, it was hard to withhold sympathy after the pain left her in tears for many hours, even right through the night. Today alternated between periods of crying in pain as painmeds wore off and then the relief after been given another dose. I feel terrible that she has already missed over a day of school as, with her sometimes still-very-present insecurities regarding unfamiliar routines, etc. I think it would have been best for her to be a part of the class settling into their new classroom and getting to know their teacher...but what could I do? Send her to school bawling her eyes out and with a temp of 39ÂșC? I am hoping that after having her third dose of antibiotics this evening, there will be a huge improvement by tomorrow morning...enough for her to try and manage a day at school. Here's holding thumbs.......


An utterly miserable looking Meg :(

Little Smurf is still very keen on his "talking" (consisting of a charming combination of "oooooh's" and gag-inducing grunts). I took such an amazingly funny video of him having a conversation with Chris but couldn't find a way to reduce the size of the video enough to upload it - such a pity. So tried to capture what I could with normal photo's........



This talking is S.U.C.H. serious business mom...it takes every bit of effort my little smurf-self can muster!


Luke hopefully starts his foundation level college course on Monday, presuming I can manage to find him a lift to-and-from the campus within the next two days (Y.I.K.E.S.) and then our days should largely have returned to normal so I can get cracking on all Sam's pending appointments. It feels like everything is a little out-of-control at the moment so I cannot wait to regain some order of "normality" to our lives......WAAHAAA! Who am I kidding? The only thing normal in our lives anymore is the complete certainty that there is NO normal!

"Normal" is nothing more than a cycle on a washing machine!
Whoopi Goldberg



1 comment:

  1. OH LOVE THE NEW HAIR STYLE!!! Thrilled about the weight-bearing on foot. Thrilled about the talking. HUGS

    ReplyDelete