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, October 10, 2012

Sleep Wars Continue

The title really sort of wraps it all up, doesn't it? Of course after I jinxed the good night Sam had last Wednesday by blogging about it on Thursday, he's been stirring every evening round 12:30ish...sometimes thrashes around for a coupla minutes...sometimes for a coupla hours...and then falls asleep again after that, still with lots of jerky twitches.  Last night Sam woke the usual time, screamed as if he was being barbarically tortured for an hour or so and then drifted off again.  Perhaps its time to accept and come to terms with the reality that this is Sam's new sleep pattern and find a way to adapt to it.  Don't ask me how one possibly does that...any idea's?

Both occupational therapy yesterday and physiotherapy this morning were a treat though.  Yesterday Sam's OT was trying to encourage him to play with playdough which he kept refusing to touch, although he was quite happy watching her cut out the little burger-and-fries shapes. The little french fry cutter was adorable and of course both Christa and I kept remarking on the little "chips" she was making.  Sam looked at Christa, looked at the teeny playdough shapes, seemed to think "What? Chips? Why didn't you say so..." and promptly tried to put one in his mouth! After I've figured out how to adapt to the new sleep pattern, going to find me an edible playdough recipe...only way we'll get Sam to touch the stuff. 

Strangely enough Sam's been quite relaxed at touching new textures during his other therapies. He's a real character, isn't he? Is joyfully "verbal" and eager to show off his signing during physio and OT, but refuses to do either during speech therapy.  He'll happily mess with kiddies foam on the mirror at speech therapy or spend ages taking foam animals out of a container of water, placing on a mirror and removing again during physiotherapy but refuses any contact with textures during occupational therapy.  I sometimes think we completely underestimate that little mind.

Shopping trips have proven a little easier to manage lately...well up until yesterday that was.  When taking Sam for a walk, I'd started strapping the iPod to his pram with a little velcro speaker attached, which he seemed to love and was quite content to listen happily to He's Got The Whole World in His Hands over and and...and over (beats my squawky rendition which is all we had before).  So when needing to go to the shops last week I thought what the heck, let's give it a shot.  Other than getting a few odd stares at Sam's "dancing" (in other words, serious happy-flapping) it proved to be an awesome hit and we even managed an extremely painful (for us that is) two-hour long hunt through Canal Walk over the weekend.  But in Smurfville all good things come to an end...far too quickly. And yesterday the iPod decided to go on the blink. Disaster. Not only for the shopping benefits, but also because thats the only way we manage Sam through the streching part of his physiotherapy.  Luckily Heidi worked super-quick through Sam's stretching this morning and had finished just as he started seriously protesting.  So...after I've discovered awesomely successful ways of making Sam's new sleep pattern work for us and found a delicious and safe recipe for edible playdough...I am going to design a sensory friendly pram/buggey (with regards to colour, depth and position of the seat, height, etc) with built-in speakers around the frame where one can simply plug in your iPod.  Think it'll work?

But before I get started on the above, we are hopefully headed off for a weekend away to celebrate Sam's Ouma and Oupa's birthdays this coming Friday.  We seemed all good to go until last night when Meghan started coughing and Sam woke up sounding disappointingly croupy this morning.  Just four nights of germ-evasion...that's all we need. Headed off to the shops this afternoon, devastatingly iPod-less, to stock up on immune boosters and the likes.  Holding (angulated) thumbs x

1 comment:

  1. http://www.familycorner.com/family/kids/crafts/edible_play_dough.shtml

    Edible playdoh. I've never tried any of those, though.

    I'm so sorry that Sam is still having such a hard time with sleep. It's so hard watching them when they are so miserably tired. (((HUGS))) to all of you. Hang in there.

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