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)

Friday, July 29, 2011

Surrendering normal and finding celebration....

Somewhere, amidst the now daily chaos that is trying to keep an extremely close eye on an ever increasingly mobile smurf while scheduling and confirming details for his upcoming surgery (Oh My! That reminds me - I haven't forwarded the authorisation numbers through yet!) and not forgetting the "normal" mundane tasks of housekeeping and taking care of kids, I vaguely recall a different time...what seems like just a distant memory now...of a friend, confidante, lifter-of-my-spirits. I can't always conjure up her image in my mind - it's just been far too long, but I'll never forget the joy of our times together. While rushing to catch a falling-off-the-couch smurf this morning, something caught the corner of my eye. My heart fluttered...could it be? My heart willed me - go ahead, look. It has to be her. My heart cautioned - but what if it isn't? Why put yourself through the disappointment?

My heart always overpowers my mind - and so I turned...the overwhelming emotion of laying my eyes on her created a lump in my throat as I stumbled over words, trying to utter her name as she stood there in all her glory -


BLOG POST CREATOR!

Or BPC as I lovingly refer to her. And what do you know - there on her screen, in equal radiance and beauty, was a picture of the lovely little being solely (well, almost) responsible for the lack of blog posting. Awwwhhhhh...but can you blame me? Isn't he just the most adorable little treasure? (Okay, so I am just a little biased...but indulge me, okay?)

Our little smurf is all over the place, crawling at the speed of lightening (which speed is daily honed by his unrelentless desire to catch the kitties) and THIS statement is made with little bias as, while standing in the paed's office last week, Sam covered the entire distance of the waiting room floor in a split second to get to the little girl standing on the other side, making her mom exclaim how fast he crawls. He has a habit of pulling his peers down to the floor, not out of nastiness but purely to bring to them down to his level. So when he saw this blonde hair, blue-eyed little beauty standing with her blankie on the far side of the room his little hands and knees motored across that floor with amusing "shimmying" and speed. Not only has he mastered crawling, he is now pulling himself up on everything and then quite confidently pulls himself along the length of whatever he's holding onto. As if all of that is not enough, Sam now crawls up the stairs and then tries to turn himself around to crawl back down again - this he has not yet mastered though and usually starts whimpering when he realises he's stuck.

The smurfskiing is going well and Sam is experimenting with all different kinds of equipment, from stacking cups to his Barney bus! His view is - if I can fit it under my hand, I can smurfskii with it! I bet if he could keep either one of the kitties still for half a second he'd try using them as a smurfskii-board. I am sure we'll have more pics on this topic soon....




Sam clapping for himself when I exclaimed how well he was balancing. He never misses an opportunity to applaude his own achievements, just in case we're a little too slow.

Almost daily I spend a good few instances in awe at just how intelligent this little boy is. Do you know that if you surrender all pre-conceived notions of "normal", you can find something to celebrate and appreciate in almost every aspect of your life? A perfect example - for months now I have been posting about (and, honestly) sometimes complaining about the fact that Sam is quite severely attached to me...which means he struggles to take a bottle or food from anyone else and plain and simply bursts into tears if either I leave the room or if, say, my Dad is holding him and leaves the room with Sam. Two of the more challenging issues are that he cannot be consoled by anyone else if he is upset and, perhaps the most trying, cannot be put to sleep by anyone else.Somehow that night that I stayed in hospital a couple of weeks ago, Sam knew that I was not there - that he had to be okay with being taken care of by someone else. But since then, even if we try and "wean" him off me in the evening by me trying to "fade off into the background" about half an hour before his bedtime, so that Chris can get Sam off to sleep, he just somehow knows that I am there and will cry and, ultimately, v-word until I come and take-over.

What is there to celebrate in this? Well, up until a couple of days ago, I thought it more a task than anything else. And then, on the RTS listserv, started reading mails from several RTS moms about
the heartbreaking emotions they endure when their own little RTS sweeties either fail to or have taken considerably longer to "recognise" them as their mamma's. I started e-mailing the listserv to share how super attached Sam is and also how affectionate he can be (when he's not giving me attitude). I decided not to send my thoughts though because I can only imagine how I would feel if the tables were turned and it would probably break my heart just a little bit more. So instead, I will cherish and savour each moment that Sam protests against him and I being separated and thank the Lord for how truly blessed we are.

Kindly Note : The author hereof reserves the right to amend this post/statement at any time, without notice, should exhaustion and severe backpain begin to cloud her judgement. Thank you.

Talking about attitude - on Tuesday Sam, Chris and I were lying on the bed and Sam was trying to get Chris and I to knock on the headboard for him. It being the end of a rather long day with me trying to do a painkiller-free day since the op, I was not particularly up to lying and knocking on the headboard (horror of horrors!) so instead folded my arms underneath me so that Sam would hopefully stop trying to pull them over to knock. Sam stopped, looked at Chris (knocking frantically to keep Sam happy), looked at me...took a step forwarded and bashed me straight on the nose! My warped idea of how to find something to celebrate in this? That this little mite of a human being is prepared to stand up and fight for what he believes he truly deserves....which in this case was plain and simple obedience.Okay, it took a couple of tears (mine, not Sam's), some tissues to stop my bleeding nose and a couple of days to work through the whole process to get to this point, but at least I'm here :)

So, Sam's surgery is scheduled for 12 August at 8:00am...beginning first with his annual glaucoma examination, then the removing of his adenoids and lastly the process to rectify his undescended testes. It looks like we might get away with coming home the same day but will probably discuss this further closer to the time or, rather, on the day.

In closing : I captured THE most awesome video of Sam jamming to Bruno Mars, but with Sam's ever exploring fingers of anything remotely technical (cellphones, remotes, keyboards, etc) he has somehow deactived my phone's facility to download pics/video's to the pc. I am devastated - to the point that I am going to take my phone in to my service provider tomorrow to ask them how to remedy this, so here's hoping there'll be a post on Sam's blog tomorrow, headed : Sam Luvin' Bruno Mars
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1 comment:

  1. antheaAugust 1, 2011 at 9:41 AM

    Waiting patiently for Bruno (Sam) Mars.... you always make my week with your amazing sense of positivity and homour. Celebrate whatever little steps and milestones arrive and enjoy the blessings that Sam brings to everyone.

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