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)

Thursday, September 1, 2011

Tuesday's post........now Wednesday's post......Oh please let's manage Thursday

You know what they say, third time lucky - so here's hoping my third attempt at publishing this post actually makes it. On Tuesday I downloaded the pics and started adding my comments but our little smurf, even more niggly than usual thanks to the onset of something viral or pneumonial...or both....was not having any of it. Tried again on Wednesday morning, no luck. Decided by Wednesday afternoon to at least just post the pics under the heading "Wordless Wednesday" but the second I settled down at the desk, two desperately-pleading blue eyes planted themselves at my feet, completely irresistable of course. So I picked our little man up and sat him on my lap, thinking I could surely manage to open the blog, go to edit posts and press "publish post", right? Wrong (again)! Ten little fingers reached instantly for the keyboard, so I pushed it as far away as what my short arms would allow only to find two little hands trying mightily to remove dad's speakers from the hard drive. Aborted Project Posting-with-Smurf-on-lap!

So I am determined to post something today so if I find myself having to stop mid-sentence, please understand :) 

We have regressed to where we were several months ago with trying to get Sam to sleep, now both during the day and the evenings. Walking/shushing him only lasts as long as he's in my arms, the second I lay him down he's instantly awake. This morning was no different, walked up and down with him for over 20 mins, laid him down and there it was. So, after an exhausting couple of weeks now, this morning I decided just to leave him in his cot to sob a little before picking him up. It's not that easy a task because of the ever-present threat of him v-wording if he cries too much and also because his wheezing and coughing does have me a little worried. Nevertheless, I settled him down, covered him with his blanket again (which he promptly kicked off) and left the room. Twenty-five minutes later, after much protesting, kicking and crying, he fell asleep and I thought WOO HOO! And now, sixteen minutes after THAT (in other words - as I sit here typing this), I can hear him moaning in his cot. Was it worth it? Absolutely NOT! My goodness....what am I going to do :(

Well up until Sam's getting sick a couple of days ago, he was doing heaps better with regards to recovering from his surgery and (as seen in the pics below) was even settling down into his usual playful and joyful self, so much so that Chris and I have been contemplating a little three-day trip next week. Meg is scheduled to go on a her first ever school camp on Wednesday so we thought, just in case, we would book into a nearby resort and enjoy the, hopefully, mid-week peacefulness there while ensuring we are closeby to Meg should she not last the entire three days away. However, with Sam being sick now we will more than likely have to cancel our plans as being in and out of the warmwater pools will probably just leave us spending three days in hospital as well. It was kinda exciting entertaining the thought of taking a break :)

In closing, some comment-less pics, whilst I go attend to Wide-Awake Smurf...
*sigh* 












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1 comment:

  1. CindySeptember 2, 2011 at 4:25 AM

    That's so hard, Nicky, trying to judge how long you can let him cry it out without him v-wording. I so feel for you...it's hard to walk the balance of teaching him independence without having to do more laundry every morning.

    Hugs,
    Cindy

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