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, January 16, 2014

Change

Sam turns five this year. Yikes!
Meghan turns thirteen. Double Yikes!
Mom turns.....mmm, let's just not go there!  #fortyphobia

Since pretty much the beginning of Sam's sensory/anxiety issues I have found myself wanting to homeschool Sam. I take great delight in sharing that before the age of three Sam knew all his numbers 1-20, many shapes, letters a-f and more recently can recognise almost 30 different WORDS from his list of signs.  And these words have no pictures or icons, it is simply a list of 200 words from which he can select several simply by scrolling down the list. And it's not the easy words...it's words like caterpillar, swing, sleep, daddy, mommy, grampa! I love how much Sam absorbed whatever I was "teaching" him and how he thrives on a one-on-one setup.

Towards the end of last year I started having second thoughts. Watching Meg enjoy the excitement of the various yearend activities like concerts and grade results, etc. made me a little bit emotional about Sam not ever experiencing those same things.  Suddenly all thoughts of homeschooling had me envisioning a solitary smurf, humped over his i-Pad, robbed of social interaction and, seemingly, life. Accompanied by an equally solitary, hermit-like,  humped-over mother (hers age-related LOL). I thought about the extra, included therapies Sam would benefit from by attending a school for differently-abled children as well as the possibility of me returning to work to try and keep our heads above water financially. 

Also, and perhaps having had the most impact, I recalled someone making a comment on some or other medium implying that homeschooling was effectively saying that you do not believe your child has the potential to thrive.

Yip. Definitely what had me ever-so-slightly mortified.  Simply because I know Sam truly does have potential, huge unimaginable hoards of potential.  And it would be devastating to have him or anyone else believe otherwise. 

And then the holidays happened. Along with a level of anxiety and distress we have never seen before...and we've seen plenty of both. Apart from the change in routine that goes with no school or work (which I've mentioned before) there were other minor things just as baffling. Samuel stopped pulling himself up on the tv unit, which he used to do all the time especially when watching his favourite dvd's. He became impossible to transition from, say, the couch to the floor. He would just turn around and cling to whatever he could grab in absolute fear. Having him so fearful in his own home is saddening.

Remember the story about the time I hung curtains in our bedroom? Try this one on...

As our lounge is a little quaint, putting the Christmas tree up required the moving of some furniture. And by "some" I mean shifting one sofa a total of about 1.5 metres at a 90deg angle. When Grampa returned from a two week visit with his sister and noticed the change in Sam, he asked if it couldn't perhaps be the shifting of the sofa that was unsettling Sam so much. I said "Nah!"

Yesterday morning I moved the lounge back to it's original arrangement. Instant improvement in Sam's behaviour. The fear is not completely gone, but it is better.

The lil smurfy dude just doesn't do well with change. He doesn't do well with unfamiliar. I tried to introduce Sam into the Sunday School class last weekend.  With the classes not having begun yet, the class was very casual with the other kiddies just playing ball or building blocks...nothing particularly exciting. Of course I planned to stay with Sam all the time. Instantly he started gagging. I tried to distract him, which worked for a little while. More gagging. Twice I left the room to try calm him. But eventually it got too much for him and he started vomiting again.

So here's the thing...Sam in a mainstream school will.not.work. It is not a cop out. It is not a surrendering of his potential. It is not an over-emotional grumbling. It is what it is. REALITY. Putting Sam in a mainstream school now would not be for Sam's benefit. It would be for ours...for the sake of our pockets and for the sake of the "normal" expectations instilled in us for our children, for the sake of fitting in, for the sake of a hundred other things except for the sake of our uniquely designed Sam.

Now, the only doubts I have about homeschooling are really about myself. Having no teaching experience, will I be able to adequately educate Sam? I am blessed to have a good friend who is currently homeschooling both her sons and has introduced me to a homeschooling group. Her reassurances that homeschooling by no means deprives a child of social interaction have been validated almost immediately by an arranged group art class tomorrow morning at 10:30 which Sam and I will be attending (hopefully minus v-wording) and an outing for next Thursday to the Fire Department which couldn't come at a better time as Sam has suddenly developed a keen interest in fire engines.  I have every intention of persevering with the Sunday school class as well and can only pray that Sam eventually starts to feel comfortable there. Taking that Meghan took a total of two years and nine months before she enjoyed her first tear-free day in primary school, I am hoping that by the time Sam is 7 we might have a successfully attended Sunday school class!!!

I am excited about our homeschooling journey. I am excited about finding new and creative ways to teach Sam, knowing that I am playing an active role in helping him be all that he can be. I know in my heart it's the right decision for Sam :) What was that I mumbled recently about how changing the path you take doesn't necessarily mean changing the goal xxx

Progress is a nice word, but change is its motivator.
And change has it's enemies.
(Robert Kennedy)

1 comment:

  1. It was my turn to read to the end :) I'm not good with words but endeavour to bring a smile of encouragement ........ and a Hug and for certain a prayer Godspeed

    ReplyDelete