SAM...MORE THAN A CONQUEROR: Five things a special needs mom won't tell you

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, July 24, 2014

Five things a special needs mom won't tell you

I saw this link flying by my FB newsfeed a coupla days ago Five Things A Special Needs Mom Won't Tell You and thought Oh no! Not another thousand page handbook on how to 'handle' the parent of a child with different abilities...you know, like don't blink when engaging in conversation because it could be misconstrued as blinding pity for the mother and/or child...don't lick your lips when talking as it's a derogatory action implying you think children with different abilities are lesser human beings...and all those other not-so-helpful articles which prevent, through creating a distorted idea that engaging in any interaction with the parent/s of a kiddo with DA's is bound to be super high maintenance, the one common desire we all ache for...to just be treated like N.O.R.M.A.L.

Bleh. Normal. But there I said it.

I'm still sort of contemplating the term 'special needs mom'. A couple of years ago I never would've considered myself one of the more politically correct types on this journey...hearing people use the r-word sure irked me, but not enough that I would grab the nearest piece of cardboard and go start a protest. Now? I really could kinda see myself doing just that. In all fairness, I have used the term special needs mom/parent myself but mostly because it's probably the most 'recognised' term socially. I've experienced a few 'huh?' moments when referring to Sam as differently-abled as opposed to disabled. You can't land smack bang in the middle of England and instantly expect everyone there to communicate fluently in Afrikaans without having had any prior exposure to it, right? But a little enlightenment here and there will soon bring us all onto the same page.

So...special needs mom, hey?...certainly there are a few needs I have which might not fit 100% into the usual 'needs' box...being able to take my morning shower in a closed shower (especially now in winter...bbbrrrrrr) without rushing to beat my allocated three repeats of the balloon song (all the while keeping an eye on Sam) before he gets agitated...the need to not have to carry empty margarine/yoghurt tubs around with me...the need to successfully find accessories and equipment which can still accommodate a five year old who has not yet mastered certain skills generally acquired much younger (like potty training)...but I am not sure these needs could be considered special.

Could it be that the 'special needs' refers to the child? Hmmmm. An interesting concept and really quite possible. But still, does Sam have special needs? Or does he have the same needs as Meghan but just requires more thereof...more patience...more guidance...more care with his health...more creativity with his learning. Special implies extraordinary...being bathed in honey...carried around in style like an Egyption emperor...fed chocolate truffles at hourly intervals...all of which I can see Sam tolerating quite well. But if not special then what - Five Things More Needs Moms Won't Tell You? Doesn't quite have the same effect, does it?

I suspect a little further contemplation is required.

And what, you might ask, does any of this random gabbering have to do with the article. Absolutely nothing. It's not a bad article, go ahead and give it a read. The End xxx