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)

Saturday, February 1, 2014

Daniel and Friends Fund

A friend and I were chatting recently about the almost instant camaraderie when parents of differently-abled children meet for the first time.  Sometimes it's almost as if there's a sixth sense present which tells you the other person has insight into your journey before you've even exchanged stories...it's the sensitive way in which they enquire, it's the "knowing" way in which they listen, it's the empathetic yet free-from-pity way in which they offer support. It can be a technician during a routine mammogram, an occupational therapist whose compassion is channelled from somewhere deeper than just her patients, a friendly fireman delighting a homeschooling group at the local fire department.
 
Nobody knows your fears more personally, shares your joy at small achievements more fervently and understands your disquiet about the future quite like someone who too has felt those very emotions. Having the support of your family and friends is vital when navigating the less-travelled path...but having the support of fellow travellers can be nothing short of a lifeline. And a passionate and very determined trio of moms has taken this sentiment just that little bit further and formed an organisation which focuses specifically on providing this very support. They, together with their children's paediatrician, are the founders of the
 
DANIEL AND FRIENDS FUND
 
Daniel, who would have celebrated his 4th birthday today, lost his battle with Leigh Syndrome on the 23rd of August 2013. Exactly a week before that Daniel's little friend, Mariele, passed away due to complications related to Aicardi-Goutieres Syndrome, which Mariele's younger sister Liza also suffers from. (I have mentioned Liza before, perhaps not by name, as she is the little sweetheart who is solely responsible for every ounce of Sam's attention flying out the nearest window when her and mom, Kate, arrive for their OT session straight after ours). Daniel and Mariele's moms, dedicated to keeping their childrens' spirits alive by using their passing as the driving force behind their passion to help other families with differently-abled children, have joined forces with the mom of Johan and Sanel, both diagnosed with Metabolic Syndrome CDG1c, to be able to offer not only financial assistance when needed, but also assistance in the way of emotional support, training and education  related to caring for the child, raising awareness by means of community and educational programs and mass media campaigns...the first of which began with the very successful (and emotional too I might add, even for those who never had the delight of personally knowing Daniel and Mariele) launch of the Daniel and Friends Fund last Thursday evening.  

 
A brochure offered at the launch, together with business cards and a complimentary chocolate, all detailing the professionalism with which the Fund is being approached.
 
HOW CAN YOU HELP?
 
The monthly costs involved when caring for a child/children with different needs can range anything from R5,000 to R35,000 so it goes without saying that monetary contributions are much needed.  But for those who are not in a position to assist in this way, the Fund gladly welcomes donations in the way of no-longer-needed equipment/accessories like prams, carseats, feeding chairs, rocking chairs, apnoea monitors, nebulisers, etc; daily care supplies like nappies, wipes, barrier creams; clothes; volunteers willing to be trained as carers, etc.
 
But right this moment, the most effective way you could help would simply be to click on the link below and assist in raising awareness by Liking the Daniel and Friends FB page and, of course, share...share...share!!!
  
 
 
There's the well-known saying :
 
"Some people wait for the storm to pass. Others learn to dance in the rain"
 
Well, boy, can these Mama's dance!
 
 

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