SAM...MORE THAN A CONQUEROR: UNDERSTANDING SUFFERING.....FROM A CHILD'S POINT OF VIEW

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)

Sunday, September 19, 2010

UNDERSTANDING SUFFERING.....FROM A CHILD'S POINT OF VIEW

On Thursday I was told a story by a beautiful young woman who, up until then, I was casually acquainted with but who I now call friend. M opened up her heart to me and told me about the precious baby girl she lost as a result of Trisomy 13/Patau Syndrome. I knew very little, if anything, about these three devastating disorders/syndromes (Trisomy 13, 15 and 18) and did not even know M during this unbelievably sad time, but her pain still seems so fresh and raw. She is such an incredibly brave Mommy, finding the strength to carry on taking care of her two older children who desperately require her love and care. M's story though has a lovely ending, in the eyes of a precious little boy called Rian who is just weeks younger than our Smurf. On Friday I heard from a dear friend and endless source of support that her beautiful family is, at this very moment, treading frantically in a pool of unknown as they wait, with unfaultering faith and trust, to find out whether their little angel is going to be okay. This evening, while chatting to Meg, I opened up Sam's blog to type a post (the details of which I can truthfully not remember) and one of the first post's I saw on the right-hand side was from Jessica's blog about an amazing little girl called Mallorie who only yesterday succumbed to pneumonia, after an extremely courageous and seemingly endless battle with her health. Mallorie had also been diagnosed with the very disorder I had only three days ago learnt about (http://www.malmalrose.blogspot.com). Of course, Meghan aka "Eagle-Eye" caught the very first line of the blog instantly and immediately wanted to know if Mallorie had RTS. She then commented that Sam has also had pneumonia and, being the ever-anxious little girl that some of you know, you could see that little mind of hers kick into "worry mode" as it calculated that pneumonia + child = death! I carefully explained to her that firstly most children that get pneumonia recover extremely well but that sometimes, like with "special needs" children or children with cancer, AIDS, etc, their bodies have had to endure so many illnesses and conditions that their immune systems are just too weak to help heal their bodies. She still looked panic-stricken so then told her that little Mallorie did not have RTS...and that seemed to reassure her, whether rightfully so or not. Her next inevitable question was (as she has asked me this before) "Why do children get RTS and cancer and other sicknesses?" I have obviously not completely satisfied her mind with my previous answers, but its a remarkably difficult concept to explain to a child. I ran through pretty much the same explanation I gave her the last time, which was that God in no way creates children with special needs/cancer/illness, etc but that, we believe, the Devil will try anything to turn as many people away from God as he can, by doing whatever he can, and that sometimes God allows these things to happen so that we can turn to Him and pray more and become closer to Him. Also, sometimes, not only do we become closer to God, but we learn how to comfort others and help others who are going through the same thing as us. But, alas, even before I finished, I could see the same old expression that said that that just isn't a good enough reason in her mind. So, if anyone out there has any suggestions/advice on how they have explained this to their children, I would be ever so grateful. I don't want her to start losing her fresh, untainted adoration for her God and so, eagerly look for the right words to answer her question. The question of why God allows suffering is surely one of the most asked questions in the Christian community...I know I've asked it a good two or three (million) times! Just this morning after church ("church" still meaning me and Sam patrolling the foyer throughout the duration of the service) I said to someone that I honestly don't know how those who have no faith to fall back on, regardless of how fragile it might be, endure their own challenges and tribulations. And, speaking from personal experience, I have tried "going it alone" and it is simply impossible. Make no mistake, having at least a smidge of faith and trust in Him, certainly does not make one's pain or hardships any less formidable...it does, however, prevent it from consuming you as there is an unexplainable and, often, unexpected strength that helps you endure your trials.