SAM...MORE THAN A CONQUEROR: Blessings in disguise?

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, November 27, 2010

Blessings in disguise?

We've finalised a date for Sam's surgery and it's a little later in December than we were originally working towards...in fact, it's five days before Christmas...the 20th December. It's obviously not exactly something you look forward to doing over Christmas time, especially where there are other children in the family...but, for us at this specific time, it's the best we can do. Prof F has an incredibly busy schedule (ultimately a good sign - if it was him fitting into our schedule as opposed to the other way around, I would be a little worried) and from the week of 6 Dec is busy with brain tumour surgeries, etc so can either do Sam on the 3rd December, 20 December or anytime from the middle of January. Dec 3 would mean that we miss out on the Christmas Concert Meghan and Chrisna have been practising so hard for, as well as having to worry about getting Meghan to and from school, homework, etc. Mid-January is right at the beginning of the school year (17 January) which, apart from the task of settling Meghan into her new class, also means various parent/teacher meetings and other goings-on at the school. Chris has a couple of weeks of budget meetings in February which will make it tricky for him to take leave, ultimatey not the best scenario as I would prefer for him to be able to take leave to relieve me from the hospital and then Prof F is overseas in March again. So, remove the emotional and sentimental aspect for a while, 20 December is, logistically, the best option for our family.

I don't know about you, but over the past few years I have heard many many people complaining about how the true meaning of Christmas is becoming more and more distorted by commercialisation but still find it almost impossible not to get swept up in the festive whirlwind of presents that need to get bought and wrapped, trees which need to be assembled and decorated, roasts and trifles which need to be made...and, yes, eaten...and although we do make sure that the heart of the matter, being the birth of our Saviour, does not become totally insignificant to these festive activities, sometimes it is a real challenge to keep this our main focus as we become totally smitten in watching our children enjoy the whole Christmas package. Should there be the same amount of celebrating and cheerfulness if Christmas Eve/Day is not celebrated with a scrumptious dinner/lunch with our family, if there are few or possibly no exchanging of gifts followed by family photo's and children playing games outside? Of course there should be! WOULD there be? Honestly? I really don't know...I want to say that if Christmas lunch is a toasted sarmie from the hospital cafeteria or if gifts are exchanged around a hospital bed, that as long as we don't lose sight of that "true meaning" we should have just as wonderful a Christmas as we were originally planning but sometimes, no matter how hard we try, we just cannot get our heart and our mind on the same page. So what do we do? We try harder of course :) I think the part that worried me the most about Sam's surgery being on the 20th was telling Meghan because, without a doubt, she is the sibling that has sacrificed the most since Sam was born and although I can tell when she's feeling particularly neglected or even a little jealous of the attention Sam needs...she still loves him completely and unconditionally and worries incessantly about him. She often asks me what will happen to Sam if Chris and I die, what he's future is going to be like when he's "old" (to which I usually say that unfortunately we don't know how Sam will be in thirty years or so and she once replied "Oh No, I don't mean THAT old!!!" Hallo! Let's talk again in twenty-seven years about what's "old"). Which reminds me (I might have posted about this already - but just in case) a few days ago while trying to make head-or-tail of what was happening in Meghan's schoolbag-cum-dustbin-cum-lost book cemetary-cum-art collection-cum-cooldrink bottle bermuda triangle I found a Get Well card she made for Sam but obviously forgot to give to him (or probably just couldn't find it) where she wrote that she is sorry that he is "RTS" but that she loves him even though he is "RTS"!

Anyway, surprisingly, I have managed to sway off the topic which was that, although I was a little worried about telling Meg Sam's new surgery date, even though for the first few seconds she looked a little heart-broken, she quite quickly recovered and then you could see that little metaphorical light bulb flash and she asked "So when will we open our presents?" And I expected a different reaction because...?? Perhaps though this whole turn of events is a blessing in disguise...perhaps this year, both parent and child alike, will truly discover and experience this "true meaning of Christmas" which term, so effortlessly, gets exchanged in one conversation after another.

This morning, when we dropped the girls off at the church for concert practice, as always we were asked how Sam's doing and whether we have a finalised date for surgery now and I explained that it's all happening a little later than expected and explained why and one of the Sunday School teachers, Helga, said to me "You don't know yet why it has changed?" So, not sure if she'd previously heard me,I began explaining again about the surgeries Prof F is doing next week, but before I'd said two words she looked at me again and said "You don't know yet why it has changed."

It wasn't a question......

"Live for today, but hold your hands open to tomorrow. Anticipate the future and its changes with joy. There is a seed of God's love in every event, every unpleasant situation in which you may find yourself." :- Barbara Johnson

"When the heart weeps for what is lost, the spirit laughs for what it has found."
- Sufi Aphorism