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, March 5, 2011

Make sure your recreations re-CREATE / Sam's first visit to the Beach!

My friend, SH, was recently chatting about the danger of allowing not only your physical being but also your spiritual, emotional and mental being to become weakened by whatever daily challenges we face...my "friend" being Selwyn Hughes and his "chatting" being one of his daily devotional Bible readings. As we all know, the more our defences/spirits weaken the more of an easy target we become to Satan. So he felt it was important to make sure that your recreations really do re-CREATE your spirit, your drive, your positivity, your faith, etc. Recreations which do little more than instil competitiveness, frustration, disappointment are really, at the very least, pointless if not just more detrimental.

So, as we've been riding a high wave of throwing up and sleepless nights again, we decided to do something plain and simply FUN and RELAXING this morning and just after Sam woke up and had his first bottle, we bundled him and Meg into the car (it was way too early for Luke to roll outa bed) along with some muffins, a spare bottle and some boiling water (thanks Cindy) and, of course, Sam's nappy bag and headed off to Blouberg Beach. We arrived just before 9am in order to avoid the inevitable crowds and heat and figured we'd just give it a half hour go to see how Sam did with this strange new surrounding. Just stepping out of the car was rejuvenating enough, especially when your social life revolves around therapy or doctors rooms and the school carpark. Well, our little smurf enjoyed it so much that we landed up staying just over an hour and the only reason why we eventually left was because a) I actually hadn't thought to pack in any toys for Sam (hey - not used to doing the "outing" thing with Sam...need some practice) and b) Chris had a haircut later in the morning.

It was so incredibly refreshing just having those short sixty minutes and an awesome change of scenery. So, we have already planned another trip to the beach in two weeks time...and this time I'll be way more prepared.


 Sam, quite willingly, eating a chocolate muffin for breakfast.

 Oral aversion? What oral aversion?

 We know that a lot of the RTS kiddies have problems with textures like sand and grass, etc but Sam had absolutely no problem having his feet in the sand and later even allowed me to pour some of it over his feet and legs.

 The water was F.R.E.E.Z.I.N.G and I barely managed a one second tipping in of my big toe before getting cramps but Meg and Chris were much braver...

 Although Meg was not brave enough to give up without a fight when Chris tried to throw her in!
Luckily he was just playing.

 But she chose to rather keep her distance just in case :)

 Table Mountain

 The  Seli1 which has been stranded just outside of Blouberg since 2009

 And then...my camera's batteries died so for the most important pics of Sam actually braving the cold water/sand I had to make use of my phone's camera.


And of course, no place/event goes without some hand clapping!

3 comments:

  1. What a great idea! It's so easy to forget to relax and take time out for JUST fun sometimes. Life can get way too hectic and a change of scenery like the one you just did is such a good idea. As you blogged about " just stepping out of the car being rejuvenating enough..." I as the reader, could smell the the beach.. I felt for that split second that I too had escaped... perhaps I too shall plan to rejuvenate...

    ReplyDelete
  2. I'm so glad you had a fun outing. It does refresh our spirits to do something new, especially something that we didn't think we could do without it being a burden. Get out! Wade in the ocean! Whoo hoo!

    ReplyDelete
  3. I am so homesick seeing Table Mountain and the sea some of the things I miss the most. Amy still asks to go to the beach every day something we did in Hout Bay even for just a short while most days. So good for Sam and I love the way he seems to be enjoying it so much. Makes for good sleeping too!!

    ReplyDelete