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)

Tuesday, October 4, 2011

Mom-losing-it...again.


I am feeling ever-so-slightly overwhelmed with all Sam's doctor and therapy appointments at the moment. Was sooooo looking forward to a "quiet" week what with the short school break but before we knew it, every day was filled with one or the other intervention by the end of last week already, with the exception of today when we got to enjoy a totally unmedically-related breakfast with Aunty M and the boys! (Dankie julle xxx). We did also manage to slip away to Stilbaai for the weekend to celebrate Ouma's birthday with her and, even though the trip started off a bit shakily when part of my tooth (for which I am currently undergoing root canal ) went M.I.A. after I bit into a cheese puff (yes...a cheese puff) only an hour into our journey. Still, the remainder of the weekend went well with Sam being not too whingey on the ride there and, other than one throw-up incident on Saturday night, us being able to enjoy some quality time with family.

Sam had his very first appointment and assessment with his new NDT speechie on Friday morning. We are going to be using the Prompt speech technique with Sam initially which, although it seems a little intrusive for Sam's liking at the moment, looks really promising. Sam's OT, Pippa, has offered to do a short 15min session with Sam before his speech appointments to help desensitise him, which I am going to mention to his ST on Friday. Yes, I've said it a million times...and, please Lord, let me say it a million more....having therapists/doctors who go over and beyond their professional requirements is key to both your SN child's and your own confidence and wellbeing. Pippa and I were discussing the need for Sam to return to PT as well (which I've neglected recently because I felt his sensory defensiveness and desperate need for communication are currently far more pressing) as muscle tone, imbalance, etc can also play a part in speech difficulties. It was just one of "those" moments when all of a sudden, in a split second, everything just seemed too much. In my mind I had just seemed to get on top of Sam's schedule and needs. To top it off, bouncing around in the back of my mind constantly is the fact that Sam's orthopaed's (the "other" orthopaed - legs, hips, feet, neck, etc) assistant phoned on Thursday morning and asked me to please bring Sam in this coming Thursday. Normally we only see him every six months, with July having been our most recent appointment, and neither he nor many of Sam's other doctors very regularly phone US to schedule appointments. So when Pippa mentioned the PT, for a moment I felt a little fragile and, if the truth be known, there might have been an ever so-slight lip quiver and stray tear forcing its way out (much to Meghan's absolute horror). Once my flash of weakness and uncertainty had disappeared, we discussed the possibility of scheduling a team meeting with all of Sam's therapists and specialists, in order to make sure no areas are being overlapped nor, more importantly, neglected. I am not sure about the practicality of such a meeting with everyone's hectic schedules, but certainly do see a need for such a meeting so will mention the possibility to the parties concerned and see what the reactions are.

Tomorrow we are off to the hand OT to have a look at Sam's splint. The nighttime wearing of the splint has not been going well, with the one night Sam seemed to be tolerating it relatively comfortably being the night that he threw up in Stilbaai...and all over the splint. I am a little concerned that it is not a perfect fit as the little finger, being the most bent at this point, seems to evade the strapping completely.

On Thursday we have the requested appointment with Dr dT and then on Friday we are off, iPad in hand, to ST.

Alas, there is a light at the end of the tunnel...we have been invited to share in the celebrating of Matt and Nic Tooke's birthdays, this coming Saturday! It will be WONDERFUL to get to visit with our RTS family and catch-up in "real life" on all the events of the last few months.

2 comments:

  1. Aw chin up there girl just as well you can do all of this without having to still do the school run. Hope the week gets better for you.......love you lots Anthea and Mom

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  2. I'm with you...sometimes enough if enough! I'm praying for a respite from the doctor visits and time at home to enjoy your beautiful son.

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