Wow...not only has Christmas come and gone, but here we are half way through January already. It seems like ages since I updated Sam's blog....could be cuz it HAS been ages. So I have been kinda struggling to return to our normal daily goings-on but Meg and Luke started school again today so there's simply no excuse for me to still be lagging around in "holiday" mode. We had a wonderful Christmas and New Year's and even manage to extend our little trip to six days thanks to Sam being fairly relaxed and comfortable, even with two changes to his environment over such a short period of time (pics to follow tomorrow!) and his health has been holding up quite nicely so far (touch wood).
So I cannot say that I am sad to see the back of 2009 which has been quite a challenging year for us, but I CAN say that I am unexpectedly thankful for some of those challenges...although, perhaps that is not entirely correct, rather that I am thankful for what we learnt about ourselves and each other as a family as a result of facing those challenges. I am by no means making light of Sam's "condition" or being disillusioned by what lies ahead for all of us and the chances are that when he falls ill again all positive thoughts will instantly vapourise (of course) but still, it is almost impossible not feel a certain amount of joy, thankfulness and pride at where Sam is today compared to where he was eight months ago...even six months ago. Granted his achievements are not the typical achievements a mom gushes about, but that's largely what makes them so special....like the fact that when you hold your hand out to him, he automatically lifts his own hand and places it in yours...kinda like a Sam Hi-5....and how he "anticipates" certain actions like when we are playing with him and tickle him once or twice on his tummy or neck, the second you start moving closer to him he automatically anticipates the tickling and starts laughing out loud long before you are anywhere close to making contact yet. He has also started dribbling quite alot and has discovered that the dribble in addition to his "talking" makes for far more interesting "sounds" and tends to make his "bfbfbfbfbfbf" sounds now almost exclusively when he has just finished a bottle (what's better than dribble? Milk + dribble of course)! I am almost certain that Meghan and Luke did the same things but I was probably so focused on the more acknowledged milestones or achievements like sitting, holding a bottle, crawling, etc. that I never took the time to notice the more interesting ones...but thanks to our Sam I have been given the opportunity to pay attention a little more carefully.
So, here's hoping that 2010's blessings and opportunities and lessons will far outshine whatever inevitable challenges it will also surely bring....and I pray this for each and every one of family (whether it be biological family or RTS family) and all of our friends. The thought of the unknown is so completely daunting and something we instinctively fear...who wouldn't like to know what's going to happen in the next year? But sometimes the "known" can bring with it endless limitations which cripple our paths, for example we could sit back and say "Well there's no chance Sam is going to walk this year or even crawl so there's no point focusing on those areas"....the unknown forces us to push our expectations and aspirations to the limit, where we might rather say "we just don't know if he will sit or crawl or walk" so we spend some time testing those areas and, although we might not get to that specific point, we find out along the way that there's something else, completely unexpected, that he can do.....like rollerblading or doing backstroke in the swimming pool! JUST KIDDING! But you get where I am going with this...... :-) It's all just a little exciting, isn't it?
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
It IS exciting...and I'm so excited about your attitude. Mine was no where nearly as mature as yours when Natalie was Sam's age...so he's already ahead with great parents like you! And it is wonderful to celebrate the little milestones that others take for granted, because they are much more hard-fought than with typical kids. I pray you are able to find good therapy for Sam to help him on his path...or advice on activities to work with him on. There are books for helping developmentally delayed children, if insurance doesn't pay for therapy. Let me know if you need suggestions of books.
ReplyDeleteYou and Chris can be so proud of how far you have come. And of course Sam too - he looked so much more grown up when I saw him this week. So alert and interested in the world. Well done to both of you...and for allowing God to give you the strength to keep going, and to keep looking forward, and to keep loving your little Sam.
ReplyDeleteYou do have a wonderful perspective on things. Like Cindy said I don't think I was that grounded when Noah was so young. You are doing a great job with Sam.
ReplyDeleteNicky,
ReplyDeleteYou and Chris have such a positive outlook on things! I was no where near that when Nathan was Sam's age. It took me a long time to be okay with things and truthfully I'm just getting there now and my son is 3.5 yrs old. Blogging and connecting with my RTS family has helped me so much. I'm looking forward to getting to know Sam and your family better through your blog.