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)

Monday, January 2, 2012

2011 has left the building....

...and I'd not be entirely honest if I said I was sad to see the back of it. But, nevertheless, 2011 did see Sam learn to crawl, make at least something remotely resembling an attempt at signing and of course there were the many blessings we received recently which blessings kept on growing when we received yet another gift from Lancewood cheese on the 22nd of a huge cheese hamper complete with daunting cheese-cutting set and a lovely, squidgey teddy bear for Sam. It was precious finally meeting John and his colleague, Sarah, in person both of whom are filled with caring and compassion for others...you can just see FEEL it.

We had, as usual, a fairly quiet festive season with an early Christmas Eve visit to Sam's Granny and Great-Aunty Al and then a small, but enjoyable gathering for Christmas Day lunch with Aunty Cammy and Uncle D and the rest of us here in Smurfville. A few days before Christmas I was still a bit sceptical about whether Sam was actually going to avoid a hospital stay on Christmas Day as, as usual, it has taken him quite some time to get over the last viral infection and croup. Thankfully there was no hospital stay on the cards although Chris did land up doing most of the Christmas shopping on his own (not sure he saw this as a negative though as he does so love shopping - seriously!).

New Year's Eve was remarkably uneventful, with the exception of Sam eating about five mouthfuls of un-pureed "normal" macaroni and cheese with only a couple of gags, but still managing to swallow. Just before Sam's last surgery, he had started tolerating more textures so it was good to see, albeit tiny, a glimpse that perhaps it might be something we can start working towards again. Although, having said that, the fact that we are only 19 days away from Sam's next surgery - without him having found his way back to his "good place" yet from the previous one - I am not so sure that any kind of progress is something we should anticipate for now. Sam's sensory issues (or rather "fears" which seems much more accurate) seem to fluctuate erratically from day-to-day. For about 3 days last week I could not get him to sit in his high chair, the second I started moving towards the chair at mealtimes he would clench his little hands to his chest in his usual panic-stricken pose and that was about as far as we got. And then, just as suddenly and un-explained as this new fear appeared, so it vanished and we are back to doing mealtimes in the feeding chair. Bathing, getting into and out of the car and putting Sam into a crawling or sitting position on the floor remain still extremely challenging. I have never looked more forward to a surgery than the upcoming one to remove Sam's right testicle, especially after Dr B shared my concerns that a great deal of Sam's sensory issues could be related to pain or discomfort in the area where the testicle is tethered to a blood vessel. There are so many unanswered question riding on the outcome of this surgery so I can only pray that, despite the initial pain and trauma, we will be well on the way to recovery, from a sensory point of view.

Floating restlessly at the back of my mind is the completely irrational and whacky notion that there is something going on with Sam's spinal cord. I think that perhaps the fear originated from Sam's first sensory lapse in January 2011 taking place after his spinal cord surgery but not in any way eased by the fact that, where as Sam's urinary flow was strong and "healthy" for quite some time, I have seen too many weak, dribble-like wee's over the past couple of weeks. We also went through a period shortly before the TSC surgery where Sam seemed almost unable to straighten his legs completely and when we walked with him, would move his legs in a strange puppet-like motion...and although not quite as severe, Sam seems to be doing this again. Granted, he is not doing much walking at all lately so this could probably be more related to stiff, un-exercised muscles. Again, logic tells me there is no way the TSC is playing a part in Sam's issues right now...but what is logic anyway? Nothing more than a skill one acquires through endless rounds of chess-playing and galaxy-searching. Mmmm....no, I think I'm getting confused with my Sims now.

And from one countdown to another...there are only 70 days left until the Argus Cycle Tour! How scary is that? Okay, perhaps not for you...but for me it's horrifying. After we first registered to ride I looked up a Fittrack program which helps you train for the 110km race in just twelve weeks. I thought, "Cool! Still like 5 months to go, so I'll go back to the program in a couple of months time!" Well, I finally registered this morning to begin the twelve-week training program, TODAY...being ten weeks away from the race. So, even though the program is called the Survival Plan (which means you're main aim is purely to just complete the 110km's in 7 hours)...I am not too sure I'll be doing much surviving on that day. I think I will be pretty gobsmacked if I actually manage to complete the race. Whose completely absurd idea was it in the first place to attempt this? Oh ja, it was mine! (grins sheepishly)

Sometime in the upcoming week, Sam is going to be slowly and gently intoduced to some riding-therapy. I am so excited (okay...and a little scared, for me that is). An ex-colleague and friend started an awesome mission a while ago, together with a friend, to rehabilitate and take care of a number of horses, who had previously suffered abuse, neglect, etc. and now Haven of Hope shares the therapeutic benefit of horses with several special needs children. Something wonderful to look forward to, I am sure.

In closing, three very brief pics from Christmas Day (my pc is on the blink and it took 45 minutes to download just these 3 pics...3 out of the 20-something pics I originally planned on posting).

 
Sam has really taken to tearing up pieces of paper...magazine...photo's, so we thought that this would be his first "real" Christmas gift-opening experience, but he was more interested in what the girls were doing.


Probably Sam's most stunning gift - a portable dvd player for the car - from his Oupa Joe. For those that don't know, Sam is so not a car-travelling person and even short, ten minute trips to and from the school or shop usually results in crying and whinging so here's hoping this pressie is going to lighten the travelling load up a bit!


Oupa Joe's pressie for Megs was a beanbag chair, which she has been wanting forever, but which Sam and Brampies seem to have taken over (although Sam does seem far more comfy than his Bramps).

Every now and again, I take a quick peak at my previous journals just to kind of "compare" where I was emotionally and spiritually at that time, compared to the present. I think I've mentioned this before, but in case not - I had a "feeling" almost right from the beginning of my pregnancy that this baby was different...different to Meghan, to Luke...to every child we know. I confessed many times to God that I felt that I was being greedy by wanting a third, healthy and "normal" child but begged him nevertheless to look upon my pleas with favour. This morning I looked at what I had written on 1 January 2009 :

"In this world you will have trouble, but take heart! I have overcome the world!" John 16:33

So strange that I read this verse today. It was in a Karen Kingsbury book that I read yesterday."

It is so true...I think about what worries I have at the moment - the health and development of the baby growing in me, the health and wellbeing of my children. And yet the Lord has never forsaken me, so why do I worry so?

Then I watch programmes about small babies of just 9 months with cancer and braving chemotherapy and surgeries, Lord, and then I am aware of how extremely blessed I am and how you have always worked in our lives and I am humbled, Lord. I thank you...for every blessing and miracle I have in my life. I have to learn to pray as though I believe I will receive. I pray Lord, that you will bless our baby. That he/she will develop as perfectly as what Meghan and Luke did, with your Grace Lord and by Your hands."

And, as I've taken to doing, I close the journal, reprimanding myself for taking the silly thing out in the first place because all I walk away with is the fear that I did not pray as though I believed I would receive....or believe I will.

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