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, August 31, 2009

Some pics in history




8 days old in dad's arms
17 days old and my eyes are open,
43 days old and sleeping on my stomach.


Friday, August 28, 2009

ASAP

Ever wonder about the abbreviation A.S.A.P.?

Generally we think of it in terms of even more hurry and stress in our lives. Maybe if we think of this abbreviation in a different manner, we will begin to find a new way to deal with those rough days along the way.

There's work to do, deadlines to meet;
You've got no time to spare,
But as you hurry and scurry-
ASAP= ALWAYS SAY A PRAYER

In the midst of family chaos,
"Quality time" is rare.
Do your best; let God do the rest-
ASAP=ALWAYS SAY A PRAYER.

It may seem like your worries
Are more than you can bear.
Slow down and take a breather-
ASAP=ALWAYS SAY A PRAYER

God knows how stressful life is;
He wants to ease our cares,
And He'll respond to all your needs
A.S.A.P.=ALWAYS SAY A PRAYER.

It's been a tough week for Sam...he's battling a terrible cold which he just can't seem to overcome and then on top of THAT, he's throat seemed to be bothering him like crazy the last couple of days so took him to the doc today..and he has severe thrush in the back of his throat. It seems like after every hurdle he makes it over, there's another two waiting in the wings and when he's managed to get through more challenging issues like breathing and feeding, it's awfully frustrating that things seemingly less "threatening" like a cold or thrush can cause him so much discomfort and misery. So, today we apply A.S.A.P. (thanks Diane) and say a prayer for Sam's health, as well as for his precious two friends...Matthew, who is also terribly ill with tonsillitis and Jodie, also battling a cold. We pray that these three little angels get well soon.

Wednesday, August 26, 2009

Conquests to date....

Sam has faced many challenges in the first twelve weeks of his life...and all of them are things we take for granted. First - he could not breathe on his own and required seven weeks on first an oscillator, then a cpap machine, then nasal cannular and finally normal oxygen. While he was struggling to learn to breathe we kept thinking and praying "Oh...if only he could learn to breathe". Then, Sam conquerored breathing - Yeah! But then Sam could not drink - he was breathing on his own but could not leave the hospital because he could not feed. So after two weeks (and nine weeks in NICU) Sam left the hospital with a feeding tube and we kept thinking and praying "Oh...if only he could learn to drink". Then, Sam conquerored drinking - Yeah! But, Sam was diagnosed with sever reflux and so was put on meds and an anti-reflux formula which made him severely constipated, so much so that he could not have a bowel movement without a suppository. And it was awful - it affected his drinking, after two days without a bowel movement he would cry bitterley with discomfort and we kept thinking and praying "Oh...if only he could poo" LOL And then, Sam conquerored pooing - Double Yeah!!! And then, we were told to expect delays with Sam's milestones because of a) his being so prem and b)the RTS. So when Sam smiled, really really smiled, it was Triple Yeah!!

Oh how we have learnt to appreciate each and every conquest and to be truly thankful....every time Sam finishes a bottle, every time he has a dirty nappy (yes, even when it's at 4am), every time he smiles is just as precious and glorious as the first time!

A sign?

On Friday, 1st May 2009, I picked up a book I had bought several weeks before by Dick Dobson. The very first story was about a thirteen year old boy, very healthy and athletic and excelling in tennis, who is diagnosed with muscular dystrophy. His dad is devastated, but the boy becomes the comforter and the one reassuring his dad with comments like "I don't need legs to serve God". The story goes on to explain how this particular boy's mission for God transcends any physical limitations he could face in a lifetime....the boy's name was Samuel. I went ice cold - were we been prepared for something?

One week later I was admitted, Samuel was still not growing and my doctor felt that keeping him in a womb that was not supplying enough oxygen and blood could be fatal. A week after that our Samuel was born.....and he was so beautiful and so small and so beautiful and so fragile...and oh, so very very beautiful. When we were told he has Rubinstein-Taybi Syndrome it was almost too difficult to believe because he was so perfect, except for his little unique thumbs and toes. But both Chris and I knew instantly that, no matter what the diagnosis, to us he is perfect and a gift from God. The Lord has entrusted him to us and I can only believe that our little Samuel has a precious purpose here on Earth and it is going to be an exciting and inspiring journey finding out bit by bit exactly what the Lord has planned for us. This tiny being is meant for something wonderful, something great and just as Hannah entrusted her Samuel to the Lord, so we place our Samuel tenderley in the Lord's hands.

Thursday, August 20, 2009

Some good news


Samuel went to the doctor today........


He has picked up 120g this week even with 2 days of not drinking well and it seems like his reflux is under control. When you are worried and stressed even the tiny snippets of good news, like this, is sometimes enough to give you renewed hope and strength to keep going. The picture of Sam was taken on the 18th August 2009 and, no, it's not Barney that's so big......

Wednesday, August 19, 2009

The journey started


It turned out that not a lot was conquered, so far, Samuel is growing, a bit at a time and trying very hard. We battled to get him to eat/dring properly, and it turned out the little man has severe reflux. Run out buy AR formula, and it works well for two weeks, until we change the formula to another brand, note to self.......... patience and more patience, dont make any sudden changes unless its life or death.


I will continue to do whatever I can to help Sam grow. I'm proud of him and even more proud of my wife Nicky, and Love her more than ever, and admire her for spending the bulk of her day, while I'm at work with Samuel.
From a Proud and Loving Father and Husband
Christiaan