Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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 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 26, 2010

Mountains to Molehills

I have not had the privilege of a complete Sunday church service for quite some time. For at least the past two months almost every service has been spent walking Sam up and down the foyer while trying to grasp snippets of sermon through the doors. So, this past Sunday, Chris offered to walk Sam outside while I got to listen to our Pastor - and it was the perfect Sunday to be present. The service was the second of a two-part sermon, largely about Psalm 34 ("I will extol the Lord at all times,...") and, as part of the service, our Pastor read an excerpt from the biography of James Hudson Taylor. Taylor writes while his young daughter, Grace, literally lay dying on a couch from meningitis just metres away from is the most heartbreaking and emotional writing, but Taylor remains at all times loyal and faithful to his Lord. Our minister struggled on several occasions to keep control of his own emotions which I found so amazing, that he allowed his own vulnerability to be seen by his congregation.

(James Hudson Taylor 1832 - 1905, was a British Protestant Christian who spent 51 years in China as a missionary. In his lifetime, he saw not only the passing of his daughter Grace but, from what I remember, at least two/three other children - including a son called Samuel - and then of his wife, Maria, whose death almost completely devastated him.)

Sam has been particularly fussy over the past few days...I first thought he might be getting ill again, but by the weekend noticed that in addition to the new tooth I saw cutting through last week he also has a set of molars cutting through as well (that's like ten teeth in four months - easy does it Sam). He is definitely a little mucousy though and his gag reflex seems to be back in full force, so when I fed him his lunch this afternoon he started coughing and after spluttering out several mouthfulls, next thing up came his previous bottle and all his food. Breathe. Breathe. Breathe again...wipe up vomit, change Sam, change me.....try again. Second attempt at lunch stayed down. Had another bottle and some tea later. Come supper time (where I pureed PUREED food just to make sure there were no gag-triggers)...and up came semi-digested milk, tea and freshly swallowed supper. Breathe. Breathe. Fight back tears. Breathe. Fight back tears. Wipe up vomit (this time with Chris's help). Change. Try again. Oh my gosh - isn't it funny how quickly we take progress and improvement for granted? Thankfully, before I could surrender myself to a full-blown sobbing, Sam (obviously in an attempt to redeem himself) started babbling in his heart-melting way and threw in a spectacular attemp at clapping his hands. As I trudged up the stairs to prepare Sam's bath, feeling all sorry for myself I tried some self-therapy....Really woman! Build a bridge! A couple of months ago it was more the daily norm for his milk and the tiny bit of solids he was eating then, to come up than stay in his tummy and after one day's vomiting you're moping around like it's the end of the world. Felt a little better, not much. (Note to self - fire therapist, she's just no darn good). Then, while the tsunami that is Sam, was having his bath (together with our bed, the floor, the curtains, the neighbour's three houses down) I thought about old Hudson Taylor and the divine strength of his faith and my mountain became a molehill.

Still my rattiness is not completely unjustified...I am hoping that Sam is not getting ill as it is Sam's RTS sister, Payton's first birthday party on Saturday morning and we have been looking forward to our three RTS angels (Sam, Payton & Mattie) all being together for the first time, for months, as well as finally meeting Mattie's baby brother, Nic, for the first time!

Sam had an appointment with the urologist Prof F referred us to on Wednesday, Dr J. He said the normal procedure to diagnose a neuropathic/genic bladder (where they insert a catheter into the bladder, inject a dye and then take several x-rays over a 45min period) is not always conclusive in such a small baby and, as the procedure is pretty uncomfortable and would require Sam to be put under anaesthetic, he was not certain if this is the route to go, although he does appreciate that Prof F needs a "benchmark" from which to monitor Sam's bladder after the tethered spinal cord surgery, in order to determine whether the bladder's condition is improving or deteriorating. So, as Prof F is currently overseas, Dr J has sent him an email to which we are hoping he will reply before Sam's next appointment with him on 22 November.

"All our difficulties are only platforms for the manifestations of His grace, power and love"
James Hudson Taylor

1 comment:

  1. Amen. We've been there too...drowning in vomit, reprieve that we take for granted, then another onslaught of vomit that is so depressing. It is so wonderful that this is not a regular part of Sam's life, and he will get back to his normal self soon. And it is soooo eye opening to see the life struggles of others and be encouraged by their faith. Have fun at your mini RTS get-together! Wish we could be there!