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...
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, October 12, 2009

HOPE

For a prisoner on death row, a pardon offers hope of freedom. For the spiritual prisoner on death row because of the consequences of sin, God offers ultimate hope by forgiving our sins so that we can be with him in Heaven forever.

When life seems impossible, God brings eternal hope. Hope is essential to our perseverance, our getting through the tough times. Without hope we give up. Hope requires one thing though – a trust in the One who brings real hope.

The Lord is my inheritance; therefore I will hope in Him! Lamentations 3:24


THE VOMIT MONSTER COMETH

After a weekend filled with Sam’s worsening reflux we have decided, in keeping with Chris’ love for rugby, to rename him Sam “Puke Watson” de Beer….with quite appropriate timing as we have tentatively booked his Baptism with our Pastor for 25th October (not the vomitting of course, the re-naming...LOL). Seriously, we are exhausted…most hour long (and sometimes even longer) feeds of just 80 mls inevitably end with the entire feed being evenly distributed all over Samuel…from mouth to broad little toe..and even managing a serving in his nappy. So I have cancelled physio for today, for both mine and Cathy’s sake, and we are back to our two/two-and-a-half hour feeds until something gives. I am hoping with all my might that Sam’s complete regression where his feeding is concerned is simply a combination of the ear infection and havoc the antibiotic is wreaking on his little system.

Even more seriously, one of Sam’s best little friends, Jodie, is gravely ill in hospital with pneumonia, which she has been battling with for weeks already so we are praying for her and hoping that she makes a complete and speedy recovery so that she can go home soon. Jodie’s mommy and I have leaned immensely on each other over the past few months (although we are in two completely different cities), as we each learn to deal with our fairly recently diagnosed RTS angels and both now know the very true meaning of the saying “live one day at a time”. It has been such a blessing to have someone to share all our worries, frustrations, fears and…(although scarce at this stage)….joys with, and who is at the exact same place that we are at the moment, as we learn to say “so long” to our “normal” world for a while and start our journey into RTS-land. And still, even though some days it’s hard to remember this – there are just so many babies and children out there whose diagnosis’ and futures are so much more frightening and challenging than what we are facing and every day we have to remind ourselves that we are truly blessed!

2 comments:

  1. Amen!

    Have you tried thickening his feeds with 15 ml of baby cereal? This made a HUGE difference with Natalie's reflux.

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  2. Hi Cindy - he's actually on an anti-reflux formula which is super thick so he shouldn't actually be refluxing so bad. But we started him on an additional meds last Thursday, which is making a HUGE difference and he has only vomitted once since then..which is AWESOME!

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