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)

Saturday, November 27, 2010

Blessings in disguise?

We've finalised a date for Sam's surgery and it's a little later in December than we were originally working fact, it's five days before Christmas...the 20th December. It's obviously not exactly something you look forward to doing over Christmas time, especially where there are other children in the family...but, for us at this specific time, it's the best we can do. Prof F has an incredibly busy schedule (ultimately a good sign - if it was him fitting into our schedule as opposed to the other way around, I would be a little worried) and from the week of 6 Dec is busy with brain tumour surgeries, etc so can either do Sam on the 3rd December, 20 December or anytime from the middle of January. Dec 3 would mean that we miss out on the Christmas Concert Meghan and Chrisna have been practising so hard for, as well as having to worry about getting Meghan to and from school, homework, etc. Mid-January is right at the beginning of the school year (17 January) which, apart from the task of settling Meghan into her new class, also means various parent/teacher meetings and other goings-on at the school. Chris has a couple of weeks of budget meetings in February which will make it tricky for him to take leave, ultimatey not the best scenario as I would prefer for him to be able to take leave to relieve me from the hospital and then Prof F is overseas in March again. So, remove the emotional and sentimental aspect for a while, 20 December is, logistically, the best option for our family.

I don't know about you, but over the past few years I have heard many many people complaining about how the true meaning of Christmas is becoming more and more distorted by commercialisation but still find it almost impossible not to get swept up in the festive whirlwind of presents that need to get bought and wrapped, trees which need to be assembled and decorated, roasts and trifles which need to be made...and, yes, eaten...and although we do make sure that the heart of the matter, being the birth of our Saviour, does not become totally insignificant to these festive activities, sometimes it is a real challenge to keep this our main focus as we become totally smitten in watching our children enjoy the whole Christmas package. Should there be the same amount of celebrating and cheerfulness if Christmas Eve/Day is not celebrated with a scrumptious dinner/lunch with our family, if there are few or possibly no exchanging of gifts followed by family photo's and children playing games outside? Of course there should be! WOULD there be? Honestly? I really don't know...I want to say that if Christmas lunch is a toasted sarmie from the hospital cafeteria or if gifts are exchanged around a hospital bed, that as long as we don't lose sight of that "true meaning" we should have just as wonderful a Christmas as we were originally planning but sometimes, no matter how hard we try, we just cannot get our heart and our mind on the same page. So what do we do? We try harder of course :) I think the part that worried me the most about Sam's surgery being on the 20th was telling Meghan because, without a doubt, she is the sibling that has sacrificed the most since Sam was born and although I can tell when she's feeling particularly neglected or even a little jealous of the attention Sam needs...she still loves him completely and unconditionally and worries incessantly about him. She often asks me what will happen to Sam if Chris and I die, what he's future is going to be like when he's "old" (to which I usually say that unfortunately we don't know how Sam will be in thirty years or so and she once replied "Oh No, I don't mean THAT old!!!" Hallo! Let's talk again in twenty-seven years about what's "old"). Which reminds me (I might have posted about this already - but just in case) a few days ago while trying to make head-or-tail of what was happening in Meghan's schoolbag-cum-dustbin-cum-lost book cemetary-cum-art collection-cum-cooldrink bottle bermuda triangle I found a Get Well card she made for Sam but obviously forgot to give to him (or probably just couldn't find it) where she wrote that she is sorry that he is "RTS" but that she loves him even though he is "RTS"!

Anyway, surprisingly, I have managed to sway off the topic which was that, although I was a little worried about telling Meg Sam's new surgery date, even though for the first few seconds she looked a little heart-broken, she quite quickly recovered and then you could see that little metaphorical light bulb flash and she asked "So when will we open our presents?" And I expected a different reaction because...?? Perhaps though this whole turn of events is a blessing in disguise...perhaps this year, both parent and child alike, will truly discover and experience this "true meaning of Christmas" which term, so effortlessly, gets exchanged in one conversation after another.

This morning, when we dropped the girls off at the church for concert practice, as always we were asked how Sam's doing and whether we have a finalised date for surgery now and I explained that it's all happening a little later than expected and explained why and one of the Sunday School teachers, Helga, said to me "You don't know yet why it has changed?" So, not sure if she'd previously heard me,I began explaining again about the surgeries Prof F is doing next week, but before I'd said two words she looked at me again and said "You don't know yet why it has changed."

It wasn't a question......

"Live for today, but hold your hands open to tomorrow. Anticipate the future and its changes with joy. There is a seed of God's love in every event, every unpleasant situation in which you may find yourself." :- Barbara Johnson

"When the heart weeps for what is lost, the spirit laughs for what it has found."
- Sufi Aphorism

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