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)

Thursday, December 23, 2010

It's true....we're home!

Just forty-nine hours after Sam came out of theatre and we are home. Wow! No, really.....WOW! On Monday morning, when handing our Conqueror Smurf over to wonderful Dr Burke the tears I had constantly been fighting off for the previous few days (and not always successfully) got the better of me and, with Sam in a position to be spared my mini-meltdown, I let rip and bawled for a good few minutes...all the way down to the cafeteria for something to drink. As we were waiting to pay, Chris placed a faith token down on the counter (we'd purchased one for each of us a while ago, didn't think he still knew where his was)....



And, on the flipside....

Lord, help me to remember that nothing is going to happen today,
That you and I can't handle TOGETHER!

I was still a little too emotional to pay it much attention, gave Chris a smile, slipped it into my pocket and we walked back upstairs to monitor the theatre doors. Sitting there doing nothing was unbearable and it wasn't long before our anxiety reached epic proportions and I was pretty sure I was either having a heart attack or having the most unbelievable panic attack with chest pains, hyperventilating, nauseau and the works. How great that would be....Prof Fieggen comes walking out of theatre to tell us how amazing surgery went and here I am sprawled out on the floor like a crazy person. Life Vincent Pallotti Hospital was founded by St Vincent Pallotti and although his vision has been somewhat distorted by modernisation and Christian-based political intolerance, there is still an idiosyncratic spiritual essence present, heightened when we saw a nun or two walking through the passages. So I suggested we take a walk to the chapel in an attempt to calm and reassure ourselves and to further prevent our fear from allowing us to focus on what we know in our hearts, that God has carried Samuel through so many trials and challenges, from even before Samuel was presented to this world, and that He will continue to do so.

Still a little uncertain of what to expect when Sam came out of theatre and with very very many trips to the loo indicating that not all anxiety had completely vanished, I did feel heaps better and in more of a position to haul out every last bit of strength and faith I would need to be there for Sam. Chris still remained quite anxious and when we started approaching the two-and-a-half-hour mark in theatre, became quite distressed even though I reassured him that we'd rather have Prof Fieggen taking his time to ensure an excellent result. We will never forget though the feeling of overwhelming relief and pure joy of hearing Prof coming through the theatre doors to tell us that the surgery was a huge success. Minutes later Dr Burke came through to tell us that Sam was doing well and was completely calm and relaxed, other than occassionally wriggling his toes. He was fast asleep when they wheeled him out of theatre, none of the hysterical crying and thrashing about I'd feared. And he pretty much remained like this.....
...until just before 3pm that afternoon. How precious he is, our brave little Smurf. 

Unfortunately no children under 12 years old are allowed in the ward, so Meg and Chrisna had to make do with occassionally sneaking a peak through the doors to see how Sam was doing.

On Day 2, as previously blogged, Sam's catheter was removed and it certainly made him hugely more comfortable. Sam's night nurse for both evenings was Sister Miranda whose care and attentiveness to Sam, together with Sister Claudia on the first evening, was remarkable and so comforting.

Yesterday morning (Day 3) Sam's drip was removed and although it made him a little more mobile and able to hold things, he was in no mood whatsoever to play as the frustration of being so limited in activities coupled with his sensory-based issues of dealing with the unfamiliar surroundings, completely took over.

At least, without the drip, I had more space in which to walk Sam around, in an attempt to calm him down a bit but having Dad getting in the way while taking pics of a rather miz Sam and equally miz Mom, was not too pleasing.

That grouchy frown was quickly turned to into a smile when APF, after asking if I was comfortable managing Sam's care alone, said that we could head home. And so it was goodbye's all round to what nursing staff we could find.....



..and to our Awesome, excellent-catheter-inserting (private wink wink) Prof Fieggen,
who was determined to get a much-eluded smile out of Sam for the pic and, with Murph and Sam being such good friends, the second I moved the camera away Sam DID smile up at Prof.

Side-stepping (something I very rarely do, you know) about something I am very passionate about...finding doctors, specialists and therapists in whom I have unfaultering faith and trust, both in their abilities and, just as importantly, their compassion and drive to do what's not only medically best for Sam, but emotionally and pyschologically best as well. Although there are one or two doctor's we've had to choose not to continue seeing purely because of impracticality in distance, in our short nineteen months we have already encountered a handful of practitioners who I do not feel would have been able to meet these exceptionally high standards I have set for who I choose to care for, as all mom's believe, one of the most important and precious little beings on this planet. And so, I have tended to err rather on the side of emotionally-based decisions when I've been in the unfortunate situation of having to choose between character and experience. But more and more often we have been blessed to have the most amazing doctor's come into Sam's life who greatly exceed all our expectations in both expertise and compassion and manage to find a place into our heart's.

Without doubt, the glory of Sam's unexpectedly speedy and fairly trouble-free recovery belongs to the Lord, but this does not take away from the certainty that we would have had a completely different experience had we not had such an amazing team responsible for Sam's surgery, headed up by Prof Fieggen who obviously executed the actual surgery, with Dr Burke taking care of Sam's anaesthetics again in addition to seeing to Sam's general wellbeing both over this period and at all times by always been willing to offer advice and reassurances on Sam's care, by pulling the whole surgery together when we thought it might be postponed again and who referred me to Prof Fieggen, together with Dr Sinclair (paediatrician) who oversaw Sam's care at the hospital. We truly believe that, whether they are aware of it or not, the Lord has manifested their roles in Sam's life to help him achieve his purpose here as a testimony to others that with God, all things are possible.

So, it feels almost surreal to be at home with our little Smurf fast alseep in his cot at the moment, even though he slept from 7:30pm last night until 9:25am this morning...yes, it is definitely our child we brought home - we have the hospital Id tags to prove it. Obviously, we have made no plans for Christmas as we'd anticipated still being in hospital right up until Christmas Eve, if not Christmas Day itself, so it's quite entertaining watching the rest of the world go by in a hustle with last-minute shopping and preparations as we sit back quite relaxed with no other plans other than to help our little smurf heal.

Before I sign off - we wish to thank each and every person that has prayed for Sam, enquired about him and/or offered help in any form as they too have been instrumental in making this journey easier to bear :

Especially to Granny, Ouma and Oupa, Uncle Joe, Aunty Mandie, Aunty Anthea, Jacqui (Matt's mommy), Aunty Janina and Aunty Cammy for their many sms's and calls, as well as to Aunty's Saskia and Anny, Hendrik, Henriette, Colleen, Lee and Nic the girls, Aunty Tammy (Payton's mommy), Diane Louw & family, the de Freita's family, Adelle and Marthinus and the girls, Aunty Vanessa, Rona, Catherine, Megan W, Aunty Eulita and Uncle Allan, Jurgen and Kim, Alexander and Joshua, Mason Josias's mommy, Jessica (Alex's mommy), Cindy (Natalie's mommy), Brandi (Nathan's mommy), Vickie (Jodie's mommy), Marianne, Trevor & Family, Quinton and Mildred, Uncle Willie and Aunty Elspeth for Sam's precious teddy and to each and every member of Brackenfell Community Church who have been praying every Sunday for weeks and at every bible study and Sunday school class and a special thank you to our Pastor Johan and his wife, Ilse and their daughter, Janie, who made quite a lengthy trip to the hospital on Monday afternoon just to pray for Sam and to anyone else who we perhaps do not know personally or perhaps a name or two or (in my case) ten which I might have forgotten to mention here.

2 comments:

  1. hi you guys i am so glad you are home!sam smurf you are such a brave little boy and nicky and "faan"you are the beste parents he could have.love u lots

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  2. Whoo hoo! I'm so glad everything went so well. Praise God! And Merry Christmas to your whole family...how wonderful to be celebrating at home.

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