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, October 29, 2009

SAM THE CONQUERED :-(

Yip, I am afraid that Sam’s previous conquests are slowly and surely becoming unconquered (is there such a word?). We seem to be back at square one over the past twenty-four hours…there’s no drinking, no sleeping, laboured breathing and no pooing happening to speak of….three and a half months to get right back to where we started on the day he came home, 15th July, (and only 700 grams heavier I might add). Although at least then he still had his feeding tube in, so any milk he wasn’t taking with the bottle was going in through the tube. Don’t have a clue what’s up. So roll on 2:30pm tomorrow afternoon for our appointment with the ENT (do you think it’s possible his constipation could somehow be connected to his ears, nose or throat? Just checking – you never know!) Okay, so maybe not ALL the issues will be sorted out tomorrow…but hopefully most of them, just in time for Weekend Syndrome….YEAH! Well, thanks to Olla-Flowa, I got my hands on a copy of “Baby Sense” and have tried some of the suggested methods this morning and after even getting a chance to do some of his physio this morning, so far he has been sleeping for just on forty minutes now, which is already an improvement to his 25 minute naps. Let’s hold thumbs! Wow, what a weird thought…..Sam literally can’t “hold thumbs” like small children tend to do when using that expression….at least he’d never have to put any effort into hitchhiking, his thumbs are automatically designed for that. Oops, better make sure he never wanders onto a road on his own, he might get picked up whether he likes it or not…LOL!

I know I promised some pictures by now but I unfortunately can’t upload any pics from the home pc because the system is just too slow – Chris has promised to do it today from work (hope you’re feeling the pressure Love!) But we do forgive him, he has managed to get hold of two tickets from work for the Nutcracker Ballet on at the Baxter Theatre next Saturday (originally meant for him and I but Sam is still not settled enough to be a candidate for babysitting) so Meg and I are going to have some “Mom-and-Daughter” time, which I presume she is extremely excited about as she left the house this morning calling out the car window “Yeah, an hour and a half of mom-and-daughter time”.

“Can a mother forget the baby at her breast and have no compassion for the child she has borne?” Isaiah 49:15

(mother) “Lord, it is so hard to balance the needs of my children with the realities of life. Help me to be the best mother I can be, grant me the wisdom to make wise choices and give me peace when I am doing all that I can. Amen.”
An extract from Dr James Dobson’s book “Night Lights for Parents”

2 comments:

  1. I'm glad you have some time with Meg. I remember also feeling guilty that Natalie was taking up so much time. But the intensive time requirements eventually diminish and you will feel more balanced in how you spend time with each of your kids. I know it's really hard, what you're going through with Sam right now...it's very similar to our experiences with Natalie. Has he had a swallow study yet to confirm he's not aspirating? His symptoms are similar to Natalie's when she was silently aspirating (aspirating without coughing). Hold on...it does get better, but it might get worse before it gets better. You will make it and God will help you!

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  2. It's so good to hear that things will EVENTUALLY get better. Sam has had a swallow study done, about three months ago and thank goodness he wasn't aspirating. Thank you so much for your encouraging words!

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