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)

Wednesday, April 13, 2011

Desperately Seeking Profound!

First, some catching up on pics.....

We didn't take many photo's while in Stilbaai last week but did manage to snap a few of the very first thing which caught Sam's attention....Ouma's piano! And of course, every time you walked past the piano or anywhere near it, that crooked little finger would gesture wildly at it.

The piano is somewhat different to Meghan's keyboard, which is what Sam is used to "playing" on, so it took a quick moment to familiarise himself with it and a little more concentration....."Mmmmm...let's see. Chopstix, okay, these two fingers go here...wait, wait...or is it.......?' 

"Aaaahhh, finally figured it out and we're into full swing Chopstix!"
One of Barney's episodes does actually feature a boy and a girl playing Chopstix together and when you tell Sam to "play Chopstix" he automatically sticks those two little fingers out and pounds away at the keys.

The normal procedure for car travelling is that Meghan has to read and knock for Sam throughout most of the trip, however, Sam decided it was time to return the favour and read a story for Meghan on the way back from SB, while she slept. 

With Sam still not doing much independant sitting and self-entertaining while we work on his SID, it has become remarkably difficult to keep him occupied during the day, not to mention trying to find even just a five/ten minute gap to make a bottle, throw some clothes in the washer, etc. So, with Sam's birthday only a month away, we opted for an early pressie which will, hopefully, provide some variety of entertainment until he's "okay" enough to be able to spend ten minutes playing while I do something. For now though, he is still quite frightened of anything remotely new or unfamiliar regardless of how many charming characters and exciting noises it makes, so he has to be re-introduced to his little Toy Story ride-on every time you put him in it...which is a little taxing, but eventually he relaxes enough to allow you to seat him on it and take him for a five minute walk around the house. We also bought him a little swing, as recommended by his OT, which we will be able to use both inside and outside of the house.

 The ride-on happens to fit perfectly under the keyboard which is a bonus and provides a charming "pitstop" for our sitting room journeys.

 Sam has, at last, had a haircut...or rather, something vaguely resembling a haircut. It had to be done in two shifts as he absolutely refuses to sit still, so the right side was done on Sunday evening and the left side on Monday evening. Yes, I know...rather weird, but it's all we can manage without making Sam upset to the point where he "v-word's". Thankfully (for once) we have what one might refer to as a low-key social life, so Sam sporting a lopsided haircut for a day was not all that distressful :)

On to the subject of sleeping. Our little man has decided to, again, combine two of his most exhausting traits together - the "v-word" and screaming himself to sleep. So, up until last night, we were back to Sam point blank refusing to go to sleep at night, regardless of how long I walked him for and sweet-talked him in an effort to try and keep him calm. The first challenge is that lately he refuses to be walked in a lying position, which means you need to hold him upright at a 45º angle to your chest with one arm, while supporting his back and neck with the other. The moment you try and edge him ever-so-slightly into a horizontal position, he starts crying. (I know what the normal first response would be - ear infection? But nope, his ears have been checked three times since he's adopted this new "sleep" position and they're perfect). Even though he only weighs 9.75kg's, this is quite a hold to maintain for whatever time period it takes for him to fall asleep, which can be anything between thirty to forty-five minutes, and is usually accompanied by him trying to push against you in an effort to avoid sleep, which then leads to me trying to shift his position, which leads to him screaming and v-wording and then screaming some more because we now have to wash him down and re-dress him, after which he will eventually cry himself to sleep.

Over the past few days though I have just placed him in his cot for his morning nap, instead of walking him and he has managed to actually fall asleep. So last night I tried the same thing with his bedtime and, although it took thirty-five minutes, he did eventually fall asleep. I thought WOOOOHOOOOO....we've overcome one major taboo in our household. But alas, come naptime this morning....he cried when I put him down in his cot, so I landed up doing the the 45º-walk-of-torture! And, if you put him in his cot and he disapproves, he simply trashes the place.......
...and finds it all too amusing!

We have OT again tomorrow morning so I will hopefully remember to mention the sleeping problem to her and ask for some advice.

I think Sam's being generally unsettled (for lack of a better word) at the moment is having a definite effect on my own emotional state of mind as I am sure it would for all moms, whether it be of typical kids or differently abled. I keep feeling like I am missing something, something of utmost importance which might have placed Sam in this sensory unstable place and might prevent him from coming back from it unless I can figure out what it is. A few days ago I took out some more books from the library written by parents of special needs kids and keep skimming the pages, desperately looking for some phrase....some profound piece of precious information....which might jump out at me and point me in the right direction of what it is I/Sam/we are lacking which could turn our lives around. It is so frustrating when I don't see that phrase, don't feel that startling jolt as something finally connects in this worn-out mind of mine and the light, at long last, goes on....and stays on!

Of course, being in South Africa, our resources here pale in comparison to our overseas RTS families and books on more common syndromes/disorders are limited and hopelessly out of date, not to even mention something as rare as RTS. So, I had to laugh at the one book I opened on Monday in which one of the first things the author warns about is relying on antiquated and obsolete books, etc and details her own frustration when purchasing a book on Cystic Fibrosis, only to find it had been published almost twenty years earlier. The very next thing I did was turn to the front of the book only to see that this very book had been published in 1990!


But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isa. 40:31

A pressing need, a burdened heart,
A longing in my soul that won’t depart-
My trouble burns as a brand upon my spiritual man,
But our all-knowing God has a plan.

I want, I pray, I beg- I plead,
My heart burdened with a Goliath need;
Our Lord knows- we surmise,
And our petitions He will not despise.

But God doesn’t answer right away,
Though with much expectation we pray.
"Wait" - our Master seems to say-
To a heart grieved day by day.

The wait is not in vain-
Giving hope amidst all our pain.
The Lord shall turn our loss into gain,
Though God’s ways we cannot explain.

~ Gene Griffin ~

1 comment:

  1. Hugs, Nicky. I can only imagine what you're going through right now. I can only encourage you that it won't last forever...God will show you a solution, and he will give you the strength to continue.