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, January 19, 2011

Hey....where'd my hair go?

Well, I can tell you that it took a gruelling forty-five minutes to get that hair going ANYWHERE! As Sam does not do great with hair clippers, I have to cut his hair with a scissors....which works oh so well on a flapping, not-giving-up-on-jumping, little smurf. So, there is a reason why this pic is only of the front view as at the back there are still one....or two.....maybe three, patches of long hair. But at least the shaggy-dog look has been tackled once again so this should hold us for a while. I was so....SOOOOO...looking forward to Sam's first bath since his surgery, he absolutely loves his evening baths and I had some crazy idea that being able to throw this back into his evening routine, might bring about some improvements. So it was really quite disappointing when I put him into the bath and he clung terrified to my neck...for the entire bathtime....two night's in a row. From the third night on, he has managed to relax enough to be able to at least bang his little plastic boat against the side of the bath, but only as long as my hand stays resting on his back. We are not without any progress though, over the past two days Sam has taken considerable weight on his right leg again and even made an attempt at trying to co-ordinate some kind of walking, albeit still on his toes. Also, although there has been one or two bad nights with Sam still waking up at least once or twice after being put down, the fight to be put to sleep has definitely toned down a bit. Of the five steri-strips which were originally placed over Sam's cut, only two remain. The other three have come off on their own while in the bath so I have decided to allow the other two to come off in their own good time as well. The area is obviously still incredibly itchy but, thankfully, the majority of the cut is covered by Sam's diaper so it's only when changing or bathing him that that little thumb (with the awesome help of  that hyperextensible elbow - knew it would come in handy some day) manages within a split-second to sneak a scratch or two in.

There are so many therapies and doctor appointments I was meant to have confirmed by now, but this past week has been fairly chaotic with the beginning of the new school year on Monday for Meghan...who, on the second day already, was sent home with severe earache. The call couldn't have come at a more impossible time as I was at that very moment being shepherded haphazardly through a three-and-a-half hour registration process for Luke's college enrolment. Luckily Brampies was prepared to help out and fetched Meghan for me. After a doctor's appointment, it was confirmed that Meghan has quite a hectic outer ear infection.  The diagnosis came as no surprise to me, as I predicted on Saturday morning already we'd be heading this way after Meg complained of earache towards the end of last week (after sometimes spending hour-upon-hour in the swimming pool) but still insisted on attending a swimming party she'd been invited to. That must surely be some kind of record? Being absent after only one and half days into the school year? Anyway, it was hard to withhold sympathy after the pain left her in tears for many hours, even right through the night. Today alternated between periods of crying in pain as painmeds wore off and then the relief after been given another dose. I feel terrible that she has already missed over a day of school as, with her sometimes still-very-present insecurities regarding unfamiliar routines, etc. I think it would have been best for her to be a part of the class settling into their new classroom and getting to know their teacher...but what could I do? Send her to school bawling her eyes out and with a temp of 39ÂșC? I am hoping that after having her third dose of antibiotics this evening, there will be a huge improvement by tomorrow morning...enough for her to try and manage a day at school. Here's holding thumbs.......

An utterly miserable looking Meg :(

Little Smurf is still very keen on his "talking" (consisting of a charming combination of "oooooh's" and gag-inducing grunts). I took such an amazingly funny video of him having a conversation with Chris but couldn't find a way to reduce the size of the video enough to upload it - such a pity. So tried to capture what I could with normal photo's........

This talking is S.U.C.H. serious business takes every bit of effort my little smurf-self can muster!

Luke hopefully starts his foundation level college course on Monday, presuming I can manage to find him a lift to-and-from the campus within the next two days (Y.I.K.E.S.) and then our days should largely have returned to normal so I can get cracking on all Sam's pending appointments. It feels like everything is a little out-of-control at the moment so I cannot wait to regain some order of "normality" to our lives......WAAHAAA! Who am I kidding? The only thing normal in our lives anymore is the complete certainty that there is NO normal!

"Normal" is nothing more than a cycle on a washing machine!
Whoopi Goldberg

1 comment:

  1. OH LOVE THE NEW HAIR STYLE!!! Thrilled about the weight-bearing on foot. Thrilled about the talking. HUGS