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)

Tuesday, October 18, 2011

The Overflow of the Heart.....

"For out of the overflow of the heart the mouth speaks."  (Matt 12:34)

So, if our heart is troubled then so are our words. This is why I often choose not to blog during particularly trying times but to rather be still for a while until, almost always, someone (usually uknowingly) puts everything into perspective again. Oh for sure when the problems are as annoying, but still relatively superficial, as self-righteous remarks made in a doctor's room or a derogatory comment made by a small boy lacking guidance and a good set of values, I cannot wait to pounce on the keyboard and vent my anger. But when, instead of anger, you are dealing with fear and downheartedness - emotions which are far more difficult to overcome - sometimes it takes a little longer to work through. Just as importantly, I don't want Sam's blog to become one neverending mash of melancholy filled with doom and gloom posts about how awful it can be to have a child with special needs.

If I had given daily reports about Sam's wellbeing over the past week, it would have been nothing as spectacular as near-death experiences or fatal diagnosis' or anything nearly as soap-opera-like as that. It would have been seemingly insignificant issues like the fact that when fetching Meghan from school one day, as one of her friends walked up to greet Sam with a lovely smile, she received a blow to the face in return. Or that one afternoon, while trying to collect Sam's medication from the chemist, he threw such violent, screaming tantrums that, with trying to co-ordinate holding on to my wallet, holding the meds and signing the cash slip, he almost threw himself completely out of my arms and onto the floor, amidst a good few "shames" from other customers and one smug dad who looked at me and then pointedly looked at his daughter of roughly the same age, who was sitting angel-like in the trolley, and gave her a kiss on the forehead as if to say "See, this is how it should be...". There would be mention of a generally aggressive, exceptionally frustrated and obviously unhappy little boy who has smiled seldom over the last few days while now making a habit of rocking on all fours while hitting his forehead into the head of his cot, the cupboard doors or even the safety gate.

Now I am so not the kind of person that likes surprises or guessing games and my close family will readily vouch for that after the number of times I ask them to tell me the endings of movies or the perhaps unanticipated reaction Chris gets when he tells me to just get in the car and when I ask where we're going, he says "You'll see..." or something to that effect. I don't do surprises...more importantly, I don't do the unknown. Not because I am that boring - although I do so *LOVE* boring and predictable...but because I want to always be absolutely 100% prepared. I want to be prepared for a bad/sad ending in a movie - I will still watch it, I just want to prepare myself. I want to be prepared for a "surprise" journey, so that I know what to take with, what to wear, the length of the journey, etc. And, perhaps the most important and most delicate matter in our lives at the moment, I want to be completely, utterly and unquestionably prepared for Sam...and I am not. Because I don't know how to ease his discomfort or pain, I don't know how to remedy his frustration at not being able to communicate and I don't know how to take away his sensory issues.

I am quite sure that one, or all, of these three things are responsible for where Sam is at the moment. I say that he has pain/discomfort because when I lie next to him at night while he tosses and literally thrashes himself around in the bed NON-STOP, he often takes my hand and presses it to his groin in the area where his two large cuts are from the last operation. I test his urine regularly, so I know for sure its not a bladder infection. I say frustration at not being able to communicate because when before he would make gentle gestures with his hand about something he wanted or somewhere he wanted to go, he now thrashes his little arm out angrily and grunts and moans or, if you are standing up or your back is to him, he will crawl up behind you and hit you...powerfully and aggressively. And I say sensory issues because of the constantly banging his head up against things and the fact that (with the exception of some progress in his hand defensiveness) there has been absolutely no improvement with regards to being able to sit him down on the floor without him getting scared, moving him around in the car, lying him back in the bath to wash his hair, etc.

Nothing has changed, while I sit and type this post, except the fact that I read two separate updates yesterday from other RTS moms about about how good life is for them right now (can't even remember if it was on FB or their actual blogs - have to resort to skimming for now)...the word "perfect" might even have been used. Both of these moms have four-year old little boys with RTS and while it was by no means a mind-blowing jolt into the reassuring realm of perspective, it did put my mind a little at ease that there will come a time, the Lord willing, when I can also make a similar statement.

For now, we keep going because we have to...although fantasising about a little village/town where EVERYONE living there either has their own special needs angel or is close family to or valuable source of support to a family with a special needs child, sure helps sometimes...a village where unacceptance, scorn, misconceptions, judgement and self-righteous are a forbidden law. A little village complete with a hospital and intervention centre filled to the brim with caring, compassionate and inspirations specialists, school and daycare centre, shopping centre, theme park, recreation centre complete with an undercover, sensory-pleasing swimming pool, SN-friendly churches and restaurants...I could go on and on... "Oh Happy Days...Oh Happy Days"

Random pics :

Meg had her athletics day on Friday. I had originally planned on taking Sam with me, but due to his rather unsocial behaviour lately decided not to - thank goodness! The activities were eventually rained out due to rather miserable weather. Sam would have loved seeing the 'Linka Smurfs though. Luckily over the past couple of weeks Meghan has done several (a day) renditions of each and every cheerleading song they were going to be signing so we, Sam included, possibly know the actions better than what the smurfs did.

Meg, Kaylee and Jenna moments before they sprung away with their high jump (pardon the pun).

A pic I posted on FB on Sunday of Sam reading to his teddies!

Sam trying to show of his iPadding abilities...I left him (albeit surrounded with cushions and plonkey's as one would a 5 month old baby) with Old Macdonal E-I-E-I-Oing on his iPad and next thing he'd found his way to the photo's I'd used for the iComm app...

Something really positive that happened this morning. While feeding Sam, who was holding his favourite number 5, he slowly and deliberately placed 5 into his bowl of Kreemy Meal. Ordinarily this would not be reason for excitement, unless you are dealing with a little boy who is extremely sensory defensive in his hands. He then took 5 back out again, messed with his other hand in the little bit of porridge that had landed on his tray and continued to hold 5, although rather gingerly between two fingers, while he carried on playing!

Definite progress!


1 comment:

  1. Hugs, Nicky. If you want to be prepared in advance, this is what I know: Sam will bring you lots of joy and lots of heartache.

    That's it...that's all I can tell you to be prepared for! I don't know when he will do either, but I know that he will, and it's our job to savor those joyful times and comfort our kids during the heartache.

    God chose us for our kids, without us knowing why. Or maybe we do know why, deep down, but it wouldn't have been something we would expect or want.