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, May 27, 2010

HALLO PAYTON - A NEW RTS SISTER

In October last year we found out that Jacqui's friend's sister had given birth to a little RTS angel named Payton and that she had been transferred to the very same NICU which Sammy spent the first nine weeks of his life in. A few weeks later Jacqui and I went to visit Payton's mommy, Tammy (I did blog about this briefly) but as Payton was still in hospital we just got to see photographs of her and got to know her through chatting with Tammy.

Tammy and I remained in contact but with both of us settling into our "new" RTS lives, never got round to meeting again up until this last Saturday when Tammy, Shawn and Payton came to visit. It was so awesome to share similar experiences and almost get excited (is that weird) when finding out that Samuel and Payton have the same rts-erisms.

When Tammy lays Payton down to change her, she does the same kind of "heavy-breathing" that Sam does and, if you close your eyes, sounds exactly like Sam. She also laughs just like him and has the trademark red mark on her forehead as well as the reflux synonomous with our RTS kiddies and Payton's thumbs are not hectically angulated, but are definitely broad.

Payton was going back to the heart specialist this week to find out if her valve had managed to close on its own, which obviously we are hoping it has so that she doesn't have to undergo any surgery. I will keep you updated.

We managed to snap a few photo's but it was quite difficult trying to co-ordinate the pics as either Sam or Payton was moaning at any given time...aaaah, it was so amazing to be sharing this first-hand with someone else :-)





So, what's new with Smidgey Smurf - well we went for a second opthalmologist appointment on Tuesday at Vincent Pallotti (the hospital where Sam is having his op) and this opthalmologist is also fairly positive that there is no glaucoma at all. Sam's strabismus is still quite obvious but apparently this will more than likely correct itself as he gets older. His right eye is also doing a funny kind of thing - don't know if I can explain it properly but sometimes it appears as though the entire eyeball is "ticking" (rotating very quickly back-and-forth). It is pretty freaky to watch it and worries us a little, but we have told Dr Perrott about it so he can check the necessary on Thursday morning.
I have to admit that up until about 3:00pm yesterday afternoon I was still fighting the urge to phone the hand specialist (*more about this later) doing Sam's op to ask if there was no chance we could wait a year before straightening his thumbs. Sure I know the theory behind doing it now - as he gets older the thumbs are becoming more curved making it more difficult to straighten the bone - knowing the theory isn't helping me feel more at ease though :-) BUT yesterday afternoon Sam was eating a chippie (Simba cheese puff - his mouth sensitivity is so selective) and actually holding it himself but once he'd got halfway through the chip, every time he tried to put it in his mouth his little Sam-thumb got in the way and he just couldn't figure out how to manipulate his hand to bypass that little thumb and get to the chip. So, for the first time I genuinely felt that perhaps it really is in Sam's best interest to have his thumbs done now.
* When we were at the hospital on Tuesday to see the opthalmologist the panic really started setting in, being in the actual place where the operation would take place and all that. We had just left the hospital and were driving home and I just finished whinging to Chris, yet again, about how we should wait before going ahead with the op blah blah blah. Barely 10 minutes later Chris' cell rang and as he was driving I answered it - it was Sam's orthopaedic surgeon (the one who referred us to Dr Carter, the specialist). Long story short I told him I was having mild (yah right) anxiety attacks about the what's and when's and he calmly told me that Dr Carter is one of the best hand surgeons (pretty much reiterating what Matt Tooke's daddy had told me) and that if he felt we had to do the op now, then I had to trust that he knew what he was talking about. It was so weird the way it happened.
So folks, we are moving past me wailing endlessly like a spoilt little girl that I don't want the op now (well, those are my intentions at the very least).
Mmmm...this hasn't been much about Smidgey Smurf....let's try again - Smidgey is still LOVING his food (I don't know what bug has bitten him but I ain't complaining). He has recently started protesting against not only his normal Sam-erisms (getting dressed, sitting, therapy, lying on his stomach) but things like when I need to remove the boat from his hand which "followed" him out the bath, in order to put his arm through the sleeve. Or when trying to put him down for 5 mins after he's being travelling around on your arm all day. He definitely has a very strong will. I am also finding it increasingly difficult to keep him occupied during the day - he requires constant stimulation and activities. But thankfully he is extremely inquisitive about Max, our chinese Chow, and our two kitties, Belle and Jessie, and when I have run out of ideas we basically follow them around so that he can babble and "scream" at them - he goes completely tense with excitement. We've also resorted to hanging a string from the ceiling with bells on it, as well as wind-chimes from the key rack to make our back-and-forth trips around the house more exciting....you know what they say "Desperate times......."
Sam's actually been quite crabby the past two days and is making a new "gesture" with his mouth (almost like clashing his teeth - if he had them) so I am wondering if perhaps there aren't actually teeth on the way. We can see the two little white spots in his gum, but its looked the same for the past couple of months, so not really sure. Well, his corrected age would see him turning one only on the 8 July, perhaps he will have teeth by then after all (although with the amount of shoulder/arm/finger biting he does, not sure if this is something to be wishing for).

On Sunday Ouma and Oupa are coming to overnight by us for Chris' birthday on Monday, as well as to bring us a few tops that Ouma made especially to accommodate Sam's splints and then they will be back again on Friday, the day after the op. On Tuesday I have a meeting with the anaesthesiologist which I am looking forward to (if you can call it that, guess it's the reassurance I am looking forward to). If we make it till then, that is. Grampa told us this evening that he heard on the news (or read in the paper, either one of those two, both of which I never get to do anymore) that some-or-other scientist/geologist/proff-type-person reckons that within the next month either Cape Town (where we are) or Johannesburg are going to be hit with a mega-quake! Apparently Nostradamus also predicted something along the lines of an earthquake in Africa in 2010. Really Dad, if you HAVE to divulge that kind of information could you at least provide more specific details like exactly which city, town, suburb, street, day, time, etc.
Ciao all!

Friday, May 21, 2010

HAPPY FIRST BIRTHDAY SAM!

It's almost hard to believe that it's been ONE WHOLE YEAR since our little Smidgey Smurf fought his way into this world...ONE WHOLE YEAR since we first heard the words Rubinstein-Taybi Syndrome...ONE WHOLE YEAR since we left the hospital without the baby we came there to deliver, feeling robbed and devastated of what was meant to be such a celebrated occasion...ONE WHOLE YEAR since I had a single solid night's sleep (with the exception of that very first night Sammy was born, thanx to a MEGA dose of morphine)...ONE WHOLE YEAR since I battled to fit into our shower (it's a really small shower, okay)...ONE WHOLE YEAR since I had a little Smidgey kicking me in the ribs in the middle of the night...ONE WHOLE YEAR since I sometimes had to get up ten times during the night, still half asleep, to use the loo (we're down to only three times now)...Mmm, okay, guess there have been one or two positives there -just kidding, of course there's been heaps of positives like making new friends (whether it be in person or through cyber-connections) and having this whole new group of wonderful RTS angels enter our lives, who teach us every day about courage, hope, patience, love, acceptance, perseverance and, perhaps the most important, to never take anything for granted and to cherish every moment.

Seriously though, thinking back that this time last year our little elf was lying so tiny and fragile in his incubator really leaves you in awe that you have made it so far and not only made it through, but that you've made it through in one piece and can still manage a smile and hey, even a laugh most of the time.


I also can't believe how much Sammy's face has changed since he was born. Of course his "cpap nose" eventually disappearing makes, I think, alot of difference.

So, here we are with our one year old Samuel Christian de Beer (aka Smidgey/Grumpy/Jokey/Barfy Smurf, Little Elf, Little Monkey, Fievel) having just celebrated a whole year of being Sam!



Sam was quite impressed with his very first EVER birthday card which he received all the way from Pearly Beach from his Granny and Aunty Alvie & Uncle Charlie and made sure he savoured and memorised every last word of it, even the barcode on the back (he's sure to be a clever lad this one).


And after thoroughly studying his card he spent some time showing his new friends on Noah's Ark all the other wonderful things you can use birthday cards for (Sam's very into "keeping it green"). Here he's busy demonstrating how to make a.......a.......a......funnel-type-thing?

Another cool new toy that has all sorts of shapes and colours and sounds on it, although the first few days with this toy were touch-and-go as one of the little cars make the sound of a siren which instantly made Sam cry (thank goodness it seems to have passed).


Sam all of a sudden has really started enjoying his baby food (although we're still only alternating between two flavours - oats & honey and creamy carrots & (you guessed it) honey. He even gets excited now when he sees me bringing his little bowl. On Saturday morning I made him pancakes seeing as he appears to be getting over his food-phobia and, if we had to wait for him to get his first tooth I might be too old and bent-over to reach the top of the stove (as it is I barely make it) but it was a no-go, the tiny micro-crumb of pancake hadn't even touched his tongue before he started gagging and coughing. But offer him a piece of cupcake mind you and all of a sudden that hectic gagging reflex disappears. Could it be that my son has a sweet tooth? I really can't imagine where he would have inherited it from seeing as I am a very healthy eater myself (of course my fingers aren't crossed behind my back, really!)


And there you have it....undeniable proof! I wonder what butternut tastes like with honey...and potatoes with honey....and chicken with honey...and pasta with honey!

Sam is still not sitting, although he does occasionally manage a few minutes here and there, but he loves being on his feet...in fact, it's almost a sure-fire way to get him to stop moaning when he's agitated.

Sam's crown that Meg made for him a few weeks after he came home from NICU last year became a little too small (we know that at least one part of his body is growing then), so she was kind enough to make him another one for Saturday.

And yes, we are still doing neuro-therapy every week and even occasionally make it through a few exercises before the scream/vomit assault begins.



And all the hard work (the hard work being the crying and tantrums which he puts a whole lot more effort into than the actual therapy) leaves Sam absolutely exhausted and, on a rare occasion, he even passes out for at least like ten minutes.


So, what else have we been up to the past week or so - well Meg had her very first official choir Eisteddford. It was so precious, when they first started singing I became so emotional and then I noticed how the rest of the audience were reacting with delight and loads of "aaawwwhhh's" and that made me even more emotional. This whole emotional thing is really snowballing lately - you should see how I bawl my eyes out every time someone else gets voted out of Idols, regardless of whether I actually liked them or not...in fact, even adverts make me cry lately.
Anyway, then we had an unbelievable three week+ struggle with our medical aid to get them to approve Samuel's Synargis injections for the RSV season 2010 because apparently been born two months early with lung disease, being ventilated for 7 weeks after his birth and having pneumonia twice in a couple of months is just not reason to believe that he might be vulnerable to RSV/Pneumonia! Hallo - is there anybody in there? So, eventually we received authorisation for Sam to have four of the five injections during the period April - July, but get this - they only approved it halfway through May!!!! Now, taking that the injections are given at four week intervals I have yet to receive their proposal suggesting how on earth this is a solution. Stay tuned - if not to this blog, to CNN for any reports of a short, sobbing, chocolate-mouthed crazy lady assaulting the staff at *beep beep* with rotten eggs or something equally vile. Of course you'll know its not me because I don't do chocolate, being a healthy-eater and all that.
We've also had lots of backing-and-forthing in preparation for Sam's op on 3rd June to have his thumbs straightened, as well as a full glaucoma examination. Of course I am terrified...it'll be the first time Sam is having anaesthetic which is more scarey to me at this point than the looming six weeks in splints he's going to have to endure. But I am meeting with the anaesthetist on Tuesday, 1 June to go over all the necessary concerns....and unnecessary concerns as well. I think the most frightening is that it's not at our usual hospital with our usual team so I am feeling a little "out there" at the moment. But the surgeon doing the operation seems really wonderful and we've had some awesome advice from Matthew Tooke's daddy as well which has helped ease the fear a little and I am sure after meeting the anaesthetist the only worry left will be the actual operation and recovery period (and maybe if I keep telling myself that I might actually believe it).
Tomorrow Meg and I are going to an ice-skating party....or at least Meghan is the one invited, but seeing as I am going to be there I may as well go round the ice once or twice (providing they have Medics or at least an oxygen tank nearby). And we have plans to get together with another RTS sister of Sammy's, Payton (6 mnths), sometime over the weekend which is going to be AWESOME. I will definitely post pics.
In closing, we are ever so thankful that we have such amazing family and friends who really made Sam feel special on his first birthday, we are thankful that although there have been some challenging times there have also been the most amazing & blessed times as well, we are thankful that we get to begin yet another year with our little Sam. And as always, we know there are those who desperately need our prayers and tonight we are thinking especially of : Aunty Dot, Kevin, Angel, Yvonne and Marc & their families as they grieve the loss of their husband/dad, Andries ; little Jesus as he battles again with his lungs & breathing ; the Tookes and our "Little Grabber" as his journey is faced with yet another challenging condition which sees him and his family moving to Schmolland!

Thursday, May 6, 2010

BOETA DIRK

Sammy was blessed with a brand new cousin last Thursday. "Boeta Dirk", as adoring older brother Hendrik (Jnr) calls him, weighed in at a healthy 3.34kg and measuring 52cm....just 12cm shorter than Sammy - Better get a move on there, Sam.

I don't know which is cuter here....gorgeous little Dirk

or that stunningly adorable smile on Hendrik Jnr's proud little face,

they're both pretty precious!

CONGRATULATIONS HENDRIK & DEIRDRE

and of course

HENDRIK JNR

Saturday, May 1, 2010

THE BLESSING OF SUFFERING

I promised myself a while ago that I would stop asking the "Why us?" 's of why we are on this particular journey, trusting (or trying to) that this answer will be revealed at some point along the way. I do believe with my whole heart that our God is not the kind of God that would purposefully "make" a child handicapped, ill, etc purely because He thinks I am a more suitably "special needs" parent than my next-door neighbour. I do believe that tragedies like genetic abnormalities are part of the consequence of the fall of man from God's grace into the luring clutches of Satan those many years ago and that, although He certainly has the power to heal at His will, that God has to allow certain trials, tests and, yes, suffering in order for us to fulfill that particular plan He has for us, whether it be to strengthen our faith, or discover a new life purpose or whatever it might be. But when you are in the throw of a particularly challening stage like we are now with Sammy having being hospitalised again with pneumonia and a severe infection in his upper-airways, when he's so uncomfortable and battling to do basic things like feed, breathe, sleep....then it's not always that easy to rest peacefully on those beliefs. And you look around and see other good followers of Christ also suffering with their own challenges...whether its the quickly failing health of a lifelong partner, the loss of yet another precious baby, the difficulty and unrelenting hardships of trying to pick your life up again from the dark abyss of addiction, .....and sometimes those beliefs momentarily leave our heart and we falter and ask why God's people suffer so?

Edward Kuhlman says, "PAIN is the fundamental human predicament. No-one escapes life without experiencing pain, although many become preoccupied with attempts to alleviate it. Pain is the overriding, inexplicable condition of life...the touchstone of our lives. In this "trysting place" heaven and earth meet....here we meet each other in humanity and, more important, God meets us."

David Biebel writes :

"To know that in my weakness, He is strong.
To learn to trust, even when I cannot feel the ground.
To understand that I am NO master of my destiny.
To become wiser and more real."

"Do not pretend. Do not lie, but look your struggle in the eye, whenever you can, with help if you need it..and slowly, as slowly as necessary, come to terms with it. All the while remember that your life is in God's hands and that He understands struggle and is far more patient, gracious and forgiving than you can imagine."

So today, this is me....being REAL and NOT PRETENDING...because today I am frustrated and exhausted and sad....so sad that my precious, fragile little angel is battling so immensely to get well, because I know we are not yet even a micro-step down the path that we're travelling on, which is going to be filled with far more daunting challenges, and I want Sammy to be as strong as possible so that he can face all future trials head-on. And even though I am struggling a little with God today....I know that He is patient and understands and that He forgives me, as He did both Job and Jacob.

"Praise be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
2 Corinthians 1:3-4

THE BLESSING OF SUFFERING

"Suffering? Really? Are you wondering if this is a misprint? It is not. Of course you don't like to suffer. What kind of fool would seek out pain?

Think about it though - how do you strengthen and tone your body's muscles to make them as effective as possible? You exercise them which takes effort and work and sometimes results in a bit of pain. The work you put your muscles through teaches them to be stronger.

Your faith grows in the same way. The more you are required to walk by faith through suffering and pain, the stronger your faith grows. So, suffering is a blessing because it helps you grow deeper in your faith, lean on God more and trust Him to get you through the difficult times.

Suffering is one of the primary ways your faith will grow stronger. So, as James says, "Consider it pure joy whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2) "