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)

Saturday, November 27, 2010

Blessings in disguise?

We've finalised a date for Sam's surgery and it's a little later in December than we were originally working fact, it's five days before Christmas...the 20th December. It's obviously not exactly something you look forward to doing over Christmas time, especially where there are other children in the family...but, for us at this specific time, it's the best we can do. Prof F has an incredibly busy schedule (ultimately a good sign - if it was him fitting into our schedule as opposed to the other way around, I would be a little worried) and from the week of 6 Dec is busy with brain tumour surgeries, etc so can either do Sam on the 3rd December, 20 December or anytime from the middle of January. Dec 3 would mean that we miss out on the Christmas Concert Meghan and Chrisna have been practising so hard for, as well as having to worry about getting Meghan to and from school, homework, etc. Mid-January is right at the beginning of the school year (17 January) which, apart from the task of settling Meghan into her new class, also means various parent/teacher meetings and other goings-on at the school. Chris has a couple of weeks of budget meetings in February which will make it tricky for him to take leave, ultimatey not the best scenario as I would prefer for him to be able to take leave to relieve me from the hospital and then Prof F is overseas in March again. So, remove the emotional and sentimental aspect for a while, 20 December is, logistically, the best option for our family.

I don't know about you, but over the past few years I have heard many many people complaining about how the true meaning of Christmas is becoming more and more distorted by commercialisation but still find it almost impossible not to get swept up in the festive whirlwind of presents that need to get bought and wrapped, trees which need to be assembled and decorated, roasts and trifles which need to be made...and, yes, eaten...and although we do make sure that the heart of the matter, being the birth of our Saviour, does not become totally insignificant to these festive activities, sometimes it is a real challenge to keep this our main focus as we become totally smitten in watching our children enjoy the whole Christmas package. Should there be the same amount of celebrating and cheerfulness if Christmas Eve/Day is not celebrated with a scrumptious dinner/lunch with our family, if there are few or possibly no exchanging of gifts followed by family photo's and children playing games outside? Of course there should be! WOULD there be? Honestly? I really don't know...I want to say that if Christmas lunch is a toasted sarmie from the hospital cafeteria or if gifts are exchanged around a hospital bed, that as long as we don't lose sight of that "true meaning" we should have just as wonderful a Christmas as we were originally planning but sometimes, no matter how hard we try, we just cannot get our heart and our mind on the same page. So what do we do? We try harder of course :) I think the part that worried me the most about Sam's surgery being on the 20th was telling Meghan because, without a doubt, she is the sibling that has sacrificed the most since Sam was born and although I can tell when she's feeling particularly neglected or even a little jealous of the attention Sam needs...she still loves him completely and unconditionally and worries incessantly about him. She often asks me what will happen to Sam if Chris and I die, what he's future is going to be like when he's "old" (to which I usually say that unfortunately we don't know how Sam will be in thirty years or so and she once replied "Oh No, I don't mean THAT old!!!" Hallo! Let's talk again in twenty-seven years about what's "old"). Which reminds me (I might have posted about this already - but just in case) a few days ago while trying to make head-or-tail of what was happening in Meghan's schoolbag-cum-dustbin-cum-lost book cemetary-cum-art collection-cum-cooldrink bottle bermuda triangle I found a Get Well card she made for Sam but obviously forgot to give to him (or probably just couldn't find it) where she wrote that she is sorry that he is "RTS" but that she loves him even though he is "RTS"!

Anyway, surprisingly, I have managed to sway off the topic which was that, although I was a little worried about telling Meg Sam's new surgery date, even though for the first few seconds she looked a little heart-broken, she quite quickly recovered and then you could see that little metaphorical light bulb flash and she asked "So when will we open our presents?" And I expected a different reaction because...?? Perhaps though this whole turn of events is a blessing in disguise...perhaps this year, both parent and child alike, will truly discover and experience this "true meaning of Christmas" which term, so effortlessly, gets exchanged in one conversation after another.

This morning, when we dropped the girls off at the church for concert practice, as always we were asked how Sam's doing and whether we have a finalised date for surgery now and I explained that it's all happening a little later than expected and explained why and one of the Sunday School teachers, Helga, said to me "You don't know yet why it has changed?" So, not sure if she'd previously heard me,I began explaining again about the surgeries Prof F is doing next week, but before I'd said two words she looked at me again and said "You don't know yet why it has changed."

It wasn't a question......

"Live for today, but hold your hands open to tomorrow. Anticipate the future and its changes with joy. There is a seed of God's love in every event, every unpleasant situation in which you may find yourself." :- Barbara Johnson

"When the heart weeps for what is lost, the spirit laughs for what it has found."
- Sufi Aphorism

Tuesday, November 23, 2010

I'll huff....and I'll puff.....

and I'll blow your house down...and all the trees and fences and billboards and thirty-story buildings and maybe even a mountain or two, said the GIANT wolf to the little town. YIKES! So, in case you're wondering what nonsense I am talking now....we're experiencing a slight little breeze here in Cape Town (and they call Port Elizabeth the "Windy City"???!!!) So it made our appointment at Red Cross Childrens Hospital ( Take a peak) this morning just that much more entertaining. Firstly, I was last there about nine years ago (when we had a cancer scare with Meghan - a story for another day) and Chris has never been there so we were slightly clueless as to where was the best place to park in order to avoid been blown off our feet on the way into the hospital...not that there was loads of parking, well that we knew of anyway. So found a parking space, headed towards the building basically following everyone else into this one entrance and, just to make sure we were going the right way, still stopped and asked one staff member where the "Main Entrance" is. He confirmed we were following correctly so we headed through those doors. Once inside the security guard informed us we must go round to the "Main Entrance" (Huh?). Out into the slight breeze again and in at "Main Entrance". Go to Reception who advises us we actually need to go through the OTHER "Main Entrance"! Seriously? Hee Hee! It was actually quite funny, gave Chris and I something to laugh about to take the edge off our nerves. On the way out we shared the lift with ten Grade Two's (or around that age). Chris, being Chris, tried to scare them a little by saying something along the lines of there are loads of doctors walking around with huge big needles. They all looked at him rather google-eyed, while I slapped him on his arm for trying to make them nervous even though he himself is rather scared of needles. (Sorry Love - too much info?) Anyway, their teacher told us that the one little boy is having heart surgery within the next two weeks so they are all pretty used to needles by now.

So, that was our trip to Red Cross this morning. Feels like I am leaving something out....oh yes, Sam's actual appointment. Knew there was an actual point to this post - for a change. So, after another thorough examination and reviewing again the pro's and con's of the surgery, Sam will, in all probability, be going in the week of December 6th, theatre availability permitting. And? And...both Chris and I are confident in Prof F's expertise and judgement and feel 100% certain that this truly is in Sam's best interest. So yes, we will be nervous about the operation and saddened at the thought of Sam experiencing more pain and trauma during the recovery period, but our hearts are at ease that there is no other way and we are not subjecting him to this procedure unnecessarily.

That's about all the news I have for now, other than that it is mine and Chris' anniversary tomorrow! Last year we antagonised about whether we should take a chance and go have an exceptionally quick dinner somewhere while Brampa babysits - quick as in decide on the restaurant beforehand, call in our order before we leave home and ask them to literally have it waiting on the table by the time we arrive together with the bill, once there gulp down alternating mouthfuls of food and wine and while swallowing the last mouthful leave restaurant with break-neck speed to return home! It all sounded so exhausting though that we just gave the idea a miss and had a take-away at home. Sooo, for the last couple of weeks we have been re-visiting this idea again of our FIRST evening (or morning or afternoon for that matter) out without Sam, since his birth. We have discussed the logistics at length but deep down I know that as evening approaches tomorrow we will both cave and opt instead to stay at home. Watch this space.....

Monday, November 22, 2010

Pearly Beach Pics

First things first...we are seeing Prof F tomorrow morning at 9:30am at Red Cross Childrens' Hospital to finalise what's happening with Sam's surgery - Yay! (Definitely not "Yay" for the surgery, which if I could think of anyway to avoid - I most certainly would...but "Yay" for having some more clarity on the hundreds of questions I have bursting from my mind looking for answers - until tomorrow morning when I will, undoubtedly, forget 99 of them).

We had such a wonderful day on Saturday - I am super-pleased we decided to make the trip to Pearly Beach. It only took just over two hours to get there (only?) and although Sam only slept for twenty minutes he was amazing the whole way and didn't moan or cry once (thanks to a whole lotta book-reading, singing, etc). Hey, whatever it takes! He also only slept another twenty minutes on the way back and from the bottom of the pass until we got home (approximately thirty-five minutes) he jumped..and jumped....AND J.U.M.P.E.D!

On the way, just after 7:00 am

We had some breakfast as soon as we arrived and in between that and the wonderful lunch Sammy's Granny and Aunty Alvie prepared for us, there was loads of catching up to do. Uncle Charlie and Granny entertained Sam with some karaoke while I got a chance to eat.

A pic of me and Sam with Granny and Brampa - the very first one, if I am not mistaken, as my folks have been divorced for some time and, living quite a distance apart, we don't get many opportunities to all be together.

Brampa, Uncle Charlie, Aunty Alvie and Granny and Sam,of course.

Sam was in his element...a whole new set of cupboard doors, room doors and security gates to be opened and closed. We've decided that Sam could possibly have a future in any of the following careers...a doorman, a SABS engineer (testing door hinges, handles, windows, etc), a dentist or orthodontist...the sky's the limit where our little Smurf is concerned.

What the weather looked like coming over Sir Lowry's Pass (my favourite - NOT), on the way home. Pretty miserable.

And if there is anything...and I mean ANYTHING lying on the floor...big, small, round, flat, breathing (poor kitty) - you name it...Sam takes it for granted its been put there purely for him to first kick and then try and stand on it.

Meg made a beautiful Happy Birthday card for her granny (the pink one on the left).

Now I am off to go write down all my questions for tomorrow morning.....just have to try and remember to take the darn thing with me when we leave!

P.S. Sam has been asleep for the last two hours and eight minutes...and, yes, I have checked several times to make sure that he is actually still breathing :)

Friday, November 19, 2010


It is Sammy's Granny's birthday today - HAPPY BIRTHDAY GRANNY/MOM!

As mentioned earlier this week (or somewhere roundabout there - not great at time-keeping lately), my mom, aunt and uncle were meant to come down to Cape Town for a visit, however, their plans were unfortunately changed which was quite disappointing as Sammy last saw his Granny in July and, with his (possibly not - more about this later) upcoming surgery, we are spending the holidays at home this year in order to stay near to a hospital, just in case. We are also not sure how much discomfort Sam will be in. So, we decided at the last minute, that we are going to attempt a day-trip to Pearly Beach tomorrow (which means 2.5 hours there and 2.5 hours back...all in one day!). I am hoping that Sam will be okay with the lengthy travelling as, particularly at the moment, we sometimes wait for approximately an hour outside Meg's school in the afternoon waiting for her to come out and he manages quite well with this, even though the car is stationary. At the moment Meg's school is busy with year-end exams which means that the normally staggered finishing times for the various grades, is now converted to the same closing time for the entire school which means a traffic nightmare trying to find parking anytime from forty-five minutes before the bell goes or having to walk a good couple of km's to your car if you don't get there early enough. Thank goodness this is only a once-a-year procedure.

Back to the surgery - Sam's neurosurgeon is currently overseas, where he's been since mid-October. I have been battling to confirm with his office a time and venue for our appointment with him on Monday and so, at this moment, have no actual idea as to whether we are even going to get to see him as he only returns to SA on Sunday, leaving not much time to finalise an appointment. Can only wait and see how Monday pans out.

As for our Smurf - Sam's actually had two really good days (we won't mention the three days prior to that - PHEW!) He had a really good physio session on Wednesday morning (not sure if this is what changed his mood, although I doubt it) and, although he isn't quite near mastering it yet, is slowly but surely starting to get some idea of this whole much-ado-about-nothing crawling stuff we keep trying to ram into him. I don't know if I posted about it, but Sam started sitting properly a couple of weeks ago...I seriously need to sit down one day and read this blog so I actually know whether I am coming or going - it's not like I have an excuse not to have done it yet with all the free time I have during the day/night to sit down and relax, have a cup of (even just slightly) warm tea and spend a good hour or two in front of the pc. Moving along, so Sam showed some great improvement with his "crawling" on Wednesday, although whereas before it was his legs he was battling to co-ordinate, he now moves them quite well but appears to have very poor strength in his arms and, especially, his shoulders. Heidi has thus given strict instructions to completely limit Sam's "walking" which I thought he was really going to cause havoc about, but its actually been not too bad...we spend more time sitting and playing on the carpet and every now and again I just flip him over onto his hands and knees and we practice a little. Whatever has been bugging him over the past few days also seems to have let up a bit - I don't know if its just coincidental, but the Movicol has kicked in nicely so not sure if his constipation issues were the main problem.

We've also decided that we need to get Sam to an OT sooner rather than later, as his paed suggested several months ago. Although it eased up for short while, Sam's Moro Reflex is conspiring with his reflux with the whole comeback performance thing - so, seeing as its now well over a year since this reflex should have subsided, I think its become quite essential that we have him assessed by an OT who, preferably, deals with not only the sensory integration issues but the reflex integration problems as well. First going to wait and see what happens on Monday before going ahead and making any appointments. Speaking of the reflux though, it hasn't reared its ugly head in almost a week now....well, except for a very brief episode when giving Sam his supper tonight - Yay! I so love not having to avoid showers of vomit cascading all the way down my shoulder and back at least once or twice a day. I don't even cringe anymore, before I would still try and out-maneuver the vomit to try and have most of it land on our (yes) newly replaced carpets but I don't even bother anymore. Hey - at least I can throw my clothes in the wash!

Overall, the week has ended on a high note with our Smurf being pretty calm and easygoing...let's just hope this continues into tomorrow's trip :-) As for the rest of the clan - same old, same old....! We've had some pretty warm days which of course Meghan was ecstatic about as I told her she could only start swimming once the temps started hitting the 30's (she's been asking to swim for like the last month or so already). So, on Wednesday I gave in........

Meghan (in full kit) was at first very enthusiastic about how warm the water felt,

until she put more than just her feet in the water! The water is still freezing, having only had a handful of really summery days so far. Sam splashed around in a whole 5mm of water in his little inflatable pool, but couldn't take a pic as I had to sit next to the pool keeping an eye on him. Next time.

And of course, Summer means not only swimming, but also chocolate ice-cream
(Okay, so does Autumn....and Spring.....well, and Winter too).

"Truly, the greater a Christian is, the more he realises his dependence on the prayers of others.  Paul knew full well the power that was against him and he did not hesitate to ask for the prayers of the church in Ephesus.

Notice also that his request for prayer was clear and specific. When you ask someone to pray for you, be equally specific. Don't just say "Pray for me," but "Pray for me that..." 
Selwyn Hughes

Sunday, November 14, 2010

Jumpy Smurf

Sam still loves LOVES L.O.V.E.S. jumping and why not? It's not like he's the one taking all the strain involved in his passion for jumping. Add a bell attached to some elastic string and you've got hours upon hours of smurfin' good entertainment....well, for Sam that is.

Preparing for take-off....

We have lift-off....

And down we go...
...already preparing for the next jump before those tiny feet (little turned-in foot and all) have barely touched ground.

For months we have been contemplating buying one of those Jolly Jumpers for Sam. Personally, I cannot say that I am too fond of them and never even considered buying one for Meg or Luke but, then again, neither Meghan or Luke found jumping as totally delightful as what Sam does and he doesn't really have a whole lot of alternate activities to look forward to every day. Just a month or so ago you could still manage to keep him entertained for a relative period of time just by sitting and reading a book with him or playing with one-or-other noisy toy but Sam's not having any of that anymore...he wants to be on the go all the time. So, eventually we decided we would have a go at buying one but were quite shocked when we found out how expensive they actually are. So, back-tracked then and decided to first give it some more thought as we already have quite a sizeable stash of unused baby goodies which we were confident Sam would find pleasure in, but alas! On Saturday morning we dropped Chrisna and Meghan off at church to practice for their Christmas Concert and when we went back to collect them, Aunty Diane had a stunning surprise for Sam (without knowing that we'd been considering this) - you guessed it, a jolly jumper! Of course we couldn't wait to try it out so immediately hooked it up at the church, as the children were finishing their practice, and Sam took to it immediately amidst an audience of children and Sunday School teachers. Chris and I were like....YAY! We won't need physiotherapy after all for our poor aching arms and backs!!!! BUT when we tried it out at home he kinda smiled for a moment or two and then? Bawled his eyes out! We thought, okay, maybe he's just having one of his "moments" so left it alone for a while and tried again later but got the same reaction. Now I am not sure what could have made the experience at home so distressing but we have only two options 1) We tell Uncle Johan that at least once a day I am going to bring Sam round to the church for some jolly-jumping or 2) At least once a day I am going to be driving round our neighbourhood anxiously searching for some random people to take home in an effort to re-create the audience Sam obviously wants. Or maybe I should just give it a day or two and try again? Okay, lets go with that one!

We decided to take the girls out for an ice-cream at a nearby (acclaimed) No. 1 Garden Centre this afternoon, but were a little disappointed when we got there as it has been some time since we last visited there and found the condition of the little petting zoo and generally the whole play area quite appalling. Nevertheless, the state of the place didn't seem to bother the girls too much (not until each one of them, at different times, ran their barefeet through the ample supply of animal droppings everywhere) so we let them finish their ice-creams and feed the animals, as they desperately wanted to do.

And while the girls played...

Sam slept.

In between jumping, Sam still likes making some time for "walking". It's really quite amusing to see how he automatically lifts his foot when going up a step, without anyone having taught him this. He also uses the same stepping when trying to walk over "Kitty" - poor thing, when he's not trying to simply walk straight over her, he tries to (purposely) stand on her whip-lashing tail.

Well, today certainly started off a bit better than yesterday but by this afternoon Sam was as ratty as anything. I honestly think that a large part of his whinginess is just pure frustration at not being able to be more independant and mobile but, in fairness, there's definitely something else bothering him as well, whether it be his tummy or teeth or the onset of illness. What made our morning quite special though was that at the end of this morning's service, our Minister asked Chris, Sam and I to join him at the front of the church while the congregation prayed for Sam. I don't think I could ever adequately express in words how completely uplifting it is to know that there are so many praying for us and how blessed we are to be part of such a caring and supportive christian family. As always...there has to be a "Sam-spin" on this story - I was holding Sam in my right arm facing me, while Johan stood behind me slightly to my left and as Johan started praying (and yes my eyes should have been closed, but I don't get to do ANYTHING with closed eyes anymore...not even sleep), Sam lifted his right hand in his crooked-type-pointing gesture and seemed to be reaching out to Johan, as if to acknowledge what Johan was saying. And at least we were spared the screaming he subjected us to the last time he was in front of the church, when he was baptised.

Only eight more sleeps till our next appointment with Prof F. I have definitely made peace with the fact that Sam IS going to have the TSC surgery and that it IS definitely in Sam's best interest to do it now before he suffers any further bladder or neurological damage but still have the occasional, momentary lapse of reason like this afternoon when while changing Sam's nappy he promptly showered both himself and my bed (sorry for the graphics) in a pretty impressive fountain of wee and the thought that maybe his bladder's repairing itself somehow quickly flashed through my mind. But by bathtime we were back to his normal dribbling :)

Saturday, November 13, 2010

Can you see the resemblance?

Well, its been some time since I last posted a pic of myself so thought "What the heck.....?"

Okay, so there are one or two minor discrepancies like the colour of this woman's hair, the nice frilly nightgown and dressinggown she had time to put on before bed as opposed to the first mismatched pair of pj's she could grab out of an already darkened room shared with baby (although the slipper-less feet are definitely familiar), the absence of the lovely swollen glands, squelchy ear-noises and sore throat that feels like she's been taking her tea with milk and two blades please...the result of leaving a particularly bad case of tonsilitis to, hopefully, clear up on its own (like its known to do?) before eventually resorting to her doctor for a much-loved course of know, the kind that leaves you feeling about as energetic as a slug who's been taking his tea the same way, but with two puffs of cottonwool as well (always reminds me of that movie with Jim Carey called Me, Myself and Irene" where he gets a bad case of drymouth after taking his medication - I can sooooo relate right now). But add another ten teeth to that baby's mouth and you've got the splitting image of Sam (give or take a shattered window pane or two which usually comes hand-in-hand with Sam's high-pitched screaming). Oh...and of course...that glorious head of hair is missing!

Seriously - we're having a really interesting time as, apart from my tonsilitis, Sam is becoming increasingly more fussy, a time when Mom kinda needs to be on her best form for. I keep thinking that perhaps he's caught some of my germs and is battling with a sore throat or earache or something, so took him off to the doc on Thursday morning just to make sure but she could find no signs of infection or anything nasty at all, other than his rather swollen mouth as the result of cutting, now, three molars. So, I am really hoping that it is merely his teething causing all the drama at the moment, but still remain sceptical because his reflux is also giving us a run for our money at the moment, carpets plus freshly peaking-reflux = not the greatest of scenarios. Another worrying factor is that, although it is one of the most common RTS conditions, Sam never really did battle with constipation as I know many of his RTS siblings have. However, this seems to be changing as even though I am giving him the maximum amount of Duphalac he can have on a daily basis, his tummy is really giving him some problems - something I know can aggravate reflux as well. So we bought some Movicol this afternoon, of which Sam has had his first dose, and are hoping it solves at least this problem.

As for the rest of the clan, the girls are practising frantically for their Christmas Concert taking place on 5 December, as well as wrapping up all the end-of-the-year activities like assessments, class/extra-mural parties, etc. while I count down the days to our next appointment with Prof Fieggen on 22 November. Luke is being...well...Luke, which doesn't involve a whole lotta anything other than playing playstation, playing pc games...(the usual 17 year-old-boy-stuff). Sammy's Granny (my mom) is coming down next week Thursday (which also happens to be her birthday) from Pearly Beach, for a couple of days so we are really looking forward to that and then Sammy's Ouma and Oupa (Chris' folks) are coming down the following weekend from Stilbaai for a visit as well. Last year we made an effort to spend some time in Pearly Beach and Stilbaai but we are not sure what Sam's recovery is going to be like after the surgery so have decided to just play it low-key this year and stay at home :)

Sunday, November 7, 2010

Is it that time already.......

No! Not really! (Well not if you're like me who, being such a shopping enthusiast as it is, generally leaves Christmas shopping for the last minute) But still, for about the past week Meghan has been frantically busy MAKING our Christmas presents (can only imagine that ol' Santa's imparted some vital information to Meg and forgotten to share it with the rest of us). Anyway, I am not exactly sure as to the nature of these presents, just that each gift-making day ends with her wading through a swamp of styrofoam pieces, cellotape, endless paper offcuts, lid-less glue sticks and khoki pens, every scissor in the house she could lay her hands on and a colourful collage of paint stains on her carpet in an attempt to make it safely to her bed. So, at this point, my present is stored safely away in a nice, shiny blue gift bag sitting temptingly on her chair but cellotaped closed, just in case, while I know she is now busy with both Chris' and Sam's. However, her eagerness got the better of her and she decided to give Sam one of his "presents" just a tad early, being the following poem (with original spelling - just keeping it real) :

Sammy, you are the best baby brother ever.
I'm sad that you have to go to hospital (for the TSC surgery)
but I'm happy because your you.
Know-one could ever want a better brother.
I am so happy that I have you as my brother.

I will be EXTREMELY surprised if she makes it to Christmas Day without handing her pressies out early.

Thursday, November 4, 2010

Payton's First Birthday Party...Pics (At last)

Okay, so third attempt lucky - that's how many times I've tried to get this post out :)

As I mentioned last week, this past Saturday, 30th October, was Payton's first birthday party. And, thankfully, Sam managed to stay healthy enough for us to attend. We only managed just over an hour's stay, by which time Sam was becoming quite stressed & overwhelmed by the huge number of people there...yes, our Payton is one popular little girl! And it was also Shawn's (Payton's Daddy) birthday the following day so between the two of them it was a celebration of note. I reminded myself mentally the whole morning before the party "Remember to wish Shawn...Remember to wish Shawn." And did I? Of course not, how do you guys know was only when we were leaving, with Chris, Meg & Sam already in the car and me running down the street to say goodbye to Jacqui, Lloyd, Matt & Nic, that I remembered to shout Happy Birthday! Tsk Tsk!

Anyway, Payton's mommy (Tammy) and Granny (Liz) went to so much trouble with the Minnie Mouse themed decorations and everything came out beautifully. Sam of course LOVED the Minnie ears and you could see him looking around expectantly wondering when we were all going to start doing the Hot Dog Dance (still one of his fav's).

Payton with her Uncle Kevin (who it turns out actually belongs to the same church as we do..small world)

As I said...Sam LOVED the ears - this was taken at home, several hours after the party.

As for the pics, Sam did EVERYTHING he could to make sure he didn't make it easy for us to get a good pic..which meant jumping through each shot. And of course, we got to see Sam's RTS big brother Matt, who had several other moms mesmerised by his beautifully gorgeous eyes...and for the first time, Mattie's little brother Nic who is so exquisite he could easily pass for a porcelain doll. My heart warms instantly when thinking about Jacqui & Lloyd and their precious boys, as I know for sure that I would be in such a different place without their friendship and support and the blessing of having them in our lives is sometimes just so overwhelming. So, yes, it was WONDERFUL to catch up with Jacqui & Lloyd as well.

Matt with the broken arm Jacqui blogged about recently. It was so cute to see him signing, cast & all, and of course to hear him speaking. And when I gave him a goodbye kiss on his cheek, he rewarded me with a "Mwah"

That's unfortunately the only pics we got as our camera's battery was running low.

We had a really good time - thanks Tammy & Shawn. 

Monday, November 1, 2010

Locked in my Heart

Over the past almost-eighteen months there have been so very many people who have left an everlasting footprint on our journey's path...some are family members, some are old friends, some are new friends, some are medical staff who have gone over and beyond what their "job" simply requires them to do to show that they truly care about Sam. All these people are so important to us - I have blogged about this before :) Besides the obvious blessing of having these people in our lives, is that we are able to tell them how special they are to us.

And then there are some who have unknowingly touched my heart :- About two weeks ago while whirlwinding through the shops, as has become the norm to accommodate Sam, I noticed a mom and a gran with what looked like about a seven-year old beautiful little girl with long brown hair tied in two pretty little bows, white leggings, a dark-pink top and super-rosy cheeks. Mom was looking slightly tense while she made an attempt to get her daughter to try on a pair of white shoes but nothing seemed out of the "norm" other than that the little girl seemed to have quite a generous helping of energy. A few minutes on while heading towards the till to pay, mom and daugther came whizzing past us helter-skelter through the aisles while in the midst of a terrible struggle to win control over the trolley which Jenna (the little girl) was trying excitedly to maneuver away from mom, completely caught up in her own little world totally oblivious to the commotion she was causing. I know her name was "Jenna" because as the couple flew past us, amongst appalled stares from other shoppers, I caught a glimpse of the desperately embarrassed look in mom's eyes while she cried in frustration "Jenna, I am going to smack you!" As we recovered from the near head-on collision that would have involved Chris and one Woollies trolley I turned around and noticed that the little girl was wearing a diaper and all of a sudden felt like I really had been hit by a trolley...or a lorry for that matter! And instantly my heart went out to mom and Jenna and I wanted to turn around and find them and tell mom it was all okay - not all the shoppers were rambling around wondering what kind of a mother she was for allowing her child to be so uncontrollable or mentally reaffirming what course of disciplinary action they would have bestowed upon poor Jenna...I wanted to tell her that we understood, but she was gone. Meg and I walked up and done the aisles while Chris stood in the queue but they had instantly disappeared.

Friday's story is a little more joyful...again, after zooting through the shop on Friday afternoon for wrapping paper for Mattie's and Payton's birthday pressies, we were walking up and down trying to assess which queue was the shortest. After Meg and I had finally resigned ourselves to the fact that the queue Chris was already in was indeed the shortest at that time, we had to "excuse me please" through the other shoppers which had since joined Chris' queue. After my last "excuse me please" to the couple directly behind Chris I went to stand in front of them with Sam on my arm. The woman's face instantly lit up in delight as she started laughing out loud then, after shoving her handbag into her husband's hands, snatched Sam from me while exclaiming to her hubby how cute Sam is, told him to look at Sam's hair, at how Sam was laughing at her....and so on and so on. Anyway, this went on literally the whole time until it was our time to pay, amidst amused shoppers and just before we turned to leave she asked how old Samuel was (yes - she already knew his name by then) and when I told her & after she commented about how tiny he is, I explained very briefly about RTS and she told us how that just made him even more special than he already is and then she told us that she has Turner's Syndrome and that she cannot have children. She gave both Sam and I a hug goodbye and as we turned to leave, exclaimed loudly to Sam that she loves him.  Once in the car getting ready to leave the parking lot I told an unconvinced Chris that we should go find them (amongst the three hundred odd cars parked there) and give them our contact details "just for sommer" (a South African term meaning "just because") but finally sanity prevailed (Hey, there's a first time for everything!) Still, deep down I wish I HAD stalked them down like a looney because the nine or ten minutes which that beautiful, amazing young woman spent in our lives has left an incredible impression and I really wanted her to know that. But now, all I can do is pray that, with the help of our awesome God, that she will one day become a mom.

There have been others, many others, whose compassion and empathy you can truly "feel" even with the briefest of meetings, as they will tell you how wonderful Sam is and wish us strength and grace. So while I know we've still to really do our "time" with people who will be more judgemental than understanding, I also know that in this particular part of the world, in this particular time there are so so many wonderful, caring people just wandering around waiting to make your day :-)