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)

Monday, January 31, 2011

Why so excited Mom?

So today I got my very first, real, "childhood injury" (and, for once, not caused by some or other medical procedure or surgery). It was sooooooooooooooo sore, I sobbed my precious little heart out so badly that I almost threw up all over Mom...which she woulda kinda deserved because I never imagined a mom could get so excited about seeing her baby get hurt! Sure, after like five minutes she eventually remembered poor lil' ol' me and managed to tear herself away from telling Brampies that I had just tried to stand up in my high chair, to try and comfort me...okay, maybe it was more like five SECONDS...or maybe just two, but was really sore. And whose silly idea was it anyway to put a tray on the high chair with an underneath sharp enough to graze a tiny little thigh? Or rather, was it Mom being silly enough not to strap me in, thinking that I am nowhere near trying out new, adventurous activities?

Talking about silly...and Mom....she insisted on taking a photo of my already-disappearing graze. It really is there if you look hard enough...and perhaps with the help of a microscope :)   

Ever seen the movie August Rush? It's an all-time favourite in this house, especially for my Mom, Luke and Meghan. Seeing as I love music so much  (although I have been banned from the keyboard because apparently trying to either play with my feet or completely kick the keyboard off the table is a problem around here) I thought I'd incorporate a bit of hand-clapping into the whole August Rush-style of playing. It went off very well - and I do so love jamming with my big brother.

Very serious stuff, this music-playing-business - no gap for smiling here :)

Sunday, January 30, 2011

Still settling in to 2011....

It is so hard to believe that we are already through the first month of 2011...the days are literally just whizzing by, perhaps because we are still trying to find our feet in our new routine. With Luke taking classes a fair distance from where we stay, Sam and I are spending on average about 2.5 hours a day in the car and that's on the "good" days, which are days without doctor's appointments, etc. From tomorrow morning though Luke is going to be braving the South African Transport System (Yikes!) and attempt travelling in by train. Our suburb is unfortunately not very central so there is only one train he can catch and one bus. He would need to be at the bus depot at 6:05am though, so we have opted to try the train first. He has never been on a train before and I can see he is really nervous about a) getting off at the wrong station and b) not being able to find his way to the college as he doesn't know the area very well. I am just holding thumbs that it all works out great as it would be a HUGE relief if all we had to worry about was fetching him in the afternoons. Brampies has been an incredible help (as always) and is eager to take or fetch Luke whenever he can...we are truly thankful to have the luxury of always being able to rely on him for help no matter what the inconvenience to himself. My three hooligans are blessed to have such a wonderful Grampa.

Speaking of doctor's appointments, we have as yet been unable to secure an appointment with Prof F but did manage an appointment with Dr S who was the paediatrician who oversaw Sam's care after the operation. He had a look at Sam's reflexes, which he said look great, as well as the scar and suggested we place Hypafix strips over the cut for a minimum of three months in order to aid the healing process, which we've done. He was quite amazed at the amount of aggressive teething going on in Sam's mouth, thanks to three of Sam's molar's battling to come out (one from more than three months ago). He suggested putting Sam on Vit D drops to help the body better absorb calcium and suggested I put him back on something for pain for a little while longer, at least in the evenings. Dr S also gave us the go ahead to dive back into therapy so that's what our little smurf has in store for him this week.

Sam's weight has unfortunately taken a bit of a dive as he has not been eating or drinking like he used to, so we have switched his formula to PediaSure, which conveniently comes in Vanilla and...Sam's fav....CHOCOLATE! So hopefully he'll manage to find some of that weight that's gone missing.

Perhaps the highlight over the past couple of days is that Sam has been sitting much better than he has for quite a while since the surgery, but more importantly, has been using that right leg more and more each day. In fact, we have spent a great deal of time over the past two days on one of Sam's favourite activities...walking! How wonderful is that? He still has some shaky moments...literally and figuratively when he either suddenly gets scared and almost clambers up to my arms himself or when he somehow loses his "swagger" and suddenly becomes completely unco-ordinated. Still, it is a huge improvement and very promising that there are definite signs of healing.

Below are some pics of his budding soccer-star potential as he demonstrates his great footwork....(note poor "Bot" lying utterly defeated, facedown on the ground after been wrestled into that position by our Conqeuror!)

On Thursday afternoon we had the wonderful opportunity to be completed sandwiched between two veld fires, on either side of our house and close to our neighbourhood - or so we thought due to the severity of the smoke, but with the gusty winds that were blowing the fire could really have been a fair distance away. Regardless, our house was covered in suffocating amounts of smoke with pieces of ash raining down in the garden. Needless to say, we all woke up on Friday with sore throats and irritated sinuses and smelling as if we'd just been to a braai/ the meal!

This is the normal view from our front door....

This is what it looked like on Thursday...

Just before all the smoke rolled in, Meghan noticed our neighbour wheeling a large tree stump into his garden - that's all the inspiration she needed to fashion a wild theory about where the smoke was really coming from and so spent most of the afternoon with her eyes glued to our neighbour's house expecting to see flames out of their front door at any given second.

Monday, January 24, 2011

I L.O.V.E. playtime

Hey Everyone. I so love having fun playing with my family...I really wish sometimes that it was playtime ALL day instead of only 95% of the day, but sometimes a kid just has to make sacrifices, you know?

Here's some pics of what we like to get up to.......

 So, Dad got me this very interesting starwars-sword-type-thing....I am not too certain how to use it....

 It doesn't taste ANYTHING like chocolate and definitely doesn't have any milk coming out of it,

 Mmmm...perhaps it's a foot measuring-type-thing...or bubblegum scraper-offerer?

 Just a random smiling me :)

 My most comfortable thumb-sucking position - although I it's more thumb-chewing than sucking

 Me and mom with one of my ever-present most-valuable little boats

 Me and Meg jamming out to some Barney on her "drumset" with the custom made drumsticks she made for us!

 Okay, Okay! So it's once with the right hand and twice with the left it!

 Me and Brampies totally destroying the brand new (rather pricey) Mickey Mouse Clubhouse book which, at the time of the photo, was only a couple of weeks old. So, Page 1 down.....nineteen more to go!

 Me and Dad doing some rough and tumbling Sam-style, but first, where can I put this lovely dollop of dribble first? Mmm..up there? Nah, it's too high.

 Whoa! Whoa, Dad! I can't be held responsible for where my dribble lets loose if you're going to tickle me like that.

 Waaaahaaaaa...and it's outa here!

 Okay, well...may as well get rid of the evidence in the meantime. Who needs wet wipes when you have Dad's hair? make me laugh, you silly billy goofball Daddy!

Saturday, January 22, 2011

That Sneaky Little Smurf

Our little conqueror woke up full of beans this morning :) It can sometimes take Sam a good hour or more from the time he starts stirring in the morning until when he eventually wakes up and this morning was no exception. Sometimes he's in the bed with us when he wakes up but last night he stayed the whole night in his cot. Hanging from the top of the cot is a little flower mobile (yes, I know, a bit "girly" for such a tough conquering smurf - but the flowers have lovely little smiley faces on them so that changes everything) and we don't need to peep over the side of the cot to see whether he's moving because whenever he does, the flowers start shaking like crazy. So this morning he stirred for a bit...then one little arm stuck straight up in the air for a minute....then he started "oooohhhhiiingggg" to the flowers while starting his morning smurfercising (kicking the sides of the cot). Chris and I lay watching the flowers, waiting for him to start moaning because we had not put him in the bed yet but instead the flowers suddenly went still and the "oohhhiiinnggg" also stopped. No way! What are the chances he would have fallen asleep again? Aaahhhmmm...NO CHANCE! But peeping over the side of cot was two of the most gorgeous blue eyes ever, watching us in utter bewilderment as to why he was still lying in his cot. We had such a good laugh - Sam has recently occasionally managed to find himself on all fours so it's great to see him gaining some strength in those little arms and shoulders.

But anyway, that was not the highlight of the day...although it was definitely an endearing start. I think I've mentioned before that Sam is not able to use both of his hands at the same time, he either uses one or the other which means that he can't do things like hold his little toy drum in one hand and bang it with the drumstick in the other, he can't hold his bottle because it's just too big to fit into that one tiny hand and, perhaps the most disappointing for me, he cannot clap his hands and, oh my gosh, I so L.O.V.E. it when a baby claps their precious little hands together and that's something I've really missed seeing Sam do.

Sam loves music, or even better, music video's of Barney or Hi-5, but especially Barney's Clapping Song. If I tell you that we watch Barney's Clapping Song a minimum...and this is an absolute minimum...of thirty times a day you would think I was exaggerating a little, but you'd be very wrong. Thank goodness we have three different versions of the same song (phew) which does help a little but that song has been our WAITING saving grace...waiting for x-rays, waiting in the doctor's rooms, waiting for Meghan at see, I cleverly recorded a copy onto my cellphone as well so wherever we go we always have Barney to resort to. Now as much as what Sam loves this song, all he ever really does is smile and occasionally do some flapping when its on, he's never made any kind of inclination towards trying to imitate what he's seeing. Today an amazing thing happened...yes, you've probably guessed by now - Sam clapped his hands...but that's still not the highlight, it's WHAT initiated his hand clapping. Chris was walking around the house carrying Sam and singing to him and all he SAID (without any visual encouragement as Sam was facing forward) was "Sammy, clap hands"....and? Sammy clapped hands!! You could have knocked us all over with a feather, I can only imagine what the neighbours were thinking about the excited squeals emanating from every open window and door and it didn't stop least every twenty minutes someone was asking Sam to "clap hands" just in case he'd managed to forget. Let me tell you, he's made up for a solid twenty-month's hand clapping in just one day.

Try as I might, I just couldn't capture the two little hands actually coming together

 Precious little boy :)

But wait, it doesn't end there. Later this evening we were sitting with Sam singing "If you're happy and you know it, clap your hands...." but we only do the first two verses to keep it simple (the second obviously being "...stomp your feet"). At first Sam didn't respond to the handclapping part but eventually started catching on, so Chris decided to skip the "stomp your feet" to focus just on the clapping, but Sam automatically lifted his foot to carry out the second action.

There is a slight low-note in that we found a little lump last night under skin at the top of Sam's cut and just can't imagine what it could's much wider than what it is long and is not attached to the scar at all, as it moves independantly. But there doesn't seem to be any other indication that something might be wrong so are trying not to focus on it too much until I can chat to Prof F about it on Monday (hopefully). And it does help still being deliriously happy after all Sam's little conquests today - they make the more "challenging" moments of the past couple of days seem oh-so insignificant.  

Friday, January 21, 2011

This-is-how-you-cope 101

Maybe it's the lack of sleep or the niggling concern that Sam is never going to regain those oh-so tiny milestones he'd managed to reap in before the surgery or just me wallowing in some delicious self-pity...who knows? Either way, I have been having a bad day or two and, as I would hate to have Sam's blog filled with an unacceptable amount of negativity, I try most of the time to just shake it off without going into too much detail...will instead occasionally post a poem/inspirational piece like "You're a Fighter" which is effectively me saying "Hey, not feeling too good today" and then trying to self-therapy myself out of it. Whatever works, right?

But whatever the cause, the fact is that I have been feeling not too chipper lately. And I say "chipper" with a smile because the moment I typed it I already started feeling heaps better. Maybe I should have just resorted to some good ol' ranting and venting days ago already! I read a book a while ago....after taking a while to read it in the first place....compiled by a psychologist who, in his opinion, outlines the processes we ideally work through to ultimately achieve acceptance and peace with parenting a different needs child (*I say different needs because I happened upon a particularly awful site where there is some rather brutal controversy about referring to our kids as differently abled as it allegedly incorrectly implies that they can achieve/function as "normal" kids but just in a different manner which is, apparently, misleading to caregivers, teachers, etc. There was one incredibly malicious statement which I refuse to post as I am sure it would break the heart of many of my fellow special needs moms but it really breaks MY heart to realise that in a society which, at face value, appears to be embracing the whole "everyone is equal" concept, there are still many who inwardly do not genuinely believe that - so very sad.) that I've made light work of destroying that "chipper" smile (mmmm....maybe it's my recent reading material that's responsible for little miz me????) So, in the book after each of the psychologist's steps are several parents' accounts of their own personal journey with a special needs kid, applicable to the relevant step and, although one or two of the stories gripped me (especially the one about a little girl who's sole disability was living with Sensory Integration Dysfunction Disorder and how, this disorder alone, can completely incapacitate one) I felt the majority of the stories were far too sugar-coated. I in no way dispute the fact that we are blessed to be given the opportunity to parent a child with special needs but, and this is going to sound so very morbid, sometimes I want to read about the hardships and disappointments and utter misery that other parents have gone through because it makes me feel less of a failure at learning to accept and adjust my hopes and dreams with my own little Sam. 

In all fairness, I did find several inspirational excerpts, but battled with the whole concept of having to follow a particular step-by-step pattern before finally accepting my son. I mean if I want to follow a denial-goofball-denial-anger-denial-grief-denial acceptance pattern as opposed to denial-anger-depression-acceptance-empowerment pattern, why can't I? So today I happened upon a preemie-forum (purely by accident this time) where a neonotologist had posted the, in his mind, debatable protocol of  resuscitating prem babies born at less than 32 weeks due to the high probability of CP. And from there the discussion snowballed as more and more special needs mom's joined in and the discussion, somehow, made a 180º into a heated argument about how to emotionally cope with a child with disabilities and how some contributors basically said, in order to maintain sanity and move forward, you HAVE to give up on all your hopes and dreams for that child and so it went on until it reached quite a comical level where the claws came out and the hair was raised on the back of many a mom!

And I thought can any one person tell another how they H.A.V.E. to cope with their shattered dreams and brokenhearted realisation that their baby will endure a life filled with more challenges, trials and suffering than most. Surely that is the ONE luxury we travel this journey in our own time, in our own way and with our own ideals. For a split second while reading all this hogwash I thought, maybe I really am setting us up for unnecessary disappointment by hanging on to all these unrealistic expectations. But you know what they say about split-second thoughts....well, I hope you do because I sure don't! At the end of the day...yes, a rather long day, but still a day filled with a precious little boy who still has enough joy in him to giggle uncontrollably with one look from his big demand a reaction by the mere flick of a secretly steal mom's chocolate literally out of her mouth....I still cling madly to each and every one of the hopes and dreams I have for my little conqueror smurf.

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 39ºC? 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

Wednesday, January 12, 2011

You're a fighter

Love Notes to a "special" parent......
Sometimes you have an actual person to battle against -- a specialist, a teacher, an administrator, an insensitive family member, a playground bully, your own stubborn child. Sometimes your opponent is less concrete -- a disease, a disability, a milestone that keeps moving away or a skill your child just can't seem to master. And sometimes you end up fighting against yourself -- subduing your fears, conquering your doubts, attacking your insecurities. Regardless of the foe, you're in it to win it. Surrender is not an option. You may negotiate and agree to a treaty or observe a ceasefire, or you may scorch the earth and take no prisoners, but you'll fight the good fight as long as there is any fight left in you -- and then you'll fight some more.

If you have reached the end of all the light that you know, and you are about to step into the darkness unknown, Faith can do one of two things...Either you will step onto solid ground or you will be taught to fly. (Unknown)

Monday, January 10, 2011


It was my dad's (aka Brampies) birthday on Sunday but, as always, Brampies was keen to keep it low-key so it was just us and Aunty Cammy and Uncle Damien having some tea and cake...and cake...and cake! But before we get to the Birthday Boy!

Sam and Dad messing around with his pirate patch he got in a Christmas pressie. If only Sam had two of those patches he could place one on each eye and might even be able to tolerate the sun.  

We are having such a hard time with Sam's right leg again that it's really becoming quite frustrating and, to be honest, saddening. It's a whole lot of backing-and-forthing between the leg basically being pretty useless and sometimes looking like its on the mend, before Sam reverts back to not wanting to stand on it again. The saddening part is that sometimes he looks like he's going to use it and then the foot just doubles over....BACKWARDS! His toes just fold completely under him. The frustrating part is that I don't think anyone is really taking my concerns seriously - firstly, when I say that Sam doesn't want to walk anymore, I get this amused kind of look as if to say "Whoa Crazy Mamma - you do know the kid just started sitting, right? We doubt he was walking!" But for those of you in the know and as I've mentioned before, Sam loved being on his feet (think I've even posted a pic or two of him "walking" before) so there has to be something significantly wrong for him to change that now. And, yes, I know we've done x-rays and examined him and found nothing - but do we really just stop looking? Even though the problem persists?

Hey, how did that rant slip in there? Moving swiftly we've always battled to find shoes that fit that gorgeous little left foot of Sam's. He had a lovely pair of Ug boots for Winter which had velcro on the sides and at the back so we could basically adjust them to fit each individual little foot, but other than those we've at least a handful of "hopeful's" lying in the cupboard. On Saturday we found a little pair of (fake obviously) crocs which also have velcro at the back and fairly wide soles and they actually fit so we promptly purchased them with the hope that, while wearing them, Sam could not bend his foot backwards. Unfortunately, having basically gone most of his life without shoes, Sam was not too chaffed with having them on his feet and immediately tried to scuff them off (boys will be boys!). But they still do look kinda cute!

 Meg had the amost AMAZING surprise on Saturday afternoon. Her best friend, Danielle, moved away to another city in June last year and Meg was devastated although they are quite cute and still write letters to each other. On Saturday afternoon I heard Brampies calling to Meg that Danielle was at the gate and I though "Yikes Dad! Howse about you put your specs on for a change." (A side-step for later) But much to Meg's delight, it really was Danielle. Unfortunately her mom had lost my number but amazingly remembered where we stay and, even more amazingly, had she arrived ten minutes later we would have missed them as we were on the way to the shops. Thankfully, Smurf was not having such a great day and we were battling to get going. The girls loved having a quick catch-up, although it took longer to get them to part ways than what the actual visit took because they kept accidentally disappearing and there was a good fifteen minutes of begging for more time.

Sam's one good night last week was just good night :) Although he has been going down with less fighting, he is back to thrashing around and tossing and turning most of the night. After a particularly bad night on Saturday, him and I decided to stay home from church on Sunday morning (because I had this crazy idea that he would sleep then?) Anyway, Sam's absolute favourite part about going to church is reading the bulletin, it's what keeps him occupied most of the time and someone always ensures that he has a copy (especially Uncle Augi). So, the first thing Sam spotted when Chris walked in the door was his bulletin and wasted no time in catching up on all the notices.......

Now, Sam has obviously been paying close attention (perhaps too close) to what his big brother and sister try to get up know, those classic scenes where the kids are lying upside down, half hanging off the couch while watching tv. Being the quick learner that he is, Sam has already mastered the upside down on Wilcon Bear position (Wilcon Bear being a gift from Uncle Willie aka William the Conqueror and Aunty Elspeth)......
 The hanging over Daddy's leg position.....

And the perched on Daddy's tummy position. Well, it all makes for good reading, doesn't it?

 On Sunday afternoon, after a serious lack of sleep, Sam had to borrow Aunty Cammy's shades just to keep the glare out a bit.

 And finally, a picture of the Birthday Boy with Luke, Meg and Sam!

Sam is trying to copy the whole spikey-fringe thing Luke has going on......not sure he's wearing it completely right though!

The side-step : Sam L.O.V.E.S. de-spectacling Brampies, with just the flick of a finger he can have those specs off in a nano-second. But Brampies does not always remember to put them back on and half an hour later you will bump into him, eyes all scrunched up, forehead wrinkled into a hectic frown...wondering round the house totally befuzzled as to why he can't see anything. In fact, he's even left the house WITHOUT them and ten minutes later called to say he can't make out any of the road signs, traffic lights, other cars, hills, etc. Okay, so I exaggerate a little....anyway, and we've had to drive his specs through to him.

Friday, January 7, 2011

What a Beautiful Day!

We really had such a lovely, calm, boring.....almost "normal" (with the exception of one throw-up) day today. What did we do today? Absolutely nothing - Sam and I didn't set foot off the property once, but it was still a good day. Sam's demeanour has kind of improved over the last two days...well, from the pain point of view at least, but the heat is really making his life (and then obviously ours too) quite difficult. He still fought to go to sleep last night and then did the usual second-round waking as well, but after that he didn't sleep too bad at all - basically slept from about 10:20pm right through to 7:22am (yes, I really do watch the minutes...any time from 4:00am I expect to hear that little voice next to me).

Anyhow this morning I put him down in his cot once he'd fallen asleep on my shoulder just after 10:00am and one hour and forty-five minutes later he was STILL asleep. I thought "Oh My Word" and quickly rushed to the computer table to grab my camera because a daytime nap THAT long most certainly warrants a blog post. But, alas, by the time I got back to the bedroom less than 15 seconds later, this is what I found......

I mean, seriously, FIFTEEN SECONDS! Plenty of time for Sam to be in full swing smurfercising!

Still, today's temperature was a fair amount lower than yesterday's...although not quite as low as the 27ºC several of the weather channels/stations predicted (remind me again why we can't tackle our weather guru's for false information....). It was still wonderful to be able to really play with Sam for a bit without him being so totally miz and uncomfortable (his wound is obviously starting to itch like crazy because he goes into a frenzy-type squirmey-wormey the second you lay him on his back, which isn't helped by the heat) and then (let's hope Murph doesn't hear this and throw me a curve ball tomorrow) Sam went to sleep without shedding a tear this evening! That is just so W.O.W. for us at the moment. Granted, I will probably be walking him again within the next half hour or so, but steps, one tear-free bedtime is good enough for me!

As for the rest of us, one more week left of school hols and Chris has already returned to work - wow, the time has really flown by. It still kinda feels like we're living parallel to the everyone else, having skipped out on the usual season's festivities but we received something so much more valuable than what you can put in fancy wrapping paper, decorate with a bow and put under the tree - a wonderfully safe and uncomplicated surgery for Sam. Okay, well I guess we could try the wrapping, bow and putting under the tree but I don't imagine our Smurf being TOO impressed with that. Oh yes, and the tree's been packed away already - perhaps next year.

The birds in our backyard are certainly having an extended festive season...they've pretty much devoured anything remotely edible that Chris has grown - plums, blackberries, tomatoes, avocado...they have absolutely NO diet restrictions here (dare I tell everyone that Chris put out an entire spongecake in the bird feeder for their "christmas lunch" - and then he wonders why they think we are a twenty-four hour, all-day buffet Backyard Cafe for birds???) Anyway, our grapevine in the front yard was growing so beautifully, so we were hoping that there was enough nourishment in the back for them to leave our grapes alone, but (again) alas....

From this.....
To this.....
 You know what they say about birds....give a hand and they'll take an arm (Don't they? Well, if they don't...they should).

So, with all the goings on with Sam's op, I forgot to reveal the much anticipated gifts Meghan had accumulated for us for Christmas. Well, I was quite pleased to find that the pressie consisted of no embarrassing hi-jacked pieces of clothing (seeing as pressies were opened in from of Aunty Cammy and Uncle Damian), just a few hi-jacked ornaments though (bless her heart) and then an absolutely precious poem she had written.......
 In case you cannot make the words out,

Mom your the best
mom in the world. I
know its hard to
look after Sam who
is RTS and two
children that do
not listen but that
just proves you can
do anything your super mom.
know body would want a better
mom then you.
Writen by Meghan

We love you Meg!