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, September 30, 2010

Catching Up

Wow, I can't believe it's been a whole week since I last updated Sam's blog...and since Sam's MRI results. The past seven day's have just flown by and we can't really say that we have anything to show for it, not in terms of "fun" or having done anything constructive in terms of arranging a follow-up appointment with a neurosurgeon for Sam. Well, not until today that is. I was referred to a prof of neurosurgery who, it seems to be, is quite outstanding and after first phoning the hospital from which he works and being told his first opening for us is on 27th October, I contacted him direct and he can now see us on 11th October which is such a HUGE relief. (We will not dwell on the fact that, if I had gotten my rearend into action a lot sooner, we would probably be seeing him this coming Monday already). So, four of the five-day school holidays is behind us already, with tomorrow being the last one. We at least managed an outing or two for the kids even though it was minor things like taking them out for supper last night and to Kidz Playzone this afternoon. Sam seems to be, slowly, improving his tolerance of shops and restaurants again and was quite easy to handle last night (which means that he didn't shriek and scream while either Chris or I were walking up and down the restaurant with him) but this afternoon's outing was a bit more taxing (which means he DID shriek and scream while either myself or his Aunty Debbie walked him up and down). It might be a wild guess, but there's a very small possibility that his low-tolerance might have been aggravated by the fact that by the time we went (round 2:30pm) he'd only had about twelve minutes sleep for the whole day. Unexpectedly, Sam fell asleep on the ten minute drive home (unexpected because Sam + car (usually) = shrieking and screaming, especially when the sun just happens to be shining it's merry self all over the place). I was sooooooo grateful that he was getting at least a tiny little nap which might see us through to bedtime without further S&S that I even sat in the car with him for about another ten or so minutes after we arrived home, before taking him into the house. Don't ya just LOVE kids that don't sleep during the day? Still, let me remind myself that, although he tosses and turns in his sleep as if he's wrestling some invisible smurf which inevitably wakes me up, he does still technically sleep a good ten/eleven hours at night. 

I might have mentioned it before on Sam's blog - I know I've sent an enquiry to the listserv already - regarding the fact that Sam does not seem able to use both his hands at the same time. Apart from the fact that it's quite bewildering to sit and watch him trying to, for instance, turn a toy over with that one little hand while the other hangs limply on his side, it also means that he cannot perform any tasks which would require two hands, like holding his bottle, clapping hands, etc. Well, for about the past week or so, at least once or twice a day, I sit face-to-face with Sam and sing songs which require hand clapping, like B-I-N-G-O and "If you're happy and you know it" and "Wheels-on-the-bus" (What? You didn't know that WOTB now has a hand-clapping verse...tsk tsk). And whenever there's any hand-clapping actions, I slowly take Sam's hands and clap them for him. As ol' Murphy would have it, Chris was sitting with him this evening doing the hand clapping thing (yes, for the first time) and what did our smurf do? Politely tried to clap his own hands once Chris had let go of them!!!! Oh.My.Word! I cannot tell you how exciting and so unbelievably cute it was...and there's more...he even repeated it a second time when Chris called me to come see! On Tuesday, while my dad was playing with Sam, singing some random song to him which might have started with "wheels" and ended with "round" (believe it or not we really do know one or two....or fifty....other kiddies songs, but he just really loves this one) and while singing "the Mommy's on the bus go ssshhhh ssshhhh" he put his finger on his lip to indicate "ssshhh". After repeating the song a good couple of times, as per the norm, when my dad sang this verse Sam took his own finger and put it on my dads' lips! Now, we don't know if it was just pure coincidence as Sam still has a mouth-touching/mining fetish...but we like to think of it as an intential, carefully considered action on Sam's behalf :-)

That's about it in the way of exciting news from our side. I purchased a book last Sunday called "A Different Kind of Perfect - Writings by Parents on Raising a Child with Special Needs" but have so far only made it through the first three pages of the Preface! I am hoping to have completed reading it by the time my special needs "child" is 30!

In closing, in a recent post I briefly mentioned my three cousins Gavin, Caron and Amy. Gav and I were chatting via e-mail this evening about the impact his older brother (Julian) and sister (Vanessa) had on his childhood and the way in which he dealt with his disability (moebuis syndrome). I find Gav's account of some of the memories quite hilarious, but this could possibly be because I was there either experiencing some of these wonderful moments firsthand or experiencing the gobsmacked reactions of my mom and the other family members when hearing about them. I invite you to take a look at the following link http://www.manyfacesofmoebiussyndrome.com/ to first get some background info on the syndrome which will help you understand the humour behind all the "smile" remarks and then on the lefthand side, under the heading "Gavin, updated..." you will find a touching rendering by Gavin on dealing with his disability, as well as his Mom's equally tender account of, especially, the first few years of Gavin's childhood. A quick excerpt from our e-mail....


I'm really lucky to have grown-up in ignorance about it as I see now that I haven't structured my life around it. The first time that I realised I couldn't smile was when Vanessa - in true Vanessa fashion! - was taking a photo of me out on the front lawn. "Hey dummy, stop pulling faces!" She said after I had struck a pose. "But I'm not pulling faces." I protested, "I'm smiling." Vanessa looked at me quizzically. "Don't be stupid, you can't smile!" That's sisterly love for you!  I went into the bathroom and glancing in the mirror gave what I thought to be the biggest, toothiest, ear to ear grin I could muster - and then realised Vanessa had been right! : )

Thursday, September 23, 2010

Mission MRI Complete...at loooooooong last

It really was a case of "third time lucky" for us, after unsuccessfully attempting two previous MRI's (all Sam's doing I'm afraid...or rather, that of the germs which insistently invade his little body), Sam was finally scanned yesterday afternoon just before 4:00pm. It was touch and go for a few hours as our time slot first changed from 08:00am to 09:00am and then from 09:00am to 3:00pm as the MRI unit battled with a staff shortage but we eventually made it in at about 3:45pm, although at one stage it looked like they were going to move us again. We are truly blessed though to have a wonderful friend, Adele, who also happens to work at the MRI unit and who went out of her way to make sure Sam was done. Sam did really well considering by that time he had been without milk or food since 8:45am and really only started complaining round about 2:00pm. Thankfully the anaesthetist we had especially requested come out from Red Cross Childrens' Hospital to do Sam's anaesthetic was so accommodating and understanding and even though it meant a great deal of his afternoon was wasted, he stayed until the MRI unit were ready for us.

The actual scanning and anaesthetics went really well and its an awesome relief to know that Sam does not, at this point, seem to have any sensitivities to anaesthetic as, considering the MRI results, there's the possibility of another surgery in the near future - Sam's scan came back "highly suggestive of a tethered cord due to the abnormally low-lying conus at the level of L3 inferior endplate" (huh?). The second I heard "low-lying" instead of something implying, undoubtedly, that Sam has a tethered spinal cord my mind went into overdrive and I excitedly explained to Dr B that there had recently been loads of e-mails on the RTS listserv about MRI's and TSC and that, if I remember correctly, the crunch of it was that a low-lying cord is not necessarily a tethered one. Well, apparently (Surprise! Surprise!), I had NOT remembered correctly because as soon as we got our exhausted, yet-again-traumatised, dehydrated and starving child settled enough to fall asleep last night I went through all my saved mails as well as the RTS Blue Book's info and what the majority of the correspondence actually says is that in children with RTS, a low-lying cord is usually indicative of a TSC and treated so, ie. surgery.

So, our plan of action is to meet with at least two neurosurgeons so that we can make a completely informed decision about whether we opt for surgery or choose to wait it out a little while longer, whichever one of those decisions is in Samuel's best interest. I must say that I was really quite surprised at how unsettled he was yesterday in the ward. I mean, let's not pretend, Sam has a definite aversion to any person whose title begins with "Dr" or "Sr" or any place where these folk can be found...but poor Sister Marleen (she's the one in whose mouth Sam was merrily mining away when he was last in for kidney & chest infection) couldn't even put his nameband on his wrist - he became totally hysterical. So, I cannot imagine how well another hospital stay is going to go down with our young Smurf, especially if it involves something as horribly invasive as neuro-surgery. For now, until we have met with the neurosurgeons, we just pray...and pray...and pray. For what? That the MRI report was, somehow, incorrect? That the cord rectifies itself? No, although any or both of those would be wonderful, just that we can somehow avoid surgery for now without it having any kind of nasty repercussion for Sam in the way of pain/discomfort or further neurological delays.

Want to hear something quite funny though? I can't say I really gave the actual MRI result much thought through this whole process - my main source of anxiety was more the anaesthetic than the actual reason for Sam NEEDING the anaesthetic...it's like I never accepted the possibility that a TSC could be the case, or more profoundly, that Sam could have such an unquestionable "sign" that he has RTS. It's not the first time its happened and the first incident is just WAY more amusing. A few weeks ago, actually shortly after the RTS conference at the end of July, I was reading through some of the listserv's mail and it turned out many of our RTS sweeties have an indentation-type mark on their ears which many of us parents thought were unique to our own children until one person mentioned it (I think at the actual conference...I was just about to say If I remember correctly, but will rather not go there) and we all excitedly remarked how our sweeties also had it! Just after sending my "Sam has it too" e-mail I kind of slumped back in my chair and thought...well now it's unquestionable....Sam DEFINITELY has RTS! It wasn't the respiratory problems, particular facial features, feeding problems, high palate, huge red birthmark on his forehead, neurological delays or tiny stature...it wasn't the loads of hair, bowel problems, strabismus, severe reflux or extraordinarily angulated thumbs that convinced me...IT WAS THOSE DARN EAR INDENTATIONS! At least now I have a more "acceptable" account of the defining moment of our journey wherein I completely and undeniably accepted that I have a "differently abled" smurf!

Monday, September 20, 2010

What's Brewing?

We are not quite certain what's up with our little Smurf at the moment but, for the greater part, he appears to be in some kind of discomfort or possibly even pain...or at the very least seems really unsettled, almost all of the time. It's been going on for quite some time now and there are so many possible causes from the rather aggressive way he is teething to him still suffering some kind of post-hospitalisation trauma from his recent kidney infection and pneumonia, which I shouldn't completely rule out as per Sam's NDT. His always-ready joyful laugh is becoming quite a rare occasion now and slowly being replaced by his regular crying and the way he violently whips himself back. In fact, the way he throws himself back is probably at the worst point its ever been...where it sometimes becomes almost impossible to handle him, as the action becomes more and more forceful. We had an incident last week where I actually almost dropped him because as I leaned over to place him in his then-swing-now-feeding chair with one hand at the back of his neck and the other supporting his behind, he arched that little back of his with such power that his bum slipped out of my hand and if it wasn't for me managing to grasp one little ankle, he would have landed up on the floor. It is so frustrating, not only because it makes some of our days pretty challenging but it's also affecting Sam's development as well because trying to get him into a sitting position now is almost impossible and even attempting a crawling position is an absolute no-no! Most importantly though, it breaks my heart to think that there might be something causing him such discomfort without me being able to determine what the source is and making it better for him.

The kidney infection gave me quite a scare because it was most probably caused by an untreated bladder infection which is really quite horrible because, as someone who has suffered countless bladder infections and related problems, the idea that Sammy had to endure this kind of pain for so long is unbearable. Even more scary, if he hadn't landed up in hospital with the kidney infection we wouldn't have known he had the pneumonia which didn't present itself when his docs listenend to Sam's chest. I decided to buy my own urine test kit and check Sam's urine every couple of days and even the most recent test, being today, showed no indication of an infection so I am truly stumped.

Thankfully Sam's MRI to rule out a tethered spinal cord has been re-scheduled for this coming Wednesday at 09:00am so, although I am still trying to figure out how we are going to manage the nil per mouth instruction when normally by that time every day Sam's already had two bottles AND a large bowl of porridge, I am quite keen to get it over with if a TSC could possibly be the cause of his misery.

Sam has also begun seeing a speech therapist again as of last Wednesday, this time for actual communication and not feeding purposes although the fact that swallowing is still not a reflex that comes naturally to him is still quite bewildering sometimes. Sam has showed some encouraging signs in that he recognises several words like "kitty, Max, fan (he still LOVES ceiling fans), Bot" (the robot which has been passed down from Luke to Meg and now Sam) and even differentiates between "baba" and "babies" - we have a collage of photo's on one wall with pictures of Meg and Luke as babies which we refer to as "the babies" and then on another wall a single pic of Meg as a baby which we refer to as "baba Meghan" and whichever one you say to him, he points with that gorgeous little finger to the correct one. BTW, there used to be a "baba Luke" as well until, with Brampa's help, baba Sam yanked it off the wall leaving it smashed into pieces on the floor! Also the fact that he points that little finger as a means of communicating what he wants or where he wants to go is also quite a big positive. So we were scheduled for another session this coming Wednesday, but obviously the MRI takes preference so will have to postpone till next week sometime.

The only thing that remains a no-fail remedy for getting Smurf's spirits up is being outside...he absolutely ADORES it, light-sensitivity and all. The second you start making the slightest move towards any door which leads outside, he becomes almost hysterical with excitement. We tentatively planned to take the kids out for the day on Sunday as, according to the always-accurate weather predictions, we were to have a fairly lovely weekend. For some reason I suggested to Chris on the spur of the moment that we do it on Saturday instead, which turned out to be an unanticipated "save" as Sunday's weather turned out thoroughly miserable with rain, gusty winds and the works. We decided to take the girls to Bugzworld which is fairly close to home as this was going to be Sam's very first proper outing to somewhere other than a doctor's room or therapy session of some sort or increasingly-occasional shop and we were quite nervous of the potentially disastrous turn the outing could take. However, we needn't have worried for even a milli-second as Sammy enjoyed every minute of the afternoon and was quite content to be walked around on my arm just taking in all the different sounds and scenes, as there wasn't really many activities for him, and even managed to fall asleep mid-swing on my lap for a fairly decent (for Sam) twenty-minute nap. It was literally only as we were walking towards the gate to leave that he started whinging a bit, so well done Sam for making it such a pleasant afternoon!








These last two pics were actually taken a few weeks ago already of Sam enjoying his very first ice-cream....or rather, enjoying MY ice-cream (chocolate of course). The oddest thing about him having the ice-cream, other than the incredibly cute choco-mouth it gave Sam, was that after each and every mouthful he neatly closed his little mouth and swallowed whereas when eating normal food he can sit there for a full 60 seconds with the food literally falling out the mouth while I try frantically to stimulate his chin to get him to close his mouth and swallow.



Sunday, September 19, 2010

UNDERSTANDING SUFFERING.....FROM A CHILD'S POINT OF VIEW

On Thursday I was told a story by a beautiful young woman who, up until then, I was casually acquainted with but who I now call friend. M opened up her heart to me and told me about the precious baby girl she lost as a result of Trisomy 13/Patau Syndrome. I knew very little, if anything, about these three devastating disorders/syndromes (Trisomy 13, 15 and 18) and did not even know M during this unbelievably sad time, but her pain still seems so fresh and raw. She is such an incredibly brave Mommy, finding the strength to carry on taking care of her two older children who desperately require her love and care. M's story though has a lovely ending, in the eyes of a precious little boy called Rian who is just weeks younger than our Smurf.

On Friday I heard from a dear friend and endless source of support that her beautiful family is, at this very moment, treading frantically in a pool of unknown as they wait, with unfaultering faith and trust, to find out whether their little angel is going to be okay.

This evening, while chatting to Meg, I opened up Sam's blog to type a post (the details of which I can truthfully not remember) and one of the first post's I saw on the right-hand side was from Jessica's blog about an amazing little girl called Mallorie who only yesterday succumbed to pneumonia, after an extremely courageous and seemingly endless battle with her health. Mallorie had also been diagnosed with the very disorder I had only three days ago learnt about (http://www.malmalrose.blogspot.com).

Of course, Meghan aka "Eagle-Eye" caught the very first line of the blog instantly and immediately wanted to know if Mallorie had RTS. She then commented that Sam has also had pneumonia and, being the ever-anxious little girl that some of you know, you could see that little mind of hers kick into "worry mode" as it calculated that pneumonia + child = death! I carefully explained to her that firstly most children that get pneumonia recover extremely well but that sometimes, like with "special needs" children or children with cancer, AIDS, etc, their bodies have had to endure so many illnesses and conditions that their immune systems are just too weak to help heal their bodies. She still looked panic-stricken so then told her that little Mallorie did not have RTS...and that seemed to reassure her, whether rightfully so or not.

Her next inevitable question was (as she has asked me this before) "Why do children get RTS and cancer and other sicknesses?" I have obviously not completely satisfied her mind with my previous answers, but its a remarkably difficult concept to explain to a child. I ran through pretty much the same explanation I gave her the last time, which was that God in no way creates children with special needs/cancer/illness, etc but that, we believe, the Devil will try anything to turn as many people away from God as he can, by doing whatever he can, and that sometimes God allows these things to happen so that we can turn to Him and pray more and become closer to Him. Also, sometimes, not only do we become closer to God, but we learn how to comfort others and help others who are going through the same thing as us. But, alas, even before I finished, I could see the same old expression that said that that just isn't a good enough reason in her mind. So, if anyone out there has any suggestions/advice on how they have explained this to their children, I would be ever so grateful. I don't want her to start losing her fresh, untainted adoration for her God and so, eagerly look for the right words to answer her question.

The question of why God allows suffering is surely one of the most asked questions in the Christian community...I know I've asked it a good two or three (million) times! Just this morning after church ("church" still meaning me and Sam patrolling the foyer throughout the duration of the service) I said to someone that I honestly don't know how those who have no faith to fall back on, regardless of how fragile it might be, endure their own challenges and tribulations. And, speaking from personal experience, I have tried "going it alone" and it is simply impossible. Make no mistake, having at least a smidge of faith and trust in Him, certainly does not make one's pain or hardships any less formidable...it does, however, prevent it from consuming you as there is an unexplainable and, often, unexpected strength that helps you bear your cross.

Sunday, September 12, 2010

MORAL INTELLIGENCE

On several occasions, over the past few months, I have either read in a blog or e-mail another mom or dad's account of a time when they have felt the sometimes insensitive, other times just plain cruel, disdain of another parent in whatever particular situation they were in, whether it be a shop, restaurant, or wherever. I have always wondered how I would feel when this, seemingly inevitable, experience would happen to us. About three months we came as close to this as I thought we could when unexpectedly running into a "friend" who, for whatever unknown reason, I have not heard from for quite some time. I do know that this friend knows about Sam's condition as we have a mutual friend who i am still occasionally in contact with. When her daughter first spotted Meghan getting out of the car she shouted hysterically "Mom! Mom! It's Meghan." And so-called friend pretended that she was being blinded by the sun and could not see or, apparently, hear what her daughter was saying (an interesting fact I learnt that day as I did not know you could be deafened by the BLINDING sun as well). As chance would have it, we were headed for the same place and so I approached her to greet and ask how she's been, with drooling, shrieking Sam hanging "pouch-style" over my arm, in front of me. Not once during the all of four minute conversation did she acknowledge or even look at Sam, but that could've been due to the excruciating pain she seemed to be experiencing while speaking with me. Yes, it hurt a little, but not enough for me to dwell on for more than a day.

On Tuesday afternoon while strolling with Sam in-arm towards the school gate to collect Meghan, a car stopped alongside me and I heard a friendly "Hallo" from a fellow-mom who also knows about Sam and has always been really kind and interested to hear how he is doing, etc. Her oldest child was in Meghan's class last year. We had just barely begun the conversation when her youngest, about six/seven years old, sitting in the seat next to hear suddenly asked her (while squinting at Sam) "Why does that baby look like a monkey". She replied, "Shame, that's not nice." To which he defended his statement with "But there's something wrong with his eye". Interesting new fact No. 2 - I did not know that monkey's have one eye which sometimes appears much smaller than the other...it's been an educational couple of months I tell you.

I can't say I have ever really thought about what I should say or do if a situation like this did arise - but did not think I would react so utterly poorly, which was that I first stood there looking at young boy, mouth open, eyebrows twisted with the incredible effort of trying to think of something....ANYTHING...to say. Saw Mom's mouth moving and vaguely heard her trying to change topic by asking something else, but only replied "Anyway, have to go now" and turned and walked away. I do so understand that obviously this little boy was not intentionally trying to be rude or hurtful (at least I hope not) or that I could not have expected his mom to turn around and lambast him for a situation which he has never been prepared to deal with but, as nice as what I have always thought his mom to be, I do feel that her reaction (or lack thereof) did not teach her son anything, therefore better preparing him should he one day face a similar situation. Now, I am sure many would challenge that he is too young to "know any better" but I would then beg to differ. Dr Michele Borba (author of Building Moral Intelligence : The Seven Essential Virtues that teach kids to do the Right Thing) says that most parents believe that you can't begin teaching virtues to kids until they are at least in Grade School, but that in fact this should be done right from birth when children are amazingly and intuitively responsive to being "good". Borba also says that parents have a choice which virtues to teach their kids and feels that there are three CRITICAL virtues we need to teach our children to ensure that they become caring and compassionate people, the very first virtue being EMPATHY! The other two, conscience and self-control, are the three virtues which make up the moral core. (Amusingly the following question was quoted as a means of explaining empathy "How do you think this makes Sam feel?".) My nine-year old daughter took it upon herself earlier on this year to find the "right" words to explain to her Grade 3 class what RTS and "special needs" are - I only found out from her teacher a fair while after. Now surely a woman more than four times her age could have thought of something?

Perhaps I have set too high a standard for what kind of reaction I expect...for good reason. I did not really know till I was probably almost in high school what "special needs" was. Digressing a little, quickly - I grew up with two very close cousins who were both born differently abled : my cousin, Gavin, who has Moebius Syndrome (http://www.moebiussyndrome.com) and my cousin, Caron, who has Phenylketonuria (http://www.pkunews.org) and later, just before I turned eighteen, a third cousin, Amy, born with Down's Syndrome (Caron's little sister). We spent heaps of time together then, at the very least, almost every Sunday was spent as a family...and I don't remember anything else other than two smiling, light-hearted, life-loving, child-adoring and good-humoured aunts who made mothering a child/children with special needs look no more challenging than being a mother to any one of us, in fact, they actually made it look like a breeze and only since Sam's birth have I realised how very much I admire both of them for being such wonderful moms - they made caring for differently abled children seem effortless and have most certainly, unawares, become wonderful examples to me.

And, speaking of examples, back to the point (if there actually is still one hidden in all my mumble jumble). I remember going to a shopping centre with my Aunt Alvie and cousin, Gavin, one afternoon when I was roughly about eleven/twelve years old. I remember a boy of roughly the same age as us pointing and making a remark (which always brough an instant rush of anger towards the offender and, just as quickly, a feeling of protectiveness towards Gav. In fact, my sister and I would instantly launch our own attack with our how-dare-you, shame-on-you, now-you-deal-with-us glare). Anyhoo, this boy's mom had the decency to pretend to reprimand the boy by turning him away and leaning over him to, supposedly, give him a talking to but out of the corner of her eye I actually caught having a good old gawk herself. Now, if only I had been just a little bit taller then....(okay, so that same remark would probably apply today as well)...! Thankfully, even before Sam was just a twinkle in his Mommy's eye, I tried to instill in both Meghan and Luke the importance of never making another person, regardless of their physical appearance or behaviour, feel that they are an object to be stared at and/or pointed at. If they do have something they would like to say or ask me about, they can do it in the privacy of either our car or home or whichever surrounding would enable them to find the right words without having a hurtful effect on other human being. Setting an example for our children is one thing...but much like an exam paper, just because you set it doesn't mean you write it...we need to BE the example with our own actions.

Saturday, September 4, 2010

NAILED TO A CROSS - AN AWESOME LESSON

I thought of starting this post off with "What a week we've had...." but we've done that one already, so how about "What a MONTH we've had...." or rather "What TWO MONTHS we've had..." but does it really matter? Yeah, yeah...we've been through a rough patch again...who hasn't, right? But, as debilitating and (seemingly) impossible as what the challenges might have been, it's really what you take away from it that counts!

So, let's start this one with.....WHAT AN AWESOME LESSON I LEARNT RECENTLY!

As far as what my memory serves me (which isn't saying much these days -but let's pretend I can still occasionally remember an important fact or two like my name, telephone number, how many kids I have....two kids, right? Or is that four? Three? Okay, Okay...I know it's somewhere between two and five...although with all that quarelling it could well be TEN!) Anyway, where was I.....as far as what my memory serves me (hehehe) I don't remember a time since Sam's birth when I truly felt hopeless...defeated...and if any situation was going to make you feel that way, surely having a child with more challenging needs would have done it? Alas, this has not been the case with our family and although I feel it best not to go into any detail, we were faced with a situation which left me with those very feelings....hopeless....defeated.....and only now that the cause has eased off a little (temporary though it might be) and I have found myself in a stronger state of mind, can I actually reflect on it although now with a shadow of shame and guilt.

The "situation" (I have to apologise - you must be dying to know the details...maybe one day) has played itself out over a long period of time, but recently came to a pinnacle point. On it's own it would have been a struggle worthy of a World War title....but more devastating is that the major player involved goes by the label of Christian. The situation left me feeling absolutely, completely powerless...isn't that how you would feel if the power to protect your baby was taken away from you? I am not too self-righteous to admit there have been times when I have asked why God does not seem to hear our prayers...our pleas for help...but this was just on a completely different level. Whereas, as heartbreaking as it sometimes is, I do believe that Samuel is every inch the tiny person God meant for him to be in order for him to fulfill a glorious purpose here on Earth but I could just not find any possible reason for why He would allow this kind of tribulation.

Selwyn Hughes says that Christians sometimes nail themselves to a cross and how accurate he is...we chastise ourselves for something, long past the Lord's ultimate gift of forgiveness...and not only does this distance us from Him, but serves no purpose as we self-inflict a sentence already borne in sacrifice by His own Son. Well just as I was wondering if it isn't better....no, EASIER....to rather surrender my own Christian identity as opposed to having to fight Satan for the right to keep it, I realised a fundamental error I had made....failing to give up control of the situation because I believed that He had done just that. And then I doubted whether I still deserved His Grace after having committed a fundamental error in faith. Over those couple of days I cannot tell you how many "coincidental messages" I received reminding me that He NEVER leaves us, even though our troubles sometimes cloud our ability to see Him there and I have to express how vital it is to have friends and a fellowship-family whose beliefs mirror your own.

So...the "situation" is still not yet resolved and will take some time to be so, if ever...but our Smurf is FINALLY on the mend which is such an AMAZING blessing to be thankful for. On top of everything else (as if a kidney infection is not enough) Sam decided to bring a little gastro home from the hospital, which was promptly shared with first myself, then Luke and finally on Thursday afternoon with Meghan. And how is this for a "The Joys of Being a Mom" moment...Luke and Meg were both flatout for at least twenty-four hours with the bug, both nauseous and suffering excruciating stomach cramps combined with a delightful fever and complete loss of appetite, much like the symptoms Sam and I had. On Friday afternoon Luke asked me "Why didn't you have to stay in bed when you had the bug?" Like..you have GOT to be kidding! Uuuhhmmmm, let's see Luke...I was contemplating flopping down onto the bed when the cramps and nauseau made it almost impossible to stand up straight, but then I thought of the unwashed baby bottles, unmade Nestargel, unwearably filthy clothes, unmade dinner, etc etc and suddenly the wave of jealousy at who was going to steal my daily pleasure of carrying out these chores completely washed over the wave of nauseau!

Back to our little Smurf who - when the tummy bug first settled in, went off his food and then eventually (for a whole day) went off his milk - finally has some sign of his appetite returning. I tested his urine yesterday and it was completely clear, which is also wonderful. His nose is still a little snotty and congested but hopefully that will clear soon too. The teething is just another issue on its own, although I fear I might be to blame. I distinctly remember a few posts ago saying wouldn't it be great if Sam cut all his teeth in three's! Boy, this would be one of those times when my short-term memory loss wouldn't be a bad thing. Well it looks like Sam's been reading his own blog because...low and behold...that's exactly what's happening again! The little smurf's gums are completely red and swollen, seemingly everywhere. And not that he ever really LOVED going to the shops, but he has developed an utter aversion to being in a shop...which usually plays out in the most hysterical screaming fit. But he remains so completely and heartwarmingly adorable with his little sing-song voice, no-longer-toothless smile and ever-searching fingers for the closest, unsuspecting mouth.

Luke's rendition of Sammy Smurf




Sam's unrelentless attempts to get his hand in someone...ANYONE'S....mouth is not just reserved for friends or family, even the nurses at the hospital are not safe from those little prying fingers (and we wonder how he landed up with a tummy bug in a hospital after exercising such wonderfully hygenic practices).