SAM...MORE THAN A CONQUEROR: Smurf Wars

Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror

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)

Wednesday, May 9, 2012

Smurf Wars

Things have been somewhat hairy in Smurfville over the last few days. Sam seemed a littly more "fragile" than usual at the beginning of last week but I put it all down to his teething...not least supported by the fact that he sports two farely red and "thoroughly gnawed" thumbs lately...because them being angulated doesn't attract enough attention? By Wednesday there was definitely something else bugging Sam when we were back to the clinginess, mostly sleepless nights and nocturnal thrashing that Sam is prone to when something is ailing him. Even if I'd had the time to blog, the posts would have looked something like this :

Wednesday, 2nd May

HELP?

Thursday, 3rd May

HELP!

Friday, 4th May

H E L P !!!!

The fourth was definitely not with us on Friday <<cringe>> Sorry, couldn't resist...especially because I only found out round 6pm why everyone was "May the Fourth be with you"ing all day.

In actual fact, when Chris let me know he was on his way home on Friday evening I sent him a text saying "Are you sure you don't want to rethink that?" No point in both of us going down, right? So run while you can my friend! By Friday evening Sam's eyes were looking really puffy and his cheeks all flushed and somewhat swollen. Mmmm...I told Chris I was quite convinced Sam had sinusitis - had a little experience with that one myself you see, so I could almost "feel" how Sam "looked".

The weekend was pretty much more of the same so come Monday, off we headed to the paediatrician who, after a thorough examination and usual vomitting that comes with Sam being weighed, said "Mmmm....Sam has a rather nasty sinusitis!" So another ten day course of antibiotics for Sam...the only antibiotic left that we haven't exhausted during the last three months. Sam seemed to have a much more comfortable night on Monday, but last night we were back to the smurfrobatics (nighttime thrashing), now accompanied by additional coughing coming from Meghan's bedroom. Sigh!

Ironically, Sam had his best ever physio session last Wednesday...all thanks to his iPad. It had worked for his previous OT session, so I suggested to Heidi we give it a try for physio as well and, with the exception of one or two moans from Sam when Heidi tried to push him a little, Sam did really well...as long as I kept the apps flowing. So being able to use Sam's iPad to entice/distract Sam with OT and PT respectively, has proven to be quite the added bonus. However, at this point, we are focusing predominantly on speech prompts and signing for speech therapy where bringing the iPad in would not really be beneficial. Usually this would not be a problem as Sam is quite relaxed and comfortable with speech therapy, but on Thursday Sam obviously felt he had to give us at least some therapy resistance for the week and so moaned and protested throughout the entire session. With physio having gone quite well again this morning, let's hope tomorrow's speech session is not going to follow last week's pattern.

That's roughly about where we are at the moment. Sam's Granny is coming for a visit from tomorrow until Monday, which is something to look forward to and other than having to go do a bit of a hunt for a birthday pressie for Tuesday, we have nothing else really exciting planned. Yes! Sam is three years old on Tuesday. Almost hard to believe...as is the fact that he now weighs a solid 13kg's (although I have no trouble convincing my aching arms and neck that he weighs that much). Exactly three years ago I was lying in hospital praying that I would carry Sam to 34 weeks, but that just didn't seem to be the plan for us :)

Giving a lighthearted account of how things have been over the last week or so is quite refreshing and therapeutic...but this time last week lightheartedness was the last thing I had running through me. Disheartened would be far more accurate. We've dealt with it before and will no doubt deal with it again...aggressiveness. Just after his surgery in August, Sam became extremely aggressive and lashed out mostly at me and, with obviously feeling really crummy last week and not being able to communicate it to anyone, Sam resorted to some pretty aggressive (and mostly well-aimed) hitting and kicking. While I know not to take it as a personal attack, it doesn't always soften the blow to one's spirit. It's really only the second time we've dealt with this challenge and by Monday Sam was not only back to his usual affectionate self, but even seemed to be trying to make up for his behaviour last week by dishing out even more love and hugs than usual. When I allow my mind to delve into that dark place, I have to admit that it is something that I find quite frightening. I know, from occasional posts to the listserv or FB group, that behavioural issues as these RTS sweeties (and many special needs kids I would presume) grow older are not uncommon. Almost makes you wish there was a way to prepare yourself for it - but that would just be too easy, now wouldn't it? Still, perhaps trying on Meg's goalie kit might not be entirely unfruitful ;)