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)

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 hey...baby 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!
Posted by at
Labels: ,

4 comments:

  1. EssieJanuary 8, 2011 at 1:00 AM

    Oh wow Nicky, that poem is the best Christmas prezzie ever! And Meghan is such a beautiful little girl.

    ReplyDelete
  2. NickyJanuary 8, 2011 at 9:06 AM

    Thanks Essie :)

    ReplyDelete
  3. CindyJanuary 8, 2011 at 8:49 PM

    I don't think anyone could say it better than Meg!

    ReplyDelete
  4. JacquiJanuary 8, 2011 at 9:20 PM

    What good news about Smurf. I so hope it continues - here is to more long day sleeps, and many more tearless goodnights.

    And Meg's poem is just so beautiful and precious - must have melted your heart. Thanks for sharing it.

    ReplyDelete

Subscribe to: Post Comments (Atom)