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, December 1, 2010

Me and my friend, Rian!

Hey Everyone! How are you all doing? I am doing great at the moment, it's been just over three months since I've had any illness which is like a super record for me. And there are so many nice things that come with being healthy like being able to have regular playdates with my friend, Rian. In the beginning I thought the playdates were more for Mom's and Aunty Mandie's benefit so that the two of them could get together and chatter away so I decided I needed to put more effort into it and take control of the situation by showing how much I enjoy spending time with Rian so the second he came into the room yesterday I flashed him a great big smile just to let him know how happy I am that we are friends.

Mom and Aunty Mandie tried to take some pics of us yesterday but Rian loves biting his nails, so I was trying to help bring the picture together by holding Rian's arm.


Rian thought it was quite funny!


And physio's being going well too, I hardly ever cry anymore, much to Mom's and Aunty Heidi's relief.



On Sunday, Ouma and Oupa came to visit from Stilbaai. They brought early Christmas presents for everyone, which are nestled safely under the Christmas tree next to the, now, three presents Meghan has been making for everyone. But my pressie was a great big bag of play balls so Mom thought it would be okay for me to have a go at them now already. I am slowly getting used to them, in the beginning they freaked me out a little but it does help when Mom and Meghan act like goofballs trying to juggle the balls and throwing them around in an effort to make me laugh. They are like SOOOOO embarrassing.

Bathtime is so much more fun at the moment now that I can sit. A few months ago Mom received a gift of sponges from a workshop she attended at Aunty Grietjie's and at first I was quite content to have them sitting on the side of the bath with me or trying to grab them as they float around in the water but recently I found that they are quite nice to chew on as well.

So that's what I have been getting up to lately. I am quite loving my food at the moment and now drink 180mls of milk at a time and finish a whole jar of Stage 2 baby food at every meal - okay, it is the small jar, but it still counts. Mom keeps bugging me with trying to give me all sorts of juice or flavoured water, etc to drink now that the days are getting warmer and warmer, but she just doesn't get that I don't like the stuff - as if my gagging and whinging isn't enough evidence. Thankfully we've had almost a week of no juice-drinking attempts - phew! And I do so love being on my tummy now - bathtime and nappy change times have become my ultimate opportunity just to prove how much. Sometimes it can take up to twenty minutes for Mom or Dad to try and get my nappy and pj's on after my bath, while I roll around like a goofy, naked spinning top on the bed, more often than not still with my sponge/cloth in my mouth. Mom has tried to take some photo's but I am afraid they are just too explicit for this blog...or ANY blog.

It's been great chatting to you all seeing as Mom's always trying to hog the posting - yip, she's a blog-hogger alright! :)

Oh...Oh! I almost forgot. Check out the new link to this really amazing website Mom's had me added to - it's on the righthand side of my blog - just click on the beautiful Prayers for Little Angels picture with the teddy bear.
Posted by at
Labels:

1 comment:

  1. antheaDecember 2, 2010 at 9:06 AM

    Hi Nicky,
    Looking very good is little Smurf wow he is doing so well and thankfully enjoying life so its much better for you....praying for this spurt to carry on

    ReplyDelete

Subscribe to: Post Comments (Atom)