...until Sam's op. I am meeting with the anaesthesiologist this afternoon at 1:00pm, armed with my little pack of information - it can't harm to be prepared :-) I thought by this stage that I would be quite hysterical with anxiety but am pleasantly surprised to find myself a little more relaxed than I anticipated. The truth is that there are so many people praying for Samuel, I am already receiving emails and sms's (texts) from friends telling us that they are praying and keeping him in their thoughts! So, with that kind of prayer power behind us, you can do nothing else but believe that he will be safe in God's hands :
"Don't worry about anything; instead, pray about everything. Then you will experience God's peace, which exceeds anything we can understand."
Phil : 4:6-7
So, onto something else : about a week ago there were a few emails on the RTS listserv about the challenge some of our RTS kiddies face in making friends. Although we are not at that stage where this affects Sammy now as most of his "friends" are either the battery-operated, "wheels-on-the-bus" singing kind or the hairy, tail-yielding, four-legged kind. But still fell upon a poem that, I thought, was quite sweet and relevant :
A FRIEND LIKE ME
Please don't be afraid of me, I want to be your friend.
And if you get to know me, your rigid thoughts might bend.
Thoughts that I am different, from others that you know.
I really am no different, and this I'd like to show.
I live and breathe and laugh and cry,I love to play and learn.
I sometimes do things differently, which can cause some concern.
You see, some say I am special,I guess this much is true.
But if you were to ask me, I'd say you are special too.
We are all a little different, no two are just the same.
It's really something wonderful, that way there is no blame.
When things don't go just perfectly, and others get confused,
And say things like "poor child" and other terms they use.
It's okay if you look at me and might not understand,
It's okay if you touch me and even hold my hand.
My life has many obstacles, much more than you could know,
But that's now what I dwell on, it's me, that's all....and so....
Please don't be afraid of me, I want you just to see,
How truly great and wonderful a friend like me can be.
Tracey Porreca
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
Dear Christiaan and Nicky,oh how Iwish i could have given both of you a hug and just be there.but you are all in my thoughts and prayers,please keep me updated.love u all Janina
ReplyDeleteHi Nicky, this is truly beautiful and very true. Keeping you and Chris and Sam in our prayers especially at this time. Amy is doing her bit too. Be strong and brave and God will truly get you through this..... That is right with so many prayers everything will be alright. Lots of love Anthea
ReplyDeleteHi Nicky,
ReplyDeleteJust catching up on your blog. I LOVE this little poem you found. I'll have to tuck that away somewhere. Thanks for sharing it.
I too am praying for your family. I'm eager to hear how things go with Sam. When you have a moment to update please let us know how things are going. In the meantime I send you many hugs and many prayers.