I have not had the privilege of a complete Sunday church service for quite some time. For at least the past two months almost every service has been spent walking Sam up and down the foyer while trying to grasp snippets of sermon through the doors. So, this past Sunday, Chris offered to walk Sam outside while I got to listen to our Pastor - and it was the perfect Sunday to be present. The service was the second of a two-part sermon, largely about Psalm 34 ("I will extol the Lord at all times,...") and, as part of the service, our Pastor read an excerpt from the biography of James Hudson Taylor. Taylor writes while his young daughter, Grace, literally lay dying on a couch from meningitis just metres away from him...it is the most heartbreaking and emotional writing, but Taylor remains at all times loyal and faithful to his Lord. Our minister struggled on several occasions to keep control of his own emotions which I found so amazing, that he allowed his own vulnerability to be seen by his congregation.
(James Hudson Taylor 1832 - 1905, was a British Protestant Christian who spent 51 years in China as a missionary. In his lifetime, he saw not only the passing of his daughter Grace but, from what I remember, at least two/three other children - including a son called Samuel - and then of his wife, Maria, whose death almost completely devastated him.)
Sam has been particularly fussy over the past few days...I first thought he might be getting ill again, but by the weekend noticed that in addition to the new tooth I saw cutting through last week he also has a set of molars cutting through as well (that's like ten teeth in four months - easy does it Sam). He is definitely a little mucousy though and his gag reflex seems to be back in full force, so when I fed him his lunch this afternoon he started coughing and after spluttering out several mouthfulls, next thing up came his previous bottle and all his food. Breathe. Breathe. Breathe again...wipe up vomit, change Sam, change me.....try again. Second attempt at lunch stayed down. Had another bottle and some tea later. Come supper time (where I pureed PUREED food just to make sure there were no gag-triggers)...and up came semi-digested milk, tea and freshly swallowed supper. Breathe. Breathe. Fight back tears. Breathe. Fight back tears. Wipe up vomit (this time with Chris's help). Change. Try again. Oh my gosh - isn't it funny how quickly we take progress and improvement for granted? Thankfully, before I could surrender myself to a full-blown sobbing, Sam (obviously in an attempt to redeem himself) started babbling in his heart-melting way and threw in a spectacular attemp at clapping his hands. As I trudged up the stairs to prepare Sam's bath, feeling all sorry for myself I tried some self-therapy....Really woman! Build a bridge! A couple of months ago it was more the daily norm for his milk and the tiny bit of solids he was eating then, to come up than stay in his tummy and after one day's vomiting you're moping around like it's the end of the world. Felt a little better, not much. (Note to self - fire therapist, she's just no darn good). Then, while the tsunami that is Sam, was having his bath (together with our bed, the floor, the curtains, the neighbour's three houses down) I thought about old Hudson Taylor and the divine strength of his faith and my mountain became a molehill.
Still my rattiness is not completely unjustified...I am hoping that Sam is not getting ill as it is Sam's RTS sister, Payton's first birthday party on Saturday morning and we have been looking forward to our three RTS angels (Sam, Payton & Mattie) all being together for the first time, for months, as well as finally meeting Mattie's baby brother, Nic, for the first time!
Sam had an appointment with the urologist Prof F referred us to on Wednesday, Dr J. He said the normal procedure to diagnose a neuropathic/genic bladder (where they insert a catheter into the bladder, inject a dye and then take several x-rays over a 45min period) is not always conclusive in such a small baby and, as the procedure is pretty uncomfortable and would require Sam to be put under anaesthetic, he was not certain if this is the route to go, although he does appreciate that Prof F needs a "benchmark" from which to monitor Sam's bladder after the tethered spinal cord surgery, in order to determine whether the bladder's condition is improving or deteriorating. So, as Prof F is currently overseas, Dr J has sent him an email to which we are hoping he will reply before Sam's next appointment with him on 22 November.
"All our difficulties are only platforms for the manifestations of His grace, power and love"
James Hudson Taylor
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)
Tuesday, October 26, 2010
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Amen. We've been there too...drowning in vomit, reprieve that we take for granted, then another onslaught of vomit that is so depressing. It is so wonderful that this is not a regular part of Sam's life, and he will get back to his normal self soon. And it is soooo eye opening to see the life struggles of others and be encouraged by their faith. Have fun at your mini RTS get-together! Wish we could be there!
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