SAM...MORE THAN A CONQUEROR: Bathing Bloopers

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)

Monday, January 30, 2012

Bathing Bloopers

I never imagined bathtime could be such an incredible source of entertainment. On Friday evening we tried out Plan A which was that I would put Sam in the bath with me then, once Sam had enjoyed some bathtime playing and had been washed, Chris would take him out and dress him. Within minutes I was silently "Whoop Whooping" to myself as, after not a moment's hesitation to get into the bath, Sam lay back, super-relaxed kicking and sing-songing away to himself while he played with his foam numbers. Ahh...the sweet joy of success. And then Chris came to take Sam out to dry and dress him and Sam screamed BLUE murder....literally - he turned blue from all his screaming. So...on to Plan B.

On Saturday evening Chris got into the bath with Sam. Although taking Sam out at the end of the bath was pretty uneventful, Sam refused to sit down in the water. So Chris ended up having to hold him upright while I washed him...which is just about as effective and successful as Chris simply holding him over the bath like we found ourselves doing last week.

On to Plan C : last night we tried Plan A again with a slight modification. Instead of Chris taking Sam out of the bath and, obviously the problem, away from me...I would try and get both Sam and I out of the bath at the same time. It would of course prove a logistical nightmare with me having to hold onto Sam while lifting us both out of the bath. Still, I thought it was worth a shot and had the bath been a little shallower, Sam been a little smaller, me been a little stronger and ever-so-slightly more like Mr Fantastic from the Fantastic Four, Plan C could well have worked. Unfortunately it was just plain ol' me, Sam and our thirty-something year old, metre deep bath (well at least that's what it felt like). So after an almost dislocated shoulder and knee, it was decided that Plan C is not do-able either.

If it wasn't so frustrating it would be unbelievably hilarious! What am I saying? It's still hilarious! Especially last night's episode. So...on to Plan D tonight which is a plain and simple shower for me and Sam. We've done it before, we know it works and, although it means that Sam has to skip out on his playtime in the bath, it's the best we can do for now. In any case, if all goes well and Sam's surgery goes ahead on Friday we'll be doing about two weeks of "bed baths" regardless of sensory issues. There's always a Plan E....

Which in our case would be the BAD method! Just kidding!

Speaking of surgery...in an already unsure mind as to whether Sam will be good to go for Friday because of his fairly congested nose and up-and-down temp again over the past couple of days (high enough for me to have to give him some meds on Saturday and yesterday) Meg, unintentionally of course, has us even more concerned as she is in bed today with a stomach bug. Keeping her mostly confined to her bedroom is not proving to be too much of a challenge as she's feeling quite miserable and is quite happy to just lie in her bed...so my plan to tape up her doorway and feed her her meals from outside the house, through her bedroom window might not be necessary after all. Which is really quite a pity as I imagine it would have caused quite a stir with the neighbours.

In closing, some random pics (some already seen by my FB friends) :