Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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 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, June 10, 2014

Hey! I was happy in Holland :(

There must be very few special needs parents who have not, at some point,  read through the piece by Emily Perl Kingsley...
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
And the thing is, I was doing quite okay in Holland...tulips and windmills have become my 'thing' and I have become very passionate about the lovely things in Holland that those in Ireland miss out on. 
But now, after five years in Holland we're being pushed along to Belgium.and I'm like NO! That's not fair, we've laid our hearts in Holland. Why weren't we at least given the choice, seeing as we were bumped from Ireland, of whether we would prefer Holland or Belgium. I mean really! It's.just.not.fair! Okay sure, it's not like we're off to Egypt which would be a more radical change but there's only so much vacationing a person can handle. And if we absolutely HAVE to go to Belgium couldn't somebody have told us that in the beginning? Like hey guys, instead of going to Ireland you guys are going to Holland AND Belgium...some times you'll spend a fair amount of time in one before needing to cross over to the other but there will be times when you'll have one foot in Holland and another in Belgium. 
Yeah, that would definitely have made for a much smoother transition. Smooth is just not how this ride has being going lately...
The amazing news that Sam does not have the Agenisis/partial Agenisis of the Corpus Callosum more often associated with Rubinstein-Taybi Syndrome and that there has been no retethering of the spinal cord, had us all in a jovial mood and so we planned Sam's first ever birthday party. 
I suppose I can be 100% honest and say I truly believed that Sam would be walking by his 5th birthday. Heck, I thought he'd be walking by his 4th birthday. I read an article round about the time of Sam's birthday about 'living loss' or recurring grief which effectively is repeatedly dealing with the loss of the child you thought you were going to be bringing into this world. While I completely relate to the concept of the recurring grief (which can be brought on by occasions like birthdays) I do believe that, in spite of his RTS and more recent additional 'issues', the little personality inside from which shines his sense of humor, his affection and his smurfiness, is the very essence of Sam which would be the same regardless of the 'packaging' it came in. For me it's not so much a case of mourning the loss of the child I never had but more mourning the struggles the child I do have, has had to battle through and more heartbreakingly, those still to be encountered. 
The Monday before Sam's party I was asked to forward the MRI report to the new neuro-paed we were scheduling an appointment with. Only then did I realise I'd never seen the report so requested a copy from the radiologist and forwarded it on, only taking the time to read it myself a couple of days later seeing as I already knew what was in it. Or so I thought. 
And there it stood in black on white that the Corpus Callosum is in tact and that no syrinxes have formed on the spinal cord as a result of the original tethering. It said that the conus now lies on the L3 vertebrae which I can't say I was fabulously impressed with but because no post surgery MRI was done we don't know if this is the original post-op result.   
The report also contained the following :
"Multiple periventricular low T1 cysts are demonstrated likely consistent with Periventricular Leucomalacia sustained during perinatal life.
A lumbar segmental anomaly is identified with sacralisation  of a lumbar-type vertebra....Contiguous disc bulges are identified at the L3/4, L4/5 and L5/S1 levels.
Spina Bifida from the L5 to S2 levels.
Supratentorial, periventricular leucomalacia is identified."
Turned to the front page to make sure this was definitely Sam's report. It was :(
Well Hallo Belgium!
After reading through more of the report and with a little help from Prof Google it seems that the correct term for the lower vertebrae condition would be Spina Bifida Occulta . And the rest of the stuff? Who knows. Thankfully though our appointment with NNP (new neuro-paed) was bumped up from 22 August until, well, this almost exactly two hours to be precise. That type of being bumped I can handle.
But despite feeling a little blindsided by all the new info and more than a little battle-weary, we partied :)
Jumping Castles are one of Sam's current Aunty Cammy insisted on providing him with one for his birthday.
Fad or not, Sam was a little unsure at first but soon got into the spirit of things
Teletubbies meet Buzz Lightyear...Telebuzz's? Buzztubbies?
Another, rather trying fad, books! books! books! Sam goes nowhere without a book, he bodybashes himself to sleep holding a book and more often than not falls asleep on top of it, he swings with a book, eats with a book, has a nappy change with a book. So can you imagine how much fun bathtime is? And yes, we've tried the waterproof baby bath books...they just don't provide the same quality of sensory input that flipping through pages and biting covers does. Until we find a suitable alternative or until (oh yes please) this fad passes, bathtime every evening will be accompanied with hysterical help-I'm-being-murdered-screeching blaring from our home.

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