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...
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)

Friday, January 21, 2011

This-is-how-you-cope 101

Maybe it's the lack of sleep or the niggling concern that Sam is never going to regain those oh-so tiny milestones he'd managed to reap in before the surgery or just me wallowing in some delicious self-pity...who knows? Either way, I have been having a bad day or two and, as I would hate to have Sam's blog filled with an unacceptable amount of negativity, I try most of the time to just shake it off without going into too much detail...will instead occasionally post a poem/inspirational piece like "You're a Fighter" which is effectively me saying "Hey, not feeling too good today" and then trying to self-therapy myself out of it. Whatever works, right?

But whatever the cause, the fact is that I have been feeling not too chipper lately. And I say "chipper" with a smile because the moment I typed it I already started feeling heaps better. Maybe I should have just resorted to some good ol' ranting and venting days ago already! I read a book a while ago....after taking a while to read it in the first place....compiled by a psychologist who, in his opinion, outlines the processes we ideally work through to ultimately achieve acceptance and peace with parenting a different needs child (*I say different needs because I happened upon a particularly awful site where there is some rather brutal controversy about referring to our kids as differently abled as it allegedly incorrectly implies that they can achieve/function as "normal" kids but just in a different manner which is, apparently, misleading to caregivers, teachers, etc. There was one incredibly malicious statement which I refuse to post as I am sure it would break the heart of many of my fellow special needs moms but it really breaks MY heart to realise that in a society which, at face value, appears to be embracing the whole "everyone is equal" concept, there are still many who inwardly do not genuinely believe that - so very sad.)
 
Anyway...now that I've made light work of destroying that "chipper" smile (mmmm....maybe it's my recent reading material that's responsible for little miz me????) So, in the book after each of the psychologist's steps are several parents' accounts of their own personal journey with a special needs kid, applicable to the relevant step and, although one or two of the stories gripped me (especially the one about a little girl who's sole disability was living with Sensory Integration Dysfunction Disorder and how, this disorder alone, can completely incapacitate one) I felt the majority of the stories were far too sugar-coated. I in no way dispute the fact that we are blessed to be given the opportunity to parent a child with special needs but, and this is going to sound so very morbid, sometimes I want to read about the hardships and disappointments and utter misery that other parents have gone through because it makes me feel less of a failure at learning to accept and adjust my hopes and dreams with my own little Sam. 

In all fairness, I did find several inspirational excerpts, but battled with the whole concept of having to follow a particular step-by-step pattern before finally accepting my son. I mean if I want to follow a denial-goofball-denial-anger-denial-grief-denial acceptance pattern as opposed to denial-anger-depression-acceptance-empowerment pattern, why can't I? So today I happened upon a preemie-forum (purely by accident this time) where a neonotologist had posted the, in his mind, debatable protocol of  resuscitating prem babies born at less than 32 weeks due to the high probability of CP. And from there the discussion snowballed as more and more special needs mom's joined in and the discussion, somehow, made a 180ยบ into a heated argument about how to emotionally cope with a child with disabilities and how some contributors basically said, in order to maintain sanity and move forward, you HAVE to give up on all your hopes and dreams for that child and so it went on until it reached quite a comical level where the claws came out and the hair was raised on the back of many a mom!

And I thought WOW...how can any one person tell another how they H.A.V.E. to cope with their shattered dreams and brokenhearted realisation that their baby will endure a life filled with more challenges, trials and suffering than most. Surely that is the ONE luxury we have....to travel this journey in our own time, in our own way and with our own ideals. For a split second while reading all this hogwash I thought, maybe I really am setting us up for unnecessary disappointment by hanging on to all these unrealistic expectations. But you know what they say about split-second thoughts....well, I hope you do because I sure don't! At the end of the day...yes, a rather long day, but still a day filled with a precious little boy who still has enough joy in him to giggle uncontrollably with one look from his big brother...to demand a reaction by the mere flick of a hand...to secretly steal mom's chocolate literally out of her mouth....I still cling madly to each and every one of the hopes and dreams I have for my little conqueror smurf.

5 comments:

  1. And so it continues! We hope and second guess and readjust our hopes all the time. Keep hoping!

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  2. I will always have dreams and hopes for Noah. A year or so ago I realized sometimes you have to let go of the dreams you had and then create better dreams. I have been having a couple of bad days myself. I encourage you to write these feelings down like you just did. Your blog doesn't always have to be "chipper". As a matter of fact I appreciate the honesty. I am real on my blog as well. Life is not always a bowl of cherries. Hugs..

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  3. Thanks guys! Don't know what I'd do without my RTS "family" Mwaaahh!

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  4. It is always good to have a rant!!! Glad you share that side of your heart, makes me see I am not alone.

    I reckon we all try our best to put one foot in front of another - no formula to fit everyone. Keep trusting your inner voice. And His Voice.

    HUGS

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  5. There is no formula for raising a special needs child as there is none for raising an ordinary one. I think we all just do the best we can with what we have and pray and pray that we get it right. Sure its not easy to let go of your hopes and dreams for your own Angel but when you are so busy getting them from one point to another it soon fades and you create new hopes and dreams and they go around things other take for granted. So we get excited when they might say one word and for other little children their first words are missed completely because that is what kids do anyway no big deal. One lesson we sure learn from our special children is to take absolutely nothing for granted and to celebrate the smallest of achievements. So they become our teachers instead of the other way round.

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