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)

Thursday, September 18, 2014

An untimely demise...

...of Sam's left testicle is suspected. You know, the testicle which (so it seemed) had made a relatively safe relocation from it's original position up yonder abdomen, unlike it's rightside counterpart which had to be evicted. I noticed a while ago that that little testicle, apparently homesick, had gone MIA. Upon closer examination yesterday, Doc Paed discovered that the empty...um...housing unit (?)...was not so empty after all as there appears to be some sort of small mass of tissue there but not the right size or consistency of a healthy testicle. We will of course confirm with a scan but it seems very likely that the lil Smurfy dude is now testicleless. Yay for hormone replacement...when the time comes, of course. Although I'd be lying if I said I'd be totally devastated at having to skip another dose of teenage hormones.

Matters of all things testicular was not the sole purpose of our visit to Doc Paed yesterday. First and foremost was the wheezy/congestion/coughing issue and then the fact that, at the time, Sam had gone 4 days without a bowel movement (and here you thought we were moving into less 'eeeeuuuuuuu' territory! ).

It's a bit of a catch 22 really. While, most of the time, Sam seems very ready from a sensory perspective to move onto more solid food, his digestive system just doesn't seem in sync. And it's about the fourth time now that we find ourselves dealing with constipation/impaction problems this year...which inevitably leads to urinating issues and what not too. So we're back to pureed foods and our good ol friend Pediasure, as well as a hugely increased dose of Movicol which already seems to be helping as we've had about 4 poops this evening. No spectacular proportions yet, but at least there's movement. Yay!

Antibiotics and some Celestamine for the throat and sinuses but I can hardly complain as Sam's had a pretty good run through winter this year. He's grommets are apparently sitting at very odd angles, no doubt working their way out but given that they were only meant to last about 12-18 mnths and it's been 15 months now, it's really quite expected.

And one of Sam's newly acquired skills is stripping, because teaching him to undress himself seemed like a good idea at the time. When I tried to get him to nap the other day (Bwaahaha...napping! A momentary lapse of reality) Sam decided to strip in protest. When he only managed to remove one layer of clothes, he stripped the bed instead. He was finding it all too amusing...until I made him pick it all up afterwards (with me being his 'walker' of course)...


Wednesday, September 17, 2014

Let it go...

...let it gooooooooooooo!

That's what I've told myself at least ten...twenty times this evening. But myself just isn't listening to myself.

We went to watch Meg's school concert tonight, with a little help from our friends at Iris House in the way of a respite carer for Sam.

So we're sitting there watching the Gr 1's rendition of Frozen and I think to myself "Boy, these kids are so tiny! "

Meg was tiny too.
Seven years ago.
This is Meg's last primary school concert.
This is my last primary school concert.
Sam won't have a primary school concert.
Sam won't have any concert.
I want Sam to have a concert.
I want Sam to be dancing around in an oversized Olaf costume, trying to find my face in the crowd.
I want to be cheering him on alongside the hockey field.
I want to chat animatedly about what Sam wants to be when he grows up.
I want to tease him about the little girl who smiled sweetly at him in the shops.
I want to write out birthday invitations for kids HE HAS asked to his birthday party.
I want to ground him for not doing his chores.
I want...
I want...
Sometimes I just want normal.
I hate the idea of normal...bleh!
But sometimes my heart breaks for normal.

Just sometimes...♡

Wednesday, September 10, 2014

Fears

Do you have any fears? The crippling kind? I do...it sounds ever-so cheesy and overdone but I have a very real fear of heights. The kind of fear of heights which had me near hysteria on a ferris wheel...despite being in my early 20's...while my 5yr old son sat calmly next to me, enjoying the sights of the festival below. The same kind of fear which prevents me from looking down lift shafts and enjoying the delights of Cape Town's most loved attractions like the cable car up to Table Mountain. 

So, if I had to imagine what it would be like to live each and every day...every hour...facing fear, I would picture myself trying to perform everyday functions while teetering on the edge of a ridiculously high cliff. And just thinking about the most simplest of activities, like walking, makes me want to cover my face and cower down. 

And that's pretty much where we're at with Sam at this moment. 

I don't usually like to post when we're going through a rough run with Sam.  I find that waiting for that moment to pass usually allows for a less emotional, more inner-reflective post...which can be quite therapeutic.  And, another big plus, makes me sound less like a whingey not-coping-that-great mom.

But this moment just ain't passing...and I fear that if I wait, we'll next catch up round about Sam's 21st birthday! And my 56th birthday....Eeeeek! I just discovered a new fear...ageing! Nah...just kidding. 

Sam experiences life at the moment cowering down, shielding himself from the world...which has become an unbearably frightening place for him, even more so than before. Sam has, and always has had, two different kinds of defensive reactions...an aversion to anxiety-triggering elements,  eg. the puking at the sound of a hairdryer. And then completely debilitating fear, eg. when you lie him down on an unfamiliar surface (say to change his nappy) and he is so afraid that he can't even breathe. These two reactions have completely switched places and while sensory aversion occurred more frequently with moments of terror only happening very occasionally when circumstances of our surroundings were beyond our control...I now get commanded by Sam to blowdry my hair every morning! And cars induce the same reaction lying down used to! 

Cars? Cars! *sigh* 

As soon as Winter showed just the subtlest of signs of letting up, we pounced on the first opportunity to commence our usual insanity-preventing evening walks a couple of weeks ago. Suddenly with every car which drove passed us, Sam covered his face with his hands, turned his body around and tried to push his body as low down into the stroller as he could manage. And so it carried on the moment Sam noticed a car approaching.  A few nights later, determined that at least Sam would get some exercise,  we took him out front to walk an extremely short distance down the road, holding our hands. With us staying in a close, we expected there to be limited traffic...which there was. Suddenly Sam turned in panic, near climbing up my leg in his desperation to be picked up. Sure enough, a hundred metres or so in front of us, was a car....a stationary car. Which had been parked there since we began our stroll! 

So...cars and walks are now out!  It's so heartbreaking to see how full of fear Sam is without having the benefit of verbal communication to be able to soothe his worries and determine exactly what feeds these struggles.  I used to pray each and every night that the Lord would lay His healing hands on Sam's brain, allowing him to master walking and speech. Recently I changed the nature of my prayer...I pray that the Holy Spirit will completely overflow within Sam...will quiet his many fears. Just days after my new petition, so intrigued with his obsession with numbers,  Sam stood holding onto the kitchen counter on his own, completely absorbed by the scrolling numbers on the microwave seemingly unaware that I had removed my support from behind him. I have hope ♡




As Sam's anxieties grow in triggers and severity, so does his intolerance of social activity.  In church this morning we sat at the back, right next to the door in case I needed to make a rushed exit for some vomit damage control.  Every time the door opened Sam threw himself into serious unmanageable extension (almost landing on the floor several times) while protesting loudly.  It was undoubtedly the most highly-strung we've seen him during the passed few weeks and having  substantial comparison,  that's a little worrying.

On a positive note, Sam has replaced his favourite play-it-till-it-induces-nausea balloon song with a fresh tune... I'll give you 3 guesses what the new favourite song is. Nope, let's make that 300 guesses because there's no way you'll get it right.  Are you ready? 

Acapella by Karmin

Yes, you read right! I know, crazy isn't it?Not as crazy as having to listen to "Nevermind...bring the beat back" after Karmin "does it in falsetto" around 20-30  times each and every day (cos that's just a whole new level of crazy there)! 
But crazy nevertheless. 

Tuesday, September 2, 2014

A letter...



To the Sibling of a Child with Special Needs

You’re on my heart more than you know. I know sometimes you feel like your sibling gets all the attention and I don’t notice you, but it’s not true. Entire days go by that I ache because I am so tied up in dealing with the newest symptoms, medications, and endless consultations with specialists and therapists that I don’t have time to sit down and talk with you, listen to you, like I really want to.

I see the tears you cry when a new set of symptoms means seeing another specialist, and we don’t know how many times we’ll have to travel to get to an appointment there, how many years we’ll need check-ups with that particular specialty.

I see your frustration and sadness when you witness another meltdown, are told about another surgery, or have to endure your sibling being in the hospital yet again. I see your struggle to help out when you’re asked to in situations where your dad and I aren’t around and other adults ask you to step in when they don’t know what to do.

Just let me say this:

You’re a child. You’ve had to take on far too many “adult” responsibilities and grow up way too fast already. I’m already wondering if you’ll end up being the one responsible for your sibling after your daddy and I are gone, and how you will handle that. Please enjoy being a child and let me take the burdens I can remove from your shoulders. They’re far too heavy for you. I’ve said it before, and I’ll say it again: When something happens and adults turn to you, do immediate damage control and send them to get us. You are not responsible for handling the situation alone.

You are loved more than you can imagine. I see you, I see your pain, and I see the sacrifices you make every day—to not rock the boat, to not cause us any trouble, and to help in every way possible. I love you for trying to be the “perfect” child and not cause your daddy and me more stress. Please see You’re a child. above and know that we don’t expect perfection. We don’t expect you to be able to avert every meltdown. We love you exactly as you are, mistakes and all.

I love who you’re becoming. Despite the frustration, anger, sadness, and other negative feelings you experience from time to time, I love who you’re becoming. I see your compassion, kindness, and sensitivity to others’ feelings. You are wise beyond your years. God is going to use the experiences that cause you the most pain now to continue developing character traits in you that will be invaluable to you both now and as an adult.

I love your love for your sibling. I am always amazed at how you are the first to defend your sibling when someone says something unkind. I love how you play and share life together. Although at times your hurt is deep, your love is deeper, and I am so grateful for that.

I’m sorry. For all the times you’ve felt neglected, unseen, unloved, or unwanted, I’m sorry. Please forgive me. I am making an effort to find ways to spend more alone time with you—both in little moments we can steal at home and in times we can go out together for a soft drink, meal, or to browse our favorite stores. Balancing everything gets difficult in certain seasons, and I am trying to get better at it.

You are amazing. And don’t you ever forget it.

I’m here for you. I love you every bit as much as your sibling, and I want you to know that I’m here for you too. We only get one chance at your childhood. Let’s put the mistakes of the past behind us and make the most of every moment!

Love always, Mom